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Thread: Changes in scoliosis treatment due to Scoliscore

  1. #16
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    Quote Originally Posted by flerc View Post
    vertebral fusion is an easy treatment?

    Or may be hard for some to accept that could be something better than vertebral fusion and the medical community is not looking for it.
    Nobody has said vertebral fusion is an easy treatment. But that doesn't change the fact that it is the only treatment AT THE MOMENT for certain folks.

    Nobody has trouble accepting something could be better than fusion. The researchers are looking for a better answer. None of that changes the fact that NOW there are no guaranteed conservative treatments.


    Sorry if someone feel what I say as an attack, but I hope something different from medical community as so many other people.. a real better solution and no something like that .. how many time we must to wait?
    I wasn't referring to you as attacking.

    The wait time for a conservative treatment is impossible to predict as is the case for any number of other conditions like cancer, diabetes, etc. etc..

    I am suggesting criticizing the researchers in the mean time is irrational.
    Last edited by Pooka1; 07-03-2011 at 10:56 PM.
    Sharon, mother of identical twin girls with scoliosis

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    Question: What do you call alternative medicine that works?
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  2. #17
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    Are the researchers looking for a better answer than vertebral fusion? Why you believe that? I have never read something about that. I have read a lot about the opposite like this 'new solution'.

  3. #18
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    Quote Originally Posted by flerc View Post
    Are the researchers looking for a better answer than vertebral fusion? Why you believe that? I have never read something about that. I have read a lot about the opposite like this 'new solution'.
    The biochemists and geneticists are researching the cause and therefore possible cures.

    The surgeons are just helping people because that is the only game in town until the biochemists and geneticists solve this.

    Are you saying you think the surgeons are doing the biochemical and genetic research or are blocking conservative treatments? What is the evidence for that? Are they all evil?
    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."

  4. #19
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    They are looking for the original cause, not the current cause that is needed to solve a problem. In the BEST CASE they could avoid that people in new generations have scoliosis, but is supposed they would not give a solution to people with scoliosis now. But it seems they have discovered now this original cause: is genetic.

    Iím not talking about evil people, but is obvious that if a century ago they discovered a partial and acceptable solution for that time like vertebral fusion is, they could have discovered a best solution in all this time. If they think that surgery is the only one solution, why they not try another kind of surgery as other people did?

  5. #20
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    Quote Originally Posted by flerc View Post
    They are looking for the original cause, not the current cause that is needed to solve a problem. In the BEST CASE they could avoid that people in new generations have scoliosis, but is supposed they would not give a solution to people with scoliosis now. But it seems they have discovered now this original cause: is genetic.
    AIS has been known to be genetic for a long time. This is not a new discovery. The new thing that is discussed in the OP is the use of 53 genetic markers to predict whether or not a person in a specific population will progress to >40*. The OP is using this as a reason to complain about the lack of effective conservative treatments. That issue is not directly related to Scoliscore.

    Iím not talking about evil people, but is obvious that if a century ago they discovered a partial and acceptable solution for that time like vertebral fusion is, they could have discovered a best solution in all this time. If they think that surgery is the only one solution, why they not try another kind of surgery as other people did?
    The reason they think surgery is the only solution is because that is what the evidence says. All they can do is honestly follow the evidence. Science and evidence are the only game in town.

    Why is it so hard to imagine that this is a very hard medical problem? That is the reality of it. They haven't cured cancer or diabetes yet either. Why should scoliosis be different?
    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."

  6. #21
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    The only one evidence I know is that they never tried something non surgical.
    Maybe scoliosis is something very differrent to diabetes or cancer. Maybe that incremental solutions could be performed with scoliosis. In fact that is what that community is doing, but always under the same paradigm: vertebral fusion! Do you really think that nothing else could be done to improve the solution that they are giving to us?

  7. #22
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    And, why have YOU not come up with the answer?

    It's a little odd to me, to blame surgeons for not finding more answers. It's sort of like saying "let's blame Hippocrates for not knowing how to cure cancer."
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  8. #23
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    Quote Originally Posted by flerc View Post
    The only one evidence I know is that they never tried something non surgical.
    Surgeons suggest non-surgical treatment A LOT.

    1. Surgeons suggest bracing MOST of the time to kids in the treatment range DESPITE their personal reservations about efficacy.

    2. Surgeons suggest PT for pain ALL THE TIME as far as I know.

    3. Surgeons suggest adults (not usually kids) think about whether or not to have surgery MANY TIMES per testimonials here and elsewhere.

    Maybe scoliosis is something very different to diabetes or cancer. Maybe that incremental solutions could be performed with scoliosis. In fact that is what that community is doing, but always under the same paradigm: vertebral fusion!
    This is false. What about the surgeons working on stapling and tethering and Shilla? SHilla involves a very short fused segment but the other options mentioned involve NO fusion.

    Surgeons are not idiots and they are not evil. Try to accept that.

    Do you really think that nothing else could be done to improve the solution that they are giving to us?
    This not being my field (or yours), I have little feel for whether or not something else could be done. But if you think these guys are falling down on the job, go to medical school, become an orthopedic surgeon, and you figure it out. Or get a PhD in biochemistry or genetics and you figure it out.

    In the mean time, stop criticizing the only folks who can help certain patients. The surgeons are the good guys FULL STOP. Your anger over your daughter's situation doesn't change that one iota.

    I'm sorry.
    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. #24
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    Quote Originally Posted by Pooka1 View Post
    Your anger over your daughter's situation doesn't change that one iota.
    POOKA1, PLEASE DONíT SAY THAT I THINK IN THIS WAY BECAUSE MY DAUGHTER, AS I DONíT SAY THE SAME ABOUT YOU BECAUSE YOUR TWINS!!!
    I began critizing this new solution that like others that I also criticized, have never had nothing to do with the scoliosis of my daughter because it was so advanced when we discovered it as I said once. You may see that I agreed with some one with a Phd, critizing in a so very hard way the Watch and Wait (that seems that will be extended) that is refused and criticized by so many people. Do you know that? What do you think? They are evil, stupid or desperate all of them?

    Of course I don't expect it could happen, but it would be great that you and your friend take in mind for a moment that criticizing, that is not the same to hate, it's surely the best way to trigger an improve. Or you think that medical community have reached the perfection and improves are not possible?
    Nobody says that surgeons are idiots!!! I'm sure that vertebral fusion was a geniality of those years. I referred about the forgotten EDF technique as a geniality of a surgeon. I said the same about the Spinecor and I'm sure about the geniality of those surgeons too. But the Spinecor is not an achievement of the medical community as also (Iíll confirm it) is not stapling. Iíll see about tethering.

    I have never heard nobody asking why the discovery of a cure of something so complex as scoliosis was not achieved in so many years, but is something so reasonable to expect the change of an old paradigm to improve the solution that people are receiving since so many years ago and there is not any sign about that.
    That is what I think and of course you could think the opposite and Iíll not interpret it like an attack (as you are doing) if you talk in other way. I have not any interested to fight with nobody in this kind of forums.
    But if your interest is that nobody does such kind of critical, well.. continue in that way. You and your friend are doing an excellent job!.

  10. #25
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    Thank you, flerc, as always, for your thoughtful posts. I, too, am frustrated by the lack of research into Scoliosis in general (scoliosis isn't even listed on ResearchCrossroads http://www.researchcrossroads.org/) and specifically the lack of research in non-surgical approaches. There is a study just recruiting in Poland:

    http://www.clinicaltrials.gov/ct2/sh...liosis&rank=15

    that will look into the long term impact of physiotherapy--it's a nil hypothesis, though, so I don't think they are particularly hopeful. Still, I don't see anyone being serious, in any way, about non-surgical treatments in the US. It makes me sad because the US studies seem to be tied to ways that doctors and companies make money.

  11. #26
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    Quote Originally Posted by hdugger View Post
    My hunch is that, at some point, insurance companies are going to notice that they're spending an enormous amount of money on scoliosis surgery and they'll start looking for cheaper fixes. The recent spate of research attempting to prove that surgery is the only workable solution (even for people with mild curves) is likely an attempt by the surgeons to fend off this movement. But, at $500,000 a pop, I just don't think that's going to be enough to keep the insurance companies from intervening and researching cheaper fixes.
    Absolutely, but the alternatives to surgery (injections, physical therapy, chiropractic, etc.) will have to prove that they work well enough to keep patients out of surgery forever. If most patients eventually have to have surgery anyway, then all the money spent in trying to keep them out of surgery makes treatment that much more expensive.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  12. #27
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    Quote Originally Posted by flerc View Post
    POOKA1, PLEASE DONíT SAY THAT I THINK IN THIS WAY BECAUSE MY DAUGHTER, AS I DONíT SAY THE SAME ABOUT YOU BECAUSE YOUR TWINS!!!
    Fer, you can't say the same about me because I am not criticizing the surgeons.

    I began critizing this new solution that like others that I also criticized, have never had nothing to do with the scoliosis of my daughter because it was so advanced when we discovered it as I said once. You may see that I agreed with some one with a Phd, critizing in a so very hard way the Watch and Wait (that seems that will be extended) that is refused and criticized by so many people. Do you know that? What do you think? They are evil, stupid or desperate all of them?
    I'm not sure I understand. Are you talking about Dr. McIntire? He is the only one on this group to my knowledge with a doctorate in a relevant area.

    Folks who don't have to wear the braces and would want their kids to wear a brace even with a very small but still unknown chance of success tend to be easy with their criticisms of watch and wait.

    Of course I don't expect it could happen, but it would be great that you and your friend take in mind for a moment that criticizing, that is not the same to hate, it's surely the best way to trigger an improve. Or you think that medical community have reached the perfection and improves are not possible?
    I completely agree with debating ANYTHING. EVERYTHING is on the table including things that carry a social taboo which I won't name. Medicine has plenty of problems left to solve.

    Who is my friend?

    Nobody says that surgeons are idiots!!! I'm sure that vertebral fusion was a geniality of those years. I referred about the forgotten EDF technique as a geniality of a surgeon. I said the same about the Spinecor and I'm sure about the geniality of those surgeons too. But the Spinecor is not an achievement of the medical community as also (Iíll confirm it) is not stapling. Iíll see about tethering.
    If EDF worked, every surgeon would be recommending it like they now recommend bracing which has a very spotty track record and yet they still put so many kids in braces. And bracing is a much harder treatment than PT.

    I have never heard nobody asking why the discovery of a cure of something so complex as scoliosis was not achieved in so many years, but is something so reasonable to expect the change of an old paradigm to improve the solution that people are receiving since so many years ago and there is not any sign about that.
    That is what I think and of course you could think the opposite and Iíll not interpret it like an attack (as you are doing) if you talk in other way. I have not any interested to fight with nobody in this kind of forums.
    I am not attacking you. I don't understand your argument if you say it doesn't involve criticizing the surgeons. There are probably not a million ways to think about non-fusion surgical stabilization of scoliosis. I don't think the problem is a failure of imagination but I have no idea.

    But if your interest is that nobody does such kind of critical, well.. continue in that way. You and your friend are doing an excellent job!.
    Who is my friend? And I am very sure a surgeon would "welcome" my criticism of him about as much as I would "welcome" a surgeon's criticism of how I do my science which is to say not at all. There is no overlap.

    I am not attacking you, Fer. I like you.
    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."

  13. #28
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    Quote Originally Posted by aterry View Post
    Thank you, flerc, as always, for your thoughtful posts. I, too, am frustrated by the lack of research into Scoliosis in general (scoliosis isn't even listed on ResearchCrossroads http://www.researchcrossroads.org/) and specifically the lack of research in non-surgical approaches. There is a study just recruiting in Poland:

    http://www.clinicaltrials.gov/ct2/sh...liosis&rank=15

    that will look into the long term impact of physiotherapy--it's a nil hypothesis, though, so I don't think they are particularly hopeful. Still, I don't see anyone being serious, in any way, about non-surgical treatments in the US. It makes me sad because the US studies seem to be tied to ways that doctors and companies make money.
    Aterry, how are you? is allways nice to talk with you! Itís difficult to not feel frustration about what is happening with the scoliosis. Very interesting that page of researchers.. of course there are very much information according with what you are saying http://articles.sfgate.com/2011-06-2...n-protein-bone.
    But regrdless the motivation that lead to this situation, itís a fact that if you are not trying to move for a best paradigm, you are absolutly limitated for ever.
    The situation is really depressing. People with really great ideas and knowledge and the the intention of doing someting different, have not so much resources, but even that, some of them arrived to something good. But for obtain money it must to be different of other inventions. So may be that even they know that the invention would be much efective taking into account another principles of the competence, they prefer to invent something less effective but rentable. So, now we have some methods extremly differents. What could happen if the people with all the resources of any kind to reach a really very high effective solution, without bussiness in mind, decides to take the best of all this ideas and theories? But instead of doing that they stay away, such as looking what may happens and saying that nothing of that works.
    They also say they continue looking for a vaccine and remains with the same kind of solution they invented a century ago
    It's something like if people dedicated to give the best solution about transport, say that is impossible to fly, but not be worry because they are close to discover the teletransportation.. in the meantime, they are improving the ships they invented some centuries ago that of course, they must be done .. of wood!
    What a wonderfull world!

  14. #29
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    What's fair to say and what not

    I think it is fair to say that only some orthopedic surgeons appear to be working on new techniques, some of which involve non-fusion approaches.

    So the question becomes why not all of them all the time.

    It's an interesting question. Maybe Linda has a feel for why this is.

    In the meantime, many answers to this question have been thrown out there by angry parents. Surgeons have been thrown under the bus at various times for being either stupid or evil. Just because you don't write "stupid" or "evil" doesn't mean your argument can't be reduced to that.

    Claims that surgeons aren't working on better non-fusion techniques because that would reduce their compensation are completely beyond the pale. This is a claim that they could come up with a better mouse trap but refuse to do so and drag their feet deliberately because they would make less money. This is the "surgeons are evil" argument.

    This is also an argument based on ignorance. I suggest most orthopedic surgeons are not doing mostly AIS cases. Maybe there is no surgeon that does ONLY AIS cases within spine. And I further suggest every one of these guys would like to go into the history books as obviating fusion for AIS. And get the Nobel en route.

    If surgeons have ideas for new non-fusion techniques, I imagine they have to try them out on other animals besides humans first. This is a considerable amount of time away from the clinic that is probably not doable absent having a part time research appointment but I don't know that. And then there are hoops to jump through if/when they move on to humans. The techniques are experimental and insurance won't pay the hospital as a general rule. So the barriers to research in this area are lack of time to do the research, lack of money to do the research, and administrative rules to protect folks from unproven treatments.

    This is a much more likely explanation than surgeons are evil or stupid in my opinion.

    The only answers are those supported by evidence. Venting counterfactual material like in the original post doesn't help unless you are bathed, 24/7 in counterfactual material and have lost the ability to recognize it as such. Then it becomes a ritual speaking in tongues I guess.
    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."

  15. #30
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    Quote Originally Posted by Pooka1 View Post
    Fer, you can't say the same about me because I am not criticizing the surgeons.
    There are many different kinds of verbal attacks. Not all of them should to suggest lack of honesty or intelligence.
    You said in other words, that my feelings because a sad situation clouding my reason led me now to criticize the medical community (or health system or the name you want)
    It could be seen as an a priori rational explanation, not suggesting in fact dishonesty or stupidity or something like that.
    If I want I may give the same kind of explanation about why, because the same reason, you defend that community instead of criticize it.
    Those kinds of arguments are what I interpret like a clear and unnecessary attack. More precisely a low blow.
    Quote Originally Posted by Pooka1 View Post
    I completely agree with debating ANYTHING. EVERYTHING is on the table including things that carry a social taboo which I won't name. Medicine has plenty of problems left to solve.
    It think it have not any sense, debates in this kind of forum. It is supposed all of us belong to same side. When people debate, they want to win. I have not interest in wining a discussion here. But anyway, if there is no other way to interchange ideas (that is what I want) about the serious problem affecting our life (maybe you not feel that) in this forum, maybe I could be interested in such kind of fights, but following rules. I love martial arts, but I only fight in the street if I have not other alternative, I try to avoid such situations, so I not see so much sense in participating in this forum. But as I said you, MAYBE that is what you and your friend (the moderator) are looking for. That is what I was referring when I said that if it is the case, both of you are doing an excellent work. I’m NOT saying it’s true, but is what it seems to be.

    Quote Originally Posted by Pooka1 View Post
    If EDF worked, every surgeon would be recommending it like they now recommend bracing which has a very spotty track record and yet they still put so many kids in braces. And bracing is a much harder treatment than PT.
    Maybe it needed to be combined with something else or some significant improvement.

    Quote Originally Posted by Pooka1 View Post

    I am not attacking you. I don't understand your argument if you say it doesn't involve criticizing the surgeons. There are probably not a million ways to think about non-fusion surgical stabilization of scoliosis. I don't think the problem is a failure of imagination but I have no idea.
    Sharon, maybe we have different ideas about what means an attack.
    That may be related too, with the fact that I not think I’m criticizing surgeons.
    An organization is different to people. It is composed by them but is not the same. We live in a client/server system. Surely all of us, criticize some organizations but it not means that we criticizing all the people belonging to it. I have not idea how works the medical community. Surely they have priorities as all organizations. What I really think is that they have other priorities and the perception they have about the scoliosis solution (really wrong in my opinion) is enough acceptable, so even they could do something really much better, they think it’s more adequate to improve the solutions of other problems.

    Quote Originally Posted by Pooka1 View Post

    I am not attacking you, Fer. I like you.
    I like you too Sharon.
    Last edited by flerc; 07-06-2011 at 12:27 PM.

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