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  • Christine2,

    I'm sending both of my kids to a camp they have been to before. Last year I didn't send them anywhere (I am a teacher, so I'm home in the summer). It's just that there is NO WAY I am staying home with my 12 year old son again all summer. I don't want to be the entertainment committee anymore. Since Tristan is going, Emily wants to try it. She does have the option of not going, but I feel bad for her to be "bored" with "noone to play with".

    The doctor who braced her said that if she is at 10 degrees out of the brace when we get an xray in June, that he may take her out for awhile and see how she does. I'm not sure I agree with taking her out of the brace completely, even for just a few months to see what happens. But the idea of taking her out of it during the day for the summer months is really becoming appealing. I am so confused right now. I really WANT to take her out, if the curve is low. By the same token, I'm terrified that if we give her a break, she will enter a growth spurt at just that moment.

    All through the past year having her in the brace has really seemed easy. Lately, it seems we are all just not handling it as well.
    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


    • emarismom,

      I hope her out of brace curve is around 10 degrees! I would feel the same as you do, especially since Emily is hitting the age where the spine grows more quickly. I suspect if I were in your shoes I would still have my daughter wear her brace much of the time...but instead of her wearing it 22 hours a day, it would great to be way more relaxed about it...and if once or twice a week there is a pool day where she would be out of brace for 6 consecutive hours or so it would be so nice to not have to worry since it would still be better than the "doctor's orders"

      I have wondered what people wearing braces (spinecor as well as the other types) do in the summer since swimming and playing by the pool time increases drastically.
      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


      • Last year I bought an above ground pool since I was home with the kids. Emily would take two hours out of the brace in the morning. Then dry off and quickly put on the brace. Then in the afternoon she would go back in for 1 hour 45 minutes, then run straight to the shower. It became our daily ritual.

        By the end of the summer the kids were bored with the pool and only wanted to go in it when they had friends over. That pool really did help her get through last summer, but this year neither of the kids wants me to set it up again.

        Emily has been allowed to wear her brace for 20 hours a day, not 22. The Spinecor is so much better than a hard brace, and I am very grateful that we have been able to chose this path. But having said that, this path is filled with bumps and turns too.
        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 All,

          Theresa - I'm thrilled for you that the brace is working so well for Shae (and envious that you caught the curve so early!). I sorry to hear about your husband's problems & wish him all the best for a speedy recovery.

          Marlowe - if you're reading this - just to say that Immy has never had any problems with bed wetting (pre or post brace). I certainly agree with Cheryl that it needs checking with your doctor but would also say that my son (no brace!) has the odd "accident"; generally when he is extremely tired. Perhaps Halle is just adjusting to the brace and things will be back to normal (or as near as possible) soon.

          Michelle, we're holidaying in Florida in August this year - probably not the best decision ever! Even given the size of Immy's curve I am going to ask her consultant what is the minimum time she can get away with wearing the brace. I am seriously contemplating leaving it behind

          Has anyone travelled through airport security with a child in a brace? Last year (pre-Spinecor) we flew to Paris and Immy had to go through the machine 4 times, taking off different things each go, as she kept setting the alarm off. She was really embarassed. It turned out to be her jeans popper! I dread to think what will happen with Spinecor!!

          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


          • Laura,

            Firstly, I would not leave the brace behind completely (while I'm sure that Immy would be thrilled too). Yes, the heat is at times unbearable. Over the past month, we have seen too many days around 95 degree with 75% humidity However, when you are indoors, air conditioners are ALWAYS running.

            I would suggest she brings the brace and wears it in the evenings and when you will be indoors. I did take Emily to Busch Gardens last year in August and she wore the brace during the morning hours in the park. As the day got hotter, we took the brace off and I stuck it in my bag. She was fine with it. The next day we did go to a water park where she was out of the brace for 8 hours straight. (The only time we have done that in the year she's been in the brace).

            As for airport security, it has never been an issue. This year we have traveled by plane three times and never has the metal detector gone off with the brace. I usually carry a copy of the Spinecor brochure with me, just in case. (Most of the time I am also carrying x-rays too).

            Hope this helps,

            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


            • Do any of you have a way to contact MJB directly? Her last post about bedwetting has me really concerned about the possibility of diabetes in her child. She said she had an appointment for next Tuesday, but with her last post describing symptoms, I feel I need to contact her. Give her my e-mail and number if you can.

              601-681-8047 cherylplinder@hotmail.com
              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, that's kind of you to take such an interest. I hope she checks back on the board so she can read about your concerns.
                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


                • Headed toward fusion

                  Hello All--

                  I think this may be my last post on the Spinecor thread.

                  A short history: my 12 yo son Sidney was diagnosed with AIS 18 mos ago (T30/L25 approx), and after 6 mo in a Boston brace (9 mo after diagnosis), the curve was progressing, so we switched to SpineCor, thinking we had nothing to lose. After 4-5 months in SpineCor, he was still progressing, so we tried an intensive therapy program (not Schroth; it was something new offered by the chiro who fit the brace) and actually had modest success after a week, but who knew whether it would last?

                  I had promised myself we would check out VBS, so I contacted Janet Cerrone at Shriner's in Philadelphia, and she squeezed us in for a consult with Dr Betz on June 10, which worked because we were to be up in VT for a family reunion and had a day and a half to make the (6-hr) drive down and back. We were overdue for a visit with the first ped ortho surgeon we saw, and considered this not only a consult, but a much-needed second opinion.

                  The consult revealed some new information. Although Betz thinks Sidney probably does not have Marfan's Syndrome (he has ordered tests to rule it out), he believes S has enough marfanoid characteristics to indicate that the scoli is not ideopathic. He determined this very quickly by, among other things, looking at a spot on the pelvis on the x-ray, where he saw a "thin space" (there's a medical term for it that I don't have in front of me) that is indicative of Marfan's. Marfan had been mentioned by our first ortho, but S was still classified as having AIS.

                  The bottom line is that Betz believes the scoli is being driven by the underlying condition, and not only is S not a candidate for VBS and/or VEPTR, no amount of bracing will affect the curve. In addition, S now has a second T (compensatory) curve above the main T curve. Betz is recommending posterior fusion T1 or 2 to L1 or 2 within 3-4 months. He suggested we take some time to think, but that in the meantime we get penciled in for a surgery date. We were so impressed with all the Shriner staff, and with Betz and Janet, that we did so (although we have no surgery date yet). We also met with Dr. Cahill, who would be doing the surgery. He is much younger than Betz, has been at Shriner's 9 months, has done about 60 such surgeries, and all he does is work on spines. Janet told us that "in our world," on a scale of 1-10, this would be a "straightforward" posterior fusion--about a 1.5.

                  We had been worried about future growth: Sidney will be well over 6 feet tall--even with his curve he is over 5'7" at age 12. He would be 13 by surgery time. We were told he would lose very little height with fusion, which I have heard elsewhere. We are also concerned about correction--on a supine bending x-ray, the main curve only reduced to about 30 degrees; it appears to be quite stiff. I have read more than once of kids whose curves turned out to be more flexible than originally thought; I hope that's true for Sidney. His main curve measures approx 50 degrees; the other two are about 50 and 40. (They are measured differently by each doc--even on the same x-ray--and we are getting used to that!)

                  I have some questions for anyone reading this:

                  1. Anyone have experience with Dr. Cahill?
                  2. Dr. Betz recommended S wear a rigid brace between now and the surgery. We are very reluctant to do that and told Dr. Cahill so (and that we are willing to continue with the SpineCor). He seemed okay with that. S is very slender and has not much muscle development at this point (it's just the body type--my husband was like that as well, and many others in his family). We are concerned about muscle atrophy. And we wonder: if no amount of bracing would control the curve, how would a brace help now?
                  3. I'd be interested to hear the experiences of parents of boys fused at age 13. It's still hard for me to think about. Sidney is more cerebral than athletic, but he enjoys playing a little basketball, backpacking, whitewater kayaking, and ultimate frizbee--I guess it's good he doesn't go in for full contact sports.
                  4. Anyone else here have a child whose scoli is being driven by Marfan's or Marfan-like conditions? I'd be interested in hearing about that, too.


                  So--that's where we are. I am sleeping okay, but at the moment, my days are real emotional rollercoasters.

                  One more thing: do I regret the SpineCor and other things we've tried? Not at all. For all I know his curves would have been larger without them. And I just had to feel I'd left no stone unturned to avoid fusion. I still believe SpineCor is a good option for lower curves.

                  It occurs to me now that I should have posted this on the surgery thread, but this is where I started, so it seemed right to put it here.

                  I know it's a long post, and appreciate the chance to write it; this forum has been, and I expect will continue to be, a huge help to me, both for support and information. Thanks, everyone.

                  Mary Ellen

                  Comment


                  • Awww Mary Ellen, I'm sorry to hear that S isn't a candidate for VBS and you must be disappointed to hear that fusion is required - however I am glad that Shriners was able to identify what is going on. I have no experience with Dr. Cahill, but have seen very good things posted about him (and Shriners Philly) on the yahoo VBS forum. I'm assuming you have been to that forum? (http://support.vertebralstapling.com...scussions.aspx)

                    When they say Dr. Cahill has done 60 surgeries, is that 60 fusion surgeries or is that aggregating both VBS surgeries and fusion surgeries together?

                    I'm inclined to agree with you that if no bracing is going to hold him (which has been your experience with the boston and spinecor braces), it might be better to keep him in spinecor in the interim so he can maintain more core body tone and have an easier/less restrictive time while waiting for surgery....having said that, I would try to get him on the calendar for fusion ASAP so that his time for further progression is limited. Although frankly, if Dr. Betz/Dr. Cahill felt it was very important to get him in a rigid brace over spinecor in the interim, I would probably defer to them. They seem to be open minded about various scoli treatments and the quality of life of their patients - so if they strongly recommend a rigid brace over spinecor, I would know they are not saying it lightly and would probably follow their advice. In this case it seems like Dr. Cahill is OK with S remaining in spinecor... does Dr. Betz know your concerns?

                    Good luck - I hope you get some good answers to your questions and please keep us updated!

                    Jill
                    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


                    • Hi Mary Ellen,

                      I'm sorry that after all your efforts to avoid, your son will need to have a spinal fusion. My son was 14 when he had fusion surgery, and yes, he did lose a bit of height as he continued to grow afterward. My son is much like Sydney, more cerebral than athletic. I'm happy to answer any "boy" or other questions regarding the surgery, it sounds like he may have about the same # of levels fused as my son. As far as the brace right now, it may just help keep the curve from progressing more rapidly (which could, but not always, mean less correction). Best wishes to you and Sydney, you will be in my thoughts and prayers.

                      Renee

                      Comment


                      • Dr. Cahill...

                        Dear Mary Ellen-- I'm sorry that your son will need surgery, but it sounds like things are falling into place for it. You have worked hard, I can tell, with all you've done for Sidney.

                        You asked if anyone knew anything about Dr. Cahill-- and that is the main reason I'm responding. I googled the Philly Shriners to doublecheck, and the picture and first name match up with the Dr. Patrick Cahill I came to know a little over a year ago. He was finishing up his fellowship in spine surgery at Rush, working with my surgeon, when I had my surgery. I can only testify about his pre-op and post-op treatment, because I don't think he took part in my surgery. (At least his name isn't listed on the op-report.) I found him to be a very thoughtful, helpful and encouraging doctor-- both in my last appointments pre-op, and as I recovered in the hospital. I looked forward to his visits and his encouragement during the 11 days I was in the hospital. I even have his picture in my scoli scrapbook. He's a very nice fellow! I was going to send him a thank-you, but by the time it occurred to me, he was no longer at Rush.

                        That may not help much, but as far as helpfulness, demeanor, and bedside manner go, I give him an A+.
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                        Corrected to 15°
                        CMT (type 2) DX in 2014, progressing
                        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                        Comment


                        • Thanks for your replies. My understanding is that Cahill has done 60 of the kind of fusions recommended for Sidney.

                          Our plan is to get the tests done in late July or early August (S leaves for a month of camp next week--he will of course be wearing his brace during that time)--all at Shriners were okay with that and said that fall would be the earliest he could be scheduled in any case--they just told him to have a fun, active summer. We're just taking baby steps with this, and have not made the final decision yet, but are proceeding as if we have--does that make sense? They can't confirm a final date until we have the test results back.

                          Mary Ellen

                          Comment


                          • Hi Mary Ellen,

                            You know, I never thought of my kids having either AIS or Marfanic scolisois but the idea makes sense. They were diagnosed as having AIS but I think they could equally have Marfanic scoliosis.

                            My girls have most of the skeletal indicators for Marfans... tall, flat feet, long fingers, mild/moderate pectus excavatum as infants/toddlers (has since completely resolved on its own), scoliosis, etc. But the clincher was when I looked up Marfans and it said "blue sclera." My heart sank a million miles... my girls had blue sclera as infants for a period of a few months. I walked around numb for a few weeks after reading that recently. The pediatrician at the time saw that and said it might indicate a rare condition but that I shouldnt worry about it and didn't tell me which condition.

                            I'm going to have them tested for the heart and eye problems. They don't have any eye issues to date so I'm hopeful it's just skeletal with no aortic involvement.

                            Best regards,
                            sharon
                            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


                            • Brace rusting

                              I am reposting this in here because it's regarding the spinecor brace...

                              Has anyone elses spinecor brace rusted? there are 2 spots that have rusted on her brace and I don't know why, she has had her brace since March 20th.
                              Marlowe mom to Halle (age 11)
                              Diagnosed January 11/08
                              In Spinecor Brace for 2 1/2 years

                              In the Cheneau Brace for 10 months
                              Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                              Surgery Scheduled at Sick Kids for May 16, 2011


                              http://hallesscoliosis.blogspot.com/

                              Comment


                              • Sharon:

                                Sidney has excellent eyesight so far, so I'm hoping for him what you're hoping for your girls--no other serious marfan characteristics.

                                Mary Ellen

                                Comment

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