Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Discussions => Topic started by: Want-3-inches on April 09, 2021, 09:30:43 PM
-
https://youtu.be/JGXz75pJc5o?t=5085
At the 1:24:45 mark a question is asked about what happens to muscles after 10% of lengthening
The audio is quite bad so I can't quite hear the answer. He does say the IT band heals up. But the muscles "don't necessarily regenerate per se and only stretch". After that he goes on to say something about "electromyograph", "electrical stimulation", "contractile units" which I could not hear properly. I think the gist is that even though there are negative changes to the muscles, there are no changes clinically.
Can anyone else give it a listen and tell me? I want to know what those negative changes exactly are and whether they might cause long term problems.
-
bump. anyone?
-
Well, the truth is, if uh the IT band when we’re doing a femoral lengthening it does regrow, so it heals and then slowly, slowly stretches. However, the muscles just stretch. They do not necessarily regenerate per se. We know that, if you analyze with an electromyogram, the muscles… the electromyogram being the nerve conduction… the activity within the nerves that go into the muscle, there are signs after lengthening of denervation. That can be decreased by using e-stim, and it recruits sarcomere used which are the contractile units. Now clinically, it does not cause any functional impairment. Now a lot of people ask me can I remain a high level athlete…..
https://pubmed.ncbi.nlm.nih.gov/2298769/
-
Well, the truth is, if uh the IT band when we’re doing a femoral lengthening it does regrow, so it heals and then slowly, slowly stretches. However, the muscles just stretch. They do not necessarily regenerate per se. We know that, if you analyze with an electromyogram, the muscles… the electromyogram being the nerve conduction… the activity within the nerves that go into the muscle, there are signs after lengthening of denervation. That can be decreased by using e-stim, and it recruits sarcomere used which are the contractile units. Now clinically, it does not cause any functional impairment. Now a lot of people ask me can I remain a high level athlete…..
https://pubmed.ncbi.nlm.nih.gov/2298769/
You are a hero Serilium!
So he stops with the muscles at "they just stretch" and do not "regenerate per se".
And then he goes to explain how nerves also become worse in a way and that it's possible to reduce that by using "e-stim" but I don't know why it's not used in practice then.
It's puzzling how this question is not asked more often by us PATIENTS. Most people ask questions like how much length, how much does it cost, how soon can I work again, what are the complications, but the unique thing about this surgery is the stretching. Patients need to be more curious about that.
It also puzzles me to this day how they don't make people sign all this on the informed consent form. If you see the informed consent form, it's made to make you think that things might go wrong and cause complications but the truth is, it has been studied that there will be some degeneration which a patient needs to be aware of. In some sense, patients need to be made aware that this is an experiment at some level.
But kudos to Dr. Assayag for being completely honest. He seems like a very genuine doctor.
-
Hello Want-3-inches,
I will ask to my doctor about this video. Because he had told to me that all the soft tissues will get regenerated.
cheers,
sergio
-
Most doctors shy away from real questions and call you neurotic because they are not ones under the knife
I have been asking a genuine question to all but no one answers
I find it lot harder to breathe now but I was told my energy levels are low.
Which I don’t doubt. But I know my body too. I said if I am 7 cm taller wont my body take longer to pump blood to it’s organs compared to before and yes maybe I’m healthy now but what about future.
My uncles who are very tall have issues with clots all time.
Taller people naturally are built with larger organs for that matter.
What about us limb lengtheners ? How do our organs adjust to this new height because I surely can’t believe that my blood flow would be same post lengthening
-
Most doctors shy away from real questions and call you neurotic because they are not ones under the knife
I have been asking a genuine question to all but no one answers
I find it lot harder to breathe now but I was told my energy levels are low.
Which I don’t doubt. But I know my body too. I said if I am 7 cm taller wont my body take longer to pump blood to it’s organs compared to before and yes maybe I’m healthy now but what about future.
My uncles who are very tall have issues with clots all time.
Taller people naturally are built with larger organs for that matter.
What about us limb lengtheners ? How do our organs adjust to this new height because I surely can’t believe that my blood flow would be same post lengthening
Hey Ahd1978,
I am sorry to hear that you are still facing difficulties of the breathing. Did you get all the diagnostics tests performed? If you are not feeling the satisfaction please ask to the doctors for more tests. But finally you will have to listen to the doctors about why you are feeling this way. If no diagnostic tests are showing why you are having the breathing difficulty and the oximeter shows the good readings then you should have to believe you are severely anxious.
If the body is 7cm longer yes it would be harder for the heart to pump the blood to all the organs. But shouldn't the same thing happen when a skinny guy puts on the muscles through extreme body building? There are people who put on 15kg of weight after body building and they become more healthy after that. So I think the amount of new tissues added should not cause serious problems.
I am more concerned if the blood vessels are getting damaged from the lengthening and can carry only lesser amount of blood after the lengthening. But that should reduce the circulation in your legs but not to the other organs.
sergio
-
Thanks Sergio
I have been adamant with local team of dr. Paley in poland and due to that only when I did blood tests on my own accord I realize my dimmer levels were very high including liver enzymes.
Apparently both are high post surgery is what local docs say.
I should have had my vitals before and after surgery.
I do agree with you I may have little anxiety but I think after escaping fat embolism and waking up with tubes in your mouth as surprise and later having an irregular heartbeat I am being extra precautious
With regards to growing muscle hmmm I agree it’s healthier
But what I’m concerned with is time now needed for blood to travel upstream. I just want a doc to answer this honestly. Because if it is I would stop at 7 cm end of this month and call it a day. If not I would push last 8 cm
I am doing breathing excercises daily and have reduced distraction to .5mm which also helps.
Maybe it’s just my energy levels. I am 43 years old too. So not youngest of all limb lengtheners.
My breathing stays heavy only 30 min during distraction after that it regains its strength.
When I ask my doc paley he says clarify with local docs in poland. They will answer your blood and other issues.
So I have paid 100k usd for surgery where I won’t be seeing my doc till end of distraction if he comes back to poland and till then I am dealing with his local docs in poland. Had I known that I would have done it only in Florida
-
People in Florida pay the 100k for Paley and still end up never seeing him at all- sometimes not even for consultation.. You pay for Robbins
-
Well atleast robbins is more senior
I am not discarding local polish docs at his institute but with patient who gone through fat embolism scare a little bit of attention would be nice.
He does reply on emails though. But I’m always scared to ask him for anything.
Since I am doing this in private I can’t even share with my family.
I will battle this out. That’s why I have reached out to forum with these questions.
My initial 5 cm didn’t have any breathing issues. That’s why I’m thinking is new height which is now almost 6 cm affecting my breathing and changing my dynamics.
My flexion and all r tops so far. Even physios say recovery is great. So they are surprised with my dimmer levels or heavy breathing.
What I have found is that fat embolism or any kind of trauma can affect heart muscles
Simplest way is when I don next blood test I’m checking for troponin levels which would show if there is any damage to heart. If none one thing ruled out and maybe it’s just my energy levels being low and lack of cardio like I had pre surgery
We shall figure this out.
In meantime if you guys can get more information on dynamics of organs post cll would be great
Thanks
-
i hope u get through this mr. ahd1978 and recover from your set back 💪💪💪
-
I'm afraid a lot of this stuff like impact on organs and is it more effort to pump blood upstream or not, might simply not be studied. I can't even find conclusive research on how the lengthened soft tissues are different or similar to healthy soft tissue. Impact of other organs is probably a less important study.
But I largely agree with redwedding that as far as other organs are concerned, growing taller is similar to growing bigger through working out and eating a lot. At the end of the day the organs have to work harder to maintain more cells in the body.
If you are concerned about your health or have to decide on your lengthening goals, you can talk to one of several good doctors who do paid video consultations. Some I know are Dr Giotikas, Dr Parihar, Dr Donghoon, Dr Assayag, Dr Debiparshad. I think these surgeons know the theoretical stuff. But it's best you inform them that the intention of your consultation is to partially ease your mind and that you are not a prospective patient of theirs.
-
Most doctors shy away from real questions and call you neurotic because they are not ones under the knife
I have been asking a genuine question to all but no one answers
I find it lot harder to breathe now but I was told my energy levels are low.
Which I don’t doubt. But I know my body too. I said if I am 7 cm taller wont my body take longer to pump blood to it’s organs compared to before and yes maybe I’m healthy now but what about future.
My uncles who are very tall have issues with clots all time.
Taller people naturally are built with larger organs for that matter.
What about us limb lengtheners ? How do our organs adjust to this new height because I surely can’t believe that my blood flow would be same post lengthening
What about if you become 20kg fater. Isn't that a bigger body?
Much more than just gaining 7cm.
Your blod flow will be the same of course or the difference would be clinically non significant.
Also I don't have any trouble breathing after LL but yes, even walking is harder than before so I am geting tired easier of course.
Also, I think that muscles regenerates and new cells are created from LL and the muscles are not just stretched. But I am not sure. I think that is is very hard though for skin, nerves, muscles etc to stretch that much .
-
Also, I think that muscles regenerates and new cells are created from LL and the muscles are not just stretched. But I am not sure. I think that is is very hard though for skin, nerves, muscles etc to stretch that much .
Did you do the surgery without confirming this with your surgeon?
-
Very interesting topic, would it be safe to assume that the more you lengthen the long term risks of blood clots increase? So someone who does 14cm in two stages is a greater risk than a 8 cm lengthening or does it not work that way?
-
It is definitely an interesting topic.
I remember watching a YouTube video of Dr. Paley about a year ago (which also had bad sound for some reason) where he discussed some of these lengthening details. Specifically he talked about what he thinks the future of LL will bring. Here he mentioned a new technology that would lengthen more slowly but continuously. At the moment (correct me if I am wrong) the lengthening occurs like 3 times a day to typically 0.81 mm total. The problem with this is that the soft tissue experiences a short burst of very high pressure when the lengthening is increased in one step like this.
Paley mentioned machine learning being used from large datasets that would automatically find the optimal lengthening steps over time. When we grow naturally as children and teenagers the body does not make one large lengthening step of ~0.3 mm in one second, but it is more gradual.
I am wondering whether this large sudden pressure increase damages the soft tissues (muscles, nerves, arteries etc) and causes the degeneration mentioned in your video and what other LL’ers have experienced.
-
It is definitely an interesting topic.
I remember watching a YouTube video of Dr. Paley about a year ago (which also had bad sound for some reason) where he discussed some of these lengthening details. Specifically he talked about what he thinks the future of LL will bring. Here he mentioned a new technology that would lengthen more slowly but continuously. At the moment (correct me if I am wrong) the lengthening occurs like 3 times a day to typically 0.81 mm total. The problem with this is that the soft tissue experiences a short burst of very high pressure when the lengthening is increased in one step like this.
Paley mentioned machine learning being used from large datasets that would automatically find the optimal lengthening steps over time. When we grow naturally as children and teenagers the body does not make one large lengthening step of ~0.3 mm in one second, but it is more gradual.
I am wondering whether this large sudden pressure increase damages the soft tissues (muscles, nerves, arteries etc) and causes the degeneration mentioned in your video and what other LL’ers have experienced.
I don't know if it's because 0.33mm at once is dangerous or 1mm a day is dangerous no matter how gradually performed.
We should go with what technology we have today. Anybody getting surgery should inquire about what the effects are on the body, particularly soft tissues.
Even Cyborg4life an expert in this topic, in the video laughs after the question with something like "of course it's not stretching it's distraction histogenesis" and then Dr Assayag honestly corrects him soon after. Respect to Dr Assayag.
It's surprising even many who take the plunge of this procedure still have lingering doubts on their minds. It's best to understand what the unknowns are become comfortable with them if you're doing this.
-
Hi guys
I may be 43 but I am an avid swimmer, tennis and soccer player since I was very young and have always been fit.
When I came out of fat embolism I wasn’t scared but being more preventive for next steps.
I continued for 35 days for 1mm a day and then I realised screw all this I’m going to listen to body.
I reduced distraction myself to .75mm and continued and till 5 cm it was lot better for body but as soon as I touched 5,5 I stopped and brought it down to .5 mm. All by myself because of scare with dimmer levels being high and irregular heartbeat.
I believe one has to listen to their body. Had I not done that I would be in severe pain now.
Now it’s not nerves as they have started to behave with lower distraction fatigue is lot better and I am basically brisk walking as tightness is down by 70 percent. Even physio at paleys in poland is shocked.
So we live in our own bodies. Our docs don’t. For them we are just a number and I have realised that so I am not expecting much from them.
For them it is simple every patient adds to their portfolio of experiences and further corrections for future.
For example I was shocked that I was only doing x rays post surgery even after fat embolism scare.
I told doc I shall pay for my own blood tests but every 2 weeks I want my blood monitored. For troponin level first to check of any heart damage or changes with distraction.
Secondly dimmer levels as if you say they r high post surgery I respect and believe that. However it should only be like that for 6 weeks and then levels should drop.
Why with such an expensive surgery are blood tests not part of protocol
Look at number of dvt or pe cases.
So going forward I am doing breathing excercises and seeing how my heart is adjusting to this new height and will decide at around 7 cm. last thing I want is one day with age that dvt is my new friend and I have to take these stinking injections of heparin which I have to take 2 now and have left scabs all over my stomach. Look like a junkie.
I have also asked victor from cyborg that I would like to get his new data but to please ask doctors about effects on organs with new height.
Before I was doing this quietly but my friend who is undergoing this surgery in June suggested I share my experiences with all so the pool of experiences and knowledge grows
I am not agaisnt this surgery and new height is awesome.
But if I am going to breathe like a grunting pig in few years no thank you
-
I have also asked victor from cyborg that I would like to get his new data but to please ask doctors about effects on organs with new height.
You can pay for his paid program and have better chances of an answer. He has done a lot for the community so far but I think he is now monetising it (nothing wrong with it) so you might have a better chance getting your concerns cleared. It costs $100 I think. He says he will also help you with post surgery recovery if you buy the program.
-
Yes I have decided to buy it and he helped me in making final decision to go with paley too as a doctor for LL.
Well I have recieved reply from him and he would be asking doctors same to clarify further.
I have also told him to request docs either to charge extra but ensure blood tests are mandatory during distraction for all patients and during discharge to ensure all vitals come clear before sending one home.
Attaching his reply here towards my question
I don't, however, believe getting taller will affect your blood flow. The cool thing about the body's vascularization is that it can reroute and adapt to new situations to keep you alive regardless of the stimulus or situations. Whether that means creating new capillaries to engorge your new legs with blood or ensuring you properly oxygenate your upper body, I would say that perhaps it will take some time after distraction to feel more normal but I would like to keep on top of this to ensure you're okay.
Victor
Hope this helps
-
Yes I have decided to buy it and he helped me in making final decision to go with paley too as a doctor for LL.
Well I have recieved reply from him and he would be asking doctors same to clarify further.
I have also told him to request docs either to charge extra but ensure blood tests are mandatory during distraction for all patients and during discharge to ensure all vitals come clear before sending one home.
Attaching his reply here towards my question
I don't, however, believe getting taller will affect your blood flow. The cool thing about the body's vascularization is that it can reroute and adapt to new situations to keep you alive regardless of the stimulus or situations. Whether that means creating new capillaries to engorge your new legs with blood or ensuring you properly oxygenate your upper body, I would say that perhaps it will take some time after distraction to feel more normal but I would like to keep on top of this to ensure you're okay.
Victor
Hope this helps
Good to hear this. His response seems awesome and I hope it's true and what the doctors said :)
If you get a chance, please also ask him about this thread (how muscles, vessels and nerves respond to lengthening considering what Dr Assayag said in the above video).
As for blood tests, yeah I think it's a good idea. But I guess most patients don't have problems and so maybe they have decided it's not necessary. But for someone like you who had fat embolism it would be more necessary I think.
-
Thanks surely would ask him
Also getting the beta with all necessary information.
As for blood tests it’s not just for fat embolism but as number of patients are in creasing so are complications.
The bloods also are good to see vitals and dimmer levels which can show elevated levels during clots. Atleast till distraction phase
-
Razal was kind enough to ask Dr Assayag this question and Dr Assayag was kind enough to answer it.
https://www.youtube.com/watch?v=5CvTTD_OjkA
- He says there is both regeneration and stretching.
- Nerves, he said theoretically deteriorate he said.
- But clinically patients seem to fine functionally.
- He did not specifically address blood vessels.
- But generally all soft tissues have regeneration and stretching. He did not say how much of each.
All in all, it seems like clinical observation is the primary way in which doctors think this procedure is safe to perform.
I guess anyone who plans to do this should dedicate their 100% to staying fit (eating and exercising right) so that even if there are theoretical deteriorations you will compensate for that by doing everything else right.
-
I feel like LL doctors are strangely optimistic and vague about soft tissue degeneration.
There are people on this forum who legitimately believe they can regain 90-100% athleticism after 8 cm lengthening...
The truth is you will be lucky to ever play sports again, even on the lowest level possible. The fact that doctors aren't very clear and explicit on this matter sets off a lot of alarm bells for me personally. You are stretching your muscle, nerve and arteries an insane amount about a very small origin point, at like 1-2 mm a day for 60-40 days in a row, with no way for the soft tissue to release the pressure at any point.
If you can go for a walk with your family and friends, go on a bike ride once in a while and walk up stairs after that; it is the max you can hope for post-lengthening. I am not saying it is not worth it to lengthen +5 cm, but you should be aware of the permanent trade off in athleticism.
-
Ok guys I have news for all
1. My breathing being heavier I have no idea the reason for it. Howeve when I was in ICU at he cardiologist ran many tests to see if there was any heart damage the answer was confirmed by troponin level tests in blood which came normal. Troponin level is something that tells you of there is damage to heart.
2. The amount of pain killers I took did affect my stomach lining and caused GERD. This is an issue that comes for people late 30s. It’s from years of travel food in restaurants and bad life style. So now I am on GERD medicine as it come sometimes cause acid to enter lungs.
3. Same time I will be doing ultrasound and ecg this week to rule out again higher dimmer levels or any chances of clot.
4. I am reaching 7 cm distraction end of month and will then decide.
5. With regards to changes in long run. This is answer I got from main guy PALEY poland. He said to analyze this one should have ecg and ultrasound before and after surgery to see what data shows. Unfortunately no one has done that research yet but all adapts to changes but it would be good research to know. Also that taller people have lower BP.
Paley himself told me vessels and all is rubbish and don’t read stuff on internet.
So real answer is no one knows truly the long term effects
It’s like I mentioned before when I did my ACL younger was great. Now as I am aging I can feel the difference.
Hence I believe moderation is key but doing crazy numbers like 14 and 16 cm I would be petrified.
-
Ok guys I have news for all
1. My breathing being heavier I have no idea the reason for it. Howeve when I was in ICU at he cardiologist ran many tests to see if there was any heart damage the answer was confirmed by troponin level tests in blood which came normal. Troponin level is something that tells you of there is damage to heart.
2. The amount of pain killers I took did affect my stomach lining and caused GERD. This is an issue that comes for people late 30s. It’s from years of travel food in restaurants and bad life style. So now I am on GERD medicine as it come sometimes cause acid to enter lungs.
3. Same time I will be doing ultrasound and ecg this week to rule out again higher dimmer levels or any chances of clot.
4. I am reaching 7 cm distraction end of month and will then decide.
5. With regards to changes in long run. This is answer I got from main guy PALEY poland. He said to analyze this one should have ecg and ultrasound before and after surgery to see what data shows. Unfortunately no one has done that research yet but all adapts to changes but it would be good research to know. Also that taller people have lower BP.
Paley himself told me vessels and all is rubbish and don’t read stuff on internet.
So real answer is no one knows truly the long term effects
It’s like I mentioned before when I did my ACL younger was great. Now as I am aging I can feel the difference.
Hence I believe moderation is key but doing crazy numbers like 14 and 16 cm I would be petrified.
hey you have had Pulmonary embolism right? May this be the reason for your breathing problems?
-
Hey I had minor complication with fat embolism during surgery as per PALEY
Later they ran tests and I never felt heavy breathing till 6 cm of lengthening.
Since then I have had high dimmer levels which doc says is very normal after such heavy surgery as body is repairing itself.
I will do ultrasound this week and ecg to check all
But no I didn’t have PE
-
I feel like LL doctors are strangely optimistic and vague about soft tissue degeneration.
There are people on this forum who legitimately believe they can regain 90-100% athleticism after 8 cm lengthening...
The truth is you will be lucky to ever play sports again, even on the lowest level possible. The fact that doctors aren't very clear and explicit on this matter sets off a lot of alarm bells for me personally. You are stretching your muscle, nerve and arteries an insane amount about a very small origin point, at like 1-2 mm a day for 60-40 days in a row, with no way for the soft tissue to release the pressure at any point.
If you can go for a walk with your family and friends, go on a bike ride once in a while and walk up stairs after that; it is the max you can hope for post-lengthening. I am not saying it is not worth it to lengthen +5 cm, but you should be aware of the permanent trade off in athleticism.
At least in the short term most people recover much more than that. There are plenty of examples of people recovering more than that. It's just the long term impact that no one knows about and don't seem to be working on also.
-
Just to bump this thread a bit, https://www.newyorker.com/magazine/2021/05/10/persuading-the-body-to-regenerate-its-limbs
This is a cool article on whether we may be able to regenerate limbs in the future. Theoretically even if our legs do get fked up, if we live long enough we might be able to cut them off and regrow them in a natural state. Who knows but I'm optimistic either way that we will have technology to fix any issues we have.
-
Well, what do make impossible growing after some age? The bones growth plates. Some grew until 23years, some until 18.. But it is all about the bones growth plates. If you are thin and you star to eat well and go to the gym, after a while, your muscles will be bigger. If you dou steroids, your muscles will be so much bigger. Your skin, nerves and muscles have the capacity to grow and shrink. The human body is amazing.
So it is supposed that your muscles can grow as well with Limb lengthening. Maybe no as fast as you lenghten your bones, but they can grow