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Author Topic: How fked am I? What to do about tibial misalignment?  (Read 7650 times)

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doomsday

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Re: How fked am I? What to do about tibial misalignment?
« Reply #31 on: June 11, 2019, 06:45:14 PM »

Non of the people sitting here will be able to tell you whats going on. It seems bad but not too bad. Definitely you need to get a second opinion from a different doc.
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Jim_dabarber

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Re: How fked am I? What to do about tibial misalignment?
« Reply #32 on: June 12, 2019, 12:20:18 AM »

That alignment is really bad man. Correction needs to be done asap before the bone starts to bridge. If that were to happen then a surgery to rebreak the bone would have to be made. Your misalignment started from day 1 of nail insertion. Your doctor should have kept the alignment in better position. Only thing to do now is instal an external frame that allows you to manipulate the degrees and angles of the bone in order to re-align them together. The nail would have to be taken out first because at this point it will be in the way and you risk the chance of fracturing the bone from unwanted pressure elsewhere. Corrections would then be able to be done but only slightly each day. Doing corrections too fast you risk the chance of nerve damage. Once corrections are done and the bone is perfectly aligned then a nail can be re inserted and locked and external frames taken off. Good luck man. Any doctor in the US should be able to help you, Dr Giotikas has done a good job on a female patient on this forum and of course Dr Kulesh and Dr Solomin my doctors in Russia will be more than happy to help you. Please get help asap.
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165 cm pre LL / 174 cm after undergoing 4cm on tibias and 5cm on femurs, Cross-Lengthening with Dr. Kulesh and Dr. Solomin / http://www.limblengtheningforum.com/index.php?topic=5016.0

dinozzo

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Re: How fked am I? What to do about tibial misalignment?
« Reply #33 on: June 12, 2019, 09:22:58 AM »

Why was the bone broken so high, and why don't you wanna mention the doctor? if he is a good doctor then it's fine mistakes can happen everywhere even with the best doctors.
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #34 on: June 12, 2019, 04:02:33 PM »

I got the question, why I did not react to this earlier. Well, here is what happened. First of all, I trusted the doctor not to hurt me. Is that being gullible? In hindsight, yes. But everyone involved in the surgery acted nice long after surgery was and everyone told me everything went great during surgery. I have never done this before and there were no obvious signs that they were hiding anything. I come from a country where the trust level is high, even lawyers are considered trustworthy and doctors definitely tops the list of trustworthy professions. It is inconceivable to me that doctors that swear to do no harm first, would not at least be truthful about how the operation went. Of course, all of this may not come down to deception but rather incompetence and lack of prudence on the doctor's part. Regardless, it is unacceptable.

The first x-rays we took, were taken from the front and the side. I contacted the doctor and asked him to send me them the day after. He then actually sent me femur x-rays of another person. I got back to him and he apologized and then he only sent me a picture of his computer screen where he had my frontal x-ray. But this problem is really only visible from the side, so I never saw anything that would alarm me. Truthfully, I was not looking for anything wrong, since he assured me everything went perfect during operation and I trusted him. I was also embarrassed on his part for sending me the wrong file, so I did not press it any further.

When the second x-rays were taken, for some reason, they were only taken from the front. Again, I trusted the doctor to tell me the truth at all times. I am not big on conspiracy theories, so I found an innocent explanation for it. I even thought it was positive since x-rays are not exactly healthy for you.

The third x-rays were taken from the front and the side. Interestingly, before sending me the x-rays, the doctor called me up and told me that I had reached 6 cm and because of premature consolidation I should double the distraction. We actually spoke for several minutes on the phone, until I finally convinced him that he had me confused with another patient (again!). He apologized and 3 days later, after reminding him, I got the x-rays. But the side x-ray was not taken with the tibia flat on the surface as the ones I posted at the beginning of the thread. Instead, they were taken at an angle where most of the tibia was covered by the external device. So you could not, for instance, see the posterior part of the bone at all. Because of this angle, the misalignment in the front did not show as well as in my latest x-rays. It is also probably so that the misalignment has increased the more I distracted. Still, I asked him about it, and he told me that it was not a problem, because new bone formation will correct the align.

The fourth x-rays, taken less than a week ago, I did at a completely different clinic. This time the side x-rays were taken with the foot and tibia completely flat on the side. It revealed everything. Also because I did the x-ray somewhere else, I also got another doctor's opinion for the first time. I have asked my doctor to comment on them, but the only thing he said was that I have reached my distraction goal on both legs, that the distraction is even and that new bone formation was good (!). He said he was busy with other things when I got hold of him, but promised to come back to me this Monday. There was no point in me pushing him at that point. However, as of today, Wednesday, he has still not commented on the x-rays. The only thing he said, after I contacted him on Monday through IM, is that they would arrange to remove my external fixator.
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dinozzo

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Re: How fked am I? What to do about tibial misalignment?
« Reply #35 on: June 12, 2019, 05:52:08 PM »

And you still don't wanna say his name, are you looking for some other patients to get cripled? go to another doctor.
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PANDA:BEAR..

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Re: How fked am I? What to do about tibial misalignment?
« Reply #36 on: June 12, 2019, 06:00:42 PM »

And you still don't wanna say his name, are you looking for some other patients to get cripled? go to another doctor.

If he cannot tell us the name ... can he mention the country...???
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #37 on: June 12, 2019, 07:01:35 PM »

I am sorry guys  :( until I know where my doctor stands and what he intends to do about my situation, I will not reveal the name or the country (there are at most only a few well known LL doctors in each country anyway). I have to at least give him the opportunity to give his side of the story and explain why this happened and come up with a solution. As previously mentioned, he has always come across as a nice person, even though he often seems overworked. People say that I should just switch doctors like that. Setting the high cost aside, how do I know I can trust the next doctor? Let me assure you that there is nothing wrong with this doctor's credentials. Based on them, I would never have believed this could happen. If there is any help, I can reveal that he is not a US doctor.
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PANDA:BEAR..

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Re: How fked am I? What to do about tibial misalignment?
« Reply #38 on: June 12, 2019, 07:06:50 PM »

I am sorry guys  :( until I know where my doctor stands and what he intends to do about my situation, I will not reveal the name or the country (there are at most only a few well known LL doctors in each country anyway). I have to at least give him the opportunity to give his side of the story and explain why this happened and come up with a solution. As previously mentioned, he has always come across as a nice person, even though he often seems overworked. People say that I should just switch doctors like that. Setting the high cost aside, how do I know I can trust the next doctor? Let me assure you that there is nothing wrong with this doctor's credentials. Based on them, I would never have believed this could happen. If there is any help, I can reveal that he is not a US doctor.


Thanks for telling us ... your situation... we hope you recover well... please remember everyone is here to help you as much as we can ... god bless!
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dinozzo

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Re: How fked am I? What to do about tibial misalignment?
« Reply #39 on: June 12, 2019, 07:38:32 PM »

I assume it's in turkey, since they all purpose the Lon method. Hope you will get better and find a better surgeon to fix it.
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #40 on: June 14, 2019, 09:52:17 AM »

Hi guys, some updates:

I have gotten responses from several doctors.

Dr. Pili and Dr. Catgani want to do TSF frames to correct deformity plus compression-distraction to deal with lack of bone growth. The posted x-rays were taken right after I finished lengthening about 70 days after surgery. I am hoping bone formation will increase now that I stopped lengthening and try to walk more with crutches. Is my bone growth really that bad? There is clearly new bone forming, but maybe at rate that is too slow. What do you say?

Professor Dr Krettek (Hannover), Dr. Giotikas and Dr. Monegal want to remove the external fixator, realign the nail to correct the misalignment and then put poller screws to prevent flexion deformity (procurvatum) going forward.

TSF frames is a huge commitment, which I am not sure I can handle. My sleep with these sleek monorails have been definitely been compromised, so I can't even imagine what it would be like with TSF frames. Also, it seems unlikely that I can go back to work with TSF frames. So it would mean 12 months off work, maybe without any work compensation from the government. I think I am going to have to try alternative 2 first, and if it does not work, I will have to bite the bullet and have the TSF frames at a later stage. What do you think?

Also, armed with all the responses I have gotten from doctors, I am going to confront my doctor today and hear his explanations and suggestions.
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Ghostfish

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Re: How fked am I? What to do about tibial misalignment?
« Reply #41 on: June 14, 2019, 10:55:33 AM »

Hi suddenurge

I am so sorry that you are suffering from a serious complication.  It is certainly caused by the doctor.  Dr. Pili/Dr. Catgani seem to have good reputation and Dr. Giotikas is another new doctor growing reputation these days.  They seem to be trustworthy.  I don't know very well about Dr. K and Dr. M. Although I am not a doctor and don't like/recommend TSF frames, it may be a better solution for you.

I think your bones already have procurvatum or some sort of deformity.  Preventing it from going worse is not the best option.  I think you need to correct it, which can be done ONLY (I believe) by external method.  Dr. K, G, M's suggestion is only to prevent it from going worse and may correct some misalignment, which I think is not good enough.  Since you already finished lengthening, you just need to consolidate your bones which may take 3-4 months depending on your bones.  Dr. G also can do external method.  Anyway, it is my thought.

Good luck!
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Great321

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Re: How fked am I? What to do about tibial misalignment?
« Reply #42 on: June 14, 2019, 11:07:50 AM »

Nice that you already have several responses!

It's difficult to see much since your monorails cover much of the X-rays. Do you take Vitamin D supplements?

With the exception of a couple of days during these 8 months I was actually able to sleep normally with the TSF frames. But that's maybe different for each person depending on how they are used to sleep. I don't know how long it takes to correct such a deformity but after the alignment, I'm pretty sure you could replace it with an internal nail again (which costs about 7k plus again though). Fully externals could take even 7+ months more for you. I don't recommend that to anyone.

TSF frames are a sure thing, they are very stable..you can shorten and lengthen again if necessary, falling down (I did once) or bumping into things is no problem either. But as 3 doctors offered Alternative 2...it can't be wrong either.

Consider that you could apply for a cost takeover (Kostenübernahme in German) from your health insurance. The chances are low but not impossible. What matters is that you apply before the next surgery. Don't know though if they pay if you do the surgery before their final response/approvement. Because in your case it could be medical reason now.

Which of the doctors of the seconde alternative would be convenient for you? From what I've read Dr. Monegal doesn't seem very reputable in the way he tries to convince possible patients. I would either choose Dr. Krettek (even if I never heard of him personally but ...it's a German clinic which is experienced in deformities but Germany is also more expensive in general) or Dr. Giotikas whom I trust as his patient, his main area are also deformities after accidents and such and you can always contact him with questions even after the surgery.

Good luck with your doctor today. He might offer you the same treatment one of the other doctor's recommended but then it's up to you if you trust him again. I hope he won't be rude to you since you asked other doctor's which is kind of showing to him that you don't trust him that much anymore.
« Last Edit: June 14, 2019, 11:40:07 AM by Great321 »
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #43 on: June 14, 2019, 04:47:07 PM »

Nice that you already have several responses!

It's difficult to see much since your monorails cover much of the X-rays. Do you take Vitamin D supplements?

Comment: Yes I do

With the exception of a couple of days during these 8 months I was actually able to sleep normally with the TSF frames. But that's maybe different for each person depending on how they are used to sleep. I don't know how long it takes to correct such a deformity but after the alignment, I'm pretty sure you could replace it with an internal nail again (which costs about 7k plus again though). Fully externals could take even 7+ months more for you. I don't recommend that to anyone.

Comment: For 5 cm at least 10 months is needed for consolidation, I have been told. If bone formation is a bit slower, it takes even longer. 10-12 months with TSF must be unbearable.

TSF frames are a sure thing, they are very stable..you can shorten and lengthen again if necessary, falling down (I did once) or bumping into things is no problem either. But as 3 doctors offered Alternative 2...it can't be wrong either.

Comment: TSF frames has a lot of benefits with its size being its one really serious drawback. To be fair, Doctor Monegal did not go into as much detail as the other doctors, but I certainly interpreted what he said as something along with solution 2.

Consider that you could apply for a cost takeover (Kostenübernahme in German) from your health insurance. The chances are low but not impossible. What matters is that you apply before the next surgery. Don't know though if they pay if you do the surgery before their final response/approvement. Because in your case it could be medical reason now.

Comment: Yes it is more of a medical reason. Maybe if my home country cannot offer some form of solution (not very likely), as a citizen of the EU, I will have to look into that.

Which of the doctors of the seconde alternative would be convenient for you? From what I've read Dr. Monegal doesn't seem very reputable in the way he tries to convince possible patients. I would either choose Dr. Krettek (even if I never heard of him personally but ...it's a German clinic which is experienced in deformities but Germany is also more expensive in general) or Dr. Giotikas whom I trust as his patient, his main area are also deformities after accidents and such and you can always contact him with questions even after the surgery.

Comment: I would probably also do it with Dr. Giotikas.

Good luck with your doctor today. He might offer you the same treatment one of the other doctor's recommended but then it's up to you if you trust him again. I hope he won't be rude to you since you asked other doctor's which is kind of showing to him that you don't trust him that much anymore.
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Kenda

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Re: How fked am I? What to do about tibial misalignment?
« Reply #44 on: August 12, 2019, 09:09:12 PM »

Oh no no no no
I know the worst doctor in the world performed precice surgery with Nuvasive techs and ended up bending bone...
Even with Stryde we must choose top notch doctors, otherwise those bad doctors will give us horrible results
Don’t go to inexperienced doctors

Who is a surgeon that gave complications with stryde??
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Steffan

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Re: How fked am I? What to do about tibial misalignment?
« Reply #45 on: August 13, 2019, 02:45:32 AM »

I have been told that lengthening the femur is better since the bone is a lot thicker.
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shegella

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Re: How fked am I? What to do about tibial misalignment?
« Reply #46 on: May 26, 2020, 11:26:31 AM »

Need some uprage for this dailly.

How things can be fixed?

ıF we got problem ,how can we gonna fix?

so important but cutted dailiy
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marathonrunner

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Re: How fked am I? What to do about tibial misalignment?
« Reply #47 on: May 29, 2020, 09:43:05 AM »

Kenda, you can PM me if you want to know A surgeon that that had complications with stryde.

I don't know about other's but I can give you my experience with it.

Actually you can probably just search my screenname and find the posts.

Tameki is right, just because a doctor has stryde doesn't mean they know what they are doing.
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seriouslyinjured

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Re: How fked am I? What to do about tibial misalignment?
« Reply #48 on: May 29, 2020, 12:59:51 PM »

me,     dr ozgur from wannabe taller would have crippled me he used stryde charged me 55000 euros and without surgical intervention from giotikas i would be wheel chair bound
http://www.limblengtheningforum.com/index.php?topic=64740.0
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184dream

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Re: How fked am I? What to do about tibial misalignment?
« Reply #49 on: June 02, 2020, 01:26:09 PM »

i hope you are safe now  .. ppl lives arent a joke ban scammers
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #50 on: August 12, 2020, 05:30:44 AM »

I don't really use this forum much anymore. But since I still keep getting PMs asking for the name of the dangerously incompetent butcher that permanently wrecked my tibias, his name is:


Özgur Karakoyun, pushed on to me by lying scam artists Wannabetaller

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Hagane

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Re: How fked am I? What to do about tibial misalignment?
« Reply #51 on: August 12, 2020, 05:52:11 AM »

I don't really use this forum much anymore. But since I still keep getting PMs asking for the name of the dangerously incompetent butcher that permanently wrecked my tibias, his name is:


Özgur Karakoyun, pushed on to me by lying scam artists Wannabetaller

there it is
i remember seeing this thread last year; finally got our answer!
i hope youre recovering well and everything got sorted!
@suddenurge now the question is: who is the doctor that saved your leg?

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Bilateral tibia lengthening with Dr Gdalevitch 02/2023
starting height approx 167cm ( morning height)
gained  55.55mm
End height approx just shy of 5 foot 8 ( morning height)

m7liam

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Re: How fked am I? What to do about tibial misalignment?
« Reply #52 on: August 14, 2020, 06:59:46 AM »

So what happened in the end?
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0010010

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Re: How fked am I? What to do about tibial misalignment?
« Reply #53 on: August 24, 2021, 02:16:44 PM »

Sounds like he got it fixed in the end by Dr G. Hell of a lot F'n around though and stress. Poor guy. Rough deal. I completely understand why he wants to move on and not think about it.

It seems like on the 3 cases where this happened (and Dr G has had to fix) the nail has been put in at the wrong angle. Right?
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SirStretchAlot

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Re: How fked am I? What to do about tibial misalignment?
« Reply #54 on: August 25, 2021, 10:17:14 AM »

Yeah, Turkey may be cheap, but tragedies like this happen all the time there. I'd say with the exception of Dr Buldu, which I have seen many successful diaries of, stay away from Turkey.
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May 2021: 171cm (evening) > September 2021: 181cm
Wingspan: 170cm | Male: 29 | 65kg | Based in UK
Femurs: Betzbone with Dr. Betz | ITB Release: Dr. Giotikas
Dairy: http://www.limblengtheningforum.com/index.php?topic=66558.0

Activatedxx

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Re: How fked am I? What to do about tibial misalignment?
« Reply #55 on: August 26, 2021, 02:24:35 AM »

Yeah, Turkey may be cheap, but tragedies like this happen all the time there. I'd say with the exception of Dr Buldu, which I have seen many successful diaries of, stay away from Turkey.

Dr Buldu made a mistake to on me and another patient while I was lengthening. It wasn’t permanent but required an extra surgery and longer recovery time for that leg
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5’5 -> 8cm distracted -> 5’8  LON Femur.
Brutal painful process, if considering external femurs please change your mind
Monorails installed may 13: Removed august 8, 2021
http://www.limblengtheningforum.com/index.php?topic=66610.0
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