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Thread: Suggestion going forward

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    Suggestion going forward

    (Reposted from the torso thread)

    This IIS discussion is interesting for many reasons.

    I have a suggestion... perhaps we can have a new area of the forum for people booting up on the literature. People starting on the long, long journey of trying to get their arms around the literature in some small area of scoliosis (which itself is a huge area). It would be people posting papers and commenting on them but there would be a disclaimer that these were not MD/PhDs and that these people have zero training and patients and parents should know that before reading.

    Opinions should fly freely and with gay abandon but counterfactual material should still be out of bounds.

    I think that would be fun and I would contribute my lay speculation. I suggest, "Hysterical Scoliosis" as the name of the area of this forum.

    The problems with not fire-walling this off from the rest of the forum are legion. People will still stumble into the area and misunderstand but hopefully they will ask questions and be told that it is lay speculation.

    The other suggestion about Dingo starting a blog for this material is a good one also. He could post all of that here if appropriately qualified. But that doesn't happen so we need to do something else in my opinion.
    Sharon, mother of identical twin girls with scoliosis

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    I'm copying both Toni and my response from the other thread over here. (Toni, I'll delete yours and have you repost if you prefer)

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    #246 Today, 04:02 AM
    tonibunny
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    Hopefully this is what the Research forum here is intended for? It's fascinating to read studies and speculate on various things to do with scoliosis, but everyone should be responsible for making absolutely sure that they don't mislead anyone else. This is why I'm being extra careful to point out where things are my own idea or point of view

    Maybe it would be a good idea to have a note on the Research forum, stating that the opinions therein are those of lay people with no medical/orthopaedic training (unless otherwise stated)?


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    #247 Today, 09:33 AM
    hdugger
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    I'm in agreement with Toni. I think a forum labelled "Research" with a disclaimer at the top is an adequate wall. It's certainly more safeguarded than most of the information on the net. Beyond that, you have to trust that adults are capable of reaching their own conclusions.

    Beyond posting research, I'd be very interested in gathering some rough data. Specifically, I'd like to start gathering *any* information on people who have reduced a significant curve without surgery. We'd have to define both what is a significant curve and how "reduction" is measured.

    I don't mean this to replace peer-reviewed research, but I would like to have some datapoints that we could look at to begin to get a rough handle on this.

    Pooka, are you in agreement about the reduction of a "significant" curve (whatever we define that to be) never spontaneously reducing? Do we need to confine it to adolescent and adult only? Or can we include juvenile? If we can agree on that, we can look at these data points without worrying about a control group, since the natural progression of the disorder is the control (i.e., since scoliosis curves never reduce on their own, any evidence of a reduction is a data point).

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    Oh, one more thought. I would strongly suggest that the ongoing back and forth about the state of bracing reserch move out of the main forum and down to the research forum. That is the one ongoing discussion which is so co-mingled with regular discussions that I think newcomers are likely to stumble across it and think that we have any idea what we're talking about. I would hate to think that someone would disregard their doctors prescriptions due to our musings.

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    Quote Originally Posted by hdugger View Post
    I'm copying both Toni and my response from the other thread over here. (Toni, I'll delete yours and have you repost if you prefer)
    I'll respond to both of this posts here unless Toni objects.

    *************

    tonibunny wrote:

    Hopefully this is what the Research forum here is intended for? It's fascinating to read studies and speculate on various things to do with scoliosis, but everyone should be responsible for making absolutely sure that they don't mislead anyone else. This is why I'm being extra careful to point out where things are my own idea or point of view

    Maybe it would be a good idea to have a note on the Research forum, stating that the opinions therein are those of lay people with no medical/orthopaedic training (unless otherwise stated)?
    I don't know the "official" purpose statement of the research forum but I can only assume it is for published, peer-reviewed articles or for grey literature as in conference abstracts.

    There is no problem with lay people speculating but when they pretend to have expertise or put their own work in scientific formats then that will mislead most non-scientifically trained people which is the vast majority in this sandbox. I know you are careful. Everyone has been very careful except one player. I don't know why that one player does this unless he really thinks you can just jump in with no training, skim some papers and make statements with the authority that researchers working in the field for years make. When you don't know what you don't know, this seems reasonable and helpful. But in fact, it is NOT reasonable and NOT helpful unless it is carefully qualified as not being done by anyone with any relevant training.

    I think a disclaimer should go on the research forum if the posts continue to be deliberately misleading. Again, you don't want to do things in response to one player but the stakes are potentially high.

    On the other hand, if Linda doesn't feel this is crisis mode then maybe I'm wrong. I just find the whole thing breath-taking because I am used to people carefully not going beyond their expertise in my professional life. Someone did a study once showing that the people least likely to speculate in a given field were PhDs from another field. I suggest the reason for that observation is that PhDs know what it takes to actually get your arms around a subject, what it takes to get to the cutting edge to be able to contribute, and know damn well they didn't do that in the other field. So they are much more guarded about speculating in other fields. I'm sure that contributes to my aghastness over the situation.

    -----------------------------------------------------------------------------------------

    hdugger wrote:

    I'm in agreement with Toni. I think a forum labelled "Research" with a disclaimer at the top is an adequate wall. It's certainly more safeguarded than most of the information on the net. Beyond that, you have to trust that adults are capable of reaching their own conclusions.
    Let's see if Linda weighs in. Maybe she doesn't think it is the huge problem I think it is.

    Beyond posting research, I'd be very interested in gathering some rough data. Specifically, I'd like to start gathering *any* information on people who have reduced a significant curve without surgery. We'd have to define both what is a significant curve and how "reduction" is measured.

    I don't mean this to replace peer-reviewed research, but I would like to have some datapoints that we could look at to begin to get a rough handle on this.
    I'd like to see that too. Actually we have mention here of at least three people who have done that with PT... Hawes, a member's daughter, and a yoga instructor. But that said, I would like to know if there is radiographic evidence for the reduction, what these people have to do to maintain the reduction, and what these curves presently measure.

    Pooka, are you in agreement about the reduction of a "significant" curve (whatever we define that to be) never spontaneously reducing? Do we need to confine it to adolescent and adult only? Or can we include juvenile? If we can agree on that, we can look at these data points without worrying about a control group, since the natural progression of the disorder is the control (i.e., since scoliosis curves never reduce on their own, any evidence of a reduction is a data point).
    As I may have mentioned, this is not my field and I certainly don't know if significant curves have ever spontaneously reduced. My sense is no there is probably no case on record. What we do know is that curves as large as 50* can get that large in adolescent and stay there for at least ~ two decades. So while spontaneous reduction of large curves is probably undocumented, spontaneous halting of progression of these curves is not. This is the Achilles heel in any claim that bracing or PT have halted progression in large curves.

    While I think you might be on okay, if not firm, ground looking at reductions in large curves in adults or maybe also AIS without a control group, I don't think you can do that in JIS or IIS. Too much variability in trajectories. That is my incredibly uninformed notion of what minuscule literature I have read. I think the JIS kids who are back to near straight while wearing Spinecor should be studied more closely to determine if it's the brace or spontaneous correction.
    Last edited by Pooka1; 12-10-2009 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."

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    Quote Originally Posted by hdugger View Post
    Oh, one more thought. I would strongly suggest that the ongoing back and forth about the state of bracing reserch move out of the main forum and down to the research forum. That is the one ongoing discussion which is so co-mingled with regular discussions that I think newcomers are likely to stumble across it and think that we have any idea what we're talking about. I would hate to think that someone would disregard their doctors prescriptions due to our musings.
    Well if everyone would take your advice and have a disclaimer in their signature then that would obviate the problem!
    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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    Quote Originally Posted by Pooka1 View Post
    There is no problem with lay people speculating but when they pretend to have expertise or put their own work in scientific formats then that will mislead most non-scientifically trained people which is the vast majority in this sandbox. I know you are careful. Everyone has been very careful except one player. I don't know why that one player does this unless he really thinks you can just jump in with no training, skim some papers and make statements with the authority that researchers working in the field for years make. When you don't know what you don't know, this seems reasonable and helpful. But in fact, it is NOT reasonable and NOT helpful unless it is carefully qualified as not being done by anyone with any relevant training.
    Actually, I don't think I'm that careful at all, and I do see people suggest all kinds of things pretty emphatically. I just think we're a pretty passionate lot. For that reason, yes, we should have disclaimers up everywhere. Specifically in the research forum, but also in forums where people might be encouraged/discouraged from surgery or bracing. I would really hate to see anyone thinking that any of us knew what we were talking about

    Quote Originally Posted by Pooka1 View Post
    I just find the whole thing breath-taking because I am used to people carefully not going beyond their expertise in my professional life. Someone did a study once showing that the people least likely to speculate in a given field were PhDs from another field. I suggest the reason for that observation is that PhDs know what it takes to actually get your arms around a subject, what it takes to get to the cutting edge to be able to contribute, and know damn well they didn't do that in the other field. So they are much more guarded about speculating in other fields. I'm sure that contributes to my aghastness over the situation.
    I suspect your reaction is due to your specific background is a "harder" science. Medicine is much fluffier than that, as I think we all notice as soon as we start evaluating the research. And the net is much, much, much fluffier still. If you want to make your head spin, go into any political forum and listen to people pounding their fists emphatically about some economic nuance.

    Because of this, I don't think you can do all that much to protect people from themsleves once they venture out of their doctor's office and onto the net. Either they're the cautious type and they'll take it with a grain of salt, or they're not the cautious type and they'll buy whatever anyone is selling. They're not children, after all. They get to make their own decisions regardless of whether or not we think they're fit to do so.

    Quote Originally Posted by Pooka1 View Post
    I'd like to see that too. Actually we have mention here of at least three people who have done that with PT... Hawes, a member's daughter, and a yoga instructor. But that said, I would like to know if there is radiographic evidence for the reduction, what these people have to do to maintain the reduction, and what these curves presently measure.
    Yes, exactly. All of that would be a huge help. There are also several studies showing a temporary reduction in curve. I'd like to know if all of those curves go back to base afterwards or if they retain some correction. For the simpler exercise, like the torso rotation, I'd like to know at what level they'd have to continue the exercise in order to maintain the reduction.

    BTW, one of the things I've noticed about people who maintain the reduction is that they don't just "do an exercise" - they change their lifestyle to remain aware of the curve through their normal activities. That's somewhat akin to the rules for a successful diet, and it does make me wonder if the reason taht exercise hasn't shown more effect is because it's offered as a "discrete" activity, rather then a comprehensive change in the way you live.

    On the other point, no, I don't know that much about JIS either. Does anyone have a sense of how often that spontaneously reduces on its own?

    And on maintaining the curve, yes, that's exactly right. You'd have to have a control group to decide whether exercise/bracing/etc helped maintain a curve. That's why the glimmers of curve reduction are so interesting. Each one is a valid experiment in themselves.

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    Quote Originally Posted by Pooka1 View Post
    Well if everyone would take your advice and have a disclaimer in their signature then that would obviate the problem!
    I do think we need to do more than that. The bracing research just sort of snuck into the regular forums, and I think it's very misleading for people just stumbling across it who don't understand all of our non-credentials.

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    Quote Originally Posted by hdugger View Post
    ... I don't think you can do all that much to protect people from themsleves once they venture out of their doctor's office and onto the net. Either they're the cautious type and they'll take it with a grain of salt, or they're not the cautious type and they'll buy whatever anyone is selling. They're not children, after all. They get to make their own decisions regardless of whether or not we think they're fit to do so.
    At long as someone isn't recklessly flaunting studies and including lay interpretation as a part of the big factual bundle, I agree. Wholeheartedly.

    Regarding exercise (yoga, torso rotation, etc.):

    Quote Originally Posted by hdugger View Post
    BTW, one of the things I've noticed about people who maintain the reduction is that they don't just "do an exercise" - they change their lifestyle to remain aware of the curve through their normal activities. That's somewhat akin to the rules for a successful diet, and it does make me wonder if the reason taht exercise hasn't shown more effect is because it's offered as a "discrete" activity, rather then a comprehensive change in the way you live.
    This isn't aimed at you personally, hdugger, so please don't take it that way: What you're wondering isn't anything new (and I mean no offense by that, either - LOL).

    The insinuation (for lack of a better term) over the years, by various groups (Schroth and CLEAR, among them) that patients who don't enjoy results and/or continued results from exercise are responsible because they're unmotivated - or simply fail to "get with the program" - has always been a sore spot with me.

    With kids/adolescents? I know resistance/non-compliancy is common, and can understand how the concept might fit.

    With adults, however? Especially those who are having extreme pain (i.e., the kind of pain that fostered wacky daydreams about having my spine REMOVED)?

    It's hard for me to fathom exercise would be ignored or discontinued by that group. If someone had proof (and I'm sorry ... I just can't accept 2/3 cases out of ALL the cases as proof ... it needs to be reproducible) 4-5 hours of exercise per day could have alleviated my agony, I would have been all over it.

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    Pam
    Fusion is NOT the end of the world.
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    It didn't sound personal at all.

    I don't mean compliance so much as some kind of informed hyperawareness of the body at all times. For that to work, though, requires that one would know exactly what to be aware of and how to correct it, and I don't think that we know that.

    For the Schroth people, I think they have a pretty good record of reducing a curve temporarily. (And, that's just a vague memory - I could absolutely be wrong about it). Even that is pretty tantalizing. If scoliosis is a fixed curve of the spine, how do they get it stay uncurved for even a few moths? If the muscles are simply unable to hold the spine straight, why is it that they can do it at all? And, what makes it curve back up again? And how do a few people manage to keep it uncurved? I just feel like there's so much we don't know. The party line is that everything in exercise has surely been fully explored by this time, but if that's true, why have I only heard about exercise reducing a curve, even if only temporarily, within the last few years? Did I miss all those previous studies? Or is it something that's only been shown recently. Did the two people who've really held their reduction stumble onto something that they can't fully verbalize? Or were they just different to begin with?

    Anyway, I don't think that anyone currently offering exercise as a treatment has the answers, or we'd have heard about it (and, as I think I mentioned, I doubt the Clear folk ever will).
    Last edited by hdugger; 12-10-2009 at 06:30 PM.

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    Oh, I found a partial answer to the question about JIS - yes, it progresses most of the time:

    "For instance, Robinson and McMaster reviewed 109 patients with juvenile idiopathic scoliosis and found that nearly 90% of curves progressed, and almost 70% of these patients went on to require surgery.24 These rates are much higher than the rates associated with other categories of idiopathic scoliosis. The real challenge is to predict which curves will progress significantly and which ones will not.25 This is discussed in greater detail later in this article."

    Still not sure if it ever spontaneously reduces.

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    Quote Originally Posted by hdugger View Post
    I don't mean compliance so much as some kind of informed hyperawareness of the body at all times. For that to work, though, requires that one would know exactly what to be aware of and how to correct it, and I don't think that we know that.
    If it requires a hyperawareness anything akin to what it takes to get to the upper levels in dressage then I think you would predict an 80-90% washout/failure rate, the same as we see among people trying and failing to get to the upper levels (not even the highest levels).

    In my personal experience, body hyperawareness is VERY VERY VERY VERY hard to achieve.

    For the Schroth people, I think they have a pretty good record of reducing a curve temporarily. (And, that's just a vague memory - I could absolutely be wrong about it). Even that is pretty tantalizing. If scoliosis is a fixed curve of the spine, how do they get it stay uncurved for even a few months?
    I suspect it is asymmetric building of muscles to compensate or simply building up enough muscle to hold the spine in a straighter orientation.

    If the muscles are simply unable to hold the spine straight, why is it that they can do it at all?
    No we have evidence you can build muscle enough to straighten curves spines but it only lasts as long as the muscle which starts to lose tone after ~10-14 days of not exercising (just like in horses BTW).

    And, what makes it curve back up again?
    Stopping the exercise and losing muscle.

    And how do a few people manage to keep it uncurved?
    They are constantly exercising. Hawes admitted she did 4-5 hours of exercise every day for YEARS. I don't think she ever claimed she can stop and retain her correction. I haven't see anyone claim that.

    I just feel like there's so much we don't know. The party line is that everything in exercise has surely been fully explored by this time, but if that's true, why have I only heard about exercise reducing a curve, even if only temporarily, within the last few years? Did I miss all those previous studies? Or is it something that's only been shown recently. Did the two people who've really held their reduction stumble onto something that they can't fully verbalize? Or were they just different to begin with?
    On that torso rotation video, Dr. Samdani, a ped. neurosurgeon, can he heard saying there is no evidence to that date (I think the video was made in 2009) that PT can permanently reduce a curve.

    Anyway, I don't think that anyone currently offering exercise as a treatment has the answers, or we'd have heard about it (and, as I think I mentioned, I doubt the Clear folk ever will).
    Agreed.
    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
    Oh, I found a partial answer to the question about JIS - yes, it progresses most of the time:

    "For instance, Robinson and McMaster reviewed 109 patients with juvenile idiopathic scoliosis and found that nearly 90% of curves progressed, and almost 70% of these patients went on to require surgery.24 These rates are much higher than the rates associated with other categories of idiopathic scoliosis. The real challenge is to predict which curves will progress significantly and which ones will not.25 This is discussed in greater detail later in this article."

    Still not sure if it ever spontaneously reduces.
    Wow. JIS is a white knuckle affair for sure.
    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
    The party line is that everything in exercise has surely been fully explored by this time, but if that's true, why have I only heard about exercise reducing a curve, even if only temporarily, within the last few years? Did I miss all those previous studies? Or is it something that's only been shown recently.
    Well, if you listen to the Schroth people, they've been doing it for 90-something years. Unfortunately, most of the proof is in the form of Weiss' research. While he may technically be an orthopedic surgeon (so I've heard), his "research" and assertions regarding surgery (using ridiculously outdated data) just doesn't do much for his credibility (in my mind).

    That bunch is either highly untrained in running a study/capturing results the medical community will accept, or they aren't achieving what they claim. I think 90+ years is sufficient to get your act together if it's the former. Obviously, I don't think it's the former.

    Quote Originally Posted by hdugger View Post
    Did the two people who've really held their reduction stumble onto something that they can't fully verbalize? Or were they just different to begin with?
    I wish I knew the answer. My GUESS is something along the lines of fluke, scoliosis as a side effect vs. underlying condition, a miracle ... take your pick. Not to sound cynical, but the results can't be duplicated, it isn't normal.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


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    The people whose reductions held are still exercising, no?

    Is anyone (legitimate) claiming they could stop exercising and retain the reduction? I don't think so.
    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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    I think I recall reading posts on this board from one person about their young daughter (4 or 5 maybe) whose mild curve (don't remember if it was as high as 20 but was scoliosis) pretty much vanished--no bracing or anything. So I guess it can happen. Also don't remember if it was juvenile onset or infantile onset.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

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