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Thread: not sure I agree with the doctors call

  1. #1
    Join Date
    Mar 2012
    Location
    Carson City, NV
    Posts
    30

    not sure I agree with the doctors call

    we saw the doctor yesterday and he said he dosen't feel a sence of urgency to do the surgery...I don't think I agree, I think she needs it, she is in pain every singly day I think even she was dissapointed. He said t was ultimately up to her.Should I push the issue?

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Ann,

    I am so sorry to hear that things are up in the air now. I can imagine how very frustrating that is, especially since your daughter has pain. I do know that many surgeons would take a wait and see approach to a 47-degree curve, especially since she is probably past her peak growth, and maybe the curve will not get worse. When did the doc ask her to come back for follow-up?

    What did the doctor say about her pain? Did he have any suggestions? How about trying a course of physical therapy and advil (if your daughter can take that). Also, at home, laying on a heating pad at night may soothe things. Would she consider going back to swimming?

    I also wanted to lend my complete support to your unfortunate situation with your parents. I can totally relate, because my mother is basically like that, too. She is very mental about my own severe back problems, and seems to take it personally when things have gone wrong with my back. But she was far more mental and extremely unsupportive when my 6 y/o was diagnosed with scoliosis. She was extremely unsupportive, and took my being upset about having to brace Leah as blame on her for making me wear a brace as a teen. What the what??? When I informed her that we were taking Leah to Shriner's for a consult for VBS surgery, she was furious, and told me, "I am so upset that I can't discuss this." I was so pissed, because she did not support us at all in our decision. Best advice I can give is, avoid discussing this with unsupportive people, including your parents. If they don't approve, then don't talk about it with them. Find someone else to talk about it with--we will all listen here.

    Best of luck with everything. Maybe it would be good to just wait several months then return to Shriner's and revisit your daughter's situation?
    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
    Jan 2008
    Location
    NC
    Posts
    8,903
    Is there demonstrated progression? I am not surprised your surgeon doesn't want to operate south of 50* without demonstrated progression and without exhausting conservative pain treatments. We have a few folks here who got to ~50* and never progressed though they had pain.

    Could get a second opinion.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    The other thing that might be going on here is that the fusion length won't change whether you do it right away versus waiting. You may want to ask the surgeon if waiting will affect the length of fusion or the distal end of the fusion.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Apr 2012
    Posts
    155
    What's her degree? And where is it located (is it a lumbar or thoracic scoliosis aka on the bottom or top of her spine) her posture cloud be her problem and how old is she all of these small factors are important to know what to also is her spine twisted(does one shoulder stick out or does one side of the rib cage stick out more?)
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

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