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  • Pola, glad your daughter´s surgery is over and went well!
    I hope she has a quick and easy recovery.

    Best wishes from "one of those you might never see in person"

    Ailea
    2004: Daughter diagnosed at 13 L38º. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25º

    Comment


    • Spinecor

      Hello, I am new to NSF and welcome any and all info,suggestions,comments that can be offered. My daugther is 10yrs old and was fitted for the spinecor brace today in Erie PA. I see alot of parents going to new york and montreal for this and wonder, am i missing something? She saw an orthopaedist in cincinnati, which was our second opinion since the first one wanted to have her fitted for the milwaukee brace with the neck ring and everything. I had a hard time believing that was her only option and that nothing else was available until I started looking into other bracing options. I saw spinecor and I was thrilled. I hoped it didint look too good to be true, that it would be able to benefit the same if not better than any of the traditional braces. She has a triple curve however, the second orthopaedist believes the high thoracic curve is congential and that the other two curves are not a result of it. I am confused to hear that one curve is congential and the others idiopathic? Has anyone else ever heard or dealt with that? In any case, I am willing to see if bracing her 40T 34L curves will provide any positive results. In the brace they measure 32 and 21. This is obviously something different and difficult for her to deal with and I mentioned she may be able to find kids her age going through the same thing on forums like this. Does anyone know how she can get in touch with spinecor kids or any scoliosis child to exchange thoughts and questions with? Everyone sounds so helpful and hopeful in here so I look forward to being in here with you all!
      marta

      Comment


      • Try spinekids website she will have fun on that
        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


        • I agree with Christine, Spinekids is a great place for kids.

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

          Comment


          • Christine,

            Didn't you have your appt. in Montreal yesterday? How did it go?

            Melissa
            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


            • Christine,

              I just saw your post. That's great news!!!


              Melissa
              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


              • Thx christine and celia, I will look into that for her!
                marta

                Comment


                • lucas and the spinecor brace

                  hi everyone,

                  i posted awhile back looking into the spinecor for my son lucas 4yrs 9mos old.

                  brief history: diagnosed with infantile scoliosis at 18 mos. braced with a tlso during the day and a charleston/bending brace at night for 1 yr at children's boston, ma. then serial plaster casting for 2 yrs at the shriners in erie, pa with dr. sanders.

                  in june, lucas had a hard brace made in erie that looked a lot like the cast. he finally had a standing x-ray since he had always been under anaesthesia with the casting procedure and therefore, laying down. in brace, he was 20o. considering he started out at 68o/45o, his casting experience has been quite a success. now that he is closer to 5 yrs old and not growing quite as quickly, i really wanted to get him into a brace that would still potentially correct his curve further, but with the help of his own muscles.

                  long story longer, we ended up going to montreal to see drs. rivard and coillard in july, and lucas was fitted with the spinecor. in brace, he is 13o. we go for our follow up appointment this thursday. i am hopeful that we will continue to get good news. i have been very happy with this brace, and lucas moves so well in it. i will post an update when we return.

                  also a response to marta regarding going to erie versus montreal -- since lucas is so young, dr. sanders would not fit him with the spinecor. the youngest they have ever fit is 7 or 8 yrs old. so we did not have the option to go to erie. therefore, we went to the inventor. actually, lucas is officially the smallest child that they have fit for this brace. so my point is, i think that because your daughter is older, and you have the option of going to erie, then you are all set. i love erie although it was quite a trek for us for 2 years from massachusetts, but i would do it all again . . .

                  thanks for letting me ramble!
                  deshea
                  mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
                  spinal detethering due to a tight/fatty filum at 22 mos;
                  tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
                  serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
                  now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
                  and ruby (3 1/2 yrs old and a handful!)
                  north of boston, ma

                  Comment


                  • Hi Desheah

                    My name is Christine we just got back from Montreal and my 6 year old was fitted for the Spinecor. She had a reduction from 33 to 9 degrees. What a wonderful thing. It works better in younger kids. It is very important that it is fit PROPERLY!!!

                    That is why we went to Montreal, The inventers. I have no dought in my mind that my daughter is getting the best treatment availible.

                    Christine
                    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


                    • hi christine,

                      i saw your post on another thread. that is fabulous news about your daughter's correction in the spinecor. i hope that lucas can further correct with this follow up appointment.

                      i agree that for the children who are younger, then it is probably best to go to drs. rivard and coillard, but i do believe that other places can follow the same protocol and make the spinecor work in the older children. i didn't want marta to worry about her decision to travel to erie.

                      deshea

                      p.s. did you take the train to montreal from ct? i looked into it from boston, but it is a long, long trip that way! plus, my sister and brother in law live in northern vermont so we combine it with a family visit.
                      mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
                      spinal detethering due to a tight/fatty filum at 22 mos;
                      tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
                      serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
                      now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
                      and ruby (3 1/2 yrs old and a handful!)
                      north of boston, ma

                      Comment


                      • Wow, I kind of wonder about the whole fitting properly thing now. I'm sure these orthotists know what they're doing but it did cross my mind as to the correct procedure for doing so. It seems hard to believe that the spinecor is helping to manipulate her curves because she is pretty receptive to it and is doing well even though she has not yet worn it for the 20hrs/day that we are slowly working her up to. Did everyone else start their children out w/a few hours a day up until about a weeks time? Is anyone else braced w/curves similar to alyssas? I'm just curious if anyone has had positive results with somewhere near the same degree of her curves.
                        marta

                        Comment


                        • We drove. We drove to Plattsberg NY(Melissa's suggestion) and stayed over night there the drove to Montreal in the AM. Then drove straight home (6 hours not a bad ride )

                          I am sure there are other Doctors that can fit the brace. It is done thru computer program. I think that anyone who has taken the time to even research other possibilitys for treatement is already one up in the game. My pediatrician was almost offended that I did not follow her advice.

                          I have no regrets.


                          After they fit my daughter it just stayed on. No one mentioned easing her into it, it just stayed. Erica has accepted it so far. Not a single complaint. I am sure there will be issues once school starts. (the difference may be age. My daughter is only 6)
                          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


                          • Marta,

                            It's really interesting that the spinecor was prescribed for a congenital curve. How big is the congenital curve ? I guess by wearing the spinecor they are trying to correct the two other curves. Are you seeing Dr. Sanders ? I'm surprised more people don't go to Erie and get the brace for free instead of blowing $6,000.00 to see Dr. Deutchman. I live in Canada and personally I would rather see Dr. Rivard and Dr. Coillard who are the inventors of the brace. The brace only cost us $2,900.00 and it was fully reimbursed by our insurance company. I don't know if it's more of a problem to get reimbursed by insurance companies if one sees a chiropractor.

                            To answer your question, my daughter started wearing the brace 23/7 right away - there was no problem with compliance.


                            Deshea,

                            How did the test go on Monday ??? I got a hold of the vertebral stapling articles from the library. I'm going to bite the bullet and spring for a scanner today.
                            Last edited by Celia; 08-23-2006, 07:38 AM.

                            Canadian eh
                            Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                            Comment


                            • Ohio mom,
                              Rachel's beginning curves were 38/27 out of brace. She is now 20/18 in brace. She wore the brace anywhere from 20 to 23 hours a day from the first day. She loves her brace. With it she is pain free. She had significant pain from her scoliosis. She has worn the brace since January.
                              HUGS,
                              Cheryl
                              God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                              Comment


                              • Celia, yes, I was pretty confused to hear that the orthopaedist believed her top thoracic curve, 34degrees, to look congenital yet not believing it resulted in the other two curves. He tried to explain the way the way resulting curves usually form from a congenital curve and apparently alyssa's didnt so bracing should be effective? I guess there's no harm in trying. She was also found to have an abnormailty with her brain stem upon her xrays from the 1st orthopaedist and has had an mri done, she will be having another done next week to make sure there isn't an underlying cause that should be addressed. Apparently it sits lower than it should but the neurosurgeon said that is actually pretty common and not a concern but 2nd mri will confirm that. It's one thing to try to grasp the scoliosis thing but then to try and understand what else is going on with the whole neurology thing, I'm telling you, I just feel like I'm at a loss sometimes. I try to get online and research and understand the various aspects of everything but theres sooooooo much to try and learn, it's pretty extensive. I'm doing what I can and remain grateful and hopeful about everything.
                                marta

                                Comment

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