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Thread: Confused!!

  1. #1
    Join Date
    Jan 2008
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    Unhappy 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....

  2. #2
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    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 at 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."

  3. #3
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    Jan 2008
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    Question 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..

  4. #4
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    Quote 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."

  5. #5
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    Northern California
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    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

  6. #6
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
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    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.

  7. #7
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    Apr 2007
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    Sydney
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    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

  8. #8
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    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

  9. #9
    Join Date
    Jan 2008
    Posts
    30

    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.....

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