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  • #61
    Originally posted by mamamax View Post
    The rest of their life??? That is your opinion Sharon - not a fact.
    Yes that's my opinion and it is based on the identical amount of evidence that Rivard/Coillard have on the matter.
    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


    • #62
      Mamamax,
      Have you gotten any curve correction with your brace? Is it comfortable and relieve pain? Did you get it from a Chiropractor or an MD? Just wondering about your treatment program. Do you know how long they expect you to wear it? Do they have you do Physical Therapy with it? These are all questions I will be asking about on Thursday. Sorry to put you on the spot.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #63
        Oops.
        Mamamax,
        They don't want us talking about Spinecor except on another thread as per the moderator Linda Racine. You can private message me.
        Thanks!
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

        Comment


        • #64
          Originally posted by rohrer01 View Post
          Oops.
          Mamamax,
          They don't want us talking about Spinecor except on another thread as per the moderator Linda Racine. You can private message me.
          Thanks!
          I did?

          --Linda
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • #65
            I thought you only wanted official published information on this brace as there was apparently some heated debate going on at the time. Anyway, I read mamamax's story on the other thread. Sorry if I misunderstood.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #66
              Originally posted by Pooka1 View Post
              Yes that's my opinion and it is based on the identical amount of evidence that Rivard/Coillard have on the matter.
              Please share a reference I can read (other than your opinion)?

              Comment


              • #67
                Originally posted by rohrer01 View Post
                Mamamax,
                Have you gotten any curve correction with your brace? Is it comfortable and relieve pain? Did you get it from a Chiropractor or an MD? Just wondering about your treatment program. Do you know how long they expect you to wear it? Do they have you do Physical Therapy with it? These are all questions I will be asking about on Thursday. Sorry to put you on the spot.
                Yes I have. And yes, it is comfortable considering the pain that it relieves and I have been compliant since April of last year. I receive my treatment from a chiropractor who specializes in scoliosis and who has trained with MDs (the inventors, one of whom is an SRS surgeon) my provider is also Schroth certified through the German clinic. Vital to find someone who is both certified by the manufacture and experienced (in my opinion). I do little exercise. As for how long I will have to wear the brace - that is yet to be determined, standard protocol is two years. I keep in touch with Sharon Dunn (Amazing Brace). Her son began treatment as a young adult .. he is not wearing the brace for the rest of his life. Hope this helps - and best of luck to you on Thursday!

                Comment


                • #68
                  Originally posted by mamamax View Post
                  Please share a reference I can read (other than your opinion)?
                  If Rivard/Colliard have no reference then why do I need one? I have common sense in my side. Why should two years of brace wear in an adult stop progression once the brace is off? There is no known or proposed mechanism for that. The fact that you had pain relief in brace when you first got it is proof the brace is holding your curve up. And as with all braces, it is restricting movement and taking over what your muscles used to do. So when you come out of it, your muscles will be less able to support your spine, incredible claims from the inventors about how the brace is actually not a brace aside.

                  You understand that the inventors admit Spinecor for adults has different objectives than in children. They do not claim the brace will permanently alter the natural history of scoliosis in adults. They claim it might help with pain. They chose a two-year protocol as the first experimental design. These researchers are neither clairvoyant nor magical. That number is pulled out of a hat... there is not a single piece of credible evidence pointing to two years being appropriate as opposed to one or three or 25 for the objectives in adult treatment (or kids for that matter but let's not get into that). Not a single piece.

                  You say you are in touch with that guy in Canada and I do believe his story of pain relief with the brace. For folks not familiar, he is a young adult who is subsurgical IIRC and wears the brace for pain relief. You say he isn't wearing it forever. How long did he wear it initially and has he ever gone back to wearing after stopping? Are you saying he wore it for some time and now he is completely pain free without the brace for any length of time? If so the world needs to know about that.
                  Last edited by Pooka1; 04-07-2010, 06:09 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


                  • #69
                    Sharon - I suggest you pick up the phone and have a conversation with Rivard and/or Colliard. Sharon Dunn's email address is all over the Internet - you could also write her. Adult bracing (in general) is not something we have many studies on ... it is a rather new concept (though if you research Scoliosis Journal my providers do have an adult study there). All we have really at this point, are "reports" from those like myself who are engaged in it. I'm not interested in becoming an authority on the subject - I'm interested in a treatment that will keep me out of the "needs surgery" category. If you really want to become more of an authority on the subject I suggest some conversation with others who are more qualified to provide you with the information you seek - that would be far more productive than a "debate" between you and I - though probably not nearly as entertaining ;-)

                    Comment


                    • #70
                      Originally posted by mamamax View Post
                      If you really want to become more of an authority on the subject I suggest some conversation with others who are more qualified to provide you with the information you seek - that would be far more productive than a "debate" between you and I - though probably not nearly as entertaining ;-)
                      You know as much about adult bracing as Rivard and Colliard do. You are as expert as they are at this point.

                      Your pain relief has taken you off the surgery table and that is great. Spinecor seems very valuable for that in adults if the progression doesn't get to a point where surgery is required for health reasons.

                      If you ask them, they will admit they pulled the two years out of a hat or got it from a random number generator or had a guy at a carnival guess it. It very obviously has no foothold in reality or evidence.
                      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
                        Originally posted by Pooka1 View Post
                        Y
                        If you ask them, they will admit they pulled the two years out of a hat or got it from a random number generator or had a guy at a carnival guess it. It very obviously has no foothold in reality or evidence.
                        Really? And from where does this information come? Is this another opinion - or is it fact? References (if fact) please :-)

                        Comment


                        • #72
                          Originally posted by mamamax View Post
                          Really?
                          Yes really. They are BEGINNING the research on adults. How would they have any evidence in hand?

                          THINK. Just think. Please.
                          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 mamamax View Post
                            And from where does this information come?
                            Simple observation.
                            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


                            • #74
                              mamamax

                              I wish the rules of this forum were: please post only if you have personal experience with the treatment, know something about the treatment, or have some value to add. Then we could get rid of all the unbiased and what I consider unhelpful opinions.

                              Regarding SpineCor helping an adult, your post is great and I hope many people find it and reach out to you. And it looks like someone did yesterday. That is great. That is the purpose of a forum. People PM me all the time because they don't want to get into a conversation, share their experience, only to have someone on the forum provide negative comments to what they said. It discourages people from participating in the forum.

                              Regarding SpineCor for JIS, we have been very pleased with it. It clearly works. However, for older AIS children going through a growth spurt I don't know. I have my concerns.

                              So, let's all conclude without comments about Rivard and Coillard, the SpineCor brace has been effective to help some adults manage pain. And, let's all conclude that it has been effective to help JIS children not only stabilize the curve, but reduce the curve.

                              When my daughter was 7 and first diagnosed with scoliosis (23 degrees) and all the orthopedic surgeons were telling us to do nothing, I wish we would had started bracing with the SpineCor brace. Then my daughter increased to 36 and we are fighting to get it back down. She has been in the SpineCor for about 5 months and her 36 degree curve T5-T12 is now 23. Her largest curve is now T5-T9 and is 28 degrees. We are moving in the right direction. And my daughter has no problem wearing it all the time, and it has no impact on her activities, especially playing sports.

                              I would like to hear others share their stories here and experience with SpineCor without having others, who have no experience with it, and have serve no other value than to criticize the inventors and chiropractors who are providers of it. Our chiropractor has done a great job fitting the brace and helping my daughter reduce her curve.

                              So, to be clear, pediatric orthopedic surgeons from Childrens Hospital recommended the SpineCor brace, the initial fitting was with an orthotist at Children's Hospital, and the latest adjustments have all been done by our chiropractor. And we are very pleased. I have considered going to Montreal to meet with Rivard and/or Coillard to confirm we are getting maximum correction out of the brace.

                              Think about how many kids could be in a SpineCor brace who may have a 15-20 or 20-25 degree curve (23 degrees in our case) that could prevent the scoliosis curve from progressing and could lead a very normal active life while bracing. And since surgeons may not recommend bracing at this level, a SpineCor orthotist or SpineCor chiropractor may be the only place to get the brace.

                              Thanks
                              Michael

                              Comment


                              • #75
                                Originally posted by michael1960 View Post
                                mamamax

                                I wish the rules of this forum were: please post only if you have personal experience with the treatment, know something about the treatment, or have some value to add. Then we could get rid of all the unbiased and what I consider unhelpful opinions.
                                Yes, I agree completely. Your suggestions would go a very long way in providing useful information to those seeking answers and be very helpful in making treatment decisions.

                                Regarding SpineCor helping an adult, your post is great and I hope many people find it and reach out to you. And it looks like someone did yesterday. That is great. That is the purpose of a forum. People PM me all the time because they don't want to get into a conversation, share their experience, only to have someone on the forum provide negative comments to what they said. It discourages people from participating in the forum.
                                Thank you - my experience has been amazing and one of the reasons I remain here, amid the sometimes overwhelming conflict, is to be here for anyone else who may benefit as well.
                                Regarding SpineCor for JIS, we have been very pleased with it. It clearly works. However, for older AIS children going through a growth spurt I don't know. I have my concerns.
                                I am so pleased to hear that this bracing is working so well for your daughter. Literally makes my heart smile. As for the growth spurt, I think many worry about that point in time. Another reason I stay here is to read all I can find about that. Given the heredity factor, I could easily one day be the grandmother of someone in a similar situation .. the more information I can gather (and stay on top of) the better. Because the condition is literally so unique to each - sometimes Spinecor may hold during a growth spurt, and other times it may not. There is no predicting unfortunately. Sometimes treatment choices may have to change no matter what we do.

                                So, let's all conclude without comments about Rivard and Coillard, the SpineCor brace has been effective to help some adults manage pain. And, let's all conclude that it has been effective to help JIS children not only stabilize the curve, but reduce the curve.
                                Excellent comments. We can also conclude that there are times when Spinecor can reduce the adult curvature. I do feel blessed to live during a time when it is becoming recognized, through the work of Dr. Martha Hawes, that the adult spine can indeed be rehabilitated beyond previously known/acknowledged conceptions.
                                When my daughter was 7 and first diagnosed with scoliosis (23 degrees) and all the orthopedic surgeons were telling us to do nothing, I wish we would had started bracing with the SpineCor brace. Then my daughter increased to 36 and we are fighting to get it back down. She has been in the SpineCor for about 5 months and her 36 degree curve T5-T12 is now 23. Her largest curve is now T5-T9 and is 28 degrees. We are moving in the right direction. And my daughter has no problem wearing it all the time, and it has no impact on her activities, especially playing sports.
                                That is an amazing correction! Obviously some natural history has been altered :-) I know you are hoping this will continue to hold through the growth spurt. Should for any reason you need a plan B ... the work of a German brace maker is proving quite promising with the Chaneau. I trust you are already investigating this?
                                I would like to hear others share their stories here and experience with SpineCor without having others, who have no experience with it, and have serve no other value than to criticize the inventors and chiropractors who are providers of it. Our chiropractor has done a great job fitting the brace and helping my daughter reduce her curve.
                                I don't know why some who have no first hand experience with this brace and its design are so passionate about bashing it (year after year). When someone speaks like they are an authority on a subject, when they are not, this does a great disservice to us all. I would like to hear from others also - but chances are we will not ... for when they do speak up, they are often shouted down. Who wants that as part of their treatment program?
                                So, to be clear, pediatric orthopedic surgeons from Childrens Hospital recommended the SpineCor brace, the initial fitting was with an orthotist at Children's Hospital, and the latest adjustments have all been done by our chiropractor. And we are very pleased. I have considered going to Montreal to meet with Rivard and/or Coillard to confirm we are getting maximum correction out of the brace.

                                Think about how many kids could be in a SpineCor brace who may have a 15-20 or 20-25 degree curve (23 degrees in our case) that could prevent the scoliosis curve from progressing and could lead a very normal active life while bracing. And since surgeons may not recommend bracing at this level, a SpineCor orthotist or SpineCor chiropractor may be the only place to get the brace.

                                Thanks
                                Michael
                                Few surgeons have taken the time to learn about Spinecor. To be honest, a lot goes into this bracing method, it is not an off the shelf treatment and it requires a lot of attention to detail and follow up (if one wants to duplicate the results of Rivard and Colliard). I am deeply grateful for the handful of chiropractors who have dedicated their lives to the use of this brace, trained with the inventors, compiled presentations for SOSORT, published studies in Scoliosis Journal - and also for those who have made the personal sacrifice to travel to many locations throughout the US in order to reach people like me, who otherwise would not have benefited from this treatment. Spinecor is a viable treatment option that should not be shouted down - or left out of the BrAist study.

                                Thank you so much for your comments. They have been very uplifting and like a breath of fresh air :-) Wishing you and your daughter all the very best in your journey.

                                Last edited by mamamax; 04-07-2010, 06:09 PM.

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