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Thread: I think I need revision surgery

  1. #1
    Join Date
    May 2011
    Location
    Abingdon, Oxfordshire. England
    Posts
    15

    I think I need revision surgery

    IMG_0521.jpg

    Hi

    I had spinal fusion in 2001 from L12 to T2 and I think I need another operation. I have developed a second curve in my upper spine that is causing me a lot of pain. See link for image of new curve:

    http://www.facebook.com/media/set/?s...6243.658861845

    My surgeon is not keen to correct it but hasnt given me any reason why. My doctor and my physio both think I need the surgery and have written to the surgeon to ask him to reconsider but he has not responded.

    Im really frightened that my back will degrade more and more and that I will loose the quality of life I gain after the first surgery.

    Has anyone else found themselves in the same situation?

    Is there anything I can do?

    Best wishes

    Kate

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi curvykatie,

    Sorry to hear you're having more troubles and that your surgeon is uninterested. I looked at your x-rays and it looks like your fusion is 3 levels, T12-L3, it appears to have been anterior. You don't mention how much the upper curve has progressed, but it appears fairly significant.

    You really don't want to have surgery done by a doctor who says he doesn't want to do it, whatever his reasons are. Maybe he feels it is beyond his capabilities but he will never tell you that of course. Is it possible to find another surgeon (even if you have to travel) for another opinion?

    Best of luck,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by curvykatie View Post
    IMG_0521.jpg

    Hi

    I had spinal fusion in 2001 from L12 to T2 and I think I need another operation. I have developed a second curve in my upper spine that is causing me a lot of pain. See link for image of new curve:

    http://www.facebook.com/media/set/?s...6243.658861845

    My surgeon is not keen to correct it but hasnt given me any reason why. My doctor and my physio both think I need the surgery and have written to the surgeon to ask him to reconsider but he has not responded.

    Im really frightened that my back will degrade more and more and that I will loose the quality of life I gain after the first surgery.

    Has anyone else found themselves in the same situation?

    Is there anything I can do?

    Best wishes

    Kate
    Hi Kate...

    You actually have curves both above and below your fusion, and I think your fusion is T11-L2. (There are 4 levels fused. It's possible that you have an extra lumbar vertebra, which could mean you're fused T12-L3.) Unfortunately, I suspect that if they fuse only the upper curve, your right shoulder, which is already high, will probably go even higher. It's hard to see much in terms of your lumbar spine, but I'm guessing that if your lower curve is fused, they'd have to go at least to L4. So, you'd probably have a fusion of something like T4-L4, with a good possibility of needing additional fusion when you hit your 50s or 60s.

    I'm not an MD, so it's just my guess of why the surgeon might not want to do the surgery.

    Can you describe your pain?

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #4
    Join Date
    May 2011
    Location
    Abingdon, Oxfordshire. England
    Posts
    15
    Thanks for replying to me.

    Im not sure how much the upper curve has progressed exactly as the surgeon didnt give me any information. This is the first time i have been x-rayed since about 1 year after the operation in 2001 so it was a bit of a shock to see another curve had developed although I knew something wasnt right from the pain I have been having.

    I have thought that perhaps i should seek a second opinion but I am afraid first of all of upsetting my surgeon and perhaps they talk to each other about their patients and second, I am lucky enough to live not far from an orthopedic hospital where I had the operation so should I ask for a second opinion elsewhere because of the first worry I had?

  5. #5
    Join Date
    May 2011
    Location
    Abingdon, Oxfordshire. England
    Posts
    15
    Hi Linda

    Thank you for replying to me.

    The pain I have is mainly around the right side of my upper spine and scapular and in my sternum. Its a kind of dull ache together with a burning feeling and an intermittent sharp stabbing pain. I struggle to do any task where I am using my right arm a lot ie: drying my hair, using a computer mouse, doing the vacuuming etc. Im a graphic designer and photographer so its very difficult to avoid using my arm too much. Sometimes just get so tired from doing normal everyday this its very frustrating. Im getting married in december and would like to start a family soon after but I am so worried about the condition and future of my spine and how it will hold out for both pregnancy and being a busy mum!

    I feel I should do something about it but my surgeon isnt giving me a lot of information! Not sure of how hard I should push - im not a surgeon so should i just be accepting his advice?

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi...

    I don't know how British surgeons are, but I think that good U.S. surgeons usually encourage a second opinion. In the spine center where I'm employed, we occasionally have patients see two different doctors within the same practice for second opinions, but I think many go elsewhere. I definitely think a second opinion is a really good idea for you. Hopefully, one of the Brits who participate will offer some recommendations for someone great. I also think it might be helpful to find a really good physical therapist. Again, I don't know how these things are in the UK, but here in the US, there's a vast difference between most physical therapists and really good physical therapists. A really good therapist will spend a lot of time doing things like measuring range of motion. If a therapist wants to start exercises without a very thorough evaluation, you don't stand a very good chance of getting any benefit from it.

    Regards,
    Linda

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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