Dr. Timothy K. Durnin - 9/19/2007

Question
QUESTION: Dear Professor,

I'm a 29-y.o. person with spinal muscular atrophy. I have significant scoliosis and only yesterday I have been to a major Polish specialist in spinal surgery to ask him about my options, because I have noticed a marked increase in the rotation of the spine, and particularly in the degree of rotation and tilt of the pelvis, which is beginning to give me some discomfort also when I lying in bed (and until recently I was able to lie quite comfortably).

The professor said that he can see no win in any surgical intervention, because the major curve is not progressing too much and the spine has mostly stiffened there, and there is no way to set the pelvis straight at this point in time either. When asked about the hips, which by my own judgement are not looking good on the X-ray, he concurred that one of the hips is almost totally dislocated and the head of the thigh-bone of that leg rests only on the edge of the socket, and that probably time will come when it will slide out of the socket completely. I was rather appalled at this, but he seemed not too worried and said that this need not be painful, and in case it should be there is a procedure commonly used in wheelchair-bound patients with hip dislocations, whereby the heads of the thigh-bones are resected and the connection between the legs and pelvis is "loosened".

I have two questions:

1.  Do you know this procedure and could you tell me something about it,  or point to me an internet site where I could read about it? I have tried to search myself, but all I seem to come across is a procedure in which the thigh-bone is fused to the pelvis to create a stiff, motionless connection, or something called Femoral Head Osteoctomy, which appears to fit the bill but comes up only in vet contexts. I have no reason to disbelieve that Polish professor, but I would like to get to know this type of surgery, especially that I find it quite difficult to imagine how the legs can have a chance to align themselves with the body when sitting or lying, or during the transfers between the wheelchair and bed, when the skeletal continuity is thus removed.

2. My other question is actually a request and I am quite aware you are likely to decline it. I will still try. I'd like to ask you to be so very generous and take a look at the X-rays and tell me what you think. Especially about the curves and deformations in the lumbar and sacral sections. I would like to know if you too would judge that I can leave the thing run its course and that I must not fear that those changes should lead to neurological problems any soon.  I realize the limitations of this form of assessment and that it is by no means to be treated as a consultation. But I do hope you will be so extremely good to me as to and spare a moment to look at the pictures. I'm very sorry fo their quality -- they are digital photos of X-ray sheets pasted on a window pane, so that parts of scenery are coming through the white of the pictures. I only have those at my reach right now, though. Maybe they are not completely useless. I could possibly get a better copyat a later time, if it would help. I put them up on imageshack, so you can have an easy and safe access in case you could grant this request.. Here are the links:


http://img236.imageshack.us/img236/9647/200708090004cc5.jpg

http://img120.imageshack.us/img120/9806/200708090005bn2.jpg

http://img236.imageshack.us/img236/5788/200708090006gc2.jpg

http://img120.imageshack.us/img120/2774/200708090007iy7.jpg

http://img120.imageshack.us/img120/582/200708090008wa4.jpg



Yours very sincerely,
Bartek S., Poland

ANSWER: Hi Bartek,

I was happy to review your x-rays and can say that the hip articulation issues are not the major concern. I hope the curve has ceased progressing since further increases in its angle can cause respiratory and cardiovascular issues. Regarding the surgery, I would get multiple opinions since invasive remedies usually create more problems than they solve. I realize you are running out of options but doing nothing can be better than making things worse. I would be real sure of the goal and potential outcomes of the surgery before entertaining it as an option. Getting multiple surgical opinions at several teaching hospitals will prejudice the options towards surgery, understand this first. The goal here is to get the BEST surgical opinion, not necessarily talk you into surgery. From the appearance of the films, it looks like they were taken in another country besides the US, seeking cutting edge solutions will be easier outside America, due to infinite red tape and bureaucratic waste and incompetence. Countries such as India are decades ahead of the US in orthopaedic surgery, getting opinions from here can be beneficial. This was recently revealed on 60 minutes, a news program in the US. I was initially very surprised by the report, but concluded that it made sense after further investigation. From here, all I can do is recommend you proceed cautiously, getting as many opinions as possible, then make up your own mind.

I wish you the best of luck!

Dr. Timothy Durnin

---------- FOLLOW-UP ----------

QUESTION: Hello Professor,

I'm so grateful for your time and interest. You have been very helpful. I was not sure you were going to agree to review the X-rays. They were taken here in Poland -- the whole story is taking piace in Poland, which is where I live. I'm glad that those very poor photos of the X-rays were sufficient to let you form a rough idea of my condition.

I don't really have the means (in every sense, not only financial) to travel in seaking medical advice. It is unlikely I will do that even in other cities of my country, let alone going abroad. Since your opinion seems to go in accord with that of the major (or actually the biggest) Polish authority on spinal surgery, I will follow that advice and accept that the surgery would carry a very considerable life and health hazard and offer little, if any, hope of improving the spine.

I believe the curve will not stop progressing, or should I expect that it will?  I was indeed somewhat relieved to hear that since the last measurement, which came 14 years ago, the main curve had deepened only by about 10 degrees. The Polish professor mentioned something about signs of spontanic vertebral fusion in this state of deformation -- I might have understood him not quite right though. I wonder if such spontaneous fusion is possible and if you can read something like that from my photographs.

My recent, aggravated concern, however, has to do with the low part of the spine and what I take to be a growing misalignment of the pelvis, and I don't think that the single figure (unfortunately, I don't have those archive X-rays) can tell much about the development of that deformation.

Coming back for a moment to the hip issue -- why is it not a big problem, and what can you tell me about the femoral head resection surgery I wrote about?

Thankfully,
Bartek S. from Poland

Answer
Hi Bartek,

It is difficult to comment specifically regarding the hip procedure because I do not have good imaging below the pelvic rim. Even the x-rays of the upper region are difficult to interpret. I trust the judgement of your surgeon, he doesn't sound like a man that will jeopardize your health and future well being unnecessarily. Only time will tell if the curvature gets worse. There is a real possibility that spontaneous fusion might take place and halt further mal-alignments.

I didn't mean to dismiss the hip issue, it's just not life threatening like the mid-back curvature can be. I am sure you are aware that scoliosis can get severe enough to cause heart and breathing issues.  I just wanted to make sure that this was addressed first. Like I said earlier, the hip surgery is difficult to comment on, I don't have enough information to offer a constructive opinion, I don't want to be reckless by advising you one way or another. Leave it up to the guy that knows the most, the surgeon, he seems to be on track.


I wish you the best of outcomes, take care and good luck Bartek!

Dr. Timothy Durnin