Announcement

Collapse
No announcement yet.

spinecor advice

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • spinecor advice

    We recently found a 30 degree S curve in my 6 year old daughter. My husband and I are compiling information so we can decide how to treat this. Does anyone have personal experience with the spine cor brace pro or con.
    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

  • #2
    Hi Christine, and welcome. If you use the "search" button and type in Spinecor, you'll find a huge thread about Spinecor.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

    Comment


    • #3
      spinecor

      I tried the search and did not find much. am I missing something
      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


      • #4
        YES! You are missing a lot. If you type in SpineCor brace (sorry, I wasn't exactly sure what the thread was called), you will find a thread that is 56 pages long (I think it is simply titled SpineCor). There are a handful of people there whose kids are currently in the SpineCor and are having good results.

        Mary Lou
        Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

        Comment


        • #5
          Hi Christine,

          You would first have to get a consult with a Spinecor doctor - many parents believe that Dr. Rivard and Dr. Coillard are the "BEST" and would not consider going to any other spinecor doc. (Melissa - what do you think ???) I don't know if the spinecor brace would be appropriate for your daughter however, I don't see any reason why it shouldn't be if she has idiopathic scoliosis. A 30 degree curve for a six year old is already quite advanced and it would appear that bracing is very much in your child's future. My daughter's situation is a little different as she was diagnosed with infantile scoliosis at the age of 19 months and we went through a period of serial casting before choosing to go with the spinecor brace. My daughter is wearing the spinecor brace and it's FANTASTIC and I have absolutely no regrets with my decision to go with it.
          Last edited by Celia; 08-14-2006, 05:18 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


          • #6
            spinecor

            Hi Celia
            Thank you for responding. I am so new to this and am worried that I will make the wrong decision. In about 1 week we have an appt. w/ the ortho in the am then Dr. Deuschmen (sp?) in the afternoon in New York who is a big wig with the spine cor brace. My husband and I both think it is a no brainer. My daughter is so young with so many growth spirts left to go that we are worried about muscle atrophy and such. I hate to go against the standard hard brace but fear that if I do not have an open mind to different treatment that we could miss out on a wounderful alternative.

            We are having issues with the insurance Co. which concerns me. Do they know something that I don't. I have not heard any negatives about the brace but if anyone does please let me know so I can research.
            I suppose you can call me a bit suspicious of the positve effects.

            I am glad your daughter is having success with the brace are there any corrections yet?



            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


            • #7
              Hi Snoopy

              hi Snoopy

              I dug deeper and did see the threads that you were speaking of however they seem to be dated. It seems that Spinecor has research funding issues which concerns me. I will futher investigate the threads after the kids go to bed.

              Thank you
              My fear is that I will regret the decisions that I make. But I am sure every parent, scoliosis or not has the same fears.

              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


              • #8
                Christine,

                I would be happy to talk to you on the phone or through E-Mail. I don't know where you live. But we live in Pa, outside of Phila and we travel 7 hours each way to Montreal for our appts. for our 12-year old.

                I know it is such a difficult decision. We were denied in-network payment from our insurance because we could not get an orthopedic doctor in our network to say that our daughter should wear spinecor.

                We have spent thousands of dollars. We don't know if the brace will work for our daughter. But we could not put her in that hard brace. We just couldn't do that do her. We also know that she would not have been able to tolerate it.

                If I had to do all over again I would choose Spinecor again. We don't think a hard brace would work any better. But I wish I had started with the doctors in Montreal from day one. They are orthopedics and they know their own brace better than anyone. But I never thought about going to a different country to see a doctor. I also never realized that Montreal is not so far from where we live. You get used to the 7-hour drive. Let me know if you want to talk. I am happy to help. I understand. Believe me.

                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


                • #9
                  Spinecor

                  MATJESNIC
                  I would love to talk. My E mail is firstcmd@sbcglobal.net

                  Over the phone would probably be more productive. I live in Connecticut.

                  My 3 hour trip will seem much easier now considering you are doing 7 hours!
                  (1 hour by car then 2 by train)
                  New York City makes me a little nervous I am a country country girl.

                  Thank you!!
                  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


                  • #10
                    celia I would love to talk

                    I spoke to melissa today (Matjesnic) We had a great conversation. I feel much more confident about the route I am taking with my daughter's treatment. Melissa suggested I speak to you because your daughter is younger as is mine. My E mail is firstcmd@sbcglobal.net

                    Hope to converse soon.

                    Christine
                    Last edited by christine2; 08-15-2006, 01:20 PM. Reason: wron e mail
                    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


                    • #11
                      Christine, interesting, we also live in Connecticut, and my daughter's been in the Spinecor for about 10 months now; we do travel to St. Justine's to see Drs. Rivard and Colliard. We've all been very pleased, so far! pat

                      Comment


                      • #12
                        Hi Pat

                        Dr Rivard called me back today and said someone will call me tomarrow to set up an appt. I think this is a good move for us. How often do you go for re checks? I was wondering if the possibility of getting a correction with spinecor then stapling would be a possibility. My daughter is so young and to be in a brace for 10 years seems like torture. I am also scared to death by any kind of surgery.

                        My mind is in overload!!
                        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


                        • #13
                          Hi Christine,

                          I just got your post. I'll e-mail you privately later this morning - I'm in a rush right now to get the kids to their swimming classes. Hopefully we can chat



                          celia

                          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


                          • #14
                            Spinecor brace

                            I wanted you to know how helpful everyone on the Spinecor thread has been. I have a 12 year old daughter whose curve seems to be progressing. I believe Spinecor is a great bracing alternative to a hard brace, although for us we are not getting correction, but trying to hold the curve from getting worse. My daughter was braced in Spinecor by Dr. D in NYC in March. Stan at that office was very helpful in helping me with filing with my insurance. My insurance covered the brace and visit at out of network cost since there is no one in network doing the brace. It has covered most of the costs at out of network. Another option is Shriners in Erie, PA, who braces with Spinecor. They are masonic funded at no cost to you. I did go there for a second opinion the from an orthopedic doctor who is familiar with Spinecor. He felt no brace may hold her curve, but felt Spinecor was as good as any. We are continuing Spinecor as she is not a surgical candidate now, and trying to keep it that way. Spinecor has been very successful for others and am still glad we are able to have an alternative to a hard brace. I would talk to those on the Spinecor thread with children your same age and curve degree if possible. All the people on this thread are very helpful. Also more doctors in the US are being added to the Spinecor list, so you can always keep looking for one close to home if that is a necessity for you. Best wishes.
                            Last edited by Mom37; 08-16-2006, 09:52 AM. Reason: add info
                            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


                            • #15
                              Appt. in Montreal

                              My daughter has an Appointment in Montreal on Monday 8/21 I am so excited. I had a great conversation with Celia tonight and feel so GOOD about the spinecor brace. I also spoke to Melissa Yesterday and both of you have made me feel like there is hope. I will let you know how things go I understand Dr. Rivard is the best!!! I have not felt this relaxed since I found out about my daughters scoliosis. I think I may actually be able to get some sleep after we go to Saint Justine Hospital.

                              I think my daughter is a great canidate for the brace since she 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

                              Working...
                              X