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  • #1

    Confused!!

    We just got back from a visit with our scoli doc and at our last visit 3 months ago, her curve was 49, today it is 59. She has been braced for over 2 years and the curve is still progressing, I just feel like this is a fruitless "therapy" if ultimately she is going to have surgery anyway. Why put her through the emotional turmoil of wearing a brace all of the time? She is suffering emotionally because she feels so different. I really don't know what to think anymore. She has pain and today he did a bend xray and that is showing that she is getting rigid. Her curve on that test was about 23, so if we keep letting the curve progress and with her becoming rigid, then the correction after surgery will still be high. Am I just being too emotional or does anyone agree with me. I don't know if bracing her for the last 2 years has made a difference. What if I don't brace her and just let her be an 8 year old little girl? Ugghhh, I am so confused If anyone would like to share their thoughts, I would appreciate it..Thank you....
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  • #2
    ETA: I see you have already investigated growing rods and VEPTR. Should have checked the archives first. Anyway, no problem venting here. Carry on.

    ----------

    I agree with you!

    You have a right to be emotional about what is happening. You and your daughter had some bad luck despite your best efforts.

    JIS is a very tough situation as far as I can tell. If you were under the care of an experienced pediatric orthopedic surgeon that you trusted, you automatically made the right care decision in my opinion whatever that decision was. That's the way it works, okay?

    Maybe the brace at least slowed the progression? That would mean it wasn't entirely fruitless, yes?

    Maybe now is time to investigate some non-fusion surgeries? There are experts in this at various places, notably the Philadelphia Shriners. Would you consider getting a consult from them?

    You are entitled to your frustration. Deep breaths. Then press ahead.

    Good luck.
    Last edited by Pooka1; 09-16-2009, 04:15 PM.
    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."

    Comment

    • #3
      Confused

      Pooka,
      When you mention "non fusion surgeries", are you talking about growth rods? Please explain as I am not sure what that means. Thank you..

      Comment

      • #4
        Originally posted by Scolimomof1 View Post
        Pooka,
        When you mention "non fusion surgeries", are you talking about growth rods? Please explain as I am not sure what that means. Thank you..
        Yes that's what I mean... growth rods, VEPTR, VBS, tethering, etc.. Some of these are now only done on relatively small curves, though.
        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."

        Comment

        • #5
          Scolimom...

          I'm really sorry you're having to go through this. It's a really tough situation. Usually when I talk to parents of kids in braces, who are having trouble like you are, I tell that while I'm not a medical professional, I would not endanger my relationship with my kid over a brace that might or might not be effective. With that said, however, your daughter's curve is so aggressive, that you have to worry about how large it will get before her spine can be fused.

          I definitely think you should consider growing rods. They're far from perfect, but they're still an option.

          Regards,
          Linda
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment

          • #6
            Hi Scolimomof1,

            If I were you, I'd get a consult at the Shriners in Philly, like Sharon said. They have the most innovative ideas and treatments. Did your current orthopedic surgeon offer any treatment options besides the brace?
            Laurie

            Mother of Alexander & Zachary:
            Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
            Zach is 13 years old and very energetic.

            Comment

            • #7
              What a tough situation Scolimomof1.

              If I were in your position I would try and get a surgery date as soon as possible so your daughter can be out of that brace! But I would keep her in it untill surgery, as it may be stopping the curve progressing more rapidly.

              I have so much trouble facing this at 28, but an 8 year old! She will be one tough cookie when she is older
              45L/40T
              Surgery 25/1/2010
              Australia

              Knowthyself

              Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

              Comment

              • #8
                I agree with Jimbo. Children as they say are resilient. I can't remember how many times i have read about children recovering so quickly that they are back to school in no time. Goodluck with your decision making.
                Vali
                44 years young! now 45
                Surgery - June 1st, 2009
                Dr David Hall - Adelaide Spine Clinic
                St. Andrews Hospital, Adelaide, South Australia
                Pre-op curve - 58 degree lumbar
                Post -op - 5 degrees
                T11 - S1 Posterior
                L4/5 - L5/S1 Anterior Fusion

                Comment

                • #9
                  Confused

                  laurieg6,
                  Yes, my doc has suggested growth rods...in the past, yet on another visit he said that he would not suggest growth rods. So, I am confused on what to do at this point. I feel that perhaps growth rods would be the choice at this point because what are we waiting for, are we waiting until she becomes "rigid" and then do the surgery and then we wouldn't get the most correction. I don't know, what I do know is that I am ready for another opinion, perhaps someplace out of Florida.....

                  Comment

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