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  • #31
    thanks for the reply!

    I think your right 1st see an orthopedist specializing in scoliosis and have the radiographs to rule out and know what your dealing with.

    It is important to do the research, and it sounds to me that exercise and the brace are working for you.....it would be interesting to see the long term results.
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love

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    • #32
      December 8th Adjustment

      Sorry for not posting back when I had this visit. It was pretty routine except for the new radiation free look see:http://i41.photobucket.com/albums/e2.../dicamscan.jpg

      Each adjustment is like a "tightening up" for lack of better explanation - and with this adjustment I actually was feeling a little soreness as days went by. But that discomfort has gone away.

      Something may be changing. I worked 2 hours overtime (per day) this week, and hence spent 2 extra hours in brace (daily). On the fourth day my back felt completely different, in a very good way. I don't know how to explain it other than to say I feel like something has "un-kinked" in the thoracic and lower lumbar regions. So I'm going to go ahead and increase my wearing time by 2 hours daily.

      Have an appointment with my orthopedic specialist (who prescribed this brace for me) in March, for a full set of xrays. Nervous, about that - hope there won't be any progression seen - and a part of me also hopes that an improvement may be seen.

      Closing in on the first year of a two year protocol :-)
      Last edited by mamamax; 12-31-2009, 06:29 PM.

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      • #33
        March 2010

        Busy week. On Monday, I had an appointment with my orthopedic specialist for a full set of follow up xrays which are taken every two years in order to track what's going on. The cobb angle reading this date showed improvement - after two days out of brace.

        Today, I had a brace adjustment and a Formetric scan (attached - top image from December, bottom from today). I had emailed Dr. Lamantia a digital copy of Monday's xray taken from my camera. He had a truly fancy piece of equipment which assists in reading a computerized digital image. While both he and the orthopedic specialist had used the same anchor points - Dr. Lamantia did not interpret the cobb angle improvement to be as significant (in terms of numbers) as did the ortho.

        I've come to understand, at least in my case - that cobb angle is not as important to me as how I feel (though it is possible that one may effect the other). I have felt an improvement over the last three months that I of course could not explain in medical terms (given my lack of medical background). The Formetric image shows a significant improvement in trunk balance - so I think that is what I have felt. Learned this week that cobb angle measurement is truly not an exact science and that much more goes into interpreting this condition, which is truly mysteriously unique unto each patient.

        Today's brace adjustment was done with the hopes of improving the pelvis/hip area which, as can be seen, is definitely needing some rehabilitation.

        Spent about two hours with Dr. Lamantia discussing many things. The NYC office offers an intensive Schroth workshop and in the future such workshops may be offered in the satellite locations. I look forward to that - in the meanwhile, my search for a local PT with Schroth experience continues. And I'm now more focused on investigating improving lung function as I tend to think this is important for everyone as they age. I have noticed that I can now expand my ribs at will, something I could not do last April.

        Pain levels continue to decrease. I cannot express how truly wonderful it is to wake up without pain and to go about my daily routine near effortlessly when compared to April of last year when I was in horrific pain near 24/7. I remain deeply grateful for the efforts of Drs. Lamantia & Deutchman in the area of adult bracing, and of course for the work of Drs. Rivard (SRS surgeon), and Dr. Coillard (brace inventors).
        Last edited by mamamax; 03-04-2010, 08:09 PM.

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        • #34
          Dr Obachei reported to prescribe and fit SpineCor

          Did'nt want to start a dedicated thread, but if this post to another forum is to be believed, Dr. Obachei himself is using the SpineCor Brace for patients (here pediatric is highlighted). Apparently, he fits them too! Maybe everyone else already knows this, but I sure didn't. Note though, that he acknowledges that they don't help everyone. It seems he has specialized criteria even to fit them, unsure if they are SpineCor's or his.

          Below is the forum. If you want to see the post I recently received by email, it should be readily available there.

          Scoliosis-Medical@yahoogroups.com
          The poster's name is Kathy but her online name may be Khanley40. I was going to reproduce her letter, but decided it might be somehow an invasion of privacy. IF the Search Engine is working (sometimes the Yahoo groups can be wonky), anyone interested should be able to find the recent post.
          Not all diagnosed (still having tests and consults) but so far:
          Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
          main curve L Cobb 60, compensating T curve ~ 30
          Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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          • #35
            Post Treatment Comments

            Bracing treatment ended for me after approximately 13 months. At fitting the standard protocol for both adolescents and adults was 2 years. I've noted that manufacturer has adjusted this time period for adults to 14 months.

            I have been out of brace for some six months. Last xray shows minor cobb angle improvement (nothing worth making a case study out of). The greater reward has been in the area of pain management and postural rehabilitation. Prior to treatment my posture was that of an old lady (wait a minute, I am an old lady!), and pain levels 24/7 were enough to make me seriously contemplate surgery. In fact, I did consult with a well known SRS surgeon just prior to learning about Spinecor for adults.

            Post treatment, the pain levels are only episodic with over exertion. This has been maintained six months post treatment and I can not detect any pain progression. Posture remains rehabilitated from 4'9" to 5' (evening measurement, morning is slightly higher).

            Since beginning treatment I've come to learn that adult bracing is not such a new thing in Europe, and have even had the privelidge of corresponding with other adults who have tried it, with more cobb angle improvement, in conjunction with Schroth therapy. In Europe, this method is under Weiss (or those trained by him), with a different type of brace. So that is interesting, and I hope we see more of this in the future in the US.

            Mine is just one story - documented evidence is limited and seems surrounded in controversy. At the time I began treatment, Spinecor was my only option (given time and resources) outside of surgery. I certainly can't say this treatment will have avoided surgery in the future (no one can), but I can say it avoided surgery for the present (based on pain and magnitude of curvature).

            I've learned much over the course of these many months, regarding many things. Mostly, that my journey is not over, given my age, etc. My next step will involve Schroth therapy and for that I will look to the expertise of Bea Torres.

            Special thanks to Joseph O'Brien for allowing me to share my story.

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            • #36
              Thanks for the update Mamamax. I'm glad to hear it helped your pain. It sounds encouraging and perhaps others will benefit from you sharing your personal experience.

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              • #37
                Thanks for sharing! It definitely gives me hope and motivation knowing that adults have benefited from conservative treatments.
                1993, Age 13, 53* Right T Curve w/ Left L compensatory
                2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                http://livingtwisted.wordpress.com/

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                • #38
                  I'm glad the bracing helped you mamamax. Amazingly enough, they used to use bracing for adults here in the US also. Apparently my grandfather's sister used a brace all the time as an adult because she was so curled up from scoliosis. Yes, my father's family has all the double-jointedness. Apparently we're all just too evolved to wear braces anymore.

                  I'm glad you were able to tell your story also, mamamax. It's really pretty amazing you were able to. Most of the people who are not cheerleaders for surgery have been driven off, even fireflymd. (I hope your daughter is doing well, if you are still reading, firefly.)

                  No doubt this site is supported by donations from medical device companies which would explain the pro-surgical slant.

                  Best of luck to you with Schroth, I am actually considering going with my daughter to Italy and ISICO and find out about SEAS exercises, in the meantime I'm going to show her how to do sideshift exercises. We'll see what happens.

                  Hugs to you mamamax. :-)

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                  • #39
                    i seriously doubt that statement about this forum being supported be any medical companies of any kind! i find the suggestion very offensive...

                    i have never felt pushed to have surgery...by anyone on this forum...EVER...in any way..,period!
                    i don't see any suggestions that any of the so very pro bracing or pro Schroth people are on anyone's payroll...and it would be just as likely, in my opinion.

                    jess

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                    • #40
                      Balletmom is a conspiracy theorist.
                      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


                      • #41
                        Originally posted by jrnyc View Post
                        i seriously doubt that statement about this forum being supported be any medical companies of any kind! i find the suggestion very offensive...

                        i have never felt pushed to have surgery...by anyone on this forum...EVER...in any way..,period!
                        i don't see any suggestions that any of the so very pro bracing or pro Schroth people are on anyone's payroll...and it would be just as likely, in my opinion.

                        jess
                        Why be offended? It would be a normal expense for companies like that. It is the way our system works. I believe the Australian scoliosis site even states that they are funded by one of the medical device companies, Medtronic, if I remember correctly.

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                        • #42
                          Originally posted by Pooka1 View Post
                          Balletmom is a conspiracy theorist.
                          A conspiracy when this is the way a capitalist economy runs. LOL. Did you immigrate from Russia or something recently?

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                          • #43
                            Originally posted by Ballet Mom View Post
                            A conspiracy when this is the way a capitalist economy runs. LOL. Did you immigrate from Russia or something recently?
                            Yes.

                            Love,
                            "Svetlana"
                            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


                            • #44
                              Actually I meant "Da."
                              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


                              • #45
                                Originally posted by Pooka1 View Post
                                Yes.

                                Love,
                                "Svetlana"

                                Bingo. Time to go get deprogrammed.

                                Comment

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