Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Optimistic1 on February 21, 2018, 04:24:24 PM
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Hi Everyone,
I just had my bilateral internal Tib/Fib operation with Dr. M on 2.15.18 and my bilateral Femurs operation is scheduled next month. I’d like to share my experience with everyone who’s interested in pursuing their dream of becoming taller. I’ll provide more information soon.
Optimistic1
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how much are you paying
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Hi Optimistic1,
Good to see you here. Hope that it all is going well with Dr. Mahboubian.
Wishing you a strong and trouble free recovery.
Keep us all posted, firsthand information shared is invaluable. Thank you.
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“how much are you paying”
Mirinheight,
To be safe, put 200K aside.
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Do you mind sharing your starting height and your height goal?
I wish you the best of luck through all this, Optimistic1.
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“Do you mind sharing your starting height and your height goal?
I wish you the best of luck through all this, Optimistic1.”
Myloginacct,
I’ll start my journal soon and give everyone my stats. I started one on the makemetaller forum but that site seems dead so I stopped.
I’m 5’5.5. My wing span is 5’7.5. I want to lengthen 8 cm on my Tib/Fib but Dr. M said 6.5 cm is more realistic but he also said let’s see how it goes and we’ll determine this as we go.
I want to lengthen 8 cm on my femurs and Dr. M said it’s doable as femur bone generates faster than Tib/Fib bone. I want to be between between 5’10 and 5’11 at my final height. I think there might be a problem with proportion at this height and my wingspan so that’s why I’m going to watch it very closely. I’ll be buying a lot of cloths and looking at myself in the mirror more often to see if there’s any obvious signs of disproportionality and stop lengthening right away. It’s going to be a tough fight and I’ll try my very best. Thank you.
Optimistic1
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I wish you all the best. I have the same height and also want to do femur and tibia. But I made several mock-ups(with help of board-member Android) and I will not exceed 175cm or 5'9.. max 5cm per segment... Generally perceived as safe limit and proportion-wise "approved" ... although proportions are not the nr1 concern... A good friend of mine has almost the same sittingheight as I have, but he is 6'3(191cm)... all legs!... keep us posted
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Hi Honore,
Thank you for your advise. It’s better be safe than sorry. Any extra inch I can increase in my height is a gain so I’ll be happy with what I can get. First, I have to be able to stretch probably so I can keep on lengthening.
Things are improving since the surgery but I still have this constant ache pain. Whenever I put both feet onto that floor before transferring myself to a wheelchair or walker, I feel a very strong pressure in both legs and much stronger in my left leg, the weaker one. Morning is the worst. Of course, these are without pain meds. With pain meds, I’m fine. Now, I’m trying to get the PT to come to my house as it’s extremely difficult for me to leave my house.
Did you experience this pain during your lengthening? If so, how long did it take for this to go away? Do you have any tips in dealing with it? Thank you.
Optimistic1
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“how much are you paying”
Mirinheight,
To be safe, put 200K aside.
if you have that much, why not go to paley or rozbruch
mahboubian is good but those two are the best
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Did you experience this pain during your lengthening? If so, how long did it take for this to go away? Do you have any tips in dealing with it? Thank you.
Sorry, my LL is planned for 2019... hope the pain goes away
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Mirinheight,
Fortunately, I’m flexible with money so cost is not the only factor. However, I can’t afford much down time and Paley requires his patients to stay within a close proximity for the entire process. He might have changed this now but it’s the protocol when I consulted with him, no exception. With Dr. M, I had my surgery last Thursday and I’ve been home since Wednesday (six days after). The procedure went well and the reason I’m experiencing some pain is because I don’t take pain meds.
For Rozbruch, he works in a city where I know many of the professionals including the staff at the hospital. New York is big city but the professional community isn’t that big. I want to maintain a highest degree of confidentiality of these procedures until I’m mentally and physically prepared to deal with human’s curiosity.
So far, Dr. M is a good doctor.
Optimistic1
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Honore,
Good luck and I wish you the best. The pain is not so bad so don’t be discouraged. The reason I’m experiencing some pain is because I don’t take pain meds. If you take pain meds then you should be fine.
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Hi Everyone,
I can finally post my journal about my Tib/Fib surgery and the early stage of the recovery process. I had my Tib/Fib surgery on 2.15.18, saw Dr. M for my post-op on 2.20.18, got home on 2.21.18 (I live very far from Dr. M), did my first lengthening session today for .75 mm on both Tib/Fib. I'm currently scheduled for my bilateral femurs next month. A little bit about me:
33 years old, turning 34 soon
Pre CLL height: 5'5.5 or 166 cm
Wingspan: 5'7.7 or 171 cm
Sitting Height: Don't know but it's either average or just a little shorter than average.
Goal: 5'10 or 5'11
Location: USA
My dad is around 6 feet tall (this is tall as the average male height for his ethic group is 5'4 or 5'5) but my mom is only 4'9 or 4'10 and she's considered a few inches short for her female ethnic group. My brother is 5'10 and both of my sisters are 5'3. I gave up on sports because I stopped growing taller after my last year of junior high, I was 13-14 at the time. I grew really fast before that and everyone thought I'd grow up to be taller than my dad. Unfortunately, it didn't happen. ;(
I started researching these magical procedures during my first year of grad school and that was 11 years ago. I was 22 years old at the time. I'm very happy that I can finally pursue my dream of being taller. God is fair. You'll be given either a good physical appearance or brain. Rarely do you get both. Some might think they have both but that thinking is subjective. I think he gave me the brain. Lol. I can now enhance my physical appearance and still keep my brain. Lol. I don't think I'd work extra hard to be where I'm today if I were 6 feet or taller growing up. Lol.
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You guys can also look at LAgrowin's journal. I did a great job at putting it together.
2.15.18 at 5:30 am, I checked in at the Providence St. Joseph Medical Center. They took me to the first room to get prepared then to the operation room. I woke up at around 1:30 p.m. feeling a lot of pain in my left leg. They gave me 2 pain shots and the problem was resolved. I felt good that day and pain wasn't an issue because I was coming out of anesthesia. I even felt great and was excited too early. Dr. M came in that evening to tell me the operation went well on my right leg but my bone is soft on my left leg but nothing major. I don't remember the exact terminology he used. He fixed it and it will actually heal faster than the right leg. I felt so good that Dr. M was going to release me one day early.
2.16.18: This day was bad and they put me on morphine but to me pain and suffering is subjective. The nurses felt so bad for me. To me, it wasn't so much about the pain. It's about my inability to pee and had to keep going to the bathroom the entire night but can't pee. I feel bad for the nurses because I kept on pressing the button that night. I'd sit in the bathroom for as long as 60 minutes trying to pee. I had the urges to go but as soon as I sat down, it was hopeless. At some point, I felt my bladder was going to explode. Ask Dr. M if he can put you on dilaudid instead of morphine as morphine can decrease your ability to pee normally. That night, the nurse had to stick the catheter pipe right into my **** and it feels so weird when a girl is doing that while you're awake. She kindly asked if it was okay to do that and I said "at this point, nothing matters anymore, lol." The pee came out and filled up one and a half bag (that's a lot).
I was icing both legs nonstop. My nurse (favorite one) and I came up with an amazing system and Dr. M was amazed when she saw it. Lol.
2.17.18: I decided to stay for another day as I was previously scheduled for. This day was great. I didn't feel much pain and by 9:00 am I was very okay. I think because I was able to get some sleep the night before. I was able to pee and had some bowl movement. You'd find this weird what I'm about to tell you how I was able to pee but whatever you can do to make it work, do it. Lol. Like I said earlier, nothing matters at that time. So I was sitting on the toilet and place both of my hands on the toilet seat and moved my body up and down. That created the urges to pee. The other method I did was leaning forward and rest my hands and shoulders on the walker. The last method is using my middle finger and push it against the part right above my****. Do that gently and keep doing it. If one of these methods works, then just use that method. I hope I don't gross you guys out.
I was put on dilaudid and only needed 2 shots. I was on only Norco from that point on. I was released on February 17 at 2:30 pm. Before I left, I asked for a shot of dilaudid to deal with the possible trauma of transportation. I used Affinity and the van has a ram to roll my wheel chair up and into the van. It's only $55.00 for one way. It's worth it.
I arrived at the hotel around 2:50 pm and my private nurses were already there waiting for me (you don't need this service if have someone to help you. I, personally, don't like to bother anyone). I gave one nurse a grocery list to buy and the other one started to help me bathing and shaving, etc... I'm feeling fine now with very little pain. I didn't feel I needed my Norco but took it anyways.
Tips:
1. Bring anything that you normally need to the hospital because the supplies at the hospital are just the basic.
2. Ask Dr. M if you could be put on dilaudid instead of morphine but I think each person reacts differently to pain medication. For me, I was having diarrhea instead of constipation like most people do.
3. Just relax as it will get better every day. The second day (the day after the surgery) is the worst but you'll likely get much better on the third day.
I'm aiming for 8 cm but Dr. M said 6.5 cm is a more realistic goal for the tib/fib. He also said just wait and see how it goes. Complications are inevitable with these surgeries so I'm going to follow Dr. M's instructions religiously and hope for the best. I might have had a good start but there's no guarantee it's going to stay that way throughout the entire lengthening process. I am prepared for the worst, but hope for the best. I will update everyone with any changes.
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4th day: Today is my fourth (4th) day since the surgery date of 2.15.18. I feel better today than I did yesterday. I can perform most ADL by myself including icing and putting pillows underneath my feet to elevate them. No noticeable problems so far but I'll keep everyone posted.
5th day: 5th (fifth) day since the surgery (2.15.18) and I'm getting better every day. It's amazing how you can witness your body recovering and improving everyday from such a major operation. I'm down to only 1 Norco every 5- 6 hours now. Pain is more manageable. I can raise both my legs up without using my hand. My left leg is slower and weaker than my right leg. The left leg is the one with soft bone that Dr. M discussed with me after the operation. I don't experience the sharp shooting pain in my left ankle every time I move it anymore. I slept for 9 hours last night (2 hours +3 hours + 4 hours because I woke up in between to use the restroom). When I woke up at 7:00 am, I felt very good and didn't feel any pain at all. I felt I could reconnect with all of my nerves in my legs and no more drowsiness feeling from the pain meds.
I became excited too early so I went back to sleep for another 2 hours. When I work up at 9:00 am, I started feeling the pain in both legs as the last time I took one (1) Norco was over 5 hours ago.
There's nothing exciting today. I just took my meds, ate, washed myself, brushed my teeth and used the restroom. I'm doing all these things on my own the nurses are just on standby. Getting in and out of bed is much easier now that I can raise my legs up. I will try to get some ice on my own instead of using room service. I think I'm going to tell my nurses that their service is completed.
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6th day: Saw Dr. M and he said everything looks great. He took my bandages off and said I can shower. Oh boy, it feels so good to finally shower.
7th day: I flew back home and the experience was horrible. I felt like both of my legs were exploding even after taking 2 Norco. My recommendation is DO NOT fly unless you need to. I got home and my nurse came over to assist me. Nothing much.
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Hi Everyone,
I can finally post my journal about my Tib/Fib surgery and the early stage of the recovery process. I had my Tib/Fib surgery on 2.15.18, saw Dr. M for my post-op on 2.20.18, got home on 2.21.18 (I live very far from Dr. M), did my first lengthening session today for .75 mm on both Tib/Fib. I'm currently scheduled for my bilateral femurs next month. A little bit about me:
33 years old, turning 34 soon
Pre CLL height: 5'5.5 or 166 cm
Wingspan: 5'7.7 or 171 cm
Sitting Height: Don't know but it's either average or just a little shorter than average.
Goal: 5'10 or 5'11
Location: USA
My dad is around 6 feet tall (this is tall as the average male height for his ethic group is 5'4 or 5'5) but my mom is only 4'9 or 4'10 and she's considered a few inches short for her female ethnic group. My brother is 5'10 and both of my sisters are 5'3. I gave up on sports because I stopped growing taller after my last year of junior high, I was 13-14 at the time. I grew really fast before that and everyone thought I'd grow up to be taller than my dad. Unfortunately, it didn't happen. ;(
I started researching these magical procedures during my first year of grad school and that was 11 years ago. I was 22 years old at the time. I'm very happy that I can finally pursue my dream of being taller. God is fair. You'll be given either a good physical appearance or brain. Rarely do you get both. Some might think they have both but that thinking is subjective. I think he gave me the brain. Lol. I can now enhance my physical appearance and still keep my brain. Lol. I don't think I'd work extra hard to be where I'm today if I were 6 feet or taller growing up. Lol.
Thanks for sharing that. That last bit was actually somewhat inspirational to me. In the end, it's all about perspective, right? We can either let ourselves be overrun by our human condition or find the strength to overcome it.
Also, your brother is pretty inspirational too... in a way. I didn't think it was possible for someone to get so lucky with height. :D
I hope you get a smooth lengthening and a great recovery, Optimistic.
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Hi everyone,
Today is the 11th day since my bilateral tib/fib operation. Pain is manageable and I'm down to 1 norco every 6 hours. I don't really feel much pain. It's just the uncomfortable feeling in both legs that I have. I finally gave in and called my mom. She came 2 days ago with my sister and they have been cooking very good and healthy food for me. I figured if I were going to do my femurs within a month, I needed to be in an extremely healthy condition and only mom my can help me with that. The nurses can only cut the fruits and prepare some light meals, they can't cook the way my mom does. I also told my chef to take a break.
Today is also my 3rd day of lengthening my tibs/fibs. I lengthen 3 times a day and .75 mm each time. I don't feel anything during and after each lengthening. One time, I had a burning feeling on my calves but it went away shortly. I'm not going to take any x-ray until March 1st so I don't even know whether everything is going good. I want to feel excited that I started lengthening but at the same time I don't even know if everything is working. I sleep better now and my appetite is good.
I just let my employees know that I'm coming to work tomorrow. I'm just going to brief them and go home. I haven't told them what happened yet. I only told them I'm back from my trip and I can't walk and am heavily on pain meds. They asked me happened but I told them I'm okay and I'll see them tomorrow. I've always come across as an extremely tough guy to them, almost emotionless. Well, that's what the business world is like and they need a strong leader who is capable of hiding all his pains and struggles.
Let me know if you have any questions.
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Sounds like you're doing well so far, thanks for keeping us in the loop. And yes, no one can cook like mom.
I'm about your age and height, your goals are close to mine as well, just not as affluent! Best of luck on your journey.
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Glad to hear that you're well Optimistic1. I've learned to accept help from my mother and father as well, I didn't want to bother them, but they've helped tremendously. Bless them
Did I understand correctly that you're lengthening 3x a day at .75mm each time? It is that the days total ?
Things will slowly get better as tele weeks go by.
All the best!
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Hi Everyone,
12th day post surgery: It's getting better every day. Whenever I don't want to deal with the pain, I take 2 pills Norco but I'm afraid I might run out. I was prescribed and filled 80 pills but I'm down to only 16 now. I just emailed Dr. M's assistant to ask for more. I don't know if he's going to prescribe me more. If he doesn't, I'll be screwed. I think it's healing at the incision sites so it's really itchy and I can't stop scratching. I put on some cream and it helps for a couple of hours. I'll be getting my stitches out tomorrow.
I've been doing PT exercises prescribed by the intake PT person on my own. I will be officially working with my PT today at 11:00 am. I relayed to the intake PT person about my condition and asked that she send someone who truly understands what I am going to. She said she would send someone good. She said she has never heard of, let alone worked with, someone with my condition. CLL is relatively a new concept. Let's see if my PT guy knows what's he's doing. I'll test him and if he fails, I'll get someone else. This is important so I leave no room for error.
I went to work yesterday for 3 hours. It wasn't too bad and I forgot about the pain the moment I started working. I only brought 1 Norco so when I started feeling tire, I had to call my sister. All I did at work yesterday was going through my mails, endorsing checks, and signing documents. Very easy work but I was still exhausted because the pain came back. I also had a staff meeting and everyone kept telling me how skinny I'm and that I needed to go home. Employees love it when the boss is not around so I will try to go to work whether or not I can do anything.
I've lost so much weight. I haven't weighed myself but it's possible that I lost between 15-20 lbs. I'm getting better thanks to my mom's fantastic cooking. I started working out on my upper body again now. I'll consult with my PT on what I can or can't do. I feel a little more ready for my bilateral femurs procedure day after day. Hopefully, I can be both physically and mentally ready soon. I'm still lengthening 3x a day at .25 mm each time. I don't know if the machine is working properly or not. The Tib/Fib procedure involves breaking 4 bones, not just 2, so it's more complicated. I have read diaries from other LL where the fibula bone consolidate faster than the tibia bone. I'm not getting my x-ray until March 1 so I'm worried every day. I think this is typical for other LLs as well. I'll update everyone with anything new.
Android,
Thank you for the best wishes and you're correct that no one can cook like mom. You need to pursue your dream. We only have one life to live so live it. When you did you have your CLL done or have you had it yet? What doctor did you have your CLL with? While money is important, it's not the only factor when it comes to CLL. Many CLL focuses so much on the costs. Just give yourself time and save up a lot of money. For me, it was finding the right time to do it because of my work schedule and other life matters. Good luck and let me know if you have any questions.
LAGrowin,
I don't like bothering anyone but sometime when they offer and you really need, you just have to take it. This is an important procedure so I leave no room for error. Currently, I'm lengthening 3 times a day and .75 mm each time. Today is my 5th day of lengthening. I haven't noticed anything so I don't know if it's working properly. I think this is the one concern that many LLs have and hopefully there will be some way to tell whether or not the person is lengthening properly in the future even before taking the first x-ray. How's everything with you? Are you feeling any pain still? Are you back to work?
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Hi everyone,
13th day post surgery: I had my first official PT session yesterday. The guy is nice and experience but said he had never worked on CLL patients before. He said the concept is similar to other types of injury recovery and he had heard of LL for limb deformity correction, not for cosmetic reason. I told him to do some more research about CLL.
He said I improved a lot from the report the intake PT person gave him. I told him I have been exercising religiously. I do 5 exercises before each lengthening session. I was able to use my exercise bike yesterday for the first time for 10 minutes but I was very slow. I did 2 more sets on all the exercises and 20 more minutes (10 minutes each) on the bike after he left.
He said there are 2 types of patients: 1 he has to push them and 2 he has to tell them to slow down and I belong to the latter group. He said 2x a week of manual PT is sufficient and allows my tissues to heal and I can do the exercises myself at home. Therefore, we scheduled my PT sessions for 2x week.
Last night, I woke up at 2:00 am with some pain and it was manageable so I didn't take any pain meds. I woke up again at 4:00 am in a lot pain. I think it was from the strenuous amount of exercise I did the day before. It was so bad that my mom has to massage my feet until the pain meds kick in. I was able to fall asleep about 30 minutes after. I woke up this morning with some pain so I took 1 Norco before the scheduled time. I just did my 5 exercises and lengthened .25 mm. I'll ride my exercise bike for 10 minutes, take a shower, and head to work. I have an appointment with my primary care doctor today to have my stitches removed. I'll update everyone with something new later.
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Android,
Thank you for the best wishes and you're correct that no one can cook like mom. You need to pursue your dream. We only have one life to live so live it. When you did you have your CLL done or have you had it yet? What doctor did you have your CLL with? While money is important, it's not the only factor when it comes to CLL. Many CLL focuses so much on the costs. Just give yourself time and save up a lot of money. For me, it was finding the right time to do it because of my work schedule and other life matters. Good luck and let me know if you have any questions.
Definitely will turn dream into reality soon, gears are in motion. Haven't started my journey yet, but will talk more about it soon once it's set in stone. As for timing I'm quitting my job and taking a year off; not planning on moving back to the city I'm in now since I'm kinda over it anyway.
Glad that PT it going smoothly, I think it's good that you're in the latter group. Mentally easier to cut back than ramp up!
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LAGrowin,
I don't like bothering anyone but sometime when they offer and you really need, you just have to take it. This is an important procedure so I leave no room for error. Currently, I'm lengthening 3 times a day and .75 mm each time. Today is my 5th day of lengthening. I haven't noticed anything so I don't know if it's working properly. I think this is the one concern that many LLs have and hopefully there will be some way to tell whether or not the person is lengthening properly in the future even before taking the first x-ray. How's everything with you? Are you feeling any pain still? Are you back to work?
Hi Optimistic1,
Happy to read that you are slowly progressing.
I am still feeling pain, but nothing too bad, it's day by day, the days where PT is more aggressive naturally leaves me in more pain through the day and night. I am starting to get out to my office for only 3-4 hours per week and then handling certain things from home. It is challenging but my work set up has made it doable.
You're blessed to have your mother helping you. It is amazing that even in my forties with my condition my mother has stopped by to massage my feet while I fall asleep. It is times like these we realize how important family is.
Again, happy to hear that things are moving positively for you. It certainly gets better with every passing week.
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16th day post-surgery: I'm feeling better every day. I no longer experience the pain and pressure in my legs when I put them down onto the floor while transporting myself from my bed to the wheelchair. I don't experience a lot of pain waking up in the morning after a long night of sleep without any pain meds. I'm taking 1 Norco every 4 hours plus half a pill of Ibuprofen. This really helps with the pain after every PT session. I have PT every Tuesday and Thursday. My PT guy said it's better to have it 2x a week and let the legs heal first plus I exercise 3-4x a day on my own so it should be sufficient. I've been coming to work for 3-4 hours and it's not easy. I think it will get much better soon but then I will be having my femurs done around that time. I haven't done my femurs and my experience with tib/fib is not too bad.
Day 9 of lengthening and so far so good but I still don't know if everything is good as I haven't taken my x-ray. Dr. M said I should take it on March 8, 3 weeks after surgery. I don't know what my bone consolidation rate is in either the tibia bone or fibula bone. As I have previously provided, Dr. M. stated that the tibia bone takes at least 4 weeks to show any sign of consolidation. However, I have read diaries on here and the old forum where some CLL experienced early consolidation in the tibia bone. Let's hope I don't have this problem. Currently, I'm taking Vitamin D3 2000iu, Calcium 600 mg, Vitamin C 1000mg, Vitamin B12 5000mcg, and Biotin 10,000 mcg. I also resume taking my Fish Oil and Viviscal (to promote hair growth). You don't have to take all of these. I used to take all of these even before CLL.
I think because I'm still in my very early stage of lengthening to experience any sign of ballerina feet and other issues. I do experience stiffness but maybe because of the swelling and the effect of the surgery. My PT said my flexibility is very good and almost as a normal person. I will continue to stretch and eat healthy. I do experience some breakout on my face. I think it is because I'm taking a pain meds every day. Please feel free to ask me any questions you might have. I will try my very best to provide you with as much information as possible so may adequately prepare for your own journey. I'd like to thank those who posted their diaries on the forum and provided me with a huge amount of information about CLL. Of course, you should always do your own research.
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Hey Optimistic, sounds like you're doing really well. I just had my femurs done by Dr. Mahboubian on March 1st, and everything went well. I did not experience the extreme pain that some people do. I'm very happy with Dr. Mahboubian so far, good luck on your femurs.
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Hi Short2tall,
Thank you and congrats on your femurs. Have you been released from the hospital? Today is your third day so you should have been released by now. There’s another gentleman by the name LAGrowin who just got his femurs done not so long ago. He’s put together a very detailed journal. I think everyone reacts differently to these procedures. Some experience more pain while others can tolerate it pretty well.
It’s not so bad for me on the tib/fib. The biggest problem I had while I was in the hospital was that I couldn’t use the portable urinal or commode so I had to constantly walking to the restroom and spending hours in there trying to pee. If I didn’t have this problem, it wouldn’t have been so tough. I’ve been practicing peeing in the urinal for my femurs. I’m improving so far.
What’s your pain level now? How many Norco are you taking now and how often? What are the biggest problems you’re facing now? What tips do you have coming into this procedure? Are you having problems sitting on the toilet? Are you living by yourself or having help? Sorry for asking so many questions. I hope I should be 60-70% recovered by the time I do my femurs. Thank you.
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Hey, no problem, ask away. And yes, I've been following LAGrowin's diary as well. I was actually released after the first night because I was doing so well. I didn't have an issue using the urinal, but the catheter removal certainly was painful. I have yet to try to sit on the toilet but I intend to at least practice lowering myself down onto it. As far as my caretaker situation, I got really lucky. I found someone who is both a caretaker and a physical therapist. She's been great so far, and is spending about 4 hrs a day with me right now. I'm from the east coast and I'm staying in a hotel here in LA for the duration of the process. So far the only painful part of the femur surgery has been the screws holding the precise 2 in the upper part of my right femur, near my hip. I can sometimes feel a sharp pain there, especially when I first stand up with the walker. You have to be very careful when making any kind of turning motion, as Dr. M will tell you, so at least the pain reminds me to take it really easy when turning or transferring. I have been taking one Norco when I wake up, maybe one more during the day, and then one before bed. I also tend to take one if I wake up in the middle of the night to help me go back to sleep. Sleep has been pretty good. Are you worried about experiencing any additional swelling or anything in your lower legs after you get the femurs done? I've seen where some others have mentioned blood flow,etc, to the still broken tibias could be compromised when you have the femurs done afterward?
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"Are you worried about experiencing any additional swelling or anything in your lower legs after you get the femurs done? I've seen where some others have mentioned blood flow,etc, to the still broken tibias could be compromised when you have the femurs done afterward?"
short2tall,
Yes. This is one of my main concerns in additions to the double pain from the recovering tib/fib and the incoming pain from the femurs. Also, I don't know how weak my legs will be when both my tib/fib and femurs are broken.
The swelling in my legs are almost gone, except for the bruises. I stopped icing and/or sleeping with pillows elevating my legs anymore. I don't know anyone who had done tib/fib and femurs within a month period for me to consult about the possible problems. I've sent Dr. M an email about this. I hope that my swelling in my lower legs will be completely gone by the time I do my femurs. I read your journal. Thank you for sharing your experience with us. Let me know if you have any questions and do keep us posted. We want to hear how you do.
Optimistic1
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17th day post surgery: I feel more pain now than before. I think maybe because I've been overworking myself with PT and riding the exercise bike. I do 20 minutes on the exercise bike 3 times a day. I drive to and from work and other places. I also do 6 different exercises 3 times a day. By night time, I'm all exhausted and in pain. Instead of taking 2 Norco, I take 1 plus half a pill of Ibuprofen. This helps a little bit but I still experience some mild pain in the left region of my right knee.
I don't know if I'm overworking myself but I like exercising. My flexibility is much better now and I can ride my exercise bike comfortably with no pain. I read about ballerina feet and duck a** problems as the lengthening passes certain centimeters. Some LL didn't experience this and I'm trying my best to avoid this if I can. If anyone of you have any tips, please share. Thank you in advance.
I woke up with a lot of pain this morning so I took 1 Norco plus half a pill of Ibuprofen. My mom massaged my feet for about 30 minutes. I took a shower then took her out for breakfast then we went grocery shopping. Yes. I drove my mom around today. I've been driving to and from work for several days now. I only live about 15 minutes from work. When I got home, I was exhausted and in pain so I took a Norco before my scheduled time.
Everything else is good. I'm still lengthening 3x a day and .25 mm each. I haven't noticed changes. I can't wait to take my x-ray on March 8 which is this Thursday. Hopefully everything is fine. I will try to find a way to post my x-ray on here. One thing, when I was transferring from my wheelchair to my car today in the parking lot, my left hand slipped because I didn't tape down my cushion so I almost fell. I put my left leg onto the pavement and applied a lot of weight to it to prevent myself from falling. I experienced some light pain for a couple minutes in my left calf. I hope I didn't break the rod in my left tib/fib bone. I'll update everyone with new information soon.
Just a minor thing. Many of you on here are very nice and polite when asking questions. Please keep up the good work. Remember, we don't have to do this and we're not getting paid doing it. It increases my pain when I sit in front of my computer typing my journal but because I want to help I try not to think about it. I truly appreciate those before me who underwent their procedures and shared their first hand experience. They are my source of encouragement. I feel I owed them to pass on the torch. I haven't experienced first hand anything bad about Dr. M. My surgery went well and I'm recovering properly. Even if I hear something bad, which I haven't, I still have to investigate and perform my own research before reaching a conclusion.
Optimistic1
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3rd week post-op: Everything seems to be the same. I stopped biking as of today to see if the pain would go away. I can't seem to sleep at night lately due to pain.
I had my first x-ray yesterday and I thought I saw some early bone consolidation and my fibula bones are not in alignment. I emailed Dr. M some of the images and asked for his opinion. He said everything looks fine and my bone is generating at an ideal rate. The x-ray place has already mailed him the complete set of images. He'll go over everything with me at my 2nd post-op appointment which is also my pre-op appointment for my femur surgery. I will try to upload some of the images here.
My physical appearance has changed so much. I lost a lot of weight. My face is breaking out. I feel I'm losing a lot of hair now. Well, I will continue to eat healthy food and ride this wave through the end.
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Can someone show me how to upload images? It keeps saying the message inbox is full. Thank you.
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Can someone show me how to upload images? It keeps saying the message inbox is full. Thank you.
http://www.limblengtheningforum.com/index.php?topic=2183.0
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Thank you, KiloKAHN.
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Here's a couple images of my first x-ray. Just copy and paste it onto our URL.
https://imgur.com/a/qum6v
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Looks good.. looks already nice bone growth, but the fibula seems mis-aligned.. is that a problem?
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Honore,
Thank you and that was my concern as well. However, Dr. M said "Everything looks well aligned and exactly as it should be." He also said "The amount of bone you are forming is fantastic!"
He further said "We never put a rod in the fibula. Rather, the fibula is attached to the tibia and lengthens along with the tibia."
I asked him "The 2 ends of the Fibula bones are not connected to anything. How are they going to regenerate bone properly and connect with each other later on?" I'm still waiting for his response. I'll keep everyone posted.
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23rd day post-op: I stopped exercising on my stationary bike for 2 days now and my pain is improving at night and early in the morning. I also notice that the pain meds kick in faster now compared to before. I'm still lengthening 3x a day at .25 mm each time. My femur surgery is in 5 days and I'm a little bit worried because I came a across a statement posted on this forum under Dr. M's name about 2 and half years ago. The statement is as follows:
"It is not recommended to perform lengthening on the femurs and tibias simultaneously due to higher complication rates including fat embolism, joint contracture and nerve damage."
I'll be lengthening my femurs and tibias simultaneously after the femurs operation on March 15. I don't know what has been done since this statement was made to prevent or reduce the above-mentioned complications. I spoke to Dr. M before my Tibia surgery in December 2017 about the risk(s) of doing both tibia and femur simultaneously and he said don't worry because a lot of his patients have done both with no or very limited problems.
I just emailed him about the above statement last night and am still waiting for his response. I have never read any diaries from anyone who has done both on this forum. Any information or tips are greatly appreciated. According to Dr. Paley's website, "It remains safer to do the two lengthening surgeries on separate dates separated by at least two to three weeks apart." I'm doing my surgeries 4 weeks apart so I hope this will help prevent or eliminate most, if not all, of the above-mentioned possible complications.
My Tib/Fib is recovering very well. I'm still taking 1 Norco plus 1 Ibuprofen every 4-6 hours. I think I can wing it without pain meds but I don't like that uncomfortable feeling. My swelling has gone down almost completely. Just one or two remaining bruises.
My flexibility is great. I can stretch my legs all the way out and bend to touch my butt with my heels laying down. I do 7 exercises 3 times a day so my flexibility improves a lot. My PT said my flexibility is like a normal person. I can sleep on my side a little bit now. Everyone is different so I hope my experience is helpful to you in some way.
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Hey Optimistic1, its great to hear how flexible you've remained. I hope I can get back to that point soon.
I think you will be fine after the femur surgery. If both Paley and Mahboubian are willing to do quadrilateral lengthening (3 weeks apart), it has to be something that they feel is safe. I was thinking your weight bearing would be extremely limited, but I don't think it will be any different after the femur surgery. The smaller nail in the tibia will be the limiting factor.
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looks good man!
did insurance cover any of the hospital bill?
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MirinHeight,
My insurance does not cover any of the hospital bill.
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Hi Everyone,
I flew into Burbank today for my Tib/Fib second post-op and femur pre-op. I'm ready for my femur procedure. I had my second x-ray at Dr. M's office and was informed that my bone growth is not so good. He measured my distraction at 1.5 cm but I measured it at 1.35 cm. He said there's little or no bone growth in my fibula bone. Therefore, I'm reducing my lengthening to 2x a day at .25 mm each for 5 days then resume to my usual routine. I don't know how this is going to work as I will be having my femur procedure in 2 days. I'll lengthen 2x a day tomorrow then resume 3x a day on Monday. The days (Thursday, Friday, Saturday, and Sunday) that I don't lengthen due to my femur procedure I'll just consider them as I'm lengthening 2x a day.
Dr. M prescribed the same thing for my femur procedure: Norco and Xarelto. I called 6 different pharmacies and none of them has the amount for Xarelto that I need. The most I can get is 12 pills which I filled. I'll ask Dr. M to send the RX to the same pharmacy in my hometown for the rest.
Dr. M. also prescribed me Silica to aid with the bone growth in my Tib/Fib. I'll update everyone about the femur procedure soon.
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Sorry to hear about your bone growth Optimistic1 :'( Hopefully that rest period while you have your femur surgery will allow for some bone to start forming. I'm sure it will all work out. Great luck with your 2nd surgery!
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Success with the femurs... did the doc gave you possible reasons for the non-growth? And can I ask you about whether you smoked a lot in your pre-cll life or had a bad diet or something else maybe related to not forming new bone? Or is it just genetics?
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short2fall,
Thank you and I'm hoping for the same thing too. I'll keep everyone posted and provide suggestions I might have in improving my situation.
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Hi Honore,
Dr. M didn't tell me the cause of the slow or non-growth of my bone. He said it looks better in the Tibia bone than the Fibula bone. My concern was fast consolidation so even though this is a problem it's not as problematic. I have already rearranged everything at my company to allow me to be away for 8 months. So far, most of my employees are very cooperative and I just gave everyone a bonus before I left yesterday. This gives me the peace of mind to continue on with my journey. I prefer a slower lengthening rate to prevent any possible complication. I read somewhere that the ideal rate for lengthening is .66 mm a day. I could be wrong.
I don't smoke or drink. My diet is average but I've been taking a lot of supplements (7 different supplements ) every day. I used to work a lot so sometimes I'd skip lunch or have a very late lunch or just 1meal a day. It's tough growing a business at where I live, let alone growing a successful one. Breakfast is not part of my diet. However, I used to juice everyday and used to drink 2 large glasses of 6 different fruits daily.
It could be genetics and that could be the explanation as to why I wasn't able to grow as tall as my dad (6 feet) or my brother (5'10). Lol. I will everyone posted of my femur procedure.
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Hi Optimistic1,
Hope you're well overall. Wishing you all the best with your femur procedure, is that tomorrow or next week ? Please reach out if you need anything while in town.
I'm sorry to hear about your current bone growth. One of Dr. Ms other patients who happens to also be a physician recommended a supplement called bone builder which I want to look into and take when I'm about to finish lengthening. You might want to check it out.
Here is one I saw:https://www.vitaminshoppe.com/p/garden-of-life-grow-bone-system-algaecal-240-capsules/gu-1128?mr:trackingCode=152E5D84-C9E0-E511-80ED-00505694403D&mr:referralID=NA&sourceType=sc&source=SHOP&acqsource=adlucent&utm_source=Shopping&utm_medium=CSE&utm_campaign=Garden%20of%20Life&utm_content=GU-1128&gclid=EAIaIQobChMI_fLnours2QIVBp7ACh35qAPcEAQYCyABEgKLsvD_BwE (https://www.vitaminshoppe.com/p/garden-of-life-grow-bone-system-algaecal-240-capsules/gu-1128?mr:trackingCode=152E5D84-C9E0-E511-80ED-00505694403D&mr:referralID=NA&sourceType=sc&source=SHOP&acqsource=adlucent&utm_source=Shopping&utm_medium=CSE&utm_campaign=Garden%20of%20Life&utm_content=GU-1128&gclid=EAIaIQobChMI_fLnours2QIVBp7ACh35qAPcEAQYCyABEgKLsvD_BwE)
Wishing you all the best!
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Hi LAGrowin,
Thank you for the recommendation. I’ll definitely look into it. My surgery is this week. Hopefully, it won’t be too bad.
Optimistic1
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Hi LAGrowin,
Thank you for the recommendation. I’ll definitely look into it. My surgery is this week. Hopefully, it won’t be too bad.
Optimistic1
Sincerely hope that surgery went well for you Optimistic1. My thoughts with you for a smooth recovery.
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Hi Everyone,
I had my femur surgery on Thursday (3.15.18). Dr M. almost cancelled my surgery because I was not supposed to be taking Ibuprofen but I did for 3 weeks straight every day for 3 pills a day or even more. Basically, Ibuprofen causes one's blood to be thin and the body will bleed excessively during and after surgery. It will also slow down the healing process. He told me to come back in a month. I was already on the surgery table. I felt so bad. My primary care doctor told me to take Ibuprofen to help with the pain while keeping the Norco at 1 every 4-6 hours. I told him I couldn't afford any down time and I'd sign a waiver. He finally agreed and called in a blood transfusion tech just in case.
During the surgery, he lowered by blood pressure and everything went well. I didn't bleed as expected and had my blood drawn the next day. The results came back great. Dr. M is very good in this field. My tib/fib procedure was tough but oh boy, the femur procedure was at least 3-4 times worst. Whatever LAGrowin went through, I went through almost the exact same thing. The pain was so bad that 4 shots of dilaudid right after the surgery didn't help. I was still in so much pain. My pain was very bad for another 4 hours. However, Dr. M took me off the dilaudid the very next day to transition me to Norco. The pain was so bad that I had a fever a least 3 times. The only positive thing this time around is that I was able to pee after about 2-3 hours whereas I wasn't able to for 1-2 days last time.
I was immobile on Thursday and Friday. I had no control of my legs and getting to the edge of the bed to pee was a challenge. I'd be sweating like a pig every time I attempted to get to the edge of the bed to pee. Most of the nurses recognize me and call me brave for doing 2 procedures just one month apart. I know this is not a good idea but I can't afford anymore downtime. I need to get back to work as soon as possible.
I improved a little bit on the second day. I trained myself to pee in the urinal while waiting for my femur procedure and being able to pee in the urinal is extremely helpful. The driver from Affinity came pick me up today. I'm now at the hotel with my mom and sister. I can finally get on and off the bed by myself. The process takes a lot of time and effort. My pain is currently manageable with Norco. The pain in my femurs is so intense that I don't even notice the pain in my Tib/Fib anymore. Hopefully, the pain will continue to be manageable for days to come. I forgot to mention I had a really good nurse for both surgeries and she truly made the process less painful.
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Wow, you're a trooper. Glad that taking the ibuprofen didn't lead to any complications. It can be a difficult decision when timing is a big factor. Hope that your pain becomes manageable in the coming days.
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Thank you, Android. I exercised so much at the hospital that some of the incision sites started to bleed again. I wanted to be able to move so bad that I tried really hard and to the point where the physical therapist had to step in to stop me. I will try to keep everyone posted every step of the way so any potential CLL who wants to do both bilateral tib/fib and bilateral femurs at the same time can gain from my experience before having to go through with it.
I know the tightness is going to be very bad as I’m lengthening both regions at the same time. However, I will try my best to deal with the extreme tightness. Dr. M said the reason I was experiencing slow or non bone growth was due to me taking the Ibuprofen. The point to take away here is do not take Ibuprofen and listen to your CLL dr., not your primary care dr. Lol.
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Hell Optimistic1, glad to hear that you're well overall and that you were able to get through that obstacle caused by the ibuprofen.
What you're doing is admirable. I can't even imagine, but as you know time flies and before your know it you'll have passed the more difficult weeks.
Good to know you have family with you.
Call me if you like when you're up to it and I'll share some tips I learned. Things will get much easier between weeks 2-3.
Get some rest and keep us posted when possible. Congratulations!
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Hi LAGrowin,
Thank you. I have been reading your diary over and over to understand and know what to expect for my condition. Thank you very much for taking the time to put it together. People like you and those who came before us really laid the foundation for a stronger CLL community. I truly appreciate it.
I'll be in Burbank until this Saturday. I'll let you know if I need anything. Thank you and good luck to you on reaching 2 inches. I'll update everyone on here about my condition now.
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5th day post-op (Surgery was on 3/15/18): I have been dealing with the pain and immobility since the surgery so I didn't really have the energy to do anything or to continue this diary. I feel better today and was able to get off the bed last night with less effort than before. I having a locked knees condition now. It started since yesterday morning. I notice that whenever I sleep for over 4 hours straight, I experience the symptom. Therefore, if you want to avoid experiencing this condition, try to sleep only about 2-3 hours at the time. I think the drawback from this is your body won't heal as fast compared to if you're able to sleep longer.
I am having regular bowl movements now. I notice that eating oranges, strawberries, and drinking milk in addition to taking stool softener helps with the bowl movement. I have locked knees every morning now and I spend about 30 to 45 minutes to stretch and it would go away. I haven't regained much of my flexibility but enough for me to move around. I exercise every time I have a chance and I take a norco before I do that. This helps with the pain. My pain is much more manageable now. I don't want to jinx it but I don't feel much pain in my tib/fib region anymore. I haven't experienced any double attacks from both my tib/fib and femurs at the same time for the last 2 days. My tib/fib have been good to me. I still experience some pain when moving in and out of the wheelchair, in and out of bed and onto the toilet. However, I feel this pain will go away soon. My appetite is not completely back yet. I'm back lengthening 3x a day at .25mm on my tib/fib now. I'll see Dr. M this Friday for my femurs first post-op. Let me know if you have any questions now.
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Thanks for updating even with all the pain and discomfort.
If you can manage to do it, maybe you can change your sleeping habits a bit, like biphasic sleep (https://www.stevepavlina.com/blog/2011/03/biphasic-sleep/). Could tough when you have appointments to keep, not to mention the unpredictable cycles of pain. Glad that your tibias are manageable now.
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Hi Android,
I think I know what you're talking about. I saw a video clip on YouTube about it as well. I don't think I have the energy or the will power to do that now but it's something worth considering when this is all set and done. Thank you for the information.
Optimistic1
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10th day post-op: I had my first post-op appointment on March 23th for my femurs and flew back home on March 24th. I was given the ERC machine and instructed to lengthen 4x a week and .33 mm each time. After that, I will go down to 3x a week and also at .33 mm each time. My pain is getting better but every time I move around in a car or fly around, it aggravates and taking Norco doesn't really help much. I have more pain on the right of my right thigh. It seems to be constant and I try to stay still to not aggravate it. My thighs are still really tight and stretching does bring pain but I have to stretch to get rid of the tightness. Fortunately, I don't feel much pain in my tib/fib anymore.
I also had my x-ray for my tib/fib at the post-op and I continued to have no bone growth in this region. Dr. M attributed this 100% to me taking Ibuprofen for 3 weeks immediately after the surgery. I did some research and it's true that taking Ibuprofen blocks the production of prostaglandins, which are chemicals made by the body to help the healing of broken bones. When these chemicals are blocked, theoretically, bone healing can be delayed. I have to stop lengthening my tib/fib for 5 days then go back to 2x a day. Dr. M recommended taking Silica in addition to Vit. D and Calcium. I'm still researching the right one. Now that I'm home, I will try to eat health and have a more consistent diet plus taking all the recommended supplements. That's pretty much all the updates so far.
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Bilateral lengthening is a very bad choice.
It puts great stress to the body and to soft tissues and it is orobably the reason why you have poor bone growth.
Even 1 segment LL is very stressful for the body, 4 fractures at the same time is too much.
I thought that Mahboubian was a good doctor but doing 2 segment LL at the same time means he cares more for money than for safe results.
After that I put him out of my list for my second LL.
Anyway I hope you'll become better.
Keep strong.
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18th day post op: It's been awhile since I last updated my journal due to the constant pain I am experiencing after I had my femurs done. I think because my body was substantially weakened after my tib/fib procedure (February 15, 2018), I experience more pain when I underwent another surgery (March 15, 2018) almost immediately right after. PLEASE DO NOT DO WHAT I DID. Only do one surgery at a time, completely recovery, and then do another one. I can't afford to do that. I own and run a company. I'm at the peak of my career. I have to take major losses every day that I don't work. Therefore, I cannot afford anymore downtime. If you're working and have to take a break or quit your job, do it. It's not that bad except that you might not have enough money to carry on with life thereafter. My point is you should do this surgery as soon as possible. You don't know where you'll end up in life and you might be in a position where money is no longer an issue but you just can't set aside 4-6 months to do this surgery.
In addition to financial losses, I have staffing problem at my company the last couple of weeks. My manager decided to quit and only gave me two weeks to find a replacement. He's a very intelligent employee so it's going to be tough to find someone like him in such a short period of time. My other manager will be taking her maternity leave soon so I have to hire someone to do her work while she's gone. I've been reviewing resumes and interviewing candidates for these two positions. To make matters worse, I got hit with 3 HOA bills: 2016, 2017, and 2018 for a total of almost $20,000.00. I own a new building where my company is operating in and never got the bill in 2016 or 2017. All of the sudden, they demanded that pay all 3 years together. I did pay but realized that they inflated many charges and some of the charges are don't even exist. I proposed that all owners meet to resolve all issues together. My birthday was last week so I'm 34 now and it wasn't a good birthday as you can see. It's very difficult for me to handle these issues due to the constant pain I'm experiencing. I'm in my third week of my femur procedure but Norco doesn't work that good anymore. I still experience pain with pain meds. The pain level with pain meds is still around 3-4 whereas it was 0-1 before the femur procedure.
I feel a little better today and the nerve pain on the right side of my right thigh is not so bad with pain meds. I resumed lengthening my tib/fib a couple of days ago and I went down to 3x a day on my femurs. Nighttime is the worst and especially when I exercise (PT) during the day. I can only sleep 1-2 hours at night and 1-2 hours during the day due to the constant severe pain in my thighs. My mom massages my feet for hours during the day and at night to help with the pain. It helps a little. My mom is getting tired doing it so my female friend is taking over. I think foot massage is very helpful with pain and especially when you're waiting for the pain meds to kick in.
My appetite is somewhat okay now but not as good as before when I had my tib/fib procedure done. I have gained about 1 inch in my tib/fib and .5 inch in my femurs. My legs look so long now. I think part of it is because my legs got so skinny so they give the impression that they are much longer than they really are. I'm happy to see my legs getting longer. I don't feel the tightness in my tib/fib and calf muscles yet. I feel a lot of tightness in my thighs and I think it's the effect of the surgery as I've only lengthened less than .5 inch in that region. I'm really worried that they will get tight soon and since I'm lengthening both regions at the same time, my lengthening will be substantially limited. However, at least my proportion will be better compared to if I only lengthen 1 region. The other concern I have is the lack of bone growth. I didn't have much bone growth based on my last x-ray. I stopped taking Ibuprofen (main culprit) about 3 weeks ago and have been taking Vitamin D and Calcium religiously. I am hoping to see some bone growth at the next post op with Dr. M. I have already booked my flight and will be flying back home after the post-op in the same day.
Tips:
1. Try not to move your legs so much unless you need to. It's okay to exercise but when you're done, rest and get some sleep so the muscles can heal.
2. If you can pee in the urinal, do so to limit the amount of times you have to get in and out of bed.
3. Get foot massages but only at the bottom of your feet. My calves are still sore from the tib/fib surgery.
4. Don't wait for your pain to get to so high before doing something about it. Rectify it right away because it will take longer to bring down your pain when it's at 8 or 9.
5. If you can only sleep a couple of hours at night, get some sleep during the day.
Any questions, please feel free to ask me.
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Phew, that's intense. Maybe once it's all said and done you'll be happy, but at this moment in time, it's painful and excruciating. These are the kinds of things we tend to forget after some time has passed, so it's good to have it in writing now that it's a real struggle that should be avoided if at all possible.
Sorry to hear about the troubles you're having with your business. When it rains, it pours... But it will eventually stop.
Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.
Sucks to not have an appetite, but eat anyway. Make it your job to eat, a box you have to check off by end of day. Let your body do the heavy work by feeding it.
And good tip about sleep, no need to stick to the once a night schedule like everyone else. Every minute helps!
Best of luck.
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Thanks for your update.. Very nice of you to keep us posted amidst all your problems... I wish you all the best
So te be clear.. you now have 4 bones with a nail inside? And I guess you can/cannot get up from your bed/move alone(crutches, wheelchair)? When do you expect to be walking unaided/without crutches(optimum prognoses)?
So this is what I have to endure in the (hopefully) near future(minimum10cm/tibia/femur)? I hope I'll have your guts/stamina
get well, my friend..
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Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.
At the Paley Institute, they recommend Tylenol. A lot of the others have anti-inflammatories which can apparently impede bone growth.
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At the Paley Institute, they recommend Tylenol. A lot of the others have anti-inflammatories which can apparently impede bone growth.
Thanks, found the info on this page (http://paleyinstitute.org/centers-of-excellence/cartilage-repair/what-is-cartilage-repair/cartilage-repair-procedures/).
You may use Tylenol (acetaminophen) for pain control following surgical intervention. However, you should refrain from using any anti-inflammatory for the first year following surgery as it can slow the growth of your cells. These anti-inflammatory medications include medications such as Advil, Aleve, Ibuprofen, Naproxen, and Celebrex.
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I had my first x-ray yesterday and I thought I saw some early bone consolidation and my fibula bones are not in alignment. I emailed Dr. M some of the images and asked for his opinion. He said everything looks fine and my bone is generating at an ideal rate.
So Dr. M said about the March 7 x-Ray's that bone was generating at an ideal rate.
Then a week later...
I had my second x-ray at Dr. M's office and was informed that my bone growth is not so good. He measured my distraction at 1.5 cm but I measured it at 1.35 cm. He said there's little or no bone growth in my fibula bone.
Can the x-rays show an "ideal rate" then a week later, "growth not so good"? You were taking Ibuprofen all along. What changed?
Or is looking at x-rays not that reliable for determining bone growth? Unicorn888 might suggest the same:
- Watch your fortnightly XRAY carefully, needs to show growing and bridging CALLUS (no matter how faint), don't rely blindly on your doctor
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OverrideYourGenetics,
Based on my recollection, I didn’t start taking Ibuprofen until after or a couple of days before the first x-ray was taken. Therefore, there were signs of bone formation. However, when I took the second x-ray, was on Ibuprofen for about 2 weeks. That’s why there was no bone growth during those 2 weeks. My doctor didn’t know I was taking Ibuprofen at that time and I didn’t know it could delay my healing process. The last time I took Ibuprofen was the night before my femur surgery, March 14, 2018). It’s been 3 weeks since I stopped taking it so I’m hoping to see some bone growth tomorrow when I take my x-ray or I have to look into a bone graft procedure which I don’t like. My Dr. was very mad when he found out I took it. I feel so bad and shouldn’t have listened to my primary care doctor. I didn’t want to abuse the Norco so I took it with Ibuprofen to increase its effectiveness and it did.
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Thanks, found the info on this page (http://paleyinstitute.org/centers-of-excellence/cartilage-repair/what-is-cartilage-repair/cartilage-repair-procedures/).
I didn’t know that until after I stopped taking Ibuprofen and started doing research. I’m so worried now. I hope everything will turn out to be okay in the end.
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Honore,
True. 2 nails in the Tibia bones and 2 in the Femurs. Little or no pain in my Tib/Fib region. Also, I r covered much faster after my Tib/Fib surgery. I don’t use crutches in fear of falling. I move around with my wheelchair and practice standing and walking with my walker. I can get in and out of bed pretty easy. I can move around the house, get onto the shower chair, dress myself and some other things on my own. However, there’s a strategy in every move I make. I still can’t get the wheelchair in and out of my car by myself now.
I’m hoping to regain my ability to walk by the end of August. My legs are so weak now. I’m still in a lot of pain from my femur surgery so it kinda discourages me from fully exercising. I think gaining 10 cm will be a challenge because the tightness is double since I’m lengthening both segments at the same time but let’s see.
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Phew, that's intense. Maybe once it's all said and done you'll be happy, but at this moment in time, it's painful and excruciating. These are the kinds of things we tend to forget after some time has passed, so it's good to have it in writing now that it's a real struggle that should be avoided if at all possible.
Sorry to hear about the troubles you're having with your business. When it rains, it pours... But it will eventually stop.
Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.
Sucks to not have an appetite, but eat anyway. Make it your job to eat, a box you have to check off by end of day. Let your body do the heavy work by feeding it.
And good tip about sleep, no need to stick to the once a night schedule like everyone else. Every minute helps!
Best of luck.
Android,
I wasn’t warned about it or I’d have never taken it. My primary care doctor recommended it. ;(
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7th week post-op on tib/fib and 3rd week post-op on femurs: My pain is improving but I still can't sleep at night. I get about 2 hours per night so I try to get some sleep during the day which is difficult for me as I have to to PT, exercise, and work. The pain on my left thigh is improving a little bit. I experience more tightness now. PT is painful and exhausted and I'm having it 5 days a week now. My PT guy is getting better. His wife is also a PT and a professor at a University. I think he consults with her about my condition so he has a lot of new stretching routines that help me with my sciatic nerve. I'm not eating that well so I'm drinking whole milk, soybean milk, and Ensure milk. I also take Vit. D, Cal., Vit. K1 & K2, and Salica.
I had my x-ray yesterday. Looks like I have some bone growth in my Tib/Fib but I can't confirm until I hear back from the doctor. You can click on the links so see the images. The first link has my tib/fib images and the second link has my femur images.
https://imgur.com/gallery/dPAXT
https://imgur.com/gallery/PrYyV
I'm still lengthening 2x/day on my Tib/Fib at the rate of .25 mm each and 3x/day on my Femurs at the rate of .33 each. I don't mind distracting slowly because it will help with the tightness. I just saw OverrideYourGenetics' diary and he is also doing bilateral Tib/Fib and Femurs. What a brave man. I'll be following his diary to see if he has any tips. For now, I don't have any new tips.
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Thanks for the update, x-rays are great to see too. Hard to see much callus formation, the images are a bit small. Odds are you're fine.
Keep it up, milkman! I actually drink Schmilk (http://superbodyfuel.com/shop/schmilk-subscription/) a lot (I like chocolate flavor, just add milk; I also add whey protein), I might lean on it often during my journey.
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Hi Optimistic1. Hope that things have improved for you a little. I admire your courage to get both of these surgeries out of the way together. It will be over before you know it and you'll be consolidating.
I stopped distracting just over 1 week ago and already feel a huge improvement in my legs (within the past few days).
Keep us posted. Wishing you well.
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Hi Optimistic1,
Wondering how you are doing ? Hope things have improved for you. I'm sure you are coming to the end of your lengthening soon?
Wishing you all the best.
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Hi Optimistic1,
Wondering how you are doing ? Hope things have improved for you. I'm sure you are coming to the end of your lengthening soon?
Wishing you all the best.
Hi LAGrowin,
Thank you for checking in. I've been dealing with a lot of business matters and personal life lately. Also, I'm not really in a good mood due to the fact that I don't think my lack of bone growth situation is improving. The bone growth in my femurs is okay but I don't see anything in my fibula bones. This really scares me as I don't like stem cell injections or undergoing a bone graft procedure. Dr. M instructed me to keep my lengthening rate in my tib/fib at .25mm each and 2x a day. This really slows down my progress. Therefore, I think I'm just barely half way done and this is my third month (11th week) for the tib/fib and second month (7th week) for the femurs.
How's your recovery? Are you experiencing any tightness anymore? If so, to what degree? Any pain and where? I'm so happy for you. Are you walking unassisted soon?
Optimistic1
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Hi Everyone,
It’s been awhile since I last updated my diary. I’ve been dealing with a lot of matters in by business and personal life. I just had my x-ray done and looks like there’s no progress on my bone growth or the lack thereof. This worries me as I do not want to undergo stem cell injections or bone graft procedure(s). I’ve been doing almost everything instructed. I guess it’s just my body that doesn’t generate bone sufficiently. I posted the x-ray images here for everyone to see. Please take a look and let me know especially in my fibula region if there's still hope. Looks like there’s no progress in there.
I’ve been lengthening very slowly in my tib/fib region: .25mm and 2x a day. I’m currently lengthening at a rate of .33mm and 3x a day in my femurs. Currently, I’m down to 3 Norco a day and I work every day for 4-5 hours a day. I eat 3 meals a day. I take Vit. C, D, Cal, and Celica. I also started taking Vit. B12 to give myself some energy to go to work. I drink 2 glasses of almond milk and 1 Ensure protein shake a day. I do PT 6 days a week and stretch on my own 4-5 times a day. I stretch every time I distract/lengthen. The only thing I think I’m lacking is sunlight. I don’t go in the sun that much. Any advice on how to increase the rate of new bone formation is much appreciated. Thank you.
Tib/Fib
https://imgur.com/gallery/rmYOnFq
Femurs
https://imgur.com/gallery/h8YMPQO
Optimistic1
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I wouldn't say there's zero growth in your tibias, there is definitely some clouding in there. I would really try to get some sun Optimistic, it seems to help a lot.
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both look good.
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New Update:
I saw Dr. M last week for my post-op for both tib/fib and femurs. Dr. M examined my x-ray and confirmed that my condition, lack of bone growth, has improved a little. Therefore, he doesn't feel the need for a bone stimulator and also did not mention stem cell injections. He said that I should get more sunlight. I didn't have any sunlight since the first surgery (February 15, 2018). The most sunlight I ever received was through the windows of my car while driving to work (10-15 minutes each trip). However, it's being weakened by the tints on my widows and my pants. Besides the Ibuprofen I initially took for about 2-3 weeks, the lack of sunlight could also be the reason why my bone growth was weak. No wonder why I couldn't grow any new bone even when I was eating healthy, taking all kinds of supplement, and drinking 3 different kinds of milk daily. I'm now sunbathing 15 minutes a day and I've been doing it for the last 3 days. We'll see if my bone growth will improve at the next post-op.
I don't know if it happens to you as well but my measurement is always a little off compared to Dr. M's. He measures the gap on my bones from the x-ray and I measure by multiplying the number of days I've lengthened by the number of times I lengthen per day and the amount I lengthen each time to get the total centimeters. However, Dr. M's number is always about half a centimeter more than mine. Maybe there's something wrong with my ERC machines.
According to Dr. M, I have lengthened about 9 centimeters in total (5 in my femurs and 4 in my tib/fib). According to my own measurement, I only got about 8 centimeters. That's a big difference. My physical therapist measured my height last Friday (May 11, 2018) with his own tape measure. He measured very carefully and by each segment such as lower leg, upper leg, and from there to my head in addition to the typical measurement from head to toe. I was so surprised when he said he got 70 inches (5'10) and that I'm 2 inches short of being 6 feet. I told him it's impossible because based on my own measurement, I should be around 5'8 or 5'8.5. My female friend measured me about a month ago and I was at 5'7.5. Remember, I started out at 5'5 or 5'5.5. Just to recap, I started lengthening my tib/fib on February 23 but took a break for 2 weeks due to lack of bone growth and can only lengthen 2x a day at .25 mm each. I started lengthening my femurs on March 23 at 3x a day and .33 mm each time. I'll have Dr. M measure me at the next post op just to be sure.
My legs/knees are really tight and it's all from my femurs. I have knee pain more often now. I started having problems with my femurs from the get go. Tib/fib seems like a walk in the park after the first 3-4 weeks. No pain, just some discomfort. I can no longer stretch my legs out all the way. I get about 150 to 160 degrees. I can do all other stretches without any major problems except that I lose my flexibility slowly every day. I can still get my heels to pretty close to my butt, about 2-3 inches away. Based on my reading of the diaries on here, the tightness with stretching the legs out all the way is common after 5 centimeters have been lengthened and it varies from person to person. However, it's so tight now that I'm worried I might pop my nerves. When I stretch my legs out all the way, every inch of my legs is very tight. My PT said last Friday "wow, you're so tight, are you sure you still want to keep going?" What do you guys think?
I still can't sleep for more than 1-2 hours a night. Sometimes I'm able to sleep for 4 hours but it's rare. Last night was really bad. The pain escalated to about 7-8 and it prevented me from getting any good sleep. I took a Norco at 1:39 am I was able to sleep a little after that. Of course, I woke up every 1-2 hours. I feel much better this morning. Currently, I don't have any pain and I just finished my stretching session (45 minutes) and riding my indoor bicycle (10 minutes). Thank you for reading. Let me know if you have any questions. Your comments and suggestions are always welcome.
Optimistic1
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That's great to hear that you are getting better Optimistic1. Getting some sun is definitely going to help. I think I may have seen you at Dr. M's office last week, were you there on Tuesday? He also measured the gap in my femurs to be longer than what I thought they should be. He came up with 6.8 when I should have been at 6.5cm. I am definitely going to go by my measurements rather than his, he even said there will be some error trying to measure from the x-ray.
Sorry to hear about the tightness you are experiencing though. That's one of the more difficult aspects of doing quadrilateral lengthening, because even though the bones are separate all of the nerves and tendons are connected. If I were you I would probably aim for 12cm total, 6 and 6 on each segment. However if it becomes unbearable I think 5 + 5 would still be a really nice gain.
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That's great to hear that you are getting better Optimistic1. Getting some sun is definitely going to help. I think I may have seen you at Dr. M's office last week, were you there on Tuesday? He also measured the gap in my femurs to be longer than what I thought they should be. He came up with 6.8 when I should have been at 6.5cm. I am definitely going to go by my measurements rather than his, he even said there will be some error trying to measure from the x-ray.
Sorry to hear about the tightness you are experiencing though. That's one of the more difficult aspects of doing quadrilateral lengthening, because even though the bones are separate all of the nerves and tendons are connected. If I were you I would probably aim for 12cm total, 6 and 6 on each segment. However if it becomes unbearable I think 5 + 5 would still be a really nice gain.
Short2tall,
Yes. I was there. I was trying to be as discrete as possible because I look horrible now. This process really negatively altered my appearance from hair to skin to muscle mass. However, these things could be fixed easily once I'm done with the lengthening process. You're correct about all the nerves and tendons being connected. Both of my legs are really tight now and I think I'm at about 9 centimeters in total.
Yes. I'll try to get to 12 cm on both segments combined and if I can't get there, I'll stop. I don't want to incur any permanent damage to my knees/legs.
Looks like you're doing great. Keep it up. You're almost there.
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Hi Optimistic1,
Good to see you are doing relatively o.k. but the tightness must be a killer. If it’s getting too much for you, have you considered the option of stopping to let yourself heal up, and deciding a year down the line if you want to re-break and go for a few extra centimetres then? Obviously more expensive but I think it would be safer, less stress on your body, and you could even go for more than your planned, original goal. Also gives you a year to re-evaluate how important those few centimetres are to you and if Dr M’s measurements are correct, you may be happy with your heigh already?
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Hi Optimistic1,
Good to see you are doing relatively o.k. but the tightness must be a killer. If it’s getting too much for you, have you considered the option of stopping to let yourself heal up, and deciding a year down the line if you want to re-break and go for a few extra centimetres then? Obviously more expensive but I think it would be safer, less stress on your body, and you could even go for more than your planned, original goal. Also gives you a year to re-evaluate how important those few centimetres are to you and if Dr M’s measurements are correct, you may be happy with your heigh already?
Hi Petite888,
Thank you for your advice. Both of my legs are extremely tight now. I can't extend them all the way even with the help of my physical therapist. I think I can only get about half way and to get to about 3-4 inches off the ground, I have to suffer a lot of pain. I've been doing PT 6 days a week with 2 different physical therapists as one doesn't work on the weekend and I stretch 4-6 times a day on my own. However, when your nerve and tissues can't stretch anymore, there's little to nothing you can do but stop. I don't know who else is experiencing this and if they're, how are they dealing with it other than toughing it out?
I did take a break for 1 day and it helped a little bit. I think I'm done after this. No more surgery. I'll keep pushing until my next post op (3 weeks away). I'll ask Dr. M to measure me to see if I'm really 5'10.5. If that's the case, I'll stop immediately.
I'm dealing with so much in my personal life. I'm also dealing with so much at work. My company is suffering because of my immobility. While my employees are good, it's not the same without me at the forefront of every battle. We're losing clients and our first quarter revenue had decreased substantially. The second quarter revenue is not looking so good either. Also being on painkillers all day everyday for 3 months straight can really change one's personality/behavior. When you factor in the many sleepless nights and pain and suffering, it is scary. I commend all the limb lengtheners out there for going through with this. They are the true warriors. I'm not being greedy for doing both segments at the same time. I just can't afford any downtime. I'm already seeing a setback in my career due to the downtime.
How's your situation? Is it getting any better? Dr. M is good in a sense that he knows when to stop and/or slow down the distraction. He made me stop twice and reduced my distraction rate until there was some bone growth in my tib/fib. I hope everything will turn out fine for you.
Optimistic1
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Petite888,
I just realized you haven’t done CLL. My advice to you is to do a lot of research on your doctor and you have to really need it to make it worth it. If I were at least 5’8 I’d have never subjected myself to this painful process. I was only 5’5 or 5’5.5. Even with lift, I wasn’t able to get to average height and I have a limit on lift, never more than .75 inch plus a 1 or 1.25 inch shoes. However, being at this height didn’t affect anything in my life. I chose this procedure mostly for personal fulfillment. I feel I’ve accomplished so much in life plus with my personality, I was not meant to go through life in a 5’5 body. I’m not saying being 5’5 is bad in general. Many people who are even shorter than that but are living a happy life. In fact, it’s average height in several SEA countries, like Vietnam. Best of luck to you and feel free to PM me if you have any questions.
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Petite888,
I just realized you haven’t done CLL. My advice to you is to do a lot of research on your doctor and you have to really need it to make it worth it.
I am trying to do all of my research presently, but it’s difficult to say the least. I want Precice, but all the established Dr’s who use Precice are thousands of miles away, and I would need to do it somewhere I could easily fly back from. It would be really difficult for me to stay in the states or Korea for 3 months as I would miss my kids too much.
I know how you feel when you say you don’t feel like you were meant to be your height. I think most of us here feel cheated in that regard. My mum is a good 3 inches taller than me and I always though I’d reach her height at least.....soo unfair when I stopped growing at 15!
Thank you for taking the time to message even though you must be going through hell at the moment. I am rooting for you ;)
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Sorry to hear about the problems you're having, both CLL and your business. The added stress doesn't help either situation, I hope that you recover from them soon. Wishing you the best.
And I understand your message about not needing the procedure but wanting it. I could have been fine without ever knowing about it, but when I found out, I made it my mission to learn more about it and someday do it. You're almost there!
Petite, about you wanting to reach your mom's height, pretty much what my mom said too. We all aspire to fit in with our environment.
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I am trying to do all of my research presently, but it’s difficult to say the least. I want Precice, but all the established Dr’s who use Precice are thousands of miles away, and I would need to do it somewhere I could easily fly back from. It would be really difficult for me to stay in the states or Korea for 3 months as I would miss my kids too much.
I know how you feel when you say you don’t feel like you were meant to be your height. I think most of us here feel cheated in that regard. My mum is a good 3 inches taller than me and I always though I’d reach her height at least.....soo unfair when I stopped growing at 15!
Thank you for taking the time to message even though you must be going through hell at the moment. I am rooting for you ;)
Petite888,
I know how you feel. I stopped growing at 14 I think (7th or 8th grade). My dad was 6'0 in his younger years and he's about 5'11 now. My brother is 5'10 and I'm only 5'5. Can you believe that? Lol.
Think of it this way: Your height was taken away from you but you were given something else much more value such as intelligence and hard work. With those two qualities, you can achieve so much including paying for this CLL procedure. Sometimes I feel that I'd have only achieved about 10% of what I have now if I were going through life as a 6 foot tall man. I'd have been so arrogant and wasted my life away with partying and sleeping around. Now, I can fix my short stature issue and still retain what I've accomplished. Good luck and feel free to PM should you have any questions.
Optimistic1
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Sorry to hear about the problems you're having, both CLL and your business. The added stress doesn't help either situation, I hope that you recover from them soon. Wishing you the best.
And I understand your message about not needing the procedure but wanting it. I could have been fine without ever knowing about it, but when I found out, I made it my mission to learn more about it and someday do it. You're almost there!
Petite, about you wanting to reach your mom's height, pretty much what my mom said too. We all aspire to fit in with our environment.
Android,
Thank you. I'm trying my best everyday as I'm winding down this painful process.
Optimistic1
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Update:
It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
My legs, nerves, tissues, and everything from my waist down are extremely tight. I can't stretch my legs more than half way. I can't stand up straight and my duck a** is very bad. I feel a constant pain in my right thigh around 8:00 - 9:00 pm now. This pain doesn't go away until about 8:00 am the next day. I still can bend my knees almost all the way on my left leg but not so much on my right leg.
On top of all these, I'm dealing with other personal and business matters. I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed off at everything so easy now. I also get pissed off at everyone easily now. I really try to control myself at work.
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'm seeing Dr. M next week for my post-op appointment. I'll ask him whether I should stop or continue to lengthen until I reach my goal.
Optimistic1
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Update:
It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
My legs, nerves, tissues, and everything from my waist down is extremely tight. I can't stretch my legs more than half way. I can't stand up straight and my duck a** is very bad. I feel a constant pain in my right thigh around 8:00 - 9:00 pm now. This pain doesn't go away until about 8:00 am the next day. I can bend my knees almost all the way on my left leg but not so much on my right leg.
On top of all these, I'm dealing with other personal and business matters. I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed at everything so easy now. I also get pissed off at everyone easily now. I really try to control myself at work.
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your only safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'm seeing Dr. My next week for my post-op appointment. I'll ask him whether I should stop or continue to lengthen until I reach my goal.
Optimistic1
Optimistic1, I am sorry you're feeling this way and dealing with so much. Having just done femurs, being a business owner, and such a busy person, I fully understand what you are saying. I felt like that also, and this effect of the surgery has been discussed here on the forum recently. It all will pass.
The main thing is that you're not causing any damage and that you have bone growth in the tibias now.
Call me, let's talk, you have my number, if not PM me.
The sleepless nights with pain are the worst. You are still the same man you were, if not better. This is temporary. Keep you're eye on the prize and end goal. It is so worth it in the end.
All the best !!
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Update:
It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
My legs, nerves, tissues, and everything from my waist down are extremely tight. I can't stretch my legs more than half way. I can't stand up straight and my duck a** is very bad. I feel a constant pain in my right thigh around 8:00 - 9:00 pm now. This pain doesn't go away until about 8:00 am the next day. I still can bend my knees almost all the way on my left leg but not so much on my right leg.
On top of all these, I'm dealing with other personal and business matters. I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed off at everything so easy now. I also get pissed off at everyone easily now. I really try to control myself at work.
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'm seeing Dr. M next week for my post-op appointment. I'll ask him whether I should stop or continue to lengthen until I reach my goal.
Optimistic1
Both segment LL is the biggest mistake an LLer could do.
I lost respect to any doctor that performs it, although the patient is responsible too because we wrote here thousand of times that LL is not a time trial and the patient should do one segment and then wait at least 1 year till consolidation stops to do the other segment.
Anything else is disastrous. Thats why you have so much problems while the strong majority of patients who did LL with precise 2 in only one segment have very good results without much problems.
Imo you should stop asap lengthening both segments. You should decide which segment you want more to continue lengthening and lemgthen only that for some cms more. So much pain and stiffness is not normal at all. Your body gives you ekergency signs that you should hear before the condition becomes irreversible.
I wish you ti be better in the next weeks.
Keep strong!
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Both segment LL is the biggest mistake an LLer could do.
I lost respect to any doctor that performs it, although the patient is responsible too because we wrote here thousand of times that LL is not a time trial and the patient should do one segment and then wait at least 1 year till consolidation stops to do the other segment.
Anything else is disastrous. Thats why you have so much problems while the strong majority of patients who did LL with precise 2 in only one segment have very good results without much problems.
Imo you should stop asap lengthening both segments. You should decide which segment you want more to continue lengthening and lemgthen only that for some cms more. So much pain and stiffness is not normal at all. Your body gives you ekergency signs that you should hear before the condition becomes irreversible.
I wish you ti be better in the next weeks.
Keep strong!
Body Builder,
Doing both segments at the same time is difficult. However, it's the safest option for the most gain and also to maintain proportion. I started out pretty short (5'5). Therefore, to get to 5'10 or 5'11, doing both segments seems to be to most viable option. The process is dangerous and extremely tough. However, if I did either tib/fib or femurs, I'd have stopped after either procedure and never look back. Furthermore, I can't afford much downtime and I don't think I have the courage to go through the process ever again. My business has suffered so much without me taking the lead. I have to outsource so many projects and it's such a major loss to my company. Now, I just want to recover as fast as possible and come back to work like an effective employer/leader that I used to be.
I did both segments and I'm almost done. Everyone's situation is different. I still don't encourage anyone to do both segments at the same time unless they really need it. OYG also did both segments and I think he has just stopped distracting recently. I haven't heard from him. Thank you and I'll keep everyone posted on my progress.
Optimistic1
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Update:
6/1/18: I had my post-op today and the x-ray images show I have great bone growth in all regions: tibiae, fibulae, and femurs. I've lengthened a total of 7.2 cm in my femurs and my legs/knees are extremely tight. Therefore, Dr. M instructed that I stop distracting my femurs. I've lengthened a total of 5 cm in my tib/fib. I'm still flexible with my feet and ankles so he said I can lengthen another centimeter at the rate of .25 mm each and 3x a day. That's another 2 weeks of distraction. I'll try my very best to complete this process.
My legs are so tight that I can't stretch them out all the way. I don't know if any of you faced this situation at the end of your distraction. If so, how long did it take for you to stretch your legs out all the way after the distraction phase is done? Thank you.
Optimistic1
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It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
Did your pain subside after week 3 post-femurs, and return when you passed a certain amount of lengthening? I stopped needing painkillers regularly around 3 weeks after the femurs. Occasionally I'd have some nasty tendon pain at night, but it would go away after at most a week.
Also, do you have nerve, or non-neuropathic pain? (I wrote about the different kinds of pains at https://overrideyourgenetics.com/pain). I was put on Neurontin/Gabapentin since the beginning, and while I still had nerve pain, it was in no way as bad as iamready's (a 2015 Paley quadrilateral patient, for those who haven't read his diary (http://www.limblengtheningforum.com/index.php?topic=2556) yet).
Have you tried THC? It worked best for me. CBD could work well for nerve pain.
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
Not sure if this helps, but I went through the same (as have many others (http://www.limblengtheningforum.com/index.php?topic=5545.msg86343#msg86343))... and I gave up on lengthening :( I admire you for continuing. And driving to work during distraction is just badass given what you've been going through.
But this might actually help - http://overrideyourgenetics.com/sleep/. It doubled my sleep quantity for only $200.
My legs, nerves, tissues, and everything from my waist down are extremely tight. I can't stretch my legs more than half way.
I also have lost flexibility in my ankles, from 15 degrees dorsiflexion down to 8. But after stopping lengthening the tibias, and standing on a slantboard with the walker, the flexibility is slowly coming back (10 degrees now). Hang in there! I can testify that after the pain is gone, the memory of it is purely theoretical; it's as if it happened, but in the very distant past, and not in a visceral way.
I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed off at everything so easy now.
Same here. Man how pissed I'd get when I dropped something on the floor and had to get the wheelchair next to it and bend to pick it up.... GRRR.
But you kept going with the lengthening in spite of the pain and business problems, so I'd say that motivated and ambition man is still there. And now that you're seeing the end of the tunnel, he'll be back (https://en.wikipedia.org/wiki/I%27ll_be_back)!
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'd reserve judgment on this. The new STRYDE nail is a game changer. I met the first patient and he is walking with crutches two weeks post-op. He should be walking unaided soon. Given that walking is the best PT (http://www.limblengtheningforum.com/index.php?topic=8912.0), I think flexibility and mobility will be much better for STRYDE patients.
6/1/18: I had my post-op today and the x-ray images show I have great bone growth in all regions: tibiae, fibulae, and femurs. I've lengthened a total of 7.2 cm in my femurs and my legs/knees are extremely tight. Therefore, Dr. M instructed that I stop distracting my femurs. I've lengthened a total of 5 cm in my tib/fib.
Those are amazing numbers! My left knee has been tight at only 3.5cm in the tibias and 3cm in the femurs. Most likely due to insufficient PT at home. But I developed a nasty nerve pain that combined with being fed up with the process, and my short wingspan, have determined me to stop lengthening at 3.5+3.5cm (http://www.limblengtheningforum.com/index.php?topic=5352.msg90235#msg90235).
My legs are so tight that I can't stretch them out all the way. I don't know if any of you faced this situation at the end of your distraction. If so, how long did it take for you to stretch your legs out all the way after the distraction phase is done? Thank you.
I've been in the same situation with the left knee. What helped most was the AlterG machine (http://www.limblengtheningforum.com/index.php?topic=8912.0). Brought my knee extension from ~15 degrees to zero in 10 minutes.
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hey man how is your lengthening going?
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Did your pain subside after week 3 post-femurs, and return when you passed a certain amount of lengthening? I stopped needing painkillers regularly around 3 weeks after the femurs. Occasionally I'd have some nasty tendon pain at night, but it would go away after at most a week.
Also, do you have nerve, or non-neuropathic pain? (I wrote about the different kinds of pains at https://overrideyourgenetics.com/pain). I was put on Neurontin/Gabapentin since the beginning, and while I still had nerve pain, it was in no way as bad as iamready's (a 2015 Paley quadrilateral patient, for those who haven't read his diary (http://www.limblengtheningforum.com/index.php?topic=2556) yet).
Have you tried THC? It worked best for me. CBD could work well for nerve pain.
Not sure if this helps, but I went through the same (as have many others (http://www.limblengtheningforum.com/index.php?topic=5545.msg86343#msg86343))... and I gave up on lengthening :( I admire you for continuing. And driving to work during distraction is just badass given what you've been going through.
But this might actually help - http://overrideyourgenetics.com/sleep/. It doubled my sleep quantity for only $200.
I also have lost flexibility in my ankles, from 15 degrees dorsiflexion down to 8. But after stopping lengthening the tibias, and standing on a slantboard with the walker, the flexibility is slowly coming back (10 degrees now). Hang in there! I can testify that after the pain is gone, the memory of it is purely theoretical; it's as if it happened, but in the very distant past, and not in a visceral way.
Same here. Man how pissed I'd get when I dropped something on the floor and had to get the wheelchair next to it and bend to pick it up.... GRRR.
But you kept going with the lengthening in spite of the pain and business problems, so I'd say that motivated and ambition man is still there. And now that you're seeing the end of the tunnel, he'll be back (https://en.wikipedia.org/wiki/I%27ll_be_back)!
I'd reserve judgment on this. The new STRYDE nail is a game changer. I met the first patient and he is walking with crutches two weeks post-op. He should be walking unaided soon. Given that walking is the best PT (http://www.limblengtheningforum.com/index.php?topic=8912.0), I think flexibility and mobility will be much better for STRYDE patients.
Those are amazing numbers! My left knee has been tight at only 3.5cm in the tibias and 3cm in the femurs. Most likely due to insufficient PT at home. But I developed a nasty nerve pain that combined with being fed up with the process, and my short wingspan, have determined me to stop lengthening at 3.5+3.5cm (http://www.limblengtheningforum.com/index.php?topic=5352.msg90235#msg90235).
I've been in the same situation with the left knee. What helped most was the AlterG machine (http://www.limblengtheningforum.com/index.php?topic=8912.0). Brought my knee extension from ~15 degrees to zero in 10 minutes.
Hi OYG,
Thank you for checking up on me. Here are my responses to your questions. My pain improved a lot 3 weeks after the surgery on my femurs. I managed my pain better by knowing that I must eat something every time I take the Norco. It works great. I didn't do that after the surgery on my tib/fib so I kept on having that minor pain/discomfort. I remember my mom massaging my feet several times a day for weeks.
At first I thought I have nerve pain but it's just me not eating when taking the Norco so I couldn't activate the potency of the medication. I even asked Dr. M to prescribe me some Gabapentin. It didn't work so I stopped taking it after 2 days. Several of my employees suggested that I try THC but I refused. I don't like it. Also, I don't want to set a bad precedent at the company where the consumption of THC is permissible.
I still have another week and a half to go. It's good that you're done. Good luck on your recovery. Don't worry about those who put you down for stopping the process early in light of the amount of money you've spent. They don't know what they are talking about. Only those who've been though it or dealing with it can truly understand what you went through. They don't understand the pressure we have to deal with. Though money is not an issue with me but I don't have the luxury of sitting at home and lengthening without having to worry about other things. Life goes on and we have to run, not walk, to stay ahead of everything. I don't want to throw away my career and my company.
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hey man how is your lengthening going?
Hi Doomsday,
It's getting tougher everyday as I am reaching finality in this process. I'll post an update here for everyone to see.
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Update:
2 days short of 4 months since my tib/fib surgery (February 15). I also had the surgery on my femurs a month after my tib/fib. I recap the timeline here so you guys don't have to go back to read my first journal entry.
I stopped lengthening my femurs 9 days ago after reaching 7.5 cm. My knees are super tight. I can't stretch my legs out all the way. That's the only reason why I stopped before reaching my goal of 8 cm. The pain in my femurs improved drastically shortly after the distraction. I have literally no pain in my femurs now. However, I think I might have what is normally referred to as myositis ossificans in my left femur. It is the formation of bone tissue inside muscle tissue after a traumatic injury to the area. This injury usually is the result of an acute deep-muscle bruise or repeated muscular trauma to the same spot, and rarely is caused by a bad muscle strain. I started feeling this hard knot in my left thigh several weeks after the surgery on my femurs. I ignored it thinking it could be one of the screws and because the pain in my femurs at the time was so intense that I that keep on taking the Norco to suppress it. Now, it causes me some pain when I press hard on it or when I stretch. I did a lot of research on this and Dr. M said the body should absorb it over time. I've been massaging it hoping to dissolve it sooner.
I'm still distracting my tib/fib twice a day at .25 mm each time. I was distracting 3x a day for a week then went back to 2x a day because I don't want to have any nonunion issue. My bone growth is great now but I still don't want to risk it. I am really scared of having another surgery. I think Rocky is looking at stem cell treatment in the event of a nonunion. I don't want to even think about that until the rod removal procedure. As you remember, I was having slow or no bone growth in my fibula bones. Therefore, Dr. M slowed down my distraction rate to only twice a day since March. That's why it's been almost four months and I'm still distracting my tib/fib and I'm not even at 6 cm.
I started taking Tylenol PM at night to help with my sleep. My sleep has improved a little bit. I'm down to 1.5 to 2 Norco a day. My pain is at the minimal during the day and I only take the Norco before stretching. Night time is bad but it has improved a lot since I stopped the distraction on my femurs. I have another week and a half before the completion. Everything else is the same. I'm dealing with the stress at work and also in my personal life. Something happened yesterday in my personal life and I went through an episode of depression. I stayed in bed and didn't want to eat anything. I woke up early this morning, distracted my tib/fib, stretched, completed my PT session, went to work, had staff meeting, got home at 4:30 pm and I feel okay now. No matter what, life goes on so we have to adapt and be resilient. Let me know if you have any questions.
Optimistic1
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Update:
2 days short of 4 months since my tib/fib surgery (February 15). I also had the surgery on my femurs a month after my tib/fib. I recap the timeline here so you guys don't have to go back to read my first journal entry.
I stopped lengthening my femurs 9 days ago after reaching 7.5 cm. My knees are super tight. I can't stretch my legs out all the way. That's the only reason why I stopped before reaching my goal of 8 cm. The pain in my femurs improved drastically shortly after the distraction. I have literally no pain in my femurs now. However, I think I might have what is normally referred to as myositis ossificans in my left femur. It is the formation of bone tissue inside muscle tissue after a traumatic injury to the area. This injury usually is the result of an acute deep-muscle bruise or repeated muscular trauma to the same spot, and rarely is caused by a bad muscle strain. I started feeling this hard knot in my left thigh several weeks after the surgery on my femurs. I ignored it thinking it could be one of the screws and because the pain in my femurs at the time was so intense that I that keep on taking the Norco to suppress it. Now, it causes me some pain when I press hard on it or when I stretch. I did a lot of research on this and Dr. M said the body should absorb it over time. I've been massaging it hoping to dissolve it sooner.
I'm still distracting my tib/fib twice a day at .25 mm each time. I was distracting 3x a day for a week then went back to 2x a day because I don't want to have any nonunion issue. My bone growth is great now but I still don't want to risk it. I am really scared of having another surgery. I think Rocky is looking at stem cell treatment in the event of a nonunion. I don't want to even think about that until the rod removal procedure. As you remember, I was having slow or no bone growth in my fibula bones. Therefore, Dr. M slowed down my distraction rate to only twice a day since March. That's why it's been almost four months and I'm still distracting my tib/fib and I'm not even at 6 cm.
I started taking Tylenol PM at night to help with my sleep. My sleep has improved a little bit. I'm down to 1.5 to 2 Norco a day. My pain is at the minimal during the day and I only take the Norco before stretching. Night time is bad but it has improved a lot since I stopped the distraction on my femurs. I have another week and a half before the completion. Everything else is the same. I'm dealing with the stress at work and also in my personal life. Something happened yesterday in my personal life and I went through an episode of depression. I stayed in bed and didn't want to eat anything. I woke up early this morning, distracted my tib/fib, stretched, completed my PT session, went to work, had staff meeting, got home at 4:30 pm and I feel okay now. No matter what, life goes on so we have to adapt and be resilient. Let me know if you have any questions.
Optimistic1
Hey optimistic glad things went well. That is a great height increase in the femurs congratulations. Dr M seems great.
I am no expert but I think a lot of the temporary issues you might have with the legs like he said will be naturally absorbed and I have read a lot about how after nail removal and the initial weight gain a lot of those small kinks and pains may go away completely. It is hard for a lot of us to realize in the moment but a lot of the pains patients talk about within 1 year of having the surgery etc will not always necessarily be there years down the road as the nail is removed, your body gets used to things further Pt etc.
Do you think your level of flexibility was good and positive in your experience with LL? Or do you wish you could have been more flexible as it would have helped more? Or would you say it would not have mattered and it is more genetic?
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Hey Optimistic, any updates?
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Hi Johnson,
I think being flexible helps you a little bit during the distraction phrase but not much. I was flexible before LL but lost that rapidly during the distraction phrase. You stretch to not gain/regain flexibility but to not lose it too fast when lengthening, especially during the last month. I don't think it would help much whether you stretch before or during the lengthening process, at least it was for me. However, that's just my own experience. I lengthened both segment at the same time and lengthened quite a bit so it was tough for me. Good luck.
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Hi Movie,
I've been wanting to post an update but have always been so swamped. Your inquiry motivated me so I'll update everyone about my progress now.
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Hi Everyone,
It’s been almost 5 months since I last updated you on my progress. As you may recall, I lengthened both segments (tib/fib & femurs) and also lengthened quite a bit. I didn’t reach the maximum centimeters I intended to because I don’t want to have any lifelong problem. Based on my own measurements, I lengthened 6.5 cm on my tib/fib and 7 cm on my femurs. However, when the doctor measured the actual length on my x-ray images, it appears I lengthened 7 cm on my tib/fib and 7.5 on my femurs and I almost got 6 inches altogether (5.7 inches to be precise).
I stretched 4-5 times a day during the distraction phase but it didn’t help much and I lost my flexibility slowly every day. When I completed the distraction on June 23 (exactly 4 months), the ROM on my right leg was 65% and 60% on my left leg. That was really bad. I didn’t walk while distracting because I didn’t want to bend the rods as I heard some horrible stories from others. Besides the pain and other problems with my business, it was a very smooth journey for me. No complication, no infection, or anything others experienced. I did developed myositis ossificans on my left femur but it went away shortly after I completed distracting. The pain was bad for me but went away completely and I stopped taking Norco about a week after I was done with the distraction.
Due to the fact that I was in a wheelchair for so long, my legs were extremely weak and I couldn’t even use the walker. I wasn’t able to use the walker to walk from my car to my office until early September. It took me less than a month to graduate from the walker and move on to using crutches. It also took me about a month to graduate from crutches and start using a cane. I’ve been using a cane for a week now and I think I can get rid of it in a month. I can walk unassisted now but my gait is weird. I forgot to mention that my legs are still not completely straight. They are about 10-15% ROM on the left and right. I think I can completely straighten them in about a month. I know my progress is quite so slow compared to others but keep in mind I lengthened both tib/fib and femurs at the same time (one month apart for both surgeries) and lengthened quite a bit. I am hoping to walk normally in 2 months.
I lost all of my employees except for 1 since I started the journey. I’ve been through so much and almost lost my business. I’ve been working every day (Monday-Sunday) from 8:00 am to 5:00 pm to save my business. So far, I’ve regained about 90% of my workforce. Fortunately, the business is growing fast and it’s on the right track to become bigger and better than before. Being able to work during the distraction phase really helped me save my business. I don’t want to bore you guys about my problems but just remember one thing: life goes on and nobody is going to wait for you to recover so you must anticipate and prepare for any tragedy that comes your way. After I started using the walker for about 4 days, I was rear ended in a total loss accident and was taken to the hospital. I was pushed into another car and mine was totaled as well. WTF? I know, right? Lol.
Well, it’s all worth it for me. I am about 5’11 now and with shoes and hair I can easily be over 6’0 and it feels great. My physical therapist measured me last month lying down and he put me at 6’1 but that sounds very unlikely. I wear extremely flat shoes now (less than 1/8 inch heel). Almost everyone at the firm is new so no one knows about my surgery except for that 1 employee who said I look so tall. I told her I’m the same height. She was on the subject for about 2 days and moved on. I didn’t really care. I held a meeting 2 weeks ago with all the doctors and providers in town, and I felt so powerful. They respect and look up to me like never before. Due to my acquired wealth, social status, and a high level of education, the added height really improved my life. I now feel nothing can hold me back and I can achieve anything I set my mind to. Remember, being taller might not solve all of your problems. However, it will improve your life drastically if you already had a successful life before that. As for women, I never had any problem with them before and I’m like a magnet now. Lol. However, I decided to go MGTOW for now while I am rebuilding my business so nothing to talk about on this subject.
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damn man! 166 to 180 cm must be huge. Are you worried about sitting height or were you just short legged?
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Myositis ossification is fatal in 10% of cases:-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798355/
Another fatal side effect of cll.
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Would you please ask dr. M for the same?
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good approach to take it slowly, no need to rush really It will all fall into place eventually!
dang man glad you're ok! congratulations on your added height! I'll be doing the same thing with Dr.M since I reside here in LA and the funds allow fortunately.
bless up Optimistic Wish you a speedy recovery
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Myositis ossification is fatal in 10% of cases:-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798355/
Another fatal side effect of cll.
The link and the condition you mention (which is rare) are different, is there a reason for that? It would be useful to see a paper, even a case report, of such a disorder in LL or even nailing. I can't find any
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Great result. Sounds like you have a great outlook and life anyway and this can make it even better
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Hi Everyone,
Just a quick update for everyone. Things are getting better in my professional life. Everyone at the firm is up and running. I enjoy working with the new crew a lot. They work hard and respect me a lot more than my old employees did and not rolling into the office in a wheelchair helps.
I went to True Religion and bought some new jeans last night. They only have 1 inseam and that is 34 in the entire store and it fits me so I don’t need to alter it. It is such a great feeling that only short guys like us can testify to. In the past, whenever I bought a pair of pants I would have to shorten the length or it won’t fit.
I gained about 20 lbs so I went from 145 to 165. I know a lot of CLL patients lose weight during the distraction phase. I didn’t eat a lot but I was taking Ensure protein every night and drinking 3 different types of milk daily. Plus, I was drinking the silk chicken soup mixed with herbal medicine every other night for 4 months straight. This type of chicken soup requires a lot of work that takes about 4-6 hours each day and my mom was nice enough to do that for me. She bought the highest grade herbal medicine to cook with the silk chickens. I think that’s why I was gaining weight instead of losing it. I’d recommend this to future CLL if you want to maintain your weight. I went to the DMV this morning to change my weight and height on my ID. I listed myself as 165 lbs and rounded up my height to 6’0. It is an amazing feeling.
To recap, I started using a cane on November 5 and got rid of it by November 20 (roughly 2 weeks). My gait was horrible at first but it’s getting better every day. I think I might be able to have a normal gait by the end of December. I started having pain in the inner part of my lower right tibia where the screws are. I think it is because I’ve been walking a lot and over exercising. I do about 20 minutes of stationary bike in the morning and afternoon plus 5 minutes of treadmill in the morning and 22 minutes in the afternoon. I walk around my building and to lunch during the day at work. I walk to other places like restaurants and malls on the weekend. If I don’t walk or walk less, I don’t have any pain. If I walk a lot then the pain kicks in at around 4:00 pm until I fall sleep at around 11:30 pm. The pain is about 1-2 out of 10. If I put my right leg down on its side then the pain goes away. Not bad, just bothersome. For the CLL veterans, did you experience the same thing? If so, how long did it last? What did you do to avoid exacerbating it? Thank you very much.
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Good that the risk you took turned out well for you Optimistic..I will be going for internal femur sometime..May be with Dr M,Paley or Dr R...I am starting at 166 cm and I am aiming 173..(I am realistic and not optimistic :P)But I will have to give it some time before I take the plunge due to other career/personal issues that are plaguing me right now..
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that's so cool bro, glad everything turned out in your favor
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any updates Optimistic? been a while ! how are you man? PM me I have some questions for you regarding Mr. Mahboubin just quickly lol! thanks
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Bumping an old thread. Optimistic1, you are truly amazing. Somehow you were in the depths of hell and even with non weight bearing nails precice 2 you still did quadrilaterals (at the same time!), got more than 5.5 inches, went to fk.ing work during distraction, ran your business, and didn't quit. My god this is an exemplar diary. Also shows how difficult quadrilaterals are, I could tell that you are a way above average PT and stretcher yet quadrilaterals was still too overwhelming for you. With this knowledge, im definitely not going to do simultaneous quads.
Bumping the golden threads.
If you want to update us Optimistic1, feel free. But I know you're living the life now- you probably shouldn't come back here, like many successful LL patients dont either. Amazing!