progression in adulthood -- surgery?

[sweetness514]

To Maura:

Good luck to you and with your decision. I was also 26 when I had my surgery, after being in some amount of pain for less than a year and finding out that I had a 60 degree curve(wore the Boston brace as a teen and left the hospital at 18 refusing surgery, wich was the best decision I made at the time since I was mostly pain free for those years, until I was 26). I did get additional surgeries- but those are some of the risks- and sometimes wonder if I would have waited a bit longer and tried other things, but in the end I was right to have it, since the curve was big, and I didn't have to get anterior as well- just posterior with hip graft. I took a leap of faith, didn't have much of a choice.

To green m&m:

I'm so sorry, and wish you health in the future. You know you can share your thoughts and worries here and can PM me anytime you want. Hang in there.

[sweetness514]

I'm curious.........and maybe Linda (or anyone else please feel free) can answer this............ At 12 years old I had back pain all the time. My parents are deceased so I don't know what my inital curve was, but I'm pretty sure it wasn't a very high number when I was initally diagnosed, although I could be wrong. So, my question is... what would have caused the pain all the time at such a young age? I understand why at the time of my surgery as I was 27 years old (62/32 degrees), but as a young child? From what I have been reading, most children and some of the adults do not experience pain. My daughter never, ever had any back pain even when her curve was up to 28 degrees. Just curious...............Thanks! Lynn

I agree with Deb(Cakedec) about the growing pains. When I first started to have pain from my scoliosis, I was about 12, and my mom asked our family doc what could be the problem, and so he examined me and noticed the scoliosis. We then went to an ortho and he told me I had double curves, early thirties in the thoracic and late twenties in the lumbar. I started wearing a Boston brace for the next 4 years(23 hours for the first few years and then on and off until I was 17 or 18), and the pain was contant and really bad, I had so much trouble concentrating in school. Did PT and went to the chiro, nothing helped and by the time I was 18, the upper curve had grown and gotten to about late 40's, early 50 degree. So all the growing hurt. Then from 18 to 26-the year I had surgery- I barely had pain unless I was sitting down at a desk, wich wasn't an issue for me since I always worked standing as I'm a cosmetician and make up artist. In those eight years, the curve grew about one degree a year, so that was probabbly one of the reasons I didn't have much pain, although it is different for everybody and I know some people who's curve don't grow and they still get pain from their smaller curves.

[sweetness514]

"As for disc degeneration above and below fusion sites that is not necessarly a given, from what I found out. I went to and talked to many Dr.s and physical therapists reguarding this as it was a major concern for me. They said it's all in how you take care to move correctly and relearn to do things to protect the discs in those areas."

I didn't have time to read this whole thread and now that I did, I wanted to say a few things about this issue. It is encouraging to hear, and I hope it is true. In most cases, I'm prone to think that taking care of those unfused areas should help them not degenerate or even hurt. In my case, I haven't had luck with my vertebreas above my fusion, C1 to T4. Ever since I had surgery I get extreme stiffness, have developped a few pinched nerves and have done just about everything to get pain relief(PT, massages, acupuncture). All the orthos I've seen for it told me that it was caused by the fusion, and one osteopath(sp? not sure about the name) specialist didn't even want to touch me(let alone take my money for treatments), and told me the same thing about being fused not being natural. But natural or not, with our scoliosis and pain it's not like we had that much of a choice to get surgery or not.

[LindaRacine]

Hi...

As far as I know, there hasn't been any long-term outcome study that specifically addresses the issue of disc degeneration. However, since the vast majority of people who have scoliosis surgery never need additional treatment, I think it's safe to say that while the discs above and below the fusion are at additional risk, there's no guarantee that anything will happen one way or the other.

I've tried to be good about taking care of my spine since surgery. I did ab exercises almost every day for years. I gave up rollercoasters and white water rafting (two of my favorite activities). If I have to carry something heavy, I do so with my abs tightened. Well, you get the picture. And, unfortunately, the first disc below my fusion is almost completely degenerated. I don't know whether it would be worse if I hadn't tried to take care of my back. So, I guess my point is that we each have to make our own (hopefully informed) decisions based on the research and what our surgeons tell us, and then live with the consequences.

Regards,
Linda