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[Tangled]

Hello everybody there. I’m a former LL patient. Don’t ask me who I am or who my doctor is. Don’t ask me when and where I got my procedure. I don’t want being attacked, I don’t want to attack anybody, and I don’t want anybody to get attacked. The only purpose of this post is sharing my feelings about my LL experience, an experience that I would describe as devastating at all levels.

Before taking an impulsive decision, consider if you are strong enough to endure the possible sequels of this procedure, both physical and psychological. Being wheelchairbounded is hard. If it lasts for a few months, as expected, you’re not entitled to complain (when we decide to get this surgery, we know that’s the price we have to pay if we want to become taller). There are some situations, however, when the crippling nightmare lasts longer than expected, and people around you start saying you will never recover. Of course, there are nasty people everywhere in life, and you can choose to ignore them, but, if you are in the middle of such a situation, it’s difficult to ignore them completely. Even if you trust your doctor 100%, in the bottom of your heart there is a voice that says: what if they are right? If you decide to undertake this adventure, be prepared for dealing with those nasty individuals, and their nasty opinions, and also with your own fears and doubts.

LL per se isn’t a walk in the park. If you get complications, be prepared to cope with the fact that you will become a monster. Yes, that’s the worst part of this experience. Everything good in you might die after going through such a nightmare. Both physically and psychologically. You must show an outstanding strength of mind to cope with the crippling ordeal, with the endless number of unscheduled surgeries, with the disfiguring scars… All these factors cause not only physical, but also emotional trauma that may lead to serious depressions and other problems.

If you get the short straw, be prepared to feel vulnerable as a child again. You may well be a succesful professional and a full grown up, but, after this, you will become dependent on people, both at a physical and a psychological level. If you get complications, you will need extra support from those around you… and they may not be ready for that. They will call you a needy monster. They may well betray or abandon you. The worst part is you’ll feel helpless because you’ll think they’re right: everything good in you died after this experience, and you have become a monster.  So, if you decide to do this, and things go sore, be prepared to be considered a worthless piece of crap by those around you, but, worst of all, by yourself.

[Great321]

I am very sorry about your experience and I hope everything will be fine again with time. Longtime physical pain and stress in general makes someone automatically depressed or bitter or else. The people who considered you as such things just showed their real face or were overwhelmed themselves in such a situation. They might not meant it really that way.

Thank you for sharing you're experience but you might save someone else's fate by just sharing a little bit more about your experience (like how much you lengthened on one or two segments and with which method)

[Microbe]

Yes I absolutely agree with your post! I'm a former internal bilateral femur patient and the whole LL experience was a physical and psychological burden, even despite the fact that my overall LL process was smooth, without any major complications during the procedure and a rather quick recovery. Days still felt tedious, drugs wore me down mentally/physically and don't get me started on being wheelchair/walker bound. I just had my rods removed two weeks ago and this has also got a good toll on me both and mentally and physically. I prefer not to tell anyone about my multiple surgeries because I don't really trust them (even my closest friends), I don't want to take the risk of them spreading this information to others behind my back, and just incase the relationship do become bitter, they can use this information against me and expose my former insecurities and make me appear weak. After all this torment, arduous, extremely expensive journey, I at 170 cm do not see any benefits of doing any further surgery to increase height, despite being still well below the average height in my current country that belongs in the top 5 tallest countries. I feel I can blend in well with the locals with a alot more confidence, to a point where height doesn't bother me too much. I've found happiness at that this height and the risk of further LL outweighs the benefits at this height. LL at/after 170cm sounds ridiculous to me now.

[Android]

So many questions, too bad we can't ask them. Best of luck on your recovery.

[jesus]

This is heartbreaking. I'm very sorry you suffered so much. I'm a lurker. I registered here just to support you. Nobody deserves being considered a monster for asking for love and support in difficult situations. Only criminals are 'monsters'. Not you. You're a human being in despair, an intelligent and sensitive human being in despair as you appear in this post. Be proud of your intelligence and your strength, and don't let those people drag you down to their lower spiritual level (or perhaps they are overwhelmed as well, idk). You have all my support. Best of luck and I'm here if you need anything. Remember Jesus loves you.

[Petite888]

Hi Tangled,

LL is a lonely world as most of us are too scared to reveal what we are doing to out nearest and dearest.  When things go wrong it feels as if the world is still moving but we have stopped, paralazed with nowhere to go.

I am so sorry this happened to you and I wish you all the best.

[YellowSpike]

To add some insight...while I still have to take the rods out (happening this fall) and I do have some right knee pain from time to time (although it has greatly improved and it's not nearly as bad when I do get it), my outcome is largely good. It achieved the goal I had in mind of getting rid of my height neurosis. I am a solid 5'8" at night (and I think my becoming something of a yogi has made me even a pinch taller, which I'm not complaining about), and while that's "short" to many people on here and in the world, I am very happy at this height.

However...despite my relative success and escaping from this mostly unscathed (especially compared to others on here)...I am "lonely" in the sense that I feel I can't hang out with certain old friends of mine. Luckily, I make new friends very easily and some of my lifelong close friends already know I had the surgery, so I still have them of course. Dating/women weren't much of an issue beforehand, and I have zero issues filling up my dance card now (I have model tier facial aesthetics, so 5'8" is totally fine for me). But sometimes I feel as though I am a "fraud" and sometimes I semi resent myself for doing this. 98% of the time I don't - I know I'd regret it if I hadn't done the surgery. I always wanted to be taller. So at the end of the day, I got what I wanted. But I sometimes feel as though people don't know the "real me" if that makes sense. But it's not something I think about too often.

Just wanted to give a different perspective. LL sucks. It sucks that a man's height is so important and it sucks that there's no easy way to change it. Even if you escape from this mostly unscathed the way I did (I can squat 315 lbs and deadlift 405 lbs post LL, both pain free), you might still have other "types" of regrets the way I occasionally do. But at the end of the day - going from 5'5" to 5'8" is really awesome

[fokid]

to genuinely short people, there is no doubt successful LL is beneficial. even with 6-9 months of disability, drugs, radiation, pain, it is definitely worth it.

however it is obviously not worth it if there are physical side effects. the brain can easily forget bad memories when in good circumstances. that's why happy people tend to forgive others easily. on the other hand if you have physical ailments after LL everything flips and all your anguish is amplified.

the problem is that even now it's not clear if LL is 'physically' safe to do or not. with such a minuscule number of people getting it and most of them being discreet about it, i doubt there will ever be enough data to conclude its safety profile.

[YellowSpike]

to genuinely short people, there is no doubt successful LL is beneficial. even with 6-9 months of disability, drugs, radiation, pain, it is definitely worth it.

however it is obviously not worth it if there are physical side effects. the brain can easily forget bad memories when in good circumstances. that's why happy people tend to forgive others easily. on the other hand if you have physical ailments after LL everything flips and all your anguish is amplified.

the problem is that even now it's not clear if LL is 'physically' safe to do or not. with such a minuscule number of people getting it and most of them being discreet about it, i doubt there will ever be enough data to conclude its safety profile.

Totally agree. I think LL is riskier than a lot of us are willing to admit. When we're in pain about being short and all the negative things that come with being a short man, we'll do anything to change our situation. Unfortunately, LL is probably the riskiest, most painful cosmetic procedure known to man. But it's the only way to get taller. It's a horrible catch 22. I'm glad I made it out mostly unscathed, but my occasional knee pain, for instance, bugs me sometimes.

[fokid]

also it's worth being wary about anything posted on the internet without proof. whether it is someone promoting a doctor, or someone creating a very scary picture of LL. especially people with no previous posts and no pictures.

i don't mean to point fingers at anyone, but it is always safer to make important decisions considering trustworthy data samples. whether it is to not do LL or to do LL.

[Android]

Unfortunately, LL is probably the riskiest, most painful cosmetic procedure known to man.

The saving grace with LL is that it's a complex procedure, requiring more skill and experience from doctors. Its arduous nature makes it a harder pill to swallow, especially for cosmetic lengthening patients.

The very popular Brazilian butt lift (BBL) is a comparatively simple procedure, and its demand has invited many unlicensed surgeons to perform it; the death rate is 1 in 3000 compared to 1 in 50,000 for other plastic surgeries. Much like how male masculinity is associated with taller stature, over 20,000 women annually are flocking to BBL due to societal pressure (and these numbers are only for the US). The relative low cost and quick recovery makes it an impulse buy; the promise of attaining the impossible bodies that celebrities showcase on social media is enticing for many younger women.

however it is obviously not worth it if there are physical side effects. the brain can easily forget bad memories when in good circumstances. that's why happy people tend to forgive others easily. on the other hand if you have physical ailments after LL everything flips and all your anguish is amplified.

Indeed, it's hindsight bias. Outcome has a profound impact on our memory.

[notatroll]

I also escaped from this unscathed (apart from knee pain and minor issues) but this got a toll on me psychologically. Many patients  I met suffered a lot. Some of my LL friend (successful business men and Ivy League trainees) couldn't help crying. Pain and psychological distress were so unbearable. The bravest patient I met was Musicmaker, with 10 surgeries and more piling up, and she kept active taking on hobbies but I could see sadness in her eyes and at night she used to cry like everybody else. LL is quite hard and not for everybody.

[Johnson1111]

I also escaped from this unscathed (apart from knee pain and minor issues) but this got a toll on me psychologically. Many patients  I met suffered a lot. Some of my LL friend (successful business men and Ivy League trainees) couldn't help crying. Pain and psychological distress were so unbearable. The bravest patient I met was Musicmaker, with 10 surgeries and more piling up, and she kept active taking on hobbies but I could see sadness in her eyes and at night she used to cry like everybody else. LL is quite hard and not for everybody.

What were some of the reasons? Being stagnant in life, lonely, helpless, questioning ones self etc? Those are what come to mind for me

[notatroll]

What were some of the reasons? Being stagnant in life, lonely, helpless, questioning ones self etc? Those are what come to mind for me

It's a hard pill to swallow. My doctor told me it would be easy but he lied. If I had known, I'd have never done it. I didn't get complications but the pain was so strong I couldn't imagine. The wheelchair makes you feel stagnant and useless. I used it for months but some patients have used it for years. Life as a cripple is sad. I don't know how those patients managed to keep suicidal thoughts away (one of them commited suicide though)

Also being alone in a foreign country... You can't count on your friends because they could use this against you if relationships become bitter (yes, Microbe) and other patients sometimes help but also they have their own personal dramas.

So you feel alone, stupid to have taken this decision, unattractive for women, ashamed of scars that show what you did. I'm also sad about my knee pain and fear of premature arthritis. I'll be a crippled old man at 40 and I didn't have complications. For patients who get complications things are much much much harder, so the OP deserves all my respect.

[patientprivacy]

I also escaped from this unscathed (apart from knee pain and minor issues) but this got a toll on me psychologically. Many patients  I met suffered a lot. Some of my LL friend (successful business men and Ivy League trainees) couldn't help crying. Pain and psychological distress were so unbearable. The bravest patient I met was Musicmaker, with 10 surgeries and more piling up, and she kept active taking on hobbies but I could see sadness in her eyes and at night she used to cry like everybody else. LL is quite hard and not for everybody.

Who are you? When did you have your surgery? Your speculative crap is full of holes. I'm 99.9% sure you haven't met the people you're mentioning. Even in the hypothetical case you were a real patient, your post is unacceptable. You would be violating your fellow patients' privacy by including references to their education, their distress, their hobbies or the number of surgeries they have had.   PLEASE, RESPECT PATIENT PRIVACY. You CAN'T use Tangle's tragedy as an excuse to play your broken record abut Dr M and his patients, including MM. It's morally disgusting.

[Johnson1111]

It's a hard pill to swallow. My doctor told me it would be easy but he lied. If I had known, I'd have never done it. I didn't get complications but the pain was so strong I couldn't imagine. The wheelchair makes you feel stagnant and useless. I used it for months but some patients have used it for years. Life as a cripple is sad. I don't know how those patients managed to keep suicidal thoughts away (one of them commited suicide though)

Also being alone in a foreign country... You can't count on your friends because they could use this against you if relationships become bitter (yes, Microbe) and other patients sometimes help but also they have their own personal dramas.

So you feel alone, stupid to have taken this decision, unattractive for women, ashamed of scars that show what you did. I'm also sad about my knee pain and fear of premature arthritis. I'll be a crippled old man at 40 and I didn't have complications. For patients who get complications things are much much much harder, so the OP deserves all my respect.

do you really feel that you will be a cripple at 40? Wow, this is an eye opener. So everything went well, there were no complications, you are out of your wheelchair and you still feel this negative? From my understanding the bones grow back even stronger after the break? I assume maybe it was the psychological feeling of thinking you might never heal or walk again. Could you elaborate a little more if it is not too much to ask?

[notatroll]

do you really feel that you will be a cripple at 40? Wow, this is an eye opener. So everything went well, there were no complications, you are out of your wheelchair and you still feel this negative? From my understanding the bones grow back even stronger after the break? I assume maybe it was the psychological feeling of thinking you might never heal or walk again. Could you elaborate a little more if it is not too much to ask?

I'm out of my wheelchair but I have knee pain. Joints are never the same as before. Premature arthritis is one of the greatest real consequences of CLL.

I'm pretty sure LL guarantees or exponentially increases the chance of early arthritis in the knees and hips as you get older. It's a gamble / cost vs benefit analysis you make with your body.

Hi again, Microbe. I hope the physio and orthotics help, hopefully get rid of your pain!

Can you talk a bit more about that pain? In a scale of 1 to 10, how bad is the pain? Is it worse during certain times of the day, or in certain positions? Is it constant, ever-present, only varying in the scale of 1~10? And maybe in a more complex question: how bad is it on you, psychologically?

By the way, I believe premature arthritis is one of the greatest real consequences of CLL, but it doesn't need to necessarily happen. I'm hoping all ends the best in your case.

Thanks again, Microbe.

[patientprivacy]

Are you a M.D.? Are the people you're quoting M.D.s? This is an example of forum speculative bullcrap. You should look for more serious sources.

[Johnson1111]

I'm out of my wheelchair but I have knee pain. Joints are never the same as before. Premature arthritis is one of the greatest real consequences of CLL.

how much did you lengthen and how tall were you beginning? Did you go over 20%? Were your IT bands partially released? Just wondering if these may have contributed, or maybe the risks are there regardless?

[notatroll]

how much did you lengthen and how tall were you beginning? Did you go over 20%? Were your IT bands partially released? Just wondering if these may have contributed, or maybe the risks are there regardless?

I was 5'65. I'm 5'8-5'9 now. I think no more than 20%. I was cautious. My IT bands were partially released. The risk of arthritis is still there if the nail is introduced by the knee.

[Johnson1111]

I was 5'65. I'm 5'8-5'9 now. I think no more than 20%. I was cautious. My IT bands were partially released. The risk of arthritis is still there if the nail is introduced by the knee.

you dont know how tall you are after lengthening?

[notatroll]

When I finished LL I was 5'9. My height has decreased now. 5'85 or 5'8 depending on the day 

[Great321]

notatroll: did you lengthen on only one segment or both tibia and femur? Thank you very much for answering!

 

[notatroll]

Only femur

[myloginacct]

Are you a M.D.? Are the people you're quoting M.D.s? This is an example of forum speculative bullcrap. You should look for more serious sources.

I got to this thread late, but I've been linking this everywhere I can:

https://www.ncbi.nlm.nih.gov/pubmed/26398436

BACKGROUND: When individuals with asymmetric lower extremities present for evaluation of limb-length inequality, correction can occur at the tibia, femur, or in both bones; however, there are limited data available to justify either technique. The aim of this study is to examine the normal ratio of tibia length/femur length (T/F), and to explore the relationship between T/F ratio and osteoarthritis of the spine, hips, and knees.

RESULTS: The average ratio of T/F was 0.80±0.03. There was a strong correlation between age and arthritis at all sites, with standardized β ranging from 0.44 to 0.57 (P<0.0005 for all). There was a significant correlation between increasing T/F and hip arthritis (standardized β=0.08, P=0.006), and knee arthritis (standardized β=0.08, P=0.008).

CLINICAL RELEVANCE: This is the first study to report long-term consequences of lower extremity segment disproportion.

A lot of what surrounds CLL is troubled by what seems to have gone on the old forums. No one read the published papers about distraction osteogenesis, everyone lengthened more than 15% of their initial bone length, went to doctors later found to hold no medical degrees that could qualify them as orthopedic surgeons or even orthopedists (cases in China and India), etc.

This is also all not to say CLL isn't the most intensive and dangerous cosmetic procedure there is. Or that I'm giving medical advice. You're completely right; do your own research (use researchgate, pubmed, etc), consult with local orthopedic surgeons, and don't take all that you read online as truth (use your critical thinking).

To add some insight...while I still have to take the rods out (happening this fall) and I do have some right knee pain from time to time (although it has greatly improved and it's not nearly as bad when I do get it), my outcome is largely good. It achieved the goal I had in mind of getting rid of my height neurosis. I am a solid 5'8" at night (and I think my becoming something of a yogi has made me even a pinch taller, which I'm not complaining about), and while that's "short" to many people on here and in the world, I am very happy at this height.

However...despite my relative success and escaping from this mostly unscathed (especially compared to others on here)...I am "lonely" in the sense that I feel I can't hang out with certain old friends of mine. Luckily, I make new friends very easily and some of my lifelong close friends already know I had the surgery, so I still have them of course. Dating/women weren't much of an issue beforehand, and I have zero issues filling up my dance card now (I have model tier facial aesthetics, so 5'8" is totally fine for me). But sometimes I feel as though I am a "fraud" and sometimes I semi resent myself for doing this. 98% of the time I don't - I know I'd regret it if I hadn't done the surgery. I always wanted to be taller. So at the end of the day, I got what I wanted. But I sometimes feel as though people don't know the "real me" if that makes sense. But it's not something I think about too often.

Just wanted to give a different perspective. LL sucks. It sucks that a man's height is so important and it sucks that there's no easy way to change it. Even if you escape from this mostly unscathed the way I did (I can squat 315 lbs and deadlift 405 lbs post LL, both pain free), you might still have other "types" of regrets the way I occasionally do. But at the end of the day - going from 5'5" to 5'8" is really awesome.

That's the other problem in LL. You are spending tens of thousands of dollars - most people want to get the "most bang for their buck" and try to go for the maximum amount of lengthening possible.

You can still get serious complications even with minuscule amounts, don't be fooled. But they do seem to increase the more you lengthen.

[fokid]

In circumstances where one bone is to be overlengthened relative to the other, bias should be toward overlengthening the femur.

https://www.ncbi.nlm.nih.gov/pubmed/26398436

this paper does not correlate high femur /tibia ratio and risk of arthritis. it only correlates high tibia/femur ratio and arthritis.

[myloginacct]

https://www.ncbi.nlm.nih.gov/pubmed/26398436

this paper does not correlate high femur /tibia ratio and risk of arthritis. it only correlates high tibia/femur ratio and arthritis.

Yes, I know (we were talking about CLL/LL in general). But does provide a figure for a standard T/F ratio and its standard deviation.

Everyone doing LL should try to maintain that ratio, and if you're lengthening only one segment, the bias should be towards the femurs in the case of preventing arthritis, as the paper says.

However, a lack of present data doesn't mean overlengthening the femurs (and all the traumatic procedures involving the nails) doesn't have consequences of its own. To me, it's obvious that it does just from anecdotal evidence, the sheer amount of lengthening done, and the sample size of femur patients in the forum. Every LL vet says you're never going to be the same again after LL (and I'm also not saying recovery is not possible). Even ones with admittedly good outcomes, like YellowSpike, still mentioned knee pain from time to time in this thread. We can only hope these small pains in the admittedly good outcomes of LL stay as just that in the long term.

There's limited data in the world of CLL. I still hold onto the opinion that you make a choice between proportions and height, and (at the good outcome level) small aches and small inconveniences and height. This is my personal, non-medical, opinion. Be sure to discuss these issues with long-term orthopedic surgeons who work with LL (e.g. Paley) if they're a concern to you.

[YellowSpike]

Yes, I know (we were talking about CLL/LL in general). But does provide a figure for a standard T/F ratio and its standard deviation.

Everyone doing LL should try to maintain that ratio, and if you're lengthening only one segment, the bias should be towards the femurs in the case of preventing arthritis, as the paper says.

However, a lack of present data doesn't mean overlengthening the femurs (and all the traumatic procedures involving the nails) doesn't have consequences of its own. To me, it's obvious that it does just from anecdotal evidence, the sheer amount of lengthening done, and the sample size of femur patients in the forum. Every LL vet says you're never going to be the same again after LL (and I'm also not saying recovery is not possible). Even ones with admittedly good outcomes, like YellowSpike, still mentioned knee pain from time to time in this thread. We can only hope these small pains in the admittedly good outcomes of LL stay as just that in the long term.

There's limited data in the world of CLL. I still hold onto the opinion that you make a choice between proportions and height, and (at the good outcome level) small aches and small inconveniences and height. This is my personal, non-medical, opinion. Be sure to discuss these issues with long-term orthopedic surgeons who work with LL (e.g. Paley) if they're a concern to you.

Well Dr. R is insisting that my remaining knee pain is because I still have the rods in, and on my right leg (the leg where I get occasional knee pain), the rod is a bit "tilted" inside my bone. I'm hoping to God that removing the rod fixes the issue once and for all, but in a way, it almost seems too easy.

I feel like the limit for femurs should be 6.5cm max. I did 7cm, and I guess an extra .5cm wouldn't have killed me, but who knows.

For the most part, I am happy with the outcome and just want the rods out now (happening in the fall).

[Android]

Well Dr. R is insisting that my remaining knee pain is because I still have the rods in, and on my right leg (the leg where I get occasional knee pain), the rod is a bit "tilted" inside my bone. I'm hoping to God that removing the rod fixes the issue once and for all, but in a way, it almost seems too easy.

IM nail removal has shown to significantly reduce knee pain in tibial lengthening patients, so maybe it's true for some femur patients as well.

[Life]

Femur retrograde approach is bad for the knee. I've met many people with knee issues.

[notatroll]

Femur retrograde approach is bad for the knee. I've met many people with knee issues.

I had retrograde.