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  • great Spinecor info with Scoliosis research society

    Originally posted by Celia Vogel
    There is also the 40th annual SRS presentation by Dr. Rivard at 8:48 a.m. which can be viewed at the following link. Once again, the results are spectacular.


    http://www.istreamplanet.com/srs/def...&conf=3&edi=12
    This was great. I watched at least 3 times with my husband and caught more each time on little bits of info. Great. Thank you.
    Shirley
    Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

    Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

    Comment


    • We are going with Spinecor scheduled to go March 14th. We appreciate everyones responses. Thanks Lori especially. I am still trying to understand vestibula testing and importance so am researching for anyone that might have useful information to provide it would be appreciated. Thank you!
      Shirley
      Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

      Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

      Comment


      • Hi Mom,

        I know this is a really hard time. The information that you need to know and process to make these decisions is overwhelming. This group of parents is as well informed a group as you will find. They know more than our first ortho and most pediatricians!

        My daughter saw Drs. Rivard and Coillard in Montreal at St. Justine's on January 24th to get the Spinecor brace.

        I will say that Dr. Rivard, who walked us through the whole experience and willingly answered my questions with tremendous compassion and knowledge, inspired great confidence. It was obvious that helping these children is his life, and he said as much when I thanked him for his kindness.

        We haven't had our first follow-up yet, so I have no results for you.

        Hugs to you and your sweetie pie!

        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


        • Mom 37,
          Where are you going for your Spinecor? We go to Dr. Deutcman in N.Y.
          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


          • Spinecor

            Thanks. We appreciate all feedback. Let me know how it goes. We are going to New York but Montreal really isn't that much further. Thanks.

            Originally posted by cherylplinder
            Hi Mom,

            I know this is a really hard time. The information that you need to know and process to make these decisions is overwhelming. This group of parents is as well informed a group as you will find. They know more than our first ortho and most pediatricians!

            My daughter saw Drs. Rivard and Coillard in Montreal at St. Justine's on January 24th to get the Spinecor brace.

            I will say that Dr. Rivard, who walked us through the whole experience and willingly answered my questions with tremendous compassion and knowledge, inspired great confidence. It was obvious that helping these children is his life, and he said as much when I thanked him for his kindness.

            We haven't had our first follow-up yet, so I have no results for you.

            Hugs to you and your sweetie pie!

            Cheryl
            Shirley
            Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

            Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

            Comment


            • spinecor

              Melissa,

              Thanks for responding. Alf mom said you are the one to talk to from the Kids forum. We are also going to NY to see Dr. Deutchman as well. So how long has it been for you and what are your results so far? Did you like him? He seems to have experience. We may do follow up in Sugarland, TX. Not the first but later ones, but we will wait to see how it goes. I asked for them to get pre certification from my insurance. So I know what to expect. Shirley


              Originally posted by MATJESNIC
              Mom 37,
              Where are you going for your Spinecor? We go to Dr. Deutcman in N.Y.
              Melissa
              Shirley
              Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

              Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

              Comment


              • Today is Nicole's 6-month mark wearing her Spinecor. She went from a 37 to a 32 in the first 3 months of wearing it. Her chiro believes that dancing 6 days a week has really made a difference. Ballet is one of the best activities for scoli. She goes back to N.Y. on April 10. Any other questions or concerns, feel free to ask anytime. Nicole is looking to talk to other girls who wear the Spinecor, so let me know.
                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


                • Spinecor is doing it's job

                  That is great to hear. I am happy to hear it. Thanks for the update. I will let her know other girls would like to talk with others wearing Spinecor.

                  Originally posted by MATJESNIC
                  Today is Nicole's 6-month mark wearing her Spinecor. She went from a 37 to a 32 in the first 3 months of wearing it. Her chiro believes that dancing 6 days a week has really made a difference. Ballet is one of the best activities for scoli. She goes back to N.Y. on April 10. Any other questions or concerns, feel free to ask anytime. Nicole is looking to talk to other girls who wear the Spinecor, so let me know.
                  Melissa
                  Shirley
                  Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

                  Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

                  Comment


                  • Another dad!

                    Greetings to all, but especially BlueCrystalMan and Gerbo!

                    My 7yo daughter got her Spinecor today. She has been in a Boston brace for exactly one year. We have been doing much praying, researching and seeking advice from wise friends re. the possible switch to Spinecor. Happy to report that everything is coming together nicely! My wife talked to Dr. Ouellette, DC, in Alpharetta, GA, when we first found out Spinecor was now available in Georgia (we live in Marietta), and he gave my wife the code for the Spinecor brace, which our insurance said they would cover. Also, being that there is a grand total of one Spinecor provider in our state, our insurance approved Dr. Ouellette as in-network, even though he's not in our network.

                    My daughter, who was very compliant with her Boston brace, though she definitely hates it, was nervous about getting the new brace. We drew up lists of pros and cons, and she accepted Spinecor as the obvious winner... but was still nervous about the unknown. Of course, I am happy to report that the fitting went very well, and dd has taken to the brace beautifully. The main concern now seems to be going potty... =O which is why I ended up at this forum...

                    We received two bodysuits, but we also have all the very nice Coolmax undershirts she used with the hard brace, so I think we're going to try to make them work with girls body briefs (bike shorts).

                    FYI, we homeschool, and I belong to many Yahoo groups, which keeps me busy, so I don't know how often I'll post here, but I just thought I'd introduce myself and our situation!

                    BTW: I forgot to mention that in anticipation to the Spinecor fitting, we didn't have dd wear the hard brace for about a week. We were astounded by the x-rays today, which showed remarkably gentler curves than previous x-rays. I suppose one could say the Boston brace did its job, but we all know that hard braces aren't meant to be corrective... they just stop the progression of the curves. At any rate, we'd rather give God the glory... after all, a large part of our prayer for wisdom re. the Spinecor brace has been asking for a miracle for our daughter. Thank you, Lord!

                    Blessings to you all as you seek the best treatment for your daughters (and sons).

                    javster

                    Comment


                    • Javster,
                      Welcome to the forum. I am fairly new, also. There is a lot information on this forum to help and support you in your efforts to do the best for your child.
                      We also homeschool.
                      I wish you all the best. I am praying for the children and parents on this forum.
                      If you don't mind my asking, what are your daughter's curves and when was she diagnosed?
                      Cheryl
                      P.S. I just noticed that you are another dad. I love seeing dads that care so much and get so involved. It warms my heart.
                      Last edited by cherylplinder; 03-14-2006, 10:40 AM.
                      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


                      • Do any of you check for stretching in the straps and adjust for it? I measured Rachel's straps against the lengths Dr. Coillard wrote on our return appoinment card yesterday, and depending on the amont of stress on that strap, they had all stretched different, but significant amounts. I noticed the brace was tighter on wash day, but didn't think further.
                        Thanks,
                        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


                        • Originally posted by cherylplinder
                          Do any of you check for stretching in the straps and adjust for it? I measured Rachel's straps against the lengths Dr. Coillard wrote on our return appoinment card yesterday, and depending on the amont of stress on that strap, they had all stretched different, but significant amounts. I noticed the brace was tighter on wash day, but didn't think further.
                          Thanks,
                          Cheryl

                          You really should double check with Dr. Rivard/Coillard but yes, personally speaking, I do check for stretching - if a strap looks loose I tighten it. I had to tighten strap #2 yesterday because it was very loose and it was causing her right side to pop out a bit and her torso didn't look level. I don't know if I'm doing the right thing, but I don't feel comfortable having the strap just hanging there. Also...... one of her crotch straps were VERY tight and creating a red mark on her legs and I had to loosen it ever so slightly - this could be attributed to growth of the torso ? It's the only time I've ever loosened one of the crotch straps *worried sick now for fear I've done something wrong* All I can say is that our follow up appointment can not come soon enough.
                          Last edited by Celia; 03-16-2006, 10:52 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


                          • I did call about loose straps yesterday.The measurements of the straps was on our return appointment card with the phone number. Last night , I thought about possible stretching. I didn't realize how much they had stretched until I measured.
                            I asked Valerie, Dr. Coillard and Dr. Rivard are out for a couple of weeks, if I should maybe take Rachel for a check with the Spinecor provider in Atalanta, as our appointment is still not made and at least several weeks away.( Her straps have already been loose for a couple of weeks. But this week, it was even more noticeable. I think I washed her brace twice last week, too. That makes a difference.) We are scheduled to see him Saturday.
                            Rachel's crotch straps have always been pretty loose. I wondered what function they served because they didn't seem tight enough to alter how her base fit.
                            Loose straps are nerve wracking.
                            Last edited by cherylplinder; 03-16-2006, 01:43 PM.
                            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


                            • Originally posted by cherylplinder
                              I wondered what function they served because they didn't seem tight enough to alter how her base fit.
                              Loose straps are nerve wracking.

                              Cheryl,

                              I've never touched the position of the crotch straps, I have a feeling it has a real important function - except for that minor adjustment. I wash the whole thing, plastic pelvic section and all by hand and hang dry (not by the mediterranean sea as Pola does ) I'm not sure on this, but the crotch straps provide the necessary tilt for the pelvic base ? I check Deirdre's straps everyday, and their position is not much different from the last appointment - not more than half an inch difference.

                              In your case, are the straps much longer ? I wonder if it could be the machine washing and drying that makes them stretch ?

                              Edit:

                              I just checked the original measurements given to me by Dr. Coillard:

                              strap #1 is 20cm th left
                              strap #2 is 20 cm th right
                              strap #3 is 40 cm sh left
                              strap #4 is 50 cm sh right

                              I measured all the straps and they have all stretched over time by about 3 cm each. I've adjusted for that difference on the velcro fasteners and tightened them an extra 3 cm from the blue mark.
                              Last edited by Celia; 03-16-2006, 03:21 PM.

                              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


                              • I did the same, adjusted the straps for the amount they had stretched. The fit is better. As for her crotch straps, they were loose the first day. But her base stays straight and does not ride up. I think occasionally Rachel straps it on a little low, and it slips down a little, but I've never seen it ride up. I could just be that she straps on her base really tight, and it keeps things in place.
                                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

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