Hi guys,
I had surgery only 2 months ago. I chose tibial lengthening with the LON method. I only wanted 5cm, so it seemed to be a fairly safe option with the internal nail supposedly preventing misalignment. I have just finished lengthening around 5 cm and had my tibias x-rayed (see below). Anyway, as you can see in the x-rays the cut of the left tibia was very poor and left me with very little posterior bone above the cut. On the right tibia, the cut was a little bit better but left me with a posterior fracture where the yellow arrow is. As a consequence, it seems that there is not enough strong posterior bone on either leg to guide the upper part of the tibia along the nail. I suppose, due to the tightness of muscles, ligaments, and lack of bone to force the tibia above the cut to stay in alignment with the nail, it has become misaligned with the tibia below the cut by about 10 degrees on both legs (the angle should be about 90 degrees, I assume). As a side-note, the misalignment is also clearly visible from the outside as big hard bumps in the skin (no pics, sorry). Also, the knees are sore all the time, especially the left knee. I think this has to do with how the external fixators were positioned on my legs. It is as if the angle between where the fixator is attached to my ankle and where it is attached to my knee is wrong. Especially on the left leg, it seems as if it hinders me to fully extend the leg.
x-rays:
https://imgur.com/sP3Rl3S
https://imgur.com/bS4g1C0
I don't understand how this could happen. The doctor told me before surgery, that I have very good and strong bones, so it must be that he did not apply enough force to break the tibias cleanly. Also, I think he cut the bone too high. What is the point of having an internal nail to avoid misalignment, when there is not enough bone around the nail to force the tibia in alignment? Of all the complications, I contemplated before surgery, this never ever crossed my mind, and I cannot seem to find something similar on this forum. I will not write the doctors name here at this point, because I am dependent on his care, and I am not sure he approves. I hope you understand.
Unbelievably, the doctor has told me that I do not need to worry, as the new bone will magically correct the align by itself. But I am not sure what he means by that. Sure new bone will connect the parts somehow. But I highly doubt that it can bring down the angle from 10 to 0 degrees because it seems that this would require some serious force to overcome the opposing forces that facilitated the misalignment in the first place. I am deeply worried that if this will heal with the 10-degree misalignment, as I cannot stand straight. After consulting with an orthopedist that is not a LL specialist, he expressed the same concern and said if the misalignment is not reversed, I will not be able to extend my lower leg fully and will, therefore, have a permanent slight bend in my knees. Also, I suppose, having a misalignment will lead to stress on joints and back because of improper load bearing?
Has anyone had a similar problem? What can be done to resolve this? How much time do I have to fix this before it consolidates with misalignment? I would really appreciate if the community would give me some solid advice that I can bring up when I talk to the doctor next week.
How fked am I? What to do about tibial misalignment?
Hi again guys, thank you for all the input.
Now regarding Stryde and Precice2. FYI, this surgeon performs both of these as well. So if anyone thinks that the Nuvasive "quality" stamp somehow eliminates surgeons that make this type of elementary mistakes are sorely mistaken. Also, I have an internal nail, so I cannot see any reason why the situation would be any better had I chosen Stryde or Precice2. The problem is not the type of nail that is used, but the fact that there is not enough bone in the tibia above the cut to keep it in alignment with the nail itself. I do not see why using Stryde would eliminate this problem. But I may be wrong.
I am seeing at least one more doctor this week. But I do not expect him to state anything but the obvious. The doctor who performed this surgery did not apply enough force and/or used an inappropriate instrument (maybe a chisel that was unsharpened). Again, the doctor complimented me on my strong bones before surgery. Furthermore, due to my diet and exercise program, I have always known that I have a strong skeleton, period. I always thought this would be an advantage for LL surgery, but obviously not with this doctor.
I have never heard of procurvatum. But just to be clear, if I want to stand up without falling backward, I will have to keep my legs as the person to the right in the pic below, because I cannot fully extend my knee. I stopped lengthening a few days ago after a 2 month lengthening phase. Soon, I will remove the external frame and the internal nail will be locked. I am thinking that this might be a good time to somehow lock the internal nail in a way that aligns both tibias?
https://imgur.com/a/fm2iDK9
Please keep the comments coming.
Hi again guys,
Let me just say that I perfectly understand why so many sent me PM:s asking for the name of the doctor. However, I strongly feel that I should give the doctor a chance to change his mind first and come up with a solution. Even though it is hard to admit it, what is done is done, and all that matters now is how he deals with it. But, let me at least assure you that he is not one of the more common doctors that you so often read about in patient diaries. I am really thankful to the other doctor that I met last week who raised the alarm whilst it is still time to do something about it, without him, I would most likely never found out until the misalignment was a permanent disability.
I have another question for the forum. Let us say that he refuses to deal with it. What European doctor would you recommend to fix this?
Quote from: cobalt on June 10, 2019, 12:24:54 AMNuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.
But my point is that the break of the bone is exactly the same procedure whether or not you are using LON or Stryde. It is the most basic and fundamental step which all lengthening processes with internal nails rest upon. So it is really not the question of being an expert in one method but not the other.
Thanks for the suggestions. I have contacted many of the doctors suggested in this thread. Hoping to hear from them soon. Meanwhile, I am very disappointed about how this could have happened and kept in the dark.
I would still be grateful if anyone could give me an idea on how time sensitive this surgical correction is?
Do you think that TSF frames would be the only option? I would have to wear them for the whole consolidation period, right?
Thanks for the reply. I already have a nail, albeit not an expanding one. But since the lengthening is finished this would not matter. Is it not possible that when removing the external fixator, one could reduce the misalignment and then fixate the new alignment by locking the nail in the new position using screws?
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.
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.
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.
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.
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