confused about congenital scoliosis surgery

[dawndd]

My son has congenital kyphosis. T8 to T12 are fused in the anterior. We went to Shriners in Greenville last month and saw Dr.Allen, who said they don't recommend surgery for kyphosis because the outcomes did not show enough improvement and the risk. He also said that in his opinion my son's condidition would not continue to deteriorate. They recommended an MRI and renal sonagram to rule out other birth defects. He does not have other defects, but Dr. Pete looked at the films (both regular and MRI, I guess) and thinks his curve will continue to worsen. He says that Dr. Allen agrees with him now. He recommends surgery as soon as possible. What he says makes sense, but we are confused because of what Dr. Allen said. We are trying to get a second opinion from Dr. Wattenbarger as soon as possible. The part that bothers me the most right now is that the surgery will only prevent further deterioration but will not improve his existing curve. I hate the thought of him having surgery and not coming out with an improved spine although I realize that preventing further curvature is a laudable goal in and of itself. Has anyone had experience with anterior fused vertebrae?

[KRIS ATKINSON]

Did you say your son already had surgery on his spine? About the improvement in the spine, I have to admit, the doctors tell me that we may/may not get alot of visual improvement in surgery, but without surgery, it is a risk to her health. The sooner we get it done, the less it will continue to worsen. That is very interesting about the discussion between Dr. Allen and Dr. Pete. We met only Dr. Pete. I have also seen Dr. Wattenbarger on numerous occasions. I understand that those 3 doctors are the only 3 in this side of the Carolinas to be well trained in pediatric spine surgery. There are only 8 in all the Carolinas is what Dr. Pete said. Dr. Wattenbarger did not push my daughter to have surgery and she decided completely on her own recently to have it, after he told her all her choices. Basically, he made her and me realize that waiting makes the surgery more difficult for her body and may make the risks increase as the curve increases. Good luck with Dr. W. When do you see him? Take care, Kris

[dawndd]

Dr. Pete told us the same thing: that waiting would result in an increased curve and possible problems with the spinal cord itself. Does your daughter have fused vertebrae (congenital scoliosis or kyphosis)? How old is she? I just found out that Dr. Wattenbarger is out of network. I think we will go anyway for a second opinion. Did you go to anyone else for another opinion other than Shriners and Wattenbarger? Thanks for your response.

[Justin]

3. Prevent worsening of the scoliosis by fusing the spine to the normal vertebrae above and below the wedged vertebra. This is termed "in situ fusion" which means no correction of the existing deformity is hoped for; only that existing deformity will not get worse. Usually the fusion includes the front and back of the spine. The front of the spine may continue to grow even in the presence of a solid fusion in the back (posterior fusion), but it will grow in a corkscrew fashion increasing the size of the rib hump. Doctors call this the "crankshaft phenomenon".


http://www.scoliosis-assoc.org/defau...ec_status=main

I believe that the reason why your son won't see improvement in correction is because the surgeon can only do a "in situ fusion" at that area.
It is because you said that your son developed kyphosis+(scoliosis?) at the site of the congenital defects t8-t12.
Ask your doctor where the kyphosis and scoliosis are situated at in terms of the spine. If not, get a radiology report(mine was free) in the radiology department. The radiologist should say where the curve is at and its measurement in the report.
I'm thinking that the kyphosis your son has is in the area where the congenital defects are therefore they can't do much to correct the curve.


Although, there are people in this forum with congenital scoliosis. Most of the defected vertebraes are in the Lumbar area L4,L-5, Sacrum S1. Most people have scoliosis+kyphosis in the middle spine.(thoracic)
I myself was born with L4-L5 Hemivertebra with Contralateral Bar(Wedged+Solid bone).
My main scoliosis curve is in t7-t11 area and a compensatory curve in lumbar area.
My kyphosis curve is in thoracolumbar area.
My L4-L5 fused vertebrate does not seem to affect the curves at all.

[KRIS ATKINSON]

My daughter has idiopathic scoliosis and kyphosis. I thought the only way to "fuse" bones is through surgery. I take it your son's were fused from congenital scoliosis? I thought maybe he had surgery to fuse them. I don't know anyone else other than Wattenbarger and I know people who have paid several thousand dollars for him to do their child's surgery rather than travel the 2 hours or so 1 way to Greenville. They also said he wasn't on their insurance. Since Shriners is doing the whole thing for free, it might be worth your while to pay the extra to just get the second opinion through Dr. W. You may be able to even just show him the x-rays from Shriners and ask his advice when he examines your son. That would save the cost on x-rays, which he does in his office, and I'm sure charges a good amount for them separately. I believe I have heard of a clinic in Salisbury or Statesville or Winston-Salem also. I think I found them at one time by searching the net for spine surgeons. They may be on your plan for a second opinion. My daughter is 14, will be 15 in September. Kris

[dawndd]

Justin and Kris, thanks so much for your responses.
Justin: Yes, you are right. Since his t8 thru t12 vertebrae are already fused congenitally in the front they are only going to fused them in the back to prevent further worsening of the curve. Iunderstand that there is a form of surgery that would sever the anterior fusion and correct the curve and then fuse the front and back. The doctor we saw at Shriners did not recommend that approach. I'm not sure why it bothers me but it seems sad to me that he will have to go through surgery and not see a visible improvement.
I have a question for you. What is your pain like as an adult? I worry that my son will continue to have pain after the surgery if no correction is attempted since I assume the pain is coming from his lower back trying to compensate for the curve in his upper back.

Kris: Thanks. We are getting a copy our MRI and films from Shriners to bring with us to Dr.Wattenbarger. As you say, we need a really good second opinion even if we don't use Wattenbarger for the surgery. Do you have a surgery date yet? I also have the names of a doctor at Dr. bill Horton at Emory and Dr. Finch at Duke. Have you heard of them? We may see each other at Shriners since our kids may be there at the same time.

[KRIS ATKINSON]

Mary, I have never heard of those doctors you are talking about. Don't be afraid to ask Dr. Pete about them, as he was very honest when I boldly asked him to compare his abilities with Dr. Allen and Dr. Wattenbarger. When and where are you seeing Dr. W? I don't have a surgery date yet. Yours is June 15, isn't it? I assume they mailed you your date. Did you also say your son's fusion is without surgery? I didn't see your answer to that. Glad you are taking advantage of all options and getting the MRI and x-ray you already have to take for the second opinion. Shriners called Wattenbarger's office when we were at Shriners and got the MRI somehow while we were there. He looked at it and ruled out other complications while we were there. Don't know if Dr. W can get the stuff from Shriners the same way. I hope you don't have to go to Shriners to pick them up! Where do you live, anyway? Kris

[dawndd]

The doctors call my son's condition congenital kyphosis even though it is unlikely that the vertebrae were actually fused at birth. I believe it is more likely that the condition was present in utero but the actual fusion took place sometime before his adolescent growth spurt. What was Dr. Pete's response to your question comparing his skills. Good for you for asking. As I understand it, at Shriners you could get either Dr. Allen or Dr. Pete. I think from a skill stand point they are both good. I am frustrated by Dr. Allen's response on our first trip. I can understand changing your opinion based on additional information from the MRI, but he did not say that his opinion was tentative. He said surgery for this type of condition was not done any more because it had not been proven to be effective in the long run. Of course, he was basing this on the assumption that the curve would not progress, but from all I have read, that is a highly unlikely event in a 13 year old boy. Anyway, it is frustating because it has made us feel insecure with the decision. But doctors aren't perfect and heaven only knows, neither am I. It is also possible that we misunderstood what he was saying. And no, we do not have a surgery date yet but I am thinking it will be in July. I believe they told us we would be notified by mail. Will your daughter be having a posterior fusion as well? Will they be using instrumentation?

[Justin]

I suffer from daily pain primarily muscle spasms called paraspinal spasms.
Bextra, tylenol, advil, etc seems to be ineffective for me in eliminating pain. Bextra seems to be the best at reducing pain but its banned in Canada now and its linked to heart problems. Physiotherapy seems effective if you can afford it and have the time. They put like 2 pads of electric stimulators that relaxes the muscles. Then they put vitamin e on the back. It cost $20 CAD per treatment and its 2-3 times a week. It takes about 30-45minutes.
After the treatment your back sores like hell but the next day you feel pain free. If you continue to do physiotherapy for 2-3 times a week for 1-2 months and do their exercise routine, the treatments will be less painful and better results will occur.

[dawndd]

Justin, thanks for your response. I am sorry you have daily pain and I pray that my son does not when he is older.
Kris, the book sounds interesting. I may want to read it also. We are assuming that he will have the surgery and I hope it will be at Shriners. I just reread my earlier email and I should stress that I feel certain that once we ask the right questions we will understand what Dr. Allen was talking about and that we likely misunderstood him. It's hard to make sure you are understanding everything correctly when so much is coming at you at the same time.