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  • Hi Christine, that's wonderful news for you and your family. How old is your daughter now? I'm sure it's in the thread somewhere but...anyway, enjoy your relief.

    Chris
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

    Comment


    • My Goodness Chris you are also having excellent results!! My daughter is 9 now. We still have a long road ahead. Sometimes I feel like it will be forever till we are out of the woods but it will all be worth it, I hope!!
      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


      • I have been on this road for 5 years now Christine, and there are moments when I am just so tired from it all and other moments where I am so grateful, because it really could be much worse! The worse times are right before each new xray.

        Emily is almost 11 and has grown 1 1/4 inch since June. I think we are starting in the "most dangerous time". We haven't been as lucky with such great results. Most recent oob was 27

        Will be going next month for an in brace-Keeping my fingers crossed.
        Emily's mom-11 1/2 years old
        28 degree scoliosis 9/04
        Chiari Malformation/SM decompressed 11/04
        17-24 degrees 11/04-6/07
        Wearing Spinecor Brace since June 07
        3/31/10- 29 degrees oob
        11/18/09 17 degrees in brace

        Comment


        • Hi Emarismom

          Good luck w/ the x ray. It is very nerve wracking. Thanks for the pep talk. We are doing the best we can. It must be hard facing "dreaded puberty" with or w/ out scoliosis.
          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


          • to pooka1

            Not even sure I'm doing this right,
            but a big HUGE thank you for your kind words they were and are
            very calming. I Shall call childrens national and see if they have a
            SRS scoliosis research society person there, I know my appointment is with
            a dr who specializes in childrens scoliosis and that, will be on Mon, Nov 9 and oh boy am I going to have a list of questions.

            3 Days ago I didn't even know what Cobb was!

            trying to read things, and looking up words at the same time. And YOU have already answered a huge question I had ! (thank you ) ...being totally ignorant here,
            and reading through so much this weekend ...I did know if the , number, is
            cumulative, or specific. I know the 18% is the only one I have to worry about now.

            Another question for you , or anybody else out there,
            and yes call me Snow,
            any recommended books I can order up...I totally see knowledge is power, with this, and wanna feel like I have some power? (despretely) right now I'm just doing what the doctor tells me, (even if I dont understand half of it)

            and thank you, for the vote of confidence, swimmingly, I'm not so sure,
            but trying!
            snow

            Comment


            • Originally posted by Snowwhite832
              maybe alot of you, werelike me, at one point
              Hi Snow,
              yes, most of us parents can totally relate to what you are going through right now.

              I cant recommend any books. It would be good to educate yourself as much as possible so you can speak with the doctor and it sounds like you are well on your way.

              I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.

              Dont hesitate to ask us any questions but remember, we are just parents like yourself with no formal training. We can just offer our opinions. They often differ.

              And thank you to both you and your husband for the sacrifices you are making for our country.

              Comment


              • thanks concerned dad

                I've read a ton of your posts over the weekend,
                Your so ..smart about all this stuff
                thanks for your kind words about my family and husband
                lots of ..accolades (if I spelled that right, probably not) a few years ago
                not many these days, though us as a family have lived with him
                being in the middle east, about half the time , since 2002 or pretty close,
                a big deal back then it seems, but now a days, except for me and kids, no big deal.
                You mentioned moving the post, I'm probably posting in the wrong place,
                where would be the best place for a newbie?

                and, I started here, cause ..spinecore, good, bad, my savior if the watch and see, I can't deal with , or ...also , sortof reminds me of (please nobody get mad, I am a newbie) the ole medicine exlire guy , it'll cure anything and everything, ?
                It's why I posted here, anyways, I already contacted them , pre-emtively
                before even hearing for childrens nation hospital, an expert,
                cause I'm afraid,
                cause my son is so young
                and he's so close to the curve 3% off,
                I want action, I want ...to DO something
                and from everything I've read, i'll have to wait
                and, are there any ..blogs to complain about family members ?
                I didn't see any
                I have one brother, this weekend, head football coach yelling at me,
                about surgery, my son isnt even, after reading up, a canidate for brace,
                the other
                saying, I know nothing and untill I talk to specialist, nothing is really real
                it's all conghetore. (and I'm a fruit cake listening to people online)
                which , I'm not, takign information and trying to research, doing exactly what doctor tells me do,
                even though I dont understand anything , or what she's saying.

                in short, I blogged here, cause ..after reading, I figured I'd bring my son ,
                to one of those spinecore things, in NY in dec, if ...the childrens national hostipal specialist, doesnt ...do anything ? next week at appt,
                wait and see ..not sure If I can, thinkng maybe I should but I dont know
                I don't know ..even excerises, pt , whatever , wanna do something feel so helpless.
                snow

                Comment


                • Originally posted by concerned dad View Post
                  I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.
                  Yes, I just replied to you, Snow, on another thread - I think entitled "Spinecor Brace for Adults".
                  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 concerned dad View Post
                    Hi Snow,
                    yes, most of us parents can totally relate to what you are going through right now.

                    And thank you to both you and your husband for the sacrifices you are making for our country.

                    I agree Snow, thank you for your family's sacrifices!

                    Comment


                    • Snowwhite832,

                      You will find SRS specialists at Children's National. Just FYI, parking can be horrific there (in the parking garage) so go early so you don't stress about getting to your appointment (they do have a valet, as well, which IIRC is either free or nominal)...unless you are going to the Fairfax annex (I see you are in MD), where it's not a problem. Be sure to make a list of all your questions so you don't get "lost" during your appointment (it's easy to forget everything once you're in there), and not be shy about asking the doc any additional questions about anything you don't understand that comes up in the appointment. Your doc will not be a spinecor fan, so don't be surprised by that, very few are.
                      Last edited by mamandcrm; 11-04-2009, 05:51 AM.
                      mamandcrm

                      G diagnosed 6/08 at almost 7 with 25*
                      Providence night brace, increased to 35*
                      Rigo-Cheneau brace full-time 12/08-4/10
                      14* at 10/09 OOB x-ray
                      11* at 4/10 OOB x-ray
                      Wearing R-C part-time since 4/10
                      latest OOB xray 5/14 13*
                      currently going on 13 yrs old

                      I no longer participate in this forum though I will update signature from time to time with status

                      Comment


                      • Well we had an xray done yesterday. Emily's curve is 17 degrees in brace. I'm okay with that considering her age and amount of growth the past few months. Last xray (6/09) she was 27 degrees out of brace. So the brace seems to be giving her some correction, we will stay the course at this time.
                        Emily's mom-11 1/2 years old
                        28 degree scoliosis 9/04
                        Chiari Malformation/SM decompressed 11/04
                        17-24 degrees 11/04-6/07
                        Wearing Spinecor Brace since June 07
                        3/31/10- 29 degrees oob
                        11/18/09 17 degrees in brace

                        Comment


                        • Great news!!!! What a nice reduction since the last xray - especially since she's approaching that "dangerous time" of growth. Woo hoo!
                          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


                          • Just a quick note in case it may help someone:

                            Should you decide to go to Montreal for treatment and plan on submitting an insurance claim, be SURE to ask them to indicate the currency used on the receipts.

                            For us, we paid in US dollars for the brace and in canadian dollars for the xrays. Our insurance company assumed that the charges were all in CN dollars.

                            I guess my point is, with all the busy and stressful activities going on during someones first visit, you may want to make a mental note to ask them to write US or CN on the receipts as appropriate. It may make life easier later.

                            Comment


                            • Just a quick update on Bella - she saw Dr. Rivard yesterday. She is still holding at 14 degrees in brace

                              I guess the lack of bad news is good news in this case. She grew since her last appointment (my husband did not ask for exact height measurements), but she definitely grew and her curve is staying the same
                              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


                              • Glad to hear it - stabile curve after growth is a good thing! Happy Thanksgiving!
                                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

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