View Full Version : New and looking for info

01-16-2008, 12:10 PM
I've just discovered this forum and I'm so excited with what I've seen so far! Now I'd love some input from anyone willing to share. I'm 45 yo, was diagnosed with mild scoliosis at 13, did the chiropractic thing for about 10 years and have basically tried to ignore the curves. After having progressively worse pain for the last 10 years I finally saw a spine specialist is OKC last August. I have a left thoracic 49* curve from T5-T11 and a right thorocolumbar 60* curve from T11-L4 and DDD in my neck. He said surgery is in my future it's just up to me to decice when. I've since been seeing a pain mgnt. doctor and had 3 epidurals but haven't had much luck reducing the pain. I've also been told by both the spine dr. and the pain mgnt. dr. that surgery won't necessarily help the pain and since that's the main reason I'm considering surgery, I'm a little disheartened and just don't know what to think. :confused: I welcome any comments anyone would like to share.

Karen Ocker
01-16-2008, 12:22 PM
I've also been told by both the spine Dr. and the pain mgnt. dr. that surgery won't necessarily help the pain and since that's the main reason I'm considering surgery, I'm a little disheartened and just don't know what to think. I welcome any comments anyone would like to share Becky

If your curve is in the 60s--it will progress forever--1-3 deg a year. Do the math and by 55 you could have a 70-80 deg. The indications for surgery are progression and/or pain. Progression in my case was insidious--with an old uninstrumented fusion from 1956. They said it would never happen.

As for pain--I seldom have pain. Usually muscular stuff from a new activity or overdoing.

Please see a scoliosis specialist (not just spine doc) who has extensive experience with adult scoliosis. Search this forum for good people in your area.

01-16-2008, 12:52 PM
Thank you so much for the reply. Dr. L'Heureux is a scoliosis specialist with many adult scoliosis patients. Everything I've learned about him is very positive and points toward him being one of the best scoliosis surgeons in the area and I really like him. However, I'm wondering it would be prudent for me to get a second opinion. I realize with the degree of my curvatures and the rate of progression I've shown surgery is the way to go. I just can't figure out when I'll be able to make it happen.

01-16-2008, 02:05 PM
Becky-- I'm so glad you found the forum! I didn't until AFTER my surgery, but just love it. It is a place where you can find encouragement, acceptance, understanding, and lots of support. :)

For more information on scoliosis surgery, there are two books I'll recommend. The first is written by a man who had scoliosis surgery and leads you through a ton of information and the whole surgery adventure and recovery from a patient's perspective. The second is by a scoli doctor, so is with a professional slant but not first-hand knowledge of being in the patient's shoes. They are Scoliosis Surgery: The Definitive Patient's Reference by David K. Wolpert and The Scoliosis Sourcebook by Michael Neuwirth and Kevin Osborn. I read them prior to my surgery-- and the Wolpert one several times... They are both very helpful for understanding our condition and what the surgery and recovery is all about.

As far as pain goes--neither of those books nor any doctor will promise that you won't still have pain after surgery. Many people attest they no longer have pain, but you'll find others that do. The surgery will keep your scoli from progressing--so even if your pain doesn't vanish altogether, it won't be as much as it could have been. Tons of people without scoli suffer from back pain. In my own case, I don't consider myself fully recovered from the surgery yet (8 months post-op), and although I still can get achy if I overdo or am up too long, etc., it is a different kind of ache and easier to take. I still think it will continue to get less and less as more time goes by.

Best wishes seeing the specialst(s) and figuring out your course of action. Surgery is a big thing, but is do-able and then we keep getting better and better with time. Without it, that wouldn't be the case.

01-16-2008, 03:19 PM
Hi Becky,

Hereís a non-scientific quiz on Linda Racineís website who is our moderator that may be of some help in your decision-making process.

Karen is right. Severe curves only worsen. Iím facing first-time surgery this year when I will be 59. The deciding factor for me was when I saw an x-ray of my spine taken in October and my curve was measured at 80ļ which was a seven degree increase over an x-ray taken just one year earlier, so Iím on a fast track of progression. I never had x-rays taken over the years because quite frankly I never experienced problems until recent years and I did not even know adults were being treated for this disease. In my 20s I was told nothing could be done. While Iím not in disabling pain, I am noticing more and more limitations. I have no social life because by the time my work day ends, my back has had it, and all I want to do is go home and lay on a heating pad. The past two summers Iíve had to decline invitations from my sister and brother-in-law to join them on their foreign adventures. These days I can barely schlep around a handbag. My spine is making me older than what I am and I want to get it fixed. One thing to keep in mind too is that as you get older and your curves worsen, surgeon selection becomes limited. Not all surgeons want to treat older adults with severe curves. Then it may require traveling out of state for surgery.

Good luck to you. Youíve come to the right place.


01-16-2008, 08:06 PM
My pain was sure helped by the surgery- I still have some pain, but it is different and more manageable than the scoliosis pain. Keep doing your research and maintain an open mind.....Welcome to the forum, you've god a lot of company here to help...

01-17-2008, 09:31 AM
Welcome Becky,

This forum really helped me in my decision to go through with surgery and through post-op. I agree with everything everyone has already said. I had a 55 degree curve and my reasons for doing surgery were twofold: it was only going to get worse and I was in a lot of pain. I am just over 7 months post-op now and can say that I'm glad I did it. No one on this site will sugar coat the surgery and the difficulties of it. However, I did a lot of research, got a lot of support, prepared mentally and physically and know that I made the right decision. I still have pain, but it is different recovery pain. The doctor never promised that I would be pain free, but I do notice that I can do things now that I couldn't do before the surgery and I'm only 7 months post-op.

Best of luck,

01-17-2008, 11:19 AM
I have to say I'm really glad no one will sugar coat anything pertaining to the surgery and recovery. Doctors can give the science and can even tell me what other patients have told him, but the first-hand knowledge of someone that has been through it is invaluable. No one can know what scoliosis is like unless you have it. I looked at the quiz and the score came out 19-4 in favor of surgery. I've just gotten so much reluctance from so many places. My surgeon's PA basically said it's up to me to decide when to do the surgery. She said waiting a few years won't make that much of a difference in the amount of correction or in the difficulty of recovery. My pain mgnt. doctor seems to really be discouraging surgery. I don't think my family is overly enthusiastic about the surgery process. AAAHHHHH! I'm really frustrated. I'm tired of being tired from dealing with the pain. But with a full time job and 3 very busy kids and all the activities that go along with them, I can't imagine when I can carve out a year.

01-17-2008, 12:27 PM
As others will tell you, and probably already have, everyone's experience is so different. When you say you need to "carve out a year" keep in mind it may not be that long. I'm just past 6 weeks post op and I'm easing my way back into my life - starting to go back to work, and do normal every day things. I'm starting to have stretches where I forget what I've gone through. The type of pain pre-op is gone.. what I feel now is more of a muscle soreness that I think is from the muscles holding my spine in a different position.

I don't want to say that it's easy (because it's not), but it's doable, as Susie says. No one can tell you what your experience will be like since we're all so different, but hopefully seeing the range of reasons for surgery and recoveries among people here, you'll get an idea of what to expect. That was invaluable to me.

Best of luck.