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.
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 ?
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...
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.
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.
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.
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!
Thanks a lot Tiggy for your answer and I wish you the best for the end of your recovery!!
Thanks a lot Tiggy for your answer and I wish you the best for the end of your recovery!!
Th,
You have an issue man lol
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