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  • Thanks for the update. Good news on the rotation.
    Can you elaborate on Lisanna?

    You mention the new brace and the costs. Insurance doesnt cover it in the UK?

    Comment


    • Laura,

      Good news on the rotation.

      Compensatory curves are not an issue as far as I know. Someone correct me.

      I mean both my daughters have (had in Savannah's case) a second curve that is compensatory and the surgeon never mentions it.
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • Hi,

        Lisanna is the daughter of Gerbo - the founder of this thread. Lisanna developed a worrying cervical curve whilst wearing Spinecor. This curve grew to become bigger than the original thoracic one. She is a beautiful ballet dancer and is about 3 years older than Imogen.

        We pay privately for all of Immi's treatment - we could get it free on the NHS but her grandfather prefers it this way (and is paying for it!).

        Laura
        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


        • Thanks Laura,
          I searched back and found the last update here
          Boy, this thread is full of so much heartbreak and promise.
          I wish the best for everyone.

          Comment


          • Laura,

            Glad to hear the rotation has lessened. The compensatory curve is an issue, I'm not sure how I would repond if Emily were to start to develop one.
            I believe Immi got her brace one week after Emily did, to date we are sticking with it, although recently I have been having second thoughts. We will be going to see her orthotist on June 24. So I guess we will continue on until then. Summer here in Miami with a brace is difficult. This week the temps have been in the low 90's. Though Emily hasn't complained at all, I feel badly for her.

            Sharon,
            I think the concern with the compensatory curves is that they develop after (as a result of?) treatment with Spinecor. Are we trying to fix one, while causing another?
            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


            • Originally posted by emarismom View Post
              Sharon,
              I think the concern with the compensatory curves is that they develop after (as a result of?) treatment with Spinecor. Are we trying to fix one, while causing another?
              Okay someone correct me if I'm wrong but compensatory curves go away when you address the structural curve. That's why they are called compensatory, yes?

              For example, my daughter's compensatory L curve completely disappeared when her T curve was fused.

              The surgeon never told me a measurement on the L curve at any point on either girl though they both had/have obvious second curves. That's why I don't think surgeon's are concerned by them.

              My one question is do compensatory curves ever become structural by sheer dint of time? That is, if you don't fuse a T curve fast enough, can the compensatory L curve become a structural curve? That would be a reason not to delay fusion surgery all else equal I would think. I need to bring that up at Willow's next appointment... we may be wasting time in this brace.
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • None of the doctors I have seen have ever commented on Emily's comp curve, except to measure them and say that it is there. They have basically disregarded the comp curves. I think the "issue", if it really is even an issue, came up several years ago when several parents on this thread noticed that while in the Spinecor brace, their children's comp curves began to move in the wrong direction. Most often those curves were in the upper thoracic or cervical areas.

                I think there was also some type of study at one point that suggesested that the Spinecor was the cause of the changes in the curve. Thus some parents were worried, rightfully so, that the treatment may be causing harm.

                This is going back probably about a year and a half ago or so, you may want to do a search on this thread of compensatory curves or something like that, as I really don't remember the details.

                "we may be wasting time in this brace." originally posted by Sharon

                I'm beginning to think that this may be the case in my situation to. Although with my daughter being so young, I don't see where I have any other "viable" options.
                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


                • Originally posted by emarismom View Post
                  "we may be wasting time in this brace." originally posted by Sharon

                  I'm beginning to think that this may be the case in my situation to. Although with my daughter being so young, I don't see where I have any other "viable" options.
                  JIS is a harder situation than AIS but there are still options it seems. Bracing with a soft brace is not out to lunch at this point in my opinion.

                  Once the Chiari is fixed, do most curves stop progressing? I would think so but what do I know?

                  Good luck.
                  Last edited by Pooka1; 05-12-2009, 11:57 AM.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • Laura, I'm glad the rotation is better, but bummed to hear about the high thoracic/cervical curve. You say it looks worse - did she have one all along or did it develop after spinecor? Did they see what appeared to be the worsening curve while she was in her brace or did it not show up until she was out of it? sigh - i hope when you go back you find out the curve is not bigger. did the dr. seem concerned about this? Is he aware it has been an issue for others?
                    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


                    • Sharon,

                      The hope is that once the Chiari was fixed, the scoliosis will improve or stabilize. Which has been the case with Emily. She improved some and has been stable. The problem is that IF a chiari related curve begins to progress, it usually progresses very rapidly until surgery is required. The short term studies 1-4 years post op (cranial decompression) seem to indicate that stabilization/improvement is the norm. The longer term results are not as consistent and there aren't very many long term studies.

                      My hope with the Spinecor was first and foremost to by time, which so far we have done. Then of course to see some improvement in the curve, which in brace may be happening. However, I did have an out of brace xray last year which was the same as the pre bracing number. So the jury is still out on if the brace is really having any effect.

                      Since it is not having any really negative effects and compliance hasn't been an issue, I've stuck with it. It is hard though in summer. I just keep thinking she is entering a major growth spurt soon and don't want to take her out at exactly the wrong moment.
                      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


                      • C curve was first noticed about 6 months into Spinecor.

                        It appears to have grown worse.

                        Mr Mills draws little Xs on Immi's vertibrae and at this visit pointed out that one is quite obviously out of sequence with the others - I would say somewhere around C5/C7. He said that this indicated that something structural was going on. We are feeling a bit flat about it all at the moment.

                        Immi has had enough of the whole brace thing after nearly 2 years (and I guess she's at that age now where appearance is becoming more important and she is starting to question things). I have just spent half an hour mopping her tears and telling her to just hang on for a bit longer - this is hard to do when you don't even know whether the brace is now doing more harm than good.

                        I have loosened the #4 strap that was pulling her shoulder down and am letting her have vast amounts of time out of brace. Am I a bad mum?
                        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


                        • Originally posted by RugbyLaura View Post
                          Am I a bad mum?
                          NO!

                          Go with your gut.
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • Laura,

                            You are a wonderful mother! You have spent countless hours searching for help for your daughter, that doctors are unwilling or unable to provide! I have gone through this journey with you for the past two years and a "bad mum" you are definitely NOT!!

                            As I said earlier, I too am having my doubts at this point. You need to do what you feel is the right thing. Have you considered taking Immi to another orthopedic and having an out of brace xray done to have a comparison. I did this last year, and am considering it again. The thought of exposing these girls to more xray radiation is scary, but my ortho once told me that she is exposed to 4 times more radiation simply flying cross country. Since we fly often, I'm beginning to wonder if having an extra xray or two is really such a big deal.
                            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


                            • Laura, you are NOT a bad mum!

                              So when Dr. Mills said he thought there might be a structural component, did he address whether he thought the brace was causing it? Did he loosen the number 4 also?

                              You know, since you're giving her some more time out of brace anyway, maybe you should take it off for a couple days and get an out of brace xray to get a sense of the magnitude.

                              It is so hard sorting through all the decisions we have to make. When Katie was first diagnosed i wished she didnt have itat all (as i'd guess we all did). Now that Ive accepted that she has this, I wish that she was 12 when she was diagnosed with her 19 degree curve...
                              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


                              • Thank you my lovely friends.

                                I am feeling a bit happier this morning - you know how it is; it breaks your heart to see them so sad.

                                Mr Mills did adjust the brace - #4 now does up at the front, so wraps around her whole body. His reasoning behind this was to pull the shoulder back rather than down. My husband said that he became a little more sceptical at this point and felt that there was an element of making it up as he goes along. I'm sure that this is not true, but it is unsettling.

                                We are going to wait until we see her consultant in early August before making any drastic decisions - in the meantime we shall be more relaxed about the brace. We have moved our holiday to after the appointment just incase we end up taking it off altogether!

                                Thank you for your support! It's so good to 'talk' to others who know how this whole thing feels. I have plenty of good friends who are very caring and (mostly) sympathetic but they don't *really* know what we're going through.

                                I also feel very about guilty voicing my doubts on a public forum - Spinecor has been wonderful for Immi; her life has been much more bearable than it would have been with the rigid alternative. I don't want our experiences to put people off - but I do think that we have a duty to report all experiences; good and bad.

                                Laura
                                Last edited by RugbyLaura; 05-13-2009, 03:40 AM. Reason: ususl typos and poor grammar
                                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

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