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  • I guess I somehow missed new posts to this thread over the past week or so...

    so Tammy, belated Welcome to the boards! I'm so glad that your daughter's fitting and results went so well. My daughter is in a similar boat (see my signature). They wanted to put her in a Milwaukee also since she'd have so many years in brace that they were afraid of rib deformities if she was in a TLSO. My daughter had an initial correction in brace similar to your daughter's and then when we went back a month later, she had even more correction (although we've given up a couple degrees of correction since).

    Concerned Dad, thanks for the info about priceline. I'll have to look into that for our next trip. Also, it's good to hear about your daughter's initial results. What a story! I'll be thinking of you when I see the church our next visit. I agree with you on the xrays. I love that they have the lower radiation machine (when they first got it they were 1 of only 2 hospitals in the world to have it - presumably some more hav e gotten it in the past couple years). I also like the precision of the xrays with the foot positioners insuring a similar stance at each xray.

    Pat, 11 degrees is great! I missed your earlier post, but I now see you posted last week that you'd be going up soon so I'm guessing that your post is after the Jan visit? Always such a good feeling to come home from an appointment that goes well!!! How old is your child? (you may have posted it before, but I don't remember)

    CAmomof2, we go back in March also and I'm starting to get nervous as I always do. Especially since the other day when I saw her out of brace it seemed to me like maybe her curve was a little bigger? Although my husband thinks it looks the same. I hope he's right this time (even though normally I insist that I'm the one whose right)!
    Last edited by jillw; 01-23-2009, 09:26 PM. Reason: typo, as usual
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

    Comment


    • thanks for the kind words folks, I'm glad you enjoyed my story.

      I'm just happy I discovered this AFTER I decided to go to Montreal. The stubborn scientist part of me may have decided against going thinking I was being biased by a memory of my mom or something.

      Sharon, I enjoy NPR. It would be great to hear, say, Dr Rivard, Dr Dolan (in Iowa) and perhaps Dr. Weiss (see my upcoming post on the "Why I decided ..." thread) discussing AIS bracing with Ira Flatow on a Science Friday show. For me, that would be a "driveway moment".

      Comment


      • Originally posted by jillw View Post

        Pat, 11 degrees is great! I missed your earlier post, but I now see you posted last week that you'd be going up soon so I'm guessing that your post is after the Jan visit? Always such a good feeling to come home from an appointment that goes well!!! How old is your child? (you may have posted it before, but I don't remember)
        Yes, it was after Jan. visit; she's 15.
        p

        Comment


        • Thanks for the welcome. I was wondering if anyone else had a problem with the base riding up. We put the leg straps tight, the strap around the hips tight but after about an hour of wearing the brace, the base rides up about an inch or so which makes the number 3 strap loose. The brace has been adjusted which has improved it slightly but it is still riding up. Do any of the other younger kids have this problem.
          Mum to Leah 7 years. Diagnosed Oct 2008 - 28 degrees. In SpineCor since December 2008 - 13 degrees. April 2009 - 7 degrees.

          Comment


          • Originally posted by pat View Post
            Yes, it was after Jan. visit; she's 15.
            p
            Hi Pat!
            I was wondering since your daughter is 15 - did they say when she could start weaning herself out of the brace? Must be a lovely feeling to even imagine that! S.
            CAmomof2

            July 07 - T 26*
            Aug 08 - curve now 22*
            Sept 08 - SpineCor Brace (in brace 17*) Ste. Justine
            March 09 - in brace 14*
            Aug 09 - in brace 14* / MRI normal
            Feb 10 - in brace 18* - had an oob xray - now 35*
            June 10 Considered VBS T 32*, L 27* , Stopped SpineCor brace
            Sept 10 T 38*, L 26*
            April 11 T 45*, L 31*
            July 11 T 51*, L 37*
            MIS SURGERY - NOV 28, 2011 / Age 12 / Fused T4 - T12

            Comment


            • [QUOTE=LeahsMum;70319]. I was wondering if anyone else had a problem with the base riding up.

              LeahsMum,
              This has happened to us as well and we were told that it was ok. S.
              CAmomof2

              July 07 - T 26*
              Aug 08 - curve now 22*
              Sept 08 - SpineCor Brace (in brace 17*) Ste. Justine
              March 09 - in brace 14*
              Aug 09 - in brace 14* / MRI normal
              Feb 10 - in brace 18* - had an oob xray - now 35*
              June 10 Considered VBS T 32*, L 27* , Stopped SpineCor brace
              Sept 10 T 38*, L 26*
              April 11 T 45*, L 31*
              July 11 T 51*, L 37*
              MIS SURGERY - NOV 28, 2011 / Age 12 / Fused T4 - T12

              Comment


              • Originally posted by CAmomof2 View Post
                Hi Pat!
                I was wondering since your daughter is 15 - did they say when she could start weaning herself out of the brace? Must be a lovely feeling to even imagine that! S.
                Since she only just got her period, we've got probably two years ahead of us still, but now there is a light at the end of the tunnel, but the next 6 months to a year . . . he stressed how important it is during this time to wear brace more then ever. p

                Comment


                • This is simply outrageous!!!!

                  My daughter was supposed to see Dr Rivard today - it would've been her first check-up in brace

                  My husband and her drove yesterday all the way from Boston, just to find out that both Dr. Rivard and Dr. Coillard are out of town today

                  Nobody knows where they are and nobody called us to re-schedule an appointment

                  My husband had to plan his business trip to Russia around this appointment

                  I am soooo pissed off ......

                  I can't believe it .... This is so unprofessional ......
                  Last edited by BellasMom; 01-27-2009, 10:47 AM.
                  from Boston, MA, USA

                  9 y.o. daughter
                  07/08 - diagnosed with L23
                  10/08 - wait and see: L25
                  11/08 - Spinecor: L15
                  01/09 - Spinecor: L15
                  06/09 - Spinecor: L14
                  11/09 - Spinecor: L14
                  04/10 (Out-of-brace): L30-T30
                  08/10 - out of Spinecor
                  01/11 (Out-of-brace): L42-T30
                  02/11 - Rigo-Cheneau and Schroth

                  Comment


                  • Bellas Mom

                    I am sorry to hear that. I have had their office call to reschedule the day before, ( we drive 7 hours and need to plan pet sitters and hotels stays way ahead of time) but never just not be there. I hope they are OK. I do know that they have a new receptionist, it will be hard for her to fill Sue Ann's shoes. I understand how mad you are, not only the planning but the anticipation of the visit, must be dissappointing. I always call to confirm our appointment ahead of time since the cancellations.
                    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


                    • Bella's Mom,

                      I can certainly understand your feelings. We, too, travel (about 3 hours NY to Philadelphia) to our appointments - and on the rare occasions when they have had to be rescheduled, we recieved notice WEEKS in advance. I would be upset if I was given only a day or two notice because I juggle many things around these appointments (work, my other kids, etc.). But to travel all that way only to find that the doctor wasn't there would be inexcusable in my opinion!

                      I hope you get a good explanation (not that ANY explanation would be acceptable) as to why this happened and hopefully it never happens to you or another family again.
                      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


                      • Originally posted by christine2 View Post
                        I always call to confirm our appointment ahead of time since the cancellations.
                        Trust me! From now on, I'll be this smart too
                        from Boston, MA, USA

                        9 y.o. daughter
                        07/08 - diagnosed with L23
                        10/08 - wait and see: L25
                        11/08 - Spinecor: L15
                        01/09 - Spinecor: L15
                        06/09 - Spinecor: L14
                        11/09 - Spinecor: L14
                        04/10 (Out-of-brace): L30-T30
                        08/10 - out of Spinecor
                        01/11 (Out-of-brace): L42-T30
                        02/11 - Rigo-Cheneau and Schroth

                        Comment


                        • Originally posted by mariaf View Post
                          I hope you get a good explanation (not that ANY explanation would be acceptable) as to why this happened and hopefully it never happens to you or another family again.
                          I have a feeling that it has something to do with his secretary, rather than with him.

                          You see, my husband tried to at least have an X-Ray done, so that Dr. Rivard could send us results by email, but the radiology technician was nice enough to talk him out of it, because Dr. Rivard makes the adjustments first and then the X-ray. But that's not the point - the point is that the technician had some patients scheduled for tomorrow for Dr. Rivard, but did not have any record of Bella coming today. So, I assume that he did cancel our appointment, but his secretary did not follow it all the way through

                          But it's not acceptable anyway
                          from Boston, MA, USA

                          9 y.o. daughter
                          07/08 - diagnosed with L23
                          10/08 - wait and see: L25
                          11/08 - Spinecor: L15
                          01/09 - Spinecor: L15
                          06/09 - Spinecor: L14
                          11/09 - Spinecor: L14
                          04/10 (Out-of-brace): L30-T30
                          08/10 - out of Spinecor
                          01/11 (Out-of-brace): L42-T30
                          02/11 - Rigo-Cheneau and Schroth

                          Comment


                          • I agree it is usually the staff (not the doctor himself) who is responsible for mistakes of this nature.

                            I also agree that it can't hurt to call a few days before to confirm. I do that as well, when I remember - but I think after hearing your story I will do it EVERY time :-)

                            By the way, what's the next step for you? (I mean as far as having adjustments made to the brace).

                            Good luck - and I hope it is smooth sailing for you from here!
                            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


                            • Next steps: I left them a voice mail and sent a very angry email.

                              I hope to hear from them sometime soon and will schedule another appointment. My poor husband will have to do another 5 hour drive there and 5 hours back

                              I don't have a choice unfortunately
                              from Boston, MA, USA

                              9 y.o. daughter
                              07/08 - diagnosed with L23
                              10/08 - wait and see: L25
                              11/08 - Spinecor: L15
                              01/09 - Spinecor: L15
                              06/09 - Spinecor: L14
                              11/09 - Spinecor: L14
                              04/10 (Out-of-brace): L30-T30
                              08/10 - out of Spinecor
                              01/11 (Out-of-brace): L42-T30
                              02/11 - Rigo-Cheneau and Schroth

                              Comment


                              • I hear you - we do what we have to do for our kids - hopefully they will squeeze you in again soon - it's the least they could do!

                                Hopefully, it will all pay off if you get some good news on your visit!
                                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

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