Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: tiggy on May 19, 2019, 12:49:34 AM
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Hey guys,
While I wasn't planning to start a diary before this procedure, I feel the need to do so now as my way to give back to the forum. This diary won't be as detailed as some of the great ones, like IFS's diary, but I will try to update on new developments and answer questions you have, so long as I find them appropriate.
My stats: 5'3, male, 145lb. Stryde nail size used is 11.5, which is one size larger than the smallest size of 10. I hope to achieve 3 inches.
So, I had surgery on Monday and was discharged Wednesday. After waking up, I felt no pain and was still under anesthesia. There are leg pumps on each leg used to circulate the blood in the legs so as to prevent blood clots. An additional device is placed on each leg which bends the knee slowly throughout the day. This device isn't on all day unlike the pump, but is used for about an hour and half each time, 2 - 3 times a day. I have had no problems with sleep so far. I have been averaging about 4-6 hrs at the hospital, and that is because of nurses constantly talking by my room and waking me up for meds or to take blood. Now that I am home, I sleep 6-8 hrs every night and wake up not because of pain but to empty my bowels or because of discomfort from laying in the same position.
For what its worth, I am quite used to sleeping on my back for prolonged periods of time, though it does get quite annoying at times.
In the hospital I barely took any oxy. On day 2 after anesthesia wears off, I think I took about 2 or 3 oxys, and that wasn't because I had pain but it was because I was afraid of having some and therefore tried to keep ahead of the pain. The PT came in at 11 am and I had prepared in advance by taking 2 oxys. This is where I was to get up and take about 10 steps. As soon as I sat down on the bed with my legs on the floor, I immediately felt nauseous, to a point where my color changed. I was seconds away from vomiting but this subsided quickly when I was allowed to get back in bed. The PT came in again at 4 pm, but this time I had taken only 1 oxy, and also anti-nausea medicine through the IV. I was able to get up and take 10 steps, but as soon as I finished, I felt immediately nauseous and got back to bed. The pain was about a 3 while walking. The first thing you notice when waking up from surgery are just how heavy your legs feel, its as if you have 100lbs on each of your legs accompanied with pain and discomfort when moving them. Because of the nausea during this 2nd PT, I had not technically cleared PT in order to be discharged. I knew I had to do better the next day to be able to get a discharge, so as not to incur an additional nightly hospital stay. I know this question will come up so here is the response: my insurance did NOT cover any of the fees except for routine medication, wheel chair rental, walker and crutches. I will not list what I have paid but can say that the prices listed on this site are more or less accurate.
Thus the following day I had prepared in advance. I took 1 oxy, anti nausea medicine and also sat up on the bed in upright position throughout the day. I did some minor stretches also which the PT gave me the day before, including the heel slide, etc. This PT session was a success and I was discharged as planned. After you get dressed, they roll you down on wheelchair and then you get into the car. I had taken an oxy beforehand because I knew getting into the car would be painful, I was right. Id say the pain jumped to about a 5 during one wrong movement when getting into the car, but it quickly subsided once I positioned myself properly. Got home, got into the bed and rested the rest of that day without doing any PT because I was already exhausted from all the PT in the hospital and the struggle with getting into and out of the car. I actually had 2 PT sessions on the day of discharge, 1 was to learn to use the walker and the other was for the crutches only.
That night I had my regular of about 6 hrs of sleep and just woke up once at night because of discomfort due to sleeping on my back. But I was happy that there was no longer nurses talking near me or other noise that interrupted my sleep. Pain that day was anywhere from 0 at rest to about 2 or 3 when doing PT. I am doing PT on my own at home and just following the exercises given to me by my dr. You can find some of those in IFS's diary, if you want specifics.
I started officially lengthening yesterday, the sessions aren't painful but I found my left leg to react adversely after the day's session. I have a dull pain in that leg of about a 3 with no oxy in my system. Pain comes down to 0 after one 5mg oxy. The right leg has no pain whatsoever during rest and during PT it jumps to about 2 with oxy. The left leg during PT is at about a 4-6 without oxy. I guess its worth it to mention that I have high pain tolerance just based on my knowledge of how my body reacts to surgeries I had in the past. I will not specify what those surgeries were, because that is irrelevant for our purposes here.
Today has been relatively painful for my left leg, mostly because I did NOT use any oxy this morning when doing PT. The reason for that is I had severe constipation. I had not taken a poop since morning of surgery, and today was day 5. I was afraid to take more pain meds because I knew that would make the constipation worse, so I sucked it up and did some exercises, though not as successfully as I would have liked. Long story short, I resolved the constipation this afternoon and immediately took 1 oxy to do PT. The pain went down to about a 2 for both legs and I was ecstatic to be free of that burden. My left leg also feels tighter when I walk sometimes. I get a tightening behind my left knee, as if a muscle is bulging out. I had a family member massage it after I got on my stomach so that helped. Frankly I am concerned about it and expect things to get worse. I will keep my eye on it as things progress. I also don't want to jinx my right leg and I expect things to worsen significantly on that front as well. Will keep you updated of major developments.
I am using strictly the walker right now, I don't feel confident to use crutches at this time. I can fully weight bear and standing on my legs is not painful at all. Pain only starts when actual steps are taken. While I can technically fully weight bare, I do not do so when taking steps and try to re-distribute some of my weight to my upper body.
Anyway this is it for now. I am due now for another PT and my last lengthening for the day. I still cant believe I actually went through with this procedure, sometimes it feels surreal. At the same time I am glad to finally put it behind me because ive been carrying the weight of this surgery with me for the last 7 or so yrs. Lets see what the future holds...
Let me know if you have any questions.
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Tiggy,
First off my friend, congratulations on a successful surgery. I am so excited for you and I'm on your side! You are committed to living your best life and you're admired for that. I just reviewed your entire first post and boy oh boy does it bring back memories. I will say though Tiggy; I'm impressed on how you're already up on your walker and moving around, albeit slowly and safely; but you're on your feet and doing an outstanding job. Do not hesitate to use the pain medication regularly for the first 2 weeks. You will not get addicted to them and I understand however your concern for the constipation. Monitor how you react to that and hopefully you are able to use the pain medication as needed without the interference of constipation. Additionally, for your PT, you're in a lot of pain right now I'm sure due to surgical pains, etc... just do your best and the first week or so don't over due it. No need to rush to walking or over inflame your pain points.
Remember this -
Hamstrings, Hamstrings, Hamstrings
Quads, Quads, Quads,
Hips, Hips, Hips, Hips...
Stretch these guys as much as 2 to 3 times a day and get a nice deep stretch. Hold the static, stretch for 30-40 seconds. Also, if you have not purchased a stretch strap please do so. You likely will need some help reaching some parts of your limbs since your flexibility is and/or will decrease. You can find it here:
https://www.amazon.com/OPTP-Original-Exercise-Physical-Therapists/dp/B01LXWS98E/ref=asc_df_B01LXWS98E/?tag=hyprod-20&linkCode=df0&hvadid=167134995577&hvpos=1o1&hvnetw=g&hvrand=15847908816221732846&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9031600&hvtargid=pla-310388154630&psc=1
Also, stand as much as you can (Even if you are not moving your legs), so that you can keep your hip flexors lengthened. This will help you avoid the discomfort of Anterior Pelvic Tilt as you approach the 4cm + mark. Remember that sitting down shortens the hip flexor muscles and you need those to be looooongg.
Good luck and please feel free to leverage me as a resource as you venture into this journey.
All the Best
IFS
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Thanks IFS, I knew you would be the first to comment on my diary and I am very happy about that my friend! I will certainly follow your recommendations.
Actually I have a question for you and of course others who read this: I just finished lengthening for the day and I'm sitting on my bed looking at my legs. I can't help but feel and it actually appears to me that my left leg is longer than the right. Mind you, I have no pain whatsoever in my right leg while the left one has some pain after lengthening. I am concerned a little, though I know I am not sitting on the bed all that straight. I guess the best way to get a grasp is to lay flat and have a family member take a look. I don't remember from your diary but did you experience something of this sort? I am seeing dr R in about 10 days and I'm concerned that if I continue this way for another 10 days and if my right leg isn't lengthening, it may consolidate by then.
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Hi Tiggy... I'm messaging you from my phone so excuse typos. I am almost 100% sure that this is an illusion. Mark a point on your leg that is symmetrical such as on your knee...line them up. I would always be positioned off center on my bed and would think the same thing as you. I can remember when I first started to lengthen I was paranoid about everything. Dr. R tests the nails and lengthens you a full millimeter while you're in the O.R...this ensures that you're nail is working and gives you separation that you need. Also... the bone callus isn't rushing to your leg yet. You wont consolidate in 10 days from now. Monitor closely.
Also I reccomend that you buy a stadiometer to measure your height gain. Please see Amazon for this. The one I use is called:
Seca 213 Portable Stadiometer Height-Rod
It was nice to be able to keep tabs on my actual height gain without having to visit the doc.
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Good, a new stryde diary from Rozbruch.
I wish you all the best.
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Hi tiggy
Congrats on the successful beginning of your adventure!! You are doing great! Your feeling about legs discrepancy can't be true at this stage given that you just started lengthening a couple of days ago. When you take a X-ray and meet with Dr. R, you will get to know better. Just keep working hard and stay strong and positive!!
Best,
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Congrats on a successful beginning to your journey. Thank you for taking the time to share your experience with the community here - the insight and perspective that brave folks like yourself share with prospective LLers like myself is incredibly helpful.
Wishing you all the best. I'll be rooting for you!
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Congratulations Tiggy! How much was the surgery cost?
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What is your goal, Tiggy?
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Hi Tiggy... I'm messaging you from my phone so excuse typos. I am almost 100% sure that this is an illusion. Mark a point on your leg that is symmetrical such as on your knee...line them up. I would always be positioned off center on my bed and would think the same thing as you. I can remember when I first started to lengthen I was paranoid about everything. Dr. R tests the nails and lengthens you a full millimeter while you're in the O.R...this ensures that you're nail is working and gives you separation that you need. Also... the bone callus isn't rushing to your leg yet. You wont consolidate in 10 days from now. Monitor closely.
Also I reccomend that you buy a stadiometer to measure your height gain. Please see Amazon for this. The one I use is called:
Seca 213 Portable Stadiometer Height-Rod
It was nice to be able to keep tabs on my actual height gain without having to visit the doc.
Your post definitely set my mind at ease IFS, thanks for that. I didn't know dr R lengthens the nails 1mm in OR, thats so good to know. Its astonishing how 1 leg can feel pressure and pain after lengthening but the other has absolutely no response and feels normal. I am sure more surprises will come as I dive deeper into the process
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Thanks for your well wishes guys, I truly appreciate them and it certainly feels good to share this experience with you. I was in your same shoes before surgery and I know how desperate it feels sometimes to read a new and recent diary.
I was asked above how much surgery cost, as I said earlier I am not giving out numbers mostly because I don't know them myself yet. So far I have spent over $100k and still waiting for my anesthesia bill. As I said earlier, refer to the prices posted on this site, as they are relatively correct. The final price will vary based on whether your insurance covers all, none or some of the cost of the procedure, how long you are under the anesthesia (since the longer the surgery lasts, the higher the bill for anesthesia), meds, etc. It is meaningless to talk exact numbers. With dr R, you must plan to spend about $120K or so, in the event the insurance covers nothing. You should always plan for the worst case scenario because the last thing you need is worrying about money when you should be fully committed, both mentally and physically, to recovery.
As mentioned earlier, I would like to achieve 3 inches, but again I will only go as far as my body tolerates and so long as dr says its safe. I don't believe in setting goals for this procedure and achieving them no matter what. I think safety must always come first.
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Todays updates so far:
I went to bed late last night, it was about 2 am. I took an oxy when in bed because my left leg was in pain, about level 4. I slept without interruption and woke up by my alarm at 830 am because I had to lengthen at 9. I was definitely sleepy and could have slept at least another 2 hrs. I am lengthening 5 times a day right now so I have timed the sessions in intervals: 9am, 12, 3, 6, and 9 pm. The lengthening sessions must be completed by midnight. On Tuesday I will start lengthening 4 times a day and so will start my first lengthening for the day a little later which would give me more time to sleep, this is assuming nothing else happens that prevents this from happening.
Today is day 3 of lengthening and I did wake up with tighter legs that need more warm up than usual and I expect this to get worse. As soon as I woke up and slightly moved my left leg, the pain kicked in, right now its at about a 1. I haven't taken any pain meds yet but PT is at 12pm so I will be taking an oxy at 11am in preparation. Not sure if I said this earlier but right now I do the PT on my own but I have contacted a private therapist to come in next Saturday. He was recommended by dr R and at this time I mainly want him to watch me perform exercises and correct my posture, and maybe add couple more exercises. I don't know if I'm pushing myself enough right now but I was planning to take it easier the first 10 days or so post-op just to give the body time to adjust to the impact of the procedure, especially since I have the luxury to do that now more than I will later as tightening significantly increases with each lengthening.
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One last thing just to get this out of the way: when I was on the forum reading diaries, I couldn't help but feel and wonder whether it was a real patient diary. For this reason I am attaching the photo of my room on day of discharge. I may share X-ray photos in the future but for now this should at least make you feel more confident in this diary
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https://imgur.com/a/3S0hhzc
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Tiggy,
Couple of questions that I'm hoping may be able to help me manage leading up to my CLL.
1) How old are you?
2) How did you balance your career with this procedure? Did you have to take a leave of absence, quit your job, etc.
3) Have you told family, friends and co workers?
4) I know you mentioned you have family with you, but have you needed to hire an aide/helper through this process or do you have all of your needs met through family support?
Thanks!
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Tiggy,
Couple of questions that I'm hoping may be able to help me manage leading up to my CLL.
1) How old are you?
2) How did you balance your career with this procedure? Did you have to take a leave of absence, quit your job, etc.
3) Have you told family, friends and co workers?
4) I know you mentioned you have family with you, but have you needed to hire an aide/helper through this process or do you have all of your needs met through family support?
Thanks!
Hey Alchemist,
Sure thing:
1. Im 30
2. I am a student so this is summer break for me. I also quit my part time job.
3. Only the closest people to me know about this procedure. I do not care to tell anyone else because I do not owe anyone an explanation, unless my life decisions somehow impact them. If they notice the height change and make a comment, I plan to say Ive tried HGH and it worked for me. If they don't buy that explanation then its their problem, not mine. I am pretty certain the people I know don't even know LL exists anyway, so it should be pretty easy to sell the HGH explanation.
I see many people on this forum worry about what others will think. However, I was never that type of a person. I always did what I thought needed to be done and I knew that people who truly loved me would still be supportive even if they didn't share my views. All others do not matter at the end of the day. So my advice to those struggling with this is to follow what you believe is right. If others refuse to understand or otherwise condemn your choices, you should feel lucky to know who those people truly are and distance yourself from them. Its very simple really.
4. I have all my needs met through family support. I did not hire an aide because I'm staying with my family throughout recovery, so there is always someone near me. However, you absolutely need someone to be there for you and help. I can get up, fully weight bear and move around fine but even despite that I can't imagine cooking for myself or even transporting a plate from the kitchen to my bed, which is about 30 steps. So make sure there is someone there at least in the beginning. I will update the forum as to when I think I could be fully self sufficient when that time comes.
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Hi.. tiggy, congratulations... your in safe hands a brilliant doctor...
I'm looking forward to your future posts ..
Panda 8)
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Stryde is the only acceptable choice now. older devices like precice should be outlawed. It should be a crime to use non weight bearing nails.
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Hi.. tiggy, congratulations... your in safe hands a brilliant doctor...
I'm looking forward to your future posts ..
Panda 8)
Thanks Panda
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Your post definitely set my mind at ease IFS, thanks for that. I didn't know dr R lengthens the nails 1mm in OR, thats so good to know. Its astonishing how 1 leg can feel pressure and pain after lengthening but the other has absolutely no response and feels normal. I am sure more surprises will come as I dive deeper into the process
Exactly, right. One thing that you will find through the entire CLL process is that the "happenings" between the left and right leg are constantly switching off. In fact, the only constant IS change with CLL. My left leg was so troublesome the first 2 weeks that I could barely put any weight on it; then my right leg started to harass me. As far as lengthening...same deal. After I would use the device, sometimes my left would fill tighter than my right and visa-versa. Either way; everything will balance out at the end as it is now for me at about 130 days post op! I'll check back in with you! So far so good.
Best,
IFS
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congrats tiggy on starting the journey, will be keeping up, pain is temporary lets get it!
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Congratulations man!
I will be keeping up with your diary and wishing you the smoothest journey possible.
All the best!
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Hi Tiggy!
Wait so if rozbruch in new york cost more than a 100$k !! Then what does paley cost?!
I thought this dr was around 70$k or something why so expensive i dont get it !!
Now in the us if i want a dr thats very good under 80K$ who will it be ??
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Thanks for all your kind wishes guys, feels very nice to read words of encouragement from you. Stay tuned!
Kendra, dr Rs fees are about $75k but that does not include hospital fees and anesthesia. All of those are separate charges and if insurance denies them, you will be responsible. I can't recommend anyone below $80k in US because I am not familiar with their fees. Perhaps dr Mahboubian may be a good fit. You should research this site for more details into his fees or those of other surgeons. I did not consult with any other dr aside from dr R before my surgery so I can't comment on other drs, sorry. Good luck
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tiggy, can you post a video of you walking with your walker in these first days? I would love to watch it. How is your walking? You do one step and than another?
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Thank again my man for all the info you are giving us as for taking out the STRYDE does it have to exactly be one year after post operation ? And what if its been more than a year ? Could it be a problem? Because I herd it also costs money to take the device out
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Hey Tiggy,
Good to hear you're having a good post-ops with Dr. R.
I'm flying out to have a consultation with Dr. R in June. I too are planning to do CLL with Dr. R on my femurs with Stryde, or my 2nd option is Dr. G.
Can you tell me what goes on during your Dr. R consultation, beside x-rays?
Sorry for another insurance question.
May I ask if your insurance was one of HSS accept insurance https://www.hss.edu/insurance.asp?
I have called HSS and they confirm that they take my insurance for the x-rays for the consultation, but the stay at HSS after the surgery they will not know till Dr. R have the plan and give them the CPT/medical billing codes for pre-authorization.
Did Dr. R give you a plan and the CPT/medical billing codes for pre-authorization after your consultation?
Did Dr. Robert Rozbruch & psychologist Dr. Ellen Katz-Westrich requires past medical history from your primary doctor?
What is the cost of psychologist Dr. Ellen Katz-Westrich evaluation?
If I do it with Dr. R, I'll be by myself. Did Dr. R refer any hire help or can I do it alone?
Thank you for the your dairy!!!
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tiggy, can you post a video of you walking with your walker in these first days? I would love to watch it. How is your walking? You do one step and than another?
I'll see what I can do about a video. And yes you do take one step at a time though yesterday I noticed I could take those steps in succession very quickly, almost like you do when you are walking normally. But because I am sort of afraid to put my full weight in my legs, I try to take one step at a time more slowly so that I can support my weight better with my upper body.
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Thank again my man for all the info you are giving us as for taking out the STRYDE does it have to exactly be one year after post operation ? And what if its been more than a year ? Could it be a problem? Because I herd it also costs money to take the device out
Hey man,
No you don't have to take out the nail in exactly 1 yr though that is what the usual recommended time frame is. Dr R charges $10k for nail removal but that does NOT include hospital fees and anesthesia. I imagine anesthesia would cost about $1k or so and the hospital another $10k give or take. I imagine the total cost would be about $20k but that's only my estimate. You will only know for sure once you book surgery and the hospital calls you with their price (assuming insurance denies nail removal claim and you pay out of pocket)
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Hey Tiggy,
Good to hear you're having a good post-ops with Dr. R.
I'm flying out to have a consultation with Dr. R in June. I too are planning to do CLL with Dr. R on my femurs with Stryde, or my 2nd option is Dr. G.
Can you tell me what goes on during your Dr. R consultation, beside x-rays?
Sorry for another insurance question.
May I ask if your insurance was one of HSS accept insurance https://www.hss.edu/insurance.asp?
I have called HSS and they confirm that they take my insurance for the x-rays for the consultation, but the stay at HSS after the surgery they will not know till Dr. R have the plan and give them the CPT/medical billing codes for pre-authorization.
Did Dr. R give you a plan and the CPT/medical billing codes for pre-authorization after your consultation?
Did Dr. Robert Rozbruch & psychologist Dr. Ellen Katz-Westrich requires past medical history from your primary doctor?
What is the cost of psychologist Dr. Ellen Katz-Westrich evaluation?
If I do it with Dr. R, I'll be by myself. Did Dr. R refer any hire help or can I do it alone?
Thank you for the your dairy!!!
Hey Azman,
During your consultation you take an X-ray and then wait to see dr R to discuss the surgery. It's very basic but takes a long period of time. You should plan to be there at least 3 hrs.
Yes he did give me CPT billing codes and my insurance was on the list of accepted HSS insurances. Problem is that if your insurance classifies this procedure as cosmetic and not medically necessary, you will be responsible for the full cost out of pocket and it doesn't matter at that point whether HSS accepts your insurance.
Dr westrich doesn't ask about your past medical history. She will only discuss your reasons for surgery and also to see whether you have realistic outcomes of this procedure. Her fee is $800. She will give you a receipt and you can try to submit it to your insurance for reimbursement. I have submitted the receipt to my insurance company but it's been over a month now and I haven't heard back from them. I'll probably need to call them sometime this week or next to see if I will get reimbursed at least something. Dr R does ask for your past medical history in general but you don't need to submit any proofs from your primary care, if that's what you are asking.
No dr R did not refer any hire help for me. As I said earlier, my family was with me throughout this entire process and will continue to be there. You must have someone with you to take you home after surgery. I don't think hiring an uber to take you back to your hotel/house is enough. You actually likely need a reliable service provider who could take you home and make sure you are settled in. You can ask him for recommendations and I'm sure he will give you a name of someone who can be of use to you after discharge.
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Can you walk unaided indoors? When do you think you will change the walker for crutches?
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Hey tiggy
Thank you for the quick reply.
Just wondering, was your consulation x-ray cover by your insurance, if not what was the cost? Is HSS giving me the wrong information that my insurance will cover my consultation x-ray?
When you got your CPT billing codes from Dr. R, did HSS or his office do a pre-authorization prior to your surgery?
From SLM dairy, he states that if my insurance cover the consultation x-ray more than likely they will cover the HSS fee.
Just trying to figure everything out before my consulation with Dr. R in June.
I have save enough for the surgery with Dr. R but was hoping that my insurance will cover HSS fee so I can do both my femurs and tibias.
Thank you for all your help. Looking forward to reading your process.
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Can you walk unaided indoors? When do you think you will change the walker for crutches?
Good question, I was just thinking about that this morning during PT. I think I will try walking with crutches on Friday and see how that goes. And no, I cannot walk unaided, even though I haven't actually tried to do so, because to walk unaided you need to maintain balance. I am only 8 days post-op so walking unaided is way too soon for me right now. Safety comes first.
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Hey tiggy
Thank you for the quick reply.
Just wondering, was your consulation x-ray cover by your insurance, if not what was the cost? Is HSS giving me the wrong information that my insurance will cover my consultation x-ray?
When you got your CPT billing codes from Dr. R, did HSS or his office do a pre-authorization prior to your surgery?
From SLM dairy, he states that if my insurance cover the consultation x-ray more than likely they will cover the HSS fee.
Just trying to figure everything out before my consulation with Dr. R in June.
I have save enough for the surgery with Dr. R but was hoping that my insurance will cover HSS fee so I can do both my femurs and tibias.
Thank you for all your help. Looking forward to reading your process.
Hi there,
I still don't know if my consultation x-ray was covered by my insurance because I haven't received a bill for it from dr R yet nor any correspondence from my insurance company regarding the visit. I also have no idea how much the x-ray actually costs at his office because I gave them my insurance info assuming it should be covered. I will keep everyone updated as soon as I have any info on that front.
Yes HSS did try to obtain pre-authorization for my surgery but my insurance company denied the pre-authorization about 4 days before my surgery date. So everything was done properly, its not as if there was a mistake in the way this claim was handled. I have appealed my insurance company's decision to deny the surgery and I will also update everyone once I get a better sense of the final outcome.
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Hey guys, a quick update:
Today is day 9. My left leg is still giving me issues, I woke up without any pain on both legs, although both legs were tight. As soon as I moved my left leg, the pain kicked in to a level 5-6. I did some stretches while stil in bed, sat up straight and the pain slowly went down to a 2-3. I just took one oxy to hopefully eliminate the pain entirely so that I can do my PT in an hour. I think I'll try to not put much weight onto my left leg today to see if that helps with decreasing the pain in that leg.
In other news, so far I've distracted 6.25mm and will be hitting 7mm after today's lengthening session. That's all for now. I will have a professional PT come in on Saturday so I'll update the forum after that as well
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Hey guys, a quick update:
Today is day 9. My left leg is still giving me issues, I woke up without any pain on both legs, although both legs were tight. As soon as I moved my left leg, the pain kicked in to a level 5-6. I did some stretches while stil in bed, sat up straight and the pain slowly went down to a 2-3. I just took one oxy to hopefully eliminate the pain entirely so that I can do my PT in an hour. I think I'll try to not put much weight onto my left leg today to see if that helps with decreasing the pain in that leg.
In other news, so far I've distracted 6.25mm and will be hitting 7mm after today's lengthening session. That's all for now. I will have a professional PT come in on Saturday so I'll update the forum after that as well
My left leg was always a bit of a nag for me during the CLL process. It does actually help to keep some weight off of it. No need to force it. Since your surgery is still relatively fresh; you have some surgical pains that will eventually wear down. The left leg will get better and catch up with the right leg. The sense of humor side of CLL that we don't laugh at much is when the right leg and left leg constantly switch off as the problem leg. A great diary and so helpful to those undergoing CLL with Styrde.
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Hey IFS,
Yea man I remember your left leg pains very well. How long did it take for the pain to subside in your left leg? I wonder how long these surgical pains will last!
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Hey IFS,
Yea man I remember your left leg pains very well. How long did it take for the pain to subside in your left leg? I wonder how long these surgical pains will last!
I understand and I felt the same way! Week 3 and 4 you will find as "golden" weeks. All very suddenly improvement in the pain, discomforts and even the naggy left will start to show good sign of improvement. Having said that; you'll have your dull pains and other pains here and there throughout, but week 3 and 4 always prove to be a milestone; they were for me also, and I have no doubt they will be for you as well. As you enter into week 5, things continue to improve. Around week 6,7,8 you begin to contest with discomfort from tightness and mobility restrictions like leg straightening and posture...and this is due to the lengthening. Stretch and stand up as much as you can, even if not walking. This will help you get to that 2.5-3 inch range without too much posture issues. (Like the ones I had been fighting but thankfully are improving now) It all gets better, guaranteed.
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Do you get muscle cramps during the lengthening phase?
If so, how do you control the pain?
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I understand and I felt the same way! Week 3 and 4 you will find as "golden" weeks. All very suddenly improvement in the pain, discomforts and even the naggy left will start to show good sign of improvement. Having said that; you'll have your dull pains and other pains here and there throughout, but week 3 and 4 always prove to be a milestone; they were for me also, and I have no doubt they will be for you as well. As you enter into week 5, things continue to improve. Around week 6,7,8 you begin to contest with discomfort from tightness and mobility restrictions like leg straightening and posture...and this is due to the lengthening. Stretch and stand up as much as you can, even if not walking. This will help you get to that 2.5-3 inch range without too much posture issues. (Like the ones I had been fighting but thankfully are improving now) It all gets better, guaranteed.
Great reply, I now have something to look forward to. We need to set these small milestones for ourselves to make the process easier and you have given me that, so thank you very much my friend
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Do you get muscle cramps during the lengthening phase?
If so, how do you control the pain?
I wouldn't say what I feel is muscle cramps. It just feels like regular type of pain like an additional level 1 pain added to what's already there. After I finish the session the pain usually goes away on its own. I haven't felt any pain during a lengthening session that would warrant taking an oxy for. And as I've said earlier, I only feel pain on the left leg. That right doesn't respond to the lengthening whatsoever.
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Hey guys, here is a quick update:
Day 12:
Yesterday I've reached 1cm. I also had a PT come to my house. I'm happy to report that according to him I am very flexible and doing great so far in terms of how well I am bending the knee and doing all the other exercises. He even said he was going to contact dr R and update him on my good progress. I asked whether he thinks I should be able to reach the 3 inch mark and he observed that I should have no problems reaching it. I keep my fingers crossed that he is right. I realize that I'm still in the very beginning of this process so I'm not letting anything he said get into my head.
In other news, pain remains at about a 0-1 during the day in my left leg, the right has no pain. Evening time the pain in my left leg reaches a 3 or 4 sometimes but an oxy brings it down to 0-1. Funny thing is, oxy is taking at least an hour and half to start working for me. I don't know if this is a norm or just my body being weird.
I continue using the walker. I haven't tried crutches yet and I asked the PT whether transitioning to crutches would speed up the healing process. He said it makes no difference and I should use what I feel comfortable with. I will ask dr R about this as well when I see him for a follow up next week. I'm also moving faster when walking and I'm putting almost all of my weight on my legs.
I still get 6-8 hrs of sleep every night though it is not uninterrupted sleep. I wake up once at night to pee and once more toward early morning hrs like 5 or 6am. During this time I also get bothered because of discomfort of sleeping on my back. So I try stretching a little and go back to sleep until about 8am.
So that's about it for now. Let me know if you have questions. My plan is to update the forum again in few days after I see dr R for a follow up. Thanks for reading guys.
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Hey ... Tiggy... thanks for the update.. it's great to hear your doing well.. just take it easy and I'm sure you will reach your ... hight goal..,
Panda ;)
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Hey guys, here is a quick update:
Day 12:
Yesterday I've reached 1cm. I also had a PT come to my house. I'm happy to report that according to him I am very flexible and doing great so far in terms of how well I am bending the knee and doing all the other exercises. He even said he was going to contact dr R and update him on my good progress. I asked whether he thinks I should be able to reach the 3 inch mark and he observed that I should have no problems reaching it. I keep my fingers crossed that he is right. I realize that I'm still in the very beginning of this process so I'm not letting anything he said get into my head.
In other news, pain remains at about a 0-1 during the day in my left leg, the right has no pain. Evening time the pain in my left leg reaches a 3 or 4 sometimes but an oxy brings it down to 0-1. Funny thing is, oxy is taking at least an hour and half to start working for me. I don't know if this is a norm or just my body being weird.
I continue using the walker. I haven't tried crutches yet and I asked the PT whether transitioning to crutches would speed up the healing process. He said it makes no difference and I should use what I feel comfortable with. I will ask dr R about this as well when I see him for a follow up next week. I'm also moving faster when walking and I'm putting almost all of my weight on my legs.
I still get 6-8 hrs of sleep every night though it is not uninterrupted sleep. I wake up once at night to pee and once more toward early morning hrs like 5 or 6am. During this time I also get bothered because of the discomfort of sleeping on my back. So I try stretching a little and go back to sleep until about 8am.
So that's about it for now. Let me know if you have questions. My plan is to update the forum again in few days after I see dr R for a follow up. Thanks for reading guys.
Sounds like everything is going great so far. I'm just going to do my daily reminder to stretch those hams, quads and hip flexors! :-) Sounds like your PT routine is covering it all. Good job, buddy.
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Thanks Panda and IFS for your kind replies. You are also doing great IFS, keep up those stretches my friend. It's funny how since surgery, the days have been flying by so quickly. Yet today I'm reaching 11cm, and that seems sooo far from the 75mm I hope to gain and it feels as though it will never happen. I envy you for having completed the distraction phase already! This process requires a lot of patience man
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Day 15: 13.25mm
Guys, as promised, here is my update after seeing dr R for my first follow up since surgery. So far everything is looking good. I am to continue lengthening at the same pace and stretching at the same pace as well. Previously I had expressed concerns that my left leg was growing faster than the right but Dr R officially put that concern to rest. The X-rays show equal distraction and I'm very relieved about that. I am due for another follow up in 2 weeks. Unless something comes up, I will update the forum again after my visit. Thanks for reading.
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Hi tiggy
I am so happy for you that everything is going so well so far. Just one question is that you lengthened 13.25mm in 15 days after surgery. That sounds too fast. How much do you lengthen everyday?
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Hi tiggy
I am so happy for you that everything is going so well so far. Just one question is that you lengthened 13.25mm in 15 days after surgery. That sounds too fast. How much do you lengthen everyday?
Hi Ghostfish,
I am lengthening .25 per day 4 times a day. But for the first 4 days I was lengthening 5 times a day. All of this was per dr Rs instructions. So those first days gave me a nice boost!
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Awesome progress so far Tiggy. We're rooting for you! Couple of questions for you
1) How's your sleep now? Still at 6 to 8 hrs?
2) Are you able to sit down? If so, how long?
3) At this stage, do you still need aide 24/7 or just partial, or nothing at all?
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Awesome progress so far Tiggy. We're rooting for you! Couple of questions for you
1) How's your sleep now? Still at 6 to 8 hrs?
2) Are you able to sit down? If so, how long?
3) At this stage, do you still need aide 24/7 or just partial, or nothing at all?
Hey Alchemist,
1. Yes sleep is still the same
2. I am able to sit down and was always able to. On a chair the longest I've sat was probably around 10 min when doing PT. I'm sure I can sit much longer, I just never tried because I feel more comfortable sitting on my bed with legs extended. These days my butt is feeling more discomfort the longer I sit or even when laying down. This contributes to my taking longer to find a comfortable position to fall asleep in. I hope it starts getting better soon because frankly it's quite annoying!
3. I certainly do not need an aide 24/7. Mostly I just need help with meal preparation and for someone to bring the plates to me. I'm using a walker so there is no way for me to do any of that on my own since those require at least one of your hands to be free. Everything else I do on my own.
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Hey Alchemist,
1. Yes sleep is still the same
2. I am able to sit down and was always able to. On a chair the longest I've sat was probably around 10 min when doing PT. I'm sure I can sit much longer, I just never tried because I feel more comfortable sitting on my bed with legs extended. These days my butt is feeling more discomfort the longer I sit or even when laying down. This contributes to my taking longer to find a comfortable position to fall asleep in. I hope it starts getting better soon because frankly it's quite annoying!
3. I certainly do not need an aide 24/7. Mostly I just need help with meal preparation and for someone to bring the plates to me. I'm using a walker so there is no way for me to do any of that on my own since those require at least one of your hands to be free. Everything else I do on my own.
Hi Buddy, when the time comes - these helped me a ton.
Walker Trays - https://www.amazon.com/Miles-Kimball-4332479062-EasyComforts-Walker/dp/B00BJAC8R8/ref=sr_1_1_sspa?keywords=walker+tray&qid=1559162284&s=gateway&sr=8-1-spons&psc=1
Walker Bags - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_4?keywords=walker+bag&qid=1559162337&s=gateway&sr=8-4
Also, for the walker, concentrate on standing as straight up as possible. You may be doing this already which is golden. I had a tendency to fold over a bit and that again shortens the hip flexors. Stand straight as an arrow on the walker if you can.
Glad to hear things are going pretty darn good.
All The Best,
IFS
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Hi Buddy, when the time comes - these helped me a ton.
Walker Trays - https://www.amazon.com/Miles-Kimball-4332479062-EasyComforts-Walker/dp/B00BJAC8R8/ref=sr_1_1_sspa?keywords=walker+tray&qid=1559162284&s=gateway&sr=8-1-spons&psc=1
Walker Bags - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_4?keywords=walker+bag&qid=1559162337&s=gateway&sr=8-4
Also, for the walker, concentrate on standing as straight up as possible. You may be doing this already which is golden. I had a tendency to fold over a bit and that again shortens the hip flexors. Stand straight as an arrow on the walker if you can.
Glad to hear things are going pretty darn good.
All The Best,
IFS
Hey IFS,
It's as if you are reading my mind man! Just today as I was walking it suddenly hit me that I was hunching over while sticking my butt out. While this would speed up my walk I realized I must stand up straight. Doing so was actually very difficult. I first stood up straight for about 10 min to feel the stretch. Doing that made me realize that I was actually getting tight in that region. Walking up straight is also more difficult and I move much slower but I know that this is the correct way to do this. So thank you so much for looking out for me brother. I wish I could return the favor. Also thank you for the links above.
When were you able to be completely self sufficient in every respect?
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Hey IFS,
It's as if you are reading my mind man! Just today as I was walking it suddenly hit me that I was hunching over while sticking my butt out. While this would speed up my walk I realized I must stand up straight. Doing so was actually very difficult. I first stood up straight for about 10 min to feel the stretch. Doing that made me realize that I was actually getting tight in that region. Walking up straight is also more difficult and I move much slower but I know that this is the correct way to do this. So thank you so much for looking out for me brother. I wish I could return the favor. Also thank you for the links above.
When were you able to be completely self sufficient in every respect?
Glad to assist, man. I would say toward the end of week 3 or 4, I was pretty much independent (in my apartment) meaning that I could go use the restroom, shower (when I really wanted to), make my self some food (Mainly microwavable) and just roam around as I needed to. I'll be honest, I still would give my self a break sometimes and wheelchair my self to get some food. I didn't feel like struggling and going, Ouch, bad word, bad word, ouch, lol, just because I wanted to make a sandwich. With all this in mind, week 3ish, 4ish..things really start to come under control for you, while inside the home. I still needed to be assisted to drive places and I was never really comfortable doing much alone throughout the lengthening process as it related to going outside to places. That is just me, but I relished the support of family. You're on about day 15, so around day 23..24...28ish..etc...things start to take shape. You're on your way!
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Glad to assist, man. I would say toward the end of week 3 or 4, I was pretty much independent (in my apartment) meaning that I could go use the restroom, shower (when I really wanted to), make my self some food (Mainly microwavable) and just roam around as I needed to. I'll be honest, I still would give my self a break sometimes and wheelchair my self to get some food. I didn't feel like struggling and going, Ouch, bad word, bad word, ouch, lol, just because I wanted to make a sandwich. With all this in mind, week 3ish, 4ish..things really start to come under control for you, while inside the home. I still needed to be assisted to drive places and I was never really comfortable doing much alone throughout the lengthening process as it related to going outside to places. That is just me, but I relished the support of family. You're on about day 15, so around day 23..24...28ish..etc...things start to take shape. You're on your way!
Sounds good, and when was it that you could get around without a walker?
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Sounds good, and when was it that you could get around without a walker?
Hmm, for me, it was mid to late month 2. I honestly liked using the walker way more than the crutches. The walker allowed me use it as a stretching apparatus. Additionally, I could open doors, and use my hands with the walker. I resisted moving to crutches but eventually I did want to progress to the next stage... Walker --> Crutches --> Cane --> Unassisted.
I would say around week 6-8, I moved to crutches.
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Hmm, for me, it was mid to late month 2. I honestly liked using the walker way more than the crutches. The walker allowed me use it as a stretching apparatus. Additionally, I could open doors, and use my hands with the walker. I resisted moving to crutches but eventually I did want to progress to the next stage... Walker --> Crutches --> Cane --> Unassisted.
I would say around week 6-8, I moved to crutches.
Well I too hate the crutches and feel much more secure with a walker. I wonder if I can just transition from walker to cane without getting on crutches. This would be a good question to ask my dr during next visit. Today I haven't taken any oxy as dr R urged me to get off them due to the risk for addiction. I won't be taking any tonight before bed just to see how I manage during the night. But the pain in my left leg at the incision site is quite pronounced right now. I just took Tylenol so hopefully that does the trick but I was wondering when that osteotomy site pain went away or significantly decreased for you.
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Well I too hate the crutches and feel much more secure with a walker. I wonder if I can just transition from walker to cane without getting on crutches. This would be a good question to ask my dr during next visit. Today I haven't taken any oxy as dr R urged me to get off them due to the risk for addiction. I won't be taking any tonight before bed just to see how I manage during the night. But the pain in my left leg at the incision site is quite pronounced right now. I just took Tylenol so hopefully that does the trick but I was wondering when that osteotomy site pain went away or significantly decreased for you.
It's interesting how I find that most CLL patients, including my self, hurt more with the left leg, post-surgery. You could actually go from walker to cane if you prefer. Here is one thing I used to do... I would use the Walker to function my everyday life around the apartment such as, use the restroom, get food, go into the shower, work out, etc. The walker allowed me to do much more on the functional side while my legs were still hurting too much to get around safely without assistance. When my left leg was ready and not hurting so much, I would then leverage the walker to get me to my "crutches" which were usually resting somewhere in my living room; which is large and had lots of room to walk. I would abandon my walker at this moment and then use my crutches to exercise and strengthen my legs. The crutches will force you to put more weight on your legs and it also helps you simulate a more normal walking gait, helps you in standing more straight up and down, etc. I would get up and "crutch-walk" 1 time every 40 minutes or so for at least 15 - 20 minutes. This helped me strengthen my legs. You will find that you're able to take unassisted steps very soon here, meaning, no walker, no crutches, etc; but just keep in mind that 2000 crutches steps are WAY more effective than taking 100 unassisted steps and getting too tired and/or risking injury. I can almost promise you that by the time you're done with lengthening that within a couple of weeks you will be walking and starting to shed all assistive devices...so you should feel no rush to graduate to crutches or cane. I know that its a common theme in the forum to try to rush to walking as quickly as possible; but the "robot duck" style of the walk has little benefit to us especially while we are stretching ourselves 1...2...goodness 3 inches! Ha ha. Let me know if you have any questions and you're doing great tiggy. You're right in line with where you need to be and actually sound like you're ahead of the game. Dr. R will likely confirm that again after your next appointment. I'll be here to help; just ping me as needed.
P.S. The pain in left leg (that nasty pain in the side of the leg) started to "chill-out" around week 5-6 for me. It was a lingering thing throughout my entire LL experience. It is completely gone now thankfully. It will go away. Another piece of advise... do not feel that you need to "hurt" your left leg in order to get through the pain. Try to avoid movements that are making you feel to much pain in the left leg. It's just naggy surgery pain. Take it slow.. be sure to put as much weight on the left as possible (even 100% if you can tolerate it).....and take careful steps. CLL in the first 4 week is NOT a "No pain, No Gain" proposition. If you ignite too much pain on the inflamamation areas it will preven you from performing the stretces you need with PT. Nothing is more important than the stretching at this phase.
Remember...
Quads / Hip flexors cause the duck ass (APT)
Hamstrings cause the knee straightening issue
One last thing, ha ha..go a bit further (just a bit) than you are comfortable with during stretching. You'll know why you did when you're all done with lengthening.
I'm here to help! reach out as needed
All the best,
IFS
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It's interesting how I find that most CLL patients, including my self, hurt more with the left leg, post-surgery. You could actually go from walker to cane if you prefer. Here is one thing I used to do... I would use the Walker to function my everyday life around the apartment such as, use the restroom, get food, go into the shower, work out, etc. The walker allowed me to do much more on the functional side while my legs were still hurting too much to get around safely without assistance. When my left leg was ready and not hurting so much, I would then leverage the walker to get me to my "crutches" which were usually resting somewhere in my living room; which is large and had lots of room to walk. I would abandon my walker at this moment and then use my crutches to exercise and strengthen my legs. The crutches will force you to put more weight on your legs and it also helps you simulate a more normal walking gait, helps you in standing more straight up and down, etc. I would get up and "crutch-walk" 1 time every 40 minutes or so for at least 15 - 20 minutes. This helped me strengthen my legs. You will find that you're able to take unassisted steps very soon here, meaning, no walker, no crutches, etc; but just keep in mind that 2000 crutches steps are WAY more effective than taking 100 unassisted steps and getting too tired and/or risking injury. I can almost promise you that by the time you're done with lengthening that within a couple of weeks you will be walking and starting to shed all assistive devices...so you should feel no rush to graduate to crutches or cane. I know that its a common theme in the forum to try to rush to walking as quickly as possible; but the "robot duck" style of the walk has little benefit to us especially while we are stretching ourselves 1...2...goodness 3 inches! Ha ha. Let me know if you have any questions and you're doing great tiggy. You're right in line with where you need to be and actually sound like you're ahead of the game. Dr. R will likely confirm that again after your next appointment. I'll be here to help; just ping me as needed.
P.S. The pain in left leg (that nasty pain in the side of the leg) started to "chill-out" around week 5-6 for me. It was a lingering thing throughout my entire LL experience. It is completely gone now thankfully. It will go away. Another piece of advise... do not feel that you need to "hurt" your left leg in order to get through the pain. Try to avoid movements that are making you feel to much pain in the left leg. It's just naggy surgery pain. Take it slow.. be sure to put as much weight on the left as possible (even 100% if you can tolerate it).....and take careful steps. CLL in the first 4 week is NOT a "No pain, No Gain" proposition. If you ignite too much pain on the inflamamation areas it will preven you from performing the stretces you need with PT. Nothing is more important than the stretching at this phase.
Remember...
Quads / Hip flexors cause the duck ass (APT)
Hamstrings cause the knee straightening issue
One last thing, ha ha..go a bit further (just a bit) than you are comfortable with during stretching. You'll know why you did when you're all done with lengthening.
I'm here to help! reach out as needed
All the best,
IFS
Excellent reply IFS, as usual.
I can easily put full weight on my legs using the walker but what stops me is the paranoia that I will break the nails. I know the nails hold 200lb and I weigh 145 and technically there shouldn't be issues but again it's possible that the nail is defective or something of that nature and that's why I try to be extremely careful. Your suggestion about not hurting the legs too much is golden, I am also of the opinion that creatingr more unnecessary pain on the legs doesn't help the process along. This entire process is a delicate dance!
So far I'm working to fix the slight duck ass I had developed and so far I think I'm doing ok by keeping my posture straight as I walk. I don't have any knee bending issues just yet but I'm sure that's in store for me, after all I'm only hitting 15mm today and I'm still 10 days away from a full inch.
Anyway I'll continue on the walker for another week or so and see how that goes. Thanks again for your helpful and encouraging replies brother, it means the world!
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Excellent reply IFS, as usual.
I can easily put full weight on my legs using the walker but what stops me is the paranoia that I will break the nails. I know the nails hold 200lb and I weigh 145 and technically there shouldn't be issues but again it's possible that the nail is defective or something of that nature and that's why I try to be extremely careful. Your suggestion about not hurting the legs too much is golden, I am also of the opinion that creatingr more unnecessary pain on the legs doesn't help the process along. This entire process is a delicate dance!
So far I'm working to fix the slight duck ass I had developed and so far I think I'm doing ok by keeping my posture straight as I walk. I don't have any knee bending issues just yet but I'm sure that's in store for me, after all I'm only hitting 15mm today and I'm still 10 days away from a full inch.
Anyway I'll continue on the walker for another week or so and see how that goes. Thanks again for your helpful and encouraging replies brother, it means the world!
Glad to assist. Regarding Duck Ass; in addition to the quad and hip stretches, also see about incorporating some glute/lower ab exercises if not already. Whatever you can tolerate at this stage, of course. I know it can be painful.
I understand the paranoia. Rest assured, however; that the nails will not break. You're safe and secured on those metal rods.
Talk soon!
IFS
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Can you walk up/down the stairs with the Stryde in your femurs? How soon, a week or two or within a month?
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Glad to assist. Regarding Duck Ass; in addition to the quad and hip stretches, also see about incorporating some glute/lower ab exercises if not already. Whatever you can tolerate at this stage, of course. I know it can be painful.
I understand the paranoia. Rest assured, however; that the nails will not break. You're safe and secured on those metal rods.
Talk soon!
IFS
What would be some glute/lower an exercises IFS?
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Can you walk up/down the stairs with the Stryde in your femurs? How soon, a week or two or within a month?
Azman,
I walked up the stairs in my house 2 weeks post op in order to take a shower (my shower is upstairs). To do this I used a walker to get to the staircase and then while holding on to the rails with one hand I used a crutch to give me support to go up. This is what the PT showed me when he came over. The same process is used to go back down. However I was completely drained of energy after this trip up and down.
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Hey everyone,
A quick update, I am 3 weeks post op and will be hitting 19mm today. I also drove my car today for the first time since surgery! The trip wasn't a long one, I'd say about 3-4 miles back and forth but it felt very good to get out of the house and do something on my own. My right leg did get a little tired so I really wouldn't drive somewhere much farther away, still it was a nice trip. Being stuck in the house is starting to get to me but I just need to suck it up and push on.
Another update re sleeping, I must say I slept better during the first week post op than I do now. Now I get sore from sleeping on my back and my legs actually get tired from being stretched out all night. So I try sleeping on my sides. Because sleeping on my sides is still uncomfortable, I wake up often to switch sides. But again I must say that I feel progress on that front because it does get slightly easier to sleep on the sides with each passing day. I imagine that within a week or 2 it will get significantly easier and less uncomfortable. That's it for now guys. I'm seeing dr R next week for a follow up and will update the forum accordingly. Be well.
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Hey, tiggy. Thank you very much for the diary. Very kind of you to share your experience with us here. Wishing you the best of luck through the entirety of your CLL journey.
Do you want to share more on how you came across CLL, your motivations for it, and what made you decide to finally go with it?
All the best, man.
MLA
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Hey, tiggy. Thank you very much for the diary. Very kind of you to share your experience with us here. Wishing you the best of luck through the entirety of your CLL journey.
Do you want to share more on how you came across CLL, your motivations for it, and what made you decide to finally go with it?
All the best, man.
MLA
Hey man, thanks for your wishes. Sure thing.
I wanted to do LL because at my height of 5'3 life isn't easy. Other males don't take you very seriously and overall I just felt insecure around other men and women who were taller than me. After this surgery I will hopefully be 5'6 and while that is not tall or even average for males in US, it is still a decent height when wearing shoes. Even with regular dress shoes I would be 5'7 and to me that is a decent height. Moreover, I would no longer stick out in the crowd as the shortest guy, and that, in and of itself, means a great deal to me.
I first learned of LL about 7 yrs ago, I believe it was from the old forum community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.
I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.
Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.
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Hey man, thanks for your wishes. Sure thing.
I wanted to do LL because at my height of 5'3 life isn't easy. Other males don't take you very seriously and overall I just felt insecure around other men and women who were taller than me. After this surgery I will hopefully be 5'6 and while that is not tall or even average for males in US, it is still a decent height when wearing shoes. Even with regular dress shoes I would be 5'7 and to me that is a decent height. Moreover, I would no longer stick out in the crowd as the shortest guy, and that, in and of itself, means a great deal to me.
I first learned of LL about 7 yrs ago, I believe it was from the old forum community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.
I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.
Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.
Thank you very much for sharing your story, tiggy.
If it's also not too personal, may I ask how you went about preparing for the logistics and the finances for CLL during these last 7 years?
Wishing you the best, and a safe lengthening journey!
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Thank you very much for sharing your story, tiggy.
If it's also not too personal, may I ask how you went about preparing for the logistics and the finances for CLL during these last 7 years?
Wishing you the best, and a safe lengthening journey!
Not exactly sure what you mean by logistics but in terms of paying for it, 7 years is a long time to save if you spend little. As they say, if there is a will there is a way. Thanks for reading.
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I first learned of LL about 7 yrs ago, I believe it was from the old forum community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.
I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.
Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.
Thank you for sharing your story. I connected with this in so many ways. The key take away for me was time is valuable. Such a painful yet powerful experience this is. The realization and perspective that time is valuable and taking action through LL, while at the same time, embarking on one of the longest, most painful journeys through LL. I've never felt this level of anxiety, fear and optimism all at once.
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Thank you for sharing your story. I connected with this in so many ways. The key take away for me was time is valuable. Such a painful yet powerful experience this is. The realization and perspective that time is valuable and taking action through LL, while at the same time, embarking on one of the longest, most painful journeys through LL. I've never felt this level of anxiety, fear and optimism all at once.
Hey Alchemist,
The things you are feeling are totally normal and I had the exact same feelings. In fact, as I was being wheeled into the OR I still couldn't believe that I was about to have my perfectly healthy legs broken and all because of my mental height dysphoria. But I also knew it was too late to turn back and at that point you just let go. Honestly this experience, so far, has been nowhere near as difficult pain wise as I've imagined and read about on this forum. Perhaps it's because of the Stryde nail, perhaps it's the drs skill, or maybe it's just my own body's reaction to this or maybe it's a little bit of each. Either way there are so many people out there who are dealing with death and loss of a kind someone healthy can hardly imagine. My point is, take the plunge if you know it must be done, try to minimize anxiety and fear by realizing how lucky you are to be healthy and able to do something like this, deal with discomfort for 3 months and move on. Live your life the best you can, do what makes you happy and hope for a long and healthy life. It's such a simple concept yet often overlooked and overthought by many, including myself (until this horrific news came my way 3 months ago). It's interesting actually because as soon as I found out about it, I literally called dr Rs office within I think 3 days to schedule a consultation. I had surgery about 2 months later. So you can see the impact all of this had on me. And guess what, I don't regret a single thing. Of course I may regret it later but I hope not and I doubt I will knowing myself. Sorry for the long speech but I thought it important to share this with the community.
Also, for those reading, please do not take this post as an encouragement to proceed with this surgery with sub par drs at sub par facilities. It is immensely important who you choose as your surgeon and if I wasn't truly at peace with my choice, I would never had put my health and healthy legs at such a risk. Please do your due diligence because you owe it to yourself. Be well.
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Hey guys, I've hit 22cm today and I'm having somewhat of an issue. Since yesterday the front portion of my right tibia has been getting numb. First it would appear when my leg was motionless for a few minutes, for example when sitting or laying on my stomach. Today it's been more frequent and the numbness extends to my knee if I don't shake off my leg and switch positions. I've contacted dr R and he advised that I slow down to 3 times a day. I'm very upset about this because it means the lengthening phase will be extended. My question for those LL veterans reading, have you experienced something similar and has the numbness subsided for you? If so what caused the numbness to go away? I'm just worried that if it doesn't go away after I drop down to 3 sessions a day, I may be forced to stop so as not to cause nerve damage. Any and all responses are welcome
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Hey guys, I've hit 22cm today and I'm having somewhat of an issue. Since yesterday the front portion of my right tibia has been getting numb. First it would appear when my leg was motionless for a few minutes, for example when sitting or laying on my stomach. Today it's been more frequent and the numbness extends to my knee if I don't shake off my leg and switch positions. I've contacted dr R and he advised that I slow down to 3 times a day. I'm very upset about this because it means the lengthening phase will be extended. My question for those LL veterans reading, have you experienced something similar and has the numbness subsided for you? If so what caused the numbness to go away? I'm just worried that if it doesn't go away after I drop down to 3 sessions a day, I may be forced to stop so as not to cause nerve damage. Any and all responses are welcome
Hi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary. I first became numb in the left and then in the right. These are superficial nerves that are being stretched out and hence are starting to feel numb. At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol). Other discomforts are at night time. Almost felt like tiny little explosions/tingling as the days would wear on. 2 months now, post lengthening, I have most feeling back in shins and it continues to improve. I would not worry about anything until you absolutely need to. When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order. You're good to go; but of course monitor closely. My main take away I want you to have from this post is to not worry about this. Most all CLL patients will experience numbness in at least one of their shins. It's something that you usually will push through and feeling comes back.
Let me know if you have any additional questions.
All the best,
IFS
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Hi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary. I first became numb in the left and then in the right. These are superficial nerves that are being stretched out and hence are starting to feel numb. At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol). Other discomforts are at night time. Almost felt like tiny little explosions/tingling as the days would wear on. 2 months now, post lengthening, I have most feeling back in shins and it continues to improve. I would not worry about anything until you absolutely need to. When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order. You're good to go; but of course monitor closely. My main take away I want you to have from this post is to not worry about this. Most all CLL patients will experience numbness in at least one of their shins. It's something that you usually will push through and feeling comes back.
Let me know if you have any additional questions.
All the best,
IFS
Hey IFS,
Thank you so much for putting my mind at ease. Dr R said it sounds like a stretch on a sensory nerve and dropping down to 3 sessions a day usually resolves the problem. I really hope he is right because if numbness came on this early, dealing with it for another 2 months is going to be hell. Did you slow down your pace of lengthening after the numbness came on?
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Hi Tiggy,
I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days. As a result, I would skip sessions here and there all the time. My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process. I even took as much as a day or two off in order to ease the pressure. If not for the 'breaks" I would have never gotten through to 3 inches. As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.
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Hi Tiggy,
I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days. As a result, I would skip sessions here and there all the time. My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process. I even took as much as a day or two off in order to ease the pressure. If not for the 'breaks" I would have never gotten through to 3 inches. As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.
All of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!
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All of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!
I understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th. :-)
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I understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th. :-)
Ah so you were almost in that 90 day span! Good to know, I'll keep that in mind. Thanks!
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Hey,
Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet. I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.
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Hey,
Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet. I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.
Hi tiggy
I think that is probably due to the extension of nerve. I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs. I don't know whether you did IT band release. If not, you may need to do that. If so, you just need to hang in there. Stretching, walking, and slow extension could help.
The thing is after lengthening done, this burning and numbness have been gone :)
Stay strong!
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Hi tiggy
I think that is probably due to the extension of nerve. I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs. I don't know whether you did IT band release. If not, you may need to do that. If so, you just need to hang in there. Stretching, walking, and slow extension could help.
The thing is after lengthening done, this burning and numbness have been gone :)
Stay strong!
Thanks for responding Ghostfish.
Yes I did have IT band release on both legs. It's good to know that your symptoms went away after you stopped lengthening. Do you recall how long after you stopped lengthening that they went away? Also, did you take anything for the pain while your symptoms lasted? If so, did that help you manage the situation?
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Hi tiggy
I didn't take any special medicine for nerve pain other than oxycodone which doesn't really do much for nerve pain. The problem went away about one month after lengthening, perhaps a little longer. Other patients also did have similar pain or problem but they managed to finish lengthening. I am not 100% sure about your case, since I am not a doctor. So discuss it with Dr. R.
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Thanks for responding Ghostfish.
Yes I did have IT band release on both legs. It's good to know that your symptoms went away after you stopped lengthening. Do you recall how long after you stopped lengthening that they went away? Also, did you take anything for the pain while your symptoms lasted? If so, did that help you manage the situation?
Tiggy may i ask what was the original Length of your femur before surgery ?
& Did IT Band help at all or what, becuase you shouldnt be feeling such tension at only 2.4 cm i guess, right?
plus what are you aiming for in femur ? 6cm? or do you think you can go up to 8cm...?
also i forgot are you the one that did tibia and is now doing femur or this is your first time?
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Hi tiggy
I didn't take any special medicine for nerve pain other than oxycodone which doesn't really do much for nerve pain. The problem went away about one month after lengthening, perhaps a little longer. Other patients also did have similar pain or problem but they managed to finish lengthening. I am not 100% sure about your case, since I am not a doctor. So discuss it with Dr. R.
Yea I will discuss the options with him. Your reply was very helpful though, thank you
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Tiggy may i ask what was the original Length of your femur before surgery ?
& Did IT Band help at all or what, becuase you shouldnt be feeling such tension at only 2.4 cm i guess, right?
plus what are you aiming for in femur ? 6cm? or do you think you can go up to 8cm...?
also i forgot are you the one that did tibia and is now doing femur or this is your first time?
Hi there,
I don't have the measurements of my femur before surgery because I never cared to take that information down. I did have IT Band release and I think my nerve pain has nothing to do with that because I don't feel all that tight right now. My flexibility at the moment is actually excellent and I wasn't foreseeing having serious tightness issues until about 5cm actually. So this nerve pain really took me by surprise and I guess it's just bad luck since it seems I am having it earlier than other patients.
My goal was to go 7.5-8cm since I am not planning to have tibias done in the future. I'd like to do all I can to reach that goal but it's going to be extremely difficult if things stay the way they are, or even worsen. Not to mention that the burning sensation really hinders my PT because I can't stay in one position for more than a few minutes. this is why I hope my dr prescribes something that helps with this nerve situation. I will be hitting 1 in today so I'm not even half way done yet, so you can imagine my frustration. I was scheduled to see him Thursday for a follow up but now I may schedule it for tomorrow. Either way I will update the forum once I speak to him.
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More experience info on this - I can remember, as I approached 2 inches, I had numbness and that tingling burning sensation for almost every night thereafter. All the discomfort went away and I got my feeling back about 30 days after I completed lengthening.
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More experience info on this - I can remember, as I approached 2 inches, I had numbness and that tingling burning sensation for almost every night thereafter. All the discomfort went away and I got my feeling back about 30 days after I completed lengthening.
Hey man,
Yea you mentioned something of the sort. Like you I just have to push through this somehow. I want those 2 extra inches too much! I just hope dr R tells me it's safe to go forward, I don't need any more surprises lol. Right now I have that end goal in mind and it will feel amazing to conquer all this and reach that final point. I won't quit until dr R himself tells me to stop. Just gotta suck it up and push through this!
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Guys I just realized that I've been so busy complaining about my right leg numbness that I forgot to update on the latest developments in terms of recovery and height gain!
So today I am officially 1 inch taller. I don't notice a significant difference between being 5'3 and 5'4 lol but it does feel great to finally be taller than my mom and my sister (who are both 5'3). I keep picturing how amazing it would feel to be a whole 3 inches taller than them if I reach my goal of 5'6. Other than that, I now can get up from my bed or couch by pushing off with my hands alone and I don't need to hold on to the walker in order to stand up on my feet. Of course the lower the seating surface, the more help I need to push off by using the walker. For example when I use the toilet, I need the walker to lift me up because the seat is too low.
In terms of pain, I've had 0 pain since the 2nd week post op (until the nerve pain kicked in 3 days ago). Currently I only take 2 Tylenol pms before bed because I notice my sleep is better while on it. I also take aspirin and the vitamins I am prescribed. I will finish the prescription meds in few days and will only be taking vitamins. I am looking forward to this because I hate ingesting chemicals.
That's about it in terms of the most recent updates. As always, I'm open to questions. Thanks for reading.
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Guys I just realized that I've been so busy complaining about my right leg numbness that I forgot to update on the latest developments in terms of recovery and height gain!
So today I am officially 1 inch taller. I don't notice a significant difference between being 5'3 and 5'4 lol but it does feel great to finally be taller than my mom and my sister (who are both 5'3). I keep picturing how amazing it would feel to be a whole 3 inches taller than them if I reach my goal of 5'6. Other than that, I now can get up from my bed or couch by pushing off with my hands alone and I don't need to hold on to the walker in order to stand up on my feet. Of course the lower the seating surface, the more help I need to push off by using the walker. For example when I use the toilet, I need the walker to lift me up because the seat is too low.
In terms of pain, I've had 0 pain since the 2nd week post op (until the nerve pain kicked in 3 days ago). Currently I only take 2 Tylenol pms before bed because I notice my sleep is better while on it. I also take aspirin and the vitamins I am prescribed. I will finish the prescription meds in few days and will only be taking vitamins. I am looking forward to this because I hate ingesting chemicals.
That's about it in terms of the most recent updates. As always, I'm open to questions. Thanks for reading.
Congrats on that first inch! Time seems to be flying by and and the huge progress so far, already 1/3 of the way there and past what many describe as the hardest part!
How's the numbness moving along? As well as overall pain management and sleep?
Thanks
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Congrats on that first inch! Time seems to be flying by and and the huge progress so far, already 1/3 of the way there and past what many describe as the hardest part!
How's the numbness moving along? As well as overall pain management and sleep?
Thanks
Hey Alchemist,
Thanks. However those weeks were nowhere near the hardest part. For me now is the hardest. The pain in my right shin hasn't improved at all. It has in fact worsened. The burning and numbness is now accompanied with some episodes of severe pins and needles sensation. On a few occasions that pain has reached a 7-8. I now walk by trying to keep weight off my right leg. Dr R has put me on neurontin, first it was 100mg 3 times a day but that did nothing. Since yesterday he increased it to 200mg 3 times a day but I don't feel much difference. I am also now lengthening my left leg 3 times a day and the right only 2 times to help improve my symptoms. If things don't improve in couple of weeks, I may need a neuroplasty procedure to locate the nerve and check for abnormalities that may be causing me this headache. Dr R does not perform this procedure and he referred me to someone else for it. I still haven't made the decision and will wait at least another week to see how I feel. But something tells things will not improve by taking 200 mg of neurontin and lowering the lengthening to 2 sessions a day. We will see how it goes.
As to sleep, I sleep well, at least 8 hrs a day. I wake up at night to change sides because sleeping on my side is the only thing that alleviates the pain for me. That's about it for now. Thanks for checking in on me though, much appreciated. Feel free to send questions my way if need be.
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Tiggy, thanks for the update. Thoughts are with you, hoping this numbness passes with time. Please keep us updated with your progress. Rooting for you man!
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Tiggy, thanks for the update. Thoughts are with you, hoping this numbness passes with time. Please keep us updated with your progress. Rooting for you man!
Will do, thanks brother
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Hey Tiggy, how's it going? How are you managing the numbness?
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Hey Tiggy, how's it going? How are you managing the numbness?
Hey Alchemist,
Thanks for checking in. Numbness is the same but my symptoms have improved. He doubled my gabapentin dose and I'm lengthening 2 times on the right leg and 3 times on the left. I noticed less burning now and less of the pins and needles sensation, though both are still there. Point is that now they are much more manageable. The annoying part is that the pace is slow which means if I keep lengthening only twice on the right leg, it will double the lengthening time for me. I do hope that when I see him next week that he will allow me to increase the pace on the right leg. We will see what he decides.
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Hi tiggy
sorry to hear that you have problems that cause you to slow the pace. As I mentioned above, most of problems are due to lengthening/extending. I think your case is likely the same, since you do feel better after slowing down the pace. It is a sort of tug of war between contraction forces by your tissues (muscles, tendons, and nerves) and extension forces by lengthening and physical therapy. It is a losing game in the end but everyone is different so it is the matter of when it happens to people. Unfortunately, it seems to happen too early for you. You just have to go through it by doing enough PT and adjusting lengthening rate. I do want to tell you that nerves or muscles seem to adjust themselves at some point, meaning that they may react at the beginning but adjust themselves a little bit to face their new environments. For example, I had a burning sensation in my right leg around knee at the beginning which made me so hard to stretch the knee. Later on (I don't remember exactly when, perhaps around 5-6 weeks lengthening), my right leg got better but left leg started to feel the same burning feeling during stretching. Anyhow, I just managed to finish all my journey. You can do it too!
Good luck!
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Hi tiggy
sorry to hear that you have problems that cause you to slow the pace. As I mentioned above, most of problems are due to lengthening/extending. I think your case is likely the same, since you do feel better after slowing down the pace. It is a sort of tug of war between contraction forces by your tissues (muscles, tendons, and nerves) and extension forces by lengthening and physical therapy. It is a losing game in the end but everyone is different so it is the matter of when it happens to people. Unfortunately, it seems to happen too early for you. You just have to go through it by doing enough PT and adjusting lengthening rate. I do want to tell you that nerves or muscles seem to adjust themselves at some point, meaning that they may react at the beginning but adjust themselves a little bit to face their new environments. For example, I had a burning sensation in my right leg around knee at the beginning which made me so hard to stretch the knee. Later on (I don't remember exactly when, perhaps around 5-6 weeks lengthening), my right leg got better but left leg started to feel the same burning feeling during stretching. Anyhow, I just managed to finish all my journey. You can do it too!
Good luck!
Thanks for your comment Ghostfish,
This LL journey is quite something I must say! I am more optimistic now that I have these symptoms at least a little more under control. I realize I am only at around 3 cm, meaning I'm not even half way done so tightness is going to get intense the more I lengthen, though I guess the benefit of going slow for now is that tightness should be more manageable. But again I may need to speed things up in the future, thus it's hard to predict how things will go with this surgery. But at least for now the process is a little easier since I no longer feel like someone is inserting knives into my tibias. At the end of the day, the most important thing is to reach that final goal irrespective of the lengthening pace. Im hopeful that I can do this successfully just like you and others on here. Let's see!! Thank you for your words of encouragement.
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Hey Tiggy,
How's everything going? Would be great to hear about your progress.
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Hey man,
I haven't updated the forum because everything is pretty much the same. I'm still on 200 mg gabapentin 3 times a day. My symptoms have improved in terms of burning and the pins and needles sensation. Before I couldn't even put my full weight on my right leg but now I can do so. But again all those symptoms are still there, numbness is there though burning is much less. These days I try avoiding contact with fabric because it's very painful. The left leg is doing well but now I'm also having numbness in my left shins. However that numbness is not permanent and disappears once I shake off the leg. I hope it stays that way instead of becoming permanent, then again I'm already used to the process given the headache wth my right leg, so come what may.
When my right leg symptoms improved I began to lengthen my right leg 3 times a day instead of alternating between 2 times one day and 3 times the next. However when I saw dr R this week he told me to continue alternating between 2 and 3 times on the right leg because the callus formation is slower than it is in the left leg. I'm upset about the slow callus growth on the right leg because it prevents me from lengthening faster. My plan is to put more weight on my right leg until I see him again in 3 weeks. Hopefully there will be more progress in few weeks. Dr R didn't raise alarms about the slow callus formation given I'm only about 7 weeks post op but I am personally concerned and quite irritated.
Anyway that's about it as far as updates are concerned. In terms of mm lengthened, I'm at around 35mm on the right and almost 38 on the left. I can't wait to hit 50mm. By my calculations, I should be at around 50mm next time I see him. From there on I will have 30mm left and mentally that should be an easier target to overcome. Anyway I won't jump ahead, let's see what happens. Thanks for your post!
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Hi tiggy
I am glad that things are a little getting better. As I told you, I also had that sort of sensations and hated touching fabric on the bed. They will be gone 1-2 months after you stop lengthening.
Regarding callus, as you know, you have to walk and stand as much as possible in order to stimulate bone growth. And Stretch and stretch!
Take care!!
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Hi tiggy
I am glad that things are a little getting better. As I told you, I also had that sort of sensations and hated touching fabric on the bed. They will be gone 1-2 months after you stop lengthening.
Regarding callus, as you know, you have to walk and stand as much as possible in order to stimulate bone growth. And Stretch and stretch!
Take care!!
Yea truthfullly I haven't been doing enough walking lately. I did more in the beginning but then after the right leg troubles appeared I slowed my pace. Sometimes even now I'd be reading a book for example and time would pass by and I'd forget that I need to get up and walk. Starting today though I'm going to walk with most weight on the right leg until legs can't take it anymore! The curious thing is that even with less walking in the past few weeks, the callus formation is doing well on the left leg, it's the right that's lagging behind. So this makes me think that perhaps the walking amount itself wasn't an issue, it was mainly that I didn't put enough weight on the right leg when doing so. But either way I'm going to increase both.
It's interesting you brought up stretching. Does more stretching promote callus formation? I haven't heard of this before.
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Thanks Tiggy. Glad to hear that the numbness and burning is improving. I'm amazed at your progress and coming up to 5 cm soon. That's a huge milestone.
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It's interesting you brought up stretching. Does more stretching promote callus formation? I haven't heard of this before.
No, I didn't say stretching for callus formation :) I said that because stretch will help your burning or numbness.
Regarding discrepancy in bone growth, it is probably due to the way you walk or stand since you put more weight on the left leg. In any case, don't worry. As long as there is a decent amount of callus formation, after stopping lengthening, bones grow much better!
Take care!
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Thanks for the encouraging words guys, I really appreciate them. The 5cm mark is still a few weeks away but I'm hoping that time goes by quickly.
I wanted to take a moment and quickly discuss how I've been coping mentally with being cooped up at home for the past 7 weeks. This process has been challenging in that sense, especially because I know I have at least another 8-12 weeks left until I finish lengthening (assuming no other complications). Today the weather was nice and I went out in the yard to soak up some sun. I felt like a caveman seeing the sun for the first time lol. But it felt quite nice because I felt more normal. Staying at home for so long without interacting with the outside world can make you feel abnormal and so I can't wait to reintegrate into my life, but with the new height! I've been fortunate enough to have my family by my side and that has helped a great deal because at least I get to interact with them. It would be wise for future llers to try and get fresh air as much as possible. I wasn't doing that myself unless I went out to see dr R but I now plan to come out as much as possible and soak up the sun for as long as tolerated. I say tolerated because my right leg starts giving me a headache after being put in the same position for long and so I must maneuver my body into the position that alleviates the pain for me. And of course it is easier to do this in bed than sitting on a chair outside.
As to the new height, I have almost reached the half way mark and I feel a significant difference in height already. I'm taller than my sister and my mom by a good margin. My cousin was also taller than me prior to surgery and now I'm almost at her height (she is around 5'5). It makes me feel quite excited that in another couple of months I will be even taller than them and I can't wait to experience that additional height. Moreover, with shoes on it would feel even better! Keeping this image of yourself in mind is really a powerful motivator, and as you see results in height, that motivation, at least for me, intensifies.
Anyway that's about it for my long update. I plan to update the forum again once I reach the 50mm mark. Stay tuned and be well!
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You're on your way, Tiggy. The process is tough as you mention and I can assure you it's worth every single moment of sacrifice. We'll keep it going strong!
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You're on your way, Tiggy. The process is tough as you mention and I can assure you it's worth every single moment of sacrifice. We'll keep it going strong!
Absolutely IFS! We must fight through the hardships along the way to reach that dream goal. In fact I was thinking of you just a couple of days ago when I was admiring my almost 2 inch height in front of the mirror lol and I realized how truly life changing this surgery was for you. Going from 5'1 to 5'4 is such a tremendous accomplishment. I started from 5'3 and I'm hovering at almost 5'5 and already notice such a big difference even though I haven't even reached that 2 inch mark yet. In other words, this surgery was worth it for you and I'm glad you feel that way brother! Be well.
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Hey guys,
A quick update: today I've reached the half way mark on the left leg. I am at exactly 40mm but the right leg will get there in a few days. In other news, I am able to walk without any support whatsoever. I do carry the walker with me, literally I lift up the walker and walk with it or push it ahead of me just so that it is near if I need it. I walk quite fast too and It feels awesome being able to walk completely on my own. My speed of walking actually surprised me. The only thing is that I walk like a penguin, swaying side to side lol. I am sure that will improve with time as I continue walking.
I have not done any PT from outside sources, meaning I do PT on my own and do not have anyone come in to my home. Neither do I frequent a PT clinic. I am still undecided whether I will even go to one once I am done with lengthening but so far I am leaning against doing so. I think I can continue working at this on my own, and quite frankly I enjoy doing so without 3rd sources present. But again this will depend on my progress and I will assess the situation as I go along. I will update you guys again once I reach that sweet 50mm mark! Feel free to send questions my way. Cheers!
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Hey guys,
A quick update: today I've reached the half way mark on the left leg. I am at exactly 40mm but the right leg will get there in a few days. In other news, I am able to walk without any support whatsoever. I do carry the walker with me, literally I lift up the walker and walk with it or push it ahead of me just so that it is near if I need it. I walk quite fast too and It feels awesome being able to walk completely on my own. My speed of walking actually surprised me. The only thing is that I walk like a penguin, swaying side to side lol. I am sure that will improve with time as I continue walking.
I have not done any PT from outside sources, meaning I do PT on my own and do not have anyone come in to my home. Neither do I frequent a PT clinic. I am still undecided whether I will even go to one once I am done with lengthening but so far I am leaning against doing so. I think I can continue working at this on my own, and quite frankly I enjoy doing so without 3rd sources present. But again this will depend on my progress and I will assess the situation as I go along. I will update you guys again once I reach that sweet 50mm mark! Feel free to send questions my way. Cheers!
Congrats on reaching the halfway point on the left leg, huge milestone!
Sounds like you are pretty mobile and taking a lot of steps walking, which seems like a good source of PT itself. Apart from doing PT, how do you spend the majority of your time? Laying in bed, standing, or sitting? I'm particularly interested in your ability to sit down for long periods of time, as I'm hoping I can use the idle time towards hobbies and side projects that require I sit down (working on laptop, playing piano, etc.)
Thanks!
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Congrats on reaching the halfway point on the left leg, huge milestone!
Sounds like you are pretty mobile and taking a lot of steps walking, which seems like a good source of PT itself. Apart from doing PT, how do you spend the majority of your time? Laying in bed, standing, or sitting? I'm particularly interested in your ability to sit down for long periods of time, as I'm hoping I can use the idle time towards hobbies and side projects that require I sit down (working on laptop, playing piano, etc.)
Thanks!
Hey there, thanks. As of 2 days ago, both legs are past the half way mark!
As to your question, I spend the majority of my time either in bed or in a reclining chair. I sit down to have dinner at the table but that is the only time you can find me sitting in a chair. The reason for that is when I sit for over 5 or so minutes, my legs start to burn and I need to lift them up. The numbness I described above is now permanently present on my left leg, coupled with slight burning sensation. So now I must deal with both legs and switch them around in a sitting position. You can easily work on your computer while in bed or reclining. How long you can play piano would depend on your particular situation. Just because I have numbness issues doesn't mean you will also. Perhaps other veterans can chime in on how well they could tolerate sitting up straight.
When not doing PT, I read (when I can focus) or watch a movie/show. Other times I just spend time with family when everyone is home from work. Sometimes time goes by quickly but other times it's quite slow. Hopefully the remaining half of this trip passes by faster! Let me know if you need to know anything else.
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Hey there, thanks. As of 2 days ago, both legs are past the half way mark!
As to your question, I spend the majority of my time either in bed or in a reclining chair. I sit down to have dinner at the table but that is the only time you can find me sitting in a chair. The reason for that is when I sit for over 5 or so minutes, my legs start to burn and I need to lift them up. The numbness I described above is now permanently present on my left leg, coupled with slight burning sensation. So now I must deal with both legs and switch them around in a sitting position. You can easily work on your computer while in bed or reclining. How long you can play piano would depend on your particular situation. Just because I have numbness issues doesn't mean you will also. Perhaps other veterans can chime in on how well they could tolerate sitting up straight.
When not doing PT, I read (when I can focus) or watch a movie/show. Other times I just spend time with family when everyone is home from work. Sometimes time goes by quickly but other times it's quite slow. Hopefully the remaining half of this trip passes by faster! Let me know if you need to know anything else.
Hi tiggy
I am sorry to hear that you are struggling with those numbness and burning sensation. But I strongly recommend you to stand or to walk as much as possible. Spending too much time on bed or even a reclining chair is not really good for lengthening and callus formation. Thanks to Stryde, you can also walk. So make your legs move more!
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Hi tiggy
I am sorry to hear that you are struggling with those numbness and burning sensation. But I strongly recommend you to stand or to walk as much as possible. Spending too much time on bed or even a reclining chair is not really good for lengthening and callus formation. Thanks to Stryde, you can also walk. So make your legs move more!
Hey Ghostfish,
Thanks for looking out for me! I do walk, I just didn't list it thinking it was self explanatory. I walk around the house unassisted and do so as much as I can. Some days I walk more, others less. I'm going to start counting the number of steps I take each day, though I don't know how many steps would be normal during this phase of lengthening, perhaps you know? I'm determined to see more callus in my next x ray, especially in my right leg!
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Hey Tiggy, how is it going?
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Hey Tiggy, how is it going?
Hey Alchemist (cool name btw, I've wanted to complement you for a while lol)
Things are going well, same old. I was waiting to hit 5cm to update the forum, but might as well do it now. Left leg Will hit 4.8 cm Today and the right 4.5. I have had permanent numbness in my left shin as well, accompanied with numbness and some prickly feelings from time to time (usually when I stand on the leg for too long). The right leg is also numb, though doesn't really burn anymore. It's funny how during this process nothing stays the same and the discomfort switches from one leg to the other. Just when you think you have one of your legs where you want it, just then the other leg starts to act up.
I'm still lengthening the left 3 times a day and the right only 2. I am due for a follow up this coming week with dr. R and I hope the callus formation has improved on the right enough to allow at least 3 sessions a day. I have been putting a lot of weight on my right leg so I hope it pays off.
In terms of tightness and flexibility, 10 being totally normal as pre-op and 1 being super tight, my right leg is at about a 9 while the left is about an 8. This is to be expected since I'm lengthening slightly faster on the left leg.
In other news, I am walking unassisted 99% of the time whether at home or outside. I actually went out to eat with my sister on Friday evening. I walked unassisted from the car to the restaurant and back, and even drove home (though the right leg does start to hurt when driving after about 10min). Last night too, I went out with my family and again was unassisted the entire time, though there were some steps to climb so I used my sister as support for that part since the legs aren't strong enough yet. I'm sure I could climb on my own but I don't want to put unnecessary pressure on my legs and potentially damage something. I must say it felt good to be outside, sit at a restaurant and feel normal. The height boost is certainly noticeable and I can't wait to reach the 3 inch mark!
Lastly, I've attempted to stand up from my bed unassisted about a week ago, and while that was certainly challenging, I succeeded. Since then I haven't tried again because I don't want to put too much pressure on my legs but perhaps I'll do so again soon. However, my bed is not as low as a couch for example, and so I haven't attempted to stand up from a couch unassisted and I know that will be much more difficult. Perhaps I'll give it a try sometime soon.
That's pretty much it as far as updates go. I still stretch 3 times a day (instead of 4) because stretches take longer for me now. This is because when in the same position, my left leg starts to burn and I must change position for about a minute or 2 to let the feeling pass. Then I go back to finishing the exercise. And I repeat this about every 3-5 min because of the burning. So you can see how this adds to the length of time it takes to complete the stretching routine. I think stretching at least 3 times is fine at this point, especially because I'm lengthening the left leg 3 times instead of 4. Plus I walk quite a lot too so for now I think this is sufficient. Once I get more tight (and hopefully if my left leg burning subsides) I can ramp up the stretching to 4 times a day. We will see how things go and how tight I feel in the coming weeks.
If you have questions, throw them my way. Otherwise I will update again at the end of next week once I see him for a follow up. Thanks for reading.
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Nice Tiggy! Awesome progress- must feel amazing to be well past the halfway mark and moving closer and closer day by day.
I read earlier that you stopped taking pain meds. Do you think that if you continued with them they would help manage the burn and allow you to keep at it with 4 sessions/day? Also, how is your sleep going?
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Nice Tiggy! Awesome progress- must feel amazing to be well past the halfway mark and moving closer and closer day by day.
I read earlier that you stopped taking pain meds. Do you think that if you continued with them they would help manage the burn and allow you to keep at it with 4 sessions/day? Also, how is your sleep going?
Yes it absolutely does feel great to know I'm getting closer to finish line. I think once the half way mark is done, the other half is easier to get past, mentally at least.
Good question re the pain meds. In My experience the pain meds don't help with the pins and needles sensation I had in the past with my right leg, and that sensation was also accompanied with the burning sensation. I found that none of those symptoms improved. Besides dr R tries to get his patients off pain meds asap and I've tried to get off them in similar fashion. I also think he had me lengthen the left 3 times because I was lengthening the right only twice. I'm of the opinion that he lowered my left leg so that the discrepancy between them doesn't get too large. But again this is my assumption because I didn't actually ask why I didn't lengthen 4 times on the left leg. During my last follow up, my left leg was doing fine but I'm sure that now after I tell him my left leg is numb and burns, it's unlikely that he will have me do 4 sessions unless my callus is forming extremely fast. My hope is that at least he increases my right leg sessions if the callus is forming better.
As to sleep, actually my sleep is worse now than it was the first couple of weeks after surgery. I've tried laying off Tylenol pm and sleeping naturally but I find that I keep tossing from side to side and the discomfort doesn't allow me to sleep. It's as if my body is too awake to sleep without it. Even when I fall asleep, I turn at night and that wakes me up and then I can no longer sleep. I hate relying on any type of pills in general, especially to fall asleep. I know that Tylenol pm isn't addictive but I'm still concerned that taking it won't lead to anything good. At the same time I know this is a difficult time and I need to get past the lengthening phase, and so I'm conflicted. So to answer your question, I can only sleep well when I take it. Without it I'm half awake all night. I hope this improves soon because I hate taking pills!
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Hey everyone,
Latest update after my follow up with Dr R:
I'm 10 weeks post op, left leg is at around 54mm, the right is at 50mm as of today. The X-rays don't show much change in my right leg in terms of callus formation, so things are moving slow. Dr R hasn't raised any alarms yet even though I am personally concerned. If you recall, before my follow up I was lengthening the left leg 3 times a day and the right was alternating between 2 and 3 lengthening sessions. During my visit I expressed to him that my left leg is now experiencing almost the same symptoms as my right leg in the past, albeit not as intense. The symptoms in my right leg have calmed down and that remains true still. However as Ive described before, the left shin had burning and numbness, accompanied by occasional sharp needle pain if standing on that leg for too long. As a result of these symptoms, he decided to drop the left leg lengthening sessions to alternating between 2 and 3 times, just like we did with the right leg when I experienced those symptoms. I am sure this will greatly alleviate the current discomfort with my left shin. Dr R was going to leave the right leg at the same pace (alternating), however because of my concern for the slow callus formation, I thought it would be a better idea to drop the right leg by a session, meaning I will be lengthening only 2 times a day without alternating. He agreed to allow me to do this since the callus formation is slow. I believe this is the best route for me at this time because rushing to lengthen while leaving a big gap of unhealed space in my legs is certainly not what I want. First and foremost I prioritize callus formation and I hope that lowering to twice a day will give it more time to fill in. By my calculations, I will be done with my right leg at the end of September which puts me at 4 months of right leg lengthening. That is far from ideal but like I said, safety first. I really don't understand why the callus is forming so slow. I'm starting to think that maybe Tylenol pm may play a part. I didn't bring this up to him but will do so on my next visit. Just to be safe, I've cut my use of Tylenol pm and I am now training myself to sleep without it.
In other news, I've displayed my bravery for walking unassisted to dr R lol. He was very surprised that I was walking unassisted pretty much full time but he cautioned me against doing this again because of the right leg having little callus. While my weight is within the nail's specifications for full weight baring, he still advised that I continue walking with some type of device to not put full weight on the nails. This just takes me back to my previous point, meaning it makes no sense to lengthen quickly when your bone isn't forming fast enough because you will continue walking with an assisted device (for safety reasons) even if you are capable to walk on your own. Safety is priority.
So I think that's about it for updates. What remains now is slow lengthening until I hit those 8cms. I will be seeing him again in 3 weeks and will update again regarding the callus formation at that time. Feel free to send questions and be well.
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Thanks for the update Tiggy! In the grand scheme of things 4 months / September isn't that long relative to being taller for the rest of your life, rooting for you man!
In terms of slow callus forming, were there any indications as to the cause other than the possibility of it being Tylenol PM? I know you mentioned you were 30, but could it be lack of movement or not enough movement? Genetics/ ethnicity? Low Vitamin D levels?
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Thanks for the update Tiggy! In the grand scheme of things 4 months / September isn't that long relative to being taller for the rest of your life, rooting for you man!
In terms of slow callus forming, were there any indications as to the cause other than the possibility of it being Tylenol PM? I know you mentioned you were 30, but could it be lack of movement or not enough movement? Genetics/ ethnicity? Low Vitamin D levels?
Hey Alchemist,
Thanks for the support. Actually no there were no indications. We went over the medications and vitamins I was taking (I mentioned everything but Tylenol pm since I forgot) including the doses of vitamin D and all seemed in order according to him. Im taking over 5000 ious of vitamin d per day. I think that's the norm. I'm Caucasian for what it's worth and in terms of walking, I walk a lot and stretch regularly. As I've said before, I was walking unassisted and putting full weight on the legs to hopefully promote growth but to no avail it seems. Perhaps I just simply need to give it time since my bones are healing slowly. Let's hope that the further downgrade in lengthening sessions helps on that front. In fact I asked dr R whether continuing to lengthen will increase the likelihood of bones not fusing and he said no. He said the condition of the healing hasn't worsened since my last visit, and so he took that as a good sign and I think that is why he said it's fine to proceed. Only time will tell though
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Hey Tiggy,
Sorry to hear about your callus issue. I hope it will get better with time.
Can I ask if you smoked before surgery? If so, for how long, how often, how long before surgery did you stop etc?
Keep a positive mindset, listen to your body and doctor's advice and all should be well. I'm glad you're taking the lengthening slowly as safety is extremely important as you've highlighted.
Routing for you my man!
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Hey Tiggy,
Sorry to hear about your callus issue. I hope it will get better with time.
Can I ask if you smoked before surgery? If so, for how long, how often, how long before surgery did you stop etc?
Keep a positive mindset, listen to your body and doctor's advice and all should be well. I'm glad you're taking the lengthening slowly as safety is extremely important as you've highlighted.
Routing for you my man!
Hey BYB,
No I have never smoked in my life. There are also no other prior illnesses/conditions that I have had which could adversely impact bone growth. It is all just luck, you could never predict how your body is going to respond to this or any other surgery even if you do everything right. I think I just need more time than others in my age group to get past the callus formation stage. Thanks for your post.
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Hi Tiggy can you post your latest x-rays?
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Hi Tiggy can you post your latest x-rays?
Hey, I haven't taken a photo of the X-rays but will try to do so during my next visit.
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Hey BYB,
No I have never smoked in my life. There are also no other prior illnesses/conditions that I have had which could adversely impact bone growth. It is all just luck, you could never predict how your body is going to respond to this or any other surgery even if you do everything right. I think I just need more time than others in my age group to get past the callus formation stage. Thanks for your post.
That's fair - thanks for your response. I hope everything gets better very soon!
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That's fair - thanks for your response. I hope everything gets better very soon!
Thanks, I'm hoping for more of the same. The important thing is to stay positive because depressing over something we can't change won't make things easier, though I know this is easier said than done, but I'm trying!
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Is Dr. Rozbruch somewhat disconnected with patients tiggy? I get that impression from reading another girl's diary here who had issues.
He is obviously one of the best in the business but he somewhat seems aloof about CLL: no clear price estimate, emails full of punctuation mistakes, no designated PT after surgery, does not distract nail after surgery to test if it works, etc.
I am sure you will be fine tiggy! Keep your spirits up!
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Is Dr. Rozbruch somewhat disconnected with patients tiggy? I get that impression from reading another girl's diary here who had issues.
He is obviously one of the best in the business but he somewhat seems aloof about CLL: no clear price estimate, emails full of punctuation mistakes, no designated PT after surgery, does not distract nail after surgery to test if it works, etc.
I am sure you will be fine tiggy! Keep your spirits up!
Hey Cena, interesting question. I would say he is aloof in a sense that he seems to approach the surgery lightly. When he is in the room with you he doesn't rush or anything, but I feel as though he doesn't ask enough questions and let's you tell him if there are things that bother you. Another reason why I feel as though he is aloof, for example during my last visit he told me (as he usually does) that I have 2 options, I can continue or stop. He made it sound as if 2 inches is a big enough gain and I should be happy with it. Don't get me wrong, 2 inches is a big deal and I am happy with it but given that I've spent over $100k to have surgery with him, I'd like him to appreciate that fact and encourage his patients to go forward if it is safe for them to do so. I explicitly asked him whether it is safe for me to proceed, to which he replied yes. So I was a little confused as to why he would even bring up stopping when he knows my goal is to go to the end unless I am unable to do so for whatever reason. Mind you, my flexibility is at 130-135 degrees knee bend, which is quite great. As his patient i would like him to appreciate not only the monetary cost but also the pain and suffering we go through for this surgery just to gain 3 inches. So I personally felt as though he takes all these factors lightly. Perhaps to him $100k is pocket change but for most other people it's a significant sum, including myself.
Yes punctuation is also quite horrible and he keeps his emails very brief. I understand that in the interests of time he may be rushed to get emails out especially since very few people who email him actually end up scheduling a procedure. However given that you spend like what $400 or $600 (I forgot) to see him, it would be nice to write more than a few words in his replies.
There are other reasons why I'm not completely happy with him, including that after surgery I actually didn't see him until 2 days post op. However I do feel confident in his expertise and I do like that he doesn't have a salesman type of mentality when it comes to this surgery. But there must be a balance I think.
In terms of him checking the nail during surgery, I never asked him whether he does so but I do believe that IFS in his diary stated that he does distract the nail after surgery to make sure it works. I just assumed that this was the case and never actually asked him myself. So I can't comment one way or another to the validity of that statement.
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Thanks for the reply.
Dr. Paley presented a video about CLL and in that he mentions that he tests the nails after surgery and goes on to say that Dr. Rozbruch doesn't test them and that he (Paley) gets all the bad nails. Don't know if it was a joke.
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Thanks for the reply.
Dr. Paley presented a video about CLL and in that he mentions that he tests the nails after surgery and goes on to say that Dr. Rozbruch doesn't test them and that he (Paley) gets all the bad nails. Don't know if it was a joke.
Interesting, I will make a note to ask him about this next time, let's hope I remember. I think it's smart to distract a patient right after surgery, not only to test the nail but also to get them some extra height right there and then. Another point of interest is how likely is it that a nail may malfunction during the actual lengthening, say for someone like me who's past the 5cm mark. I can't remember if I've read about this on this forum but I'll try to remember to ask this as well.
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How's it going Tiggy? Been a while since your last update, hope everything is going well!
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How's it going Tiggy? Been a while since your last update, hope everything is going well!
Hi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
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Hi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
Im ... sorry to hear.. your nonunion complications...
Are you taking calcium supplements and protein shakes?
You need to move them legs ... that will encourage bone growth ..
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Hi Tiggy,
It sounds like you are battling through these challenges and that is exactly what you need to be doing. You're only 15 days away, technically, from 7.5cm on both legs; so when you're able to resume net positive distraction ; you'll be completed in no time. With that in mind; the fact that Dr. R DID NOT flat out implore you to stop is a good sign that he believes that this goal can be reached still. I will say this, sometimes doctors will float out ideas such as "I recommend adjusting goals"; in order to validate the potential that you may be feeling like stopping and wants to give you that confirmation that its okay. Also, Dr. R, may just be throwing out the option since he knows that you have reached that 2.5 mark which is still pretty darn good and he knows that stopping will ease the recovery a bit at this point.
I can remember when I reached about 1.7 inches of growth, that I reported the numbing sensations in my left leg to Dr. M. Dr. M actually told me, that all should be okay; but if I did not feel up to the tasking that the numbness and tingling will bring, that he recommended I stop. He was very direct with me.
All should be just fine. Is there no callous in the lengthened gap or just little callous? I have a feeling that your next appointment will provide greater clarity to the situation. Also, you mentioned that you had not walked much since your last appointment. When was your last appointment and are you still standing on your feet and just not walking? Or no standing as well.
Thank you for sharing with the community. If you have any questions or I can help in anyway, let me know.
All the Best,
IFS
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Im ... sorry to hear.. your nonunion complications...
Are you taking calcium supplements and protein shakes?
You need to move them legs ... that will encourage bone growth ..
Hi Panda,
Yes I am taking calcium supplements in the form of Citracal, which includes calcium and vitamin d. I haven't been taking protein shakes since I've been consuming lots of protein but why the hell not, I'll start with the shakes as well. Can't hurt.
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Hi Panda,
Yes I am taking calcium supplements in the form of Citracal, which includes calcium and vitamin d. I haven't been taking protein shakes since I've been consuming lots of protein but why the hell not, I'll start with the shakes as well. Can't hurt.
Listen.... you will reach your goal ... you must try to walk with some assistance..
Also plain yogurt... has natural calcium.... I wish you the best...
But please my friend be positive mentally... you will get there ..,
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Hi Tiggy,
It sounds like you are battling through these challenges and that is exactly what you need to be doing. You're only 15 days away, technically, from 7.5cm on both legs; so when you're able to resume net positive distraction ; you'll be completed in no time. With that in mind; the fact that Dr. R DID NOT flat out implore you to stop is a good sign that he believes that this goal can be reached still. I will say this, sometimes doctors will float out ideas such as "I recommend adjusting goals"; in order to validate the potential that you may be feeling like stopping and wants to give you that confirmation that its okay. Also, Dr. R, may just be throwing out the option since he knows that you have reached that 2.5 mark which is still pretty darn good and he knows that stopping will ease the recovery a bit at this point.
I can remember when I reached about 1.7 inches of growth, that I reported the numbing sensations in my left leg to Dr. M. Dr. M actually told me, that all should be okay; but if I did not feel up to the tasking that the numbness and tingling will bring, that he recommended I stop. He was very direct with me.
All should be just fine. Is there no callous in the lengthened gap or just little callous? I have a feeling that your next appointment will provide greater clarity to the situation. Also, you mentioned that you had not walked much since your last appointment. When was your last appointment and are you still standing on your feet and just not walking? Or no standing as well.
Thank you for sharing with the community. If you have any questions or I can help in anyway, let me know.
All the Best,
IFS
Hey IFS,
Thanks for your message. I understand what you mean and it makes sense that drs do this however when the patient repeatedly tells you they do not want to stop, I think it's wise to not bring it up again unless you believe firmly that the patient should stop due to some sort of permanent adverse outcome. Ofocurse he believes stopping will ease the recovery, so do I. The point is that this is a balancing act and all things must be considered, such as the factors I've outlined above. This surgery is a big sacrifice, not only financial but also mental and physical. It'd be nice if the dr could appreciate that.
Actually for some reason he did not show me the X-rays when I saw him last week. I don't know why and so I don't even know how much callus there was. When I saw him the time before the last, I saw the X-ray and there was little callus on the left and hardly any visible on the right, from my recollection. Before my last appointment which was last week, I had seen him 3 weeks earlier and I truthfully spent very little time standing or walking. Mostly I was in bed. I am seeing him again in 4 weeks so until that time I will be very proactive with walking, and also protein shakes. This journey is stretching wayy longer than I thought it would. But you are right in terms of being so close. I can finish both legs in about 3 weeks (lengthening 3 times a day) once I get the green light to proceed. I'm very curious how all of this will work out. It's funny because the more you want something and the faster you want it, the longer it ends up taking for me!
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Listen.... you will reach your goal ... you must try to walk with some assistance..
Also plain yogurt... has natural calcium.... I wish you the best...
But please my friend be positive mentally... you will get there ..,
Thanks Panda! I greatly appreciate your encouragement. It can be tough staying positive but just remembering that I've come so far already gives me the extra push to carry on despite the issues I'm having. It will be fine in the end, I can feel it!
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Tiggy I really resonate with your mentality and your drive to achieve your goal of 7.5cm at least and you're right! you've spend so much money, gone through so much pain and troubles for you to cut yourself short! You're already going through a rough time! don't quit now ... get your reward from it! don't stop until you succeed brother, you'll be good man I know you will! Lets gooo
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Hi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
Tiggy I really admire your positive mindset and will to push forward. You are so close to the finish line - this last push will be all worth it. Rooting for you man!
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Hi tiggy
sorry to hear that you are having some issue in bone growth. Focus one walking and standing or other activities, which all help bone grow. Since you will not grow during this time, your muscle and tissues will recover more. You will feel better after about a month. I think you should be able to resume distraction after this. You are very close to 7.5cm. After you show Dr. R that your bones grow again, he should let you keep pushing to 7.5cm. Of course, all doctors care about the safety first. But, your goal is achievable and already very close to you. Keep pushing and stay strong!
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Thank you guys for all your advice and encouragement. You have been quite active on this thread and I'm grateful for having you here.
I will update everyone after I see him in 4 weeks. Until then my regimen will include lots of walking, vitamin supplements, milk, yogurt, and protein shakes. I must do everything in my power to stimulate growth because if I do resort to bone graft surgery after this, at least I'll know I did all I could on my part. No regrets!
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At first I didn’t want to say this because I don’t want to be a buzz kill. But I will regret it and hate myself if anything something didn’t went well with you. So at least I tell you what I thought.
I think you should consider what the doctor told you adjusting your goal. Aspeciallly he stress it over and over. Currently your bone growing slow. So the connection between the two bone were weak. If you distracting too much too fast maybe the bone don’t know where to grow.
Distracting 1cm May recover 1 month, 2cm maybe 2 month of recovery, but doing 10cm not necessary mean 10month , maybe 20 month of recovery.
If I were you I would just stop at both 6.6 coz first 6 is the lucky number in my country. I know you reallly want to reach 7.5 so bad. So I suggest going 7 cm so the case here Could it be that bad between the 0.5 cm? 0.5 wouldn’t gain you much more but you health do and starting your consolidate phase I think will boost your recovery. 7 is also a lucky number in US.
Another Suggestion is distract slower. You are going 1mm per day maybe now go for 0.5 per day. Less pain and you can slowly guide the bone growing the right direction.
So serious work out plan for you is doing PT for 30~50min in two hour.stimulate bone growth.than Ice 8 min avoid swell. My doctor said we only need to rest up to 1 hour between our PT
But the choice is always yours.
Take slight more calcium , Vietnam d, c,protein shake and magnesium
Wish you the best bro
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Hey IFS,
Thanks for your message. I understand what you mean and it makes sense that drs do this however when the patient repeatedly tells you they do not want to stop, I think it's wise to not bring it up again unless you believe firmly that the patient should stop due to some sort of permanent adverse outcome. Ofocurse he believes stopping will ease the recovery, so do I. The point is that this is a balancing act and all things must be considered, such as the factors I've outlined above. This surgery is a big sacrifice, not only financial but also mental and physical. It'd be nice if the dr could appreciate that.
Actually for some reason he did not show me the X-rays when I saw him last week. I don't know why and so I don't even know how much callus there was. When I saw him the time before the last, I saw the X-ray and there was little callus on the left and hardly any visible on the right, from my recollection. Before my last appointment which was last week, I had seen him 3 weeks earlier and I truthfully spent very little time standing or walking. Mostly I was in bed. I am seeing him again in 4 weeks so until that time I will be very proactive with walking, and also protein shakes. This journey is stretching wayy longer than I thought it would. But you are right in terms of being so close. I can finish both legs in about 3 weeks (lengthening 3 times a day) once I get the green light to proceed. I'm very curious how all of this will work out. It's funny because the more you want something and the faster you want it, the longer it ends up taking for me!
Good luck, Tiggy. I hear you, man. The slower distraction, hence giving the bone some time to catch up will surely help. If you have ANY questions whatsoever or would like some feedback from me; please DO NOT HESITATE to reach out. I'm following your story, intently.
All the Best,
IFS
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At first I didn’t want to say this because I don’t want to be a buzz kill. But I will regret it and hate myself if anything something didn’t went well with you. So at least I tell you what I thought.
I think you should consider what the doctor told you adjusting your goal. Aspeciallly he stress it over and over. Currently your bone growing slow. So the connection between the two bone were weak. If you distracting too much too fast maybe the bone don’t know where to grow.
Distracting 1cm May recover 1 month, 2cm maybe 2 month of recovery, but doing 10cm not necessary mean 10month , maybe 20 month of recovery.
If I were you I would just stop at both 6.6 coz first 6 is the lucky number in my country. I know you reallly want to reach 7.5 so bad. So I suggest going 7 cm so the case here Could it be that bad between the 0.5 cm? 0.5 wouldn’t gain you much more but you health do and starting your consolidate phase I think will boost your recovery. 7 is also a lucky number in US.
Another Suggestion is distract slower. You are going 1mm per day maybe now go for 0.5 per day. Less pain and you can slowly guide the bone growing the right direction.
So serious work out plan for you is doing PT for 30~50min in two hour.stimulate bone growth.than Ice 8 min avoid swell. My doctor said we only need to rest up to 1 hour between our PT
But the choice is always yours.
Take slight more calcium , Vietnam d, c,protein shake and magnesium
Wish you the best bro
Hi there,
Well I appreciate your honest response and I always welcome viewpoints different from my own. However you appear to have mixed certain facts about my procedure. I haven't distracted 1mm per day since about a month post op, in fact I have been distracting .5mm per day or .75mm alternating. The difference between where I am on my left leg and the final goal of 8cm is about half an inch, which is a big deal to me. However, I would never risk long term complications for half an inch gain in height. At the same time, the dr NEVER told me I'd have complications of that sort if I went all the way. His viewpoint is that it is "irresponsible" to continue at the moment given that the gap isn't filling in well. As I've said, if I resort to the bone graft surgery, does it matter if I stop at 6.5cm or 8cm? Surely it does because perhaps he would have to use slightly more bone graft during surgery to stimulate a larger gap, but he stated confidently that all his patients have recovered from whatever non union issues they have had. This leads me to what I believe is a logical conclusion, that I should be ok even if I distract to the end.
I have had another idea come to mind as of late: If growth isn't as good during my follow up, I can stop distracting for another month and give it some more time to fill in and after that I could continue with lengthening. This of course would extend the process further but also has benefits of giving my legs more time to fill in. Depending on the outcome 4 weeks from now, i intend to discuss this option with him before we jump to surgery. I haven't read about anyone doing this in their lengthening journeys but I am curious to know what he thinks. Let's hope I won't even need to bring this up to him as an option after my X-rays in 4 weeks, fingers crossed! Thank you again for sharing your thoughts
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Good luck, Tiggy. I hear you, man. The slower distraction, hence giving the bone some time to catch up will surely help. If you have ANY questions whatsoever or would like some feedback from me; please DO NOT HESITATE to reach our. I'm following your story, intently.
All the Best,
IFS
Hey IFS, I wouldn't expect anything less from you. Thanks brother.
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Hi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
I corrected 1 cm difference between femurs and its been 1 year after the surgery (precice nail2) with dr rozbruch and the xray is showing now a lot of callus formation but most of them are outside the gap (sides).
After seeing him for consultation 2 months ago he said that distraction was lost and i have to put a solid nail and do bone grafting and if i want to re gain the 1 cm so i have to cut the bone again to do acute lengthening or use stryde.
He said i have to be fully charged again and pay another 85000$ for this correction.
I escalated the issue to HSS CEO (Mr Louis Shapiro) and i asked to refund at least what i paid for this malfunctioned nail as i lost the whole distraction and now I am still following up with HSS team via email and i ll post their final decision.
I also visited Dr Betz after that and he said that he can do this correction with solid nail for 19000 euro. he said that the reason of non filling in the gap is that the nail is malfunctioned and not stable.
I have a diary for my case.
Wish u all the best.
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I corrected 1 cm difference between femurs and its been 1 year after the surgery (precice nail2) with dr rozbruch and the xray is showing now a lot of callus formation but most of them are outside the gap (sides).
After seeing him for consultation 2 months ago he said that distraction was lost and i have to put a solid nail and do bone grafting and if i want to re gain the 1 cm so i have to cut the bone again to do acute lengthening or use stryde.
He said i have to be fully charged again and pay another 85000$ for this correction.
I escalated the issue to HSS CEO (Mr Louis Shapiro) and i asked to refund at least what i paid for this malfunctioned nail as i lost the whole distraction and now I am still following up with HSS team via email and i ll post their final decision.
I also visited Dr Betz after that and he said that he can do this correction with solid nail for 19000 euro. he said that the reason of non filling in the gap is that the nail is malfunctioned and not stable.
I have a diary for my case.
Wish u all the best.
Hi Hamza,
Sorry to hear that. You spent a lot of money for 1cm. Was that 1cm imbalance causing you pain or discomfort prior to surgery?
It's interesting that the bone is filling in on the outside as opposed to between the gap but from a logical standpoint, I don't see how a malfunctioned nail could cause that. If you distracted the full 1cm without issue, how can the nail be defined as "malfunctioning" to begin with? I'm not trying to discredit what you are saying, I am simply having a tough time logically understanding the issues
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I know the nails hold 200lb and I weigh 145
Tiggy - *each* Stryde nail can bear up to 200lbs, so with two nails that's 400lbs. At 145 lbs you're well under that limit so I wouldn't worry too much about the nails being able to take your weight.
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Tiggy - *each* Stryde nail can bear up to 200lbs, so with two nails that's 400lbs. At 145 lbs you're well under that limit so I wouldn't worry too much about the nails being able to take your weight.
Well technically it's 200lb not 400 because as you walk and take one step at a time you put your full weight on 1 leg as you switch your steps. So the dr stil cautioned me that I should be careful even though I'm only 145 and the nail holds 200. This is why he told me to use some sort of support and not walk on my own until bone starts filling in.
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Ah yes, you're totally right. I forgot about that - thanks for clarifying tiggy!
Btw, may I ask why you decided to go with Rozbruch instead of, say, Mahboubian/Paley/Debiprashad? Just trying to better understand the decision making process that different people go through when evaluating doctors for CLL, as I'm likely goin to go in for this very soon myself...
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Ah yes, you're totally right. I forgot about that - thanks for clarifying tiggy!
Btw, may I ask why you decided to go with Rozbruch instead of, say, Mahboubian/Paley/Debiprashad? Just trying to better understand the decision making process that different people go through when evaluating doctors for CLL, as I'm likely goin to go in for this very soon myself...
Sure thing. He is local to me so it was mostly convenience. I couldn't imagine moving to another state to unfamiliar territory while going through this surgery. Here I'm about an hr drive away from him and my family is with me. All these things just make it much easier on you both emotionally and physically. I liked him during my consultation so I felt no need to consult with Paley. Had I not felt confident in his abilities, I would've certainly moved to see Paley. I guess I was just lucky to have a highly rated dr doing this surgery who was local to me.
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Sure thing. He is local to me so it was mostly convenience. I couldn't imagine moving to another state to unfamiliar territory while going through this surgery. Here I'm about an hr drive away from him and my family is with me. All these things just make it much easier on you both emotionally and physically. I liked him during my consultation so I felt no need to consult with Paley. Had I not felt confident in his abilities, I would've certainly moved to see Paley. I guess I was just lucky to have a highly rated dr doing this surgery who was local to me.
Ok that makes perfect sense. I'm local to Mahboubian so based on that alone I'm hoping he turns out to offer the best of everything else too so I can get it done through him - cheers!!
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Ok that makes perfect sense. I'm local to Mahboubian so based on that alone I'm hoping he turns out to offer the best of everything else too so I can get it done through him - cheers!!
Yea man, honestly if I was local to dr M, I probably would've done it with him as well. But that's something you need to feel when you see him. You'll know if he's the right choice. Good luck!
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Hi Hamza,
Sorry to hear that. You spent a lot of money for 1cm. Was that 1cm imbalance causing you pain or discomfort prior to surgery?
It's interesting that the bone is filling in on the outside as opposed to between the gap but from a logical standpoint, I don't see how a malfunctioned nail could cause that. If you distracted the full 1cm without issue, how can the nail be defined as "malfunctioning" to begin with? I'm not trying to discredit what you are saying, I am simply having a tough time logically understanding the issues
I posted everything in my diary including the xrays.
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I posted everything in my diary including the xrays.
According to Rozbruch, none of the stryde nails that he has used so far has ever malfunctioned. This is what he told me last time I saw him. But I hope you resolve these issues as soon as possible. It's hard enough going through this surgery, so I wish you patience ahead. Please keep us posted on any new developments.
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Tiggy, bone graft is not that simple, and it does not always work.
Why don't you slow down the rate of distraction? Maybe to something like 25mm per day. Stryde is weightbearing anyway. I think 6.5cm a good gain.
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Hey tiggy, we seem to have similar problems regarding bone growth. Good luck!
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Hi Tiggy so basically how old are you?
do you think age is a factor for non union of bone?
or maybe not eating enough calcium, vit d and so....
Also whats your over view on rozbruch do you regret not going to one of these los angeles or las vegas Drs??
regarding your walking, how many hours you walk per day?
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Tiggy, bone graft is not that simple, and it does not always work.
Why don't you slow down the rate of distraction? Maybe to something like 25mm per day. Stryde is weightbearing anyway. I think 6.5cm a good gain.
Hey,
Well so far I have done no lengthening at all for over 2 weeks due to the accordion mechanism I've described earlier. Until mid next week I am also not going to lengthen. When I see him next week we will decide how much to lengthen. Truthfully I will not be happy with anything less than 7.5 (which is 3 inches) and I'm so close to that at the moment (the left leg is) that I see no point to stop now. At least I'll know mentally that I've gained a firm 3 inches from this.
Anyway I don't want to jump too much ahead. I'll update once I see him next week after the latest X-rays. Doing .25 a day is always an option though and surely we will discuss that as well.
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Hey tiggy, we seem to have similar problems regarding bone growth. Good luck!
Hey man, don't fret. It will work out in the end. Just a matter of time! Keep strong 💪
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I tiggy.
When you start the bone distraction phase during the first few weeks your doctor needs to be aware if the bone fusion is fast or slow.
In case it is slow why not use this as an advantage to reduce the number of bone distractions for example to 0.33 mm per day?
Of course the procedure will be 3 times longer to be exact but your soft tissues will suffer 3 times less damage and your recovery will be faster and the trauma will be much less.
Finally it seems to me but I may be wrong.
LL 1 mm a day and about 30 times faster than the natural lengthening of the human body in growth phase. And therefore very demanding for the body and especially for the soft tissues.
If you had the opportunity would you have chosen this method of distraction for 6 months with low risk and low level of pain or would you have chosen one mm per day to reduce the process to 2 months knowing that there is a risk of pain and trauma?
Thank you for your reply.
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Hi Tiggy so basically how old are you?
do you think age is a factor for non union of bone?
or maybe not eating enough calcium, vit d and so....
Also whats your over view on rozbruch do you regret not going to one of these los angeles or las vegas Drs??
regarding your walking, how many hours you walk per day?
Hi Kenda,
I know I mentioned my age before. To reiterate, I'm in my early 30s. I think everything is a factor in bone growth but I've done very little walking in the time between my last x ray and the one before that. Since then I've been walking significantly more, at least 10 min every hr or so. I hope that leads to at least some improvement. I've also mentioned this before but I will repeat that I do not nor have I ever had any bad habits. I barely even drink. Sometimes just happens and you really can never predict how it will all turn out even if you do everything right. It's just how the body reacts, nothing you can do about it (besides the normal things you must do in your recovery regimen).
I do not regret going to dr R but only because he is local to me. If I had to travel to see him from far and incur additional costs to an already very expensive procedure (especially with him), while being away from my family, I truthfully may have regretted my choice. It's a balancing decision and each factor must be weighed based on how important it is to you. I think going to a reasonably priced surgeon who is reliable would be the best choice for this surgery. Good luck with whatever you decide
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I tiggy.
When you start the bone distraction phase during the first few weeks your doctor needs to be aware if the bone fusion is fast or slow.
In case it is slow why not use this as an advantage to reduce the number of bone distractions for example to 0.33 mm per day?
Of course the procedure will be 3 times longer to be exact but your soft tissues will suffer 3 times less damage and your recovery will be faster and the trauma will be much less.
Finally it seems to me but I may be wrong.
LL 1 mm a day and about 30 times faster than the natural lengthening of the human body in growth phase. And therefore very demanding for the body and especially for the soft tissues.
If you had the opportunity would you have chosen this method of distraction for 6 months with low risk and low level of pain or would you have chosen one mm per day to reduce the process to 2 months knowing that there is a risk of pain and trauma?
Thank you for your reply.
Hey,
Well we did drop the sessions to .75 per day after my growth appeared slow. I believe this was about a month in. To answer your question, no I would not prefer that method. Nor would I prefer 1mm a day. I think that's simply too much. But doing .33 a day is also too little. I believe somewhere in the middle is best, which is what we did (almost). The only thing is, I just wish I did what I am doing now about a month earlier. This would've given the tissues less gap to fill, which would have made filling that gap easier. This process is trial and error. I think the best route is anywhere between .5-.75 distraction a day assuming decent bone growth. Of course if the bone is filling in faster, you have no choice but to speed up the process and just deal with the pain and discomfort. If the growth is slow, as is the case with me, then it's really a matter of figuring out what works best given how much bone is filling in. None of this can be predicted ahead of time, and for that reason, speaking about what I prefer is really a fruitless exercise. I know what you meant to ask by your question, but your question assumes a perfect world with normal bone growth and the patient having the latitude to decide - something that is not as frequent as you may think.
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Hey guys,
This question is for the vets. I've been experiencing knee pain in my left leg (the leg that's longer) and it started about 2 weeks ago. I notice it began after my last follow up appointment. The only thing that's changed since that appointment is that I started taking strontium for bone growth as recommended by my dr. I don't know if that's what's causing the issue but the pain is always there when I'm walking. I don't feel anything when at rest. Of course another possibility could be the length I've reached, which could explain that the pain is in the left knee only and not the right (which is the shorter leg). I was brainstorming that what if it hurts because I've lengthened too much. But I'm only at 6.5 cm which for femurs is more than normal. I'm 3.5 months post op. Any feedback would be greatly appreciated guys.
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Thank you tiggy.
I'm sorry for the pain you feel during this process I hope everything will be ok at the end.
Unfortunately I don't have the answer to your question but I have another for you did you ever consider using an electro stimulator, a professional one like compex to relax muscles and reduce the pain during the process ?
Or maybe it is not recommended because you have an electromagnetic device in your bones what do you think ?
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Thank you tiggy.
I'm sorry for the pain you feel during this process I hope everything will be ok at the end.
Unfortunately I don't have the answer to your question but I have another for you did you ever consider using an electro stimulator, a professional one like compex to relax muscles and reduce the pain during the process ?
Or maybe it is not recommended because you have an electromagnetic device in your bones what do you think ?
No I haven't considered it, nor do I believe in any of that stuff. To me those machines seem like a gimmick to extract money from the gullible who are in pain. This is just my opinion. Perhaps they may work for some but in honesty this process, in terms of pain, was not at all bad. My issues were numbness, pins and needles and burning. Those are just nerve related issues and I doubt the machine would've made any difference with them
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You must be really flexible then.
From what I read and I understood a lot of patients felt their muscles really stretched during the process and described that as a constant pain.
Just 1.5 cm to gain to reach your aim.
Be strong and please don't forget to keep us posted about your recovery after the lengthening.
Be strong.
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You must be really flexible then.
From what I read and I understood a lot of patients felt their muscles really stretched during the process and described that as a constant pain.
Just 1.5 cm to gain to reach your aim.
Be strong and please don't forget to keep us posted about your recovery after the lengthening.
Be strong.
Thanks man, I'm doing my best and will continue my updates. Stay tuned!
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Can you pitch into http://www.limblengtheningforum.com/index.php?topic=64338.msg165617#msg165617?
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Hey everyone,
I'm happy to report good news. As of my post op this week I have had great improvement on my left leg (longer leg). Callus is filling in nicely and evenly. The right leg also had improved, though not as significantly and the callus is filling in unevenly. It appears the inner gap is filling better than the outer. Dr Rs advice was to equalize the legs, meaning lengthen more on the right to bring it even with the left, which is currently at 65mm and stop. I told him I have no intention to stop until I reach 7.5cm. That is a firm 3inches and I'd be happy with that result. This way I would cut my goal of 8cm and truthfully the difference between 7.5cm and 8cm is practically nonexistent since you really can't even tell the difference. It wouldn't make sense for me to push to 8cm and put stress on my legs.
Anyway I am due to see him in few weeks once I reach 7cm on both legs at which point we will reassess the situation.
I don't know what improved the callus situation since as you recall from my last update, I've made many changes to my regimen. It could be a combination of everything but I'm glad that there has been improvement which allows me to proceed. I wish the right leg was filling in better but no such luck. I just want to finish with the lengthening as quickly as possible and just let the legs start fully recovering. It appears that the right leg just needs longer time to recover and before resorting to any bone graft surgeries I want to give it at least a few months of recovery and see how things progress.
Another theory I have is that given my leg length discrepancy, it makes sense that I've been putting more weight on my left leg (as the longer leg) and perhaps that helped to speed up the callus formation in that leg. Surprisingly, it appears that dr R doesn't really believe that walking more would make a difference in terms of callus formation. The reason I say that is because when I saw him I did express optimism that I could try and walk more to improve the callus formation on the right, to which he replied that I'm already doing everything I can. Honestly that logic makes no sense to me. While yes I have read about patients who do practically no walking at all (as precise patients) and have their bones filling in very quickly, I believe there is another class of patients like myself who may need to help the process by putting on weight to stimulate growth. I think this is only logical, though as I've said, he appears to dismiss this reasoning.
Either way, my plan is to reach 7.5cm and wait out a few months to see the progress on the right leg. At which point I'll decide whether to go for bone graft or just give the leg more time. I do not want to jump to additional surgeries unless I see that the bone is not filling in with time at all.
So that's about it for the update. I'll touch base again after my next visit. Be well!
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Great news tiggy.... your on your way to reach that milestone...
Stay positive ... 8)
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Great news tiggy.... your on your way to reach that milestone...
Stay positive ... 8)
Thanks Panda 💪
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Great news tiggy ! !
It appears like Dr R is quite conservative with walking while lengthening even with stryde nail. Or did you yourself hesitate to walk much? From other stryde diaries like Dr M and Dr Paley it appears to me like some of those patients walked a lot while lengthening.
And yes it is well known that weight bearing helps regenerate bone. Strange he didn't agree. Why didn't you probe with more questions ? :D
Are your meetings with him rushed? From watching a video of Dr R about 'stature lengthening' about a boy called 'Sam' it had appeared to me that he does a super detailed meeting each time.
And are you going to be back to college soon? I read that you are a student on summer break.
Sorry for so many questions :D
I hope you achieve your goal !
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Great news tiggy ! !
It appears like Dr R is quite conservative with walking while lengthening even with stryde nail. Or did you yourself hesitate to walk much? From other stryde diaries like Dr M and Dr Paley it appears to me like some of those patients walked a lot while lengthening.
And yes it is well known that weight bearing helps regenerate bone. Strange he didn't agree. Why didn't you probe with more questions ? :D
Are your meetings with him rushed? From watching a video of Dr R about 'stature lengthening' about a boy called 'Sam' it had appeared to me that he does a super detailed meeting each time.
And are you going to be back to college soon? I read that you are a student on summer break.
Sorry for so many questions :D
I hope you achieve your goal !
Hi Cena,
He is conservative when it comes to walking, even with stryde. I think because it's still a new nail, he likes to exercise caution and not invite patients to do too much too quickly. I never hesitated to walk, in fact I've been able to walk without assistance for quite some time. He told me not to do so and use at least one crutch so as not to bend a nail. I follow his advice even though he was able to insert a larger nail into my femurs.
Re bone regeneration and weight bearing, I didn't probe him much because I didn't care to. At this point I do what I think is right while also taking what he says into account. I firmly believe walking helps growth and I do so whether he also believes this or not.
My meetings with him are not rushed. In fact he tends to take his sweet time with patients and this results in extremely long wait times to see him. I waited almost 3 hrs to see him last time. I find this absolutely ridiculous and frankly it pisses me off every time I'm there. Thankfully I don't have pain that makes it difficult to sit and wait (as opposed to laying down) so the visit is tolerable. But in those early days when discomfort was there, it was extremely annoying having to wait for long periods of time. It's been almost 4 months of follow up visits and the earliest I was ever seen is after almost 2 hrs of waiting.
I'm already back to school (grad school) and again killing hrs at his office really takes the valuable time I have away from my school work. In addition, now that I started lengthening, I expect discomfort to kick back in, especially on my right leg. I actually drive to class so you can imagine it becomes quite difficult because pain kicks in while driving (since you use the right leg when driving). I have another month of lengthening to reach 7.5cm so I expect some major discomfort on this front. I actually drive over an hr to get to class so this is going to be challenging to say the least. But it is what it is. Oh and I'm also sporting a crutch in school lol. It's annoying limping around people but my eyes are on the price so I couldn't care less what others think!
If I missed a question, please feel free to point this out.
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Hi tiggy,
Thanks for answering my questions.
It is amazing that you drive a car to school. It is also great that it's close to your family's home. I am still trying to imagine how you are able to hop into a car, drive, hop out, walk to classes sit on a chair for an entire lecture, all while being on crutches! It seems impossible to do without putting full weight on one leg?
I am thinking I will be in a similar situation as you because I cannot afford to quit my job for multiple reasons. I am not sure if I will be able to manage to go to work after 1 month. Some diaries paint this easy picture of walking crutch free after LL which is actually quite scary to imagine (walking on 2 broken bones).
Dr R seems to be good after all. He at least seems to care and be on the safer side.
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tiggy one more question - Did you have to pay 125k after surgery? That is how most surgeries in US happen. You get surgery and then they send you a receipt. Or did you have to pay it all before (like Paley asks)? How much time do you get to pay the whole amount?
Thanks buddy!
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Hi tiggy,
Thanks for answering my questions.
It is amazing that you drive a car to school. It is also great that it's close to your family's home. I am still trying to imagine how you are able to hop into a car, drive, hop out, walk to classes sit on a chair for an entire lecture, all while being on crutches! It seems impossible to do without putting full weight on one leg?
I am thinking I will be in a similar situation as you because I cannot afford to quit my job for multiple reasons. I am not sure if I will be able to manage to go to work after 1 month. Some diaries paint this easy picture of walking crutch free after LL which is actually quite scary to imagine (walking on 2 broken bones).
Dr R seems to be good after all. He at least seems to care and be on the safer side.
[/quote
Dr R is definitely a safe option, too safe at times lol. Getting in and out of the car is quite simple actually. You first sit sideways on the seat and when you are comfortable enough, you lift your legs and place them in. Same process is used to get out of the car.
Yea sitting in lectures that are 2-3 hrs long is going to be a challenge once the discomfort kicks in. But I will try to lift my legs up on a chair if I have too much discomfort. But I will keep you guys posted on how well I do with this. Dr R even flirted with the idea of me deferring a semester until I finish lengthening and then resuming next semester but I told him that's not an option. I just want to get this over with and not postpone my life any longer because of the surgery. It's definitely tough and will get tougher for the next 4 weeks but that's temporary, I just need to pull through a little longer! It's totally doable.
As to going to work a month post op, I think that is absolutely insane. While you will feel much more comfortable with the process at that point, it is still extremely difficult to walk for long periods and your legs get tired extremely quickly, within minutes (at least for me). I would stay home at least couple of months if I were you, though again putting hard timelines is not very realistic now because you will only know how you feel once you are going through this yourself. But 6 weeks I'd say is the bare minimum to take off.
Walking crutch free is not recommended, at least this is what dr R urges me not to do (mostly because my bone growth isn't all that great right now). It's ok for you to put full weight on a leg from time to time because you won't be able to avoid doing so completely. But that's different from ditching the crutches altogether and putting that type of pressure on the legs all day. Again this all would depend on how well you are taking the lengthening and how quickly your bones are healing, none of which you can predict in advance.
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tiggy one more question - Did you have to pay 125k after surgery? That is how most surgeries in US happen. You get surgery and then they send you a receipt. Or did you have to pay it all before (like Paley asks)? How much time do you get to pay the whole amount?
Thanks buddy!
Correct me if I'm wrong but your question suggests that you are not American. If you are not, you will be expected to pay the full cost upfront. I did not pay the entire amount upfront because I was awaiting insurance approvals/denials. However, I did pay dr Rs costs upfront. Hope that helps
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Thanks tiggy. You are right, not yet a citizen, but I doubt that changes anything because I'm insured through my employer.
I am a quite disappointed that going to work (desk job) will not be easy after a month. I am looking forward to reading how it works out with your school. Remember to take it easy! This is a once in a lifetime thing.
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Hi Tiggy, hope you are well.
I sent you a DM; please let me know if you have received it.
Thank you in advance.
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Thanks tiggy. You are right, not yet a citizen, but I doubt that changes anything because I'm insured through my employer.
I am a quite disappointed that going to work (desk job) will not be easy after a month. I am looking forward to reading how it works out with your school. Remember to take it easy! This is a once in a lifetime thing.
You are correct, it doesn't change anything. If your insurance does not cover the cost, dr R will want his fees paid upfront and the hospital will also. However because my insurance denied coverage right before the actual procedure, the hospital was more flexible with me. So it's all very individual.
You shouldn't be disappointed whatsoever. This is a demanding surgery and requires dedication and hard work in terms of constantly stretching and lengthening. If you went back to work within a month, it would be difficult for you not only to attain your goals but also to properly stretch your legs to accommodate the height. You really can't cut corners with this thing. You will only truly know what I mean when you get this done. Yes indeed, this is a once in a lifetime thing, so you gotta do it right. I wish you luck!
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Hey Tiggy,
Been lurking on your diary for a while. I'm usually not the type to post a response in a forum post, but I feel that I should since I'm also going through the same thing that you went through. I had my surgery back in June 2019. I had 0-1 level pain all the way through. My bottle of Oxy is still full. My case is pretty unique. I was able to walk unassisted a week after thanks to the Stryde nail and never really used my crutches around the house. I resumed working from home after 1 month. Everything went exceptionally well until my recent check-up with Dr. R. I'm currently at 56 mm distraction and the bone formation on my left leg is really lagging behind. Dr. R has me doing the accordion method and prescribed Strontium. Pretty much everything he prescribed you. This happened on Tuesday 9/10.
I have a question regarding you diet before the improvements. Were you eating enough? I noticed that I really haven't been eating. I think that could be causing the slow consolidation. I was 160 lbs. before the surgery and now I'm at 144 lbs. and seems to still be dropping. You also mentioned that R didn't want you to walk unassisted and that was interesting, because he told me I can walk as much as I can tolerate. If you have any tips on what you think you did during the 1 month of shortening and lengthening to help with bone growth, can you share with us?
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Hey Tiggy,
Been lurking on your diary for a while. I'm usually not the type to post a response in a forum post, but I feel that I should since I'm also going through the same thing that you went through. I had my surgery back in June 2019. I had 0-1 level pain all the way through. My bottle of Oxy is still full. My case is pretty unique. I was able to walk unassisted a week after thanks to the Stryde nail and never really used my crutches around the house. I resumed working from home after 1 month. Everything went exceptionally well until my recent check-up with Dr. R. I'm currently at 56 mm distraction and the bone formation on my left leg is really lagging behind. Dr. R has me doing the accordion method and prescribed Strontium. Pretty much everything he prescribed you. This happened on Tuesday 9/10.
I have a question regarding you diet before the improvements. Were you eating enough? I noticed that I really haven't been eating. I think that could be causing the slow consolidation. I was 160 lbs. before the surgery and now I'm at 144 lbs. and seems to still be dropping. You also mentioned that R didn't want you to walk unassisted and that was interesting, because he told me I can walk as much as I can tolerate. If you have any tips on what you think you did during the 1 month of shortening and lengthening to help with bone growth, can you share with us?
Hey man,
I'm glad you've been following my diary. Your case seems to be very similar to mine. Well I made a whole bunch of changes, some of which I've already mentioned earlier. Just to reiterate, I had stopped ALL medication (even including finasteride for hair loss). I've just been taking, and still continue to take, vitamin d, c, strontium, and citracal. I also made sure to walk at least 10 minutes every hour (with a walker mostly) and consumed yoghurt and protein shakes. I can't say my improvement was spectacular but it was an improvement nonetheless. I am sure your bone growth is at a much better place than mine, hence why he told you that you can walk unassisted as tolerated. I assume this is the case because you had surgery a month after I did and you are almost at a similar distracted length to me. This tells me your growth has been doing fine up until now. I don't think you have much to worry about. Just walk as much as you can and I'm sure you ll be fine. Sometimes some of us take longer to fill the gap than others. This is why I try not to stress much about his advice to stop lengthening. Since my last follow up I haven't been walking as much as before, mainly because I am extremely busy with classes and studying. So it's tough for me to find time to break every hour to walk. So of course during my next follow up I expect growth to have slowed again (especially because I am lengthening now also). Just give it time and don't fret. May I ask how old you are? What's your goal?
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Hey Tiggy,
Thanks for the reassurance. I'm 35 and my goal is to get at least three inches. Like you, I was pretty upset when R told me that I might need to rethink my goal. I've been trying to increase my food intake and will probably pick up a ton of yogurt tomorrow. I'm also on finasteride, did you find studies that suggest it may slow bone formation?
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Hey Tiggy,
Thanks for the reassurance. I'm 35 and my goal is to get at least three inches. Like you, I was pretty upset when R told me that I might need to rethink my goal. I've been trying to increase my food intake and will probably pick up a ton of yogurt tomorrow. I'm also on finasteride, did you find studies that suggest it may slow bone formation?
Hey,
No I haven't found any such studies. He also searched on his phone to see finasteride side effects and also found none relating to bone growth but I told him I'll stop for now just to be safe. It's not as if stopping for a month or so is going to make all my hair fall off lol.
The way I see my situation (and perhaps yours as well) and this is what I've stated to him also during my last follow up, is this: if I stop now and cut my goal short and assuming all heals well within months, I will regret not seeing my goal through. If I reach my goal now and give it time to heal, hopefully things may take let's say a month longer to fully heal but that is a sacrifice I am willing to take.
If after say 4 or 5 months post consolidation things don't heal very well, at that point I can have bone graft. It's not ideal of course but at least I'll know i gave this all I could and still reached my goal. If, in the unlikely case, my bone graft surgery isn't successful I can always shorten the gap (though this would require an additional surgery to accomplish). Either way it's not as if we don't have options here. In the end everything will work out. Plus even he said that none of his patients have ever had permanent nonunion that couldn't be fixed.
My larger point is, what guarantee do I have that if I stop at 7cm instead of 7.5 or 8 that my bone will heal completely. What if I still end up dealing with the same issues at 7cm that I would've dealt with had I gone all the way? None of course, this is unknowable. In the end I just want to play the hand I've been dealt and hope for the best. Plus I think the 1 cm difference isn't really going to make it or break it. Dr R is just extremely cautious, which is good but this is a matter of cost and benefit analysis. You may not share my sentiment but this is my outlook on the situation.
I am actually very curious if you had any luck with insurance coverage. Can you pm me (if you don't wish to discuss it publicly)?
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How are you holding up tiggy? Did university start?
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How are you holding up tiggy? Did university start?
Hi Cena,
Yes life is back in motion at full force and it doesn't ask whether you have 2 limbs broken lol. Anyway a quick update, I have reached 7.5cm as of a day or so ago. I was due for a follow up with dr R this week but I have decided to postpone my visit. Given that I have been lengthening all of last month I don't see the point in having X-rays taken at this time because they are unlikely to show much bone growth (if at all) since I was lengthening. I think it's best to see him in about 4 or 5 weeks to get a better idea of where things stand. Keep in mind that I pay him now during every visit.
In addition, I haven't been walking much lately. I felt no tightness at all when resuming lengthening but I do have pain and discomfort when I stand for too long and then sit down. It hasn't been all that pleasant to walk to say the least. However I hope that the legs start regaining strength within the next few weeks so that I am able to walk better and longer and with much less pain and discomfort. I think it's very important to stay active so I will most certainly pick up the pace of walking in the next few weeks.
I think that's about it re updates. I don't visit this forum very often now not only because of lack of time but also because once you put this surgery behind you it sort of defeats the need to visit. However I will continue my updates and will try to check my diary every week or two to make sure I answer questions. I actually wanted to take a photo of my X-rays during my visit and post it this week but given that I've postponed my appointment, I will do so after my next visit. Feel free to send questions my way, if any. Be well.
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Good to know tiggy! So are you able to sit in class for hours?
And yes please show the xrays. It's strange how different stryde patients have different experiences. Movie climbs stairs unaided. Lalbadshah continued to go to work during lengthening. One other guy I forget also went to work as he walked while lengthening.
But it's always better to be safe! You do this only once (or twice)
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Good to know tiggy! So are you able to sit in class for hours?
And yes please show the xrays. It's strange how different stryde patients have different experiences. Movie climbs stairs unaided. Lalbadshah continued to go to work during lengthening. One other guy I forget also went to work as he walked while lengthening.
But it's always better to be safe! You do this only once (or twice)
Yes sitting in class isn't as bad as I thought it would be. After taking a month break from lengthening and then resuming, the body adjusts quite well to more lengthening. However toward the end the right leg was painful for about a few hrs post lengthening. When I say painful I mean like a 1-2 level pain. This would be annoying while driving and in class I would just lift my right leg on a chair next to me and the pain would ease up. I would just do that continuously until the discomfort was gone completely. So it wasn't a big deal and now that I'm done lengthening things should continue getting better daily. I don't have class until next wed so things should be much better by then.
In terms of climbing stairs, I am 5 months post op and I can't imagine doing so without holding on to the rails for my dear life. Yes I did take longer to lengthen than usual but I don't imagine finishing lengthening a month or so earlier would've made much of a difference in that regard. Also my bone regeneration is slow so that always plays a part. I imagine if my body was quick to heal the bone perhaps I could go up and down without any assistance. There are people who have bone regenerating very quickly and so for them this would be less of an issue.
Either way you wouldn't know in which group you belong and for this reason, while reading other people's progress may appear useful, at the end of the day it is really pointless. It doesn't matter how well or bad others do, its your ultimate progress that matters. And your progress to a large extent depends on factors out of your control. I understand the temptation to gather everyone's stats and timeframes of doing certain activities, I've done this myself. But my advice is to steer clear of that. Not only is it harmful in a sense that you may build up useless timeframes in your head, but it is also harmful because if you later find yourself lagging behind, it may start messing with your head and getting you frustrated and depressed.
My advice to you and others who haven't done this surgery is to use this site and gather info on pain management. That is the most important aspect because you will find very useful info for you down the line. And the 2nd way to utilize the site is to learn about daily activity management and what you can buy ahead of time to make the process easier on you, so things like a laptop stand for the bed or a stick you can use to pick things up with, etc. Everything else in my opinion should be disregarded (assuming you are well informed about the dr you end up choosing). I realize you didn't really ask for my advice lol but I still think wise minds would benefit. Take care.
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Hi Cena,
Yes life is back in motion at full force and it doesn't ask whether you have 2 limbs broken lol. Anyway a quick update, I have reached 7.5cm as of a day or so ago. I was due for a follow up with dr R this week but I have decided to postpone my visit. Given that I have been lengthening all of last month I don't see the point in having X-rays taken at this time because they are unlikely to show much bone growth (if at all) since I was lengthening. I think it's best to see him in about 4 or 5 weeks to get a better idea of where things stand. Keep in mind that I pay him now during every visit.
If you just finished lengthening i really advice you to get that last xray to make sure both limbs lengthened the same and are even. Waiting 4-5 weeks only to find out you didnt lengthen the same would be bad. Stryde may be one of the best things right now but even the best things can mess up.
Just my opinion
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Thanks for the advice tigyg. Much appreciated!
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If you just finished lengthening i really advice you to get that last xray to make sure both limbs lengthened the same and are even. Waiting 4-5 weeks only to find out you didnt lengthen the same would be bad. Stryde may be one of the best things right now but even the best things can mess up.
Just my opinion
Good point. I've considered this. Even if there is a length discrepancy (and some discrepancy is fine I don't care if one leg is .5 mm longer or shorter because functionally this makes no difference) my right leg is healing quite slow so I can always adjust it up or down to be equal to the left leg. In 4 or 5 weeks I doubt my bones are going to consolidate quickly enough for this to be an issue and this is the reason why I'm even doing this to begin with. But thanks for sharing your thoughts! I only wish fast consolidation was the problem for me lol
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Thanks for the advice tigyg. Much appreciated!
My pleasure Cena, good luck!
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Good point. I've considered this. Even if there is a length discrepancy (and some discrepancy is fine I don't care if one leg is .5 mm longer or shorter because functionally this makes no difference) my right leg is healing quite slow so I can always adjust it up or down to be equal to the left leg. In 4 or 5 weeks I doubt my bones are going to consolidate quickly enough for this to be an issue and this is the reason why I'm even doing this to begin with. But thanks for sharing your thoughts! I only wish fast consolidation was the problem for me lol
From my experience dont leave any difference !! its ok to leave 1 or 2 mm but thats the max.
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From my experience dont leave any difference !! its ok to leave 1 or 2 mm but thats the max.
Thanks for the tip Hamza. I'll be seeing him in about 10 days so will find out what's going on soon.
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Most normal people have some discrepancy. It's not a big deal. I think Hamza had some other condition also which made the discrepancy a significant problem (?)
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Most normal people have some discrepancy. It's not a big deal. I think Hamza had some other condition also which made the discrepancy a significant problem (?)
Yes U r right. I have a very mild "charcot marie tooth" so thats why i am that much sensitive with discrepancy.
In General any discrepancy less than 3 mm is normal (I think I still have like 2-3 mm and i am fine) and no one can feel it specially if the person is not an athletic. Once u r an active person and care for run, gym squat... anything more than 3 mm could raise the flag of discomfort and start using insole for some people.
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Hey all,
I had a follow up with R this week. The X-rays are looking better even despite the fact that I've been lengthening since the last X-ray to reach 7.5cm. The left leg is doing good while the right still lags behind. R was satisfied with the progress and I asked whether It would be ok for me to go all the way to 8cm. He did say while the recovery will take slightly longer I can go ahead and finish off. So here I am, lengthening to 8cm and I will reach that goal by Friday of this coming week. I am due to see him in about 6 weeks for a follow up. Once I reach the 8cm on both legs I will do accordion maneuver for about 2 weeks only on my right leg just to stimulate some growth.
If you recall I had concerns that my legs may not be equal. By his measurements everything is fine and the reason why I feel that my right is shorter than the left is because my right leg is slightly more tight. R said 1 or 2 mm discrepancy is normal but calculating down to that precise measurement is very difficult. Either way that was good news and I expect that feeling to go away once I recover some more.
In other news, it feels very good to be 3 inches taller! I was out for my cousins bday about a week ago and I actually wore my 2 inch dress lift shoes and I was standing at 5'8. That was fantastic and I only wish it was possible to attain 5'8 with one surgery. I really would be very happy with that final height without shoes but again wearing lifts really highlights the height difference. I wore the same lifts before at 5'3 and while I was taller, I still felt significantly shorter than most people that I was surrounded by. However now it felt incredible because while not tall, I find 5'8 to be a good height for a male.
I also happened to hang out with some family friends whom I haven't seen since before surgery. The first thing they said was that I look taller lol. I said nothing about it. They did ask why I was walking funny and I said I twisted my ankle the night prior. However the talk of town seems to be that I've had surgery to gain height. I won't go into detail how I know this but the friends I've met do suspect that I've had the surgery done (even though they know nothing about the surgery itself). I just thought I can pull off the height increase but turns out NOPE. The increase may not be astounding to those who see you on almost daily basis but others who don't (and evidently are really aware of heights in general) will most likely tell you have grown taller. These friends that I speak of are both taller than me and both are 5'8. So obviously before surgery the difference between us was huge. Now I was only couple inches shy from their heights and with lifts I'd be just as tall. Long story short my plan of not disclosing anything has failed even though I directly did not disclose anything lol. I just wish I had known ahead of time that they would be so aware of the height increase that way I wouldn't lie about twisting my ankle. Now it just seems like I'm trying to mislead and hide the surgery. I do not want this to be their impression since I have no issues disclosing the surgery itself. I simply wanted to keep my business private because I owe no explanation to anyone. But anyway if they ask me about it next time I would have no choice but to tell them the truth. For those reading, you have been warned lol.
Anyway this was a long update but it was long overdue. My next one won't be until late December or early January. In the meantime I'm happy to answer questions. Cheers!
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I love reading your updates tiggy. Great work reaching 7.5cm!
As for friends noticing one way is to wear paper flat shoes and get them used to 5'6 and then slowly wear whatever you want. It would be more gradual. Anyway this doesn't really matter because you don't mind telling people you did this. But again I would advise against telling people. There is no reason for people to know. It's always safer to not tell anyone as much as possible. You can't untell people later. ;)
If you can, please show us your gait.
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I love reading your updates tiggy. Great work reaching 7.5cm!
As for friends noticing one way is to wear paper flat shoes and get them used to 5'6 and then slowly wear whatever you want. It would be more gradual. Anyway this doesn't really matter because you don't mind telling people you did this. But again I would advise against telling people. There is no reason for people to know. It's always safer to not tell anyone as much as possible. You can't untell people later. ;)
If you can, please show us your gait.
Hi Cena,
Thanks! I share your sentiment of not telling anything to anyone. I am an extremely private person so telling people anything in general isn't my forte, especially when it comes to something as private as having surgery. I should've been more clear, when I met the family friends I was actually standing at 5'6 since this was at the comfort of my own home. I was wearing very thin slippers for gods sakes! For this reason I thought the height wouldn't be too noticeable. I even tried slouching a little so as not to draw too much attention to my height. Had I been outdoors I would've blamed the height on shoes, but given I wasn't wearing any this wasn't a possibility. Anyway it is what it is.
As to a gait video, I will try to post one after I finish lengthening. As I said I restarted lengthening to reach 8cm and so I notice a worsening of my gait already. I don't want to post my current gait now because it is not representative of what it was just 5 days ago before I restarted lengthening. Once I'm done for good I should bounce back to somewhat decent gait within about a week of not lengthening. So I think posting that video would be more telling. In fact my gait prior to resuming was very similar to IFS's first post of his gait. You can check out his diary and the first video he posts of his walk, not much difference here.
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Hey Tiggy,
Congrats on a successful lengthening. I just have one question. Are your femurs noticeably longer than your tibia; in other words, is the proportional difference from before the surgery obvious to people?
Thanks,
TTS
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Hi Tiggy
Excellent!! I was out of forum for a while and found you have gone really far already!! Congrats on your successful gaining! Wow even you are going to all the way 8 cm!!. Absolutely fabulous! I also have a little of regret in my mind that I didn't push it to all the way, but actually couldn't because I have family and job to take care of. I am very happy for you. Yeah, 5'6" is a really decent height and with a good lift, you will feel completely average!!
Regarding privacy, yeah, I also agree with you and cena that it is always better to keep it secret. I even decided not to see some people to avoid any disclosure about this surgery.
Again, congrats!!
Take care!
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Hey Tiggy,
Congrats on a successful lengthening. I just have one question. Are your femurs noticeably longer than your tibia; in other words, is the proportional difference from before the surgery obvious to people?
Thanks,
TTS
Hi there,
Thanks. Well I've added 3 inches to my femurs so yes they are longer than the tibias, but how noticeable it is to other people I can't tell you since I am not one of them. When you are around other people you are usually dressed fully lol so i doubt anyone would even notice anything out of the ordinary unless they are a member of this site lol. When you are nked before another person then she or he may ask a question about it, but even this I find unlikely because there are so many people with all kinds of proportions out in the world that raising issues with your proportions would hardly be at the forefront of their mind. I haven't been nked in front of another person yet so I can't tell you whether I got any feedback about this. Either way how my proportions are perceived to another person is seriously the last thing in this world that I care about lol. Sorry I couldn't be of more help
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Hi Tiggy
Excellent!! I was out of forum for a while and found you have gone really far already!! Congrats on your successful gaining! Wow even you are going to all the way 8 cm!!. Absolutely fabulous! I also have a little of regret in my mind that I didn't push it to all the way, but actually couldn't because I have family and job to take care of. I am very happy for you. Yeah, 5'6" is a really decent height and with a good lift, you will feel completely average!!
Regarding privacy, yeah, I also agree with you and cena that it is always better to keep it secret. I even decided not to see some people to avoid any disclosure about this surgery.
Again, congrats!!
Hey Ghostfish,
Thanks man I really appreciate you popping by and sending good wishes my way. I am also greatful for your support throughout this journey and I hope you know that it meant a lot. How far did you go with lengthening and what's your height now? Try not to regret anything. You did what you did for a reason and you had a very good reason at that. We tend to forget these feelings as time goes on. But I can't blame you because I also knew that if I stop early (R was telling me to call it quits at 6.5cm) I will regret it for years to come. I'm the type of person that if I feel I made a mistake in anything I tend to beat myself up over these mistakes. For this reason I try to avoid putting myself in that position given the plethora of other things in life that I have yet to regret lol
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Hi tiggy
Thanks for your kind words! I could have pushed 1-2 cm more but didn't have more time at that moment. My wife was burned out by herself LOL. I am also sort of a perfectionist so I generally push hard to reach high, although the real outcomes may be not that high lol. Anyway, I did what I could do at that moment. Now I am accepting it pretty much. You will reach the max so there will be no regret for you! That is really awesome! Hope your recovery goes well!
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Hi tiggy
Thanks for your kind words! I could have pushed 1-2 cm more but didn't have more time at that moment. My wife was burned out by herself LOL. I am also sort of a perfectionist so I generally push hard to reach high, although the real outcomes may be not that high lol. Anyway, I did what I could do at that moment. Now I am accepting it pretty much. You will reach the max so there will be no regret for you! That is really awesome! Hope your recovery goes well!
Thanks Ghostfish. I honestly expected to be in a far better position than I find myself in currently but I also didn't expect to lengthen for 4-5 months so I guess it's fair. I hope once I'm officially done in few days things can move more quickly. Its crazy when I look back and realize just how long this process took for me. But oh well, it's a nice lesson on timelines for others to be aware of.
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yooo tiggy I was wondering about length discrepancy too I feel like my right leg is shorter and it kind of reflects on my gait, but I will check tomorrow with Mahboubian and see if they're even but then again it could be that one leg is tighter but that's true and even I know it. Also as far as the people noticing that you got taller I'm in the same boat!! haha a lot of people I would see say I got taller and get a little suspicious maybe not of me getting surgery to increase height, because I did disclose to a lot of people that I was going to get surgery for hernias that I have in my growin area, which kind of worked in my favor as well because It's also a pretty believable excuse as to my funny gait to everybody. I won't disclose the CLL procedure ever to anyone except the people I have already haha, hope you reach the 8cm without major issues if at all
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Hey movie,
It's likely that the feeling of unequal legs is caused by tightness. I actually need to work on stretching my right leg to loosen it up but given the workload in school at the moment it's hard to find time. But classes are done in 4 weeks so during my winter break I will spend a good deal of time stretching my legs. Frankly I haven't stretched them for the past 2 months and I'm even surprised myself that I am able to continue lengthening. However R did tell me I had above average flexibility pre op so that's probably the reason why I'm getting away with not stretching. But anyway you should consider spending more time on the right leg to loosen it up. Eventually the gait should take care of itself. Definitely send me a post here after your visit with dr M
As to disclosing ll, it's very difficult keeping silent without somehow offending others. I was discussing this with my mom and made it clear that I expect for her to keep quiet about it to others who ask. I have no doubt that she will but in her words "people aren't stupid and they can tell a grown man out of puberty doesn't just get taller out of nowhere" lol. While this is certainly true I hate having to give others explanations. I personally wouldn't probe someone who didn't want to discuss such personal aspects of their lives. At the same time, if people see you got taller they will be curious how that happened even if they don't think you got surgery done. Based on that I expect they would ask what actually happened and this is when I'm at a loss for what to say so as not to offend their intelligence and tell lies that are clearly untrue from their perspective. I just need to sit on it and think of how to approach this I guess. It sucks that after going through ll, some of us also have to come up with ways to keep something very private actually private
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hey tiggy,
i'm ny-based and considering dr. r. hoping to keep it to around $100k, have you exceeded that since you began your treatment w/ him? thanks for any insight you have into that, as cost is the primary limiting factor atm
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hey tiggy,
i'm ny-based and considering dr. r. hoping to keep it to around $100k, have you exceeded that since you began your treatment w/ him? thanks for any insight you have into that, as cost is the primary limiting factor atm
Hey,
If your insurance covers nothing at all, expect to pay between 110-120k.
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A fellow member of this forum sent me some questions, some of which I wasn't asked before. I was given the permission to post the questions here so that other members can benefit as well.
The questions:
Hi tiggy congratulations on gaining your desired height. I was wondering how your experience was with dr rozbruch, Also in your psych evaluation what do you think makes a person the right candidate for the surgery and get approved by your psych advisor. Also i wanted to know if there is any way you could describe the pain and discomfort during the course of your lengthening period. I am also considering dr rozbruch as my number 1 option for this surgery
My reply:
Overall my experience was good. If you are local to him and cost isn't an issue then I would certainly recommend him. He knows what he is doing, has expertise and follows a concervatice approach to lengthening (while this is not a bad trait to have given the horrible outcomes some have had with other negligent surgeons, my frustrations with this can be found in my diary). If either of the above are not checked off then I would suggest going with someone cheaper and just as safe. Even Paley is cheaper so that's something to think about. The cost of living in NY is very high unless you are willing to fly back and forth after the first month or so post op.
The psych evaluation, LOL- I'll be honest and say that in my opinion the psych evaluation is total bull . I think it's just a way for R to direct patients to his buddies so that they can earn extra cash on the vulnerability of his patients. The entire evaluation felt absolutely asinine to me. You are asked questions about why you want the surgery and then she asks you to look at images and then talk about what you are seeing. Then you are asked to draw images that you associate with some words she tells you. At the end of the "evaluation" she told me I'll receive her "assessment" of our meeting within a week, even though she did tell me I was good to go (yes this wasn't a newsflash to me). I have yet to receive her assessment lol. I just think if you are going to charge someone so much cash for 1 hr (I can't recall her fee exactly but I think it may have been like $500), the least you can do after putting the patient through all those exercises is at least some assessment of what your performance may have meant based on some psychological standard. But surely enough there was no reply from her after that meeting. Oh and even if you have insurance, she doesn't accept any insurance from dr R patients (do you think this surprised me? Lol). All of these lead me to believe this is just a ploy to drain us of cash. So unless you are a total mental case, you will "pass" with flying colors. Don't worry about that. Just have the cash.
If you read my diary, my pain level since the beginning hovered around 1 to 3 max. It only started getting worse after numbness and nerve pain started to kick in along with the burning sensation. This made it difficult to sleep at night because my shins felt like they were on fire. This was about a 5 level pain and about an 8 level discomfort. Keep in mind I have high pain tolerance also.
The overall pain with this surgery is difficult to describe. You got pins under your skin so for the first month or so it will be tough to sleep on your side. The pain is the regular type and nothing unique to this surgery. Think of getting hit by a bat (lightly lol) on the upper side part of your femur while you are under anesthesia and then waking up, suddenly feeling the pain and then having to try and sleep on that side at night. Obviously it's going to be painful and uncomfortable. In hindsight it's difficult to describe sensations of pain once the feelings pass because we tend to block those out as we recover. It's difficult for me to recall the pain now, except for the nerve pain and burning sensations perhaps because those are what really left their mark on my memory because of the higher pain. I don't even remember if I described the pain in my diary in detail as I was going through it but feel free to read it from the beginning.
At least for me ll was about 70-80% easier than I expected. Keep in mind I really prepared for the worst. I literally woke up from surgery and the first thing I did was to look down just to make sure I still had my legs. In fact up until I closed my eyes on the operating table I couldn't believe I was about to get my legs broken. I had an internal struggle with myself the entire time because I knew how bad things can be just from reading other people's diaries. Luckily all of worst case scenarios were avoided (except for the nerve pain, for which I wasn't mentally prepared because I just thought "this probably wouldn't happen to me so I'm good to go" and also because that sensation is very new for most people and you just don't know how it could feel) and if not for that, I would say this surgery for me was at worst a 3 on the pain scale. I also happened to have the nerve pain earlier and it seems more intense than so many other people who got femurs done. I guess it can't be all too easy! Hope this helps.
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Hey all,
So it's been 2 months since my last update and about 8 months since surgery. I had a follow up with dr R today. I was told bone growth is coming in well. We estimate that in a few months (close to 1yr mark from initial surgery) things should be close to consolidated fully. I think this estimate is too optimistic on his part and I estimate a full consolidation closer to June or July. However I will be seeing him again in 4 months at which point I will update the forum accordingly.
My walk is improving slowly. I haven't been diligent with stretching and I still wobble toward my right side when walking. Dr R told me this will improve slowly as I heal more and said I should be doing PT exercises for Hip flexors and quads to help improve my walking.
I still hang on to rails when I go up and down larger steps. The goal now is to find 10-15 min a day to do stretches to get myself back to normal. This shouldn't be a big issue most of the week when I am not in class but at home. Other than this there is not much new to report. The recovery from this surgery is a slow process and involves lots of patience and diligence to do PT in order to get back to normal faster.
I can tell you that these 8cms are truly life changing and have had such a big impact on my confidence level. As I've mentioned elsewhere in my diary, I have had a few friends notice and comment on my height increase. Since then I've spent the new yr with family and close family friends but No one had commented about the height. However I could tell when looking at them that most of them knew something was different but they couldn't quite figure out what had changed.
I intend to update this diary after every follow up with dr R (absent any other new and significant developments) but given that these will be much more rare going forward, so will the updates. I thank you all for reading, encouraging and advising me along the way. This forum is truly a treasure if used correctly and I'm glad to have had the wisdom of veterans who had advised and educated me in this journey. As always please feel free to send questions/comments my way, if there are any. Be well and happy new year to everyone!
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Congrats Tiggy! I remember reading your diary before I had my operation - your journey was an inspiring one - thanks for sharing it with us. So happy to see you enjoying this new height. I hear you about patience, at times progress can feel so slow but then I stop and think about how far we've come and it amazes me. Consistency and discipline with stretching and strengthening and a whole lot of patience is the name of the game for us these days, cheers!
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Congrats Tiggy! I remember reading your diary before I had my operation - your journey was an inspiring one - thanks for sharing it with us. So happy to see you enjoying this new height. I hear you about patience, at times progress can feel so slow but then I stop and think about how far we've come and it amazes me. Consistency and discipline with stretching and strengthening and a whole lot of patience is the name of the game for us these days, cheers!
Thanks brother, I'm glad you found this diary useful. Congratulations to you as well for your achievement. You are standing at 6ft, the dream of probably all men in the world! Most importantly you are at peace with yourself and that in itself is priceless. Cheers man
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Tiggy! This is great news. You're on the final stretch run and you achieved your goal. Coming weeks will be the time you need to fully heal and regain your natural walking gait. Congratulations! Your courage paid off big time.
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Tiggy! This is great news. You're on the final stretch run and you achieved your goal. Coming weeks will be the time you need to fully heal and regain your natural walking gait. Congratulations! Your courage paid off big time.
Thank you IFS, you have been such a great mentor to me. It's funny that I have never met you or theAlchemist but this forum and all your comments and support along the way almost make me feel like we've been life long friends. I think this is because this surgery is so unique and there aren't too many of us out there that when we find each other it becomes somewhat of a private club lol. But anyway I appreciate all your support. Now I just need to find time to put into recovery. I have been pondering hitting the gym soon so perhaps that will be my next major step since surgery. Have you considered getting tibias done or are you totally content with your gains?
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Tiggy congrats bro! happy to hear from you again and I hear you about our "little CLL forum club brotherhood" I've never seen any of you guys' faces or in real life but I swear I have genuine love for you guys haha and always rooting for you guys to get better and recover back to normal or as close to pre LL as possible. I think gym would be very beneficial to ya, or at least squats at home, I know they're doing great for me I can feel my strength coming back with the squats and stretches at 5 months and a week post op. hope you and your loves ones are good bro, cheers.
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Tiggy congrats bro! happy to hear from you again and I hear you about our "little CLL forum club brotherhood" I've never seen any of you guys' faces or in real life but I swear I have genuine love for you guys haha and always rooting for you guys to get better and recover back to normal or as close to pre LL as possible. I think gym would be very beneficial to ya, or at least squats at home, I know they're doing great for me I can feel my strength coming back with the squats and stretches at 5 months and a week post op. hope you and your loves ones are good bro, cheers.
Hey Movie, thanks for your comments and all your support as well. You described my feelings exactly! Squats are a good idea and I'll start doing those too.
In all seriousness, if any of you guys are NY locals and would like to grab a drink sometime don't hesitate to pm me and we can arrange something right away. If you aren't local, then please know that you have a friend in NY and if ever you are here I will be glad to meet and if necessary extend a hand. Be well guys
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Thank you IFS, you have been such a great mentor to me. It's funny that I have never met you or theAlchemist but this forum and all your comments and support along the way almost make me feel like we've been life long friends. I think this is because this surgery is so unique and there aren't too many of us out there that when we find each other it becomes somewhat of a private club lol. But anyway I appreciate all your support. Now I just need to find time to put into recovery. I have been pondering hitting the gym soon so perhaps that will be my next major step since surgery. Have you considered getting tibias done or are you totally content with your gains?
Hi Tiggy!
I feel the same as you. Now as far as going one more round with tibs....well as much as I'd love those last extra 2 inches; I am content.
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My fellow LLers,
Its been about 2 months since my last update so I figured to drop a new post for anyone interested in my progress so far.
I am happy to report that going back to the gym on a full time basis (5-6 days a week) has really done wonders for me. I am now able to go up and down the stairs without holding on to the rails. Most of the time I still hold on just for balance's sake but its feeling more and more normal as days progress. I was also on vacation recently and I was able to swim without any issues. The only thing I have not done yet is jogging/running and jumping. Dr. R hasn't cleared me for these activities yet but I will be seeing him again in couple of months and I will update the forum again at that time.
My gait has also improved tremendously and I am not tilting to the side as much, if at all. I think the tilting begins when the legs get tired after walking for some time. I am also rebuilding my stamina and each day I am able to walk longer distances before I break a sweat!
Getting through LL recovery is very trying and demands dedication and lots of patience. However, the benefits outweigh all of that, at least for me. So for those going through LL now and reading, keep your head up and fight on!
Thats all for now, I will post again in couple of months and update you guys on the latest X-rays. Be well. Cheers!
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Love reading updates like these! Awesome outcome man!
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Love reading updates like these! Awesome outcome man!
Thanks for reading bro. Hope you are doing good as well!
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Congrats tiggy! glad to hear some significant improvements, it can only get better from here ;)
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Congrats tiggy! glad to hear some significant improvements, it can only get better from here ;)
Thanks Movie,
Very true my man! My shins are still numb so I am hoping that recovery process picks up faster because that is the last major point of concern for me at the moment. I know numbness is improving but the process is extremely slow. Did you have numbness in your shins, and if so, has it improved significantly?
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Thanks Movie,
Very true my man! My shins are still numb so I am hoping that recovery process picks up faster because that is the last major point of concern for me at the moment. I know numbness is improving but the process is extremely slow. Did you have numbness in your shins, and if so, has it improved significantly?
Hey Tiggy, wanted to chime in on my side, I still have numbness in my left shin. I'm a week away from approaching 6 months post op. It's probably the one thing that reminds me about LL throughout the day. Really hoping it resolves itself soon although on the bright side it seems like it gets progressively better each week. The frustrating thing is there's nothing I can actively do to accelerate the resolution.
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Hey Tiggy, wanted to chime in on my side, I still have numbness in my left shin. I'm a week away from approaching 6 months post op. It's probably the one thing that reminds me about LL throughout the day. Really hoping it resolves itself soon although on the bright side it seems like it gets progressively better each week. The frustrating thing is there's nothing I can actively do to accelerate the resolution.
That's curious. Why do you guys have numbness in the shin if you did femurs? Is that common in Stryde patients or just some cases?
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That's curious. Why do you guys have numbness in the shin if you did femurs? Is that common in Stryde patients or just some cases?
Nerves running up and down our entire legs are stretched as the femur is lengthened causing nerve irritability in the form of occasional sharp 'electric shock' type pains and numbness. While at Paley's I would say nearly half of the CLL femur patients experienced some form of nerve pain or numbness, typically around the shin area.
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Thanks Movie,
Very true my man! My shins are still numb so I am hoping that recovery process picks up faster because that is the last major point of concern for me at the moment. I know numbness is improving but the process is extremely slow. Did you have numbness in your shins, and if so, has it improved significantly?
Wow I'm surprised you and Alchemist still suffer from the shin numbness and pains. I myself stopped suffering from those about a week in consolidation I'd say it was 90% gone, and after a month I had even forgot about that, It wasn't until 2 weeks ago I played a bit of soccer and hurt my hip as I was kicked the ball, that the shin pains came back but very slight nothing compared to how they were during distraction... continue stretching as much as possible, muscle stretches faster than soft tissue, but eventually It'll catch up and hopefully disappear the numbness and pains.
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Wow I'm surprised you and Alchemist still suffer from the shin numbness and pains. I myself stopped suffering from those about a week in consolidation I'd say it was 90% gone, and after a month I had even forgot about that, It wasn't until 2 weeks ago I played a bit of soccer and hurt my hip as I was kicked the ball, that the shin pains came back but very slight nothing compared to how they were during distraction... continue stretching as much as possible, muscle stretches faster than soft tissue, but eventually It'll catch up and hopefully disappear the numbness and pains.
That's probably it, I've been slackin on the stretching and PT lately. I gotta get back on my grind!
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Thanks for chiming in guys. Well I don't have pains in the shins at all. Its only the numbness that's really annoying.
Movie, im glad you have none of the numbness anymore. I really attribute your awesome recovery to your age. You are very lucky to have been able to get this over with at your age. Not only is the recovery much easier but you get to enjoy it for much longer than us dudes in our 30s. Enjoy it brother!
Alchemist, your recovery is also impressive. You only have numbness in one leg and you are only about 6 months post op. In couple of months I'll be hitting 1yr! Honestly I don't even expect all the numbness to go away until another yr for me.
I haven't told you guys yet but I'm seriously considering tibias sometime end of this yr or beginning of next. And I know that with tibias usually people get numbness behind the shins (my numbness now is at the front portion of my tibias). So added numbness from tibias would literally turn all of my tibs numb. Should I go forward with the tibs, I'm just hoping this numbness improves significantly until then!
I've tried searching the forum for recent tibia diaries but I can't seem to find any internal tibia diaries (except for MyEvolutions diary). If you guys come across some, please send them my way!
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Thanks for chiming in guys. Well I don't have pains in the shins at all. Its only the numbness that's really annoying.
Movie, im glad you have none of the numbness anymore. I really attribute your awesome recovery to your age. You are very lucky to have been able to get this over with at your age. Not only is the recovery much easier but you get to enjoy it for much longer than us dudes in our 30s. Enjoy it brother!
Alchemist, your recovery is also impressive. You only have numbness in one leg and you are only about 6 months post op. In couple of months I'll be hitting 1yr! Honestly I don't even expect all the numbness to go away until another yr for me.
I haven't told you guys yet but I'm seriously considering tibias sometime end of this yr or beginning of next. And I know that with tibias usually people get numbness behind the shins (my numbness now is at the front portion of my tibias). So added numbness from tibias would literally turn all of my tibs numb. Should I go forward with the tibs, I'm just hoping this numbness improves significantly until then!
I've tried searching the forum for recent tibia diaries but I can't seem to find any internal tibia diaries (except for MyEvolutions diary). If you guys come across some, please send them my way!
Hey man.....wanted to ask you about your current athletic status? Can you run, walk like pre op?....
Are you fitting in the normal world like nothing ever happened....except that numbness....
I hope the numbness goes away soon!
Best wishes!!!!
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I've tried searching the forum for recent tibia diaries but I can't seem to find any internal tibia diaries (except for MyEvolutions diary). If you guys come across some, please send them my way!
That's exciting news man. Best of luck on the tibias journey! Here are a few stryde tibia diaries:
Superusercj: Did stryde femurs initially and came back for stryde tibias. Met him at Paleys, cool dude, successful outcome with both femurs and tibias.
http://www.limblengtheningforum.com/index.php?topic=9286.0
Shortlivesmatter:
http://www.limblengtheningforum.com/index.php?topic=9956.0
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That's exciting news man. Best of luck on the tibias journey! Here are a few stryde tibia diaries:
Superusercj: Did stryde femurs initially and came back for stryde tibias. Met him at Paleys, cool dude, successful outcome with both femurs and tibias.
http://www.limblengtheningforum.com/index.php?topic=9286.0
Shortlivesmatter:
http://www.limblengtheningforum.com/index.php?topic=9956.0
Awesome thanks. Will check these diaries out. And thanks for the best wishes bro, means a lot. Once there are new developments on tibia front, I will definitely keep you all posted. Until then be safe and well!
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Awesome thanks. Will check these diaries out. And thanks for the best wishes bro, means a lot. Once there are new developments on tibia front, I will definitely keep you all posted. Until then be safe and well!
'tibia front' now thats a pun.
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tiggy, reading this diary was like watching a drama. Things start okay, get good, then crash down into hell, then slowly but surely improve, and then very satisfying ending. I was so worried before you had to do the accordion method. I'm so happy for you. Life is just starting now for you. God bless you tiggy, you're an inspiration.
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tiggy, reading this diary was like watching a drama. Things start okay, get good, then crash down into hell, then slowly but surely improve, and then very satisfying ending. I was so worried before you had to do the accordion method. I'm so happy for you. Life is just starting now for you. God bless you tiggy, you're an inspiration.
Hey man,
I appreciate the kind words and thank you for reading. I will be posting a new update in a few weeks once I see my dr for X-ray follow ups. Stay tuned and be safe!
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tiggy man your post is so helpful as I also plan to do Stryde with Dr. R in the next few years. One question though you mentioned that your insurance doesn't cover much for the procedure, I was wondering what insurance company you have?
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Tiggy are you still planning Tibias like you said or did covid ruin everything.
This is one of my favoritest diaries. Twas my First time seeing accordion method on the forum to successfully aid slow callus growth. Also one of the rare Rozbruch diaries out there
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Hi Tiggy, any update on how the bone growth went and overall quality of life?