Limb Lengthening Forum
Limb Lengthening Surgery => Information About Limb Lengthening => Topic started by: Thatdude950 on January 05, 2016, 11:19:16 AM
-
A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.
Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)
Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Yellowspike - Continued height neurosis, looking at further surgery
prince2 - "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.
OldieButGoldie - Unhappy with post LL functionality. Updated: I saw a post by OldiebutGoodie (see reply #99 in OldieButGoldie's Patient's Experience Topic) - he wasn't happy with my assessment. He didn't think the surgery was worth it, but had no complications and doesn't consider it a poor outcome
Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Cooper - "Serious complications, corrective surgery(s) required, 100k+ in additional costs.
musicmaker - "multiple corrective surgeries required"
BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union
Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.
Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
andrewshizzles - He's an interesting one. He's able to run and move around OK. He runs a 30 minute 5k which is very very average but not awful, can shoot hoops OK etc. But he had a serious complication - his nail broke post recovery, his leg snapped in half and he had to fly half way around the world for emergency surgery.
Edited: For Thatdude950 to include updates/additions to original post (May 2016)
-
A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.
Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
OldieButGoodie - Unhappy with post LL functionality.
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Yellowspike - Continued height neurosis, looking at further surgery
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.
Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
Interesting.. Are you able to post the amount lengthened and the portion lengthened for each person? That would definitely make it statistically more interesting.
-
Also consider the surgeon in question, and you're missing some positive outcomes from people who just did AMA's instead of writing a diary.
-
Thank god I'm not even there. Because I just was busy/got bored updating it. Probably will post an aftermath at some point. Maybe
-
Also consider the surgeon in question, and you're missing some positive outcomes from people who just did AMA's instead of writing a diary.
Second this.
-
Alot of people who lost their athletic ability or had weaker muscles etc went past 6 centimetres in the tibia.
-
Good list! But I agree that it would be cool if the list included the amount lengthened. Many of the "poor outcomes" were by people who lengthened 9 or 10 cm in one sector (mostly external tibiae), which is a receipt for disaster. As many doctors stated, a loss of functionality is not surprising for such cases.
Also, I would list as "poor outcomes" only those cases which resulted in some kind of physical problem, not psychological issues like regrets or height neurosis not solved.
-
The people who say they lost too much athleticism may get it back eventually. Even after being fully consolidated and having my internal nails removed, it took about a year for me to get to 90%.
-
I was wondering where you were Thatdude950. Funny that a guy who's anti-LL would provide such a valuable thread; so I thank you for this.
-
Posted this before and here it is again regarding tibia lengthening.
Dr Donghoon Lee who has followed up with over 400 CLL patients had this to say
From Walk6 diary
"I personally asked Dr. Lee what he thought about this (lengthening past 6 cm) and he has told me that from his experience in talking to former lengthening patients (2-3 years post recovery) those that only lengthened 5 cm recovered fully and their previous athleticism returned close to 100% to pre-LL levels. On the other hand, those who chose to lengthen between 6 and 7 centimeters recovered 100% in performing daily functions (walking, light jogging, etc), BUT only recovered about 60-70% of their pre-LL athleticism when engaging in serious sports/strenuous activities (full sprinting, jumping, basketball, rugby,etc..). Additionally, those that lengthened beyond 7 cm saw an ever greater decline in their previous athletic abilities.
In short, those who lengthen beyond 5 cm will not be able to recover all of their pre-LL athletic abilities because their muscles, nerves, tendons will be stretched well beyond their natural limits and will be permanently damaged. He used the rubber band analogy and Dr. Lee believes strongly in this. Once a rubber band (muscle) is stretched beyond its natural limit, even if its by only half a centimeter, then it will begin to tear and will forever lose its previous elasticity. The muscle's natural limit seems to be at 5 cm for many patients, though it can be higher or lower depending on the patient's initial tibia/femur length."
-
Although there's plenty of examples of patients needing corrective surgery, the most common negative theme is poor athletic recovery. If a patient genuinely does not care about being fit & mobile, & is happy with no activity outside of walking/jogging/basic movement, a number of diaries could be placed in the "good" category. Walk6, Oldiebutgoodie, dryani, bodybuilder ... they (I think) had had no complications, and for some this would be acceptable. (To me though, this kind of trade off is totally unacceptable...)
Also, as mentioned, some had no complications but were left with the same insecurities. These guys have massive balls for being honest about how they feel. (In fact, everyone keeping a diary & putting themselves out there has massive balls) But I think this does still constitute a poor result. What's the point of doing this if it doesn't actually help your height neurosis? I know people like to dismiss this "Oh, I *know* I won't feel that way" ... all I can say it look at the results. You aren't special. This is something that happens across the board with ALL cosmetic surgery, and is something you should take seriously.
Yes Alu, I'm still lurking :). Honestly, I think the data speaks for itself. I hope it is useful.
-
Although there's plenty of examples of patients needing corrective surgery, the most common negative theme is poor athletic recovery. If a patient genuinely does not care about being fit & mobile, & is happy with no activity outside of walking/jogging/basic movement, a number of diaries could be placed in the "good" category. Walk6, Oldiebutgoodie, dryani, bodybuilder ... they (I think) had had no complications, and for some this would be acceptable. (To me though, this kind of trade off is totally unacceptable...)
Also, as mentioned, some had no complications but were left with the same insecurities. These guys have massive balls for being honest about how they feel. (In fact, everyone keeping a diary & putting themselves out there has massive balls) But I think this does still constitute a poor result. What's the point of doing this if it doesn't actually help your height neurosis? I know people like to dismiss this "Oh, I *know* I won't feel that way" ... all I can say it look at the results. You aren't special. This is something that happens across the board with ALL cosmetic surgery, and is something you should take seriously.
Yes Alu, I'm still lurking :). Honestly, I think the data speaks for itself. I hope it is useful.
I'd say that this would be considered one of the most valuable threads on the forum if you could post the additional data (e.g amount lengthened, the portion and doctor) in the same fashion that you presented your original post.
-
This list is a reality check for 5'8+ dudes who think their life is magically going to improve after they casually lengthen 4cm, have an ultra successful career and bang tons of chicks after.
Also a wake up call for prospective patients who at the offset want to do quadrilateral. Stuff goes wrong first surgery, lets tempt nature a second time!
Limb lengthening is a last resort for short guys who are unable to overcome his social and professional shortcomings despite having improved all other facets of his personhood.
Personally, I would've never done this surgery if I started at 5'7.
-
This list is a reality check for 5'8+ dudes who think their life is magically going to improve after they casually lengthen 4cm, have an ultra successful career and bang tons of chicks after.
Also a wake up call for prospective patients who at the offset want to do quadrilateral. Stuff goes wrong first surgery, lets tempt nature a second time!
Limb lengthening is a last resort for short guys who are unable to overcome his social and professional shortcomings despite having improved all other facets of his personhood.
Personally, I would've never done this surgery if I started at 5'7.
I don't know, it's true that I read a lot of troublesome outcomes but these are almost always from people who lengthen more than 5 cm in one segment and more often than not with a surgeon outside of western europe and nort america.
-
Did you know that one of Paley's patients had a fracture and another one died in 2015? Keep that in mind.
????? died??? where did you hear this? was it a member of the forums?
-
If anyone has any information about patient who died or the scenario please share.
-
Most people say 6cm is safe. If someone does 6cm tibia can they recover then come back 2 years later to lengthen tibia again? Or is the 6cm limit 6cm lifetime recommended limit. Only taking tibias into account not femurs.
-
Limb lengthening is a last resort for short guys who are unable to overcome his social and professional shortcomings despite having improved all other facets of his personhood.
Personally, I would've never done this surgery if I started at 5'7.
Word! I could not agree more!
By the way: A great thread with the compendiums. Maybe we could fill-in the information as a community (how much lenghtened, which limb, etc.)
-
The people who say they lost too much athleticism may get it back eventually. Even after being fully consolidated and having my internal nails removed, it took about a year for me to get to 90%.
I don´t know if you have already answered this question in another thread but I´d like to know how your knees are doing besides the pain when kneeling on a hard surface?
Do you think that your patella is as strong as it was before the surgery? I´ve heard that the patella can burst when performing heavy exercises in the gym (heavy squats, leg press), that´s why I´m a little worried.
Would you do LON again if you had to make the choice again?
-
I got that info from medical sources. I don't know if this person was a member of the forums.
Which medical sources?
-
I don´t know if you have already answered this question in another thread but I´d like to know how your knees are doing besides the pain when kneeling on a hard surface?
Do you think that your patella is as strong as it was before the surgery? I´ve heard that the patella can burst when performing heavy exercises in the gym (heavy squats, leg press), that´s why I´m a little worried.
Would you do LON again if you had to make the choice again?
Besides kneeling on a hard surface being uncomfortable, nothing's wrong with my knees to my knowledge. I'm not worried about my patella bursting. I don't think the surgery does anything to weaken the actual patella. But I haven't tested it out with hundreds of pounds on the leg press machine because there's no way I could lift that much anyway. I'm not a big, strong guy.
I was forced into LON for reasons beyond my control (being rejected by Mitkovic and not being able to afford anywhere known to me but Beijing after that). It wasn't my first choice. I wanted to do external-only tibias because it's the least invasive method. In retrospect, I could've/should've asked Dr. Xia to do external-only and stay at the hospital longer but I didn't think of it at the time. They were offering a package deal with everything included for LON and it didn't occur to me to deviate from that.
-
From Paley website:
"How much money should I keep in reserve in case of a complication?
Complications, although infrequent, can occur and may require surgery to treat and to prevent a negative outcome. An example is premature consolidation of the bone which requires re-breaking the bone. Another is nerve entrapment which requires nerve decompression surgery. Another is muscle contracture which requires lengthening of muscles, tendons, or fascia. Finally, there can be failure of bone healing after the end of the distraction phase requiring repair of nonunion. The cost to treat most of these complications ranges from $12–$35,000. "
So it is not a matter if you get a complication or not, because if you do the procedure, you should be prepared that it can occur. It is a matter of how the doctor help you afterwards and follow up.
When choosing a doctor, you do the research of him (or her) and then you decide to invest in the procedure. The doctor is a human being, and allthough doing his best, things can go wrong of course. As a patient, you must want LL so bad that you are willing to take that risk, having your body operated on. If complications should occur, you must not panic, because you know this can happen, however, you should feel safe that your choice of doctor is so trustworthy you know he does his best to correct it and make the situation as good as possible!
Find a good person you trust.
-
Here's another post I found by Hanshi - he did something similar in 2014, going through each Betz diary.
I have read all the Dr.Betz diaries on old forum and would like to share my findings:
There are currently 38 topics under the "Dr.Betz diaries" folder. 5 of them can't be used for this analysis: David-internal femurs, S-internal tiabias, Measurements, Nctham1, and Iwill. David cancelled his surgery, Nctham is not doing cosmetic LL and the other 3 don't contain enough information.
This leaves 33 cases, which is not a small sample and quite representative since these cases cover a long time span(over 8 years).
within this sample there are 12 patients with confirrmed complications that required additional surgery:
1. Romegas (titanium replacement in 1 leg, reason unknown)
2. Tallix (titanium replacement in 1 leg due to delayed bone healing)
3. TibAndFemur (Nail bending)
4. Stillyoung (Nail bending/breaking)
5. Geheimes (Nail malfunction, bone rebroken and nail taken out and repaired)
6. Tall (Nail bending)
7. Badboy (Nail malfunction, nail exchanged, broken screw)
8. MasterHY ( wound opened and got infected, infected tissue removed surgically)
9. T.dot (nail malfunction twice. Twice nail replacement)
10. OldieButGoldie (2 broken screws)
11. Andrewshizzles (broken nail)
12. Apotheosis tibia (broken nail and delayed/non-union)
Further there are 5 diaries which end abruptly and have a high probability that the patient got a complication:
a. Timone (complains in his last post about bad bone consolidation)
b. Torontonian (vanishes very early during his lengthening)
c. Aymahano (has a lot of problems and vanishes)
d. NoSleep (vanishes just after finished clicking, was the 1st patient to use the new 11mm Betzbone)
e. DcLongFemurs (vanishes after finishing clicking, also has the 11mm Betzbone)
Are the others without complication? For my calculation i will assume so, but of course we cannot be 100% sure since we know that Other patients have tried to hide their complications. What's worth mentioning is that Lucky did have a nail malfunction. However she chose to stop lengthening at that point and therefore didn't undergo additional surgery. But she didn't reach her goal.
Also important is the vanishing of MasterHY. He had already a complication, but from his diary it is obvious that he has had a lot more problems. In my opinion he could very well have a dangerous bone infection.
Anyhow, due to the analysis we come to the following result:
Complication rate for Dr. Betz patients in our sample is between 36% and 52%. 36% is the best case scenario, 52% is the scenario where the 5 abruptly ending diaries all have had complications.
The real figure probably lies between both numbers in case some of those 5 didn't have complications.
I would recommend to read those diaries with open eyes. I have found some interesting information which seems to characterize Dr. Betz quite well. I will write about this at a later time.
I had listed "badboy" as having a good outcome, but only glanced through his diary. Looks like he had some complications along the way that I missed.
-
with which doctors the guys with the medicore and poor outcome did LL?
-
with which doctors the guys with the medicore and poor outcome did LL?
We need to know the amount lengthened and which segment, too. I think the ones with mediocre/poor results either went to the advertised doctors in the old forums or lengthened beyond the optimal length, or maybe did internals.
Too lazy to go through all of the diaries to check
BTW, KiloKAHN and bluebarbie's diary should be in positive outcomes. I guess Dozer too but he didn't finish his diary.
-
I got that info from medical sources. I don't know if this person was a member of the forums.
I would not believe you sorry, unless you mention specifically the "source".
There was no life loss case ever in this surgery, even in China and Russia.
-
No life loss case? Which are your sources? Some people have died as a result of this surgery and all doctors know about this. Some doctors have even described these disastrous outcomes in scholarly articles (e.g. Catagni). Paley is no exception to this. When you operate on many people some of them die. It's a matter of statistics.
I want to clarify that none of Monegal's patients has died (just in case...).
Yes people die in all types of surgeries, even the easiest ones. But I have yet to find a specific report of life loss of this surgery if you can link me to one.
-
BilateralDamage "Big D" can be moved to positive outcomes imo, based on what he told me. As of January last year he said he was lifting weights, walking miles a day, and running on the treadmill.
-
This is a very good idea. If it's not too much work, someone should list the patient, amount lengthened, doctor and diary.
-
One of the most common causes of death during LL is fat embolism. Have a look at this (I am copying from a post by Kilokahn):
Some patients who visited Catagni confirmed this fact.
Secondly, Dr Monegal explained in some of his first posts that there had been some deaths happening as a consequence of fat embolism during LL:
Thirdly, there have been some cases of kids suffering from dwarfism who also died as a consequence of the procedure. Some of them have been mentioned in this forum. One person said the girl was a patient of Monegal, but she wasn't. She was a patient of a different doctor in Barcelona.
https://es-es.facebook.com/Justicia-para-claudia-452811688217408/
http://ccaa.elpais.com/ccaa/2015/04/13/catalunya/1428953407_417126.html
http://www.8tv.cat/8aldia/videos/uns-pares-reclamen-aclarir-la-mort-de-la-seva-filla-en-un-quirofan/
In Malaga there is another famous surgeon some of whose dwarf patients also died.
And so on...
Read your quote...
This fatal outcome might also occur during limb lengthening, particularly in bilateral procedures. To our knowledge, fat embolism has not been reported with the use of centromedullary nail for limb lengthening.
Monegal said yes there are 3 cases of limb lengthening death, but they are all dwalfsm case and not cosmetic. Claudia did not die of surgical complication - her organs disappeared after the surgery
-
A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.
Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
OldieButGoodie - Unhappy with post LL functionality.
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Yellowspike - Continued height neurosis, looking at further surgery
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.
Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
Wow thatdude. Good work you've done here lol.
I actually AM happy with my result. I made it to my initial realistic goal of 5'8". And, aside from the my left screw issue (hope to get it fixed soon), my recovery is very good (though not perfect). Soft tissue recovery takes a while, but stretching has been helping me so much. I'm just happy I was complication-free (unless you count the left screw issue). I'm just not satisfied. But I guess we're saying the same thing.
Also, even though I use a machine (makes it easier/safer, since squatting is harder with long femurs) and not a free barbell, I can squat 285 lbs right now ;)
I would more say my outcome was good physically (would have been closer to ShyShy if not for the left screw and the fact that I had to sit/work a lot during clicking), but didn't solve the height neuroris.
-
i think death case is more a myth than a reality
but there must surely be some cases
-
Thanks, this is a great resource
-
awww
people don't like the truth
Sweden is another one that says how it really is. He doesn't post much, but he clearly says his life has been pretty much ruined
Could go on and on.
There's 1 major difference between me, and the majority of other posters that have gotten this surgery
I tell it like it is. I'm not the only one, but I say what's on my mind, while most of the others say how they wished it were.
big difference
Sweden is another.. The guy can't even use his foot!!! Will it ever be better? Perhaps, perhaps not
will bluebarbie ever recover? Perhaps, perhaps not
will kirkp1? perhaps,perhaps not
Let's see some of these videos from patients doing wonderfully
People don't like that I'm crushing their dream.
Oh well, tough
-
:)))
obviously I hurt someone's feelings
GOOD
we should start a thread which goes through EVERY ll patient thread on this site, and see if it ended well
i'd like to see how many patients are both done with recovery, and had a good final outcome... and have videos to prove it
I think the % will be less than 1%
but let's do it.
-
let;s go through some diaries now
rgkey
mine
swden
bluebarbie
disobedient
copper
yellowspike
doingitforme
inmylife
at ths moment,how many of those can be called a success?
-
kilokahn
yagen
musicmaker
krkp1
how many are done and fully recovered?
think the answer is 0
-
Let's see some actual evidence that even 10% of LL patients have a successful outcome
Actual video evidence
I've seen 2 users post multiple videos
1- sweden
2- rgkey
neither of them has what what I'd consider a positive outcome
Where's the evidence?
Any video purporting to show a positive outcome needs to show at the minimum
1- walking up and downstairs fairly normally
2- leg exercises, such as squatting to parallel
3- normal jogging or running
that's the minimum. No video can show more than a few minutes, so we really can't know how well someone is doing throughout a full day, but if they can't perform the 3 activities listed above, we can safely conclude that the outcome is not positive
Any video should also show evidence of the surgery... being in an external fixator is an obvious method of verification... A little less obvious would be scars consistent with one having had the surgery
I already know we won't have these videos, and that's the point
There's very little evidence of patients having great outcomes
Anyone that disagrees... Fine, prove me wrong
-
My standards are so high...
walking downstairs normally
quasi normal jogging or running
ability to to do basic leg exercises
If these activities are considered too extreme for LL patients, that proves my point
-
My standards are so high...
walking downstairs normally
quasi normal jogging or running
ability to to do basic leg exercises
If these activities are considered too extreme for LL patients, that proves my point
Given the obesity rate in the united states and the amount of men willing to shoot up steroids to look better, or even self injecting melataonon to get a better tan. Or how people really are fake in general let's face it going to the club no one cares about anything woman want a tall guy. They don't care how he looks as long as you hide the LL your gonna do better. If that is what people want to get better at those sort of situations as they don't want to get married or have kids let them.
Many American also cannot do those things, and actually most people can't do a single pull up or chin up correctly.
-
Given the obesity rate in the united states and the amount of men willing to shoot up steroids to look better, or even self injecting melataonon to get a better tan. Or how people really are fake in general let's face it going to the club no one cares about anything woman want a tall guy. They don't care how he looks as long as you hide the LL your gonna do better. If that is what people want to get better at those sort of situations as they don't want to get married or have kids let them.
Many American also cannot do those things, and actually most people can't do a single pull up or chin up correctly.
Women in clubs only want a tall guy while completely disregarding facial aesthetics? That is the most absurd thing I have ever read or heard in my life. Just like we wanna bang a hot chick in a club without investigating her personality, the girls in the clubs only wanna bang a hot guy. And a hot guy is not only a guy who is tall....
-
The biggest problem in clubs is that soo many hot girls wear high heels that make them 1,80+. Being taller simply offers you more possibilities, and it also increases your overall attractiveness. Facial aestethics are more important than height but I doubt that an attractive 170 guy has good chances of getting a lot of hot girls in clubs were most of them are 175+ in their heels.
-
Wow thatdude. Good work you've done here lol.
I actually AM happy with my result. I made it to my initial realistic goal of 5'8". And, aside from the my left screw issue (hope to get it fixed soon), my recovery is very good (though not perfect). Soft tissue recovery takes a while, but stretching has been helping me so much. I'm just happy I was complication-free (unless you count the left screw issue). I'm just not satisfied. But I guess we're saying the same thing.
Also, even though I use a machine (makes it easier/safer, since squatting is harder with long femurs) and not a free barbell, I can squat 285 lbs right now ;)
I would more say my outcome was good physically (would have been closer to ShyShy if not for the left screw and the fact that I had to sit/work a lot during clicking), but didn't solve the height neuroris.
Cool - good that you're recovering fairly well. When I put you in the poor category my thinking was, if a reasonable person was told before doing LL that the result would do nothing for their height neurosis and they would still feel short - would they consider that a good outcome? Would they still do the surgery? Probably not. I'd edit you into the neutral category (or even positive of your height neurosis does end up resolving itself without further surgery and you're happy with your athletic abilities) but I can't seem to edit the post.
You use the smith machine? And do you think the reason is long femurs, or poor ankle flexibility that's stopping you squatting? I'd guess the latter. Video?
-
how much did BD gain, Kilo?
-
Let's see some actual evidence that even 10% of LL patients have a successful outcome
Actual video evidence
I've seen 2 users post multiple videos
1- sweden
2- rgkey
neither of them has what what I'd consider a positive outcome
Where's the evidence?
Any video purporting to show a positive outcome needs to show at the minimum
1- walking up and downstairs fairly normally
2- leg exercises, such as squatting to parallel
3- normal jogging or running
that's the minimum. No video can show more than a few minutes, so we really can't know how well someone is doing throughout a full day, but if they can't perform the 3 activities listed above, we can safely conclude that the outcome is not positive
Any video should also show evidence of the surgery... being in an external fixator is an obvious method of verification... A little less obvious would be scars consistent with one having had the surgery
I already know we won't have these videos, and that's the point
There's very little evidence of patients having great outcomes
Anyone that disagrees... Fine, prove me wrong
I agree. Until there's better evidence of recoveries (rather than just 1, questionable example [ShyShy] from 100's of diaries) you guys are having your desperation exploited. You're getting butchered by doctors and making them rich - and often yourself poor - in the process.
-
I agree. Until there's better evidence of recoveries (rather than just 1, questionable example [ShyShy] from 100's of diaries) you guys are having your desperation exploited. You're getting butchered by doctors and making them rich - and often yourself poor - in the process.
The Catagni patients I have spoken to are all happy. And Lumier is a real person
-
That doesn't really say that much though does it? Feelings count for something, but of course they'll try to be happy. What counts most are empirically verifiable results ... actual proof of recovery and ability rather than just words.
-
That doesn't really say that much though does it? Feelings count for something, but of course they'll try to be happy. What counts most are empirically verifiable results ... actual proof of recovery and ability rather than just words.
They dont report any problems with walking.
-
"Continued height neurosis" isn't a negative outcome of the surgery. YellowSpike's considering another LL because his first one went well, why isn't that in positive outcomes?
-
They dont report any problems with walking.
Most don't, it's the next level and beyond that we're not seeing much of.
Penguin - I can't edit, but I don't think it was unfair. Maybe neutral would have been better ... but if the surgery doesn't cure height neurosis then what was the point?
-
Most don't, it's the next level and beyond that we're not seeing much of.
Penguin - I can't edit, but I don't think it was unfair. Maybe neutral would have been better ... but if the surgery doesn't cure height neurosis then what was the point?
What do you want them to report? They all got back to work and do not regret the surgery.
-
What do you want them to report? They all got back to work and do not regret the surgery.
They don't have to report anything. But if I was considering surgery I'd want some evidence of post surgery athleticism. Not just walking and jogging.
And more information about the patients too. The average person is oberweight and slow. If an overweight slow person who never does anything athletic has the surgery and is back to their life of just walking ... well, that doesn't tell me much because their lifestyle and expectations are nothing like the ones I have for myself.
-
3 diaries I'd consider successful are
1) Wannabegiant 4.5cm Tibias
2) Discreteuser 4.1cm Tibias
3) Vetpat initially lengthened 5.5cm ended up approx 5.2-5.1cm
due to taking off fixators a little early leading to compression. Tibias
I am counting as success the ability to return to over 95% athletic
ability from people who were athletic pre LL.
-
New additions please:
Positive: stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)
Neutral: prince2 "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.
Negative: BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union.
-
This is really helpful, Thatdude
I have actually been compiling a list of my own, detailing the results from the Sringari House. Still gonna be a while, as I haven't yet tracked everyone down.
Not trying to downplay or put a happy face on anything, but to clarify:
- I am 25 months post-frame removal. Also, I had a lot of delays in taking corrective actions due to crappy insurance and well...frustration and depression, honestly.
- Not sure if "multiple corrective surgeries" is entirely accurate. The ankle surgery is a bit of a gray area. I had damaged it years before. Having my leg broken above it definitely did not help it, but I was discussing a surgery with a foot doc back in 2013, a few months pre-LL
- I am 1 day post-revision nailing/bone graft. That one definitely counts as a corrective. And in case anybody wants to know: the surgery went great. The nerve block is gradually wearing off and I just started bending my knee a few hours ago and am resuming my glute/hip/core exercises...in bed (LOL, sounds like that fortune cookie joke!)
-
New additions please:
Positive: stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)
Neutral: prince2 "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.
Negative: BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union.
Thatdude950, Video evidence is not pending. I'd never post a video of myself on any forum. If you find yourself on the West coast ever, I'll gladly invite you to a workout ;)
-
bigfaker,
why can't you run? Bone issues?
-
Hey crimson,
I have (partial) non-union in the L anterior tib. I had a bone graft and revision nailing yesterday. I have jogged a tiny bit, but only in the Alter-G treadmill, at maybe 30% weight. I have videos I'll post eventually, but it's not very impressive...actually all my Alter-G videos are just walking so far...I do have some footage of Patient 6 running when he came to visit CA last year.
How are you doing lately?
-
This is really helpful, Thatdude
I have actually been compiling a list of my own, detailing the results from the Sringari House. Still gonna be a while, as I haven't yet tracked everyone down.
Not trying to downplay or put a happy face on anything, but to clarify:
- I am 25 months post-frame removal. Also, I had a lot of delays in taking corrective actions due to crappy insurance and well...frustration and depression, honestly.
- Not sure if "multiple corrective surgeries" is entirely accurate. The ankle surgery is a bit of a gray area. I had damaged it years before. Having my leg broken above it definitely did not help it, but I was discussing a surgery with a foot doc back in 2013, a few months pre-LL
- I am 1 day post-revision nailing/bone graft. That one definitely counts as a corrective. And in case anybody wants to know: the surgery went great. The nerve block is gradually wearing off and I just started bending my knee a few hours ago and am resuming my glute/hip/core exercises...in bed (LOL, sounds like that fortune cookie joke!)
Thanks for the clarification.
I saw a post by OldiebutGoodie - he wasn't happy with my assessment. He didn't think the surgery was worth it, but had no complications and doesn't consider it a poor outcome. I'd like him moved to neutral and his reply to be added next to his name, I'll try find it.
-
Another one - andrewshizzles. He's an interesting one. He's able to run and move around OK. He runs a 30 minute 5k which is very very average but not awful, can shoot hoops OK etc. But he had a serious complication - his nail broke post recovery, his leg snapped in half and he had to fly half way around the world for emergency surgery. Please add him to "other outcomes".
-
This surgery definitely is 50/50. I remember looking at this topic a while back and thinking just how risky this surgery is.
Also, a lot of the people that had poor outcomes were the people who went with bad doctors.
-
@Thatdude - Do you know who his doctor was and how much he lengthened? That sounds really scary. How's he now?
-
His diary is on the old forum - he used Betz and did 8-9cms.
-
I'd put myself in the neutral category to be honest. While there have been lots of problems during the journey, saying the outcome is bad is misleading.
-
The good:
Data is available from real people who have undergone this procedure and have willingly shared their experience.
The bad:
It's a limited sample set with a lot of variability. Realistically, most people that go through this procedure don't post or keep a diary. I met several folks going through CLL who have zero intention of sharing their experience. Add to that the hundreds, perhaps thousands that churn through the hospitals in China and India who undergo CLL for social reasons particular to their society. They would never dare reveal that they've had CLL, much less the outcomes, and that's a big number of patients.
How the good can help:
Correlate the data that's available with
- surgeons
- type of procedure
- segments operated on
- amount lengthened
to see if trends can be identified, even with a limited sample set (others have asked for this as well)
Caveat Emptor:
This is not a scientific study, and while good intentions are assumed on the part of the folks who share, the data can (again, read best intent first, but realize it's possible) be misleading, false, inaccurate for whatever reason, etc. Take into consideration different time frames for the procedure, various ages and states of health/physical fitness, etc.
IMHO and my .02.
Best,
--jbc
-
You shouldnt mix complications along the way (like programdude's and anderwiezeld or however you spell it) with bad outcomes. Outcome is the end result... If the end result is good than everything's good.
For example, the Israeli I posted about abotu a year ago who did 9cm on femurs with betz said on a radio interview in Israel that both his nails broke (on different dates) so he had to fly 2 times to Germany to get things repaired. He also did a corrective surgery in Israel once lengthening was done. But the end result is that he is completely happy. His outcome from a personal perspective should be put on "good". But according to the list here his outcome would have been bad.
Also, it depends on what you base a good or bad outcome... A return to 100% pre-op capabilities in everything? That would mean no good outcome is possible... A good outcome in my opinion is when a sane LLer says "If I could go back and cancel the surgery, I wouldnt cancel it since i am happy with the end result".
If someone is willing to sacrifice functionality to a certain degree it's their right (since there is no chance to a complete 100% athletic recovery)... Also, what one might consider an acceptable athletic recovery wont be acceptable for another.
-
^ Well put. If someone before I got LL said for a matter of fact: "Your outcome is going to be a bad outcome." I would have opted out of the surgery. However if they said "It's going to take longer to recover than you expect and you'll have a stress fracture" I wouldn't have the same reaction.
Also, great point about what is considered good outcome. No one is getting back to 100% after all.
-
we need to add heythereworld - or what his name is . who is back to 95 % normal
also i think it would be great to write how many cm people on the list have done. and there dr.
-
Very informative thread, with a lot of good posts.
It really would be great to have a dataset of lengthening, doctor, segment, interior/exterior and the outcome or possible complications.
-
The list should be updated. Consider all data. I have some information.
-
This is a terrific idea! A good start to providing useful information for those contemplating surgery.
I would prefer that the one compiling the information refrains from classifying the outcome as good to poor unless specifically stated as such by the diary author or made obvious by the authors final comments. Objectivity makes this information much more valuable in my opinion. Obviously, there are some outcomes that would be considered poor or disastrous to anyone. However, in many cases, what is a considered a positive outcome for some would be classified as unacceptable to others and likewise.
-
Bumping this post because we really need to update this. Also as a relief from less important trolls
-
This is a terrific idea! A good start to providing useful information for those contemplating surgery.
I would prefer that the one compiling the information refrains from classifying the outcome as good to poor unless specifically stated as such by the diary author or made obvious by the authors final comments. Objectivity makes this information much more valuable in my opinion. Obviously, there are some outcomes that would be considered poor or disastrous to anyone. However, in many cases, what is a considered a positive outcome for some would be classified as unacceptable to others and likewise.
That's a fair point. To counter that I've had moderators move outcomes from one section to another when there are disagreements with my assessment-- especially from the lengthener in question, so this removes part of my bias.
The positive of setting it out this way though, is that it gives a good overview that anyone can just glance over without having to delve deeply into the results.
& I agree that it's time for some updates-- anyone can post a brief overview of a diary if they'd like, it doesn't have to be me.
-
update compendium
-
we need an update for sure
-
Great work, thx bro ... But even the most complete list, evaluated with the most advanced statistical tools , will not stop most of us doing this surgery or really help us find the right doctor for our operation. We should never forget that this is a very risky operation but that most of us cannot live with being short...
-
Thatdude950,
Thank you for putting the stats together. I just had my bilateral Tib/Fib operation with Dr. Mahboubian in CA. I’m doing my bilateral Femurs next month. He has done a dozen of these (stage surgery) so I hope to share my experience with everyone. Can you create a journal for me so I can start writing? If you can’t, can you point me to the right person? Thank you.
I’ve been sharing my experience on the old forum but the site is not that active. Thank you very much.
Optimistic1
-
Can you create a journal for me so I can start writing? If you can’t, can you point me to the right person?
You should be able to make a new topic yourself. Go to the right section and look for the New Topic button near the top right.
-
“You should be able to make a new topic yourself. Go to the right section and look for the New Topic button near the top right.”
Hi Android,
Thank you for replying to my question. Is it possible that you take a screenshot of that section where you referred to and send it to me lexuslflc500@gmail.com? It’s either me or the pain meds, but I can’t seem to locate that option.
I just finished my bilateral Tib/Fib procedure about 5 days ago (2.15.18). My bandages are already off and I’ll be lengthening this Friday. The process wasn’t that bad. I hope doing my femurs which is scheduled for next month is going not to be be too bad. I read LAGrowin’s journal and looks like he’s been through a lot with his femurs. He’s a great guy and I got to talk to him before his surgery. Maybe it was easy for me because I did the Tib/Fib not Femurs. However, my procedure involves breaking 4 bones, not just 2. I’ve been in the hotel room taking care of myself fine. I excused my private nurses only after 2 days. Hopefully, it will continue to be this good onward.
Optimistic1
-
Hey Optimistic, sent you a PM so you get this, but here it is for others to see if it helps too:
(https://i.imgur.com/WH5Ut6M.png)
-
Thank you very much, Android. I got it.
Optimistic1
-
Is Anyone working on this ?
-
Is Anyone working on this ?
I could add my outcome over time, and those of several other Paley patients I know (e.g. Purushrottam - great outcome (http://www.limblengtheningforum.com/index.php?topic=4823.msg84831#msg84831)), but there are some problems with compiling outcomes here in this forum (and in general):
- Technology improves. The outcomes from STRYDE patients should be a lot better than those from PRECICE 2.2 patients. This will make a number of diaries obsolete.
- This particular forum doesn't allow the person compiling outcomes to update a post. Thus we'll end up with more and more posts in this thread as time passes by and patients move through stages (surgery -> lengthening -> consolidation -> walking -> sports -> nail removal). I've proposed to Admin that we upgrade the forum (http://www.limblengtheningforum.com/index.php?topic=5281.msg82719#msg82719), but got no reply. The upgraded forum would allow editing posts, and also making them wikis, so anyone can edit, not just one person who started the thread.
-
Moderators, this is serious. Neither are you commenting neither taking action on the above points. This is like you are playing with the lives of future LLers by making them unable to make the most out of the information posted here. Please comment(and if possible take actions or tell why the following is not possible):
-upgradation of the form as provided by OYG
-why spreadsheet kind of data of of former and current LLers can't be uploaded.
-why are you not commenting on any suggestions to improve the forum?
-are their any financial or technical constraints? If yes please share with us so that we can crowdsource the solutions for the same.
Hoping to get a fast reply this time.
-
Poor outcomes:
[Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
[
[
The word "outcome" is quite misleading as it is all a big and yes for some long process, and "outcome" indicates a final result.
I am definitely doing well now. Doing everything normally and doing sports every week. Having beaten players in tennis lately that are better than I was pre-LL.
When the bone is there, everything else will come back as well. Unless some serious stuff like nerve damage has been done.
The list should be updated and corrected for sure.
-
The word "outcome" is quite misleading as it is all a big and yes for some long process, and "outcome" indicates a final result.
I am definitely doing well now. Doing everything normally and doing sports every week. Having beaten players in tennis lately that are better than I was pre-LL.
When the bone is there, everything else will come back as well. Unless some serious stuff like nerve damage has been done.
The list should be updated and corrected for sure.
Hi Emanuel. I concur with that) But if it's outcome, I'd say I had a good one and I'm not even on the list, so definitely out of date!
Good to hear you're doing sports and playing tennis. Tennis was my youth pretty much, probably what got me thinking about LL. I always thought if I was just a couple of inches taller, I'd have a much better serve. These days I don't play so much, but I follow the major tournaments and I'm a big Roger fan. You must be a Rafa fan with a Spanish sounding name). Disappointed Roger lost to Novak at Cincinnati but Roger wasn't in form, too many unforced errors. No chance in current form at US open.
-
Hi Emanuel. I concur with that) But if it's outcome, I'd say I had a good one and I'm not even on the list, so definitely out of date!
Good to hear you're doing sports and playing tennis. Tennis was my youth pretty much, probably what got me thinking about LL. I always thought if I was just a couple of inches taller, I'd have a much better serve. These days I don't play so much, but I follow the major tournaments and I'm a big Roger fan. You must be a Rafa fan with a Spanish sounding name). Disappointed Roger lost to Novak at Cincinnati but Roger wasn't in form, too many unforced errors. No chance in current form at US open.
Actually Emanuel is just my fake name for LL ;) But you guessed right about Rafa, it's my favourite player.
When playing tennis my stamina is still worse than pre LL. Running speed feels fine, though I haven't measured it. I hope it will all come back 100%, planning to play league games and tournaments again next year.
Service feels somewhat easier with the extra height (better angle), especially as I had been very short before.
How about your stamina when doing sports, is it back to 100%?
-
Rafa is the undisputed king of clay! 11 f***ing French opens! How??! I didn't like him in the beginning, but I have a lot of respect for him now.
I'd say my stamina was as good as if not better than before? I ran for half an hour yesterday and hardly ran out of breath. The only think that's lacking is flexibility around the hips, but that's because I haven't worked at it so much.
Don't forget you're not fully recovered yet. You still have rods inside! Once you take those out, then the real recovery begins as your bone marrow fills up again as well as any holes from screws etc. Your bones will get stronger and you'll feel better as time goes by. When are you planning to come to Kiev? I have to return to the UK in the first week of September, sadly my father is very ill, but I may return later, I'll see.
-
Rafa is the undisputed king of clay! 11 f***ing French opens! How??! I didn't like him in the beginning, but I have a lot of respect for him now.
I'd say my stamina was as good as if not better than before? I ran for half an hour yesterday and hardly ran out of breath. The only think that's lacking is flexibility around the hips, but that's because I haven't worked at it so much.
Don't forget you're not fully recovered yet. You still have rods inside! Once you take those out, then the real recovery begins as your bone marrow fills up again as well as any holes from screws etc. Your bones will stronger and you'll feel better as time goes by. When are you planning to come to Kiev? I have to return to the UK in the first week of September, sadly my father is very ill, but I may return later, I'll see.
How much did you lengthen bro and was it both femurs and tibia or just one segment, glad to hear athleticism is still good after surgery
-
How much did you lengthen bro and was it both femurs and tibia or just one segment, glad to hear athleticism is still good after surgery
I put a cm for each French open Rafael Nadal won - that b@stard! (femurs only)
-
I put a cm for each French open Rafael Nadal won - that b@stard! (femurs only)
Wow big amount so would you say your fully recovered and if so how long did it take on your recovery, do you have a diary?
-
Diary (some gym clips on page 2):
http://www.limblengtheningforum.com/index.php?topic=9000.0
More photos:
http://www.limblengtheningforum.com/index.php?topic=9023.0
-
Diary (some gym clips on page 2):
http://www.limblengtheningforum.com/index.php?topic=9000.0
More photos:
http://www.limblengtheningforum.com/index.php?topic=9023.0
No problem thanks
-
Moderators, this is serious. Neither are you commenting neither taking action on the above points. This is like you are playing with the lives of future LLers by making them unable to make the most out of the information posted here. Please comment(and if possible take actions or tell why the following is not possible):
-upgradation of the form as provided by OYG
-why spreadsheet kind of data of of former and current LLers can't be uploaded.
-why are you not commenting on any suggestions to improve the forum?
-are their any financial or technical constraints? If yes please share with us so that we can crowdsource the solutions for the same.
Hoping to get a fast reply this time.
The site admin/owner is the only one who can make any forum upgrades. That's outside the realm of moderator capabilities.
Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.
-
The site admin/owner is the only one who can make any forum upgrades. That's outside the realm of moderator capabilities.
Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.
Yes, then ask admin/owner to do the same.
Also if a minor change can bring positive change to lives of millions of users, don't you think it should be taken up? I can very well search and dig the data, but if the data is put in a more accessible/ readable format shouldn't it save my time/energy which I can put to another good uses?
-
Yes, then ask admin/owner to do the same.
Also if a minor change can bring positive change to lives of millions of users, don't you think it should be taken up? I can very well search and dig the data, but if the data is put in a more accessible/ readable format shouldn't it save my time/energy which I can put to another good uses?
Nobody owes you anything. If you want, start your own forum. At least be polite if you asking for help from someone.
No one cares about your time. If you want to make good use of your time, go earn money and go to a good LL doctor.
-
Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.
I'd agree with that. However, there's so much irrelevant information in this forum, that a new LL candidate just doesn't need to go through. And this forum doesn't allow updating posts older than a few hours, which forces EVERY SINGLE READER to pointlessly go through an entire thread, when the OP would be perfectly willing to volunteer updating the first post with the summary of the topic. (I know I would).
Admin, I understand you no longer care about LL (I'm far less often on here now that I'm done with it, than before), but please realize that once you've created this forum for people to share their journeys and questions, you do have a moral responsibility to them. It's fine if you want to step away, but please enable others to carry the torch.
Nobody owes you anything. If you want, start your own forum. At least be polite if you asking for help from someone.
I offered to upgrade the forum (see my post above), because I've done this before, and I have the knowledge, will and means to keep a forum up to date indefinitely. But my hands are tied without the collaboration of whoever is administrating this forum.
-
I'd agree with that. However, there's so much irrelevant information in this forum, that a new LL candidate just doesn't need to go through. And this forum doesn't allow updating posts older than a few hours, which forces EVERY SINGLE READER to pointlessly go through an entire thread, when the OP would be perfectly willing to volunteer updating the first post with the summary of the topic. (I know I would). So yea, f*** you admin for starting this and dropping the ball.
I offered to upgrade the forum (see my post above), because I've done this before, and I have the knowledge, will and means to keep a forum up to date indefinitely. But my hands are tied without the collaboration of whoever is administrating this forum.
Yup, if someone is an admin, he should be providing ways to improve, facilitate the improvement by working in collaboration with the ones who are willing to do it, rather than saying go fk yourself and create a new forum. Why are you admin then, don't you think with power comes responsibility?
-
A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.
Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)
Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Yellowspike - Continued height neurosis, looking at further surgery
prince2 - "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.
OldieButGoldie - Unhappy with post LL functionality. Updated: I saw a post by OldiebutGoodie (see reply #99 in OldieButGoldie's Patient's Experience Topic) - he wasn't happy with my assessment. He didn't think the surgery was worth it, but had no complications and doesn't consider it a poor outcome
Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Cooper - "Serious complications, corrective surgery(s) required, 100k+ in additional costs.
musicmaker - "multiple corrective surgeries required"
BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union
Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.
Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
andrewshizzles - He's an interesting one. He's able to run and move around OK. He runs a 30 minute 5k which is very very average but not awful, can shoot hoops OK etc. But he had a serious complication - his nail broke post recovery, his leg snapped in half and he had to fly half way around the world for emergency surgery.
Edited: For Thatdude950 to include updates/additions to original post (May 2016)
... Hey .. Thatdude950, great job ... when can we have a update?
-
Just posting back here since I see the post was never updated but I firmly put myself in the positive outcome section but that was despite a fracture and a long recovery in general.
While I definitely want to point out that my experience did NOT play out the way I envisioned, and I think my case is a lesson that no matter how prepared you are for LL, that things can still go awry- But my surgery completely cured my dysphoria, so lumping me in with the negative experience crowd is disingenuous because I haven't regretted LL and am a proponent of it for people in similar head spaces as I was pre LL, albeit a cautious one that doesn't think its right for everyone, especially those who need to recover quickly for work or care about sports.
-
Hello everyone !
Do you think this topic is now obsolete with new techniques like the STRYDE nail? If I understood correctly, the negative effects came mainly with external nails, no ?
Also thank's to programdude who did this huge work !
-
No, it is far from obsolete. Anyone can have problems with LL and not everyone can afford STRYDE even if it were a solution to every LL issue.
-
No, it is far from obsolete. Anyone can have problems with LL and not everyone can afford STRYDE even if it were a solution to every LL issue.
Yes you're right, i forgot that STRYDE is still too expensive for many people.
-
I'm very short and I've been obsessing over LL... I think it would improve my quality of life a lot. But this thread makes me think it's not worth the risk. Is this really how dangerous it is? Or are we seeing only the perspective of people who were bothered to report complications? Are there better statistics?
-
There are no better statistics...The risks are real..Say, I tell you that 97% chance that you will not have any problems, would you do it?There is always a risk of 3% but for you it is 100% if it happens..So, you should be prepared..Do it if you are adventurous or if your height is causing you so much problem that there is no way out..
-
Thanks for the new perspective, I hope more people can read this before jumping straight into this surgery
-
the risks are real. also as mentioned earlier the statistics may not be correct from neutral point of view.
FOr example Apotheosis is listed as good outcome, anyone who has seen Apo knows he is fked beyond recovery. For Apo -it may be successfull LL to walk 20-30 meters a day, but for for example me that would be horrible outcome. I need to jump, jog, run, be somewhat athletic.
There are 2 things that determine your outcome; amount of lengthening and LL technique. If you do internals such as precice/stryde or fitbone you will most likely have good outcome. Dont go to russia or india to do to LL. you're asking for trouble.
Also this may sound a bit controversial but lengthening over 6cm is big risk. You're altering the anatomical axis and its gonna have consequences the more centimeters you do.
anyway, you can add me to the successful list
I did 5.5 femur stryde with Dr. Köhne and is 2 years post op and nails are just out. so im healing, but I have been at the gym just today and done short sprint, jumping and twisting and turning (see dribble in football) and it looks like im headed for pre-LL athelticism. If i reach 90% of my pre-LL state then I am happy. i wont know before in 2-3 in months though. so i will update this thread.
-
Also this may sound a bit controversial but lengthening over 6cm is big risk. You're altering the anatomical axis and its gonna have consequences the more centimeters you do.
The reason it's controversial is because most people who engage with this surgery is psychotic beyond reason. In the forums and irl (where I'm staying). It's f*cking alarming. Look the Meck's case - he did +17cm in 2 surgeries and he claims to bend >90* (he can't - he can barely do 45*). He posts asinine pictures of his cars and tanning beds when people ask how he's doing. His walk is severely crippled.
Look at programmer dude - he did 8cm with the best dr in the world (Paley). He survived and is doing great now, thanks to Paley, but he had a fking femur stress fracture. Jesus christ.
People here are doing +8cm and expecting to go back to normal life. This is crazy. My best advice, regardless of method, is please be conservative and take care of yourself. Nobody is going to watch your back or take care of you except yourself.
I finished barely 5cm and I feel this is too risky. Please be careful, you're taking your lives into your hands.
-
the risks are real. also as mentioned earlier the statistics may not be correct from neutral point of view.
FOr example Apotheosis is listed as good outcome, anyone who has seen Apo knows he is fked beyond recovery. For Apo -it may be successfull LL to walk 20-30 meters a day, but for for example me that would be horrible outcome. I need to jump, jog, run, be somewhat athletic.
There are 2 things that determine your outcome; amount of lengthening and LL technique. If you do internals such as precice/stryde or fitbone you will most likely have good outcome. Dont go to russia or india to do to LL. you're asking for trouble.
Also this may sound a bit controversial but lengthening over 6cm is big risk. You're altering the anatomical axis and its gonna have consequences the more centimeters you do.
anyway, you can add me to the successful list
I did 5.5 femur stryde with Dr. Köhne and is 2 years post op and nails are just out. so im healing, but I have been at the gym just today and done short sprint, jumping and twisting and turning (see dribble in football) and it looks like im headed for pre-LL athelticism. If i reach 90% of my pre-LL state then I am happy. i wont know before in 2-3 in months though. so i will update this thread.
thats some sane advice. these days in turkey everyones doing 12 cm lol
do you really feel comfortable playing football after this? Ive never seen a short guy playing football. you must be really really fast if you play with giants. what was your starting height? I suggest you dont play it lol atleast for some time to come.
Do you have any opinions on how to hide this from others? I told my then gf about my plans stupidly but afterwards people on this forum convinced me that its not a good idea. but even now I dont know how to hide it from everyone including the girl I marry. is 5.5 cm something you can just ignore like it never happened and no one will bother you about?
thanks
-
thats some sane advice. these days in turkey everyones doing 12 cm lol
do you really feel comfortable playing football after this? Ive never seen a short guy playing football. you must be really really fast if you play with giants. what was your starting height? I suggest you dont play it lol atleast for some time to come.
Do you have any opinions on how to hide this from others? I told my then gf about my plans stupidly but afterwards people on this forum convinced me that its not a good idea. but even now I dont know how to hide it from everyone including the girl I marry. is 5.5 cm something you can just ignore like it never happened and no one will bother you about?
thanks
Maybe you are confusing football and American football. In football, many players are shorter than average. Some of the best players ever are below average.
-
is 5.5 cm something you can just ignore like it never happened and no one will bother you about?
No. You will be absent for 2 months after surgery doing lengthening, and at least 2-3 months recovering.
Total time is 4-5 months - can you disappear for that long?
-
No. You will be absent for 2 months after surgery doing lengthening, and at least 2-3 months recovering.
Total time is 4-5 months - can you disappear for that long?
You could have disappeared for that long during the pandemic with no one noticing :P
-
thats some sane advice. these days in turkey everyones doing 12 cm lol
do you really feel comfortable playing football after this? Ive never seen a short guy playing football. you must be really really fast if you play with giants. what was your starting height? I suggest you dont play it lol atleast for some time to come.
Do you have any opinions on how to hide this from others? I told my then gf about my plans stupidly but afterwards people on this forum convinced me that its not a good idea. but even now I dont know how to hide it from everyone including the girl I marry. is 5.5 cm something you can just ignore like it never happened and no one will bother you about?
thanks
football = soccer in USA.
Only people who knows about this surgery is the surgeon team and my PT. I dont intend to tell anyone, I dont think you should. Especially friends, they can use it against you in future and if rumour spread it may get so bad you have to change town and start over again. Thats not ideal.
With Stryde I could walk awkwardly after 1 week so I could tell them different story and they would accept it. But with Precice and non-weight bearing, you may need a bigger story :P
its not possible to hide it because you will walk strange for few months. If you can disappear and come back after say 4-5 months then maybe.
-
football = soccer in USA.
Only people who knows about this surgery is the surgeon team and my PT. I dont intend to tell anyone, I dont think you should. Especially friends, they can use it against you in future and if rumour spread it may get so bad you have to change town and start over again. Thats not ideal.
With Stryde I could walk awkwardly after 1 week so I could tell them different story and they would accept it. But with Precice and non-weight bearing, you may need a bigger story :P
its not possible to hide it because you will walk strange for few months. If you can disappear and come back after say 4-5 months then maybe.
you did before the pandemic and managed to tell no one. thats insane. well done.
Do you feel some sense of anxiety that somehow people might find out? I had first thought to do it with every one around me supporting me before but after reading peoples comments on articles on dailymail and other such media websites I think no one will understand. its better to keep it secret as much as possible. So I have that extra anxiety that someone might eventually know.
if I do at Paleys and stay in that hotel, I will meet other patients for sure. if I do it at Mahboubians or Debiparshads I should wear a hoodie, shades and a mask during consults and beg them to not put anything on social media.
there are medical privacy laws but you cant stop people from just carelessly saying something.
sometimes I think it would be great if there was some other diagnosis like deformed legs so that you can tell everyone you got that fixed and not "hide" anything. get sympathy AND height :P doctors should correct some alignment just for the heck of it and write that off as the main procedure officially lol
-
you did before the pandemic and managed to tell no one. thats insane. well done.
Do you feel some sense of anxiety that somehow people might find out? I had first thought to do it with every one around me supporting me before but after reading peoples comments on articles on dailymail and other such media websites I think no one will understand. its better to keep it secret as much as possible. So I have that extra anxiety that someone might eventually know.
if I do at Paleys and stay in that hotel, I will meet other patients for sure. if I do it at Mahboubians or Debiparshads I should wear a hoodie, shades and a mask during consults and beg them to not put anything on social media.
there are medical privacy laws but you cant stop people from just carelessly saying something.
sometimes I think it would be great if there was some other diagnosis like deformed legs so that you can tell everyone you got that fixed and not "hide" anything. get sympathy AND height :P doctors should correct some alignment just for the heck of it and write that off as the main procedure officially lol
hi,
all valid concerns you have.
I have to admit that by undergoing LL I can never be a politician, leader or anything with media presence. I risk getting "exposed" by some .
There are few things that can go wrong:
- the computer system at these hospitals may get hacked and patient data leaked in future
- someone in the surgeon team may recognize me if I were to appear in media/ TV and tell their friend, then they tell theirs and so on
- LL may get more publicity in future. Maybe a famous celebrity undergoes it publicly and the normal people that I know may think back to how I walked and recognize the pattern.
-
hi,
all valid concerns you have.
I have to admit that by undergoing LL I can never be a politician, leader or anything with media presence. I risk getting "exposed" by some .
There are few things that can go wrong:
- the computer system at these hospitals may get hacked and patient data leaked in future
- someone in the surgeon team may recognize me if I were to appear in media/ TV and tell their friend, then they tell theirs and so on
- LL may get more publicity in future. Maybe a famous celebrity undergoes it publicly and the normal people that I know may think back to how I walked and recognize the pattern.
your 100% right.
looking back, would you rather
a) do this procedure and eventually people (your wife who you hid it from, your friends, your family, your colleagues, etc) find out you did it
or
b) never do this procedure and be short
Im really upset that stryde got withdrawn. if it was there, I was hoping the general public would eventualy learn that its not a big deal to do this, but I dont think thatll happen in our youths.
-
hi,
all valid concerns you have.
I have to admit that by undergoing LL I can never be a politician, leader or anything with media presence. I risk getting "exposed" by some .
There are few things that can go wrong:
- the computer system at these hospitals may get hacked and patient data leaked in future
- someone in the surgeon team may recognize me if I were to appear in media/ TV and tell their friend, then they tell theirs and so on
- LL may get more publicity in future. Maybe a famous celebrity undergoes it publicly and the normal people that I know may think back to how I walked and recognize the pattern.
bro I thought about this and just want to advice you to not hold yourself back from becoming successful or famous if want to. dont associate your identity to just this procedure. life is bigger than this. ok, even if you become famous and some people find out, they should think this procedure can be done by successful people. like if you heard that some famous social worker in your country did this, then it would vindicate the surgery a little rather than indict the social worker. you have used your money and time to improve yourself. youve not caused harm to anyone after all.
we all have to start thinking of how we can shape the world instead of always being defensive.
:)
-
bro I thought about this and just want to advice you to not hold yourself back from becoming successful or famous if want to. dont associate your identity to just this procedure.
we all have to start thinking of how we can shape the world instead of always being defensive.
:)
100% - preach brother. This is a stepping stone in improving our lives. Let's live life large and in charge!
For the sake of the forum being clean/tidy, let's stay on topic please :) I will vanish now
-
your 100% right.
looking back, would you rather
a) do this procedure and eventually people (your wife who you hid it from, your friends, your family, your colleagues, etc) find out you did it
or
b) never do this procedure and be short
Im really upset that stryde got withdrawn. if it was there, I was hoping the general public would eventualy learn that its not a big deal to do this, but I dont think thatll happen in our youths.
probably B
sry
-
Of course A). When people find out that may think it is a little strange, but they fundamentally understand why a man who is significantly below average height would do this to become slightly below average but within the fat part of the bell curve. And then they soon forget about it and never talk about it with you again. I think people would be more judgemental of those who are already pretty tall or get their arms/clavicles lengthened to perfect their proportions. That would probably raise more red flags imo.
-
Hello,
after visiting the forum after some years, I saw, that my LL experience is in the poor outcome category, which I think is not correct and should be upgraded to neutral outcome for sure.
True, I had a rough time with complications and non/delayed union problems, but at the end of the day:
- Gained around 6,5 cm
- The non/delayed union problems got solved. I can post recent x-rays if there is interest.
- In the left leg the bone came with time (Mobility, vitamins and magnet therapy probably also helped).
- Right leg was more tricky. I had non-union + broken nail there, but a surgery with nail replacement + bone craft worked. The doctor who helped me there with the bone craft + nail removal was Dr. Massimo Abela from Malta. I got the tip from a former Betz patient, who had similar problems which were also solved by him.
- Nail in the left leg was taken out by Dr. Jamal several years ago. Nail in the right leg still in, doesn't bother me, but I'd like to get it taken out soon to finish this chapter. Dr. Jamal offered to take it out in Kiev, which I seriously am considering, because health issurance here in my home country is probably not covering it.
- no pain in both legs since years
- Went back to sports in 2018
- Really, really was tempted by the idea of adding another ~5cm in tibias and going to around 1,77. Had already met for a consultation with Dr. Salameh and Dr. Schmidt in my home country.
- But at least for now decided against it, because after LL built a family and now have wife + sweet little kids :-)
All's well that ends well I guess…
Emanuel
-
good stuff emanuel. yes please post them xrays
did you tell your wife 'n kids about this procedure?
and what sports activities do you do?
-
This is a terrible post considering that there are way too many confounders that are not addressed. It would be much more valuable had these results been stratified according to the following:
(1) Age / weight / BMI
(2) Surgeon
(3) Technique / device
(4) Starting stats / flexibility
(5) Pre-operative vitamin D / calcium levels
(6) Comorbidities
etc....
To just flat out say "here is the raw number of how many patients were happy / sad, is poor science and not useful. Also, this is probably the worst place to sample considering that people who post on forums are generally going to be biased in one direction or another, so the sample size is
-
Posted this before and here it is again regarding tibia lengthening.
Dr Donghoon Lee who has followed up with over 400 CLL patients had this to say
From Walk6 diary
"I personally asked Dr. Lee what he thought about this (lengthening past 6 cm) and he has told me that from his experience in talking to former lengthening patients (2-3 years post recovery) those that only lengthened 5 cm recovered fully and their previous athleticism returned close to 100% to pre-LL levels. On the other hand, those who chose to lengthen between 6 and 7 centimeters recovered 100% in performing daily functions (walking, light jogging, etc), BUT only recovered about 60-70% of their pre-LL athleticism when engaging in serious sports/strenuous activities (full sprinting, jumping, basketball, rugby,etc..). Additionally, those that lengthened beyond 7 cm saw an ever greater decline in their previous athletic abilities.
In short, those who lengthen beyond 5 cm will not be able to recover all of their pre-LL athletic abilities because their muscles, nerves, tendons will be stretched well beyond their natural limits and will be permanently damaged. He used the rubber band analogy and Dr. Lee believes strongly in this. Once a rubber band (muscle) is stretched beyond its natural limit, even if its by only half a centimeter, then it will begin to tear and will forever lose its previous elasticity. The muscle's natural limit seems to be at 5 cm for many patients, though it can be higher or lower depending on the patient's initial tibia/femur length."
This is, however smooth brain bc there is significant cell proliferation at these tissues and they're not "rubber bands". At least purely physically. Modern medical technology exists and if pharmaceutical tech is integrated at recovery program swift recovery can be made. These are third world recovery timeframes