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  • #31
    Originally posted by Pooka1 View Post
    A good test of a hypothesis is to ask if it requires the vast majority of surgeons to be ignorant or nefarious. If the answer is yes then the hypothesis is wrong FULL STOP. Withholding Spinecor treatment if it works would be ignorant or nefarious on the part of most surgeons in the US. So that clearly isn't the case.
    I said something similar in another post, Sharon. That guys like Dr. Betz and Dr. Vitale have spent years (in Dr. Betz's case decades) searching for better treatment methods particularly for JIS. If the Spinecor brace, which many say is more comfortable and easier to wear than rigid braces, was effective in their opinion, I would bet my last dollar that they'd be the first ones in line to prescribe it and get trained in fitting it.

    Also, you are correct about the reasons WHY many dismiss the data published by Rivard/Colliard - not only because they, unlike Dr. Betz, are making money from Spinecor but there has been much discussion (and I know several patients this happened to) that their in-brace measurements are NOT reflective of a child's true curve and in many cases, once the true degree of curve is discovered the window has past for treating it either with another brace or VBS.

    Dr. Rivard even went so far as to tell one patient that if his brace didn't work, then no other brace would work. He clearly didn't want to lose a patient - or perhaps more accurately a "customer" because his practice and that of the chrios prescribing Spinecor seems to be a run like a business rather than the practice of medicine.
    Last edited by mariaf; 03-20-2010, 04:36 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

    Comment


    • #32
      Maria, yes I didn't think about the money aspect. I don't tend to associate the money aspect with surgeons as many/most(?) are paid a flat rate no matter how many surgeries they do as far as I know.

      But it is, of course, a live issue with inventors like Rivard. It doesn't have to be that way but it just is with some.

      Spinecor is so seemingly superior to patients and parents that they will always have that in their pocket irrespective of results and even if people have to go to chiros to get it. And at the prices I have seen, it must be a huge money-maker. I doubt the company is publicly held but is there any way to know what their annual profits are?
      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


      • #33
        Gayle

        Thanks. Funny you mention the SRS abstracts. I have been reading them for the past couple hours. Very good reading for a Saturday afternoon.

        I think that I have concluded from the forum discussions that the facts I thought that might be available, due to the emphasis of the facts in some posts, they may not exist.

        In the end, we have "professionals" performing studies and presenting results. These studies may or may not contain some level of bias in them. We have medical doctors doing studies on medical practices and we have chiropractors doing studies on chiropractic practices. And we have a couple orthopedic surgeons (Rivard/Coillard) doing studies on non-medical practices (flexible brace).

        And then when some people reference studies, these studies may not be applicable. The study may have only included AIS patients but the results of the study was assumed to apply to JIS patients.

        I can only hope that Dr. Rivard and Dr. Coillard (orthopedic surgeons) invested 10+ years in developing the SpineCor brace for the good of all the children who hate to wear a hard brace and to increase brace compliance, probably one of the top reasons bracing may not be effective.

        Dr. Betz recommends bracing to hold or improve the curve prior to surgery, so we know that Dr. Betz supports bracing (while Dr. Durrani does not).

        Once again, I value your input and perspective. I think I am done discussing this matter on the forum. It kind of goes round and round. I felt that I might actually get the facts or at least some clarity of what makes one study valid and another study invalid, other than a sense that there may be some bias that favors orthopedic surgeons. I was looking for something more conclusive.

        It is tough because embedded within all these studies, unfortunately, are "professionals" making false claims to further their own personal interest.

        In the end, if I had to pick only one "professional" to treat my daughter, it would be an orthopedic surgeon, specializing in the latest minimal invasive methods to treat scoliosis.

        If my insurance covers Dr. Durrani, I now have to decide on going with a "self-growing" rod that has never been placed in a patient but requires only 2 surgeries (1 to put it in, 1 to take it out) or go to Shriners Hospital for the hybrid rod that requires 16+ surgeries.

        Can I trust Dr. Durrani? While he makes no money on the self-growing rod he puts in Syd, he makes money on all others who use it. So..., is he doing it only to promote his self growing rod and make money or is he recommending it in the best interest of Syd. I have to assume, he is doing it for Syd. Just like I think Dr. Rivard and Dr. Coillard are doing it for Syd.

        So, not only the question of facts come into play, but the question whether the "professional" treating our children have a bias towards one solution vs another. I know you and others will disagree but let's not rule out that Dr. Betz may be a bit bias towards VBS, something in which he has invested many many years, including his reputation and the reputation of Shriners Hospital.

        So, in summary, despite my comments on Dr. Betz, Dr. Durrani, Dr. Rivard, and Dr. Coillard, I truly believe that each of them are doing it for one reason and one reason only, and that is to improve the lives of our children. And that is how I approach each of them. We have to remove any negative bias to their intentions and assume they are doing it for the right reasons. Then, we get back to the topic of what treatment is best. Gee, that is were we started. Sorry for the rambling. Just taking a break from reading research abstracts.

        Thanks for the references and links.

        Michael

        Comment


        • #34
          Actually, the price of SpineCor is interesting. Many who have been in SpineCor for several years say it is very cost effective. While a Boston brace may need to be replaced every year or 1.5 years, some children have been in the same SpineCor brace for 3-4 years with minimal investment.

          And one thing interesting about Rivard and Coillard that I have learned is that they do not promote replacing the brace and parts of it unless it is absolutely necessary. On the contrary, others, like my recent experience in NYC, the straps were replaced after 4 months.

          I agree, it would be interesting to see how much money the inventors make vs the other "professionals" including chiropractors, orthotists, and surgeons who recommend it and fit it.

          Again, I think, often, inventors are in it for all the right reasons (Rivard, Coillard, Betz, Durrani), to invent something that will make it better for the patients. Who can argue with these inventions:

          1. a flexible brace (vs hard brace)
          2. an internal brace using staples (and a potential long term solution)
          3. a self-growing rod (vs one that requires surgery every 6 months)

          For all of us, and our children, each of these inventions significantly helps our children get better and cope with scoliosis (with the assumption that they all work).

          While I am typing, my 8 yr. old is asking permission to wear her SpineCor brace tomorrow to a 2 hr birthday party, instead of the Boston brace. This is very important to her. She could have asked for no brace, but instead asked to wear the flexible brace. Very cool! And while she is home all weekend, she wears the Boston brace full-time (I even gave it an extra tug today!)

          I think it is not the inventors we need to worry about. It is all the other people who are trying to make a "buck" off of the inventions.

          Michael

          Comment


          • #35
            Originally posted by michael1960 View Post
            I know you and others will disagree but let's not rule out that Dr. Betz may be a bit bias towards VBS, something in which he has invested many many years, including his reputation and the reputation of Shriners Hospital.
            Hi Michael,

            First of all, while we may not agree on things like Spinecor or CLEAR, I hope you know the opinions I post here are meant with the intention of helping others from that I have learned in the past decade since my son was diagnosed. I don't claim to know more than others who have spent years as well doing their homework but I do have some strong views as I'm sure you've guessed and can be quite candid.

            But I respect the fact that you are surely trying to do what's best for your daughter.

            Regarding the quote above, I disagree if when you say "bias" toward VBS you mean that Dr. Betz would make any false claims about it or recommend it for a child who was not a good candidate. I'm not sure what "bias" means in this case.

            The one difference between, say, Dr. Betz and Dr. Rivard is while Dr. Rivard will tell a patient that no other brace will help her daughter, Dr. Betz will and HAS sent patients elsewhere for treatment. It could be that the wait at Shriners was long for VBS so he sent a patient to Dr. Vitale. I even know of one family who was considering either having VBS done in Philly or at Boston Children's and he recommended they go with Dr. Hresko in Boston since they'd be close to home and could get it done quicker. There are patients he has seen and told them that they were almost done growing and should just stick it out with their current brace, etc. He does not "push" VBS or even recommend it unless he feels the patient is a really good candidate for it. Most people hear of VBS and seek him out for a consult - many are told it's not a good optoin for them. He is not afraid to turn away business - I can't say the same about some of these other guys.

            And of course this is only my opinion, but again regarding the above quote and Dr. Betz.....I have known him for six and a half years and know much of the staff at Shriners as well and how they regard him. He is not concerned about his reputation (it's already well established) or what is best for himself or even the hospital as much as he's concerned about what is in the best interest of the child. I've seen proof of this time and time again over the years. Again, I don't expect others who don't know him as well to have the same perspective.
            Last edited by mariaf; 03-20-2010, 05:38 PM.
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • #36
              Thanks Maria

              I respect your opinion and have always valued it very much. And obviously I respect Dr. Betz as I am currently following his recommendations. Any of my comments that may feel otherwise are only for the purpose of discussion to show my respect to all professionals, including other orthopedic surgeons who are recommending some of the treatments you and others feel are not appropriate or proven for treating scoliosis.

              We could probably have an endless debate on all the various treatments and all the doctors/professionals who recommend them. Our own personal opinions will be based/biased on our own experiences in life and our own personal pursuit of knowledge and pursuit to do what is best for our child. It is through these differences that we all grow together.

              As you probably have learned I keep all options open and respect all those who have proceeded me and who have invested the time to make a difference, including doctors/professionals and all the parents.

              I hope some day to have the wisdom to help those that follow me.

              Thanks

              Comment


              • #37
                Fair enough.
                Last edited by mariaf; 03-20-2010, 08:03 PM.
                mariaf305@yahoo.com
                Mom to David, age 17, braced June 2000 to March 2004
                Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                https://www.facebook.com/groups/ScoliosisTethering/

                http://pediatricspinefoundation.org/

                Comment


                • #38
                  History of scoliosis treatment

                  This is why surgery for scoliosis was begun:


                  http://www.uihealthcare.com/depts/me...treat1920.html



                  http://www.uihealthcare.com/depts/me...scoliosis.html

                  These are museum exhibits.
                  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


                  • #39
                    Originally posted by michael1960 View Post
                    Again, I think, often, inventors are in it for all the right reasons
                    The question is not if they get into it for hte right reasons... medical professionals all do.

                    The real question is what do they do if/when the data don't support the efficacy claims of the invention? Do they honestly admit it or do they do something else? What exactly do they do in these situations?

                    That's where the rubber hits the road.
                    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


                    • #40
                      Originally posted by Pooka1 View Post
                      The question is not if they get into it for hte right reasons... medical professionals all do.
                      That's where the rubber hits the road.
                      No, they don't. I once had a pediatrician actually admit to me that she got into the profession solely for the money. Yes I changed doctors for my daughter after that. I doubt she is the only one with such motives.

                      Comment


                      • #41
                        Originally posted by mamamax View Post
                        No, they don't. I once had a pediatricians actually admit to me that she got into the profession solely for the money. Yes I changed doctors for my daughter after that. I doubt she is the only one with such motives.
                        Any reason why you misquoted me by omitting a line?
                        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


                        • #42
                          No. Just wanted to express the reality that not all medical professionals are altruistic in nature. Sorry you felt misquoted - been there ... don't like it either ;-)

                          Comment


                          • #43
                            I have experience with working with chiropractors through the Clear Institute - my experience was horrendous. I ended up in severe pain and black and blue bruising on my back. Finally after having to threaten getting my attorney involved, I managed to get a full refund. These people take advantage of desperate sufferers like myself of scoliosis. They see we are desperate to try anything before considering surgery, so they make all these promises to you, put you through torturous procedures, only to find out it's not worth the pain and suffering they put you through.
                            Lynette - 44 years old.

                            Pre-surgery thoracic 55 degrees
                            Pre-surgery lumbar 85 degrees

                            Post-surgery thoracic 19 degrees
                            Post-surgery lumbar 27 degrees

                            Surgery April 1st 2010.

                            Posterior spinal fusion from T9 to sacrum.
                            Dr. Cronen at University Community Hospital - Tampa, FL.

                            Comment


                            • #44
                              experience with clear

                              hi all,

                              i read about the first page or so of this thread and cannot help but comment on it. i had personal experience with the clear institute, working with a chiropractor here at home under woggon's instruction. it is not fair to make the claims that these people are making, especially when they have this innate ability to twist words around in order to sound REALLY knowledgeable about correcting scoliosis. to the average person who doesn't know much about scoliosis (except that they have it, or a loved one has it), it's very easy to fall for this stuff. it's exactly what happened to me and my family, even after trying and realizing that the COPES brace was also a sham. i was SO into the idea of clear institute when i first started, and i'm sure the posts i had made supporting clear institute are still posted on this forum. it seemed justified at the time since i was getting correction and my rib hump was somehow not as noticeable. this was all short lived though.

                              what really irks me about this program is that the head chiropractors are getting chiropractors (miles away! states away! even countries away!) to go through with the program despite the lack of evidence. i suppose my chiropractor was too nice and fell in the trap without testing woggon and his colleagues. however, my chiropractor did start to reconsider woggon's credibility when he would suddenly be 'so busy' and 'out of town' when my curve was progressing, despite the intense treatments. my chiropractor needed advice and assistance on what to do with my curve (it was around 60 or so at this point) and no one was able to help him. it was horrible. my chiropractor was literally brought to tears during one of my appointments since he did not know how to help me and we had spent SO much money on this program. a reputable chiropractor with a determined spirit brought to TEARS in front of me in his own office, all because of the clear institute.

                              in the long run, my curve obviously did not improve, (however in the short run i might have gotten a10 degree improvement from xrays taken RIGHT after the treatments..). i had surgery last summer and plan on having a thoracoplasty this summer. of course, i now realize that surgery truly is the only option for correction and i could kick myself for not doing it sooner (i'll be 21 this year). yet everything happens for a reason and i know i learned a lot from the experiences.

                              so bottom line, yes i have tried clear institute and i can only hope that i never undergo something as time consuming and money wasting ever again. i would be willing to explain more or discuss this in a private message if you'd like, seeing as how i just wanted to go ahead and give an overview.

                              Comment


                              • #45
                                Originally posted by curvycakes View Post
                                hi all,

                                i read about the first page or so of this thread and cannot help but comment on it. i had personal experience with the clear institute, working with a chiropractor here at home under woggon's instruction. it is not fair to make the claims that these people are making, especially when they have this innate ability to twist words around in order to sound REALLY knowledgeable about correcting scoliosis. to the average person who doesn't know much about scoliosis (except that they have it, or a loved one has it), it's very easy to fall for this stuff. it's exactly what happened to me and my family, even after trying and realizing that the COPES brace was also a sham. i was SO into the idea of clear institute when i first started, and i'm sure the posts i had made supporting clear institute are still posted on this forum. it seemed justified at the time since i was getting correction and my rib hump was somehow not as noticeable. this was all short lived though.

                                what really irks me about this program is that the head chiropractors are getting chiropractors (miles away! states away! even countries away!) to go through with the program despite the lack of evidence. i suppose my chiropractor was too nice and fell in the trap without testing woggon and his colleagues. however, my chiropractor did start to reconsider woggon's credibility when he would suddenly be 'so busy' and 'out of town' when my curve was progressing, despite the intense treatments. my chiropractor needed advice and assistance on what to do with my curve (it was around 60 or so at this point) and no one was able to help him. it was horrible. my chiropractor was literally brought to tears during one of my appointments since he did not know how to help me and we had spent SO much money on this program. a reputable chiropractor with a determined spirit brought to TEARS in front of me in his own office, all because of the clear institute.

                                in the long run, my curve obviously did not improve, (however in the short run i might have gotten a10 degree improvement from xrays taken RIGHT after the treatments..). i had surgery last summer and plan on having a thoracoplasty this summer. of course, i now realize that surgery truly is the only option for correction and i could kick myself for not doing it sooner (i'll be 21 this year). yet everything happens for a reason and i know i learned a lot from the experiences.

                                so bottom line, yes i have tried clear institute and i can only hope that i never undergo something as time consuming and money wasting ever again. i would be willing to explain more or discuss this in a private message if you'd like, seeing as how i just wanted to go ahead and give an overview.
                                Curvy...

                                There are many sad things about your story. I'm sorry that you got taken yet again.

                                I'm betting that the Clear folks blamed your chiropractor for doing things incorrectly. Like Copes, they'll never admit their program doesn't work.

                                --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

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