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Changes in scoliosis treatment due to Scoliscore

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  • Research

    We live in a free economy and most research is driven by business principles.
    The only other funding possibilities are private foundations and gov't grants.
    Cutting gov't spending would reduce the latter; private fund raising would help the former. Certain groups have banded together to raise funds to cure certain diseases examples: cystic fibrosis, lupus foundation, leukemia/lymphoma etc.
    The fund raisers must be paid by the donations. In a tight economy fewer donations are forthcoming.
    Does anyone else know of another research possibility I may have missed?
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

    Comment


    • I know so few about that, but I think a recompense system should to exist. Governments and also scoliosis Foundations, should to do a promise of a fortune to anyone who can find an effective solution for scoliosis problem. Of course, what ‘scoliosis problem’ means and what ‘an effective solution’ means should to be defined in a right way. But it would be something possible to do for someone knowing about Project Management and Problem Solving Theory.

      Comment


      • Why we are not doing that?

        Originally posted by flerc View Post
        I think a recompense system should to exist. Governments and also scoliosis Foundations, should to do a promise of a fortune to anyone who can find an effective solution for scoliosis problem.
        And what about us? I'm certainly so far to be a rich man, but I would pay really many thousand dollars to anyone who 'cure' the scoliosis of my daughter. I know many people that would do the same, and not all of them are parents. How many millon dollars could we promise all together?

        Comment


        • Why not?

          We should to know how many we are and make an estimation about the amount of money for each one of us. Then we should to publish it like a call for tender (it's not too difficult to do that).
          As in the Wild West times, if the Sheriff, nothing may do, we should to trust in bounty hunters.
          Scoliosis is hard to kill.

          Comment


          • I've been working my way through this thread over the last couple of weeks, when I have time. I think it's been a really good discussion so far. I'm going to try to remember the couple of things I wanted to comment on specifically.

            First - the primary cost of any study will most likely go towards salary and/or non-research related expenses, e.g. administrative costs. For example, if I submitted an NIH grant I would include an itemized budget called "direct costs". Then, the university or organization through which I would submit this grant would add their administrative costs onto that called "in-direct costs". In-directs are usually at least 50% of the directs. Or another way to look at it, the University will add 50+% of the requested budget to the total. So if my grant costs $100k the University will add at least another $50k to that. I think Stanford routinely adds close to 80% and I know there are some other Ivy league schools that add 110% of the grant. So depending on how much of the grant budget is salary, e.g. grad student, postdoc or PI, another huge chunk will go to the institution and that's before one data point is even collected. I'm not sure how that works if there is a small award or grant from a foundation for a set amount, e.g. $20k awarded to a postdoc for a specific project.

            The exception to this, I think, are internal studies by clinicians or funded by clinical departments.

            Second - I don't personally think that MD's in the AIS world are intentionally leaving PT behind. If there is a better treatment, the MD's will use it. At this point, with my admittedly limited experience, there is nothing to suggest anything different. The surgeons with which I worked did not like operating on kids. Also, they were slammed with plenty of other surgeries. So if a PT or brace company or anything else came out with a way to let these docs avoid cutting on an adolescent, they'll do it and probably wouldn't loose that much income. But again, I don't think money is the reason they are operating on them in the first place.

            That being said, I know there are other parts of the medical world where less intervention is actually a good thing, is proven safer and cheaper, yet the AMA and insurance companies won't support or cover it. This is in the area of child birth and the use of mid-wives in a hospital setting or in another non-hospital setting, i.e. birthing center or home birth. Under low risk, well supported pregnancies, mid-wives are fully capable. In fact, other countries use mid-wives and home births almost exclusively, again, for healthy pregnancies, and have way better birth stats than the US. Fewer 'emergent' c-sections, less costs, shorter or zero hospital stays, etc... But if ob-gyns were only overseeing the higher-risk pregnancies, that would clearly eat into their patient base considering the vast majority of births in the US are healthy. Some clinics do use a mid-wife and insurance will also cover it. But this is not the norm and you have to really look for these clinics.

            At any rate, corporate money definitely influences research directions. However, I don't see it as a conspiracy or intentional omission of PT. It's simply a matter of what type of company it is. A drug company has no interest in sponsoring a PT study. A PT company or organization certainly would have that interest. So the APTA (Am. PT Assoc) should sponsor something. Or some other PT company, e.g. Physiotherapy Associates, should sponsor something. But those companies/organizations would also be driven by cost as well. Do they think it would increase patient flow if they invested in this study? Is there enough evidence to warrant that investment such that they could be reasonably assured of the result?

            I think you all have hit on a lot of these basic points, but just wanted to add my two cents.

            Third - Regarding PT having thousands of years to work on it. I would have to rebut by saying we know almost infinitely more about muscle physiology and motor learning than our ancestors did. And certainly, the studies in the early to mid 20th century, couldn't really be considered 'exercise' or 'PT' studies. These consisted of calisthenic types of exercises. They were not strengthening in nature and were in no way focused on the curve specifically, other than being based on trunk movements. This is a minor point and I'm certainly biased.

            Fourth - how does the grass-roots based organization that you all have discussed differ from the NSF? Or the IRSSD? or SOSORT? These organizations are already established and are focused on bringing together the information you have suggested. Perhaps having more patient/family representation at these meetings would be advantageous. In fact, I could see a real benefit of having a strong patient-focused group present at these meetings. Not that the researchers aren't patient-focused, but I think you get what I'm saying. Maybe this already exists for these groups though. ???

            Fifth- I'm sure there were other things but can't remember them now. I might scan back through and see if I can see anything else.

            Comment


            • Originally posted by hdugger
              And the key distinction is that the syrinx ones are run by patients, while the scoliosis ones are run by medical professionals.
              How we may do the same?

              Comment


              • Originally posted by skevimc View Post
                I think Stanford routinely adds close to 80% and I know there are some other Ivy league schools that add 110% of the grant.
                Thanks for this info. I am going to mention these points every time I hear bellyaching about my agency's supposedly high overhead rate. Geez.

                Third - Regarding PT having thousands of years to work on it. I would have to rebut by saying we know almost infinitely more about muscle physiology and motor learning than our ancestors did. And certainly, the studies in the early to mid 20th century, couldn't really be considered 'exercise' or 'PT' studies. These consisted of calisthenic types of exercises. They were not strengthening in nature and were in no way focused on the curve specifically, other than being based on trunk movements. This is a minor point and I'm certainly biased.
                Okay I take that point. But nothing developed after the scientific method was developed a few hundred years ago gets a pass. Schroth was developed by a lay person only less that ~90 years ago but there was an experienced, published surgeon at the helm much more recently for at least 10 years when some 30K patients were in the tretment and there is still nothing to show for it in terms of avoiding surgery. SEAS may have trained folks who developed it, I don't know. All the chiro approaches are lay treatments.
                Last edited by Pooka1; 08-19-2011, 10:35 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."

                Comment


                • Originally posted by Pooka1 View Post
                  All the chiro approaches are lay treatments.
                  Chiropractics should to have a great knowledge about the spine to get excelent outcomes in cases where surgery is the only option for surgeons as I know they have.

                  Originally posted by Pooka1 View Post
                  Okay I take that point. But nothing developed after the scientific method was developed a few hundred years ago gets a pass. Schroth was developed by a lay person only less that ~90 years ago but there was an experienced, published surgeon at the helm much more recently for at least 10 years when some 30K patients were in the tretment and there is still nothing to show for it in terms of avoiding surgery. SEAS may have trained folks who developed it, I don't know.
                  Someone had proven that nobody avoided surgery with Schroth treatment?
                  Katherina Schroth was a girl that had a great idea about a correction throught breathing but then, much physiotherapy knowledge was added to the method. At least part of it is the outcome of logical conclusions based upon scientist facts. As I said before, the same occurs with other methods and there is enough evidence about the possibilities of non surgical methods and there is not excuse for medical community to ignore it and to be only interested in the centennial fusion.

                  Comment


                  • Originally posted by flerc View Post
                    Chiropractics should to have a great knowledge about the spine to get excelent outcomes in cases where surgery is the only option for surgeons as I know they have.
                    Chiros have no relevant training to treat scoliosis progression which is an orthopedic problem and therefore within medicine. Chiro is based on ¨subluxations¨that have been shown to be imaginary. CLEAR does not appear to be based on subluxations to their great credit but there is no evidene that what they are developing is any less imaginary. Chiro, like all massage, can potentially help with pain as far as I know. There is no evidence it has helped a single person avoid surgery as far as I know. Please post otherwise if there is evidence.

                    Someone had proven that nobody avoided surgery with Schroth treatment?
                    In a sense, yes. The closet thing would be Weiss who admitted PT was still an open question as of last year or the year before in terms of letting people aviod surgery. Honest. He is obliged to be honest because he is a surgeon and took an oath.

                    Schroth was being investigated scientifically only when Weiss was at the helm as far as I know. The rest are lay people until proven otherwise. The only other scientific passes at PT to avoid fusion are the studies by PhD researchers like Dr. McIntire. I am not sure if the SEAS people have any relevant training or not. Chiro is not a science. Vibrating chairs, handheld modified jigsaws, raindrops, little massagers like TAMARS, etc. are not scientific.

                    Katherina Schroth was a girl that had a great idea about a correction throught breathing but then, much physiotherapy knowledge was added to the method. At least part of it is the outcome of logical conclusions based upon scientist facts. As I said before, the same occurs with other methods and there is enough evidence about the possibilities of non surgical methods and there is not excuse for medical community to ignore it and to be only interested in the centennial fusion.
                    Weiss himself is more sanguine that you are about the hope of PT as far as I can tell.
                    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


                    • Originally posted by Pooka1 View Post
                      Chiros have no relevant training to treat scoliosis progression which is an orthopedic problem and therefore within medicine. Chiro is based on ¨subluxations¨that have been shown to be imaginary. CLEAR does not appear to be based on subluxations to their great credit but there is no evidene that what they are developing is any less imaginary. Chiro, like all massage, can potentially help with pain as far as I know. There is no evidence it has helped a single person avoid surgery as far as I know. Please post otherwise if there is evidence.
                      Surely you know more than me about chiropractic, but is difficult for me to imagine that someone without a great knowledge, may help to avoid surgery in spine problems (not scoliosis) as I really know chiropractors did.
                      I have talked time ago with a mother of a daughter with a big curve, living in Panama and said that she had an incredible reduction with Clear treatment. Other 2 mothers said me about a stop of progression with traditional chiropractic, but they not told me about degrees.

                      Originally posted by Pooka1 View Post
                      In a sense, yes. The closet thing would be Weiss who admitted PT was still an open question as of last year or the year before in terms of letting people aviod surgery. Honest. He is obliged to be honest because he is a surgeon and took an oath.
                      Maybe I’m not understanding right. It means that he think that Schroth never helped nobody to avoid surgery?
                      Originally posted by Pooka1 View Post
                      Schroth was being investigated scientifically only when Weiss was at the helm as far as I know. The rest are lay people until proven otherwise. The only other scientific passes at PT to avoid fusion are the studies by PhD researchers like Dr. McIntire. I am not sure if the SEAS people have any relevant training or not. Chiro is not a science. Vibrating chairs, handheld modified jigsaws, raindrops, little massagers like TAMARS, etc. are not scientific.
                      I don’t know how much have to do Weiss with the method, if it changed so much after his participation, but I think that physiotherapist, had to do so much with it before.
                      As I said before in this thread, there are other logic methods based upon scientific facts and were not developed by surgeons. Anyway, I no doubt that surgeon may help in this way if they want. Spinecor is a great invention and it was developed by surgeons as I know.

                      Originally posted by Pooka1 View Post
                      Weiss himself is more sanguine that you are about the hope of PT as far as I can tell.
                      I don't understand why you say that.

                      Comment


                      • Originally posted by flerc View Post
                        Surely you know more than me about chiropractic,
                        We don't know that. I really don't know much about chiro other than what I've posted from knowledgeable sources (e.g., chiro is not a science, chiro subluxations are imaginary, etc. etc.).

                        but is difficult for me to imagine that someone without a great knowledge, may help to avoid surgery in spine problems (not scoliosis) as I really know chiropractors did.
                        I have talked time ago with a mother of a daughter with a big curve, living in Panama and said that she had an incredible reduction with Clear treatment. Other 2 mothers said me about a stop of progression with traditional chiropractic, but they not told me about degrees.
                        Personal testimonials from lay people are completely worthless. They are essentially studies with an "n" of one with no control and no relevant training to interpret any observation. People are commonly mistaken or lying. Only evidence matters.

                        Maybe I’m not understanding right. It means that he think that Schroth never helped nobody to avoid surgery?
                        I don't know the extent of what he admits. I can only go by what he publishes in the refereed literature. I suspect Schroth like any PT can help with pain. I am just saying he is not claiming PT has been shown to avoid surgery as far as I know.

                        I don’t know how much have to do Weiss with the method, if it changed so much after his participation, but I think that physiotherapist, had to do so much with it before.
                        As I said before in this thread, there are other logic methods based upon scientific facts and were not developed by surgeons. Anyway, I no doubt that surgeon may help in this way if they want. Spinecor is a great invention and it was developed by surgeons as I know.
                        If Spinecor is such a great invention, why are surgeons who prescribe bracing largely avoiding it in your opinion? Do you understand that there is no good evidence bracing, any bracing, works to avoid surgery for life? The bracing literature is largely a train wreck.
                        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


                        • Originally posted by Pooka1 View Post
                          We don't know that. I really don't know much about chiro other than what I've posted from knowledgeable sources (e.g., chiro is not a science, chiro subluxations are imaginary, etc. etc.).
                          Personal testimonials from lay people are completely worthless. They are essentially studies with an "n" of one with no control and no relevant training to interpret any observation. People are commonly mistaken or lying. Only evidence matters.
                          I know exactly what I talked with those mothers and specially with the mother treating her daughter with Clear and she had a perfect knowledge about what she was saying me, she gave me the outcomes of x-rays. The only one possibility is that they were liars. I don’t believe that, but of course I cannot demonstrate it
                          But I remember since I was a child the big problem that my mother had until a chiropractor solved it in one sesion. I know what surgeons was saying to her, so it has not sense for me what may say that people about Chiropraxy.

                          Originally posted by Pooka1 View Post
                          I don't know the extent of what he admits. I can only go by what he publishes in the refereed literature. I suspect Schroth like any PT can help with pain. I am just saying he is not claiming PT has been shown to avoid surgery as far as I know.
                          Please copy a link to that. It’s not the same to say that Schroth or some similar PT (PT is something extremly vast) is not the solution to avoid surgery (I agree, becouse maybe it could work only in a few percentage of cases) that say that never did that in just only one case.
                          Originally posted by Pooka1 View Post
                          If Spinecor is such a great invention, why are surgeons who prescribe bracing largely avoiding it in your opinion?
                          It's becouse the same reason they not recommend any other alternative method. I gave my opinion about why they does that, too many times in this thread.
                          Originally posted by Pooka1 View Post
                          Do you understand that there is no good evidence bracing, any bracing, works to avoid surgery for life. The bracing literature is largely a train wreck.?
                          Do you understand that Spinecor is not a brace? Do you understand the principles behind it?, but anyway, please, coy a link about EVIDENCE that NEVER a brace avoided a surgery.

                          But anyway we are going back again with the same discussion. I remeber you that I’m not saying that Spinecor, Chiropraxy, Clear, Schroth or traditional braces or any other method are the solution we are looking for scoliosis problem. I agree that all of current non surgical methods may work in a low percentage of cases. But what may happen if a multidisciplinary Project try to understand all theories and principles to create the best method?
                          Even I may agree that always would be cases in which only surgery may work, but I think there is enough evidence to believe that this method would may avoid surgery in a really acceptable percentage of cases. You don’t believe that. Of course you may believe that all that surgeons say is the exact and absolute true. It’s your belief, not mine, and I think I gave enough logic and consistent arguments about why. If you think the contrary, copy what I said and say me why.

                          Comment


                          • Originally posted by flerc View Post
                            Do you understand that Spinecor is not a brace?
                            El primer y único Corsé Correctivo Dinámico para el tratamiento de la Escoliosis Idiopática

                            http://www.spinecorporation.com/Spanish/index.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."

                            Comment


                            • Originally posted by Pooka1 View Post
                              El primer y único Corsé Correctivo Dinámico para el tratamiento de la Escoliosis Idiopática

                              http://www.spinecorporation.com/Spanish/index.htm
                              El tratamiento con SpineCor® es completamente diferente del concepto tradicional de los corsés rígidos, que utilizan 3 puntos de presión y distracción
                              http://emeritaneuro.blogspot.com/p/spinecor.html

                              As I know, 3 pressure points is the concept behind braces.

                              Comment


                              • Claims are not facts.

                                I accept facts based on evidence.

                                I withhold acceptance of claims until they pony up the evidence.

                                Notice there is no need for faith at any point in this process.

                                Spinecor can say anything they want but until they produce evidence it is all just word salad.
                                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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