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Thread: Desperately Seeking Answers

  1. #1
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7

    Unhappy Desperately Seeking Answers

    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?

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,935
    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

  3. #3
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    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...
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  4. #4
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Mary,
    I have 3 pages of question, if you would like to see them Email me at lhaber5@comcast.net
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  5. #5
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7

    Smile

    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.

  6. #6
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Trading one pain for another after surgery ?

    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

  7. #7
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7

    Update

    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.

  8. #8
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    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

  9. #9
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    ps Mary, I am also in Pennsylvania, so if you want to correspond, just drop me a line at lrmb24@hotmail.com

    Laura

  10. #10
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7
    Thanks, Laura. You're the first person who said the disc degeneration could cause the pain. Thanks for your support!

  11. #11
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    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

  12. #12
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7

    latest update!!

    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.

  13. #13
    Join Date
    Oct 2004
    Posts
    166
    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.
    Blair

    Dec 15th, 2003 @ age of 20
    Posterior Fusion and CD Horizon instrumentation T2-L1.
    Surgery by Dr. Herkowitz- Beaumont Hospital of Royal Oak, Michigan
    Excellent correction of 52 degree single left thoracolumbar curve. Slight curve remains in unfused lumbar region but seems stable.
    February 5, 2005- Failed Scar Revision Surgery
    September 17, 2005- 2nd Failed Scar Revision.

  14. #14
    Join Date
    Sep 2004
    Location
    Baltimore, MD
    Posts
    401
    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

  15. #15
    Join Date
    Dec 2004
    Location
    Paradise, Pennsylvania
    Posts
    7

    Smile Merry Christmas!

    Thank you, Susanna! That may have been one of the best Christmas presents I will get this Season.

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