Announcement

Collapse
No announcement yet.

spinecor

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

  • Laura,

    Most doctors seem to say that the margin of error is 5 degrees. However,
    last August Emily's ortho read her xray at 17 degrees, six months later he read it at 23 degrees. He concluded that the curve was unchanged, yet told me to come back in 4 months instead of 6 months. So was he "sure" that the curve was not progressing, thus willing to let her go for four months to see what happens or was he "unsure" as to whether she was progressing, so erring on the side of caution by having us come in sooner. Her other ortho, also has maintained that there is no progression (Yes, I do see two, about every six months-and I bring the xrays from one to the other-You can bet that they love me). Neither of them saw any need for bracing, nor any need for the Spinecor. Nor do they know about it yet. I plan on taking my next xray-hopefully with a VERY small curve to show both of them.

    What I'm trying to say is that even though the doctors claim that progression
    is anything over 5 degrees, they don't seem to act on that. Noone will suggest anything but waitng and watching for Emily until she is at least at 25 degrees. They further have told me repeatedly that no curve will progress more than 1 degree per month. So more than 6 degrees in 6 months is impossible according to them. However, I have seen NUMEROUS cases here where curves have progressed much quicker than one degree per month.
    They do not seem to be as hung up on the numbers as we are.
    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


    • Michelle - I would do exactly the same thing in your position. I only wish that we had caught this curve earlier. Thanks for your comments
      Last edited by RugbyLaura; 07-19-2007, 11:15 AM.
      UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
      10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
      Surgery due to take place early December 2011 at the RNOH, England.

      Comment


      • Hi all!
        Rachel`s curve has progressed since our last visit. She is now 26 thoracic and 26 lumbar. It looks very different on x-ray to me, also. I don`t believe it could be just measurement error. Nonetheless, I agree with Dr. Rivard, her curve would at least be in the 60`s without the Spinecor, by now. I don`t think the Milwaukee brace would have offered her more. I have never seen where one of those produced any correction at all. I could see that he was visibly saddened to have to tell me there was any progression. He is such a lovely man! Dr. Coillard was wonderful as well. I love them both.

        I asked about the x-rays. They are only PA and lateral and only include the spine. They are not whole body, 360 degrees. The exposure is 10% of regular. They did use the sheild for the ovaries,but feel the breast shield often covers some of the spine in scoliosis patients. THe explanation was satisfactory, I felt.

        I asked Dr. Coillard why she didn`t recommend osteopaths. SHe said they are good for pain, but there has been no evidence that they can help a curve. I meant to ask what she thought held these stubborn curves in place but couldn`t remember anything else, even though I knew I had some questions. If anyone is going soon, ask them for me. I may e-mail. I don`t know if they have the time.


        It made me sad to post. I know you are all disappointed, but keep up the good fight!

        Much love!
        Cheryl
        God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

        Comment


        • Cheryl,

          I know that even a few degrees progression is disappointing, believe me. But 26 is still relatively small and less than it was when she started with the brace.

          David's curve has always fluctuated a bit - up 4 degrees one visit, down 6 the next, etc. I was told it means his spine is somewhat flexible.

          Stay strong - she has a few more years of growing left to so and you are still not near surgery levels
          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


          • cheryl, I know what you feel like, this deflated feeling is terrible. I am sure you find strength somewhere, as you always seem to do, to keep fighting, and yes, it could have been so much worse.

            gerbo

            Comment


            • Thanks my friends,
              You always do seem to find the appropriate words.
              Cheryl
              God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

              Comment


              • Cheryl,

                Hang in there. We all can only do so much. There is a lot out of our control. Any idea how much correction she is getting and how much her curves are measuring without the brace?
                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


                • No, I don`t know if her curve without the brace has progressed. I know you have to go a while out of brace to get an accurate measurement. I don`t want to do that. We are hanging in there!
                  God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                  Comment


                  • Cheryl,

                    I have sent you a private message. So sorry to hear about the change. Did Dr Rivard have any opinion on what might happen from here?

                    Maria is right, 26 is so much smaller than it was when Rachel started with Spinecor! You have been such a help to me, I wish I could say more to help you.

                    Imogen woke up with a temperature of 103.2 this morning. Have got it down to 101.2 using Calpol & sponging. Poor little thing is so upset as it's the last day of the school year & should have been a great day!
                    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                    Surgery due to take place early December 2011 at the RNOH, England.

                    Comment


                    • Michelle, hope all goes well for Emily today.
                      UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                      10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                      Surgery due to take place early December 2011 at the RNOH, England.

                      Comment


                      • Laura,

                        Thank you for you thoughts. Our appointment is at 9:00 am (est). I didn't
                        sleep to well as I'm sure most of you understand. I'll write as soon as we get back home.

                        Michelle
                        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 everyone,

                          Well our appointment went very well. Emily's curve is now at 14 degrees in brace. Her rotation is at 6 degrees. The doctor noticed a considerable improvement in her posture. So overall it went very well. We will again go back in 6 weeks for another follow up.
                          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


                          • thank god for some good news!! congratulations, you must feel so relieved

                            Comment


                            • are you OK cheryl? strictly speaking it wasn't that bad, or was it? You were kind of expecting it? Just this sense that the "control over events" you had before seems to be gone which makes you feel so much more insecure about what might happen or not happen next. (just describing my own feelings here)

                              maybe we all are a bit to obsessed with this scoliosis thing and need to chill a bit and accept that we cannot have control over everything and that there is life after or next to scoliosis as well....., but it can be hard...... (specially for control freaks as we all seem to be)

                              gerbo

                              Comment


                              • Great news Michelle!

                                Gerbo, you're so right, we should try to chill. It's just so hard....
                                UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                                10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                                Surgery due to take place early December 2011 at the RNOH, England.

                                Comment

                                Working...
                                X