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  • #61
    Sharon, I’ll return to my PC within some hours..I appreciate what you are saying and I'll do some comments of course.

    Fer

    Comment


    • #62
      Originally posted by flerc View Post
      There are 2 contradictory assumptions here: 1) Surgeons are the only guys with knowledge about scoliosis, other professionals has not idea 2) As surgeons have never seen evidence, they are sure that non surgical treatments could not work.
      As the only one evidence that they could see, became from ignorants, because surgeons never tried anything, NASA Scientists could have said that is impossible to go to the moon because they never saw any evidence.. only failed attempts of students of some school.
      No surgeons are NOT sure things like bracing and PT can't work. I am not sure bracing and PT can't work although it isn't looking good. If I was in this area of research I would try something completely different at this point given the data in hand if I wanted to have a career in that field.

      Scientists would NEVER say it was impossible to go to the moon. Nobody ever proved we couldn't go to the moon. Obviously not. There is no law of physics that had to be broken to go to the moon. Obviously not. This is the same error people make when they say that people "knew" the earth was flat and were wrong. Well nobody ever proved the earth was flat. Obviously not.

      In contrast we have certain alternative treatments like modified handheld jigsaws and vibrating chairs and praying and such which are NON-scientific and therefore not legitimate subjects of study by serious researchers. It isn't necessary to disprove them when enough biological knowledge and other data is already in hand to ignore them.

      So the situation with going to the moon and alternative scoliosis treatment is completely apples and oranges. Going to the moon is scientific (breaks no physical or biological laws) and alternative treatments are largely if not completely NON-scientific (contradict known facts of biology). Do you see that difference? There is no analogy to make whatsoever.
      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."

      Comment


      • #63
        Originally posted by hdugger
        Surgeons are only experts (and appear to recommend) only the specific surgery techniques that they are skilled in. So, not only are they limited to surgical solutions - they're limited to the surgical solutions that they offer. If a surgeon doesn't do minimally invasive or hasn't tried vertebral stapling, you're unlikely to hear about even these surgical options from them.

        That doesn't make them evil - it just makes them human. But it does mean that the onus is on the patient to figure out what other options might be available.
        Yes, maybe not exactly in these words, but they says: I only have this kind of solution for you, take it or leave it, is your problem not mine.

        Comment


        • #64
          Originally posted by Pooka1 View Post
          OKay Fer, I think I see the problem.

          Linda will correct me if I'm wrong but I don't think most surgeons are doing research on non-fusion treatments (this includes non-fusion surgical and non-surgical). Only some seem to be doing any research at all.

          And the reason I don't think they are doing research on new treatments is because that is not what they were hired to do in most cases. I do NOT think most surgical positions, even at teaching hospitals, are even in part research positions. I think they are clinical positions. They are serving the community. I could be wrong.

          But some do research and publish, some EXTENSIVELY. Lenke must have over 1,000 publications including coauthorship. Unless there is a complete overlap between the clinical cases and the published research which is often the case, they must be "buying out" some of their clinical time with research grants. It seems like it would be very hard to do research "on the side" if you were hired to do just clinical. The time required to write research proposal, administer grants, collect data, and write up the results would cut too far into the clinical time in my opinion.

          I am guessing the types of research these guys do falls into one of a few categories:

          1. straight crunching of clinical data
          2. publishing trials of new surgical approaches
          3. publishing trials of conservative approaches (bracing and PT)

          It seems the bulk of the pubs I have seen fall into #1. Less fall into #2. Only a literal handful of surgeons are working on studies in #3 although some PhDs are working in this category, notably Dr. McIntire.

          The reason category #3 is largely limited to bracing and PT is because there is some scant evidence for those things and because they are not non-scientific. Alternative treatments tend to be non-scientific like raindrop therapy, little hand-held massager thingies, vibrating chairs, etc. etc. These things are not expected to be effective so it would be HIGHLY unethical for a surgeon to study them.

          I think the issue that parents have here is they wish all or most of the research would be in category #3 which at this point is mostly on speculation. In the mean time, the most needy folks, those who need surgery, are marginalized. Surgeons won't do that nor is it ethical and would constitute a breach of their Hippocratic oath.
          Sharon I think we may say that nobody are trying to solve the scoliosis problem in a really best way inside the medical community. There are really so few individuals attemps within it, even less with surgeons involved. A Project without sponsors, without a leader.. is not a Project. And something so complex as scoliosis is..
          I’m really not sure that surgeons don’t have time to investigate and publish papers about alternative methods. In fact I have seen time ago some much of them trying to show that those methods don´t works and what they do is the best. But regardless why surgeons seems to be so unproductive in that way, we may agree that is an organization problem the worst of all. Of course could be say that surgeons not seems to be very much interested even in improving what they do as trying no fusion surgery would be. But how could it be that nobody within the medical community or the organization controlling it (if exists one) are not saying to all doctors of all specialities that a best solution must to be achieved in a relatively short time? Someone should to say to that people: It’s not something logic to continues giving to that people a solution of a century ago. You should to improve the current solution at least in a y % in x time. Precise métrics could be defined for that. If they have not idea about how to lead projects, they should to call to people who knows.

          It seems to be obvious that the Project should not be leadered by a surgeon. I don’t know if they are who have the greatest knowledge related to scoliosis, maybe but it’s not really a requirement for a leader. If surgeons think in fact that non surgical methods have not scientific bases or they have not time because they are needed to do surgerys, well they may surely contribute in some way to the professionals of that Project. They surely are necessary for non fusion surgerys, but for non surgical methods, without any doubt, other professional could do a good work.
          It’s a fact that they cannot say that all non surgical methods are not following scientific principles, so they may have not any excuse.. but to be more ordered, I’ll come over this issue in the ‘Nasa post’.

          Comment


          • #65
            Fer,

            I understand what you are saying.

            The only people trained to do research in scoliosis treatment, surgical and conservative, are the surgeons and certain PhDs. The PhDs are paid to do research (and teach) but I am not so sure what is going on with the surgeons. My best guess is some might be expected to get grants and do research some of the time. Or they choose to do that. I do know some publish A LOT. SRSLY. These same guys have active clinical practices. It blows my mind. They must be buying out some clinical time to do it.

            As for alternative methods, can you list ones that are scientific? I don't know of any. I do not think surgeons should be investigating non-scientific treatments. I am NOT talking about bracing and PT which are considered "conservative" NOT alternative as far as I know.

            Recuerdos,
            s
            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."

            Comment


            • #66
              Originally posted by hdugger
              I used to run into this problem when I was working with researchers - the researcher always felt that the only way to look at a problem was through their particular prism. So, I was working with biological psychologists. If I talked to them about something like, say, Alzheimer's or brain injury, the were only interested in what biological psychology had to say about it. There was not a single expert who focused on the disease itself, there were just all these different specialists looking at it through their one little prism.

              It's the same thing with scoliosis. There isn't a generalist who deals with scoliosis, there are just all of these specialists who look at it through their skill set. Surgeons want to operate, geneticists want to test for genetics, physical therapists want to give exercise, etc. There's noone who is actually looking at the disorder itself and trying to see a unified big picture. At least, noone that I'm aware of. Other, you know, from patients and parents.
              Hudger, that is exactly what I ever say. Nobody is trying in fact to solve the problem! Or they have not idea about Problem Solving. And the same ocurrs with many alternative methods. All are tied to some specific paradigm! Scoliosis is just enough complex by itself.. and what we may do by ourselves?

              Comment


              • #67
                72 clinical research studies

                listed for scoliosis in various stages of progress...

                http://clinicaltrials.gov/ct2/results?term=scoliosis

                Not all listed studies are trialing actual treatment modalities.
                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."

                Comment


                • #68
                  By the way, trial #58 is actually investigating an aspect of germ theory (!) as it might relate to scoliosis but the cause-effect has not been established. Could be folks with that genetic makeup are also susceptible to that bacterial infection. They are not claiming the infection causes scoliosis.
                  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."

                  Comment


                  • #69
                    Originally posted by Pooka1 View Post
                    Fer,

                    I understand what you are saying.

                    The only people trained to do research in scoliosis treatment, surgical and conservative, are the surgeons and certain PhDs. The PhDs are paid to do research (and teach) but I am not so sure what is going on with the surgeons. My best guess is some might be expected to get grants and do research some of the time. Or they choose to do that. I do know some publish A LOT. SRSLY. These same guys have active clinical practices. It blows my mind. They must be buying out some clinical time to do it.

                    As for alternative methods, can you list ones that are scientific? I don't know of any. I do not think surgeons should be investigating non-scientific treatments. I am NOT talking about bracing and PT which are considered "conservative" NOT alternative as far as I know.

                    Recuerdos,
                    s
                    Yes Sharon. I cannot believe that surgeons refers as non surgical methods only raindrop therapy, little hand-held massager or so on.
                    We may say that methods implement theories based over some principles. It's understandable that investigate a method not based over some principles that not seem to be so related with the scoliosis problem and there is not some evidence that work, may be considered a waste of time. Even also if that principles, despite would be so much related with the problem, the method or theory behind it, is out the scope of the western science as in some way could be say about Qui Gong.
                    Also if the principles are related with the problem to solve, but the theory not look very much convincing as seems to be with raindrop therapy (I suppose). It’s reasonable in all these cases that evidence should be required. But only in those cases.

                    So, if the scientific principle/s supporting a reasonable theory are related with the scoliosis problem, and the method seems to be a reasonable way to implement that theory, the method should to be considered.
                    That is what happens without any doubts with a method as Fed http://www.sastre-roca.com/metodofed.html It can not be considered as a PT method even is in fact a methodology that include PT and probably brace too. The research of the scoliosis vicious cycle, was previous to that invention and we can say that is what is attacked by this method. Sastre has made by her own (I think that not receiving one dollar from medical community) scientist research, also with animals, the theory behind this method is really consistent and extremely logic. The relevant assumptions (principles) were identified and conclusions (theory) were reached following right reasoning. And the method seems to be a right way to implement that theory. And it seems it works! http://www.sastre-roca.com/casospracticos.html But of course the last is not relevant to being considered a scientific method that should to be taken into account.

                    Vojta, ABR and also Rpg and others Meizierist’s therapies http://es.wikipedia.org/wiki/M%C3%A9...%A9zi%C3%A8res (sorry is in Spanish but I sure you like to read the Observation prínceps) based over scientist principles too, probably could be considered as belonging to PT, but the theory is really different. Meizierist’s therapies theory could be seen as opposite in at least some points to traditional PT. Abr http://blyum.typepad.com/on_abr_and_...lustrated.html is the invention of a mathematician with a thesis in Biomechanical, and the theory takes into account the concept of tensegrity, that is used by ostheopats (but probably discovered in biology by a surgeon). In fact Rpg and others more are also taking into account something like tensegrity (when focus is over fascias) and biomechanical, but ABR is the only one method or discipline in the western world focusing in smooth muscles. I not agree that should to be considered a non scientific methods because is taking into account concepts never investigated by the medical community.

                    Saludos, continuaré en un momento

                    Comment


                    • #70
                      Fer,

                      I think only Dr. McIntire can say if those are scientific.

                      They all appear to be either PT or massage. The PT might be conservative and not alternative but the massage seems alternative.

                      Some of these approaches seem to be physically holding the spine in a straighter position for short period of time. I would like to hear a credible hypothesis for how any of that could possibly address scoliosis when even hard bracing, which holds the spine straighter for longer, fails.

                      And I don't think this has to be one's field to suggest that massaging fascia could possibly affect scoliosis either way. But what do I know?

                      We need to see evidence of long-term efficacy that is not dependent on constant exercise that beats natural history. The fact that Schroth has been at it for over 90 years and still hasn't ponied up evidence despite having a HUGE patient population and a credible researcher at the helm for years constitutes some evidence that PT like that at least will likely be ineffective. And the fact that the SEAS folks seem to have exactly ONE patient who got a significant amount of (heavy, long exercise-dependent) straightening out of all the people who tried doesn't bode well either for PT. Finally, Torso rotation only has a handful of people (35) and only a fraction of those were in the growth spurt apparently.
                      Last edited by Pooka1; 07-15-2011, 07:55 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."

                      Comment


                      • #71
                        I’m almost sure that I talked with Dr. McIntire about the scoliosis vicious cycle in some post, but anyway, sure he know about that scientific principle based over the Hueter-Volkmann law.

                        None of this methods has anything to do with massages. Changes in fascias may be done by other procedures. I think ABR is which is more focused in fascias and the procedure consist in pressures (following scientific laws), that could not be named as massages. I know others western therapies using (not only) massages but are not those.
                        Maybe I’m understanding something different by PT but I interpret it, as something much similar to the traditional physiotherapy, focused in strengthen muscles. None of those methods have to do with those practices.
                        But if we interpret PT as someone touching the body of a pacient, or the pacient doing exercises by herself.. which other could be the procedure of an alternative method? Only devices as braces or Spinecor or machines as Fed or Torso Rotation? Maybe radiaton as magnet theraphy?

                        Fed not only consists exactly or precisely in holding the spine, is not the most important of the procedure. The scoliosis vicious cycle is a scientific conclusion, we may say a fact, about one of the current causes of the scoliosis problem. Instead of looking only about the original cause at it seems are doing researchers, some people are focused in the current causes. If all those causes could be eliminated, then the problem would be solved, even if we never know anything about the original cause. I saw an article of Pub Med (not about Fed) some years ago criticizing the watch and wait, explaning very well the scoliosis vicious cycle. The theory behind Fed, is extremely logical.. the effect of scoliosis vicious cycle is done by a pressure of gravity force in some way, so a greater force in an opposite way would compense that effect and even reverse it. That is an extreme simplification, maybe not right at all. It was proved in animals. Nobody could say that is not the outcome of a scientific theory and a coherent method to apply it. May exists others better? Maybe, in fact are many other methods based over that principle, but those concepts should to be taken in mind by all trying a non surgical method. If a surgeon says that Fed is not a scientific method, well.. the ‘evil argument’ will be the reason without any doubt. They are not scientists, but some idea about what science means must to have of course.

                        Comment


                        • #72
                          Originally posted by flerc View Post
                          None of this methods has anything to do with massages. Changes in fascias may be done by other procedures. I think ABR is which is more focused in fascias and the procedure consist in pressures (following scientific laws), that could not be named as massages. I know others western therapies using (not only) massages but are not those.
                          Intermittent pressure is massage as far as I know. How can putting pressure on fascia conceivably change the Cobb angle? This sounds profoundly non-scientific. Hopefully Dr. McIntire will comment.

                          Maybe I’m understanding something different by PT but I interpret it, as something much similar to the traditional physiotherapy, focused in strengthen muscles. None of those methods have to do with those practices.
                          But if we interpret PT as someone touching the body of a patient, or the patient doing exercises by herself.. which other could be the procedure of an alternative method? Only devices as braces or Spinecor or machines as Fed or Torso Rotation? Maybe radiation as magnet therapy?
                          I don't know the technical definition of PT. I don't even know if there is an agreed upon definition. This is completely outside my field. I am just saying I looked at those web sites and they appear to be PT (or massage).

                          I am not aware of evidence for magnet therapy though a lot of folks in the horse world have fallen for it. It is listed on the periodic table of irrational nonsense (Element 101)... here is the Spanish version for your reading pleasure...

                          http://4.bp.blogspot.com/_RQjQvxtmK8...e+v1.1a+SP.png

                          Radiation therapy sounds dangerous.

                          (snip)The theory behind Fed, is extremely logical.. the effect of scoliosis vicious cycle is done by a pressure of gravity force in some way, so a greater force in an opposite way would compensate that effect and even reverse it. That is an extreme simplification, maybe not right at all. It was proved in animals. Nobody could say that is not the outcome of a scientific theory and a coherent method to apply it. May exists others better? Maybe, in fact are many other methods based over that principle, but those concepts should to be taken in mind by all trying a non surgical method. If a surgeon says that Fed is not a scientific method, well.. the ‘evil argument’ will be the reason without any doubt. They are not scientists, but some idea about what science means must to have of course.
                          Opposing the curve is the idea behind bracing. PT seems to be just less time spent opposing the curve. Or it is building up muscle to do what braces do. It seems like if hard braces fail then PT doesn't stand a chance. But I would welcome any dope-slapping from Dr. McIntire on this point as this is his field.

                          Note I'm addressing what appears to be actually happening as opposed to believing any claims from these alternative treatment purveyors. They can claim anything they like but until they show empirical evidence of efficacy or show they really are addressing some biological problem then I remain skeptical.
                          Last edited by Pooka1; 07-15-2011, 09:48 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."

                          Comment


                          • #73
                            Originally posted by Pooka1 View Post
                            Intermittent pressure is massage as far as I know. .
                            I’m not an expert in PT definition but I know that at least so much PT proffesionals interpret massages as something different. Even, I know that ABR pressures may be done by a specific machine.

                            Originally posted by Pooka1 View Post
                            How can putting pressure on fascia conceivably change the Cobb angle? This sounds profoundly non-scientific. Hopefully Dr. McIntire will comment.
                            Of course much things could sounds non-scientific for someone without the enough knowledge. I also have not it.

                            Originally posted by Pooka1 View Post
                            I don't know the technical definition of PT. I don't even know if there is an agreed upon definition. This is completely outside my field. I am just saying I looked at those web sites and they appear to be PT (or massage).

                            I am not aware of evidence for magnet therapy though a lot of folks in the horse world have fallen for it. It is listed on the periodic table of irrational nonsense (Element 101)... here is the Spanish version for your reading pleasure...

                            http://4.bp.blogspot.com/_RQjQvxtmK8...e+v1.1a+SP.png

                            Radiation therapy sounds dangerous.
                            I was referring that if surgeons consider PT and devices as conservative methods, and they only accept to evaluate other methods, what could be considered an alternative method? PT is an extremely vast world.
                            I personally know parents that refused to follow the advice of doctors when they said them that they should to forget their sons, because ‘science’ may not do anything for them. I was present in 'conferences' and I have seen the photos showing improvements in kids with CP that also was there with their parents, that found something like ABR and her sons are still alive and improving even best that someone may expect in a diagnosed fatal case.

                            Originally posted by Pooka1 View Post

                            Opposing the curve is the idea behind bracing. PT seems to be just less time spent opposing the curve. Or it is building up muscle to do what braces do. It seems like if hard braces fail then PT doesn't stand a chance. But I would welcome any dope-slapping from Dr. McIntire on this point as this is his field.

                            Rigid brace without stretching before the spine, imply an external force not very well used, and strengtheners muscles oriented techniques, as I talked in an extended post with Dr. McIntire, should to be used in an extremely right way and not all PT methods are oriented in this way, but anyway, what are medical community waiting to see, to became to do some attemting to get a best solution for scoliosis problem? That other people find the perfect solution for scoliosis? We are returning to the ‘Nasa argument’. If we are assuming there are not evidence that such kind of methods taking into account scientific facts may work, then we’ll should not assume that surgeons are not the only ones with a great knowledge.. we may also assume that only knows about surgery and the evil argument too.

                            Originally posted by Pooka1 View Post

                            Note I'm addressing what appears to be actually happening as opposed to believing any claims from these alternative treatment purveyors. They can claim anything they like but until they show empirical evidence of efficacy or show they really are addressing some biological problem then I remain skeptical.
                            Sharon, you could remains skeptical as all of us, but it not could be an excuse for people that may do something to give a better solution. I think that the actual problem is extremely much complex.
                            That treatment purveyors have nothing to do with much facts (as it seems to be), such as Surgeons claiming to be the only ones with knowledge and expertise to treat the scoliosis problem and they are assuming that only surgery (their job) may works. THEY are who should to show the evidence about what they says. I not believe in what someone may say, if it is pro their personal interest, or saying in other words, it could never be a proof for me.
                            And we may say that there are so much other negative facts too.
                            Last edited by flerc; 07-15-2011, 01:40 PM.

                            Comment


                            • #74
                              Treatment for Idiopathic Scoliosis

                              Hello everyone.
                              I accessed this forum through "Flerc" which kindly encouraged me to express my opinion in this thread.
                              Let me first introduce myself: my name is Manuel M. and I am the executive secretary/director of the "Chiari & Scoliosis & Syringomyelia Foundation."

                              After carefully reading the comments about Scoliosis posted in this forum, which, by the way, are very similar to those expressed in forums from other countries, I cannot help but at your disposal medical and scientific information which can benefit all concerned, not only those suffering from Scoliosis but also those having Arnold Chiari I Syndrome, Syringomyelia and other diseases caused by Spinal Cord Traction.

                              The majority of treatments offered and performed, are generally intended to mitigate the effects of Scoliosis and sometimes solve problems due to it and all the other diseases mentioned. In many cases, however, after a while we observe that discomfort and most of the symptoms return since the cause of the actual pathology has not yet been identified nor eliminated and thus the disease can progress.

                              The cause of Idiopathic Scoliosis is none other than the traction of the filum terminale, as has been shown and demonstrated by Dr. Miguel Bta. Royo Salvador, after 36 years dedicated to the research and the treatment of these disorders. He and his medical team, perform a minimally invasive surgery by section the filum terminale, which is less risky than surgery for appendicitis or a tooth extraction.

                              Since August 2004, when Dr. Royo met Dr. Milhorat exchanging scientific and medical opinions on the treatment of the filum terminale, this surgical procedure has also been performed by the Chiari Institute of New York.

                              Another aspect to be addressed regards the sequels these diseases may leave. This means that after eliminating the cause of Idiopathic Scoliosis via filum terminale surgery the patient may require remedial gymnastics, a corset, surgical insertion of plates to increase vertebral stability or other solutions that experts consider useful for improving patients’ quality of life, once the cause is removed.

                              For more detailed and scientifically documented information you may access, without commitment, the "Chiari & Syringomyelia & Scoliosis Institut de Barcelona" website (www.institutchiaribcn.com), where in the Testimonials section you can read, compare and identify as your own, different symptoms and experiences of patients who could solve some of the problems arisen from these diseases.

                              Being my first comment in this forum, I do not want to elaborate more, however, I remain available to anyone who should want me to provide more information through the Chiari Foundation www.chiarifoundationbcn.com .

                              Comment


                              • #75
                                @ manuel miguel

                                Has the Nobel committee been informed that the cause of idiopathic scoliosis has been discovered? If not, why not?

                                Can you post all the research paper references proving this?

                                Why are researchers studying MANY other possible causes if the one cause has been determined? Are they idiots?
                                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."

                                Comment

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