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[NotTall84]

I know this may seem like a morbid and counterproductive question, but I'm genuinely curious.

I've heard of the patient who died after surgery, really sad.

What other horrible cases exist?

[HateLAPELoveSTEM]

What can be thought as worse than death?

[NotTall84]

What can be thought as worse than death?

Long, painful suffering that has no end in sight...

But yes, death is up there. I'm wondering if there have been cases where a leg needs to be amputated or becomes paralyzed.

I know these are worst case scenarios, I am just morbidly curious I suppose.

[HateLAPELoveSTEM]

Long, painful suffering that has no end in sight...

But yes, death is up there. I'm wondering if there have been cases where a leg needs to be amputated or becomes paralyzed.

I know these are worst case scenarios, I am just morbidly curious I suppose.

It's sad but I gotta say this kind of cases you are mentioning here were already mentioned in one of Limb Lengthening Discussion's threads named 'Permanent Effects of LL' where so-called 'Long, painful suffering that has no end in sight' is actually 'permanent pain'. And as for amputations and paralysises were also mentioned induced from infections. Like external methods, if you or surgeons are not mindful enough of surgeric hygienes then it's possible to lead to infections so that you are likely to gotta get amputated or payalyzed.

[V21]

I was friendly with the guy who died. I have an audio of him 30 minutes prior to all that happened, saying he was feeling happy and "back to normal". Crazy crazy stuff.

[NotTall84]

I was friendly with the guy who died. I have an audio of him 30 minutes prior to all that happened, saying he was feeling happy and "back to normal". Crazy crazy stuff.

Dang. That's wild. I read that he was Muslim and was fasting for Ramadan? Probably not a good move. He didn't have to anyway. Islamic fasting isn't to be done by the sick or injured, they are supposed to eat and drink normally.

I'm not saying that killed him, but after a surgery like this, he needed proper nutrition.

[V21]

Dang. That's wild. I read that he was Muslim and was fasting for Ramadan? Probably not a good move. He didn't have to anyway. Islamic fasting isn't to be done by the sick or injured, they are supposed to eat and drink normally.

I'm not saying that killed him, but after a surgery like this, he needed proper nutrition.

That's total misinformation man. He was not Muslim, and he drank normally. The fasting stuff has been getting overblown, cause it's pretty convenient lol

[NotTall84]

That's total misinformation man. He was not Muslim, and he drank normally. The fasting stuff has been getting overblown, cause it's pretty convenient lol

I see. So he was perfectly healthy? I guess it scares me that a young guy can die like that.

[MakeMeTallAF]

Who is the guy who died?

[ReadRothbard]

Crazy+6 is probably the worst I've heard of.

[Medium Drink Of Water]

Who is the guy who died?

https://jezebel.com/stories-about-my-brother-1835651181

[V21]

https://jezebel.com/stories-about-my-brother-1835651181

That's the other guy. The recent one is from 4-5 months ago.

[anonymousfemale]

I wasn't going to share my story on this forum but I changed my mind. As a disclaimer, I will not be sharing my surgeon's name and will change details as needed to protect his identity. I greatly respect and 100% trust my surgeon and do not believe he in any way contributed to the development of this complication. It is also important to note that I am a physician and probably understood the risks of this surgery as well as anyone could. I underwent femur lengthening with precise in the US. I was on prophylactic dosing of Xaralto when this happened.

Here's what happened to me. I was about 1 week post-op and doing great. I had just started lengthening and could not have been happier. I live with my boyfriend and he had recently commented that all of a sudden it seemed like I was smiling all the time. I noted some new discomfort in my left leg and on exam realized I had significant swelling and blueish discoloration of my foot/toes which was not there an hour ago. I was home alone. Within several minutes I developed severe chest pain and chest tightness (like a belt around my lower chest). This pain was easily 100 times or 1000 times worse than the pain of the lengthening surgery and certainly was the worst pain I had felt in my life. I called 911 and told the dispatcher that I was quite certain I had a pulmonary embolism (PE) and I felt like I was going to die. EMS arrived and I was taken to my local ER less than 5 minutes from my home at the hospital where I work. I was pretty quickly diagnosed with a massive occlusive DVT and multiple pulmonary emboli. I was told I had the very early stages of "phlegmasia cerulea dolens" and potentially would require emergent thrombectomy. As a side note, I had no idea what phlegmasia cerulea dolens was and everyone just assumed since I was a doctor I knew what it was so I actually had no idea how bad things were until much later on. Ultimately I did have a thrombectomy and have had an excellent recovery thanks to the amazing surgeons who did everything in their power to achieve a good outcome. Physically I am doing well and I am getting stronger every day. Emotionally it has been a difficult experience but I really could not ask for more supportive friends, family, and colleagues.

I would also like to add that it is easy for us to find fault with the patient when a complication happens. We do this all the time in medicine ("oh that previously healthy young lady on ECMO due to COVID, she should have gotten her COVID vaccine, I'm vaccinated, that won't happen to me or someone I love"). I promise though that the patient has suffered enough. Multiple factors likely contributed to my DVT/PE some of which I could have controlled and some of which I had no control over. Everyone wants to find a reason why this happened and I'm not sure there is one reason. I've taken care of countless patients with PEs, I have had patients require ECMO (an intensive form of life support) due to PEs, I have had a patient lose limbs due to complications from ECMO required secondary to PEs, and I have had a patient die from a PE. But even if you know the risks you never imagine it will happen to you or just how scary it will be if it does.

I don't share this story to scare anyone. What happened to me is extremely rare and overall I still feel quite confident that limb lengthening with a good surgeon in a good hospital with access to quality follow-up care is a very safe procedure. I'm happy to answer any questions anyone has assuming I can do so in a way that protects both my identity and the identity of my surgeon.

[BelowTheMean]

I wasn't going to share my story on this forum[...]

Thanks for sharing. This type of story does scare me a little since it makes me think about how I could have died from a PE and no one would have known since I was lengthening alone. Even if it's statistically unlikely, it's not zero...

[TakingAction]

I wasn't going to share my story on this forum but I changed my mind. As a disclaimer, I will not be sharing my surgeon's name and will change details as needed to protect his identity. I greatly respect and 100% trust my surgeon and do not believe he in any way contributed to the development of this complication. It is also important to note that I am a physician and probably understood the risks of this surgery as well as anyone could. I underwent femur lengthening with precise in the US. I was on prophylactic dosing of Xaralto when this happened.

Here's what happened to me. I was about 1 week post-op and doing great. I had just started lengthening and could not have been happier. I live with my boyfriend and he had recently commented that all of a sudden it seemed like I was smiling all the time. I noted some new discomfort in my left leg and on exam realized I had significant swelling and blueish discoloration of my foot/toes which was not there an hour ago. I was home alone. Within several minutes I developed severe chest pain and chest tightness (like a belt around my lower chest). This pain was easily 100 times or 1000 times worse than the pain of the lengthening surgery and certainly was the worst pain I had felt in my life. I called 911 and told the dispatcher that I was quite certain I had a pulmonary embolism (PE) and I felt like I was going to die. EMS arrived and I was taken to my local ER less than 5 minutes from my home at the hospital where I work. I was pretty quickly diagnosed with a massive occlusive DVT and multiple pulmonary emboli. I was told I had the very early stages of "phlegmasia cerulea dolens" and potentially would require emergent thrombectomy. As a side note, I had no idea what phlegmasia cerulea dolens was and everyone just assumed since I was a doctor I knew what it was so I actually had no idea how bad things were until much later on. Ultimately I did have a thrombectomy and have had an excellent recovery thanks to the amazing surgeons who did everything in their power to achieve a good outcome. Physically I am doing well and I am getting stronger every day. Emotionally it has been a difficult experience but I really could not ask for more supportive friends, family, and colleagues.

I would also like to add that it is easy for us to find fault with the patient when a complication happens. We do this all the time in medicine ("oh that previously healthy young lady on ECMO due to COVID, she should have gotten her COVID vaccine, I'm vaccinated, that won't happen to me or someone I love"). I promise though that the patient has suffered enough. Multiple factors likely contributed to my DVT/PE some of which I could have controlled and some of which I had no control over. Everyone wants to find a reason why this happened and I'm not sure there is one reason. I've taken care of countless patients with PEs, I have had patients require ECMO (an intensive form of life support) due to PEs, I have had a patient lose limbs due to complications from ECMO required secondary to PEs, and I have had a patient die from a PE. But even if you know the risks you never imagine it will happen to you or just how scary it will be if it does.

I don't share this story to scare anyone. What happened to me is extremely rare and overall I still feel quite confident that limb lengthening with a good surgeon in a good hospital with access to quality follow-up care is a very safe procedure. I'm happy to answer any questions anyone has assuming I can do so in a way that protects both my identity and the identity of my surgeon.

Wow, now my fear came back even after I have already finished the lengthening phase (a week into the consolidation phase).
Personally, my worst LL experience is probably right after I passed out while I was trying to stand with a walker for the first time from the hospital bed. It was like the first time passing out in my life. I lost my consciousness for some seconds. I thought I died in a wheelchair as my whole body collapsed on the chair. After I reopened my eyes, multiple nurses rushed to my hospital room, tried to move me from the chair to my bed, and injected IV fluid to my arm. I was just glad that I got life back on that day.

[indication]

I wasn't going to share my story on this forum but I changed my mind. As a disclaimer, I will not be sharing my surgeon's name and will change details as needed to protect his identity. I greatly respect and 100% trust my surgeon and do not believe he in any way contributed to the development of this complication. It is also important to note that I am a physician and probably understood the risks of this surgery as well as anyone could. I underwent femur lengthening with precise in the US. I was on prophylactic dosing of Xaralto when this happened.

Here's what happened to me. I was about 1 week post-op and doing great. I had just started lengthening and could not have been happier. I live with my boyfriend and he had recently commented that all of a sudden it seemed like I was smiling all the time. I noted some new discomfort in my left leg and on exam realized I had significant swelling and blueish discoloration of my foot/toes which was not there an hour ago. I was home alone. Within several minutes I developed severe chest pain and chest tightness (like a belt around my lower chest). This pain was easily 100 times or 1000 times worse than the pain of the lengthening surgery and certainly was the worst pain I had felt in my life. I called 911 and told the dispatcher that I was quite certain I had a pulmonary embolism (PE) and I felt like I was going to die. EMS arrived and I was taken to my local ER less than 5 minutes from my home at the hospital where I work. I was pretty quickly diagnosed with a massive occlusive DVT and multiple pulmonary emboli. I was told I had the very early stages of "phlegmasia cerulea dolens" and potentially would require emergent thrombectomy. As a side note, I had no idea what phlegmasia cerulea dolens was and everyone just assumed since I was a doctor I knew what it was so I actually had no idea how bad things were until much later on. Ultimately I did have a thrombectomy and have had an excellent recovery thanks to the amazing surgeons who did everything in their power to achieve a good outcome. Physically I am doing well and I am getting stronger every day. Emotionally it has been a difficult experience but I really could not ask for more supportive friends, family, and colleagues.

I would also like to add that it is easy for us to find fault with the patient when a complication happens. We do this all the time in medicine ("oh that previously healthy young lady on ECMO due to COVID, she should have gotten her COVID vaccine, I'm vaccinated, that won't happen to me or someone I love"). I promise though that the patient has suffered enough. Multiple factors likely contributed to my DVT/PE some of which I could have controlled and some of which I had no control over. Everyone wants to find a reason why this happened and I'm not sure there is one reason. I've taken care of countless patients with PEs, I have had patients require ECMO (an intensive form of life support) due to PEs, I have had a patient lose limbs due to complications from ECMO required secondary to PEs, and I have had a patient die from a PE. But even if you know the risks you never imagine it will happen to you or just how scary it will be if it does.

I don't share this story to scare anyone. What happened to me is extremely rare and overall I still feel quite confident that limb lengthening with a good surgeon in a good hospital with access to quality follow-up care is a very safe procedure. I'm happy to answer any questions anyone has assuming I can do so in a way that protects both my identity and the identity of my surgeon.

Thank you for sharing your experience

To your knowledge what are the chances of a healthy young individual with no known health conditions developing PE? I have heard it is 1 in 1000.

Do you think doing unilateral lengthening would have reduced the risk of this significantly? I am no doctor but my understanding is with unilateral there are half as many blood clots on average and the body has a better chance of filtering them away even if DVT were to happen.

Also the part about ECMO causing limb loss is quite scary  I did not know that was possible. I had thought that if you survive PE then you are good to go.

PE is the most scary complication of this surgery by far. You are not out of woods for up 3 months at least. If doing unilateral reduces the risk of that significantly (I am not sure by how much) then I think more of us should consider that.

[ReadRothbard]

I wasn't going to share my story on this forum but I changed my mind. As a disclaimer, I will not be sharing my surgeon's name and will change details as needed to protect his identity. I greatly respect and 100% trust my surgeon and do not believe he in any way contributed to the development of this complication. It is also important to note that I am a physician and probably understood the risks of this surgery as well as anyone could. I underwent femur lengthening with precise in the US. I was on prophylactic dosing of Xaralto when this happened.

Here's what happened to me. I was about 1 week post-op and doing great. I had just started lengthening and could not have been happier. I live with my boyfriend and he had recently commented that all of a sudden it seemed like I was smiling all the time. I noted some new discomfort in my left leg and on exam realized I had significant swelling and blueish discoloration of my foot/toes which was not there an hour ago. I was home alone. Within several minutes I developed severe chest pain and chest tightness (like a belt around my lower chest). This pain was easily 100 times or 1000 times worse than the pain of the lengthening surgery and certainly was the worst pain I had felt in my life. I called 911 and told the dispatcher that I was quite certain I had a pulmonary embolism (PE) and I felt like I was going to die. EMS arrived and I was taken to my local ER less than 5 minutes from my home at the hospital where I work. I was pretty quickly diagnosed with a massive occlusive DVT and multiple pulmonary emboli. I was told I had the very early stages of "phlegmasia cerulea dolens" and potentially would require emergent thrombectomy. As a side note, I had no idea what phlegmasia cerulea dolens was and everyone just assumed since I was a doctor I knew what it was so I actually had no idea how bad things were until much later on. Ultimately I did have a thrombectomy and have had an excellent recovery thanks to the amazing surgeons who did everything in their power to achieve a good outcome. Physically I am doing well and I am getting stronger every day. Emotionally it has been a difficult experience but I really could not ask for more supportive friends, family, and colleagues.

I would also like to add that it is easy for us to find fault with the patient when a complication happens. We do this all the time in medicine ("oh that previously healthy young lady on ECMO due to COVID, she should have gotten her COVID vaccine, I'm vaccinated, that won't happen to me or someone I love"). I promise though that the patient has suffered enough. Multiple factors likely contributed to my DVT/PE some of which I could have controlled and some of which I had no control over. Everyone wants to find a reason why this happened and I'm not sure there is one reason. I've taken care of countless patients with PEs, I have had patients require ECMO (an intensive form of life support) due to PEs, I have had a patient lose limbs due to complications from ECMO required secondary to PEs, and I have had a patient die from a PE. But even if you know the risks you never imagine it will happen to you or just how scary it will be if it does.

I don't share this story to scare anyone. What happened to me is extremely rare and overall I still feel quite confident that limb lengthening with a good surgeon in a good hospital with access to quality follow-up care is a very safe procedure. I'm happy to answer any questions anyone has assuming I can do so in a way that protects both my identity and the identity of my surgeon.

It's good you got prompt emergency medical care. I fear that was the Guichet patient's unfortunate error.

[anonymousfemale]

Thank you for sharing your experience

To your knowledge what are the chances of a healthy young individual with no known health conditions developing PE? I have heard it is 1 in 1000.

Do you think doing unilateral lengthening would have reduced the risk of this significantly? I am no doctor but my understanding is with unilateral there are half as many blood clots on average and the body has a better chance of filtering them away even if DVT were to happen.

Also the part about ECMO causing limb loss is quite scary  I did not know that was possible. I had thought that if you survive PE then you are good to go.

PE is the most scary complication of this surgery by far. You are not out of woods for up 3 months at least. If doing unilateral reduces the risk of that significantly (I am not sure by how much) then I think more of us should consider that.

Your welcome. Honestly, I'm not sure the exact risk of PE and I'm not sure if the data is even out there at least for cosmetic limb lengthening. I'm also not sure of the answer to your question regarding unilateral vs bilateral lengthening.

I'm sorry I don't have any helpful answers for you. I guess what might be helpful for someone would be knowing if I would still go forward with the surgery knowing this would happen; however, I would survive, and I will likely have no significant long-term sequelae. The truth is that I'm not sure. I'm quite confident I will be very happy with the final result but I'm slowly realizing just what I put my friends, family, and colleagues through. 

[Masteryourlife]

Your welcome. Honestly, I'm not sure the exact risk of PE and I'm not sure if the data is even out there at least for cosmetic limb lengthening. I'm also not sure of the answer to your question regarding unilateral vs bilateral lengthening.

I'm sorry I don't have any helpful answers for you. I guess what might be helpful for someone would be knowing if I would still go forward with the surgery knowing this would happen; however, I would survive, and I will likely have no significant long-term sequelae. The truth is that I'm not sure. I'm quite confident I will be very happy with the final result but I'm slowly realizing just what I put my friends, family, and colleagues through.

Hi , thank you for sharing your experience.
If you don't mind, I would like to ask some questions .

Why didn't you use this forum for such a surgery ?

Why , if it's not his fault,you don't want to display the surgeon name ? [It would help to know if his claims are real when it comes to risks and complications for future patients who will consult with him .
Plenty of doctor here like dr.D, say bs and lie about bad cases , number of cases etc.
He also said , after a not-so-nornal patient asked ,that vision problems can happen with LL and that he saw it ( with his couple years of experience..when doctor from HSS never saw or heard about it between them or their colleagues.]

Do you think being a female higher the chances of this kind of complications since you are yourself in the medical field ? (Because of smaller bones n overall different body composition) .

What could you have done more , as you said you could have , to reduce the risk of this happening n what could have done the doctor !?