Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Discussions => Topic started by: 5cm Stryde on January 08, 2020, 04:41:00 AM
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Hi all,
I need the help of LL warrior as even after a lot of queries and reading, the recovery timeline is still not clear.
I am planning to do femur Stryde with a goal of 5cm max in couple of months (starting height 5.7 or 170cm, 30 years, wanted the surgery for years but was never really satisfied with outcome as recovery is really important to me (and also didn't have the money before for internal).
According to Doctor Paley and team, with their own words, 5cm is fairly easy to achieve. I will need approximal 60 days to complete and I will be walking the entire time. It will take about the same amount of time to consolidate so 4 months and I will be completly normal. And 6months before to come back to all sports.
The way I understand it is that right after the lengthening period I should be walking fine and after 2more months, everything should be completly normal (walking as much I want, doing stairs without issue... )
By reading this, it seems quite easy and I would do it directly. But I am very skeptikal by nature and even more regarding broken two healthy legs.
Thus, I read about all the internal diaries (Stryde, but also G nail and Betznail as there are also weight bearing so should be the same recovery timeline)
And it seems apart of a few rare diaries (Movie for instance), the experience of the majority of patients is way more long and difficult (just a few example for instance, if I am not mistaken :
- Nestor : really difficile for him to walk during the process.
- Inchesmatter (still not walking properly 3.5months after lengthen
- Wangchoan : had to wait for 6month to walk easily (5cm femurl
- bgreenee : even after 2month post lengthening 2.5cm, still limitation for walking completly normal.
And there are many more and these one are without complications. And I am still waiting for anyone going back to sports just after 6months (a small jump is not sports !) .
Thus, it seems Paley's team is just showing an almost fictionnal timeline but not the one followed by the vast majority.
As I have a very active and busy life, if after 4 months, I could not walk as much I want for travelling (not small steps one even floor like the one in most diaries) or just cannot carry heavy groceries stores and going down stairs like a normal adult, I would not be satisfied with surgery. Same if I have to wait more than 1 years before playing sports with my friends as it seems to be the case (and not 6 months like Doctor is saying)
So I am asking to all the vets : is Paley's team "lying" by not presenting the reality followed for most patients ? (ofc same for other doctors who are presenting LL like an easy thing)
Or maybe I don't have all the information and patients on this forum have really slow recovery but the vast majority (not having a diary) have a recovery like the one of Paley statement ?
Thank you for your help as I wish to know the reality before going for a major procedure and I am not really confident to continue if a Doctor is just presenting a fictionnal timeline but not the true one followed by the majority.
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Yes, many docs oversimplify the process and present best case outcomes. What you read in diaries is more realistic.
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One factor which is often omitted in diaries that can give a rule of thumb is:
1. Initial femur lenght.
2. Femur gain increase in CM and %.
The latter the longer the harder the recovery.
If Im 160 cm with short femurs and you are 170 with long femurs.
I will have a hard time for 5 cm and you won’t.
Best to ask these metrics with Paley or any other surgeon, perhaps he gave it to you based on his experience of you bone lenght and goal.
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paley is very genuine guy he wont lie but every one has different body bones structure. we cant blame him for that.
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Hi all!
Thanks for your reply so far and input, it is really helpful!
To be noted : I have nothing against Paley (I am considering him) but more against how the procedure is sold : for me, it seems Doctors are taking advantage of desperate people who want to grow taller and they don't show the reality.
Just imagine, if you do some work in your home and you pay an employee more than 100K to perform it, I can tell you, you will be very mad if the guy deliver the product with a 6 months delay!! It seems so obvious! Why it is not obvious for CLL market ??
And for Stryde, it is advertised that you can do sports at 6 month mark for even 8cm (it is written black and white in the brochure). And as I said, the vast majority of patients are far from doing sports at 6 months mark (once again, a small jump is not sports) but more after 1 year (some of them even after 1 year cannot).
So if the vast majority doesn't have the result expected, it is not linked to bones structures or whatever. It is just Doctors are selling for more than 100K, a product which doesn't correspond to the reality.
Thus, we have all reasons to blame them for that and I truly don't understand why people are not doing so!
The only reason I can think of is that the vast majority are so desperate to grow taller so they are blind. And even top Doctors like Paley are taking advantage of this specific market. It is really frightening...
Once again, I hope I am mistaken and LL warrior will prove me wrong because I also want to grow taller. But so far, how can I trust Doctors for this process regarding long term outcome or complications rate if even at the beginning they don't tell the truth ?
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if u broke both your leg bones - tibia and finula - in sport you simply would not expect to be playing again within 6 months - if you do limb lengthening then this is a surgical procedure and then lenthening - u need to give yourself a year to adequately recover - it takes three years before tge bone, ligaments and tendons fully recover - it has got nothing to do with any doctor's claims - u need to research the medical findings that are documented and published rather than site diaries that are at best inaccurate and at worst nonsense :)
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sent from my phone - so forgive the odd spelling!!
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Paley writes in his FAQ's that his is the "SAFEST and most RELIABLE place to get CLL"
That could be true but there is no way to know that for sure. So it's not so correct to write something like that. The world is large and as time passes, there can always be newer centers where high quality CLL is offered. Unless he has a universal dictionary of all CLL surgeons in the world and how much their success rate is.
Don't get me wrong. Paley center could still very well be the safest and most reliable place to get CLL.
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I recently completed 8 CM femurs (Stryde) with Paley.
It's true that most patients make it to 5 cm relatively easy. Once you cross the 5 cm or 6 cm mark is where many quit due to tightness.
Once you are done with lengthening, yes technically you will be "walking" but your mobility in all practical scenarios will be very limited. For example, I'm 3 weeks out from last distraction, and I can walk up to about a half a mile at which point I'm pretty fatigued. So I'm still dependent on my cane beyond that. Furthermore my walk is slow, old people and children pass me up on the side walk. Getting up from a seated position takes time. With stairs, I need to use the handrail and go slow. I can "walk" but am far from normal.
If you live an active and busy lifestyle your timeline for "normal" in a practical sense should be at least 6 months from the operation if you are planning on doing 5 cm. Results may vary.
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Many thanks The Alchemist!
It is exactly the kind of feedback I am expecting!
Indeed, for me, most of the week end I am visiting new places or cities, walking all day with friends...I guess everyone is different no judgment but I definitively don't have a good day if I just go to work and go home to rest...
So i really appreciate your comments. It really put things in perspective because when you read that someone is back to normal and you see a video with a few steps, I wanted to believe the person was really back to normal. But as you said, being able to walk only a few miles at minimum speed before the need to rest is far from being normal for an healthy and active young adult as we all are in this forum...
So I believe the definition of being back to normal according to the Doctors is really not the same than a young adult may have. And probably even more different regarding sports....And it seems they are kind of playing with this definition and for me I think it is not fair (it would be fair if you were crippled to begin with but it is not the case here)
I hope some other LL warriors would also give their feedback because I really don't want to stay at my actual height but it seems for the moment the sacrifice is not worth it for me...
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why are you questioning doctor's when you have no medical knowledge - i have done limb lengthening - 99% of people on this sit have not & will not - & then blame misinformation - the research & evidence is there for all to see - either do it or stop nonsense talk!! - even those 1% who proceed still think they know better than orthopaedic surgeons!! - give me strength!!
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Hi th,
Thank you for your comments!
But no need to be agressive. I never stated I know better than an orthopadedic surgeon! On the contrary, that's why I am asking for help from people like you, with the experience of the surgery.
I met two CLL doctors so far and indeed there is a mismatch between the information they gave to me and the experiences I read or patients I talked to.
I am not sure your comment of "either do it or stop nonsense talk" is productive : it is my two legs, so I consider I can ask the question I need to ask (maybe it was not your case but everyone is different) And yes, for the moment there is a mismatch between doctors and experience of patients so I need to ask and hopefully it can also interest some other futur LL patients.
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it is not being agressive when speaking the truth - the fact you are looking to break your legs based on this site confirms - 100% - that you will never do it - you need to do your medical researvh and WANT to do it - otherwise, it is indeednnonsense talk
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the title of this thread - 'dr paley is he lying' says it all - govand ask him!!!
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Th,
On the contrary, I am really informed. I also read all the studies I could find online (mainly on the following website : https://www.ncbi.nlm.nih.gov/). Even if there is not a real studies with a timeline neither that one with long term effect for femur, the different studies show a real and complex process which is in contradiction with the information given by CLL doctors. Thus, I created this topic as it seems Doctors don't give the truth about the process. If you have more information, could you provide ?
In fact, to be honest, it also seems people who has done CLL are the one who read the less (just blind and desperate) .Because the more you read, the less you want to do it.
PS : I agree, my title is a bit too much, but it was on purpose to get answers :). FYI I did ask him and other doctors but yes I got a mismatch with their answers and experience of patients so I decided to create the topic.
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if u really were going to do it - to attempt to cure height neurosis, mental health etc - then you would simply go ahead and proceed accordingly - it really isn't that bad re pain, safety etc - the hardest thing is the doubt as u are about to go into surgery and the days after - but if u REALLY want to do it (for right or wrong) you would do so
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just check ilizarov method in russia - you'll find all the medical info - it is performed on children for gods sake - case closed
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it is not the case that people go into this surgery blind and desperate - again what evidence do you have fof this??
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In fact, I am not afraid of pain at all (afraid of safety yes : risk of fat embolism is about 4% so really high).
But there is one thing which is really not shown by doctors (and rarely by diaries) is the recovery phase : and it seems so far almost everyone has to walk like grandpa months after lengthening (sometimes still after 1 year). And it is definitively not mentionned by Doctors. So it seems to me that it was relevant to start a topic adressing this subject. So I think you missed my point.
Otherwise, what's your point regarding External fixator and children ? You do know it is done for medical reason and not cosmetic reason ? So the goal is not at all the same (for medical reason, it is done to improve the physical situation of a patient so even if a patient cannot run after, he will still be happy).
And yes, when I read previous patient who said : "go for it, everything will be fine", it doesn't show a real picture so it seems not really wise.
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paley is very genuine guy he wont lie but every one has different body bones structure. we cant blame him for that.
Lol you're the type of guy that's easy to sell anything to, gullible and will even defend the snâke oil you just bought.
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the point about external fixator on children is that the procedure is safe - with regards to 'missing your point' - it is not posdible for someone who has gone through limb lengtheing to miss ANY point made by someone making 'claims' on a website who will never proceed with the procefure - this thread is nonsensical because all the info/evidence is already out there - what's the point in trying to score points on a LL website - when you will never do it?
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Hey there,
Your concerns are absolutely legitimate. In fact Paley's salesman tactics that I have read about really turned me off from seeking him as my surgeon. I agree with you 100% that surgeons inflate recovery periods for this procedure. Not sure if you read my diary but I am almost 7 months post op with dr R and I got 8cm with femurs. I am still wobbling when I walk. Granted I haven't been doing physical therapy after stopping lengthening due to lack of time but this surgery is no joke in terms of recovery. If what you said earlier is true, this surgery due to the acccompanying recovery period is really not for you at this time. I understand tge point th is attempting to make and partially agree with him as well. But what th doesn't realize is that we all start this process from somewhere, ask questions and let this surgery brew in our minds. Th you are correct that the poster is unlikely to have this surgery done at this time but it never hurts to ask and collect info. I was on this forum for many yrs reading and pming members to gather info. Yes I wasn't ready when I first came across this site and read about the pain the suffering and overall demands of this surgery, but in due time I realized there was no other option for me. The op may be in the beginning of this process so in my opinion it isn't not fair for you to bash his comments. Anyway op, yes these doctors do give a rosy picture of the recovery but it is far from reality for most patients (dr R did give me rosy timelines as well). Please plan at least 1 yr for decent recovery (though again it is very individual). However better to stay on a conservative side. Good luck to you op and for everyone else reading, please remain civil in discussing this procedure Because everyone's journey starts from somewhere.
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Thank you Tiggy for your reply! And yes I read your diary as well, really great and I am impressed because you were always motivated!
Indeed if the vast majority of recovery is like Movie (as advertised by Doctor), I would do it directly.
If the vast majority of recovery is like the other diaries, I would not.
So I just have two questions before to move forward. I really hope more LL Warrior (femur, weight bearing nail) will answer :
1. My point of creating the Topic was to know if the LL warrior who have a long recovery knows, after talking to their Doctors or other co patient, if they were the norm or the exception. That's why I am asking to LL warrior (femur, weight bearing nail) who met a lot of patient I assume (and discussed a lot with PT and Doctors) if the timeline shown by Doctors is the norm or not ?
2. Otherwise, after seiing videos of Movie, I would be really interested to hear about the other LL warriors with weight bearing nails on this forum.
Indeed, you have the same kind of nail so you know it is safe to walk, do light sports..., so what does prevent you for the same recovery ? (I am talking about normal case, not case with problem like nerve injury, non union...).
After reading all diaries and asked different Doctors, it seems it is only linked to Strenght and Flexibily. And Strenght and Flexibily you can improve by working out! So when I asked to different Doctors (more than 5), about long recovery of patient, they just told me it is because they don't workout enough. They told me if you do enough workout, you will be doing sports before the 6 month mark like Movie.
Do you feel it is fair ? Is it just because you are lazy or no time ? (no offence but it is basically what Doctors are saying).
Or does the Doctors didn't tell me the truth and there is something else who prevent you from a recovery like Movie ?
Thank you!
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the simple point i have made and stand by is that the bone is broken, lengthened and then heals - how anyone contemplates this surgery by gaining knowledge on this site is beyond me - most people here have some kind of personality disorder and are looking to break their legs in order to resolve this - if anyone ever did lengthening one would be aware of the characters u'd meet in the clinics ie those who constantly complain, fail to commit to the advice of doctors or complete excercises, stay in bed all day, get lazy etc - i am trying to help you by emphasising NOT to rely on this site!! - i rarely access this site but u should check my posts around 4 years ago - where 2 patients were ordered to stop lengthening by their doctor and simply went to the hardware store, bought a spanner and lengthened 11cm on tibias alone!! - they then expected the doctor to solve their crippledness!!
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Thank you Tiggy for your reply! And yes I read your diary as well, really great and I am impressed because you were always motivated!
Indeed if the vast majority of recovery is like Movie (as advertised by Doctor), I would do it directly.
If the vast majority of recovery is like the other diaries, I would not.
So I just have two questions before to move forward. I really hope more LL Warrior (femur, weight bearing nail) will answer :
1. My point of creating the Topic was to know if the LL warrior who have a long recovery knows, after talking to their Doctors or other co patient, if they were the norm or the exception. That's why I am asking to LL warrior (femur, weight bearing nail) who met a lot of patient I assume (and discussed a lot with PT and Doctors) if the timeline shown by Doctors is the norm or not ?
2. Otherwise, after seiing videos of Movie, I would be really interested to hear about the other LL warriors with weight bearing nails on this forum.
Indeed, you have the same kind of nail so you know it is safe to walk, do light sports..., so what does prevent you for the same recovery ? (I am talking about normal case, not case with problem like nerve injury, non union...).
After reading all diaries and asked different Doctors, it seems it is only linked to Strenght and Flexibily. And Strenght and Flexibily you can improve by working out! So when I asked to different Doctors (more than 5), about long recovery of patient, they just told me it is because they don't workout enough. They told me if you do enough workout, you will be doing sports before the 6 month mark like Movie.
Do you feel it is fair ? Is it just because you are lazy or no time ? (no offence but it is basically what Doctors are saying).
Or does the Doctors didn't tell me the truth and there is something else who prevent you from a recovery like Movie ?
Thank you!
To answer your first question, if your recovery takes long your surgeon is not going to tell you that you are the norm if prior to surgery he was giving you rosy projections. Obviously you will be told that you are an exception. I personally haven't talked to any dr other than dr R because we clicked during my consult and I felt no need to consult with other drs. As to speaking to other patients, no 2 experiences are the same. I was told I'll be close to normal walking by around nov. I was able to walk decent but I still wobble. R told me this is because my right leg is tighter and perhaps if I spent more time stretching and doing PT post lengthening I may have been close to normal. I can't say what could have been.
This leads me to your 2nd question: I haven't been stretching or doing PT post lengthening because I simply didn't have the time. I'm in school now so it's tough to find the time given that I'm always busy either with classes or hw. However this semester I'm planning to hit the gym so hopefully I regain my strength quicker. If you read my diary you can see I'm not a lazy person in general because a lazy lengthener cannot reach 8cm without putting in all the work unless of course he/she is incredibly flexible to begin with. I personally haven't read any diaries of reaching 8cm without putting in the effort. Those who are lazy tend to quit around 6cm.
Point is no dr will tell you for sure how long your recovery will take and you can't predict how motivated you will be to put in the work to reach the 8cm mark. Even if you put in the work things may happen beyond your control that may elongate the process. You said you read my diary so you know my bone was filling in slow so what should've taken 3 months of lengthening ended up stretching to nov. Given what you've stated I believe this surgery may not be the correct path for you at this time. Any person going for it must be prepared and must be content with this potentially prolonging a long time. If you feel you will be disappointed and unhappy if the process takes longer than whatever number you have in mind, that's a sign that you are simply not ready yet. Just my opinion, but I hope it helped you somewhat. Good luck
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when will anyone get this basic message - the bone is broken - it is totally irrelvant what doctors, patients or posters say - the bone will heal in it's own time - helped by nutrition etc or maybe not as each case differs - i repeat such a basic - the bone is broken so it will heal - irrelevant of any discussion on this site
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lies or no lies
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the simple point i have made and stand by is that the bone is broken, lengthened and then heals - how anyone contemplates this surgery by gaining knowledge on this site is beyond me - most people here have some kind of personality disorder and are looking to break their legs in order to resolve this - if anyone ever did lengthening one would be aware of the characters u'd meet in the clinics ie those who constantly complain, fail to commit to the advice of doctors or complete excercises, stay in bed all day, get lazy etc - i am trying to help you by emphasising NOT to rely on this site!! - i rarely access this site but u should check my posts around 4 years ago - where 2 patients were ordered to stop lengthening by their doctor and simply went to the hardware store, bought a spanner and lengthened 11cm on tibias alone!! - they then expected the doctor to solve their crippledness!!
This is the last thing I'll say to you personally because I see that you have a very argumentative personality and I'm simply not going to contribute to that in any manner. I find it difficult to follow the point you are making in your last post. I did contemplate surgery by relying on this site exclusively over the span of 6 or so yrs. So whether it is beyond you or not is irrelevant. I'm happy with my decision and the surgery. It is life changing for myself and so many others on this forum. The personality disorder insult that you found appropriate to vomit all over this site is also uncalled for. There are extremely accomplished people on this site, myself included who have suffered from height insecurities for yrs. it is simply an insecurity. Most people in the world have some type of an insecurity about themselves that they wish to change, so characterizing them as having personality disorders is quite frankly one of the most ignorant comments I've read and it truly displays your lack of logical reasoning skills. Either way if you don't agree with a fellow member you can politely state your opinion and move on instead of spreading hearsays, insults and bombarding their thread with nonsense. Anyway good luck to you in whatever agenda you have on this forum. Hopefully you will be more decent in your choice of words in the future. Take care.
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if u think the majority of people who have have this surgery do not have a personslity disorder is really up to you - breaking ur bones is not an insecurity - it is a form of mental illness - as in the 11cm example i have submitted but which j fail to comment on - re hearsay that's exactly what i have posted about!! - i have encouraged scientific and medical research!! - not launching adhominen sttacks!! - is paley lying?? proves the point - pure nonsense
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Thanks a lot Tiggy for your answer and I wish you the best for the end of your recovery!!
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tell paley to stop
lying!! :D ;D ;)
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Th,
You have an issue man lol
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i do indeed - i have no desire to listen to nonsense - man :)
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There is nothing wrong with asking questions, that's how people learn and discover new information that they might not of come across or thought of before. That being said, I think Paley is being optimistic, rather than lying to you. If you feel uneasy with a doctor, just choose someone else. Alot of people feel safe going to Paley and he has a good reputation in LL with other doctors and had good outcomes with countless patients already. With Stryde, you can already walk during first week of surgery, but you will walk funny, by no means normal or natural.
LL is a journey, not a sprint. After the first surgery, there is also a removal and recovery from that as well. You will encounter all sorts of pains and even things others did not because your doctors will be different, your individual bodies' response is also different so healing time won't exactly match another person's.
If a person is the type to have neurosis even after the research they've done, then just forget the surgery because these types will over-focus and everything will bother them. To them, something must be wrong and they will be unhappy all the way and after about their surgery regardless. It is about the psyche of a person going into surgery, you have to be mentally prepared and understand the risks and the trade-offs.
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If a doctor does his best to prevent misalignment and rotational deviation from the original during surgery, you have a high chance of recovering and back to 90-95% normal given time and physical rehabilitation. The rough ballpark from other ppl's collective experience and average is 3 years from time of surgery(and including the 1 year removal in this) to completely heal where you don't notice the aches and pains and return to what is considered "normal."
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I recently completed 8 CM femurs (Stryde) with Paley.
It's true that most patients make it to 5 cm relatively easy. Once you cross the 5 cm or 6 cm mark is where many quit due to tightness.
Once you are done with lengthening, yes technically you will be "walking" but your mobility in all practical scenarios will be very limited. For example, I'm 3 weeks out from last distraction, and I can walk up to about a half a mile at which point I'm pretty fatigued. So I'm still dependent on my cane beyond that. Furthermore my walk is slow, old people and children pass me up on the side walk. Getting up from a seated position takes time. With stairs, I need to use the handrail and go slow. I can "walk" but am far from normal.
If you live an active and busy lifestyle your timeline for "normal" in a practical sense should be at least 6 months from the operation if you are planning on doing 5 cm. Results may vary.
Hi, kind of off topic but you gained 8 cm in just your femurs? How flexible were you pre-op? Were you given a timeline for full recovery? Also, how much did Stryde cost with Paley ?
Hope you find the time to answer my questions. Thank you
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Hi, kind of off topic but you gained 8 cm in just your femurs? How flexible were you pre-op? Were you given a timeline for full recovery? Also, how much did Stryde cost with Paley ?
Hope you find the time to answer my questions. Thank you
I wrote a diary in this forum that covers all of your questions. Feel free to check that out.
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Although my recovery has been great, I can't by any means play any sports right now even If I wanted to ... I can't even jog lightly for more than 20 seconds, it still hurts too much and I can feel I don't have enough strength and flexibility for that yet ... I'm building up to it with Squats and leg workouts and stretching but as of now 5 Months and 2 weeks post op with 8CM gain I can not play sports ... so IDK how my doctor is advertising me (because I told him I'd rather not be advertised, only want people from the forum to see my own stuff I post) but 6 months for full sports even at 5 CMs is false in my opinion.
but with that said this thread is kind of pointless bro, If you've read diaries and know the actual timeline of recovery then why ask if Paley is a liar? lol it's like what's known doesn't have to be asked, all the doctors give you the optimistic timelines... I knew I wasn't gonna be good as pre surgery in 6 months, I'd be happy if I'm 90% close to that after a year to be honest. it's a trade off so that's something for you to consider and think about by yourself. Good luck on your decision
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Which rod did you have, Movie? Stryde?
With the Precice 2.2, IIRC it was about 2 months post-consolidation before they advised I attempt jogging/running/.etc. I took three months to lengthen, two to consolidate, so that would have been about seven months post-op. However, I was not flexible and wanted to go past 5cm.
If you were to say lengthen two months (5cm) and do two months consolidation and then wait another two months, the total time would be 6 months. But this is a best-case scenario, and I thought Paley was clear about that.