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  • In scientific investigations there is something called “investigator bias”.

    “From the very outset, investigator bias can influence the general attitude towards a research project. Research is at its best when it tests (or, more precisely, falsifies) hypotheses. The biased researcher, however, has preconceived ideas and is likely to approach a project to 'prove' a point. For example, a researcher who is convinced of a particular treatment or, worse, has a vested interest in it, might misuse science to demonstrate the efficacy of his therapy.”

    If for no other reason than this potential bias: if your child is being treated by a researcher with a vested interest in his product, you should make every effort to INDEPENDENTLY evaluate the results that are claimed to be achieved.

    I did this with the in brace results supposedly achieved by my daughter and was horrified and infuriated with what I found. I was horrified thinking that perhaps our situation might not be unique (though I acknowledge that it may be), and I was infuriated because had I not discovered what I believe to be (I’ll use a nice word) the “bias”, my daughter would have had to bare the burden of wearing a brace NOT likely to help her.

    Have your child’s xrays evaluated by a qualified, independent, and unbiased expert. That is your right. I would also suggest that it is your responsibility.

    Comment


    • Cd!!!!!!!!!!

      CD!!!

      We missed you didya miss us didya didya didya?!?!?!?!??!?
      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


      • Hi Sharon, I havent had a chance to stop in and see much of what is going on but I saw the recent discussion and felt that I should at least offer my opinion on the matter.

        I feel it is important to (as Reagan said regarding arms reductions) "Trust but verify"
        I've been busy applying what I learned here regarding clinical trials to biotech investing. I am currently involved with a stock whose drug was tested in a cross-over trial. There are challenges in such trials and I know BRAIST was recently modified to allow cross-over. I am wondering how the trial is going and how they plan on dealing with the statistical analysis.

        My daughter is doing great. We go for an appointment in early August. I feel comfortable with our decision: if she progressed (and she may have) we will deal with it knowing that she could have progressed irregardless of bracing and all the evidence we had available at the time suggested her skeletal maturity would have limited any potential bracing efficacy.

        I dont want to clutter up the thread. I hope everyone is doing well and all are acheiving great success with their chosen treatment, whatever it may be.

        Comment


        • Originally posted by concerned dad View Post
          In scientific investigations there is something called “investigator bias”.

          “From the very outset, investigator bias can influence the general attitude towards a research project. Research is at its best when it tests (or, more precisely, falsifies) hypotheses. The biased researcher, however, has preconceived ideas and is likely to approach a project to 'prove' a point. For example, a researcher who is convinced of a particular treatment or, worse, has a vested interest in it, might misuse science to demonstrate the efficacy of his therapy.”

          If for no other reason than this potential bias: if your child is being treated by a researcher with a vested interest in his product, you should make every effort to INDEPENDENTLY evaluate the results that are claimed to be achieved.

          I did this with the in brace results supposedly achieved by my daughter and was horrified and infuriated with what I found. I was horrified thinking that perhaps our situation might not be unique (though I acknowledge that it may be), and I was infuriated because had I not discovered what I believe to be (I’ll use a nice word) the “bias”, my daughter would have had to bare the burden of wearing a brace NOT likely to help her.

          Have your child’s xrays evaluated by a qualified, independent, and unbiased expert. That is your right. I would also suggest that it is your responsibility.
          Welcome back CD! You have been missed :-) Excellent posting. Personally, the very fact, and it is a documented fact, that "readings" can vary as much as 5 degrees (or more) between readers - and even vary with the same reader .... annoys me. It's 2010, we should have a method of reading cobb angle measurement that is an exact science. But we don't and I find that very frustrating. Agree that one has a responsibility to include an independent unbiased expert - In my case that expert is my orthopedic specialist. So far, readings match - which almost seems an oddity.

          While you've been absent for awhile - you've not been forgotten and maybe like a lot of others, I've kept you and your family in my thoughts. Thanks for the well wishes you posted for us. I'm ready to wean out of brace and plan a personal program to maintain the benefits I've found. Another member here (Daily Strength) has recommended a book that is proving valuable - maybe you will want a copy for your daughter: Curves, Twists and Bends: A Practical Guide to Pilates for Scoliosis by Annette Wellings and Alan Herdman. The publication is new (this year) and the author who is my age, offers some very good tips for self management.

          Good, no - Great, to see you!

          Comment


          • Montreal Trip

            When I found out that my 3 young daughters had scoliosis I did alot of research on braces, doctors, and facilities. Dr. Noonen a world renowned Orthopedist when he met our then 5yr old only focused on the fact she would have a fusion its a question of what age. Not what I was going to listen to! Of all the places I went Dr. Sandes and Shriner's Erie, PA were the best. We did get the Spine Cor brace from there for our then 5 yr old and did not get good results. She has been back in the Spine Cor brace for 1 1/2 yrs with Dr. Rivard and things are great. At one point she was a 52 degree thoracic and last week we came back from Montreal and she is at 20! She went down 9 degrees in 6mo and had a 3cm growth spurt. *We live in Wisconsin and we fly into Burlington VT and drive across the border appx. drive 1 1/2 hours. The Holiday Inn on Williston blvd. give us a *hospital rate of $79/night and its right next to the hwy.

            Comment


            • Originally posted by cherylplinder View Post
              Hello Spinecor users
              I haven't been on the board in a couple of years but tuned in today and saw some of MJB's confusion.
              My daughter had surgery in Feb of 2009. The last year, she wore the Cheneau brace.
              Dr. Rivard told me he measures the same 2 vertebrae every time he measures a curve from diagnosis to end of treatment.
              Other orthopedics measure the Worst 2 angles to access the curve.
              That is one reason Dr. Rivard gets such different readings on his measurement of the curve.

              Best Wishes

              Cheryl
              I'm sorry to hear that your daughter needed surgery... We have gone to Hospital for Sick Children in Toronto this week and on June 9th my daughter will get casted to make a mold for a Cheneau Brace. I don't know anything about the Cheneau Brace, so I am really worried and nervous.
              Marlowe mom to Halle (age 11)
              Diagnosed January 11/08
              In Spinecor Brace for 2 1/2 years

              In the Cheneau Brace for 10 months
              Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

              Surgery Scheduled at Sick Kids for May 16, 2011


              http://hallesscoliosis.blogspot.com/

              Comment


              • Good Luck MJB. From the stories that others have posted, it seems like the Cheneau is pretty comfortable for a hard brace. ....not that any brace is actually comfortable, but you know what i mean.

                Let us know how it goes!
                daughter, 12, diagnosed 8/07 with 19T/13L
                -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                Comment


                • Thanks Jill!
                  Marlowe mom to Halle (age 11)
                  Diagnosed January 11/08
                  In Spinecor Brace for 2 1/2 years

                  In the Cheneau Brace for 10 months
                  Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                  Surgery Scheduled at Sick Kids for May 16, 2011


                  http://hallesscoliosis.blogspot.com/

                  Comment


                  • Hi all,

                    Back for my annual visit, checking up on you all . Marlowe, sorry to hear about Halle's progression but delighted to hear your other news!!

                    We had Immi's 3 year check-up last week - I don't know whether you'll remember but last summer her curve had jumped to 35 degrees in brace and we were going to try to persuade her to be a little more compliant... It didn't work; Immi has not worn her brace since before Christmas - her heart wasn't in it and nor was ours.

                    X-ray this summer showed a curve of 47 degrees, pretty much what we'd expected. Her consultant, who we trust and are 100% happy with, has said that once it gets over 50 degrees (pretty much a certainty) surgery is unavoidable. He is happy to leave the timing up to us - actually up to Immi - and has explained that he will get the same results with the same level of risk at any time during her teenage years. He will therefore wait until Immi says she's ready, which he suggests will be around 15 years old.

                    I remember first coming to this forum 3/12 years ago as an emotional wreck, terrified of what the future held. I am truly grateful to all of the wonderful friends I have made, many of whom have now moved on, for helping me through the early days. I am also extremely grateful that we found and used Spinecor for 2 1/2 years - I believe that this delayed the inevitable by enough time to buy her time to grow.

                    Good luck to you all.

                    Laura x

                    ps This sounds like goodbye but I'll be back!
                    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                    Surgery due to take place early December 2011 at the RNOH, England.

                    Comment


                    • It seems that both you and Immi are at peace with having a surgery - that's great!

                      Yet, it's one more story with SpineCor not working, but buying time - I feel that we are in the same boat unfortunately

                      Good luck to you and Immi!
                      from Boston, MA, USA

                      9 y.o. daughter
                      07/08 - diagnosed with L23
                      10/08 - wait and see: L25
                      11/08 - Spinecor: L15
                      01/09 - Spinecor: L15
                      06/09 - Spinecor: L14
                      11/09 - Spinecor: L14
                      04/10 (Out-of-brace): L30-T30
                      08/10 - out of Spinecor
                      01/11 (Out-of-brace): L42-T30
                      02/11 - Rigo-Cheneau and Schroth

                      Comment


                      • Wow, that was quick!

                        Thank you for your good wishes - at peace? I guess so... But I wish we didn't have to be.

                        I realised I forgot to say that Immi's brown patches (pressure marks??) have completely disappeared now.

                        And I want to say again that this and the other (UK) forum have helped me remain sane. To be able to communicate with people experiencing the same thing, with people who understand what you're going through because they're going through it too, helps beyond measure.

                        Edited to add that, for us, SpineCor has worked... Our consultant was always honest with us about the limited evidence of success and statistical reality of having a 9 year-old with a 38 degree curve. We did get a bit carried away occasionally, but deep down have always known that surgery was inevitable.
                        Last edited by RugbyLaura; 07-07-2010, 11:42 AM.
                        UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                        10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                        Surgery due to take place early December 2011 at the RNOH, England.

                        Comment


                        • spinecor results

                          Hello (haven't posted in a long time) my daughter's out of her brace, she was at a "20" five years ago when we first got her braced, and now she's 16 years old, 12 inches taller, and her curve is 28 . . . so, I believe, we've been successful with the Spinecor brace.

                          p

                          Comment


                          • That's great Pat! I think the key here is that you caught it early on and you were proactive about it. Congrats to your daughter, sounds like she's going to be fine.

                            Comment


                            • Laura,

                              Great to hear from you again!

                              Sorry about Immi but it's good that she will have time to decide.

                              Best regards,
                              sharon
                              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


                              • Hello everyone
                                I also believe my daughter is a success story. We started using Spinecor to buy us time. I don't know what the future will bring she may still need surgery but we now have time. She was 33* @ 6yrs old. She is now a -6* @ 10yrs. She is completley compliant w/ bracing (I am sure that will change soon) But we are in the best position we can be in for the growth spurt.

                                I had to chime in, miss you all
                                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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