Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Discussions => Topic started by: cyborg4life on November 25, 2021, 11:54:46 PM
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Hey everyone, so I just wanted to let you know about the upcoming LL LIVE streams with LL surgeons we haven’t heard from in a while...
Tuesday November 30th @ 8pm EST (5pm PST) - Dr. Debiparshad & PT Mike Russell
The team at LimbplastX Institute on new weight bearing protocol for Precice 2 Patients.
Here’s the link for the LL LIVE on Tues (https://youtu.be/RB2MCJJVzBs) since we didn't hold it today.
Thursday December 2nd @ 4pm EST (9pm UK) - Dr. Dimitrios Giotikas
From Athens BJR in Greece on his recent use of the G-Nail. He only appeared once on the channel and it was a poor audio interview...let's correct that.
Thursday December 9th @ 6pm EST - Dr. Janet Conway
Aka The Queen of LL from Sinai Hospital ICLL - My LL surgeon, hired by Dr. Paley years ago, works alongside the legendary Dr. Herzenberg and Dr. Assayag.
Thursday December 16th @ 7:30pm EST - Dr. Marie Gdalevitch
Hailing from Montreal, Canada who receives high regards from several other elite surgeons.
If you have any questions you’d like to ask you can submit them anonymously via this Google Forms link:
https://forms.gle/cAfxyuGm5HSJtRby8
or email live@cyborg4life.com
or post in "questions-for-lives" channel on d
or add to this thread
or just show up and ask live in the chat.
I’ll post links to the streams in the LL d Server. You can join for free - https://-/JCmE9MtFpN
Also, had a semi-formal chat with Dr. Paley yesterday and he just wanted patients in the US to know still no news on STRYDE Nail return (he still suspects very late 2022 or most likely 2023), however the shipping hold in the US has been released so LL clinics that didn’t have stock should be receiving them soon.
Alright that’s all I have for now.
Happy Thanksgiving if you celebrate it!
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Hey everyone, so I just wanted to let you know about the upcoming LL LIVE streams with LL surgeons we haven’t heard from in a while...
Tuesday November 30th @ 8pm EST (5pm PST) - Dr. Debiparshad & PT Mike Russell
The team at LimbplastX Institute on new weight bearing protocol for Precice 2 Patients.
Here’s the link for the LL LIVE on Tues (https://youtu.be/RB2MCJJVzBs) since we didn't hold it today.
Thursday December 2nd @ 4pm EST (9pm UK) - Dr. Dimitrios Giotikas
From Athens BJR in Greece on his recent use of the G-Nail. He only appeared once on the channel and it was a poor audio interview...let's correct that.
Thursday December 9th @ 6pm EST - Dr. Janet Conway
Aka The Queen of LL from Sinai Hospital ICLL - My LL surgeon, hired by Dr. Paley years ago, works alongside the legendary Dr. Herzenberg and Dr. Assayag.
Thursday December 16th @ 7:30pm EST - Dr. Marie Gdalevitch
Hailing from Montreal, Canada who receives high regards from several other elite surgeons.
If you have any questions you’d like to ask you can submit them anonymously via this Google Forms link:
https://forms.gle/cAfxyuGm5HSJtRby8
or email live@cyborg4life.com
or post in "questions-for-lives" channel on d
or add to this thread
or just show up and ask live in the chat.
I’ll post links to the streams in the LL d Server. You can join for free - https://-/JCmE9MtFpN
Also, had a semi-formal chat with Dr. Paley yesterday and he just wanted patients in the US to know still no news on STRYDE Nail return (he still suspects very late 2022 or most likely 2023), however the shipping hold in the US has been released so LL clinics that didn’t have stock should be receiving them soon.
Alright that’s all I have for now.
Happy Thanksgiving if you celebrate it!
Please Ask giotikas to talk about the patient who died recently and what he could have done to prevent that?
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Please Ask giotikas to talk about the patient who died recently and what he could have done to prevent that?
Are you scheduled for surgery with him soon?
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Please Ask giotikas to talk about the patient who died recently and what he could have done to prevent that?
Yes .
This question has to be made !
Or there is no reason for an interview with him at this point .
Ik it's a "bad" question but this is the point of them right?
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Thanks for doing this Victor. For Giotikas, I think many people would like to know about the recent death of the G-nail Patient. I understand it might be uncomfortable for you to ask him about it, but I believe the people deserve to know about this from the horse's mouth. Since the death of this patient, Giotikas has been silent in any public announcement to future patients. Nothing on his website, nothing sent in email. If someone is a future G-nail Patient, they do not know anything about the death of this patient, who has the exact same nail that they will use. Giotikas hasn't even changed any protocol, despite this death.
I personally know this patient well. This is someone who always had the chief head nurse help him EVERY SINGLE DAY personally. This is someone who is extremely prepared, diligent, and meticulous about his decisions. He worked in a highly technical industry working a 6-figure job. He is not stupid and careless, and if this could happen to him, it could happen to anyone.
Please do not let him evade the question. I have a good feeling that if you simply just ask "what will he do to avoid this in the future", he will evade the core question and talk about the rare probability of embolism and that it was completely out of his control. He might even mention his religious fasting... despite the fact that it has nothing to do with embolism and that he was completely aware and never disapproved of such practice. Make him answer: what will he exactly do in the future to prevent this, or is he just going to do nothing.
Other top surgeons such as Betz, Paley, and many others prescribe anticoagulants through the entire lengthening period to avoid this issue. Giotikas only gives Xarelto a few weeks blaming side effects when it is in fact to save himself money. Other surgeons give X-rays much more frequently than Giotikas. Other surgeons, do not ignore their patients when they say they have expressed pain and discomfort.
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I wonder if there is a correlation between the g-nails deaths because both cases we are aware of where using the g-nail and the main issues seemed to be the blood thinner protocol .
This aspect has to be cleared because either way we will dive into something bigger then we think OR we will be scared by something easily avoidable by the prescription of blood thinners for the entire distraction phase (or at least for way more then couple weeks) .
This is off topic but I believe its worth the debate
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Paley’s institute noticed stryde patients have higher chance of blood clots than precice 2 patients, so nails may be one factor causing blood clots.
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Paley’s institute noticed stryde patients have higher chance of blood clots than precice 2 patients, so nails may be one factor causing blood clots.
Weird because stryde sn g nail are weighbearing and for what I know the wbearing feature should be safer in this regard,right ?!
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Weird because stryde sn g nail are weighbearing and for what I know the wbearing feature should be safer in this regard,right ?!
Maybe the doctors get more confident when they know you can walk a lot. To add information, the deceased patient here walked A LOT. Twice as much as me, as he even went to PT walking sometimes. He put an alarm every 2 hours to walk a bit, so the weird thing in this case is that lack of mobilization can't be a factor.
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Maybe the doctors get more confident when they know you can walk a lot. To add information, the deceased patient here walked A LOT. Twice as much as me, as he even went to PT walking sometimes. He put an alarm every 2 hours to walk a bit, so the weird thing in this case is that lack of mobilization can't be a factor.
I wonder why no respected doctor had a death in their track record but some weirdows with their own technique and not standardized protocols aligned with others more experienced like Paley,Lee or Rozburch ,had them .
Guichet had his own "pt" , his own nail and his own blood thinner protocoal and results ....talk for him .
Giotikas just got popular NOW and already has one ,he is NOT a renowned surgeon what so ever as others say .
Like who knew him in 2017? 2016?2015?2014? Not sure of 2018 and 2019 either .
So there has to be a difference in surgical techniques and/or aftercare because it makes no sense to have thousands of cases and 0 bad cases such as this and a bunch of them and already one .
It can't be bad luck .
Too simple to put it that way .
What are your thoughts on it ?
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I wonder why no respected doctor had a death in their track record but some weirdows with their own technique and not standardized protocols aligned with others more experienced like Paley,Lee or Rozburch ,had them .
Guichet had his own "pt" , his own nail and his own blood thinner protocoal and results ....talk for him .
Giotikas just got popular NOW and already has one ,he is NOT a renowned surgeon what so ever as others say .
Like who knew him in 2017? 2016?2015?2014? Not sure of 2018 and 2019 either .
So there has to be a difference in surgical techniques and/or aftercare because it makes no sense to have thousands of cases and 0 bad cases such as this and a bunch of them and already one .
It can't be bad luck .
Too simple to put it that way .
What are your thoughts on it ?
Do you know the stats from other doctors? How do you Paley and Rozbruch have had no deaths?
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Do you know the stats from other doctors? How do you Paley and Rozbruch have had no deaths?
I have no stats but they are really exposed doctors since they are famous/influent .
Paley claims no death as well so I believe such a doctor can't claim no deaths because if there was one that one would have an easy time exposing him by just writing a single post on this forum too ;his family or someone .
The more influent you are the more exposed you are therefore they can't hide a death in my opinion .
Its REALLY hard to hide it if that happened .
Then never say never but we can't be sure about anything 100% so going with logic I say this .
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I have no stats but they are really exposed doctors since they are famous/influent .
Paley claims no death as well so I believe such a doctor can't claim no deaths because if there was one that one would have an easy time exposing him by just writing a single post on this forum too ;his family or someone .
The more influent you are the more exposed you are therefore they can't hide a death in my opinion .
Its REALLY hard to hide it if that happened .
Then never say never but we can't be sure about anything 100% so going with logic I say this .
Please don’t bring this nonsense up on your interview Vic, this guy just starts random conspiracies while admitting he has no evidence. Please guys actually post questions that will help provide the LL community gain more useful information, not this embarrassing made up drama/conspiracy crap.
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Please don’t bring this nonsense up on your interview Vic, this guy just starts random conspiracies while admitting he has no evidence. Please guys actually post questions that will help provide the LL community gain more useful information, not this embarrassing made up drama/conspiracy crap.
Again you in another topic ?
Can you bring a question yourself without quoting me or you have to get at people because you have no one to talk to ?
If you can't understand why a world class renowned surgeon can't have a death on CLL without it being mainstream or on this forum already ,then I am terrified for the ppl around you that have to deal with ur stupidity .
You are way more dumb then I thought in the other thread .
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Lol WHY? We should be asking these questions! Its a matter of a lost life.
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Lol WHY? We should be asking these questions! Its a matter of a lost life.
He is not interested in this surgery .
He is here just to bother and talk because he is a sad person .
Just ignore him ;he is time consuming.
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I have no stats but they are really exposed doctors since they are famous/influent .
Paley claims no death as well so I believe such a doctor can't claim no deaths because if there was one that one would have an easy time exposing him by just writing a single post on this forum too ;his family or someone .
The more influent you are the more exposed you are therefore they can't hide a death in my opinion .
Its REALLY hard to hide it if that happened .
Then never say never but we can't be sure about anything 100% so going with logic I say this .
I don’t know other doctors but I had LL surgeries with paley institute twice. We know other patients who are also doing CLL because we often see each other during PTs, doctors appointment, etc… If something bad happens to someone, it will be spread out quickly. A few weeks ago someone had his nails bending, several LLers I met talked about this, and PT also talked about this. It’s impossible to hide anything bad because we can often see each other, and many LLers live in one of Paley’s recommended hotels.
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So is Stryde being redesigned or is it going to be a completely new nail? How does Paley know it's going to be 2023 release? They clearly didn't do enough testing to prevent a recall last time what will nuvasive do differently this time?
With the 2023 time line the synoste nitinail will have completed trial and could already be on the market, what are the surgeons options on this new weight bearing nail?
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What are risk factors for poor bone consolidation for cosmetic LL patients using PRECICE 2 in particular? Have there been an incidents of nonunion and what was the underlying cause?
Is PRECICE 2 the safest option for cosmetic LL for femurs and tibias?
How important is it to have a experienced PT that deals with LL patients specifically?
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Is LON tibias or Precice tibias safer?
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Can you ask Dr. Debiparshad, the cost of femur lengthening with the precise 2.2 nail and if his place offers physical therapy sessions with the precise and same for Dr. Conway? Also what’s the difference between stryde and precise 2 In terms of months for being able to walk with a normal gait if lengthening at normal rate throughout distraction with no complications assumed.
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Where can a potential patient find the probabilities of various adverse outcomes (like infections, pulmonary embolism, fat embolism, nerve damage) of this procedure at your practice?
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In the past year or two I have noticed a shift in the amount of length surgeons recommend. The recommended safe lengthening amount was based on percentage of the original bone length, usually 15% was recommended if I remember right. (Femurs). Now I only hear doctors saying it’s case by case but most patients can achieve 8cm. I wonder if there is too much emphasis on this static maximum number, because everyone wants the max length for the money being payed. I also wonder if surgeons feel the need to say that most people can achieve 8cm otherwise potential patients will go elsewhere. Or maybe there is just more info that 8cm is generally achievable for most patient? Thank you!
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...Giotikas just got popular NOW and already has one ,he is NOT a renowned surgeon what so ever as others say .
Like who knew him in 2017? 2016?2015?2014? Not sure of 2018 and 2019 either ...
Giotikas is 46 or 47 years old, he couldn't have been as renowned as other surgeons much older than him in the previous years. From 2012 until 2019 he worked full time at two of the biggest and most respected institutions of the UK National health System, Cambridge and Oxford University Hospitals. You can't be just anybody if you want to work at these places!
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For physical therapy, all I did was stand against a wall or sit with straight legs with sand bags on my knees. I also slept with a pillow under my knees, with the knees slightly bent every night.
As far as I know my recovery was slower but was eventually as complete as anyone else's in the long run. The tradeoff was that I was much more comfortable the whole lengthening phase and slept a lot better than any of my cohorts.
Is a faster recovery all patients are getting in exchange for expensive physical therapy sessions? What do you think of my comfort-first, take-it-easy approach?
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That’s really heavy news about the unfortunate patient. I assume this has been officially confirmed? I wonder if there are legal implications from the case that might prevent him to speak about it? I’ll see what I can do.
Besides those directly stated, I’ll best match questions with a surgeon’s Q&A interview.
Thanks for all the great questions keep them coming.
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Yes please please ask giotikas about what went wrong with that patient who died. Many know that he stopped blood thinners early. I want to see how giotikas answers it.does he take fault or blame a dead patient who can't defend himself.
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Can you add a separate google form for each doctor? Right now it's taking questions only for Debiparshad.
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I assume this has been officially confirmed? I wonder if there are legal implications from the case that might prevent him to speak about it?
Yeah i doubt hell talk about it if its a legal matter which any attorney would tell you not to do that. Also can someone post a credible link for this news if it's true.
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Yeah Antonio111111 I asked if they could speak on this if I ask the question. Not sure how much detail he can go into so guess we'll see.
Sorry about that two. I just fixed it here's a new Google Forms link for all upcoming surgeons: https://forms.gle/YjwxiZNkgLRLRBVJ6
Also here are the links for the LL livestreams this week.
Dr. Debiparshad and Mike "The PT"
https://youtu.be/RB2MCJJVzBs
Dr. Giotikas
https://youtu.be/QODiRKN3lFs
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Yeah Antonio111111 I asked if they could speak on this if I ask the question. Not sure how much detail he can go into so guess we'll see.
Less importance on exactly what happened to the patient. He's probably going to give excuses of legality and privacy. and we know already what happened: PE.
More importance on what EXACTLY will he do in the FUTURE to prevent this. There is NO excuse to not speak on this. Even if it gets you uncomfortable victor, he has to answer this.
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How many of his patients are women and what is the difference for women and men for recovering and for bone consolidation?
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Less importance on exactly what happened to the patient. He's probably going to give excuses of legality and privacy. and we know already what happened: PE.
More importance on what EXACTLY will he do in the FUTURE to prevent this. There is NO excuse to not speak on this. Even if it gets you uncomfortable victor, he has to answer this.
I honestly doubt he will take the interview and turn it down .
But we never know , credit to him if he takes it and clarify.
As you said he will not admit a mistake because he would go to jail .
But ye maybe give to the question a porpuse so that no matter what legal action there are ,he can say something .
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Yes want to know more about the case of the patient who died but understandable if he doesn't want to talk about it.
I honestly doubt he will take the interview and turn it down .
But we never know , credit to him if he takes it and clarify.
As you said he will not admit a mistake because he would go to jail .
But ye maybe give to the question a porpuse so that no matter what legal action there are ,he can say something .
Can he be jailed for malpractice even if the patient died more than 1 month after the surgery?
How many of his patients are women and what is the difference for women and men for recovering and for bone consolidation?
This is also interesting. I think on this forum most of us here are male and we don't have much info on females doing the surgery, so this is additional knowledge for all if he answers it.
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Well as far as I know we're still on for tomorrow. I feel like it was asked a while back in a previous session but I'll see if I can fit the question in about female patients, if not I will ask the next surgeon.
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I have a couple of questions for Dr Giotikas:
-Why did he chose to use the G-nail over other manual weight-bearing nails like the Betz nail, etc?
-How does he prevent "runaway" lengthening when the G-nail does not have a mechanism to reverse lengthening (in the way that Stryde does)?
-How is G-nail able to lengthen up to 1cm safely during surgery? Wouldn't this have an adverse impact on stretching the surrounding nerves/tendons?
-What tests/examinations does he typically do for each patient before surgery?
-For patients who cannot stay in Greece more than 90 days due to not being an EU citizen, how does he manage post-care?
Thank you!
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Hey Cyborg4life,
I have these questions:
1. I am aware the Stryde nail comes in 10, 11.5, and 13 mm, with lengths of 235, 250, and 265 mm. Are there advantages to using a smaller nail? A few I can think of:
- Less aggressive reaming of canal -> easier surgery, less risk of FES
- Stability
2. What is average femoral bone canal diameter for male? What is the formula doctors use to determine extent of reaming?
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Hey CyborgForLife,
I want to ask Dr. Marie Gdalevitch why does not do cosmetic LL unilaterally i.e, left first and then right or vice versa? What are the risks she sees that it should be avoided even though it lets the patient be more mobile and reduces chances of embolisms?
Thanks Victor.
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Hey,CyborgForLife! I would like to ask any doctor a question, that is, what are the physical conditions for ll surgery? For example, some hidden diseases are not easy to detect by ourselves. We need hospital testing to know whether we are suitable for this operation. I was afraid that after working hard for a long time, I was told by the doctor that I couldn't do the operation
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Hey Victor, could you bring back Dr.Lee in an interview and also contact doctor Kevin tetsworth ?
He often appears with Lee and Thaller in international convention and he seems pretty knowledgeable.
I personaly have no interest in getting this done in Australia but I would like to have more doctors who do not promote LL a lot but have 20+ years experience .
I want the procedure done by a good surgeon but not by someone who is taking advantage of my insecurity to get my money ,therefore I wish we could have on this forum less of some butchers and more of respectable surgeons/mans .
After recent case I feel we need to refresh some names and stop promoting some surgeons as "skilled" just because their names appears more in this forum .
A lot of top notch surgeons do not perform this or advertise it for cosmetic reasons therefore we might be missing huge opportunities next to us to reach incompetent ones across the globe just because more popular here .
I feel it would be beneficial so please take a look at him since he started his career in Baltimore and trained under Paley as well .
(I know Australian government is against it if I am not wrong but an interview would not hurt .
Maybe he do not promote but still perform is you have the money for it )
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Gotcha tacoma94 I'll ask that question tomorrow about nail size effects.
Masteryourlife I have heard good things about Dr. Tetsworth also, I'll have to look into him more.
Another surgeon who doesn't care to promote stature lengthening much but definitely is experienced enough, highly regarded by other surgeons and in Australia is Dr. Munjed Al Muderis (https://www.youtube.com/watch?v=3Fn67nWCKe0&t). In our interview on osseointegration, Dr. Rozbruch mentioned Dr. Muderis is a top talent in OI, which makes a LL procedure look easy. I reached out for interview but no response yet. I bet if I asked for OI he'd be all over it since it's a rapidly growing field and bc CLL is probably not a big scope of practice like the others you mentioned.
Reminder - tomorrow 6pm EST - Dr. Conway will be on LL LIVE. She's actually another who doesn't promote stature lengthening much but very experienced.
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Gotcha tacoma94 I'll ask that question tomorrow about nail size effects.
Masteryourlife I have heard good things about Dr. Tetsworth also, I'll have to look into him more.
Another surgeon who doesn't care to promote stature lengthening much but definitely is experienced enough, highly regarded by other surgeons and in Australia is Dr. Munjed Al Muderis (https://www.youtube.com/watch?v=3Fn67nWCKe0&t). In our interview on osseointegration, Dr. Rozbruch mentioned Dr. Muderis is a top talent in OI, which makes a LL procedure look easy. I reached out for interview but no response yet. I bet if I asked for OI he'd be all over it since it's a rapidly growing field and bc CLL is probably not a big scope of practice like the others you mentioned.
Reminder - tomorrow 6pm EST - Dr. Conway will be on LL LIVE. She's actually another who doesn't promote stature lengthening much but very experienced.
Yes , those doctors are what I personally need to look for .
I wish more doctors where more open to suggest others like dr.Lee and Rozbruch did .
From a top notch surgeon , a suggestion towards someone is a big thing , more then few diares ..therefore if they and maybe Paley as well , put out there some names about doctors who do not promote CLL but are equally skilled ,the community would benefit A LOT .
I understand that might take couple patients from them but they already made history in the orthopedic field so I believe those extra k would not impact them the way it would impact this community if we had ACTUALLY more talented and moral surgeons .
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Hey cyborg another question. Are there any risks to patients getting dental treatment eg getting a crown replaced during limb lengthening?
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Hi Victor,
my question to LL docs:
Does it make sense to wear a smart watch (like Apple Watch Series 6) after the surgery to monitor blood oxygen in order to detect a potential pulmonary embolism?
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Got your questions Limbfan2020 and Highest thanks.
Also here's the LL LIVE episode with Dr. Conway where we answered some patient questions that were asked in this thread.
Medium Drink of Water's was at 18:45 and the one many were worried about on pulmonary embolism was at 20:30
https://youtu.be/fvUzw39Pt3Q
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Hey CyborgForLife,
I want to ask Dr. Marie Gdalevitch why does not do cosmetic LL unilaterally i.e, left first and then right or vice versa? What are the risks she sees that it should be avoided even though it lets the patient be more mobile and reduces chances of embolisms?
Thanks Victor.
My questions to Dr Marie:
"How necessary is it to know French as a CLL patient in Montreal who is coming there from outside solely for CLL?"
"If a patient cannot stay in Montreal for the full duration of lengthening is there anything that can be done to accommodate them?"
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Hey CyborgForLife,
I want to ask Dr. Marie Gdalevitch why does not do cosmetic LL unilaterally i.e, left first and then right or vice versa? What are the risks she sees that it should be avoided even though it lets the patient be more mobile and reduces chances of embolisms?
Thanks Victor.
This is an interesting approach for CLL. Even though it reduces the chances of embolism per surgery does it not double the total chances because you're doing the procedure twice?
Siegfried is doing this with Dr Kohne and what you say about mobility is true. He is not using a wheelchair and is on crutches. I am also tempted by this but the idea of stretching out this whole ordeal for a year seems daunting. But so does staying in a wheelchair for 6 months haha. Ever since Stryde was taken off the shelves I have been extremely hesitant to commit to this surgery because the sight of a wheelchair scares me.
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I'll be sure to ask thanks mod.
Here's the link to the last surgeon LL LIVE Q&A of the year with Dr. Marie Gdalevitch of Montreal, Canada. I have a list of submitted questions but we should have time for some from the live chat too. We should be going live in about 15min from now but you can just watch it later of course...
https://youtu.be/KuH921Y4Awo
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Lol WHY? We should be asking these questions! Its a matter of a lost life.
She's 100% right in this case. And that's why we are here and doctors there: to answer as best as we can any patient or fellow concern (or ask questions). We have right to be optimistic but others, provided they don't become just fear mongering and destructive, also have the right to be more afraid or skeptical, and at the same time LL being as important to them as to others...
(I won't elaborate more on this forum about that, but two of the mainstream doctors in this forum had at least one death each, altough possibly not their direct fault - but they couldn't avoid outcome after manifestation either: thrombosis due to clots)
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What was the fate of hearing about why the Giotikas patient died? Was it fat embolism? Could the patient have done anything?