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  • #91
    mamamax

    Please don't waste your time responding to anyone who does not like the Sharon Dun article. It would be waste of time. Continue to share with us information like you have done so far. It is extremely helpful. I do not see any need to edit your posts.

    Those challenging you and the article are once again adding no value to the conversation. With that said, let me say "Thank You" for sharing Amazing Brace. I am surprised I had not come across it yet.

    Sharon Dunn sounds like many moms and dads I have chatted with the past year who are all trying to manage scoliosis for their child. If she is confused then WE ARE ALL CONFUSED.

    She raises many points that I have raised. Some of them are addressed in the article. I will be adding this article to my scoliosis website. Here are a few specific points from the article that I find very interesting.

    #1
    ======

    Back in "English" Canada, I contacted Dr. Ben Alman, head of the orthopaedic division, and AIS specialist, at the Hospital for Sick Children, to find out why the hospital doesn't use the Quebec brace. "The reason SpineCor isn't used here is not because it is good or bad," Alman told me. "It's a financial issue. OHIP [Ontario's health insurance plan] doesn't cover it." Hard braces are covered "at least partially," he said. Are parents really not being told about this brace because of the cost? Alman added, "Part of the problem is that the brace is too new to know for certain long-term results."


    This was my expectation on why some orthopedic surgeons do not recommend it: insurance does not cover it. Our orthopedic surgeon recommended it but told us that our insurance would probably not cover it, and he said if that was an issue we may want to go with a Boston brace instead.

    Here is a very recent example of a similar situation. A woman took her child to see a doctor for VBS. The child is an ideal candidate for it. He did not recommend it. She did not understand. After some prodding on why, he said it was because insurance would not cover it. It is unfortunate that medical recommendations (and bracing recommendations) are influenced by the insurance companies.

    #2
    =======
    A $12-million grant from the Quebec government in 1992 enabled Rivard to get the brace off the ground, and to begin research on the development of new instrumentation to be used in the place of fusion. The intellectual property rights for the brace are owned by Sainte-Justine's.


    Some on this forum claim (as if it was fact and misleading people) the only reason Dr. Rivard and Dr. Coillard are promoting the SpineCor brace is because they are the inventors and are making more money. I have often responded that none of us know the financial incentives, if any, exist for the inventors, so we should not make that assumption. It looks like the IP is owned by Sainte-Justine's, not the inventors. Therefore, maybe Sainte-Justine's makes money. But who knows?

    #3 (not from the article)
    ==================
    Regarding adult curve correction with the SpineCor brace here is what is stated on spinecorporation.com:

    Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date.


    So, at least with this statement it looks like some cobb angle reductions can be achieved from postural improvements. But, since this is so new, who knows what may be possible. Most orthopedic surgeons and brace inventors/manufacturers make very little claims on curve reduction for children. Three of the four orthopedic surgeons we met all said that bracing would NOT reduce Syd's curves, only stabilize it from progressing.

    Syd's T4-T12 (and T5-T12) curve has decreased from 36 to 23 (with SpineCor brace). Many others have had similar results with SpineCor or other braces. It is cases like this that turn everything upside down on traditional thinking.

    I learned the other day that VBS has been around since the 1950s but because it failed to show positive results it was abandoned. Then Dr. Betz started it up again and now it is showing great results.

    It is through this level of experimentation that we progress (and sometimes have setbacks). Who knows, maybe the combination of some physical therapy (like Schroth and others) along with SpineCor may some day be the best treatment for pain reduction and curve correction for adults. We can only hope.

    Thank you for sharing this article. I will make sure it is available for many others to read.

    Michael
    Last edited by michael1960; 04-08-2010, 08:36 AM.

    Comment


    • #92
      Thank you, rohrer, mamamax and michael for your postings on this thread. I agree with Michael that waiting and watching is not much of an approach. I find it appalling that the SRS crowd thinks this is GOOD medicine. One of the things that has struck me with all of the orthos that I've taken my daughter to (three so far) is an utter lack of curiosity. They really don't seem to know much about scoliosis and further they don't seem to care that they don't know. Where would we be with cancer research if an equal lack of curiosity and concern was the norm in the field?

      Comment


      • #93
        Originally posted by michael1960 View Post
        dailystrength and mamamax (and others)

        While I have incredible respect for orthopedic surgeons, chiropractors and other professionals, all of them are still trying to figure out the best treatment for scoliosis. I have reached the point, with confidence, along with many others, that we have to manage our own scoliosis or that of our children, and we need to do it in a holistic manner working with many different professionals as we feel is required.

        Michael
        Yes, I could not agree with you more. I asked for a surgeon referral for Schroth and was lucky to get it, and to have the insurance accept that as legit. Hey - it's a lot cheaper than surgery so its to their advantage! I wrote two long letters practically begging my insurance Co. And got it, yesterday. I hope to be a success story. I am determined.
        34L at diagnosis; Boston Brace 1979
        Current: 50L, 28T

        Comment


        • #94
          Originally posted by mamamax View Post
          Thanks! It is pretty amazing :-) Where exactly are you going, sounds like a great place!

          Yes, I was given a few Schroth exercises to work with - I've not been very compliant with that .. when the future permits, I'll look into an intensive workshop somewhere. In the mean time, the book you recommended is proving valuable (thanks so much). And I'm now walking more in brace (in the MBTs of course). I was told I could to Schroth out of brace. Interestingly enough, Sharon Dunn's son did no exercise whatsoever, and has maintained his correction post treatment.
          It's Jennifer Graham at Graham Therapy and Fitness and I see now it's the Rig-Chenau Brace they work with if the Dr prescribed it. Here is the link: http://www.grahamtherapyandfitness.com/AboutUs.html. That's too bad it's not the brace you are appreciating so much. So, I probably will not do the brace.
          34L at diagnosis; Boston Brace 1979
          Current: 50L, 28T

          Comment


          • #95
            Originally posted by mamamax View Post
            (of Sharon Dunn's son) and has maintained his correction post treatment.
            1. How long has he been out of brace?
            2. How much correction did he get over his pre-brace number?

            You are misleading people (or worse) with this post. Do you care?
            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


            • #96
              Originally posted by michael1960 View Post
              mamamax

              Please don't waste your time responding to anyone who does not like the Sharon Dun article. It would be waste of time. Continue to share with us information like you have done so far. It is extremely helpful. I do not see any need to edit your posts.

              Those challenging you and the article are once again adding no value to the conversation. With that said, let me say "Thank You" for sharing Amazing Brace. I am surprised I had not come across it yet.

              Sharon Dunn sounds like many moms and dads I have chatted with the past year who are all trying to manage scoliosis for their child. If she is confused then WE ARE ALL CONFUSED.

              She raises many points that I have raised. Some of them are addressed in the article. I will be adding this article to my scoliosis website. Here are a few specific points from the article that I find very interesting.
              Thank you Michael - I agree. Sharon Dunn is an amazing woman and very open to friendly conversation, so I hope you or anyone else feels free to write her. If you cannot find her address on the Internet just send me a PM and I'll forward it to you (or anyone else). Her article also appears at the Spinecor manufacturer's web site under News.
              #1
              ======

              Back in "English" Canada, I contacted Dr. Ben Alman, head of the orthopaedic division, and AIS specialist, at the Hospital for Sick Children, to find out why the hospital doesn't use the Quebec brace. "The reason SpineCor isn't used here is not because it is good or bad," Alman told me. "It's a financial issue. OHIP [Ontario's health insurance plan] doesn't cover it." Hard braces are covered "at least partially," he said. Are parents really not being told about this brace because of the cost? Alman added, "Part of the problem is that the brace is too new to know for certain long-term results."


              This was my expectation on why some orthopedic surgeons do not recommend it: insurance does not cover it. Our orthopedic surgeon recommended it but told us that our insurance would probably not cover it, and he said if that was an issue we may want to go with a Boston brace instead.

              Here is a very recent example of a similar situation. A woman took her child to see a doctor for VBS. The child is an ideal candidate for it. He did not recommend it. She did not understand. After some prodding on why, he said it was because insurance would not cover it. It is unfortunate that medical recommendations (and bracing recommendations) are influenced by the insurance companies.

              #2
              =======
              A $12-million grant from the Quebec government in 1992 enabled Rivard to get the brace off the ground, and to begin research on the development of new instrumentation to be used in the place of fusion. The intellectual property rights for the brace are owned by Sainte-Justine's.


              Some on this forum claim (as if it was fact and misleading people) the only reason Dr. Rivard and Dr. Coillard are promoting the SpineCor brace is because they are the inventors and are making more money. I have often responded that none of us know the financial incentives, if any, exist for the inventors, so we should not make that assumption. It looks like the IP is owned by Sainte-Justine's, not the inventors. Therefore, maybe Sainte-Justine's makes money. But who knows?

              #3 (not from the article)
              ==================
              Regarding adult curve correction with the SpineCor brace here is what is stated on spinecorporation.com:

              Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date.


              So, at least with this statement it looks like some cobb angle reductions can be achieved from postural improvements. But, since this is so new, who knows what may be possible. Most orthopedic surgeons and brace inventors/manufacturers make very little claims on curve reduction for children. Three of the four orthopedic surgeons we met all said that bracing would NOT reduce Syd's curves, only stabilize it from progressing.
              Yes - very definitely there is a postural element to scoliosis - I have an article somewhere that addresses that. Originally found it through Scoliosis Journal I believe. The article actually gave a quantitative amount for adolescents and said that the amount for adults was yet to be determined. Now, when we step outside the bracing box for a moment - there is Martha Hawes who reduced her curvatures by 50% ... she publishes every 4 years and has not yet hit an end point. So this is fascinating from the adult point of view. Martha is also very open to friendly conversation should anyone wish to write to her.

              Syd's T4-T12 (and T5-T12) curve has decreased from 36 to 23 (with SpineCor brace). Many others have had similar results with SpineCor or other braces. It is cases like this that turn everything upside down on traditional thinking.

              I learned the other day that VBS has been around since the 1950s but because it failed to show positive results it was abandoned. Then Dr. Betz started it up again and now it is showing great results.

              It is through this level of experimentation that we progress (and sometimes have setbacks). Who knows, maybe the combination of some physical therapy (like Schroth and others) along with SpineCor may some day be the best treatment for pain reduction and curve correction for adults. We can only hope.

              Thank you for sharing this article. I will make sure it is available for many others to read.

              Michael
              Thank you Michael - Please let us know as soon as your web site is up and running - sounds like it is going to be great!

              Comment


              • #97
                Originally posted by dailystrength View Post
                It's Jennifer Graham at Graham Therapy and Fitness and I see now it's the Rig-Chenau Brace they work with if the Dr prescribed it. Here is the link: http://www.grahamtherapyandfitness.com/AboutUs.html. That's too bad it's not the brace you are appreciating so much. So, I probably will not do the brace.
                Well I hope you're loading up your camera and planning on keeping a journal, sounds like a productive time ahead. Chenau is being used for adults in Germany - I don't know about the US.

                Comment


                • #98
                  Mamamax, you should remove Post #80. You can't substantiate the claim. If you could you would have by now.

                  Once you do that, I will remove posts 81, 89, 95 and this one, 98.
                  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


                  • #99
                    Originally posted by Pooka1 View Post
                    Mamamax, you should remove Post #80. You can't substantiate the claim. If you could you would have by now.

                    Once you do that, I will remove posts 81, 89, 95 and this one, 98.
                    As attractive as your offer to remove four obnoxious posts is to me - I have decided to simply edit post #80.

                    The last time we went though something like this - It was over Martha Hawes, right? I wasn't wrong then and if memory serves me correct, I am not wrong on this one.

                    Comment


                    • Originally posted by mamamax
                      As attractive as your offer to remove four obnoxious posts is to me -
                      Posts asking you to explain how you know what you claim to know are obnoxious?

                      Why?

                      Knowledge is power.
                      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 mamamax View Post
                        Sharon Dunn's son did no exercise whatsoever, and has maintained his correction post treatment.

                        Edit: The above anecdotal note concerning Sharon Dunn's son - was offered from memory of my correspondence with her.
                        If you aren't sure he maintained his correction them you need to remove that. It goes against the claims of even the inventors and is frankly unbelievable.

                        If you could have substantiated it you would have by now.
                        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


                        • You need to stop it Sharon. Jeezzz I feel like I'm engaged in a bracing debate with Dr. Stitzel. Only he has manners. I'm just sayin

                          Comment


                          • Originally posted by mamamax View Post
                            You need to stop it Sharon.
                            You need to control what you read rather than what others write EXCEPT when counterfactual stuff is posted. That is the one reason a moderator is ever needed. If we allow nonsense then this might as well just degrade into a group sing-a-long.

                            Jeezzz I feel like I'm engaged in a bracing debate with Dr. Stitzel. Only he has manners. I'm just sayin
                            This is too emotional for you to discuss.
                            Last edited by Pooka1; 04-08-2010, 07:29 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


                            • I don't think emotional is the right word. Ridiculous, comes to mind.

                              It is time for the hamster dance I do believe.

                              For those who don't know about the hamster dance - a stress relief thing originally offered by Sharon, long ago

                              http://www.hampsterdance.com/classics/originaldance.htm
                              Last edited by mamamax; 04-08-2010, 07:19 PM.

                              Comment


                              • Originally posted by mamamax View Post
                                I don't think emotional is the right word. Ridiculous, comes to mind.

                                It is time for the hamster dance I do believe.

                                For those who don't know about the hamster dance - a stress relief thing originally offered by Sharon, long ago

                                http://www.hampsterdance.com/classics/originaldance.htm
                                That one is broken.

                                This one works:

                                http://www.webhamster.com/
                                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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