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Cheneau Brace combined with physiotherapy

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  • Cheneau Brace combined with physiotherapy

    I found some posts on here about the Cheneau brace. I am wondering if anyone has had success with this brace with larger curves when combined with a good physiotherapy program? We are hoping our daughter can get the Spinecor brace but if she can't we need a back up bracing plan and the Cheneau brace - even the program in Germany or the U.S. looks like another option. It would be good to hear if someone had success with this brace with curves in the 50 degree range.
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  • #2
    http://www.skoliose-info-forum.de/index.php

    this is a german forum, but there is a section for english speaking people.

    thry argue very hard for the quality of braces of 2 specific orthotists, and results of initial correction seem very good, though there is little in the way of final outcomes. also, the message you get is that it is not easy, and for a good correction you will have to suffer!

    Comment


    • #3
      Gerbo:
      Oh goodie - my daughter loves to suffer!!! - just kidding. She wasn't too good at wearing the two night braces.
      Thanks for the link I will check out the forum.
      Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

      Comment


      • #4
        Let me know if u have any questions.
        I wear the cheneau brace and its is very good..
        doesnt disable me at all! im able to do everything!
        Btw. i went to dr. rigo in barcelona to make by brace&&
        i will be going there next month! hoping for good news!
        My name is Rotem
        I am 13 and in 7th grade
        Started with 2 curves:
        34º Therotical
        50º Lumber
        I currently wear a Cheneau Brace
        Got my 1st on Nov. '06
        Got my 2nd on Nov. '07
        Just got my 3rd one today (May7 '08)
        and im still trying to get used to it
        Hoping I won't need surgery
        I live in South Florida
        3rd check on November 17,2007,
        Got an X-ray done Feb. 5th, with EXCELLENT news!
        30º Theoratical
        37º Lumber
        4th check on May 7, 2008

        Comment


        • #5
          Hi Rotem:
          I am glad to hear you are able to wear your brace without any difficulties and still do everything. Hope you have a good appointment next month and your curves are the same or lower.
          Do you know if your brace is a traditional Cheneau brace or the Cheneau light version?
          Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

          Comment


          • #6
            thanks! im not 100% sure.. all i know that it is a cheneau brace! =]]
            My name is Rotem
            I am 13 and in 7th grade
            Started with 2 curves:
            34º Therotical
            50º Lumber
            I currently wear a Cheneau Brace
            Got my 1st on Nov. '06
            Got my 2nd on Nov. '07
            Just got my 3rd one today (May7 '08)
            and im still trying to get used to it
            Hoping I won't need surgery
            I live in South Florida
            3rd check on November 17,2007,
            Got an X-ray done Feb. 5th, with EXCELLENT news!
            30º Theoratical
            37º Lumber
            4th check on May 7, 2008

            Comment


            • #7
              go to my site and read my full story on my cheneau brace and dr. rigo in barcelona!
              My name is Rotem
              I am 13 and in 7th grade
              Started with 2 curves:
              34º Therotical
              50º Lumber
              I currently wear a Cheneau Brace
              Got my 1st on Nov. '06
              Got my 2nd on Nov. '07
              Just got my 3rd one today (May7 '08)
              and im still trying to get used to it
              Hoping I won't need surgery
              I live in South Florida
              3rd check on November 17,2007,
              Got an X-ray done Feb. 5th, with EXCELLENT news!
              30º Theoratical
              37º Lumber
              4th check on May 7, 2008

              Comment


              • #8
                Me

                Hi everybody I am the new kid on the block!

                My name is Sophie, I am NEARLY 12 years old (my birthday is on Columbus Day, 10/8 [!!!!!!!!!!!]), and I live in Westchester/NYC. I am Chinese, about 100 lbs, and 5'6.5" (which is HUGE for my age, people think I am 16 or something)
                I play a lot of sports, includin tennis and swimming. I have been swimming since 3 years old because I had asthma and swimming completely obliterated it from my life.
                I was diagnosed with scoliosis on July of this year with a T45 curve and a L30 curve. The doctor referred us to a scoliosis surgeon and he recommended surgery. My family and I, however, decided to wait and see what would happen. In August we got another x-ray and this time my curves were T54 and L35. I was really scared and worried because our surgeon pressed me to have scoliosis ASAP in late September 07.
                My mother spent countless sleepless nights searching the web, looking for an alternative treatment(s). Soon she found a man named Dr. Manuel Rigo in Barcelona, Spain. He teaches the Schroth method of physical therapy.
                This year I started at a new private school in NYC so we could not go to Barcelona, but my mother e-mailed Dr. Rigo and the kind soul e-mailed her back during his vacation! What a nice person, I would love to meet him someday. He referred us to three people he taught who are currently in the US: Luke Stikeleather in Fairfax, VA, who makes Cheneau braces and Beth Janssen and Patricia Orthwein in Stevens Point, WI, who teach the Schroth method of physical therapy.
                Luke made a Cheneau brace for me in August and so far everything is going well.
                Just last week my mother and I went to Wisconsin to see them. They are a truly wonderful pair along with their co-workers Jan and Julyane. It is a great alternative to going to Barcelona if you can'y go to Spain. They even booked us a great hotel five minutes from their clinic, Scoliosis Rehab. Find out more at scoliosisrehab.org
                Well, I am back in NY now but I still don't want surgery. If there is anything anybody knows please write on this forum or contact me:

                E-mail: sophiezp@yahoo.com
                AIM (but I am rarely on): sophiezp888

                Thank you so much guys!

                Comment


                • #9
                  Hi Sophie:
                  Welcome to the forum. I am new to the forum too. I have learned so much from this website in the past few weeks.
                  My daughter's curves are about the same size as yours. We are interested in learning about the Schroth scoliosis treatments so please keep us posted on your progress. Did you get a brace yet? Have you started the physical therapy yet?
                  For the past few weeks my daughter has been doing the Pettibon exercises everyday and seeing her chiropractor three times a week, and we are thinking about getting a Spinecor brace.
                  Ruth
                  Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                  Comment


                  • #10
                    Cheneau brace & blood test for bracing efficacy

                    Sorry for getting back to you earlier. Sophie is my daughter. She has very tight daily schedule and does not come on to the forum regularly.

                    She has been wearing Cheneau brace since mid July and her correction is 39T/31L (one month in brace) compared to 54T/39L. The result is just OK. I was told that there are 2 Cheneau brace makers in US. If you can afford, better get a good brace done in Europe, as we just can not afford to loose the time. I did not know then.

                    We went to WI to learn Schroth as I think that today most people do some kind of exercises anyway. Then Schroth can be the one for her. I aslo read an article somewhere, saying that exercises works better for the poeple who did not exercise much. I have the feeling that may be true.

                    She will take out brace x ray in mid December to see her true curve. If it works for her, I will get a good brace from Europe.

                    I just contacted a molecular biologist – Alain Moreau, at St Justine Hospital in Montreal. His lab has several blood tests that can identify scoliosis levels and condition, and are under clinical trial. I will take my daughter to take a test which is used to predict the efficacy of brace treatment. It is may not be something 100% you should rely on, but I want to be better prepared. Dr. Moreau is very kind and quick in responding emails. He can be contacted at alain.moreau@recherche-ste-justine.qc.ca.

                    I think it is very good that we can share our experience with each other. We are all exhausted especially psychologically as there are very few reliable information resources out there. I was recommended to a professional by another professional on this forum for a comprehensive evaluation. We went and were very disappointed. He was unable to answer any specific question in terms of brace type, treatment options etc. I was told that he only started seeing scoliosis patients in the past a year or so and had seen about 7 or 8 patients, some got better some got worse. I am not happy with the person who made the recommendation. Lucky it was $200 not $3000.

                    I do not believe any chiro or exercises can make change to the curve permanently to most scoliosis cases (although it did happen to a very few lucky people). If it does in the short term, it is obvious to me that it will take the same amount of work to maintain the result. However I can not convince myself to send my daughter to surgery without proof that these methods do not work for her.

                    We have visited several surgeons and one of them insisted having surgery within 3 months time who also denied any post-op complications. The others are less pushing as they think 50/60/70 degrees curve does not make huge difference in surgical result. They also do not believe it is necessary to correct to or close to 100%.

                    The reason I do not like the surgery is not the 10% of complication rate in the short term, it is also in the long term. In 20 years time, the kids in teens now will only in 30s and may need 2nd surgery. It is unthinkable. I hope my daughter can hold as long as she can. I also hope there will be better treatment options available in the future.

                    Since my daughter was diagnosed with scoliosis, I have discovered some people with severe (50 degree plus), without surgical treatment, live well toady in their 50s, and healthy, no back pain. Being alive is one thing, having a life is another.


                    Originally posted by rtremb
                    Hi Sophie:
                    Welcome to the forum. I am new to the forum too. I have learned so much from this website in the past few weeks.
                    My daughter's curves are about the same size as yours. We are interested in learning about the Schroth scoliosis treatments so please keep us posted on your progress. Did you get a brace yet? Have you started the physical therapy yet?
                    For the past few weeks my daughter has been doing the Pettibon exercises everyday and seeing her chiropractor three times a week, and we are thinking about getting a Spinecor brace.
                    Ruth
                    Last edited by clarexp; 11-12-2007, 09:23 PM.
                    Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

                    Comment


                    • #11
                      Clare, well said-I share many of your thoughts! I had read somewhere about the clinical blood tests by the doctor in St. Justine. Did he say what the requirements are to be included in the trial? (i.e. a curve of a certain size or a certain minimum age?)

                      Thanks! Jill
                      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


                      • #12
                        If you read all of my old posts over the past two years, you will see that I am a Mom who wanted to do anything to avoid surgery for her daughter. But once her curves were in the 50's and Dr. Rivard, Dr. Coillard (never in a rush for kids to have surgery) and two surgeons in Phila all agreed that Nicole had to get surgery, I had to do what was right by her. I have read too many posts from the women in their 20's, 30's, 40's and up who are now facing surgery for the first time when they should have had surgery long ago. There are some advantages to doing it now including the fact that kids recover and heal much quicker than adults. Nicole has been off major pain meds since 10 days post-op and was back at school full-time before 6 weeks. She had two loving Parents to take care of her and did not have babies she couldn't lift, a job she couldn't go to, or any of the adult responsibilities that come later in life. Many of the adults who have this done are on pain meds for a long time and healing very slowly.

                        Nicole's curves were getting worse with each passing week. Worse yet, her rotation was getting worse. Her curves were also getting stiffer as the months passed.

                        If you ask anyone who knows me, our mantra for the past two years was "Nobody is touching my daughter. She will not get surgery."

                        But there came a time where there was no choice and we had to do what we didn't want to do.

                        I hope you are able to avoid surgery for your children. But if there comes a point where everyone is in agreement that it is the only option, it really does seem better to do it now before the curves get really rotated and stiff and before the kids have huge responsibilities.
                        Melissa
                        From Bucks County, Pa., USA

                        Mom to Matthew,19, Jessica, 17, and Nicole, 14
                        Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                        Comment


                        • #13
                          Blood test

                          Jill,

                          It is in clinical trial therefore it is free. They have 3 different types of tests. It is the best if you can write to him and give him the history of your child, he will tell you which test to take.

                          He is not a MD. You go straight to his lab. He has a lady arranging appointment for him and you can request to see him have a little chat. I think his work is very interesting and extremely important and will benefit many many people in the years to come if they are proven successful. He mentioned that the tests are expecting to be available commercially at the end of 2008.

                          Clare




                          Originally posted by jillw
                          Clare, well said-I share many of your thoughts! I had read somewhere about the clinical blood tests by the doctor in St. Justine. Did he say what the requirements are to be included in the trial? (i.e. a curve of a certain size or a certain minimum age?)

                          Thanks! Jill
                          Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

                          Comment


                          • #14
                            When to have surgery?

                            I agree with you, Melissa. Thanks for the advise. We are also seeing some surgeons in/near our area.

                            There is one thing I am not very sure about. Is it definitely better to do the surgery now or 5/10 years later, as in 10 years time, there could be something new or different way of surgery. Looking back 10 years, the implication rate was higher.

                            Our daughter is involved in making all these decisions. She reads some of the medical papers I found and we discuss.

                            What also puzzles me is, some people can live well with scoliosis. The people that I mentioned in my earlier post are true. A wife of my husband's colleague, from Spain originally, in her 50s, swims everyday; a relative of my close friend, a man in 80s, goes ski every year, (he has visible hump on his back so I would say at least 70 degrees); the brother of a mother in my daughter's school, in his 50s, active in all sorts of sports.

                            It is hard to ignore their existence. I can only hope that my daughter can be that lucky. But I do prepare for the worst - having surgery June 2008, so she can have enough time to recover.

                            I read some of your posts as well as others. You are the ones inspiring me to try and flight, before accepting the surgery. My best regards to you and your family.


                            [QUOTE=MATJESNIC]If you read all of my old posts over the past two years, you will see that I am a Mom who wanted to do anything to avoid surgery for her daughter.
                            Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

                            Comment


                            • #15
                              I think a lot depends on the risser. My daughter's risser was a 0, so the main goal of surgery was to stop the curves from progressing. Straightening out her back is the bonus. I always think about what great thing may come along in the future that would have been better for Nicole. In some ways, our situation was easier than for others. We had no choice. We would not have been responsible Parents if we would have not listened to all the doctors who said these curves must be stopped. Her health would have been eventually jeopardized. Believe me, I still worry about her. But we had no choice.
                              Melissa
                              From Bucks County, Pa., USA

                              Mom to Matthew,19, Jessica, 17, and Nicole, 14
                              Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                              Comment

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