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  • Originally posted by Pooka1 View Post
    Don't say that before you read the "elephant" thread. We have some heavy-duty "geniusry" going on there.

    Then you can say that.

    So much nonsense... so little time.
    *sigh* - LOL ... type faster ... I came here before I went there. I could have saved a few IQ points .
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

    Comment


    • Originally posted by txmarinemom View Post
      *sigh* - LOL ... type faster ... I came here before I went there. I could have saved a few IQ points .
      You have enough IQ points to spare. You should share some with certain folks.
      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
        Good one!

        I think orthopedic surgeons are outstanding in their field. They rock.
        Wouldn't that be geologists?

        Ok... sorry I'll stop now.

        Brad
        Surgeries July 26th & August 3rd 1983 (12 years old)
        Still have 57 degree curve
        2 Harrington rods
        Luque method used
        Dr David Bradford
        Twin Cities Scoliosis Center
        Preop xray (with brace on)
        Postop xray

        Comment


        • Originally posted by Qikdraw View Post
          Wouldn't that be geologists?

          Ok... sorry I'll stop now.

          Brad
          Between you and Ti Ed, it's comedy central around hear. I look forward to seeing your posts.
          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
            Between you and Ti Ed, it's comedy central around hear. I look forward to seeing your posts.
            So who's Jon Stewart and who's Stephen Colbert?

            (and I'm REALLY afraid to ask who Lisa Lampanelli is.)
            Surgeries July 26th & August 3rd 1983 (12 years old)
            Still have 57 degree curve
            2 Harrington rods
            Luque method used
            Dr David Bradford
            Twin Cities Scoliosis Center
            Preop xray (with brace on)
            Postop xray

            Comment


            • Originally Posted by mamamax
              Pooka1

              Firstly - i agree, scoliosis is a difficult condition to deal with - whether we are patient or parent, and that - in and of itself - can indeed make life more interesting than would be desired. As a parent myself, i can appreciate your position.
              Thanks for writing that, mamamax. I guess each patient and each parent has to chart their own course. Folks post here for a number of reasons and those reasons don't all match with my reasons.

              You're welcome Sharon - and i do agree with you, each patient and/or parent truly does have to chart their own course .. and all charts/courses do not always match (along with reasons for). While we all share a collective condition - our decisions towards remedy are singular and that sometimes makes for a lonely road. Sharing experience helps.

              Just curious ...

              (1) what exactly is it that you consider woo-woo, fairy dust and/or pink and purple stuff?
              Anything that isn't proven or in the final throes of being proven.

              Anything using a principle that has largely been discounted for good reason.

              Anything that makes claims without controlled studies.


              We don't exactly agree on that is woo-woo and/or pink and purple stuff, because (1) sometimes the truth is not always what the majority agree upon and (2) principles, while they may have largely been discounted for good reason, may still be true (Othello) and (3) truth is not guided by controlled studies but rather by those who observe the truth (Hamlet). So, while you and i do not agree on this point - i wish we could just agree to disagree because sometimes what you have to say is certainly worth listening to (reference: research threads).

              (2) what exactly is it that you consider valid treatment for scoliosis?
              I can only go with what the experts say... watch/wait, bracing, surgery though there is growing admission that the bracing literature is a mess and we are learning that earlier surgical techniques sometimes require revision. That doesn't mean nobody avoids surgery by bracing. It just means it hasn't been shown yet. The only "unscathed" option at this point is watching/waiting and that will remain unscathed until we see enough controlled studies showing conclusively that alternative treatments work better to avoid surgery.

              Bracing - a lot of controversy there .. driven by many things including compliance. Yes, i agree earlier surgical techniques sometimes require revision (and the earlier, the oftener) ... current techniques - well we'll know more about that in 25 years. Watching & Waiting ... not pro active enough for me so i'm bracing, with a brace invented by two surgeons (very well respected). No, there are no long term studies that show it does much for adults outside of pain relief and small cobb angle improvement - given the alternatives .. best for me. Did notice however, at the most recent SOSORT pow-wow that the inventor/surgeons put their reputations on the line by stating unequivocally that their brace does prove to change natural history in adolescents - and that is something i can respect (along with their studies to back up the statement). Schroth and exercises specific to scoliosis have also proven well. Neither current surgical techniques, Spinecor bracing, Schroth, or Seas have benefit of well done long term studies - and i don't plan on waiting 25 years for them to appear. Enough studies do exist to give them all respectful consideration.


              (3) Do you also have scoliosis?
              Not that I know of... my kids likely have a spontaneous mutation case of some connective tissue disorder.

              I doubt I have scoliosis. I do have a two-level natural fusion in my lumbar that is likely a sports injury. It appears to be propagating after being stable for several years... I can't stand for very long these days without it hurting my lower back. And I recognize that pain from when my disc was going.

              wow - i didn't know there was such a thing (spontaneous mutation/connective tissue disorder/scoliosis). I'm a little worried for you - with a natural fusion in your lumbar spine from a sports injury (maybe) .. hope you will get checked as scoliosis can arise also from injury. Sorry about the pain - lots of us recognize that! Thanks for answering - helps - and i hope things go well for you and your daughters.

              Comment


              • Originally posted by mamamax View Post
                wow - i didn't know there was such a thing (spontaneous mutation/connective tissue disorder/scoliosis). I'm a little worried for you - with a natural fusion in your lumbar spine from a sports injury (maybe) .. hope you will get checked as scoliosis can arise also from injury. Sorry about the pain - lots of us recognize that! Thanks for answering - helps - and i hope things go well for you and your daughters.
                They are being monitored for Marfan's. They have some minor characteristics and don't meet the diagnostic criteria now. But if you have the genes, it can "emerge" at any time in your life. ANY TIME. So they have to have the aorta monitoring every year or so their whole life. I say it is a spontaneous mutation because nobody has Marfan's on either side of the family to my knowledge, nobody has had an aortic dissection, etc. etc. and ~25% of the Marfan's cases are known to be a spontaneous mutation. That's pretty high, unfortunately.

                Thanks for the well wishes. I send the same to you, as always.

                ETA: I don't know that they have the gene(s) for Marfan's. The test has some false negatives (but no false positives). That means, you could be negative on the test and still have the genes and develop Marfan's at some point. Because of the false negative rate (~10%), even if the test said they didn't have the gene(s), we would still have to continue the aorta monitoring. So the geneticist and I decided to not get the genetics done. It would have been ~$1,000 (per kid) BTW but covered by insurance I assume.
                Last edited by Pooka1; 06-09-2009, 05:43 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


                • Originally posted by NMFB
                  Hi All:
                  This is an unknown world to me. It is like a different language, the underground, a clique, exploiting, judging, exclusive, secretive, excessive, and rather frightening.
                  I had no idea that such a world existed. Now that I do, I want to leave; this is not for me.
                  I am not able to tell you about me, not that I know who all of you are or if you are who you say you are or that you would believe, anyway, that I am who I am. I do know that I would rather feed a troll than feed some of these greedy practioners who are taking your money, building you up, only to let you down. Sorry I offended so many of you by my guarded profile and secret mission.
                  NMFB
                  Hi NMFB - don't think Dingo was referring to you. We are an interesting group. You are able to tell us about yourself - but so far, you haven't (other than to be a bit secretive yourself). What is your secret mission?

                  Comment


                  • Originally posted by aterry View Post
                    Thank you, MissEmmy, for the detailed information. I'm curious about the differences between Scroth and other scioliosis specific exercise and/or physiotherapy approaches. In the SOSORT briefs both SEAS and DoboMed are mentioned. Do you know whether the differences are a matter of specific exercises or over-all approach? Anyway, best of luck with your exercises and I'll be interested to learn more from you.
                    Hi aterry ~ meant to pass on some information to you earlier & got side tracked, sorry.

                    I wrote the first author on the paper "Adult Scoliosis Can Be Reduced Through Specific SEAS Exercises: a Case Report", received a nice reply and the following web link for information and full reports:

                    http://www.isico.it/approach/default.htm

                    The Textbook:

                    THE EVIDENCE BASED ISICO APPROACH TO SPINAL DEFORMITIES
                    http://www.isico.it/approach/summary.htm

                    Email address for further questions is also within this web page and the first author is very approachable if you have more questions.

                    Comment


                    • Originally posted by christine2 View Post
                      My daughter has had very good results with Spinecor. It is very easy to wear (back bends for cheerleading are a small challenge however she keeps practicing) Our goal with the brace is to keep her curve in the very low, if not non existant range until her growth spurt. If she goes from 1* to 20* in brace in 2-3 yrs we are golden. The chances of that happening are good. The chances of it staying at 1* are small. Heck I would take either. Worst case scenerio we are buying time until something better comes along. I have absolutely no connection with Spinecor other than that my daughter is a patient

                      I would also like to state that I see a chiropractor every couple months for pain management. I have congenital fused vertibrae in my neck- no scoliosis- I have been off pain meds and anti inflammatorys for 15 yrs because of him.
                      Christine2 - your posting makes my heart smile! What a wonderful success for your daughter. And for you! Don't go to a chiropractor myself on a regular basis, but probably should. I know this - whenever i've been in trouble big with my back, its always been a chiropractor that has helped me & in fact my spine specialist recommended the chiropractor i see for my Spinecor brace. Wishing you both much continued success!

                      Comment


                      • mamamax

                        Thanks for your well wishes! My chiropractor has helped me in some tough times. He has fixed a few bulging disks, pinched nerves and milked out some nasty muscle spasms. I went thru 2 doctors before I found the one right for me.
                        from CT, USA
                        6 year old daughter diagnosed 7/06 33* T9

                        Spinecor 8/06 - 8/2012
                        8/06 11* 3/07 5*-8/07 8*-2/08 3*
                        10/08 1* 4/09 Still holding @ 1*
                        10/09 11* OOB 4/10 Negative 6*
                        10/2011 Neg.11* IB 11yrs old 0 rotation
                        4/2012 12* OOB 0 rotation
                        8/2012 18* OOB for 2 weeks. TSLO night time
                        2/2013 8* OOB 3 days TSLO nightime
                        3/2014 8* Out of Brace permanently

                        Comment

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