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  • #16
    Here is a picture of Deirdre wearing the Spinecor brace, this picture was taken a couple of weeks ago and you can't even tell there is anything out of the ordinary or that she is wearing a brace. Notice the big smile


    http://i41.photobucket.com/albums/e2...4_edited-1.jpg
    Last edited by Celia; 10-17-2006, 08:32 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

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    • #17
      Just me again

      Thanks to everyone for their great advice. What a great picture of your daughter Celia. She is adorable.

      Well just got back from our second opinion appointment over at NEMC with Dr. Braun. He was so incredibly pleasant and thoughtful it certainly helped. He was able to answer all of our questions (and we had plenty). He even admitted that with juvenile scoliosis there really is no correct answer. Its all about compliance and what works for each family.

      Here is where the plot thickens. Ben's x-ray was taken at his pediatricians office and showed a 20 degree S curve which was verified by Children's Hospital, who did not take any additional xrays. Dr. Braun thought that the curve on the initial x-ray was actually larger (26 degree) but said that the difference was not significant. We all suggested that Ben have additional xrays and Dr. Braun reviewed and noted that Ben's curve was now at 15 degree. As you can imagine we were all shocked and asked how this could possibly happen.

      He has now advised that we wait 4 months and do some follow up xrays. He even went so far as to say that if Ben was his son he would not begin bracing yet.

      We are happy but confused. Has anyone heard of a curve going down so significantly as to cause no bracing. How can a curve be so different? The first xray was taken at night, could that have something to do with it.

      I appreciate all of your advice and comments. We were leaning toward this Doctor from the moment we met him and see no reason to go anywhere else.

      Thanks

      Ken

      Comment


      • #18
        taxlawyer....

        Hi Ken,
        I sent you a Private Message.....
        Lynn
        1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
        2000 Partial Rod Removal
        2001 Right Scapular Resection
        12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
        06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

        Comment


        • #19
          Ken. I also have a 7 year old son. He is fine with his. Brace I hope yours is okay with his.
          -annie
          Annie. (61* Before surgery 8* after, Surgery 1990)
          Mother of
          Anna, age 11, 54* curve (surgery on 9/2)
          Mack, age 7, 32* curve (TLSO Brace)
          Meghan, age 2 18* curve (Monitering)
          www.potterfamily.piczo.com

          Comment


          • #20
            Ken,

            I have heard that happening. It happened with a boy at the office where Nicole was being braced. The curve would go down and back up again. I believe that boy's Mom posted here last year about that topic.

            Anyone else know anything about this?


            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

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            • #21
              He has now advised that we wait 4 months and do some follow up xrays. He even went so far as to say that if Ben was his son he would not begin bracing yet.
              to me that sounds like very sensible advice, I do not think there is a high risk of significant progression over 4 months in this situation, as he is not in a growthspurt.

              Comment


              • #22
                Originally posted by taxlawyer
                Dr. Braun thought that the curve on the initial x-ray was actually larger (26 degree) but said that the difference was not significant. We all suggested that Ben have additional xrays and Dr. Braun reviewed and noted that Ben's curve was now at 15 degree. As you can imagine we were all shocked and asked how this could possibly happen.

                What was Dr. Braun's reply as to how the curve could decrease from 26 to 15 degrees? I guess if it could increase abruptly for no unknown reason it go the other way as well.

                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


                • #23
                  Celia: He said that it could be because the original xray was taken at night or because Ben had just had pneumonia before the xray was taken. He also admitted that he wasnt quite sure but he was confident in his measurements.

                  Make any sense????

                  Ken

                  Comment


                  • #24
                    Hi Ken
                    Excellent news. I do remember early on in my research reading about cases of idiopathic scoliosis that disapeared as quickly as they appeared. I can not for the life of me remember where I read that. But any how great news!!!!!

                    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


                    • #25
                      Curve up and down...

                      My daughter's spine constantly went up and down. She was diagnosed at 11 and she is now 20. Never braced. The highest her curve went was 27 and lowest 14 on her upper curve; lower was highest 20, lowest 12. Her ortho said sometimes he sees this and would tell her to continue doing what she was doing. She was always involved in sports when she was young and is now a competitive dancer. Perhaps all the exercise at a young age? When she would go for her annual checkups, her primary doctor would measure her height and she would be 5', the next time 5'-1/4", then back to 5', etc. I guess when her spine would straighten, she'd be a bit taller. It was always a mystery to me but thankfully she is doing great. LYNN
                      1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                      2000 Partial Rod Removal
                      2001 Right Scapular Resection
                      12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                      06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

                      Comment


                      • #26
                        Follow up

                        Hey everyone. We just got back from my sons 4 month follow up appointment. Curve progressed to 35/28. Amazed at how big it got but guess he went through a growth spurt. We pick up the boston brace next week. Obviously I was hoping for the best but it is what it is. He seems to be handling it better this time but did say to me this morning "Sometimes life stinks"

                        Thanks as always for all the support

                        Ken

                        Comment


                        • #27
                          hi ken,

                          sorry to hear about your son's progression. weird how 4 months can change a curve so rapidly. have you thought about the spinecor brace at all instead of going the boston/tlso route? are you going to children's or nemc?

                          my best,
                          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


                          • #28
                            Hi Ken,

                            I am also sorry to hear about your son's progression.

                            Desheah made a good point about considering the Spinecor. I'm also curious if you thought at all about the stapling procedure. I'm not saying that you should necessarily go with either of these options, just hoping that you at least considered them.

                            Some orthos tell you that hard bracing is your only option and they truly believe that because they are not comfortable with the newer forms of treatment. I know because David's old ortho was one of those - I had to find out on my own that there were other options out there.

                            Whatever you decide - Best of luck to you and your son. And please keep us posted.
                            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


                            • #29
                              Thanks for your kind words. We spent a lot of time considering the spinecor brace and am still considering it. We love the Dr. at NEMC and he said he would consider spinecor but didnt know a lot about it. He was very concerned with the rapid progression and highly suggested we start with the TLSO. I am going to ask him to research the Spinecor a little more (he had heard about it but didnt use it).

                              You know when you just click with a doctor and feel he has your child's best interest at heart. That is Dr. Braun. Thanks for the suggestion to go to NEMC. Children's just wasn't a good fit

                              Ken

                              Comment


                              • #30
                                that's a hell of a change, even taking into account normal variation of measurements. You do wonder whether at this stage this curve could well be very flexible (as it hasn't had time to establish itself), which would make it even more worthwhile to at least try the spinecor. You can always fo back to a tslo if it doesn't work.

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