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Thread: Dr. Hey makes a plea for being honest with kids about bracing

  1. #1
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    Dr. Hey makes a plea for being honest with kids about bracing

    http://drlloydhey.blogspot.com/2013/...nions-for.html

    emphasis added...

    Wednesday, July 3, 2013

    quick update.... second opinions for scoliosis bracing.
    It's been quite a while since I've taken a breather to sit down and write a blog post, but things have been going well with plenty of interesting families passing through our doors at Hey Clinic, and over at Duke Raleigh Hospital and WakeMed Children's Hospital.

    The past several weeks, we've been focusing mostly on adolescent and early onset scoliosis surgeries with kids being out for summer. We've also done scoliosis surgery on a 24 yo woman school teacher who is also out for the summer, who had a painful collapsing kyphoscoliosis. Recently it seems I've seen quite a few younger guests and their parents doing second opinions for scoliosis bracing, as well as some for surgery as well, including a few for potential revision scoliosis surgery. As we've shared in the past, I think it is important to make sure your adolescent is not only included in the scoliosis brace decision, but actually is fully aware of the long-term, daily 18 hour a day minimum requirement, that could last for several years. At the end of the day, the adolescent also has to realize that the brace is not a guarantee that the curve will not progress, and it will not improve with the brace. Surgery may still be necessary down the line. Taking time to go over the choice is a good idea!

    More later,
    Dr. Lloyd Hey
    Hey Clinic for Scoliosis and Spine Surgery
    http://www.heyclinic.com
    That type of honesty will reduce brace wear even further, maybe below the point that it can be studied.
    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."

  2. #2
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    Yup. Agree. Exactly why my DD14 who is 100% compliant thinks the brace is a nuisance and surgery inevitable. She saw her spine curve another 11 degrees braced.

  3. #3
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    Quote Originally Posted by cello_mom View Post
    Yup. Agree. Exactly why my DD14 who is 100% compliant thinks the brace is a nuisance and surgery inevitable. She saw her spine curve another 11 degrees braced.
    My kid was 100% compliant (with a night-time brace so not in the same league as the 23 hour per day brace) but her curve moved plenty in brace. It was also stable out of brace at times. The curve moved when it wanted to move irrespective of brace wear.
    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
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    Quote Originally Posted by cello_mom View Post
    Yup. Agree. Exactly why my DD14 who is 100% compliant thinks the brace is a nuisance and surgery inevitable. She saw her spine curve another 11 degrees braced.
    Same here. 110% compliant. 24/7 wearer. Curve progressed from 29 to 41, 12 degrees in 12 months.

  5. #5
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    Quote Originally Posted by cello_mom View Post
    Same here. 110% compliant. 24/7 wearer. Curve progressed from 29 to 41, 12 degrees in 12 months.
    Your daughter tried. She should always be proud of that. I certainly would never advocate NOT getting a brace for a child who wants to try.
    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."

  6. #6
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    Braced for 8 years

    My son was braced for 8 years in a Boston brace, from 8 years to 16 years old. His curve progressed altogether from about 27 deg to 41 deg, and he did not need surgery. He was fairly compliant with wearing it, at least 18 hours/day. It did seem like the time when he needed a new brace was the time that he was without a brace that fit, which is probably also the time that the brace is supposed to be needed the most. Once, by the time we measured and received the brace 4 weeks later, he already outgrew it. What a trooper he was - no complaints during all those years! I do wonder sometimes if he did not wear a brace, if he still would not need surgery? One doctor told us that there is a blood test that is being worked on that will basically be able to tell if a person is susceptible to the curve getting worse or not - bracing or no bracing.
    Last edited by JeanZ; 04-08-2014 at 03:01 PM.

  7. #7
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    Quote Originally Posted by JeanZ View Post
    My son was braced for 8 years in a Boston brace, from 8 years to 16 years old. His curve progressed altogether from about 27 deg to 41 deg, and he did not need surgery. He was fairly compliant with wearing it, at least 18 hours/day. It did seem like the time when he needed a new brace was the time that he was without a brace that fit, which is probably also the time that the brace is supposed to be needed the most. Once, by the time we measured and received the brace 4 weeks later, he already outgrew it. What a trooper he was - no complaints during all those years! I do wonder sometimes if he did not wear a brace, if he still would not need surgery? One doctor told us that there is a blood test that is being worked on that will basically be able to tell if a person is susceptible to the curve getting worse or not - bracing or no bracing.
    Hi Jean...

    The test to which you're referring is probably ScoliScore. You can read about it HERE. Unfortunately, it applies to only a small percentage of patients (Caucasian males and females with curves between 10-25 degrees and ages 9-13.) For those who fall in the zone, and who score either high or low, it can be an incredibly useful tool in terms of potentially eliminating the need for bracing.

    I hope your son's curve continues to be stable.

    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
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  8. #8
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    Quote Originally Posted by JeanZ View Post
    I do wonder sometimes if he did not wear a brace, if he still would not need surgery? One doctor told us that there is a blood test that is being worked on that will basically be able to tell if a person is susceptible to the curve getting worse or not - bracing or no bracing.
    Hi Jean,

    First, congrats to you and your son on a job well done. Eight years is a long haul.

    I'm sure you are not the only one who has wondered whether or not surgery would have been avoided even without the brace - or if the brace made a difference - and it's a very valid question to ponder. On the one hand, bracing can be very tough for kids/teenagers; on the other hand, as a parent, it's tough to roll the dice and take that chance and forego bracing.

    Again, congrats on a job well done.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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