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  • #16
    As ever gerbo you are the voice of reason. I enjoy reading your posts. I like you didn't think structural was actualy talking about anyone in paticular and was making a general statement about the lack of education about scoliosis and the skeletal system in his country. You are lucky though because in the UK the education system is worse. Having gone through numerous Drs over the years it took until i was 36 to learn that i suffered from Kyphosis. Now you could argue that its my own fault for not looking too deeply into my condition and if you did i couldn't argue with you because it is. But when you go to so called experts and they tell you there is nothing they can do for you, you just get on living your life. When i was diagnosed there was no altenative treatments, surgery was to my knowledge the only answer and i was told i was not a candidate.

    I think (going completly of topic) that screening programmes and education programmes are the answer. If a nurse had picked up my condition in school and there had been a process in place to refer me to a scoliosis/kyphosis specialist and not just a general orthopedic surgeon things may be different and i wouldn't be dragging this enormous lump on my back around. I have now come to terms with how i look but it has been a slow process. Coming to sites like this and finding i'm not the only one in the world who looks like me helped. I thought i was the only one and reading other peoples experiences has been very theraputic.

    peace

    z

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    • #17

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      • #18
        Zuma,

        Not sure I misunderstoond you. Do you know that Gerbo is in the UK?

        I know for a fact that some chiros claim they can decrease curves. That is why some people think they can.

        I love our chiros. They helped my husband with his back when traditional doctors couldn't. We go to them when something is out of place or causing us some pain. They believe we should go there weekly, and we don't.

        As far as the doctors in Montreal being "Miracle Workers" let me make something clear about them. Never, in all our conversations with them have they ever told me that their brace would hold Nicole's curve or make it better. It's funny because even though they are in a different country than our ortho in the U.S, they all said the same thing to us. "We don't have a crystal ball. We have no idea if your curves will hold."

        Of course, they believe in their brace. They believe that if Nicole has the type and size of curves that are cooperative, their brace will do the job. But as we all know, the million dollar question is whether or not she has those types of curves. The good news is that one day we will know more about scoliosis so that those questions will be answered well before we are at this stage.

        But for those families who are getting excellent results with Spinecor and seeing their little children live comfortable lives in a comfortable brace, it is difficult to not "sing their praises." I thank God for our Doctors in Montreal because my daughter is not suffering by wearing their brace. The first thing I said to them on the phone was "Thank you so much for inventing this brace."

        Sorry for the ramble.
        Melissa
        From Bucks County, Pa., USA

        Mom to Matthew,19, Jessica, 17, and Nicole, 14
        Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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        • #19
          Originally posted by gerbo
          I am not surprised that parents believe claims being made (after all, the practitioners are able to spin an extensive web of pseudoscientific theory, which can sound so plausible) it surprises me more that the actual practitioners believe their own theories, and from my experience, they are genuinely convinced of the rightnessness of their own theories and therefor of the benefits of the treatment based on that theory. It seems a bit like religion (hope i am not wading in forbidden territory); if you believe in god, you believe in the healing power of prayer, if you believe in dislocated, subluxated out of place joints, you believe you can heal by putting everything back into place, if you believe in ying and yang....etc, etc. The only protection againstplausible psuedoscience ruling our life is going to be "hard scientific evidence" or at least the willingness to engage into a scientific, evidence based approach to treatment.
          OMG!!!!! Gerbo your insight is so amazing I wanted to add to this that alternative practitioners have to believe in their unproven theories otherwise they would go out of business.

          Sherie,
          I know exactly where you're coming from and I hope I didn't hurt anyone and especially you with my flippant comment about believing in the tooth fairy and Santa Claus as an adult. I know when a parent is desperate, they are very very vulnerable. In my own daughter's case it was a matter of life and death and making the "right" decision. Infantile scoli parents become a different breed altogether and are hardened veterans compared to adolescent scoli parents. I have been dealing with scoliosis for close to 6 years and we have another 9 years before Deirdre finishes growing. It makes me really really upset when I read about the Dr. Woggons of the world.
          Last edited by Celia; 04-20-2007, 03:35 PM.

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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          • #20
            thanks celia for kind comments

            and i agree, no promises are made, the only thing we can go on is the statistics and our trust in the practitioners we are dealing with (and ofcourse the improvements which we cannot help seeing unfolding in front of our eyes)

            The big, hugely big thing for me is though is the maintenance of the quality of life (though l has sores currently on her legs from those straps, but will she wear cycling shorts?/, forget it) and everytime i can give her a hug without feeling that plastic harnas in between us, i bless the day we gambled on the spinecor.

            re practitioners having to believe in what they are doing for business (and reputation) reasons, this is also so true for "proper" scientists, and the damage they can fo is terrible. One of the worst UK examples (you might have come across this over there) was dr andrew wakeman, a previously reputable doctor, who in the late 90's developped the theory (not based on proper evidence) that MMR vaccination caused autism. His life, career, reputation than rested for a long time on this theory, which he kept defending for years on end, enticing to many parents not to have their children properly vaccinated, with all the obvious resulting harmful effects./

            Talking about having to believe your own theories for career reasons; clearly certain politicians in the USA and UK had to believe that there were WMD in Iraq (and more) to warrant their existence. see what damage that has done (is doing.....)
            Last edited by gerbo; 03-24-2012, 05:01 AM.

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            • #21
              Hi all

              the point i was trying to make (sorry i'm dyslexic and i find it difficult to put into words my thoughts) is that i thought structural was talking generally and specifically about anyone. I son't really understand or grasp the rational behind chiro's as they don't figure highly in treatment in this country or the region i live in for scoliosis or kyphosis. Its either surgery, bracing, wait and watch or physio.

              I enjoy coming to this site and reading about others experiences it helps me come to terms with my own situation. I understand people want the best for there children and exposing any quack is very important. But to steel from another anology one mans quack is another mans saviour. What works for one may not work for another. I think it important we debate all forms of treatment equally. Spinecor seems to be an amazing concept that has helped many many children which is fantastic and seems to have revolutionised bracing. But there are many other forms of treatment out there and we need to know about them all

              One difference between the states and the UK seems to be cost of treatment we have the NHS which is free at point of contact and private for those who choose it or can afford it. We only have a few alternative therapies in this country so we don't seem to have a bigger problem as you do in the states with quacks. Having said that one quack is one too many. I just think that all views have the right to be aired and then its up to us to judge what is right and wrong. Having said all that if something has clearly been proved to be wrong or is the subject of fraud then it should be stamped on by the authorities

              z

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              • #22
                Hi all

                the point i was trying to make (sorry i'm dyslexic and i find it difficult to put into words my thoughts) is that i thought structural was talking generally and not specifically about anyone. I son't really understand or grasp the rational behind chiro's as they don't figure highly in treatment in this country or the region i live in for scoliosis or kyphosis. Its either surgery, bracing, wait and watch or physio.

                I enjoy coming to this site and reading about others experiences it helps me come to terms with my own situation. I understand people want the best for there children and exposing any quack is very important. But to steel from another anology one mans quack is another mans saviour. What works for one may not work for another. I think it important we debate all forms of treatment equally. Spinecor seems to be an amazing concept that has helped many many children which is fantastic and seems to have revolutionised bracing. But there are many other forms of treatment out there and we need to know about them all

                One difference between the states and the UK seems to be cost of treatment we have the NHS which is free at point of contact and private for those who choose it or can afford it. We only have a few alternative therapies in this country so we don't seem to have a bigger problem as you do in the states with quacks. Having said that one quack is one too many. I just think that all views have the right to be aired and then its up to us to judge what is right and wrong. Having said all that if something has clearly been proved to be wrong or is the subject of fraud then it should be stamped on by the authorities

                z

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                • #23
                  Sherie,

                  I don't think Dave posted here to have people throw it back in his face,
                  Neither do I... I don't believe I was throwing anything back in his face nor was I calling him, or you, gullible. It simply raised a thought that I regrettfully shared regarding public awareness and education on the most basic of levels. It was actually in SUPPORT of you folks, not an insult. I SUPPORT ALL OF YOUR EFFORTS... .


                  Please folks, I did not intend anything I said to be an insult or to start an argument here. As I said in my first post, my comment wasn't directed at anyone... and I meant that. So please don't get on my case as usual accusing me of ... .

                  Nor do I believe that any of you are to blame for decisions you've made.. that wasn't what I was implying.

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                  • #24
                    oops it appears i have posted the above post twice sorry

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                    • #25
                      Maybe the fact I was dealing with a life threatening condition for my 19 month old daughter molded me into the *no nonsense* kind of person I am. We didn't have time to tinker with unproven theories or pie in the sky claims from chiropractors or alternative practitioners. When I asked the chiropractor why he wanted to put weights on my baby's head he looked at me as though I had asked the most ridiculous question in the world and went off on some confusing vague explanation why it would help. He also didn't want to put her in any kind of brace and wanted her to wear shoulder weights as well!!!!! His answer didn't make any sense to me and THANK GOD for the internet because that evening I did a search on how weights on the head could possibly correct scoliosis and couldn't find anything in a reputable medical journal. It defies logic how head weights/shoulder weights can help, if anything it will make the scoliosis worse by applying further asymmetric loading forces on the spine. This chiropractor called me numerous times at the house and even called me the same day my daughter went into her first cast.


                      *
                      Last edited by Celia; 04-20-2007, 03:22 PM.

                      Canadian eh
                      Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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                      • #26
                        now relax structural, I really think you are trying ever so well to be considerate and thoughtful. (sounds more patronising than was meaned). Keep going!

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                        • #27
                          celia, our initial chiropracter was like that; i.e. writing to me after her four "treatments", asking how l was doing, and so convinced that she was going to cure l's scoliosis. The worst wasn't potential physical harm (She hardly did anything physical) or the finance (she only proposed 4 sessions) but the false hope she created when she told us and our daughter that "I'll straighten you out". Makes me cringe if i think about it. We still call her "the witch" when we pass her house, (crystals under the bed and ghostcatchers in the window).
                          Last edited by gerbo; 03-24-2012, 05:00 AM.

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                          • #28
                            Gerbo,

                            I agree with what you're saying. I think it's imperative the practitioners believe in their premise in order to practice their work. What I think is troublesome is when they leave school and never again question the premise. Personally speaking, I always question the premise upon which my work is based and refer out when necessary. With each person who enters someones practice we must question whether our particular discipline is appropriate for their condition. I'm not putting chiropractics down, but I do feel it is often misleading in a variety of ways and scoliosis is a condition that requires more than just vertebral adjustments... it is not necessarily the result of nerve impingment or displacement of bones.. those are probably going to be inevetable occurrences with the condition at times and chiro could possibly help manage such. I don't propose that what I do is the be all, end all answer... but it is a sound and logical approach when you consider the details.

                            I also see your point about harm vs. no harm theory... but keep in mind that if you're "stretching" your daughters ligaments yourself (highly unlikely) then it would be safe to say that a trained professional working with the same idea you have is going to be a safer approach than doing it yourself. And stretching ligaments is not the best thing to be doing on your own... once you stretch them you have to live with it... they don't 'bounce back' as muscles will. And if you compromise the support around the joints (ligament laxity) you will create a demand on the muscular system to increase its tonus to then provide the support that the ligaments are no longer able to. It's more complicated than you sometimes suggest and I don't really see the "harm" in relying on a professional to do the work for you.

                            Again, no harm meant here... I'm just trying to say that not all "alternative" (which aree often "traditional" actually... i.e.-precursed the advent of pharmaceutical and surgical medicine) is going to cause harm... I'm concerned and skeptical however just as you are.
                            Just my two cents...
                            structural
                            Last edited by structural75; 04-20-2007, 08:55 AM.

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                            • #29
                              Originally posted by gerbo
                              ...the false hope she created when she told us and our daughter that "I'll straighten you out". Makes me cringe if i think about it.
                              When I asked the chiropractor how many cases he had corrected he replied he was having "encouraging" results and went on to show me two side by side x-rays of an adult patient he had helped.... for the life of me, I couldn't see the difference between the two x-rays. I knew then and there, I was wasting my time.


                              *
                              Last edited by Celia; 04-20-2007, 03:22 PM.

                              Canadian eh
                              Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                              Comment


                              • #30
                                Now for my infamous disclaimer (let's see if it works this time)... The following was a quote from Celia that I actually agree with and wanted to extract from her post to comment on. Let it be known that I have nothing against what Celia said, nor do believe in any way shape or form that hanging weights from ones body is an intelligent or effective approach.

                                It defies logic how headweights/shoulder weights can help, if anything it will make the scoliosis worse by applying further asymmetric loading forces on the spine.
                                So let's forget about hanging weights from the body for a moment... ..."applying further asymmetric loading forces on the spine." Isn't this what gravity is doing to a scoliotic curve? It also reminded me of the spinecor (which I softly support) in that the strapping system is doing just that, applying asymmetric force upon the spine between the pelvis and the top of the rib cage. Although it is positioned and such to correct the curve, what impact is this compression having on the formation and development of the intervertebral discs? Are they in jeopardy of bulging, collapse, extrusion, intrusion, herniation or degeneration due to lack of adequate hydration and such? I'm certainly not suggesting the brace doesn't help slow, hold or decrease the curve, but what are the long-term ramifications of constant excessive compression? Just my curiosity at play here... .

                                I wanted to add to this that alternative practitioners have to believe in their unproven theories otherwise they would go out of business.
                                In all fairness (instead of trying to condemn everyone but MDs), ANY type of practitioner, MDs included, must believe in what they do to make a living, whether it's accurate or not. There are many surgeons who feel that the knife is the only answer for many conditions, whether it's necessary or not.... there is a certain amount of financial motivation behind that reasoning I'm sure (one surgery amounts to a lot of money).

                                I am a 'traditional' practitioner (some "alternative" practices have been around long before bracing, surgery or pharmaceuticals, which makes them more traditional than modern day 'conventional' medicine) and the work I do has not been scientifically studied as it pertains to scoliosis, or many other conditions for that matter. It doesn't mean that it isn't applicable to the condition. In fact most conditions I work with (back pain/herniations/post-surgical complications/ etc, whiplash, frozen shoulder, etc) haven't been formally 'approved' through a study. But I do get consistently good long-term results (without dragging people along for years of ineffective treatment), as do others in my profession, often when conventional methods fail. There are however studies performed over the last 30 years to validate my professions effect on human structure and function. So it is anything but unproven... sometimes you have to do the math yourself to see its potential benefit in unique situations despite the lack of 'scientific' evidence (clinical evidence is just as convincing and valid, if not moreso).

                                I would like this forum to be a place, among other things, for people to be able to explore, research and possibly utilize non-surgical treatment/management methods for scoliosis. It's unfair to discourage people from trying or putting down "alternative" therapies as a whole just because of the Dr. Copes/Dr. Wogoons/ETC. of the world. I don't support what they do but I also see us spending more time discrediting things than we do asking questions and learning about other approaches. I'm sure if we highlighted all of the unethical and disillusioned surgeons out there we wouldn't think too highly of MDs either. So try and remember that there are in fact people practicing "alternative" approaches who care deeply for their patients, are honest, trustworthy and are not represented by these select individuals or professions. The internet has its limitations too as far as obtaining all of the information.

                                Seriously, if folks are going to use things like yoga and pilates, then surely they might possibly derive benefit from disciplines that are far more specific, have more qualified and educated practitioners and are meant to address musculoskeletal dysfunctions.

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