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Thread: Dr. Hey's comments about bracing in AIS

  1. #1
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    Dr. Hey's comments about bracing in AIS

    http://drlloydhey.blogspot.com/2012/...iety-2012.html

    Several good talks about the benefits vs. risks/costs of scoliosis bracing for adolescent idiopathic scoliosis (AIS), with special note of the lack of really tight, very long-term well controlled studies to confirm efficacy. There is certainly some evidence that it could have some benefit of slowing curve progression and decreasing the rate of surgery at least at point of skeletal maturity. However, other data was presented to show that compliance as well as psychological and emotional effects are possible with bracing that can last well beyond the bracing period. This is all consistent with our family-oriented, personalized, thorough dialogue we have with scoliosis families before prescribing the brace so that the adolescent or younger child as well as the parents are fully informed and are not just rushed off to the brace shop.
    I don't know what he is referring to in the second sentence about "some evidence...". I'd like to know what it is.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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  2. #2
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    Even more interestingly, I canNOT believe the price of tea in China these days!
    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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    Quote Originally Posted by hdugger View Post
    <snip>Dr. Peter Newton from San Diego Children's Hospital talked about genetic testing for scoliosis using the ScoliScore, and how the possible benefit is not worth the $2,900 cost of the test, since it doesn't significantly change the need for careful follow-up. <snip>
    As a formerly braced adolescent, and now the parent of two young children with juvenile scoliosis, I would pay $2900 out of my pocket in a hot second to see if they had a low-enough score to save them from years of possibly unnecessary bracing. Of course they would still need careful follow-up (as they are currently receiving), but a chance to save kids with low scores from bracing, that's priceless!
    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

  4. #4
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    Quote Originally Posted by leahdragonfly View Post
    As a formerly braced adolescent, and now the parent of two young children with juvenile scoliosis, I would pay $2900 out of my pocket in a hot second to see if they had a low-enough score to save them from years of possibly unnecessary bracing. Of course they would still need careful follow-up (as they are currently receiving), but a chance to save kids with low scores from bracing, that's priceless!
    Gayle I agree with you 1,000%. We have video testimonials of folks like Lonner taking kids out of brace largely, if not completely, on the basis of their Scoliscore. I don't understand how anyone can maintain it is not changing things for the better for kids.
    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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    I attended a different track than Dr Hey, so can't comment on that specific statement. However, the program includes Dr Newton's slides. One of those slides is titled "Has it proven effective in predicting the progression of scoliosis? Sort of... But only for those who won't progress... Which is most.". So, from a clinician's point of view, it hasn't changed the treatment for most of their patients. But, if you're a parent or a child who is trying to decide whether to start bracing treatment, and you get a score that is either low or high, the result is can be very significant. And, if you get a very low score, you can relatively safely forego at least some of the usually recommended X-rays.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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  6. #6
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    Quote Originally Posted by Pooka1 View Post
    http://drlloydhey.blogspot.com/2012/...iety-2012.html



    I don't know what he is referring to in the second sentence about "some evidence...". I'd like to know what it is.
    I talked to Dr Hey last night. He was unaware that most families have to pay little or nothing for a ScoliScore test. He didn't indicate whether that fact would change his thinking on the subject. Maybe he'll comment on it in his BLOG.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
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    Quote Originally Posted by hdugger View Post
    My issue with the test is that it only tracks to a single endpoint - 40 degrees by maturity.

    I think the thing people tend to forget is the ScoliScore is not some new magic bullet, that crystal ball we all want with all the answers. It is simply another tool in the arsenal for thorough scoliosis care. Obviously the ScoliScore will not be helpful for all kids with scoliosis, but for some, it can be very helpful. Parents and surgeons need to discuss if it could provide helpful information for each individual child. I see nothing to criticize about a test like that, it needs to be used appropriately and thoughtfully, the same as all diagnostic tests. At least it is a start, and I am sure we will see it refined as time goes on.

    You mention you don't like the test because even with a low score a child with a small curve could end up with a 40 degree curve. Again, I think you must keep in mind that if the child were to start progressing above 30 degrees, even with a low scoliscore, the subject of bracing will be more seriously visited by most surgeons. The child with a small curve and a low score is still monitored--they aren't just discharged from the orthopedist's care once a low score comes back. And on the flip side, the children who come back with extremely high scores can be treated more aggressively, and we have seen that work well on the VBS forum. Food for thought...
    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

  8. #8
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    Quote Originally Posted by leahdragonfly View Post
    I think the thing people tend to forget is the ScoliScore is not some new magic bullet, that crystal ball we all want with all the answers. It is simply another tool in the arsenal for thorough scoliosis care. Obviously the ScoliScore will not be helpful for all kids with scoliosis, but for some, it can be very helpful. Parents and surgeons need to discuss if it could provide helpful information for each individual child. I see nothing to criticize about a test like that, it needs to be used appropriately and thoughtfully, the same as all diagnostic tests. At least it is a start, and I am sure we will see it refined as time goes on.
    I agree, Gayle. The ScoliScore may not be helpful to all patients, but it is harmful to none. As hdugger stated, maybe it puts certain kids on a less frequent x-ray schedule, etc. It is, as you say, simply another tool in the arsenal to treat scoliosis and the more tools, the better.
    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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