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Thread: 13 year old daughter needs surgery

  1. #1
    Join Date
    Sep 2010
    Location
    Tulsa OK
    Posts
    1

    13 year old daughter needs surgery

    I am new to this and do not know how to work it but here goes: My 13 year old daughter needs scoliosis surgery. Her doctor here in Tulsa says he will do it and we have been with him since she was seven (in brace since she was seven years old) but should we go somewhere where they do more of this surgery? He says he does about 6-12 a year. We also have an appt. next week at Baylor in Plano with Dr. Hostin. Does anyone have an experience they would like to share on this? Any advice appreciated. Thanks!

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hello there,

    I am so sorry to hear your daughter needs surgery, especially after so many years of bracing. My daughter was diagnosed at age 6 (now 8) so I have an idea how long of a haul this scoliosis treatment can be.

    I am wondering if you would be willing to consider traveling to St Louis or Houston to Shriners Hospitals? They are absolutely wonderful, w/ cutting edge care that is free and available for any child they feel they can help (which means all with scoliosis). You do not need any sponsor, and the application process is simple.

    My daughter's circumstances were different than your daughter's, and luckily she was able to have a much smaller surgery than fusion, but we traveled from Oregon to St Louis to Dr Luhmann, and it was worth all the effort and travel expense. Just something to consider.

    For my daughter I would certainly want a doctor who does more fusions than 6-12 per year. This is your darling and you want a very experienced surgeon and hospital that routinely works with children. Sorry I don't know your area at all, but you can ask here, and also search the Scoliosis Research Society's physician list at www.srs.org, search for a provider by geographical location.

    Good luck, and please feel free to ask us anything. I know it is very overwhelming to hear your baby needs surgery, even if it has been a long time coming.

    Take care,

    Gayle
    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

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