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  • #31
    Braceguy,

    How long have you been fitting children with the Spinecor brace and why are you only seeing a few degrees correction??? This seems to contradict the results quite a few of us are getting. What's your interpretation for the fact that Drs Rivard and Coillard are getting great results with curves above 30 degrees in children that are in the midst of the PHV period and Juvenile curves above 30 degrees??? Why is it so difficult for everyone in the States to replicate these results? Is this a learning curve problem for everyone in the U.S and not for the rest of the world???? I wonder what kind of success orthopaedic doctors in the U.S. are having


    *

    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


    • #32
      Sherie,

      I have found that the children who only go down a few degrees in brace are the children who will not benefit from Spinecor. You have to go down at least 10 degrees to know that it is worth trying. My daughter went down about 17 at her initial fitting. Now she goes down 10 on each curve. But the jury is still out on whether it will work for her in the long run.

      Braceguy,

      I know what you are saying about these kids with their tiny curves. We don't know if they would have progressed without the brace. But the fact that they are going down is what is promising. Some of these little kids with their little curves are seeing amazing results.
      We put our daughter in it even though she was at a 40. For us, it was a choice of Spinecor or just leaving her alone to progress to surgery. We would never have put her in the hard brace.

      I agree with you about surgery. We fight it. We don't want our children to have it. But when it's our only alternative, we thank God that it exists and that it has come such a long way. It is true, I have talked with many teens who are doing so well after their fusion.
      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


      • #33
        I've been fighting surgery every step of the way and I still haven't really come to peace with it even though I know she needs it. It's extremely difficult to put your healthy child through something you know is going to cause them a lot of pain and you're still not 100% sure the results will be satisfactory in the end.
        We tried the alternative therapies and I know now they don't work, guess I'm just that kind of person who has to learn the hard way. When the only thing left is surgery, my attitude is why not try, there's nothing to lose at this point except money and who can put a price on your child's health? I'm not especially naive, but I have never dealt with any kind of health issues of this magnitude, it's been a real eye opener for me.
        I'm glad you've exposed this so at least people will be aware of it should they choose to go to a chiropractor. I can't believe how you hit the nail on the head, you really could have been talking about Dr. Smouse. I think he did train with Dr. Deutchmann (is that who we've been talking about?)
        We're interviewing and looking for surgeons now. Because of her lumbar being the structural curve, I'm particularly concerned about loss of flexibility so we are getting several opinions.

        Melisa
        I'm so glad for you that the brace is working and hope you have continued success. Has she gone through her big growth spurt? When Sheena was diagnosed, she was still like a child, now she's a sweet, young lady, what a difference 2 years makes.
        Last edited by Sherie; 02-23-2007, 10:50 PM.

        Comment


        • #34
          Sherie,

          Like I said before, I don't know if the Spinecor is working. I know we are still in the game. But don't know what the outcome will be. Nicole had her major growth spurt before she was diagnosed. But we didn't know it. She had a minor curve that her regular doctor saw. One year later she was at 40. Eight months later she got her period and Dr. Coillard said the year before the period is the most critical growth spurt. So we did the math and figured out that was when she got to 40. She is only at a risser 0, but 5'5" fully mature on the outside. We aren't sure why. But Spinecor works best on risser 0, so we're hoping it is doing its job.

          As far as surgery is concerned, what has helped me the most was talking to as many Parents and kids who have gone through it. Especially the ones who had gone through it at the hospital that we would choose. The mind eventually gets used to the idea. When you talk to these kids who have came out of it so well, you begin to accept it. Like I said earlier, how many people in this world wish there was a surgery for their affliction. We have come a long way. I'm just glad it is not 30 years ago when we took about surgery for scoliosis. They have come a long way.

          Christine,

          I meant to say that most likely the MRI will come out fine. And no matter what, everything will be okay!!!
          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


          • #35
            Wow, what a post . . I've been reading and it's disturbing to hear how the brace is getting tainted. My daughter's been in her Spinecor brace for over a year, she was 20 out of brace, and in brace she's a 6. Because her older sister had fusion surgery over two years ago, we put her in a brace early. Braceguy, you're right, our MD/ortho surgeon would not put her in a brace at 20, even with her family history. By the way, the post-op daughter's doing great. We're very pleased with the Spinecor Brace.

            Comment


            • #36
              WOW this is all very interesting. I had an appt. with Dr. D in New York. 2 weeks before our visit I was steered to Montreal by someone on this forum. I think back and remember how disappointed the ins. coordinator at Dr. D's was when I told him we were going to Montreal. (lost a sale?) And thinking back I was skeptical going to New York because of the cost and vest. testing. As soon as I spoke to Dr. Rivard I felt as though the brace was a more legitamite treatment.

              We have had an excellent experience with spinecor. My daughter 6 yrs old at 33 degrees was a more than likely surgery case. Because of spinecor we at least have a chance to avoid it. No one knows what will happen long term but right now she is happy and her muscles are strong.

              My opinion is that spinecor success is limited acording to the degree of the curve and to the age of the child. What needs to be done is awareness. Awareness of scoliosis in general as well as early detection and the use of spinecor on young smaller curves. This wait and watch theory is dangerous. especiallly when there is a brace like spinecor.

              In order for the brace to even get a chance the use of it needs to be limited to Orthos. All that braceguy says makes sense.I am going to talk to Dr. Rivard personally (We see him March 1st Yeah!!) and see if he is aware of the problem and give him my opinions.

              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


              • #37
                I believe there is a reluctance by U.S. doctors to accept non operative measures in the treatment of Scoliosis and anyone who comes along with a non operative solution is suspect. Recently one mom told us that her ortho at a well respected Shriner's hospital called the Spinecor brace a "scam" and claimed a lawsuit underway?!!!! Many parents of children with infantile scoliosis face the same kind of resistance to serial casting for their children even though this treatment was *proven* to reverse progressive curves 40 years ago!!!!. Think about the countless lives that have been ruined by doctors would rather see a baby progress to the point of surgery. Nowadays when doctors talk about growth modulation they refer to ~operative~ measures to alter the natural history of scoliosis either by vertebral stapling or tethering. For the most part, no mention is made of non operative treatments. Vertebral Stapling will probably gain faster and wider acceptance by medical doctors than the Spinecor when treating "small" curves. It's unfortunate there are a few bad apples in the chiropractic field that are ruining things because I honestly don't believe the Spinecor will gain wide acceptance by the medical establishment in North America for many years to come unless the push comes from the families involved. There is no desire to "learn" how and why it works because the alternative is so much more profitable for many concerned.

                *

                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


                • #38
                  Hi Celia,

                  In case anyone got the wrong impression, I'm sure you were not talking about Shriners Hospitals when you said:

                  "the alternative is is so much more profitable for many concerned".

                  As mostly everyone surely knows by now, Shriners Hospitals do not charge a penny for their services - and the stapling surgeries are mostly performed by Dr. Betz and his team at Shriners Hospital in Philadelphia. In addition, the doctors at all Shriners Hospitals make a flat salary, so whether they do one surgery per month, or fifteen, there's not an extra penny in it for them. Probably one reason why the system works so well.

                  I do agree with you that with some other doctors, that sometimes (not always) money is a factor. That's one reason I am such a fan of Shriners Hospitals - I know that their only focus is on what is best for the child, not on money - they do not even bill insurance companies because they don't wish to be paid for their services.

                  One mom I know recently saw a doctor at Shriners in Philadelphia, expecting to hear surgery because of the degree of curve, which was on the high end of the "borderline" area, and was told that since her daughter was done growing, she would not require surgery unless she and her family wanted it for cosmetic or other reasons - but the doctor was NOT recommending it.

                  I, too, get angry when I hear chiropractors or ANY other doctors exploiting desperate families for money! It sounds to me like your Spinecor doctors in Montreal, like our team in Philadelphia, are NOT in it to make a big buck. Aren't we fortunate, as parents, when we find such wonderful doctors in whom we have so much faith!!
                  mariaf305@yahoo.com
                  Mom to David, age 17, braced June 2000 to March 2004
                  Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                  https://www.facebook.com/groups/ScoliosisTethering/

                  http://pediatricspinefoundation.org/

                  Comment


                  • #39
                    The mom I was referring to was "My Little Angel" and I don't know which Shriner's hospital it was.... I know for sure it wasn't Shriner's Philly. Dr. Betz is an amazing doctor and the work that's being done on vertebral stapling is remarkable!!!! However, I have an issue with subjecting children with 20 degree curves to a major operation - this is just my opinion. I was making an observation ( )that at the end of the day, surgical procedures such as vertebral stapling, tethering or rib resection will take precedence over a viable non operative solution like the spinecor to address "small" curves.


                    *

                    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


                    • #40
                      Celia
                      I agree totally Unfortunately if spinecor is continually discredited it will never become widly used for those small curves. I am taking advantage of the awareness week the spinekids have come up with. We need to get word out for early detection, and early intervention. We need to try to get scoliosis week recoginzed nationally then take advantage of that week to inform parents.

                      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


                      • #41
                        Thanks, Braceguy,

                        I have a question for you that is unrelated and I'm not sure if you know the answer to this. My daughter had her major growth spurt, has had her period regularly for almost a year, looks completely mature, according to statistics is probably done growing (maybe an inch left if anything) but is at 0 risser. Well, she was in Dec. when we were last in Montreal. Any thoughts about this?
                        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


                        • #42
                          Originally posted by Celia Vogel
                          The mom I was referring to was "My Little Angel" and I don't know which Shriner's hospital it was.... I know for sure it wasn't Shriner's Philly. Dr. Betz is an amazing doctor and the work that's being done on vertebral stapling is remarkable!!!! However, I have an issue with subjecting children with 20 degree curves to a major operation - this is just my opinion. I was making an observation ( )that at the end of the day, surgical procedures such as vertebral stapling, tethering or rib resection will take precedence over a viable non operative solution like the spinecor to address "small" curves.


                          *
                          Just to clarify, 20 degree curves are not routinely stapled. In general, it usually has to be around 25 or so (I say "in general" because, of course, there are individual factors to consider).

                          A while back, there was a boy whom Dr. D'Andrea saw (I actually referred the mom to her). He presented with a curve of around 20-21 degrees. He had started out just under 30 degrees, and had been braced by another doctor. The boy really wanted to ditch the brace and get the stapling. (Yes, it's a major operation but much less invasive than fusion and thank God every child I know bounced back in a few weeks with no complications - so, yes, it is surgery - but as surgeries go, kids who have had it have done wonderfully.)

                          Anyway, Dr. D'Andrea suggested a compromise - that since he was responding fairly well to the bracing, which he had only been wearing for 4 or 5 months, that he try it "part time" for a while, and just wear it at home for 12-16 hours a day, and come back for another check up. At the subsequent check up, his curve was holding with the part-time wear and that's where they stand now. If his curve progresses, then Dr. D'Andrea will consider performing the stapling.

                          Some parents I have spoken to feel that the stapling has a better chance than ANY brace of helping their child avoid fusion later on.

                          And although I know the Spinecor is more comfortable than a rigid brace, it's still a brace - and while I'm not saying that it isn't a great option, there may be others who would prefer the stapling in order to avoid years of wearing ANY type of brace. Again, it's a personal choice.

                          Nobody wants to put their child through surgery - but sometimes a parent weighs all the options and feels that a surgery like the stapling may be the best overall option with the highest chance, in their opinion, of trying to achieve their goals (ex., avoiding fusion). I guess everyone sees things differently. Hopefully, we all make what turns out to be the best decision for our precious children.
                          Last edited by mariaf; 02-25-2007, 03:01 PM.
                          mariaf305@yahoo.com
                          Mom to David, age 17, braced June 2000 to March 2004
                          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                          https://www.facebook.com/groups/ScoliosisTethering/

                          http://pediatricspinefoundation.org/

                          Comment


                          • #43
                            Maria,

                            Well said. It makes perfect sense to me.
                            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


                            • #44
                              Maria did make some excellent points however... I don't think the Spinecor will be an option or a choice for ~many~ parents unless they're willing to travel to see Dr. Rivard in Montreal or else undergo treatment with the "vulture" chiropractors or a select few orthopaedic surgeons. In the near future, most will be offered the choice between rigid bracing, vertebral stapling or some other experimental surgical procedure.


                              *
                              Last edited by Celia; 02-25-2007, 07:55 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


                              • #45
                                That would really be too bad. I wonder how Spinecor is doing in other countries.
                                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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