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Thread: The ethics of bracing (and PT) with a Scoliscore <41

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    The ethics of bracing (and PT) with a Scoliscore <41

    Given how Dr. Lonner immediately took that girl out of her brace once the Scoliscore came back at <41, I am guessing that surgeons might think it is unethical to brace these children.

    I wonder if that is actually the standard of care now or is quickly heading towards becoming the standard of care. Linda, have you heard any noises about the ethics of bracing a child with a Scoliscore of <41? It may be viewed as outright unethical by surgeons. I could easily see that given the difficulty of brace treatment and the questionable efficacy to date.

    The reason I was thinking about this is Dr. McIntire suggested that avoiding surgery was not the only goal with conservative treatments which was complete news to me! Maybe he was only referring to PT and not to bracing. PT might still be ethical for these kids but it should be made absolutely clear that the risk of not doing it in terms of reaching surgical range is zero for most kids with small curves.

    Assuming the above is true, I don't see how a study population could ever be assembled for bracing or PT among kids with a Scoliscore <41. I am guessing it is a game changer for conservative treatments wherein their potential study population has decreased a lot and they can only work with ~25% of kids with smaller curves.

    I predict going forward that it will become increasingly harder and harder to publish a study on surgery avoidance without first showing that the subjects had a Scoliscore of >41. And when the measurement precision is considered in light of the relevant Cobb angle range in subjects with a Scoliscore <41, I don't think those studies will ever be conducted/published due to noise.

    Scoliscore seems like it might be a real game changer if it stands.
    Last edited by Pooka1; 01-04-2011 at 06:03 AM.
    Sharon, mother of identical twin girls with scoliosis

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    what is the "formula" for being pretty sure one's child won't progress?
    is it curves under 30 degrees at skeletal maturity?

    and since there are always...always...those people who don't follow "the book"...or what the statistics say will probably happen...what does a parent trust?

    it is so hard to look backward, as hindsight is 20/20...to say "we shoulda," or we "coulda"....

    i don't know that i think bracing does anything but delay...but i don't blame a single parent for wanting some "insurance"...i know you don't either...
    as a special ed teacher, years ago i went to Newington Childrens' Hospital in CT to look into what was done for kids with scoli...this was back in the 1970's...the guy there told me that if my curve had been found when i was younger, they would have recommended bracing me as a kid (that would have been Newington Childrens recommendation, anyway)
    course, i'm pretty darn sure i woudn't have worn a brace, knowing how i was back then...but that's just me...

    so i wonder how much has changed since back then...


    jess
    Last edited by jrnyc; 01-04-2011 at 06:42 AM.

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    Quote Originally Posted by jrnyc View Post
    what is the "formula" for being pretty sure one's child won't progress?
    is it curves under 30 degrees at skeletal maturity?
    A Scoliscore of <41 was associated with a zero risk of progressing to surgery range. So it isn't even "pretty sure," it is "will not reach surgery range" if the score is <41. Those are the results to date and we will have to see if they hold.

    Beyond that, 30* at maturity seems to be viewed as protective against progression to surgery range in one's lieftime but there is stilll some small risk per what I understand. Moreoever there are people on this forum who progressed to surgery range starting from low 30*s at maturity. At least one surgeon called this event not unusual or not unheard of or something alnog those lines. That person may simply have had the progression delayed by the bracing as you mention below.

    and since there are always...always...those people who don't follow "the book"...or what the statistics say will probably happen...what does a parent trust?
    They should trust their surgeon to interpret the reserarch for them. If the Scoliscore results hold, the risk of progression to surgery range with a score of <41 is zero.

    it is so hard to look backward, as hindsight is 20/20...to say "we shoulda," or we "coulda"....

    i don't know that i think bracing does anything but delay...but i don't blame a single parent for wanting some "insurance"...i know you don't either...
    I understand a parent wanting insurance but that isn't what is on the table with Scoliscore. A large majority of AIS cases with small curves will not progress to surgery range and they can identify who these children are. The news is not that a large percentage won't reach surgery range as that was known before. The groundbreaking aspect is they know who won't progress. This is individual-based medicine. If it holds then Ward/Ogilvie might rightly be considered for the Nobel for saving all these kids from bracing.

    So rather than being a type of insurance, bracing might actually be unethical for kids with a Scoliscore of <41. And that is most kids with small curves.

    as a special ed teacher, years ago i went to Newington Childrens' Hospital in CT to look into what was done for kids with scoli...this was back in the 1970's...the guy there told me that if my curve had been found when i was younger, they would have recommended bracing me as a kid (that would have been Newington Childrens recommendation, anyway)
    course, i'm pretty darn sure i woudn't have worn a brace, knowing how i was back then...but that's just me...

    so i wonder how much has changed since back then...

    jess
    Well, the knowledge that most kids with small curves will never reach surgery range was not changed. On the contrary, it has been completely validated by Scoliscore.

    If you were recommended a brace and didn't wear it, you have ground to stand on in that it would not have made a difference in your outcome, especially if you have a high Scoliscore.
    Sharon, mother of identical twin girls with scoliosis

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    thanks for the info, Sharon...much appreciated

    but... it is that word "most" that bothers me...

    just from my own experience, i am fairly sure my curve was under 40 degrees at skeletal maturity...but it did progress...i am not sure why it didn't bother me (pain) before age 31, but i vaguely remember a doctor i saw only once mention scoli to me when i had a physical for college, around age 16- 17...

    jess
    Last edited by jrnyc; 01-04-2011 at 07:53 AM.

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    Quote Originally Posted by jrnyc View Post
    thanks for the info, Sharon...much appreciated

    but... it is that word "most" that bothers me...

    just from my own experience, i am fairly sure my curve was under 40 degrees at skeletal maturity...but it did progress...i am not sure why it didn't bother me (pain) before age 31, but i vaguely remember a doctor i saw only once mention scoli to me when i had a physical for college, around age 16- 17...

    jess
    Oh I think I see what you are saying.

    I don't think it is claimed that curves <40* at maturity won't progress. I think it is claimed that "most" curves <30* at maturity don't progress to surgical range.

    Also, I don't think Scoliscore is claiming that all curves that are subsurgical at maturity like yours have a score of <41. I think it is clear that some curves between 30* and 40* at maturity must have a scoliscore >41 because they can and do progress to surgical range. A curve of <40* is not thought to be protective against progression. Only the curves <30* in that group are thought to be so.

    I am using "most" not to just indicate that some large unidentified fraction of kids won't progress.

    I am using "most" because Scoliscore indicates not only that most kids with small curves won't progress (something already known) but can determine EXACTLY WHICH KIDS will progress. It is on an individual basis. It isn't arm-waving. The "most" comment is just a summary statement of the KNOWN INDIVIDUAL results, not a general comment without knowing what individual cases will do.

    For an individual kid, per these results, if the Scoliscore is <41, that child's curve WILL NOT PROGRESS past 40* per shte results in hand. That is why Lonner immediately pulled that girl out of hte brace when the score came back <41. He is resting that decision of the results to date for Scoliscore's accuracy at predicting curves that will not reach 40*.

    The days of arm-waving and use of averages are waning for the conservative treatment game.
    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."

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    For the elbenty-millionth time, this isn't my field.

    And I claim that is obvious from my posts. Just ask hdugger.

    Posting a claim that I or someone like me is associated with BrAIST is a reflection of your inability to follow along and to master the fact case here.
    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."

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    The scolioscore only measures the chance of progressing to surgical territory as an adolescent, is my understanding. It says nothing about the chance of progressing to surgical territory as an adult, or of living with a painful curve that only reached 40 degrees as an adolescent.

    So, if all you're concerned about is whether your child is going to have to have surgery before their 18th birthday, then, by all means, rely solely on the scolioscore.

    OTOH, if what you're concerned about is their lifelong risk of requiring surgery, or the risk of having a painful presurgical curve all of their life, then the scolioscore isn't going to be of any help at all.

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    Quote Originally Posted by hdugger View Post
    The scolioscore only measures the chance of progressing to surgical territory as an adolescent, is my understanding. It says nothing about the chance of progressing to surgical territory as an adult, or of living with a painful curve that only reached 40 degrees as an adolescent.

    So, if all you're concerned about is whether your child is going to have to have surgery before their 18th birthday, then, by all means, rely solely on the scolioscore.

    OTOH, if what you're concerned about is their lifelong risk of requiring surgery, or the risk of having a painful presurgical curve all of their life, then the scolioscore isn't going to be of any help at all.
    Having all the concern in the world for those other concerns doesn't move the needle ONE IOTA towards there actually being an effective conservative treatment approach.

    That's why conversations that go like this are less than useful.

    Everyone is concerned with all those things. Only some subset of folks realize there is no proven conservative treatment that can change the course of a kid irrespective of their Scoliscore. That's why it is important to talk about the ethics of bracing now that Scoliscore is on the scene.
    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."

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    By the way hdugger, are your saying it was unethical for Lonner to take that girl out of brace with a Scoliscore of <41?

    Just curious based on your remarks above. I am almost guessing you would say yes.
    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."

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    Quote Originally Posted by Pooka1 View Post
    By the way hdugger, are your saying it was unethical for Lonner to take that girl out of brace with a Scoliscore of <41?

    Just curious based on your remarks above. I am almost guessing you would say yes.
    I think doctors are over-concerned with the magical surgical cutoff number for adolescents, and under-concerned with the life-long course of the disease.

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    Roger that.

    Now what would you have surgeons do in the situation with a kid with a Scoliscore of <41 given the bracing literature?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

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    Also, what is out there to help with "life-long course of the disease" aspects irrespective of Scoiscore? Please be specific as in something a surgeon can actually and plausibly tell a kid in real life at this moment.

    Thanks.
    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."

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    Quote Originally Posted by Pooka1 View Post
    For the elbenty-millionth time, this isn't my field.
    You are an advocate and a promoter of this test and surgical methods whether this is your field or not. It is obvious to anyone.

    The difference between my daughter's deformity at 35 degrees and at 30 degrees is profound. I resent ANYONE assuming that these kids and parents are going to be happy when they are diagnosed with a small, unnoticeable curve and end up with a pronounced deformity that is subsurgical, due to a test that is basically the cost of a brace. You saw this yourself with your daughter when she stopped bracing because she didn't like the look of her back when it reached the upper thirties.

    A curve over 35 degrees, especially for lumbar curves, increases the odds of an increasing curve, increased deformity and pain and surgery as an adult. I'm sure everyone will be thrilled to submit to the new genetic paradigm.

    Your advocacy is duly noted when you decide to drop the known, built-in, error rate and make the following claim:

    "A Scoliscore of <41 was associated with a zero risk of progressing to surgery range. So it isn't even "pretty sure," it is "will not reach surgery range" if the score is <41. Those are the results to date and we will have to see if they hold."

    How do you know those are the results today? How do you happen to have all this inside information, that any lay person wouldn't possibly have? Or do you just like to make up your claims? Why do you ignore the following DESIGN of the test:

    "Using the test, about 75 percent of the patients were accurately identified as low risk, with a 1 percent chance of progressing to a surgical curve."

    99% is not 100%, but this is just quibbling, because I can't imagine anyone is going to be happy with having a 30-40 degree curve due to the test when it could have been much smaller, and no doubt won't get surgery unless it's at 50 degrees since their growth will be complete. So that leaves curves of 30-50 degrees to just deal with it. I'm afraid your promotion, once this is completely explained to patients and their parents, will fail.

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    Quote Originally Posted by Ballet Mom View Post
    How do you happen to have all this inside information, that any lay person wouldn't possibly have?
    I never realized the published abstract was "inside information." You read it yourself so your have inside information also.

    "Using the test, about 75 percent of the patients were accurately identified as low risk, with a 1 percent chance of progressing to a surgical curve."
    That's taking the <50 cutoff.

    I have continually been writing <41 because that was associated with 100%. And you knew this because we have been through it.

    If you would quell your emotions and start using intellect then you would not be posting things like this.

    Do you think Lonner was unethical in taking that girl with a Scoliscore of <41 out of brace? Yes/No?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

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    Forgot to mention... the <41 crowd is "about 75%" per the abstract as far as I can tell. So my statement as written reflects the material in the abstract.
    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."

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