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alli.sunshine
11th October 2008, 10:56 PM
I am so glad to have found this site. I am 41 years old and have Scheuermann's kyphosis. I had Cottrel rods put in in 1989 to correct my curve, which was 108'. I am fused T3-L2. I grew 2 inches during my surgery. I did fine for a while, but now apparently the disease has progressed up my spine, and now I am having terrible problems with my upper back and neck. There is a curve where my back meets my neck that is horrible. My neck juts forward so badly that I cannot lie down flat. My head will not touch the bed. I have to have a pillow under my head. If I stand up against a wall, my head is nowhere near the wall. I have considerable pain most days, but I am used to it, I guess. I developed an ulcer from years of using NSAIDs, so my choice of pain meds is limited. I asked my doctor about surgery to correct the new curve, and he won't do it. He said that the pain may not be improved at all, and he felt that the pain, risk, etc., from the surgery would not equal out the benefit to my quality of life. This is depressing to me, because if I am this bad now, how will I be at age 50 or 60? I am currently looking for a second opinion.

Has anyone else here with Scheuermann's had this happen after your intial curve was corrected? My doctor said it is rare, but in some cases of Scheuermann's, the curve will progress like this. If you have had this happen, what did you do?

Thanks for any insight or advice. I just can't believe that I found a place with other people with kyphosis.

Allison

GillyG
12th October 2008, 12:18 AM
Hi there :welcome2:

I'm so sorry to hear that your curve continued to progress after surgery. I have scoliosis rather than kyphosis, so I can't really be much help I'm afraid, but I have to say it doesn't seem very helpful to be told nothing further can be done and I think you're right to seek a second opinion. At least then, even if another surgeon agrees with the prognosis, you will feel like you have done your best.

Good luck and please stick around - we're quite a friendly (if rather mad :hunny:) bunch and I'm sure someone will be along soon who's a lot more helpful than me :oops:

titch
12th October 2008, 11:26 AM
Unfortunately, with any type of spinal curvature, some people develop further problems with an increase of curvature either above or below the original fusion. People who develop further or additional problems unfortunately often find that their original doctor either can't, or is unwilling to do anything further.

In your particular case, because of the type of problem, it is likely - if a surgical fix makes sense - to require a very specialised surgeon. Many docs simply don't do complex surgeries which involve alteration to pre-existing fusions, so you'll need to find the right one(s) to go to for second opinion(s) on it.

If you give us an idea where you live, we may be able to suggest some starting points with doctors who are known to deal with complex adult problems.

I'm really sorry for what has brought you here, but I'm glad you've found us :) :welcome2:

alli.sunshine
12th October 2008, 01:41 PM
Thank you so much for your quick replies and warm welcome. I am in the USA. I live near Indianapolis, Indiana. My doc now is not the one who did the original surgery. That was done in Louisville, KY. I am considering driving to Chicago or St. Louis, MO. There is a doc in St. Louis (Keith Bridwell) who is very highly spoken of, so I am considering seeing him. Any other recommendations would be greatly appreciated.

Thanks,
Allison

sally333
12th October 2008, 02:39 PM
Mr. Alli
I can not say if surgery would help you or not as of course I am no doctor.
I would like to say that I was in the same shoes as you ae know. I had surgery three years ago for a 110 or higher curve. I was fused from t/2 to L2 at this time. I then last year was rear ended by someone. This caused severve damage at my c5/c6 area and I had this repaired last March. I also received damanage at the t1 area as it slipped onto my t2 disc. This created a 50 degree kyphosis at the base of my neck. This kyphosis at the base of my neck is very painfull and also unsable. I did just have surgery on this a few weeks ago. They extended my rods up to c/4. This straightened my back/neck to a more normal position. Having the rods hold my neck up is going to take the strain off of my spine muscles from working so hard to hold my head up. In my case this is going to help out a lot wih the pain such as my first kyphosis surgery did. I would only asume that it would do the same for you. The only down fall is that I can not longer bend my head or turn it as my neck and back are all connected together. Anyway I am sure you will someday find a doctor to help you as they are out there. The problem is there are very few that do these kinds of surgery. Good luck.

titch
12th October 2008, 06:08 PM
Aha! As soon as I got to you saying St Louis, I was about to suggest Keith Bridwell :) I don't personally have experience of him, as I'm in the UK, but he is very highly recommended by people who have had complex scoliosis revision surgery with him.

While I very much hope you'll make yourself at home here, and stay with us, I'd like to suggest that you also check out the Flatback Revised yahoo group: http://health.groups.yahoo.com/group/Flatback_Revised/messages Your issues are obviously not quite the same as the majority of members there, who have problems stemming mostly from long Harrington rods for scoliosis, however there is a lot of similarity and importantly they are also a very welcoming and supportive group and several members (although I'm not sure how many are active right at the moment, as I have difficulty finding the time to visit the group too often these days) have had surgery with Dr Bridwell. In particular you might want to search for messages from Kam :)

Hope that helps a bit!