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Author Topic: How fked am I? What to do about tibial misalignment?  (Read 1122 times)

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dinozzo

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Re: How fked am I? What to do about tibial misalignment?
« Reply #31 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 #32 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 #33 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 #34 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 #35 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 #36 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 #37 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 #38 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 #39 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 #40 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 (Kosten├╝bernahme 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 #41 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 (Kosten├╝bernahme 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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