Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[..]

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.

[Android]

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 (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).

[..]

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.

[Android]

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.

[myloginacct]

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)?

[Android]

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, from fivetenneeded2016's diary. I'm not 100% sure, but here's what I believe the HEF is (source):

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, 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 (noted in Conflict of Interest section), which is a hexapod; you can see Jim in them here, used during correction (simpler frames during distraction, no diagonal struts).

[myloginacct]

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.

[badexperience]

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.

[Great321]

Pili told me it takes 7-11 months until the frames come off for only 5-6cm with HEF...they should update their website

[..]

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.

[myloginacct]

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?

[..]

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.

[myloginacct]

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.

[Argent_Lecter]

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

[Body Builder]

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.

[myloginacct]

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% 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?

[badexperience]

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.

[badexperience]

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

[myloginacct]

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. Essentially the same results as CLL, without any of the pain involved, for the vast majority of social situations.

[..]

Take a look at elevator shoes. 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.

[Body Builder]

To be precise, he said 40-50% 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?

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.