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Thread: Dr. Hey has seen "countless cases" of progression in "stable" scoliosis

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    Dr. Hey has seen "countless cases" of progression in "stable" scoliosis

    http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html

    I shared with him that the curve could remain stable, but due to the asymmetric loading of his lower lumbar discs, that there was a possibility that the lower curve could collapse, and lead to a painful degenerative scoliosis that could even result in spinal stenosis. I've seen countless cases of patients in their late 20's, 30's, 40's, 50's, 60's and beyond who were told their curve was "stable" and they were "done growing" as a teenager finishing off treatment for adolescent scoliosis, only to find out a few or many years later that the curve had begun to progress again. Logan is extremely bright, and seemed to get the long-term choice he faced, given the possibility of realigning his spine now when he is younger, and possibly be able to save the bottom 2 or 3 discs for a lifetime, while also enjoying a better posture.
    This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything >30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

    This paradigm seems to need revisiting.
    Last edited by Pooka1; 12-22-2019 at 01:51 PM.
    Sharon, mother of identical twin girls with scoliosis

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    None of this is science because the only person in this sandbox who has worked in this field is Dr. McIntire.

    These are lay observations as is everything that anyone here writes except Dr. Mcintire BY DEFINITION.

    Dr. Hey's observations in that post do NOT seem to comport with the paradigm. We can't know if it actually does not comport because this isn't our field.

    I notice you are reading my posts after claiming over and over that you don't read them and suggesting to "countless" others to ignore me. Does that comport with honesty?
    Sharon, mother of identical twin girls with scoliosis

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    By the way, Dr. Hey's observation comports with the studies about when bracing is done and which angle is generally protective. Unless you are left with a curve <30* after bracing which I am guesstimating is hardly every the case given the bracing treatment window, it isn't generally protective against progression.
    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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    i personally do not believe any of the guidelines...
    my curves were definitely below 30 at maturity...
    made no difference to progression....
    i dont buy the guidelines....at all...
    i think there are probably many factors that can
    have an effect on progression once curves are there....
    i doubt medical science knows all of them or understands
    most of them....

    jess

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    I understand how statistics work and can see both sides of this. I would be interested in hearing about more surgeon's opinions than just Dr. Hey's. He is very selective of who he chooses to be his patients, so that skews his data tremendously.

    I personally have two curves one >30 and one <30 at maturity. BOTH curves have progressed in adulthood. I realize that I am an "outlier", but there are probably more like me that just don't go to the doctor and never find out OR are not reported for whatever reason.

    I would bet that each doc has their own take on things. Pushing for earlier fusions has pros and cons as does any other treatment meant to avoid or postpone surgery.
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    The interesting question for me from all this was why is the bracing window 25* to 40*? Why 40* at the top end? I don't know but I think it might have to do with the thought that curve below 40* at maturity would not likely become surgical. But in fact this bracing window ending at 40* is subject to the identical criticism as Scoliscore in that low risk entails being below 40* at maturity.

    If 30* is generally protective against progression to surgical range then the bracing window probably should be 25* to 30*.

    Now it is suggested that most braced kids are braced needlessly. But that has been determined at point of maturity as far as I know. To the extent that most braced kids are between 30* and 40*, and if Dr. Hey's observations do suggest something, then these kids might eventually go on to progress.

    I'd like to see long term on people, braced or unbraced in the 30* to 40* range. It seems like Dr. Hey might suggest this group progresses more than previously thought which should ramify to the brace treatment window question as per that comment. It may not be brace or surgery for most kids. It may be brace and surgery for many even among the "successfully" braced.

    There is still so little known in this field and that fact should be conveyed to parents and kids. Bracing is HIGHLY experimental.
    Last edited by Pooka1; 09-01-2012 at 10:38 AM.
    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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    All methods of treating scoliosis are highly experimental. Looking over the course of history, we can see a lot of damage done, even deaths, from surgery. I don't know how many deaths can be attributed to bracing. There are also deaths attributed to no treatment. So here we are. There is NO CURE for this dreadful disease. Yes, we have to weigh out what is best for each patient so agree with Hdugger on that point. If the person isn't in pain, or horribly disfigured, or have their life in jeapardy, they surgery should be postponed. Better technology is coming out all the time.

    I personally agree with you, Sharon, about the bracing range of 25*-40* not making any sense. There is NO protective range for nonprogression as far as I'm concerned. My compensatory curve USED to be in the teens and is now over 40* if I would go by Dr. Hey's or Dr. Tribus' measuring techniques. My smaller curve seems to be driving the larger one, ironically. I don't think that there are any "normal" cases. If bracing is to be used to try to "prevent" surgery, then they need to start bracing very early and change the criteria to 10*-25*. The 25*-40* could be used to "postpone" surgery. And those of us with 40*-50* curves just have to sit it out and wait. Personally, though, if the criteria were changed to the above suggestion, WAY too many kids would be braced unneccesarily, as if that isn't already happening. Kids like my son, who self corrected, would be braced and called a "success".

    The point of my post is to say there are no easy solutions or "right" answers. I think that kids that are braced SHOULD be told that they may still need surgery on down the road. It's only fair.
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    Quote Originally Posted by rohrer01 View Post
    All methods of treating scoliosis are highly experimental.
    That fact is completely obscured by it being a standard of care in a certain curve range. This situation is beyond uncanny. It is surreal. Bracing is still so experimental that a completely non-braced control group is going on as I type. Ask me if I think there is a single parent or child facing bracing who is ever told that. If they were told the truth, I predict there would be A LOT less bracing, compliance, etc. Parents know this. Some see the fact that bracing hasn't been disproven as justification for not laying out the straight dope. I think that decision should be left to each kid/parent.

    I personally agree with you, Sharon, about the bracing range of 25*-40* not making any sense. There is NO protective range for nonprogression as far as I'm concerned. My compensatory curve USED to be in the teens and is now over 40* if I would go by Dr. Hey's or Dr. Tribus' measuring techniques. My smaller curve seems to be driving the larger one, ironically. I don't think that there are any "normal" cases. If bracing is to be used to try to "prevent" surgery, then they need to start bracing very early and change the criteria to 10*-25*. The 25*-40* could be used to "postpone" surgery. And those of us with 40*-50* curves just have to sit it out and wait. Personally, though, if the criteria were changed to the above suggestion, WAY too many kids would be braced unnecessarily, as if that isn't already happening. Kids like my son, who self corrected, would be braced and called a "success".
    Well scoliosis appears to be so variable that it is probably technically true that no angle is protective. I mean we have people with straight spines developing adult onset scoliosis. We have testimonials with surgeons telling patients that it isn't unusual that a curve in the lower 30*s at maturity would progress to surgical range in a young adult. Those observations comport with your suggestion that there is no protective angle. There is probably a trend in that the lower the angle at maturity the less likely is progression to surgical range. But I bet that trend is almost completely obscured by the variability. I think if anyone gathered the data, it would be breath-takingly jaw-dropping if the R2 was above 0.2. Or even above 0.1. Thus it is virtually impossible to predict in any given case. And we still don't know if bracing only delays rather than avoid surgery in any case. Kids/parents need to be told that directly.

    I agree restricting the bracing window to lower angles will raise the already sky-high unnecessary treatment rate, perhaps to near 100%. But anything about some high percentage will be vary hard to separate from natural history which is up there also. It will never be shown in my opinion.

    The point of my post is to say there are no easy solutions or "right" answers. I think that kids that are braced SHOULD be told that they may still need surgery on down the road. It's only fair.
    Kids/parents being told the straight dope is also my point.
    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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    statistics don't mean crap...pardon the expression...when
    it happens to YOU...
    the probability, the liklihood, etc etc doesn't mean a hill
    of beans when YOU are the one the condition or the disease
    happens to....
    i had to study statistics in school for various Masters degrees...
    bored me then, bores me now....

    the fact that i was in a group of people who were less
    likely to have their curves progress is meaningless to me...
    the same way that my dog was not "supposed" to have
    the medical problem he had...but he DID...
    and i always question statistics...how big a group was studied,
    how long ago was the study done, who conducted the study, etc....

    jess

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    Quote Originally Posted by jrnyc View Post
    statistics don't mean crap...pardon the expression...when
    it happens to YOU...
    the probability, the liklihood, etc etc doesn't mean a hill
    of beans when YOU are the one the condition or the disease
    happens to....
    i had to study statistics in school for various Masters degrees...
    bored me then, bores me now....

    the fact that i was in a group of people who were less
    likely to have their curves progress is meaningless to me...
    the same way that my dog was not "supposed" to have
    the medical problem he had...but he DID...
    and i always question statistics...how big a group was studied,
    how long ago was the study done, who conducted the study, etc....

    jess
    You are right about these studies probably being very underpowered. The other issue is the huge variability which makes it "not unusual" for a person like you who is not thought to progress to progress. I don't blame you for being skeptical.

    The surgical studies tend to have way larger groups than these other studies opining about progression or brace treatment and that will propagate to the out years. And due to the nature of surgery, it is just more easily nailed down than general progression or bracing efficacy.

    Surgery for many adults is a choice. It is not really a choice for kids because surgery is not done in a vacuum. While there seems to be near universal (I have seen one surgeon claim it isn't necessary) agreement that fusing kids is better than not fusing them, you do not see that level of agreement about bracing. Bracing is clearly a choice because it is clearly experimental with little learned in the decades of study. In contrast, much has been learned about surgical approaches in that same time. Surgical approaches and instrumentation have advanced but bracing has not. You could even say it has taken a step back with Spinecor. And we do have some longer term data (at least two decades) indicating surgery on kids was the right choice. I don't know about the level of agreement about progression in general.. I wish I knew but I can say the testimonials seem to diverge from some of the paradigms.

    So the continual conflating of discussions in this thread and others about conservative treatments with surgery is a complete non-sequitor. Also conflating surgery for adults with surgery on kids is misleading in the extreme... the outcomes are known to differ in may regards.
    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 hdugger View Post
    Likewise, what happens to the individual is meaningless to statistics.
    This is not true. What happens to the individual is where we get our data sets. As for the other way around, it is true that statistics is meaningless for the individual IF they are in the outlier range. The problem is, no one knows where they fall in the data set. Therefore, making use of the statistics, as hdugger mentioned, before a decision is made is really all an individual has to go on.

    As far as avoiding surgery for teens...??? The only "good" thing I see in that is that there "may" be better technology later on. Surgery is MUCH less dangerous for teens than it is for adults. They heal faster and have generally less pain during recovery. Adult spines are stiff, degenerative, fragile, and the deformities have usually been in place for so long that the ribs and vertebrae resist taking on a new shape. Thus the need for more dangerous procedures such as osteotomies, lamenectomies, costoplasties and the like.

    In retrospect, if given the choice, I would have chosen the old Harrington rods for myself at 16. It could have prevented the slew of problems I'm having now and I could've eventually had them removed if need be. I realize that they weren't designed three dimensionally, but I have severe hypokyphosis now, anyway.

    The sad thing is my doctors DID predict my future quite accurately. They said my scoliosis would eventually progress and it did. They all said I would eventually need surgery. So knowing this, why did they not act? Putting me in the watch and wait category for the last 27 years hasn't improved MY quality of life any as far as I know.

    Taking this into consideration, why would anyone want to put off a surgery for an adolescent KNOWING that they will need surgery eventually? That seems obsurd, unless one is hoping for a miracle cure, which is also absurd.

    Maybe I speak in ignorance so would love to be enlightened.
    Last edited by rohrer01; 09-05-2012 at 04:10 PM.
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    Hi Rohrer, why are you sure that someone may knows if a surgury will be inevitable?

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    Quote Originally Posted by flerc View Post
    Hi Rohrer, why are you sure that someone may knows if a surgury will be inevitable?
    I'm not so sure of that. Surgery can be avoided by anyone, even the severe cases. It might mean a poorer quality of life for some and a very shortened life span for those whose deformity is very severe. You have to weigh out what quality of life do you want or how long you want to live in severe cases. I'd say that if someone were symptom free with a good quality of life and no threat to life that there would be no reason to rush into a surgery like this. However, kids don't always know what they're up against. If they are having pain as teenagers, you can be sure that they will be in very sore straights as they get older. Why not fuse them young and give them a chance to live a relatively pain free life?
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    Quote Originally Posted by hdugger View Post
    I'm not sure how surgeons are weighing the risk, etc, of surgery for teens vs. adults. I've mentioned in a few times, but our surgeon (who has done a ton of cases) is in no particular hurry to perform surgery on my son. When I asked him, he felt as if the risk were equivalent, although the recovery time was longer in older adults. He did say to get it done before 60, but he didn't seem to be drawing any particular distinction before that.

    But, my son is still pretty young, even though he's not a teenager. And his curve is big enough to qualify him for surgery. If surgeons felt strongly that young was always preferable and that there wasn't a downside, I would think they'd be pushing him to have surgery now. He's seen three surgeons - two SRS - with a curve at 50+, and noone has ever suggested that he have surgery.

    Clearly, Dr Hey swings the other way, and I'm sure he would have suggested surgery long ago. But noone I've seen ever has. The one time Hart mentioned it was in response to a question from my son asking if he should have it. His response was more or less, "Yes, if you'd like" but he's never brought it up again.
    Your son's case is unique because of his deformed vertebra and syrinx. I wouldn't be in a rush to operate on him either if he isn't in a lot of pain. The location of his curve also makes it more dangerous. I totally understand why neither you or your son are in a big hurry to have surgery.
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    Quote Originally Posted by rohrer01 View Post
    Your son's case is unique because of his deformed vertebra and syrinx. I wouldn't be in a rush to operate on him either if he isn't in a lot of pain. The location of his curve also makes it more dangerous. I totally understand why neither you or your son are in a big hurry to have surgery.
    That's a good point. Hdugger's son has congenital scoliosis which is exquisitely rare compared to IS and is a completely different animal in many ways. And her son has a high T curve which is more problematic that the great run of T curves which constitute the great run of curves FULL STOP. Scoliscore is irrelevant to her son. Bracing is probably irrelevant to her son. Apples and oranges squared. Yet she constantly uses her son's case as a "learning point" for IS which is is not.. it is a non-sequitor for IS.

    I guess we can't assume we are all talking about IS and have to specify it every time.
    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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