Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: mb53 on July 26, 2015, 07:15:34 PM
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So I had my surgery on the 22nd and was just discharged from the hospital about an hour ago. I don't think I'll be up for writing an extensive journal, but I'd be more than willing to answer any questions you guys might have about the operation, pain, etc.
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Have a good experience. I wish you well. I will be visiting Paley at the end of August for a consultation.
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This is getting no replies... I might be willing to do a journal if I'm bored enough. I'm only 12 days post-op.
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did it hurt?
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Do you have much contact with Dr Paley or is most of it through his fellows or other hospital staff?
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Do you have much contact with Dr Paley or is most of it through his fellows or other hospital staff?
I consulted with him in May and he visited me in the hospital the night after the surgery. My 2-week checkup on Thursday will be my third time ever seeing him. Mostly I see PAs or other hospital staff. I did, however, send him an email about something and he responded surprisingly quickly.
did it hurt?
The surgery, no, not at all. My stay in the hospital was excellent. When the pain meds wear off, however, it hurts quite a bit, and some of the stretches are incredibly painful. Nights are especially rough, and I'm usually unable to sleep. I'm only 12 days post-op so this is subject to change, but this is far from the most painful experience of my life.
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Just had 2-week checkup... everything is going perfectly. I'm currently at 15.75mm. Only 15 days post-op and I'm very independent with the walker; I'm gonna start using crutches soon.
And yes, I'll keep making minor updates for the benefit of my sanity, even if no one reads them.
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I'm reading your updates. I'll be visiting on Aug 25-26 for my consultation.
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Mb53 let me ask you what is your medication schedule? How is your pain being on that schedule? Also do you think if someone has a strong pain management support system, I.e. a pain doctor familiar with pain drugs with you for two weeks or so, will the entire procedure be manageable? Will this reduce pain to very low levels?
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Mb53 let me ask you what is your medication schedule? How is your pain being on that schedule? Also do you think if someone has a strong pain management support system, I.e. a pain doctor familiar with pain drugs with you for two weeks or so, will the entire procedure be manageable? Will this reduce pain to very low levels?
I take about 5-10mg of Oxycodone roughly every 4 hours, though I'm trying to space it out more. If you take the meds, the pain is very manageable.
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What is best and worst aspect about doing lengthening with Paley you think?
I am planning to do with him early next year.
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What is best and worst aspect about doing lengthening with Paley you think?
I am planning to do with him early next year.
The best aspect about Paley is Paley himself! The worst is price.
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Congrats on taking the journey MB.
You mentioned that you'll be on crutches, that's great being within 1 month. Do you mind sharing your height and weight? I wonder what the weight cut off is, if any (and i'm sure it's also based on how you're healing) before Paley allows you on crutches.
By the way, we are all reading and following along, just not posting as much :p
Best,
SuperUserCJ
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Congrats on taking the journey MB.
You mentioned that you'll be on crutches, that's great being within 1 month. Do you mind sharing your height and weight? I wonder what the weight cut off is, if any (and i'm sure it's also based on how you're healing) before Paley allows you on crutches.
By the way, we are all reading and following along, just not posting as much :p
Best,
SuperUserCJ
At home I consistently measured as 5'3.75" or 162cm. Here I consistently measured as 5'3.5". or 161cm. I'll just compromise and say 161.5cm. I weighed about 143 pounds going into surgery. I'm about 19 days post-op so around 163.5cm/5'4.5"-ish. I weigh about 130 pounds (yeah, I haven't been eating much). The x-rays have confirmed my new height but I don't really feel any different... hopefully this changes once I start to reach 5'6" and above.
And it's the physical therapists who decide when I can go on crutches, not Paley. I've only seen Paley twice: during my consultation and in the hospital the day after my surgery. He was out of the country for my 2-week checkup so I met with the PA. But each rod can bear 75 pounds, so I don't think they encourage walker/crutches if you weigh over 150.
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How's it's going mb? Congrats on starting your LL journey (and having a ton of $ to afford Paley lol) got a few questions, does your family know your undergoing LL? are you staying at a hotel while you're recovering from the LL procedure? What are your total costs for LL could you do a costs breakdown? Thanks mb, I'm looking into/researching LL right now so I'm trying to collect as much data on LL as I can.
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How's it's going mb? Congrats on starting your LL journey (and having a crap ton of $ to afford Paley lol) got a few questions, does your family know your undergoing LL? are you staying at a hotel while you're recovering from the LL procedure? What are your total costs for LL could you do a costs breakdown? Thanks mb, I'm looking into/researching LL right now so I'm trying to collect as much data on LL as I can.
My parents are paying for it (so yes they know) so I don't know the full cost breakdown. I'm guessing the whole thing is about $100k. Costs less than Rozbruch but more than Guichet
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Mb53 quick question. Have you spoken to anyone that has had LL in the past? Just wondering what long term effects? Will you return to at least 80% of what you were. Is there anything that could emerge health wise with regards to your legs ? What does paley say? Does he invite you to talk to previous LL's?
Any in for would be great . thanks
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Update: Today I'll reach 4cm, meaning I'm officially at the halfway point. My IT bands and hamstrings are pretty tight, but other than that I'm in great shape. It's supposed to get harder from here on out, but I'm confident I'll be able to lengthen 8cm. So far, I have no regrets.
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Congratulations mb53.
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I don't mean to rush or anything, considering you've been in and about the other thread here, but how are things going for ya thus far?
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Halfway in a month is awesome. I have no questions, but good luck. ;)
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I don't mean to rush or anything, considering you've been in and about the other thread here, but how are things going for ya thus far?
I'm doing alright. I should reach 52mm today, so roughly 65% done. I'm a little over 2-inches taller and I can definitely feel a difference.
My hip flexors and IT bands are getting very tight and I'm starting to feel some nerve pain, but I'm fine other than that. Outside of PT I have very little pain (maybe 3 or 4 out of 10 when I wake up) and right now I feel no pain at all. I take a 5mg Oxycodone when I wake up, 2 Tylenols or Aleves in the middle of the day and another 5mg Oxycodone before I go to sleep. I've honestly been really slacking in terms of doing my calisthenics outside of physical therapy, but as long as I start to do the proper amount of stretching I think I'll be able to loosen up. I feel as though I may have to slow down the lengthening soon from 1mm a day to .75mm because of my increasing nerve pain, but none of the physical therapists have made any indication that I would have to. And even if I do slow down, it would only increase my stay by about a week or so, which isn't the end of the world.
I'm still hoping to make it to 8cm, but I think as long as I reach 7cm I'll accept whatever I get. I have a little less than a month left assuming I don't slow down (28 days or so) which is still a long time, but I'm definitely reaching the end of this journey. The pain is sometimes hard to bear and it gets pretty boring at times, but it's far from the living Hell some of the diaries made it out to be. Though perhaps I'm just one of the luckier ones.
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Nice!
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Update: It's just over 2 months post-op and today I should be reaching 6.4cm (80% of the way done). I should reach 8cm on the 9th, two weeks from Friday. If there's bone retraction, it should take maybe one or two more days to reach 8cm. I'm feeling much better and my muscles are much looser since my last update. The same areas are tight, but it's much more bearable and my gait has been fixed. I'm now confident I can reach 8cm without slowing down. I may stay another week here so I can go to physical therapy while I begin consolidation, but no more than that. The difference I feel when I'm out in public is huge - and I'm not even finished lengthening. I don't think my height insecurities will be completely gone by the end of this, but I definitely feel like a different person.
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Wow, congratulations. Thanks for keeping us posted.
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Hi mb53
Thanks for your update. I am very happy for your achievement of height as well as confidence. Congrats on your success.
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I haven't updated this in a while but I finished lengthening Friday. It took about a week longer than predicted because my bones started to consolidate early. I got about 76-77mm on my left and 79-80mm on my right (purposefully, because my left leg was naturally 4mm longer to begin with). I'm going home Friday in a few days. Because my bones seem to be consolidating quickly, I'm hoping I'll be able to walk in less than 2 months. I've had more than my fair share of pain and discomfort (not to mention the cost) but limb lengthening has been 100% worth it.
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I haven't updated this in a while but I finished lengthening Friday. It took about a week longer than predicted because my bones started to consolidate early. I got about 76-77mm on my left and 79-80mm on my right (purposefully, because my left leg was naturally 4mm longer to begin with). I'm going home Friday in a few days. Because my bones seem to be consolidating quickly, I'm hoping I'll be able to walk in less than 2 months. I've had more than my fair share of pain and discomfort (not to mention the cost) but limb lengthening has been 100% worth it.
I'm glad you feel like it's still worth it after suffering through the most painful part! Good luck on your recovery!
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I haven't updated this in a while but I finished lengthening Friday. It took about a week longer than predicted because my bones started to consolidate early. I got about 76-77mm on my left and 79-80mm on my right (purposefully, because my left leg was naturally 4mm longer to begin with). I'm going home Friday in a few days. Because my bones seem to be consolidating quickly, I'm hoping I'll be able to walk in less than 2 months. I've had more than my fair share of pain and discomfort (not to mention the cost) but limb lengthening has been 100% worth it.
Dude! Your parents paid for it.... Yes, very jealous. Congrats on everything... You'll still be insecure?? What is your dream height? Is a second surgery something you'd consider?
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Hey Mb I have to ask are you the same person who made the post on Reddit r/short about his procedure?
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yes
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Update: It's been about 15 days I stopped lengthening on my left leg and 13 on my right. A little over 3 months since my surgery. My back was killing me the first day I got home from the constant use of stairs, but that went away pretty quickly. I'm much more flexible than I was last week, and that was a huge improvement over the week before. Last week I noticed that I'm able to take steps unaided. I have no intention of snapping my rods in half, so I've never taken more than 3 steps at a time, nor have I stood on one leg for more than a second. I'm 19, pretty light (like 125-130ish depending on how much I've eaten), and my bones began to consolidate in the last phase of my lengthening so I'm not too surprised by this. I'm getting pretty sick of crutches (haven't used the walker in over a month and didn't even take the wheelchair home with me) so hopefully my x-ray on the 16th will clear me to officially begin walking.
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I have to ask out of curiosity, but besides walking are you able to operate a vehicle in anyway? Keep us updated and good luck.
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Supposedly CLL patients are able to drive, but I have no intention of doing so for a while.
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My guess is that it would all come down to sensitivity of our legs and whether you can properly account how much pressure you can give in. The other one would be not having drastic knee-jerk like reactions randomly
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So contrary to what I said in my last post that I would wait for official clearance, I've been continuing to walk in the past 10 days. I've stopped using crutches entirely and I can safely and painlessly walk around my house. I've started taking normal showers (i.e. standing; without a shower-chair). My gait is still a little stiff but hopefully this'll go away over time with stretching and more walking. Before when I walked (as in 10 days ago) it felt as though I were carrying a large box as my back would tighten with each step, but this has gone away. I am able to walk up an entire flight of stairs without any assistance, though this does cause some pain and I normally use the railing. I have yet to try going down the stairs without the railing, however. My x-ray is on Monday, and I'm pretty confident as to what Paley's response will be.
And no, I've never heard of someone being able to start walking two weeks after finishing lengthening, but I'm certainly not complaining.
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Would you be willing to post pictures of your new proportions?
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Take it easy my man. I'm ecstatic you're managing so well but let's not push it lol. Eitherway good hear from ya.
Adding to what Taller said, can you at least inform us as to what your current true inseam is?
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congrats mb53 on your recovery. sounds like it's going really well! however, please take it easy until you have clearance from your doctor to fully weightbear. like you said, it's uncommon for anyone to start walking 2 weeks after finishing lengthening. you're so close to the end of your journey, no need to risk it now...
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I had the x-ray done today but apparently I won't get Paley's results back for about a week... lol. In the meantime, my walk is almost back to normal. The reason my gait was stiff was because (in addition to not walking for 3 months) I completely forgot about the iliotibial band stretch. After doing it a few times, my gait is much better.
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I had the x-ray done today but apparently I won't get Paley's results back for about a week... lol. In the meantime, my walk is almost back to normal. The reason my gait was stiff was because (in addition to not walking for 3 months) I completely forgot about the iliotibial band stretch. After doing it a few times, my gait is much better.
According to Precice 2's manufacturer's manual on the Precice 2, the patient can be walking after 3 out of the 4 cortices (i.e. walls or sides) of the femur is solidly healed. So you can sort of figure out the answer for yourself by looking at your x-ray and checking the 4 sides of your gap (front, left, right, back). If at least 3 of them are healed, you are full weight bearing according to Ellipse.
What's interesting is out of the 155 times that the Precice 1 was installed, it only broke 3 times. And it broke where the welds are that connected the nail together. The Precice 2 has no welds, and is reportedly 4 times as strong because of it. This might explain why you've been able to walk with the Precice 2 without much issues. And I have a feeling that Dr. Paley and Ellipse are very very conservative with their safety measures and don't let you walk until they're absolutely certain that you have very little chance of breaking their nail. I personally have a feeling that it's very difficult to break the nail, because I took a few baby steps recently even though I haven't fully consolidated, and I didn't have much issues. I'm not going to do it again, but I'm almost 99.9% certain that the Precice 2 is stronger than they lead us to believe for liability and safety reasons.
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in the recent paley study there was one instance of the precice 2 nail breaking out of 58. I guess the odds are really low and it's up to you if you feel walking a few weeks early is worth that risk, but I appreciate conservatism considering the additional surgery/money/time required to fix a broken nail
here's the exact text from the study:
"In our P2 group, there was 1 nail breakage during late consolidation (Fig. 7). The nail silently bent into varus and produced a noticeable bump on the lateral side of the thigh. The patient continued to walk without pain and complained only about a thigh bump. This patient had disregarded the weight-bearing restrictions that were reinforced in writing to him each time he sent a follow-up radiograph during the consolidation phase. He too had stopped using crutches without being released to do so."
here's a link to the study. there are pics of the xrays where you can see the broken nail and amount of consolidation
http://journals.lww.com/techortho/Fulltext/2015/09000/Stature_Lengthening_Using_the_PRECICE.6.aspx#
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Thanks for that study. It reaffirmed my theory that the welds no longer are the weakest link, and is only a weakness in Precice 1. Then in Precice 2, you see that the femur was broken too low during surgery for the one case where the nail broke. The femur should have been broken higher up to allow more bone to protect the new weak point, which is the 1 cm gap that connects the two rods together. Another patient while I was here also had his femur broken too low, and he had to stop 1 cm short of his goal of 8 cm or else he'd risk the same issue. I guess Paley became more cautious of the new weak point. Also the Precice 2 had fins at the end instead of being one circular piece. This made the end even more weak, as only one fin had to be broken out of the four to cause a total failure of the rod. The precice 2.1 released in Dec 2014 had fixed this issue by replacing the fin design with more complete circular design. From the link you posted: "Breakages of the crown and fins have been identified in some cases including this patient (Fig. 9). To strengthen the nail and avoid crown failures, Ellipse Technologies released the P2.1 in December 2014, which has a modified keying feature without “thru-slots” or tack welds." Also in my x-ray, I see the breakage point of my femur is higher up, so there is at least 1-2 cm of bone surrounding that weak point. I don't know what the new weak point is now, since there's no Precice 2.1 breakage yet. And I don't want to be the first one to find out, so I'm going to wait until I get the OK before I walk without support again. But looks to me that Precice 2.1 is harder to break, especially if you have bone surrounding the weak point. The paper recommends 3 cm of bone surrounding the weak point.
Something interesting to read in that same paper: "At our center we have seen patients from all over the world who arrive with disabling complications after failed SSL. These include: equinus deformity due to Achilles tendon contracture (ballerina feet); fascia lata contractures with hip flexion contracture and hyperlordosis (duckass); partial or complete failed regenerate bone formation, including fixators that cannot be removed due to failed healing; bent and broken hardware; malunions and nonunions of the tibia, fibula, and femur; proximal migration of the fibula; and many more. We must remind ourselves that these patients start functionally at 100%. The treatment goal is to end up with the same 100% functional level. Anything less than this is neither a good outcome nor a reasonable tradeoff for a few centimeters. Disablement is too often an outcome of this surgery when performed by unqualified or inexperienced surgeons, which leaves patients with debilitating conditions and gives this surgery a bad reputation.
A few years ago the senior author (D.P.) saw 7 patients in the course of 2 years who were disabled by complications from bilateral tibial lengthening. All of these had been treated by a single surgeon. This resulted in 7 separate malpractice lawsuits and ultimately the loss of that surgeon’s medical license. Such cases give SSL and undeserved bad reputation."
Stuff like this made me glad that I went to Paley.
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I haven't posted in a while (obviously), but I decided to check out the site today and saw that a lot of people were having complications. I must be fortunate in that regard, since my recovery is going perfectly, and pain is nonexistent. I stopped taking painkillers months ago. I'm walking fine, and as I'm slightly weaker in one leg than the other right now, nobody's questioned my story that I tore my ACL. I can jog and walk on my hands again, though I still can't run, and working out/sprinting is out of the question (at least for now). My legs are almost fully healed, as I've had some pretty bad falls (some while sober, some while drunk) but I recover after about a day.
Contrary to some of my fellow patients who are regretting doing the procedure, this has gone better than I could have ever have hoped for. I'm no longer ashamed of my size when I interact with people. Yes, at 5'7" I'm still short, and I'm still quite aware that most people are taller than me, but I just don't care anymore. Before the surgery, socializing would drain the life out of me, but now it's the exact opposite - I enjoy it. I've told so many people that I tore my ACL that I've started to believe it, and I can go for days without even remembering that I spent half a year doing such an insane procedure. Sometimes the scars (which are still in the process of healing so they look pretty bad) don't even bring back my memories. I didn't repress anything, I'm fully aware of what I did, but I'm able to forget about LL and enjoy myself.
My experience sadly seems to be an outlier, but deciding to get LL was probably the greatest decision of my life.
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how is yoru recovery going?
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I thought my post kind of made that clear...
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so you cant run, and have to tell people you tore an acl... which means that you dont walk 100% normally
but you're perfect
good for you
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I thought my post kind of made that clear...
Oops... I missed that post haha
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so you cant run, and have to tell people you tore an acl... which means that you dont walk 100% normally
but you're perfect
good for you
I tell people I tore my ACL because I needed to explain why I took a semester off from school. And I can't run because I'm still in recovery. But kudos on the passive aggressive response.
Oops... I missed that post haha
It's fine, haha
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In what sense does your experience is an outliner?
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It's an outlier in that other people seem to be having much worse recoveries, as I've seen from the other threads.
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Maybe they are having the same recovery as you, only you are less of a complaining person...
Is your gain totally normal? Dont you feel stiff in any parts of your body?
Your young age could also be a part of your fast recovery
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you can't run because you can't run
maybe you will, maybe you won't
tbike.... I think that statement is accurate... I complain a lot for example, so people assume I'm crippled. I was doing full squats today, maybe 20
I can't accept not being 100% though
And my left leg is atrocious. Unless someone recovers to 100%, the success is a failure in my opinion, which is why I'm against this surgery
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you can't run because you can't run
maybe you will, maybe you won't
tbike.... I think that statement is accurate... I complain a lot for example, so people assume I'm crippled. I was doing full squats today, maybe 20
I can't accept not being 100% though
And my left leg is atrocious. Unless someone recovers to 100%, the success is a failure in my opinion, which is why I'm against this surgery
I wasnt talking about you when I said "complaining". You got butchered and have every right to complain. You were lied by your surgeon (who also doesnt know how to do a proper ATL) and got abandoned by your original surgeon.
About 100% recovery, I am willing to accept a 90% one in terms of athletics
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no offense taken tbike
90% is okay, though some people might consider me at 90%. I can walk, can do squats, can go upstairs, etc
my left leg though is awful
my main issue is the following. 99% of even the good diaries aren't good based on their now reality.. What I mean is, let's say mb53 didn't get better after today. There's no way that he would consider his recovery great,since he can't run.
His perfect recovery is predicated on his future recovery continuing at the same rate, which is an unknown
we almost never get a diary that says " guys, i'm fully recovered, i'm done, 100%, can run, etc"
This is concerning to me, especially since I'd like to say one day that i'm fully recovered. We almost never see this though
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no offense taken tbike
90% is okay, though some people might consider me at 90%. I can walk, can do squats, can go upstairs, etc
my left leg though is awful
my main issue is the following. 99% of even the good diaries aren't good based on their now reality.. What I mean is, let's say mb53 didn't get better after today. There's no way that he would consider his recovery great,since he can't run.
His perfect recovery is predicated on his future recovery continuing at the same rate, which is an unknown
we almost never get a diary that says " guys, i'm fully recovered, i'm done, 100%, can run, etc"
This is concerning to me, especially since I'd like to say one day that i'm fully recovered. We almost never see this though
Can you send me a video of you doing squats? Or in general how you walk?
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Maybe they are having the same recovery as you, only you are less of a complaining person...
Is your gain totally normal? Dont you feel stiff in any parts of your body?
Your young age could also be a part of your fast recovery
MB's recovery is better than most people. It might have to do with the fact that he's a teenager and teens recover much faster. I've noticed from my time at Paley's that most of the younger people (under 20) recovered well and did not have pain, while the late 20's and above group were having a lot of pain and issues. For this reason, I'm actually very worried about Iamready's recovery, because he's actually older than me by a few years. If he doesn't go the full 8 cm in femurs, though, he might recover well.
But don't say that his recovery is the same as others. One of the other teenage patients I knew stopped taking pain meds WHILE lengthening. He said that he felt no pain. Meanwhile everyone else was popping pain meds just to be able to sleep. So everyone has a different recovery. And age does seem like the major factor.
I am in the same boat as crimsontide and don't recommend this surgery. It's a gamble. You could have a great recovery or you can have a bad one. If the bad recovery causes permanent side effects, then it'll lower your quality of life significantly, because walking/running is something you do everyday. If it hurts when you do it, you're screwed. If you can't even run ever again, then a lot of things in life will suck, such as sports, or running away from things, or chasing a train or someone.
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MB's recovery is better than most people. It might have to do with the fact that he's a teenager and teens recover much faster. I've noticed from my time at Paley's that most of the younger people (under 20) recovered well and did not have pain, while the late 20's and above group were having a lot of pain and issues. For this reason, I'm actually very worried about Iamready's recovery, because he's actually older than me by a few years. If he doesn't go the full 8 cm in femurs, though, he might recover well.
But don't say that his recovery is the same as others. One of the other teenage patients I knew stopped taking pain meds WHILE lengthening. He said that he felt no pain. Meanwhile everyone else was popping pain meds just to be able to sleep. So everyone has a different recovery. And age does seem like the major factor.
I am in the same boat as crimsontide and don't recommend this surgery. It's a gamble. You could have a great recovery or you can have a bad one. If the bad recovery causes permanent side effects, then it'll lower your quality of life significantly, because walking/running is something you do everyday. If it hurts when you do it, you're screwed. If you can't even run ever again, then a lot of things in life will suck, such as sports, or running away from things, or chasing a train or someone.
How old are you?
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How old are you?
Late 20s.
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Late 20s.
So should I worry at being 25-26 years old? Idont know.... According to medical literature, being below 35 is still considered "young"
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im 24, i will be doing at 25 yrs old in beijing 4.5 cm to make me 172 cm, should i be worry?
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no offense taken tbike
90% is okay, though some people might consider me at 90%. I can walk, can do squats, can go upstairs, etc
my left leg though is awful
my main issue is the following. 99% of even the good diaries aren't good based on their now reality.. What I mean is, let's say mb53 didn't get better after today. There's no way that he would consider his recovery great,since he can't run.
His perfect recovery is predicated on his future recovery continuing at the same rate, which is an unknown
we almost never get a diary that says " guys, i'm fully recovered, i'm done, 100%, can run, etc"
This is concerning to me, especially since I'd like to say one day that i'm fully recovered. We almost never see this though
I know of ShyShy, OldieButGoldie, AndrewShizzles (from the old forum), ChrisIsaak, Houdini (from the old forum), femurs2014 (from the old forum) to name a few, (who put up videos) that have said they have recovered fine.
but I guess it also depends on what your expectations of a full recovery are.
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Vitruvius had quadrilateral lengthening with Paley at age 52 (https://goo.gl/e5BHAv) and recovered very, very well (https://goo.gl/GT6KkV): "Before the operation I raced in triathlons, mountain biked, and I was an avid skier. I’m now back to riding, swimming, trail running, weight lifting with my legs"
I wrote in this post (http://www.limblengtheningforum.com/index.php?topic=2165.msg81987#msg81987) why I think his recovery went better than expected.
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http://www. /index.php/topic,7913.msg106305.html#msg106305
wow