Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Discussions => Topic started by: Argent_Lecter on April 29, 2018, 05:34:55 AM
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Hello there,
I've been reading here since 2015 and FINALLY I made up my mind - I decided it that I want the surgery. But with the big decisions, the doubts come right to you: "What doctor will I give my legs to?"
The first one I had in consideration was Dr Sarin, from India, although after reading some of his patients' diaries I got a bit scared, so I discarded him. Obviously Dr. Paley is in the minds of many, but it is too expensive and I have to be realistic... I cannot afford him. Dr Xia, some Russian doctors and other Indians were my options, however I was still doubtful and started to think about ditching my dream of gaining a few inches. :(
Days ago I read about Dr. Pili, from Italy, and boy, I think this is it. Could any of his patients tell me if it's worth going 8 to 9 months to Italy by myself and start this trip to be taller? It would be really nice to read some of your opinions or experiences.
Take care y'all.
- A. Lecter
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Most of his and Catagni's patients stopped posting here.
You need to go into the patients' diaries section of the forum and use the search terms "Pili" or "Catagni".
Sarin is called a "butcher" around these parts, and a Chinese user recently warned (http://www.limblengtheningforum.com/index.php?topic=64.msg83727#msg83727) us Xia is not even a certified doctor in China. Sringari also had terrible results. India is a non-option unless you go to Parihar (based on all of what I have read in my time here).
I'm not one of his patients, but I can at least share my opinion. My main issue with Pili is that he seems to be fine with almost anything (e.g. lengthening 8cm on tibias, patients traveling far away post-op). However, I respect Catagni a lot and their patients had good results so far. That's all I can say without being a LL veteran.
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Go to Pili and especially Catagni for external tibias and do about 6cm without problems.
But never let him perform you atl surgery to lengthen more because you'll simply be crippled.
So yes, Pili is a very good option for externals but stay away from atl at all costs.
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Most of his and Catagni's patients stopped posting here.
You need to go into the patients' diaries section of the forum and use the search terms "Pili" or "Catagni".
Sarin is called a "butcher" around these parts, and a Chinese user recently warned (http://www.limblengtheningforum.com/index.php?topic=64.msg83727#msg83727) us Xia is not even a certified doctor in China. Sringari also had terrible results. India is a non-option unless you go to Parihar (based on all of what I have read in my time here).
I'm not one of his patients, but I can at least share my opinion. My main issue with Pili is that he seems to be fine with almost anything (e.g. lengthening 8cm on tibias, patients traveling far away post-op). However, I respect Catagni a lot and their patients had good results so far. That's all I can say without being a LL veteran.
Hi man, I've read most of their patient's diaries and they seem to be doing pretty good.
Yeah I know Sarin's reputation, he fked up Sweden and some others. I'm not fking going there to be 'butchered'.
Right now my options are Pili or Salameh in Germany. Is he good for what you know?
My goal is to lengthen like 6 cm MAX and not getting by any means the ATL surgery because obvious reasons.
Take care buddy, thanks for the info.
- A. Lecter
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Go to Pili and especially Catagni for external tibias and do about 6cm without problems.
But never let him perform you atl surgery to lengthen more because you'll simply be crippled.
So yes, Pili is a very good option for externals but stay away from atl at all costs.
Pili and Catagni seem like my particular best option based on budget, language (I speak italian and I have family there) and location because it's kinda scary going to india or russia by myself.
I'm not doing the atl surgery, that's just not an option.
Take care man.
- A. Lecter
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I sent an email to Dr. Pili today:
Dear Dr. Pili,
I have read good things about you and I’m planning to do this surgery (5-6cm – external tibia) soon.
I have a few questions:
1. Is it possible to get an surgery appointment by the end of August or in September?
2. Do you recommend (for safety reasons) to stay in Italy for the lengthening and consolidation phase?
3. If I aim 5-6cm how long does it take until the frames come off?
4. What location do you recommend for me to stay a few to several months that are not too expensive (less than 500/month) and not too far away from an airport?
5. How much PT is needed and how much does it cost?
His answer a few hours later:
You can have indeed 5-6 cm with HEF on tibia, it should take 7-11 months.
You can have an appointment with me in August-September.
http://drpiliortopedico.it/bookings/ for bookings
You can stay in Italy in Lecco for as long as you like. There are apartments you can rent for around 500 € and we will help with visa.
The surgery costs 19-20.000 €, if Achilles tendo lengthening is needed (80% chance) it will cost you around 4500 €, for frame removal another 3500 €.
Kind regards
Dr D Pili
info@drpiliortopedico.it
www.drpiliortopedico.it
Is the Achilles tendo lenghtening really that common? I think it's strange that the cost of the frame removal isn't added to the price in the first place. On their website it's also written that full consolidation takes up to 5-6 months for 8cm. But he wrote me something with 7-8 months for 5-6cm ...?? I don't understand that
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I sent an email to Dr. Pili today:
Dear Dr. Pili,
I have read good things about you and I’m planning to do this surgery (5-6cm – external tibia) soon.
I have a few questions:
1. Is it possible to get an surgery appointment by the end of August or in September?
2. Do you recommend (for safety reasons) to stay in Italy for the lengthening and consolidation phase?
3. If I aim 5-6cm how long does it take until the frames come off?
4. What location do you recommend for me to stay a few to several months that are not too expensive (less than 500/month) and not too far away from an airport?
5. How much PT is needed and how much does it cost?
His answer a few hours later:
You can have indeed 5-6 cm with HEF on tibia, it should take 7-11 months.
You can have an appointment with me in August-September.
http://drpiliortopedico.it/bookings/ for bookings
You can stay in Italy in Lecco for as long as you like. There are apartments you can rent for around 500 € and we will help with visa.
The surgery costs 19-20.000 €, if Achilles tendo lengthening is needed (80% chance) it will cost you around 4500 €, for frame removal another 3500 €.
Kind regards
Dr D Pili
info@drpiliortopedico.it
www.drpiliortopedico.it
Is the Achilles tendo lenghtening really that common? I think it's strange that the cost of the frame removal isn't added to the price in the first place. On their website it's also written that full consolidation takes up to 5-6 months for 8cm. But he wrote me something with 7-8 months for 5-6cm ...?? I don't understand that
So 25.000 € in total. Wow! That's just about 1/4 of Paley's price.
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So 25.000 € in total. Wow! That's just about 1/4 of Paley's price.
is it me or you're just comparing internal price (paley) with external price (pili) ?
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is it me or you're just comparing internal price (paley) with external price (pili) ?
Does Paley do external? I only found his PRECICE price here.
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Does Paley do external? I only found his PRECICE price here.
He doesn't. He uses Precice internals even for tibias.
I think he only uses external fixators for non-cosmetic cases, from what I recall reading in some diaries. I know he did use them cosmetically in the past, though. He showcased his CLL results on achondroplastic patients, which, as far as I'm aware, were done with externals since an early age, as those achondroplastic children grew and developed into adults. So, before their growth plates were closed.
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E-Mail to Dr. Pili
1. I will soon book an appointment. How long after consultation do I have to wait for surgery?
On your webiste it’s stated that consolidation for 8cm is about 5-6 months:
„Usually it takes around 100 days for lengthening up to 8 cm and 5-6 months to achieve a full consolidation.“ Why would it take longer for less cm?
2. Do I need visa as a German citizen if I want to stay for multiple months?
3. Is the Achilles tendo lengthening risk percentage the same if you do 5cm or more than 5cm?
Dr. Pili's answer
Usually after the consultation around 2-3 months but sometimes I can offer some last minute spaces.
Consolidation time is pretty much the same for 5 or 8 cm.
A german citizen can stay as long as he wishes without a visa.
For ATL, lengthening 5 cm is around 40-50%.
(He didn't answer my first question really)
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He doesn't. He uses Precice internals even for tibias.
I think he only uses external fixators for non-cosmetic cases, from what I recall reading in some diaries. I know he did use them cosmetically in the past, though. He showcased his CLL results on achondroplastic patients, which, as far as I'm aware, were done with externals since an early age, as those achondroplastic children grew and developed into adults. So, before their growth plates were closed.
But I thought we should only do tibia with external?
By the way, I send an email to Dr. Pili too.
E-mail to Dr. Pili
Hi Dr. Pili,
My main concern with the surgery is the safety and athletic recovery. To be frank, I am a devoted martial arts practicioner. On the other hand, I also worry that I might not end up taller, but on a wheelchair or even dead instead. I don't know how true it is but I read that LL could cause some serious nerve damage and infection which can lead to death.
So basically, I'd like to know what is the chance of me ending up being permanently disabled or dead if I follow anything you say? And how much athletic recovery could I expect post-surgery in comparison to the original athleticsm?
Dr. Pili's answer
I can reassure you will not end up on a wheelchair or dead! On the other hand I have to warn you that to go back to full martial arts you will need at least 18-20 months.
Where are you from? You should come to Italy for a consultation in order to discuss the details and see weather you are a good candiate for this surgery.
Wow he gives a full assurance
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E-Mail to Dr. Pili
1. I will soon book an appointment. How long after consultation do I have to wait for surgery?
On your webiste it’s stated that consolidation for 8cm is about 5-6 months:
„Usually it takes around 100 days for lengthening up to 8 cm and 5-6 months to achieve a full consolidation.“ Why would it take longer for less cm?
2. Do I need visa as a German citizen if I want to stay for multiple months?
3. Is the Achilles tendo lengthening risk percentage the same if you do 5cm or more than 5cm?
Dr. Pili's answer
Usually after the consultation around 2-3 months but sometimes I can offer some last minute spaces.
Consolidation time is pretty much the same for 5 or 8 cm.
A german citizen can stay as long as he wishes without a visa.
For ATL, lengthening 5 cm is around 40-50%.
(He didn't answer my first question really)
Consolidation varies on an individual by individual basis. If you are young, don't smoke, have wider, strong bones, have been blessed by good genetics, are getting great nutrition and calcium+vitamin d3 suppplementation, doing all you should be doing, your consolidation will be better than someone who is doing the bare minimum and and eating like crxp.
Anyone feel free to correct me if I'm wrong.
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He doesn't. He uses Precice internals even for tibias.
I think he only uses external fixators for non-cosmetic cases, from what I recall reading in some diaries. I know he did use them cosmetically in the past, though. He showcased his CLL results on achondroplastic patients, which, as far as I'm aware, were done with externals since an early age, as those achondroplastic children grew and developed into adults. So, before their growth plates were closed.
Correct. For cosmetic patients it's only Precice for all leg segments.
Patients requiring complex deformities may use externals like the TSF (http://www.smith-nephew.com/patient/treatments/limb-restoration/what-is-the-taylor-spatial-frame-----/), since that's what the device excels in.
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Correct. For cosmetic patients it's only Precice for all leg segments.
Patients requiring complex deformities may use externals like the TSF (http://www.smith-nephew.com/patient/treatments/limb-restoration/what-is-the-taylor-spatial-frame-----/), since that's what the device excels in.
Android. I thought it's best to use externals for tibia?
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I sent an email to Dr. Pili today:
Dear Dr. Pili,
I have read good things about you and I’m planning to do this surgery (5-6cm – external tibia) soon.
I have a few questions:
1. Is it possible to get an surgery appointment by the end of August or in September?
2. Do you recommend (for safety reasons) to stay in Italy for the lengthening and consolidation phase?
3. If I aim 5-6cm how long does it take until the frames come off?
4. What location do you recommend for me to stay a few to several months that are not too expensive (less than 500/month) and not too far away from an airport?
5. How much PT is needed and how much does it cost?
His answer a few hours later:
You can have indeed 5-6 cm with HEF on tibia, it should take 7-11 months.
You can have an appointment with me in August-September.
http://drpiliortopedico.it/bookings/ for bookings
You can stay in Italy in Lecco for as long as you like. There are apartments you can rent for around 500 € and we will help with visa.
The surgery costs 19-20.000 €, if Achilles tendo lengthening is needed (80% chance) it will cost you around 4500 €, for frame removal another 3500 €.
Kind regards
Dr D Pili
info@drpiliortopedico.it
www.drpiliortopedico.it
Is the Achilles tendo lenghtening really that common? I think it's strange that the cost of the frame removal isn't added to the price in the first place. On their website it's also written that full consolidation takes up to 5-6 months for 8cm. But he wrote me something with 7-8 months for 5-6cm ...?? I don't understand that
Thanks for the info man! it really helped me.
I'm pretty convinced with Pili... except for the ATL surgery. I don't trust that and I think the recovery that will be longer or you'll be movement-limited for life. That's just my opinion but I'd better ask a few doctors that I know to see what they think about it.
Does anyone here in this forum has had the ATL surgery? Did you recover after it?
- A. Lecter
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is it me or you're just comparing internal price (paley) with external price (pili) ?
Pili charges like 50 K for internals, I guess.
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Thanks for the info man! it really helped me.
I'm pretty convinced with Pili... except for the ATL surgery. I don't trust that and I think the recovery that will be longer or you'll be movement-limited for life. That's just my opinion but I'd better ask a few doctors that I know to see what they think about it.
Does anyone here in this forum has had the ATL surgery? Did you recover after it?
- A. Lecter
Me. And no I havent and noone recovers in an acceptable degree.
Atl should be banned, simply as that.
1 year before I did at shortening and now I am much better though. If I've left myself with atl I would be ruined forever.
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but if the doctor says ATL is necessary what should you do then ? does it help to stop lengthening? what if it's too late?
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but if the doctor says ATL is necessary what should you do then ? does it help to stop lengthening? what if it's too late?
E-mail doctors like Paley, Birkholtz, Solomin, Kulesh, and get their opinions. No one in this forum can appropriately answer a medical question like that.
One paper I read did suggest physiotherapy could deal with external fixator lengthening problems rather than straight ATL. But if your doctor says you need ATL, what are you gonna do? You're not an orthopedic surgeon to make a medical call about your specific instance. Get the most opinions you can on this.
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You can probably ask Pili himself why he believes ATL is generally so needed too. But get more opinions to be safe.
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Android. I thought it's best to use externals for tibia?
Dr. Paley's reasoning is that the benefits outweigh the cons. Cosmetic patients are much pickier, and they often do bilateral lengthening unlike correction patients (e.g. limb length discrepancy), which make discomfort a point of complaint. From what I've read anterior knee pain risk is lowered with the correct technique, so that probably solidified his decision to go all-in with Precice (he is a consultant for them after all).
Edit: typo, "picker" to "pickier".
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Dr. Paley's reasoning is that the benefits outweigh the cons. Cosmetic patients are much picker, and they often do bilateral lengthening unlike correction patients (e.g. limb length discrepancy), which make discomfort a point of complaint. From what I've read anterior knee pain risk is lowered with the correct technique, so that probably solidified his decision to go all-in with Precice (he is a consultant for them after all).
Which one would you rather do or believe is safer?
Femur with PRECICE2/3 by Dr. Paley or Tibia with Hybrid external fixator by Dr. Catagni (If am not mistaken, the best Dr. for external?)
There will be a huge discrepancy in cost between the two although I am not sure which one would result in less long-term complications and loss of functionality.
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Femur with PRECICE2/3 by Dr. Paley or Tibia with Hybrid external fixator by Dr. Catagni (If am not mistaken, the best Dr. for external?)
HEF with Pili/Catagni on tibiae and PRECICE with Paley but in femurs.
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HEF with Pili/Catagni on tibiae and PRECICE with Paley but in femurs.
Yeah, I was asking if we had to choose between the two, which one wins?
Thing is lengthening only femurs would not look aesthetically pleasing whereas long tibia and higher knee level will make you look visually taller especially if you're wearing shorts. But safety and athletic recovery are the priority.
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Which one would you rather do or believe is safer?
If money was no concern, I'd go with Precice out of convenience. I'd swallow the risk since it'd be a smoother experience overall, plus the ERC would make lengthening a mindless task. Less scars too.
But in reality, I'd go with bilateral external tibias and put the savings toward something else. It's much better tolerated unlike external femurs. As for scars, that's what my leg hairs are for!
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If money was no concern, I'd go with Precice out of convenience. I'd swallow the risk since it'd be a smoother experience overall, plus the ERC would make lengthening a mindless task. Less scars too.
But in reality, I'd go with bilateral external tibias and put the savings toward something else. It's much better tolerated unlike external femurs. As for scars, that's what my leg hairs are for!
So you believe that on paper, uniteral external tibias are technically the safest method compared to anything else even when it's not done by Paley? Which doctor is the best for external tibias?
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So you believe that on paper, uniteral external tibias are technically the safest method compared to anything else even when it's not done by Paley? Which doctor is the best for external tibias?
Just a reminder that I haven't done CLL yet, so don't take my replies as hard advice. A memorable avatar and posting frequency is no substitute for experience.
That being said, I wouldn't say unilateral external tibias is necessarily safer than bilateral, just more convenient to have a fully working leg (frames are weight bearing though, so not as beneficial as unilateral internals IMO). Doing unilateral means you'd have to go under general anesthesia and take pain killers more times, which can be seen as a risk, not to mention paying more (surgery, hospital stay, PT, accommodation, etc.). In the end you have to balance and decide which pros and cons make sense to you: safety, convenience, duration, pain level, etc.
Even veterans usually only have one doctor, so it's hard to say who is the best (but they certainly have a better idea on what to look for). I tend to agree with what has been echoed in this community: Dr. Catagni/Pili, Dr. Birkholtz, Dr. Parihar, and Dr. Solomin/Kulesh. I even suggest Dr. Mahboubian; his latest diaries are all for Precice, but I believe he still offer externals (who knows, maybe Dr. Rozbruch might too). They're all published contributors in their field and are relatively conservative in their treatment methods.
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What is not spoken of enough about unilateral CLL is that you have to decide on a length while lengthening the first leg and stick to the same length in the other leg afterwards. If you lengthen 7cm on your good leg and your bad leg has bad nerve pain and preconsolidation at 5cm you cannot stop because you would then have a 2cm discrepancy.
If this wasn't an issue I would have recommended unilateral for anyone who can afford it and has the time. Also you will generally have a better and more productive time dealing with one leg at a time.
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Just a reminder that I haven't done CLL yet, so don't take my replies as hard advice. A memorable avatar and posting frequency is no substitute for experience.
That being said, I wouldn't say unilateral external tibias is necessarily safer than bilateral, just more convenient to have a fully working leg (frames are weight bearing though, so not as beneficial as unilateral internals IMO). Doing unilateral means you'd have to go under general anesthesia and take pain killers more times, which can be seen as a risk, not to mention paying more (surgery, hospital stay, PT, accommodation, etc.). In the end you have to balance and decide which pros and cons make sense to you: safety, convenience, duration, pain level, etc.
Even veterans usually only have one doctor, so it's hard to say who is the best (but they certainly have a better idea on what to look for). I tend to agree with what has been echoed in this community: Dr. Catagni/Pili, Dr. Birkholtz, Dr. Parihar, and Dr. Solomin/Kulesh. I even suggest Dr. Mahboubian; his latest diaries are all for Precice, but I believe he still offer externals (who knows, maybe Dr. Rozbruch might too). They're all published contributors in their field and are relatively conservative in their treatment methods.
Don't worry. Not taking what you said as hard advice but in general I see that you post good stuffs.
Yeah you're right, we should factor the anesthesia and painkillers too. I just thought with unilateral, if the surgery goes south, you'd still have the other healthy leg. But with bilateral, you might lose both legs. Isn't that so? Not to mention less risk for fat embolism.
I think Paley might have decided not to do external because he makes more money doing PRECICE and not because classic Illizarov is obselete.
What is not spoken of enough about unilateral CLL is that you have to decide on a length while lengthening the first leg and stick to the same length in the other leg afterwards. If you lengthen 7cm on your good leg and your bad leg has bad nerve pain and preconsolidation at 5cm you cannot stop because you would then have a 2cm discrepancy.
If this wasn't an issue I would have recommended unilateral for anyone who can afford it and has the time. Also you will generally have a better and more productive time dealing with one leg at a time.
If we could follow the rules and don't lengthen more than 5cm, do you think it'd still be an issue? I just want the safest scenario possible.
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Yeah you're right, we should factor the anesthesia and painkillers too. I just thought with unilateral, if the surgery goes south, you'd still have the other healthy leg. But with bilateral, you might lose both legs. Isn't that so? Not to mention less risk for fat embolism.
Even if things went really badly with bilateral, losing function of both legs doesn't sound likely to me. If something went wrong, it'd be isolated to one leg. Surely it's possible, but it's like being struck by lightning twice.
I think Paley might have decided not to do external because he makes more money doing PRECICE and not because classic Illizarov is obselete.
Correct. Externals are superior when it comes to complex deformities or fractures, since they offer six axis of manipulation, which is just not possible with a telescoping internal rod. It's an easier decision to say "internals only for cosmetic patients" since it's relatively simple and it offers a more pleasant experience (and since it's elective surgery, the high price can be justified).
And indeed, Dr. Paley is a paid consultant for Precice, and receives royalties (https://www.reachyourheight.com/wp-content/uploads/2017/12/2015-Paley-PRECICE-Expert-Reviews.pdf) (second to last page). I don't think it's a bad thing since obviously it's a great product, and therefore this relationship makes it a no-brainer to feature it front and center. You can also tell by how he talks about the device that he's passionate about it, so I believe that he sincerely believes in the product too.
If we could follow the rules and don't lengthen more than 5cm, do you think it'd still be an issue? I just want the safest scenario possible.
As you may have seen elsewhere, I think it's relatively safe as long as lengthening is around 20% of the initial bone length. What's most important seems to be: stay near clinic during distraction, regular PT, diet conducive to bone healing, maintain weight, slow down distraction rate if necessary, and to not hesitate to ask the clinic for any reason if you suspect something is wrong (there are no stupid questions when your limbs are on the line).
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Even if things went really badly with bilateral, losing function of both legs doesn't sound likely to me. If something went wrong, it'd be isolated to one leg. Surely it's possible, but it's like being struck by lightning twice.
Haha, are you sure? But let's say only one leg got crippled but we're still a long way from complete consolidation, then would we have the mental capacity to complete the lengthening of the fine leg that's still broken in frame?
Also, I'm under the impression that doing one leg at a time could give us a much better recovery since with both legs broken, our body will make double efforts for the bones healing. I'm no doctor, but it's my unprofessional opinion. So overall seems safer and less chance of short-term/long-term complications. What are your thoughts on this?
Correct. Externals are superior when it comes to complex deformities or fractures, since they offer six axis of manipulation, which is just not possible with a telescoping internal rod. It's an easier decision to say "internals only for cosmetic patients" since it's relatively simple and it offers a more pleasant experience (and since it's elective surgery, the high price can be justified).
And reaming of bone canal with internal doesn't sound like a good idea.
As you may have seen elsewhere, I think it's relatively safe as long as lengthening is around 20% of the initial bone length. What's most important seems to be: stay near clinic during distraction, regular PT, diet conducive to bone healing, maintain weight, slow down distraction rate if necessary, and to not hesitate to ask the clinic for any reason if you suspect something is wrong (there are no stupid questions when your limbs are on the line).
I mean that the other guy said the only downside of unilateral is we have to decide on a length while lengthening the first leg and stick to the same length in the other leg afterwards even if there are complications with the second leg. So I was wondering if we can completely eliminate this downside by staying in the safe zone of 20% of the initial bone length.
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But let's say only one leg got crippled but we're still a long way from complete consolidation, then would we have the mental capacity to complete the lengthening of the fine leg that's still broken in frame?
To me, it's an uncommon complication to become crippled from LL (especially in the hands of a good doctor), so I'll cross that bridge if I get to it at all. Knowing the worst case scenario is sensible, but I'm not going to plan for every potential bad outcome. It'll lead me to inaction if I do.
Also, I'm under the impression that doing one leg at a time could give us a much better recovery since with both legs broken, our body will make double efforts for the bones healing. I'm no doctor, but it's my unprofessional opinion. So overall seems safer and less chance of short-term/long-term complications. What are your thoughts on this?
It's true that the body will require more nutrition for bone healing, and that's something to consider. But others have done it successfully, so I'd rather get it over with sooner if I can. Although I'm not in a rush (I don't have a deadline on when to resume my life after starting my journey), I don't want to spend too much time if it's unnecessary -- big surprise, I know!
And reaming of bone canal with internal doesn't sound like a good idea.
Honestly, most everything about CLL sounds like a bad idea. But hey, we're not pioneers, others have done it. That's good enough for me.
I mean that the other guy said the only downside of unilateral is we have to decide on a length while lengthening the first leg and stick to the same length in the other leg afterwards even if there are complications with the second leg. So I was wondering if we can completely eliminate this downside by staying in the safe zone of 20% of the initial bone length.
That is indeed a downside of unilateral. If something goes wrong with bilateral, or you just can't take the pain just before reaching your goal, you can stop distraction on both legs. Like you said, keeping inside the safe zone would minimize the risk. If there's pain, you can also slow down distraction rate too.
A. Lecter, just noticed that the thread was sort of derailed (slow day at work, can you tell?). Hope that some of this is helpful, I think it reaffirms your decision. I believe that it's a good one.
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To me, it's an uncommon complication to become crippled from LL (especially in the hands of a good doctor), so I'll cross that bridge if I get to it at all. Knowing the worst case scenario is sensible, but I'm not going to plan for every potential bad outcome. It'll lead me to inaction if I do.
It's true that the body will require more nutrition for bone healing, and that's something to consider. But others have done it successfully, so I'd rather get it over with sooner if I can. Although I'm not in a rush (I don't have a deadline on when to resume my life after starting my journey), I don't want to spend too much time if it's unnecessary -- big surprise, I know!
Honestly, most everything about CLL sounds like a bad idea. But hey, we're not pioneers, others have done it. That's good enough for me.
That is indeed a downside of unilateral. If something goes wrong with bilateral, or you just can't take the pain just before reaching your goal, you can stop distraction on both legs. Like you said, keeping inside the safe zone would minimize the risk. If there's pain, you can also slow down distraction rate too.
A. Lecter, just noticed that the thread was sort of derailed (slow day at work, can you tell?). Hope that some of this is helpful, I think it reaffirms your decision. I believe that it's a good one.
Do you know the differences between the HEF and the TSF? What external fixators do Solomin and Kulesh work with? Are they all hexapods (I'm assuming that means the six-axis)?
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Do you know the differences between the HEF and the TSF? What external fixators do Solomin and Kulesh work with? Are they all hexapods (I'm assuming that means the six-axis)?
HEF is not a hexapod, here's a photo (https://imgur.com/gallery/uNeVG7d), from fivetenneeded2016's diary (http://www.limblengtheningforum.com/index.php?topic=5396.msg84598#msg84598). I'm not 100% sure, but here's what I believe the HEF is (source (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504087/)):
Hybrid fixation also refers to the substitution of half pins for some wires when using an Ilizarov ringed fixator, a technique developed in Italy.
If you look again at the first photo, you'll notice that there are some half pins (thicker, doesn't penetrate to other side) compared to wires (thinner, goes all the way across to other side of ring). Classic Ilizarov is all wires (https://imgur.com/a/9alnYKu), though some doctors don't call it HEF but still incorporate a few half pins. This design makes it more stable, less prone to misalignment since it's more rigid. In conclusion, hybrid solution is preferred:
While all wire or all half pin frames can be correct if applied with sound mechanical principles, we prefer hybrid frames in which wires and half pins are used optimally.
Dr. Solomin is the consultant and rights holder for the Ortho-SUV (http://ortho-suv.org/index.php?option=com_content&view=article&id=110&Itemid=74&lang=en) (noted in Conflict of Interest section (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4395562/)), which is a hexapod; you can see Jim in them here (https://imgur.com/gallery/wLrlm), used during correction (simpler frames during distraction (https://imgur.com/gallery/YypeM), no diagonal struts).
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Thank you very much, as always, Android.
By the way, I found further information on the HEF on Pili's doctor page here.
This technique is an evolution of the Ilizarov technique. It is a very versatile technique which can correct deformities and can generate large amount of bone lengthening. Late consolidation, a feared complication in bone lengthening techniques, is easy dealt with compression of the not well developed new formed bone. In fact bone grafting is rarely necessary with this technique. This can not be achieved with most of the intramedullary (internal) devices. The lengthening speed is of 0.5-0.75 mm/day for a single osteotomy and double (up to 1.5 mm/day) for a double osteotomy. This can also be an advantage with respect of intramedullary (internal) devices.
The HEF has to be kept in place for the all duration of the treatment till full consolidation is achieved. Usually it takes around 100 days for lengthening up to 8 cm and 5-6 months to achieve a full consolidation. During the lengthening time the patient will walk with crutches and follow our rehabilitation protocol to avoid muscle contractures such as ballerina foot. With HEF these complications are better dealt due to the possibility of passive physiotherapy to stretch the muscles. Even though in theory a full weight could be applied to the frames, walking with crutches is advised. As the consolidation progresses and as the patient gains confidence a full weight can be applied. When the HEF is removed a splint is applied to the leg to protect the new formed bone. Sport activities are usually possible within 6 months. The recovery is usually complete.
Possible risks of this procedure
- Pin and wires tract infection. This is usually a very superficial infection which is treated with local disinfectants or antibiotics and usually recovers fully without serious problems.
- Delayed bone consolidation which rarely needs a second procedure such as bone grafting
- Deformities are easy dealt acting on the frame
- Neurovascular problems due to blood vessels or nerve stretching. This complication have never been experienced by our patients but are described in the literature.
- All these complications, with the exception of pin and wires tract infection, is common to all bone lengthening methods including intramedullary (internal) nails.
Not sure how much is just them selling their fish, though.
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I have had many bad experiences in consultation with LL doctors. I have visited some doctors I didn't like for different reasons (Guichet and Monegal). I will post more about my findings for the community. Advice: stay away from them.
For how long have to wait to schedule a consultation with Dr Pili? Work makes me difficult to find spots but short holidays now. Is Dr Pili better than Guichet and Monegal? I haven't visited yet but looks good. If he isn't I will quit my idea of doing LL. I can't afford Paley or Rozbruch and won't risk my legs.
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Pili told me it takes 7-11 months until the frames come off for only 5-6cm with HEF...they should update their website
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I have had many bad experiences in consultation with LL doctors. I have visited some doctors I didn't like for different reasons (Guichet and Monegal). I will post more about my findings for the community. Advice: stay away from them.
For how long have to wait to schedule a consultation with Dr Pili? Work makes me difficult to find spots but short holidays now. Is Dr Pili better than Guichet and Monegal? I haven't visited yet but looks good. If he isn't I will quit my idea of doing LL. I can't afford Paley or Rozbruch and won't risk my legs.
What's wrong with Guichet?
Why not go for Catagni? He's Pili's mentor.
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What's wrong with Guichet?
Why not go for Catagni? He's Pili's mentor.
Catagni doesn't treat men without constitutional short stature (160cm and under, I think), but he works with Pili when Pili is having his CLL patients.
FiveTenNeeded would know better about their relationship. Might as well ask in his diary.
And "what's wrong with Guichet"? Have you never read Unicorn's diary?
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Catagni doesn't treat men without constitutional short stature (160cm and under, I think), but he works with Pili when Pili is having his CLL patients.
Didn't know that. Dr. Pili looks so young and inexperienced in LL.
And "what's wrong with Guichet"? Have you never read Unicorn's diary?
I actually wanted to know from his perspective since he got the bad impression during his personal consultation.
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Didn't know that. Dr. Pili looks so young and inexperienced in LL.
I actually wanted to know from his perspective since he got the bad impression during his personal consultation.
You're right. I shouldn't have phrased it that way. I need some coffee.
That was a fair and normal question.
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IMPORTANT UPDATE:
I send doc Pili an e-mail regarding the ATL surgery and other subjects. Here are his responses:
ME:
Ciao, Dottore Pili. Come stai?
I've been hearing a lot about you on some forums about Limb lengthening surgery and I'm really curious about some things:
1- Why is ATL surgery needed?
Some doctors and patients say that is not quite necessary and fairly dangerous.
2- Is there a possibility that you rise your prices in the future? I'm aware that LL with HEF is around 20k € and that's a reasonable price but I'm worried that it could rise because I'm not from Europe and that means that I have to save quite a lot of money.
3- I want to stay in Italy until my recovery is finished. Do I need a visa? How can I obtain it?
DR PILI:
1 - ATL surgery is needed to avoid equinus foot deformity.
It is not dangerous at all in my experience as I never had ant serious complication following this surgery.
If you get equinus foot during lengthening (80% chance over 4-5 cm lengthening) it is necessary to achieve a good alignment, to walk during the treatment and avoid long recovery time after frame removal.
2 - It is possible for me to rise the price as I have many requests… I can keep the price for you if you will come within 1 year or so…
Do not forget you need a 30 k budget at least considering medical all costs.
3- You need a visa if you come from outside the EU, where are you from?
- A Lecter
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Rising the price only because he has much requests seems unethical to me.
Also, his answer about atl is completely wrong, first of all because atl causes permanent and severe weakness (the bigget the at lengthening the bigger the power deficit) and also because at 5cm lengthening not only 80% patients need atl but noone.
If Pili's patients really need atl ath so low amounts of lengthening then he is clearly doing something wrong. I personally think that he does atl without any second thought like doctors did before 20-30 years.
The same way of thinking had my LL doctor who ruined my legs before my second doctor did at shortening to me and giving my life back.
After all these, I really start to doubt about Pili.
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Rising the price only because he has much requests seems unethical to me.
Also, his answer about atl is completely wrong, first of all because atl causes permanent and severe weakness (the bigget the at lengthening the bigger the power deficit) and also because at 5cm lengthening not only 80% patients need atl but noone.
If Pili's patients really need atl ath so low amounts of lengthening then he is clearly doing something wrong. I personally think that he does atl without any second thought like doctors did before 20-30 years.
The same way of thinking had my LL doctor who ruined my legs before my second doctor did at shortening to me and giving my life back.
After all these, I really start to doubt about Pili.
To be precise, he said 40-50% (http://www.limblengtheningforum.com/index.php?topic=5412.msg84792#msg84792) for 5cm, and "80% for over 4-5cm".
But it is really weird how opinions on ATL can differ so much among orthopedic surgeons. Did you see Giotikas' reply (http://www.limblengtheningforum.com/index.php?topic=5412.msg84927#msg84927)?
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What's wrong with Guichet?
Why not go for Catagni? He's Pili's mentor.
MY EXPERIENCE WITH DR GUICHET
Dr Guichet is serious and rigorous. He took the time to give me a good depiction of what I could expect if I did LL with him. He is serious about the preop, training requirements and motivation letters and preop agreements. This isn’t bad. I like Guichet’s seriousness but he seemed very greedy and money-driven. Some people think preop training is bull to make money, and I think the same. He had money in his eyes. He looked like a financial rapist who feels entitled to ENORMOUS amounts of money for routine tests. He was also cold and detached and I got the impression he would financially rape me if I got a complication (Unicorn). He was very proud of himself and his achievements, as if he was a god with no mistakes. He admitted he had had complications but blamed patients of their bad luck. Serious, responsible, rigorous but too proud of himself, greedy, callous, and detached. I decided to trust my guts and took him out of my list.
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Rising the price only because he has much requests seems unethical to me.
Also, his answer about atl is completely wrong, first of all because atl causes permanent and severe weakness (the bigget the at lengthening the bigger the power deficit) and also because at 5cm lengthening not only 80% patients need atl but noone.
If Pili's patients really need atl ath so low amounts of lengthening then he is clearly doing something wrong. I personally think that he does atl without any second thought like doctors did before 20-30 years.
The same way of thinking had my LL doctor who ruined my legs before my second doctor did at shortening to me and giving my life back.
After all these, I really start to doubt about Pili.
This makes me feel depresed. I feel short but I don't want to risk my legs. I think I will finally quit this LL idea
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This makes me feel depresed. I feel short but I don't want to risk my legs. I think I will finally quit this LL idea
Take a look at elevator shoes (http://www.limblengtheningforum.com/index.php?topic=5324.0). Essentially the same results as CLL, without any of the pain involved, for the vast majority of social situations.
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Take a look at elevator shoes (http://www.limblengtheningforum.com/index.php?topic=5324.0). Essentially the same results as CLL, without any of the pain involved, for the vast majority of social situations.
I've been a lift-wearer for 8 years. It does help. But deep in my heart, I feel like a faker and inferior to other real taller people.
This makes me feel depresed. I feel short but I don't want to risk my legs. I think I will finally quit this LL idea
I was also in a real uncertainty for years before. I tried acceptance but didn't work out. Eventually I realize that being the height I am now isn't an option and that at my current height, I consider myself as a loser in this life. I will never feel fulfilled no matter how rich I get or how many pussies I have. I think I will take that leap of faith at a nothing-to-lose position. I am already crippled now.
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To be precise, he said 40-50% (http://www.limblengtheningforum.com/index.php?topic=5412.msg84792#msg84792) for 5cm, and "80% for over 4-5cm".
But it is really weird how opinions on ATL can differ so much among orthopedic surgeons. Did you see Giotikas' reply (http://www.limblengtheningforum.com/index.php?topic=5412.msg84927#msg84927)?
Yes. And dr Giotikas answer is the right one. Paley and any other respectable doctor avoid atl at all costs.
Only Catagni, Pili, Indian butchers and some old doctors (like the one I did LL) are doing atl.
Noone else.
So Pili does atl without even knowinfmg how vad it is for the leg and how serious permanent deficits leaves.
So imo he seems to not be the right doctor for me, even though I want femur LL. If I dont trust a doctor then I dont trust him in anything.
We'll see about Giotikas. He seems promising.