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Thread: Scoliogold?

  1. #61
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    That is unpublished and apparently unpublishable.

    The person who measured the Cobb angles was one of them apparently. If that person had been independent along with the radiographer, the results would probably be different. There is a big source of error in these measurements. Recall that Martha Hawes had three independent guys measure her curve and the measurements were wildly different.

    The biggest problem with the data is the "so what?" factor. At this point it is not unusual for any PT treatment to get improvements in a few weeks. The problem is maintaining it and how much exercise you have to do the rest of your life and sticking with it and hoping not to get hospitalized or something. It's all PT dependent.

    These PT treatment papers should not be published with only a few weeks of data. They should have a lower limit of 2-5 years out before publishing. Surgical papers often publish at 2 years but with fusions, the increases in the curves are known to be minimal much further out than that. In PT we rarely if ever see long term papers for a reason. None of it holds after a few weeks-months and probably many people stop exercising either voluntarily or involuntarily.
    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."

  2. #62
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    Quote Originally Posted by Pooka1 View Post
    That is unpublished and apparently unpublishable.

    The person who measured the Cobb angles was one of them apparently. If that person had been independent along with the radiographer, the results would probably be different. There is a big source of error in these measurements. Recall that Martha Hawes had three independent guys measure her curve and the measurements were wildly different.

    The biggest problem with the data is the "so what?" factor. At this point it is not unusual for any PT treatment to get improvements in a few weeks. The problem is maintaining it and how much exercise you have to do the rest of your life and sticking with it and hoping not to get hospitalized or something. It's all PT dependent.

    These PT treatment papers should not be published with only a few weeks of data. They should have a lower limit of 2-5 years out before publishing. Surgical papers often publish at 2 years but with fusions, the increases in the curves are known to be minimal much further out than that. In PT we rarely if ever see long term papers for a reason. None of it holds after a few weeks-months and probably many people stop exercising either voluntarily or involuntarily.
    That's what I thought. However when I speak to Scoligold they tell me that they have valid research! How can they say that and why do they except me to believe it. Yet they are registered with HCPT with the CSP both national safeguarding bodies!.

    In the UK there is no treatment path for non surgical adult scoliosis patients. I firmly believe that decent PT that addressed the individual curves would be helpful. Because there is no evidence that it can halt progression the 'baby is thrown out with the bathwater'

    In other words if ordinary PT is beneficial for back pain then it seems logical that targeted PT would be beneficial also. In UK you cannot get decent continuous Physio ( with the same person) on the NHS. You 'may' get referred for a course of physio but it will rarely be with the same person each time and you can be assigned anyone (newly qualified etc.,) with NO knowledge of scoliosis and a mind filled with incorrect out of date data ( eg scoliosis doesn't hurt , scoliosis doesn't progress in adulthood). It is not a lot better if you pay privately because the private physios have the same training as the NHS ones. Something has to change!. I am constantly asking my physio if I should have the same treatment 'both sides' because I am not symmetrical - he does not know any different. I worry about the progression all the time. I am keen on pursuing Scolisgold because they are physios and so are within the medical establishment ( unlike chiros).


    I have a 59 * curve (measured last month); 6 months ago it measured 55* and 2 years ago 53*. The consultant told me at the latest consult that it was progressing slowly- I have to accept a certain amount of measurement error. ( surely they have an app to do this- he does not get out a protractor) I can tell it is progressing because my bras don't fit properly any more and I have more pain. I have a lumbar curve with similar measurement difference ( smaller curve of 40) and a new cervical curve progressing like made 49* (from 0 15 years ago) which I am told is compensatory. I am in so much pain- physio helps - I pay for it. When I stop work I will not be able to have physio. What do I do - where do I go with this?

    Just as an aside Can any give me a figure for the percentage of adults with non surgically treated scoliosis ( all types) in US.
    Last edited by burdle; 04-14-2016 at 11:28 AM.

  3. #63
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    Quote Originally Posted by burdle View Post
    Because there is no evidence that it can halt progression the 'baby is thrown out with the bathwater'
    Certainly nobody may say that. You only may say that you don't know about evidence but not that it doesn't exist. And not only because some studies as SEAS study showing even some reductions in aduts through years. Tissues may be altered with PT and if adults would have normal tissues there would not be any curve. It would be different during growth of course and of course some tissues are much difficult to be altered in the right way than others, as bones, but even bones remodeling in adults is a fact, the more difficult of all surely are ribs even more than vertebras but surely also in some way may be remodeled too.
    In adults there is an arm wrestling between what we can do against natural bad changes and the gravity force. And of course nobody is talking about reaching 0, something surely impossible, but about halt progression, if someone is sure that cannot be achieved I wish to hear what have to say.
    Maybe you would be PT dependent for all your life but with fusion would not be really different because you cannot undo it, and it doesn't seems to be a good solution at least for adults.
    But there are others possibilities, non fusion and not (exactly) PT.

  4. #64
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    Quote Originally Posted by flerc View Post
    Certainly nobody may say that. You only may say that you don't know about evidence but not that it doesn't exist.
    Everyone can say that. Where is the evidence? If there was evidence then that would be big news. People would do that and there would be a lot less scoliosis fusions.

    But we don't see that. And I am not talking about short term.

    PT might prevent progression but it has to be shown. Until it is shown, there is no evidence.
    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. #65
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    You seems to think that evidence is only what is published and that everything is published.
    If you don't know about any successful case, you cannot be sure that progression may be stopped with PT, and if you know about some cases but they are not shown in any article, you cannot prove it HERE.
    But also, you cannot prove that there is no any case, you cannot prove that there are not people knowing about one case (it would be evidence for them). You could prove it if you could prove that it would be something impossible just only one successful case. May you do that?

  6. #66
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    Quote Originally Posted by flerc View Post
    If you don't know about any successful case, you cannot be sure that progression may be stopped with PT,
    That's not the problem. There are cases where progression stopped while people were doing PT. But their progression might have stopped even if they weren't doing PT. This field of research is extremely difficult. Nobody is failing to do a good job. It is just that the job of showing the efficacy of PT is beyond the ability to show it in my opinion. Like String theory. It may be right but we can't show it.

    Here's an example... Dingo's son is doing PT and his curve is holding. So Dingo and others think the PT is holding the curve.

    Gayle's son has a similar curve. He does no PT. His curve is reducing.

    So here are the possibilities for Dingo's son:

    1. PT is holding but not reducing the curve.
    2. PT is preventing the curve from reducing.
    3. 1 & 3.
    4. The PT is doing nothing and the curve is holding on its own.

    It is impossible to decide among those. That is why there will never be evidence in my opinion.
    Last edited by Pooka1; 05-30-2016 at 10:07 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."

  7. #67
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    Interesting! Evidence is really evidence if nobody understands it?
    Close to the famous question "If a tree falls in a forest and no one is around to hear it, does it make a sound?".. and that from the Einstein and Bohr's debate 'is the Moon there when we are not looking?
    But what if someone in the future can see what we cannot?. Some great genius as Cantor suffered that unfair lack of understanding of people in his time, his demonstration were not recognized until years after his death, and people saying that were not really a proof about what he said were of course wrong.
    So, is not possible to say 'there is no evidence' just only because our knowledge is not enough yet to know now if some case is really an evidence or not.
    But it might be possible anyway to prove if there are evidence or not, following a big number of cases doing some kind of PT against a control group. It would be sure possible if the successful cases would be in a significant percentage. If not, probably it would not be possible even if those few cases were really an evidence (progression stopped because PT).
    Anyway, I think we were talking about adults and with big curves. Sure kid's cases with mild curves are very much different, everything seems to be possible during growth and sure in those cases, too much detailed and exact information of every particular case would be needed even in the future to know if they are really an evidence or not.
    In adults I think that there are studies of natural history showing progression in big curves, if Burdle's progression is stopped after doing some kind of PT, I think that nobody may believe in an spontaneous improvement, and nobody may say that it never happened something like this.

  8. #68
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    Quote Originally Posted by flerc View Post
    In adults I think that there are studies of natural history showing progression in big curves, if Burdle's progression is stopped after doing some kind of PT, I think that nobody may believe in an spontaneous improvement, and nobody may say that it never happened something like this.
    On this group, there have been cases of adults who are NOT doing PT who have large curves that have hung there for YEARS. Some big curves do NOT progress. So you can never know if the lack of progression was due to PT or not.

    Some of these people have gotten fused for the pain alone since they don't have progression. Focusing on just halting progression if many or most of these people still need fusion to relieve the pain alone is to not see the big picture. Progression is only one aspect of the problem of having a moderate or large curve over the years and the damage just having that does even if it doesn't progress. This is why some surgeons advocate fusion... to avoid damage and surgery at a more advanced age. Age seems to be a predictor of complications as a general rule.

    In other words, even if PT stopped progression, that may save very few people from needing fusion which is the end game here. Don't get side-tracked.
    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."

  9. #69
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    Quote Originally Posted by Pooka1 View Post
    On this group, there have been cases of adults who are NOT doing PT who have large curves that have hung there for YEARS. Some big curves do NOT progress. So you can never know if the lack of progression was due to PT or not.
    I think you are right and probably I also have read it in a study of an extense follow up but I believe it were only cases of perfect symetric doble curve, which I think has clear reasons to fight against gravity force in a better way.
    But anyway I'll assume it would not be the only case (I hope that!) so we cannot know if PT stopped progression or not, but surely is because our knowledge is yet limited for that.

    Quote Originally Posted by Pooka1 View Post
    Some of these people have gotten fused for the pain alone since they don't have progression. Focusing on just halting progression if many or most of these people still need fusion to relieve the pain alone is to not see the big picture. Progression is only one aspect of the problem of having a moderate or large curve over the years and the damage just having that does even if it doesn't progress. This is why some surgeons advocate fusion... to avoid damage and surgery at a more advanced age. Age seems to be a predictor of complications as a general rule.

    In other words, even if PT stopped progression, that may save very few people from needing fusion which is the end game here. Don't get side-tracked.
    It would be the end game if and only if non surgical options fail in avoiding complications like pain or people refuse to continue with PT. Only few cases are saved from fusion? May be, few people refuse surgery even not having complications, the question is the percentaje of adults refusing surgery and not needing it because PT. Again few people? I don't know. To say doing PT is absolutely different to say something as Using Boston brace. Even very different than saying using rigid brace. Vojta has nothing to do with Gpr wich in turn has nothing to do with Sohier wich in turn has nothing to do with SEAS..
    It has not much sense to talk about PT as something homogeneus, so the question should to be how many people avoid surgery doing a particular kind of PT.
    Certainly the question should to be which could be the best PT, and not about the current PT styles but the best possible PT, sure a very different PT merging different principles from current PT methods and last researchs.
    Even the best PT and even merging it with other non surgical options could not guarantee a happy end to every adult? May be but sure that fusion also cannot.
    Last edited by flerc; 05-30-2016 at 11:55 PM.

  10. #70
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    Quote Originally Posted by flerc View Post
    I think you are right and probably I also have read it in a study of an extense follow up but I believe it were only cases of perfect symetric doble curve, which I think has clear reasons to fight against gravity force in a better way.
    No. A case I am thinking of was a typical large T curve. It held at ~50* for over three decades. She was finally fused for pain, not progression.

    I am not aware that it is less likely that double majors progress compared to T curves. I have never read any evidence for that claim. Even triple curves progress.
    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."

  11. #71
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    Quote Originally Posted by flerc View Post
    I believe it were only cases of perfect symmetric double curve, which I think has clear reasons to fight against gravity force in a better way.
    According to this site, your intuition is not correct...

    The risk of progression is higher in scoliosis involving double curves than single curves. Lumbar scoliosis carries a lower risk of progression than thoracic scoliosis.
    http://www.eurospine.org/idiopathic-scoliosis.htm
    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."

  12. #72
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    Quote Originally Posted by Pooka1 View Post
    No. A case I am thinking of was a typical large T curve. It held at ~50* for over three decades. She was finally fused for pain, not progression.
    Is she still here? Do you remember her name?

  13. #73
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    Quote Originally Posted by Pooka1 View Post
    According to this site, your intuition is not correct...



    http://www.eurospine.org/idiopathic-scoliosis.htm
    Yes and also my memory, I thought I have read that symmetric double curves were more stable.. maybe it could be true just only in perfect symmetric double curves. But anyway it also surprised me that thoracic may be more stable than thoracolumbar or lumbar.

  14. #74
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    I agree with flerc here. I am sure I have read several studies stating that well balanced double curves progress less on average and patients have less pain and also that lumbar curves progress more because thoracic spine is more rigid and has ribs and sternum which are holding it in place. Also I am sure I have read one or two studies showing completely opposite...mehh.

  15. #75
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    Quote Originally Posted by flerc View Post
    Is she still here?
    No.

    Do you remember her name?
    Yes.

    We also have a present member with a large stable T curve.
    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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