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.
Yes, many docs oversimplify the process and present best case outcomes. What you read in diaries is more realistic.
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.
paley is very genuine guy he wont lie but every one has different body bones structure. we cant blame him for that.
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 ?
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 
sent from my phone - so forgive the odd spelling!!
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.
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.
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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