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maryc
12-08-2004, 12:02 AM
I am a 47 year old who was diagnosed at 15. I believe I had a 30 degree curve then and think that it is much worse now. Doctors have told me that my curve would not get worse. Surgery and bracing were not an option then and I believed for years that the only way I could have surgery was to pay for elective surgery. Here is what I need to know. I have at least one compressed disc due to my scoliosis. Is surgery to address my scoliosis as option to prevent future disc issues? What exactly can surgery do? Can it correct any of the curve or just arrest more curvature? Should I look for a doctor who specializes in scoliosis? What questions do I need to be asking and where should I be looking?

LindaRacine
12-08-2004, 12:43 AM
Hi Mary...

Yes, you should definitely find someone specialized in scoliosis. You can find a list of such specialists here:

http://www.srs.org/directory/directory.asp

Generally, the goal of scoliosis surgery is to stop the progression. Most people get at least a 50% reduction, however if one's curve is very stiff, that might not be possible. Surgery for scoliosis can resolve disc problems within the curve. However, some people with long fusions have degenerative disc problems above and below their fusions. If it happens at all, it's usually 5-10 years after the original fusion. If the surgeon chooses the correct levels to fuse, there may be less of a chance of disc problems in the future.

I actually try to discourage people from going to see a surgeon with a list of someone elses questions. I think you're better off listening to the surgeon, and describing your own history, pain, function etc.

If you really want to learn about scoliosis, I'd encourage you to read any of the following books:

The Scoliosis Sourcebook by Dr. Michael Neuwirth

Stopping Scoliosis by Nancy Schommer

Scoliosis Surgery The Definitive Patient Reference by David Wolpert

Best of luck.

Regards,
Linda

spincon58
12-08-2004, 01:22 AM
Hi Mary,
These are decision that are hard to make. I was just like you..they said it will never progress, well it did..i found my self in pain, unable to walk and all the sports i loved to do vanished from my life. I was always chanting 'my back' my back' cause it always hurts so much. I am now 6 months post op. My curve is reduced and my spine will not shift. It is a very painful surgery and recovery is just as hard. I still have pain issues. I feel like I traded one pain for another , but I can stand longer than before..hay I've been cooking up a strom lately LOL..I'm a great baker now that I can stand in the kitchen...I have been shopping more(my husband is not happy about that) b/c I can walk in the stores. So You have to make that decision whether to have it or not...some days I wish I didn't have it but the next day i'm glad I did..It is an up and down battle and I hope in the future it will only be an up battle...

spincon58
12-08-2004, 01:25 AM
Mary,
I have 3 pages of question, if you would like to see them Email me at lhaber5@comcast.net

maryc
12-08-2004, 07:39 PM
Thanks to both of you. This is a path I never thought I would be able to go down. But the thought of being able to function normally is very encouraging.

Karen Ocker
12-09-2004, 10:16 AM
As for trading one pain for another;this in my case was temporary. Six months post surgery I was still taking neurontin and Tylenol or Aleve. For me it was a year and a half before I went days without taking any meds. If I overdid it I needed something. I was off all narcotic by the time I drove my car 3 months after surgery. Now I am on my feet all day and do not need pain meds after work. I did use a pain management specialist.
Karen

Anterior/posterior revision T-4 to sacrum, 2 stages in Sept/Oct
2002

maryc
12-10-2004, 09:27 AM
I just received the report from my lumbar x-ray and MRI. They called it extreme thoracolumbar scoliosis convex to the left from T10 to L3 with a 43 degree curve. And that's just my lower back!!! The problem is that they don't know why I am in so much pain as they could not find any stenosis or herniation. There is degenerative disc disease L3-5. Any ideas or suggestions? I am waiting for a neurosurgery referral. I told my doctor I want to go to a scoliosis specialist and am willing to consider surgery.

lrmb
12-10-2004, 04:56 PM
Hi there,

My lower curve is only 30, but with degenerative disk at L5-S1: all the surgeons said that my pain was coming from the disk degeneration. On the other hand, all the bodyworkers / most of the rehab/physios I've seen have said that they consider the pain to be scoliosis derived, in so far as my spine rotates and sometimes I twist my pelvis. Disk degeneration causes no pain in some people and a lot of pain in others, so while I'm no expert, I believe that the "truth" is probably somewhere in between - perhaps I feel pain "caused" by the disk more than others because of rotations or postural habits encouraged by the scoliosis.

I guess my question is, didn't anybody attribute your pain to the disk degeneration? Some surgeons deal both with scoliosis surgery and disk surgery, so perhaps you could bring these issues up with whoever you end up seeing.

Take care. Hopefully you will get some answers soon. ~Laura

lrmb
12-10-2004, 04:58 PM
ps Mary, I am also in Pennsylvania, so if you want to correspond, just drop me a line at lrmb24@hotmail.com

Laura

maryc
12-10-2004, 05:49 PM
Thanks, Laura. You're the first person who said the disc degeneration could cause the pain. Thanks for your support!

lrmb
12-11-2004, 09:11 PM
Well, I'm no doctor, but each of the surgeons I saw attributed my pain to degeneration. My MD and physical therapists were surprised that the moderate degeneration could cause such intractable pain, which is what makes me think that rotational/postural issues might also be involved. Also, from what I have read, it seem that people react really differently to disk problems; for example, people with similar MRIs can have huge pain and no pain, and at the moment people can't figure out why... I also have degeneration at some upper levels in the spine, and very rarely have any pain up there...

Good luck in your search!
~Laura

maryc
12-23-2004, 01:09 AM
Went to the neurosurgeon today as my first follow up with the pain and leg numbness and he clearly recommended a scoliosis specialist and the possibility of surgery. Well we are moving forward!! Next question: Anyone know anything about Dr. Richard Balderston from Philadelphia? He is who I was referred to.

Second question: Has anyone experienced kidney problems as a result of the scoliosis? I found out from my CT scan that I have a hydroneprotic kidney with a potential blockage of the urethra as the cause. I am curious if this could be related to my curve or I just have another problem.

blairf83
12-23-2004, 01:59 PM
I don't know your dr... But in case you don't like the guy you're referred to, here's another to consider
Before I found my surgeon, I visited a Dr. at University of Pittsburgh- Dr. Donaldson. He did a friend's surgery and it turned out very well. I only saw him once personally (because he was able to refer me to a good surgeon in Michigan), but he was very friendly, knowledgable. One of those guys you get a really good feeling from.

susannajon
12-24-2004, 10:08 AM
maryc,

Both Dr. Balderston and Donaldson are considered some of the best scoliosis surgeons in the country. They've both been listed in Castle Connelly's "America's Top Doctors" for the last 4 editions. You might want to consider seeing both and see which one you "click" with.

Susanna

maryc
12-24-2004, 01:07 PM
Thank you, Susanna! That may have been one of the best Christmas presents I will get this Season.

susannajon
12-24-2004, 01:32 PM
maryc,

Glad to help! Merry Christmas to you.

Susanna

momoflacrosse
12-24-2004, 10:19 PM
Hi:

I can relate to your story - I am 51 was diagnosed at 14 by the top orthopedist in Canada and had no treatment other than observation. At 40 I started to fall apart. My curves were 37 and 28 in 1995 and now less than 10 yrs later they are 60 and 40. My CT scan shows no stenosis or other major issues except degeneration. I am in pain 24/7 and the 2 surgeons I have seen consider my issues to be nothing more than normal. The last one only was concerned that I have a drug dependency issue. I have one more surgeon to see and at this point am at least hoping to like this one. I do not have my heart set on surgery but would at least like to be taken seriously by the dr's. My thoracic curve has a big twist as well and my rib cage causes me quite significant pain. Lately my hip has been terrible and at 1st my GP thought it was bursitis but my physiotherapist feels it is due to problems in my lower back. As you can tell I am very frustrated by this whole thing but have not given up i will continue to haunt the specialists till I find one that listens and takes me seriously. My next stop is to the pysiatrist who is also an orthopedic specialist but treats on the rehab side of things. I hope he has some ideas. Up until 10 yrs ago I worked full time at a great paying job, downhill skied, did synchronize swimming and led a very active life - now I can't do much of anything , am on disability have been bankrupt and generally lead a life of nothing. I would just like to be able to do some of the things from before and not hurt all the time - sorry for whining but sometimes that helps too lol. I wish you the best of luck in your search for a solution and please feel free to keep in touch if you need someone to listen, n.howe@sympatico.ca
All the best

Nancy