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.
How fked am I? What to do about tibial misalignment?
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!
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.
Quote from: Great321 on June 14, 2019, 11:07:50 AMNice 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.
Quote from: TemakiSushi on June 10, 2019, 01:37:10 PMOh 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??
I have been told that lengthening the femur is better since the bone is a lot thicker.
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
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.
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
i hope you are safe now .. ppl lives arent a joke ban scammers
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