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  • Seeking help for our son's scoliosis

    Thank god! There are a lot of useful information, suggestions and supports form this Forums. This is my first post. Our son is 13 years old and was diagnosed with scoliosis when he was 10. Since his scoliosis was mild (about 16 degrees), he did not receive any treatment at that time. His orthopedic surgeon Dr. H had been monitoring and taking x-rays for him during the past 3 years. Since his orthopedic surgeon Dr. H told us his scoliosis was mild and we did not have any family history, we would not have to worry about it. No further suggestions and discuss from his orthopedic surgeon besides monitoring him by x-rays ( the curvature went from 16 to 22 degress, then 33 degrees last years). His orthopedic Surgeon Dr. H told us cause of our son growth spurt, his curvature has become worse - up to about 33 degrees in June last year. His orthopedic surgeon Dr. H started him on the Boston Brace with regular check ups scheduled every 3 to 4 months. He wore the brace at least 20 hours a day. However, during the visit in April 2007, his curvature had increased to 40 degrees with the brace. The brace did not seem to help much, and the muscles around his back were weakening as well. Without the brace, his back seems to have a decreased awareness of body position and muscle control. We discussed with Dr. H if there is any traditional and alternative treatments not involving surgery. He was not helpful at all and strong recommended surgery is the best options.

    We found out this Forums and got a lot of information in May.We also traveled to Montreal and switched to SpineCor around the end of May. The brace did correct his curvature to 31 degrees. He feels more comfortable and has more flexibility with SpineCor which has allowed him to participate more in different sports. Also, when he is not wearing the brace, he feels his muscles are stronger and able to support him better. However, the follow up result was not optimistic last week. The curvature had increased to 39 degrees (in brace). We are concerned that with the current brace we are not achieving as much correction as we should/ could be getting, and as we are due a new brace anyway, we are reconsidering our options.

    His curvature is 44 (T6) without the brace now, he does not feel any discomfort. He still has 3 more years to growth by his bone age. We were informed that surgery was an option that had been recommended early by his orthopedic surgeon Dr. H. The option of surgery poses a huge concern to us for many reasons. The largest concern is the percentage of paralysis. Therefore, we went to get second opinion from Children hospital. Dr. E is very helpful. He discussed with us all the options at this stage. And he suggests us to try the Chevaue brace if we go with the non-surgical option. He mentioned the SpineCor would be benefit more for the young age children with small curvature. Our son is older and the curvature is bigger. It would be benfit him to try the Chevaue brace before surgeon scheduling. We are willing to try anything since our son is very sensitive about the surgery. Our ultimate goal is to avoid surgery if possible. It would be helpful if we have Dr. E as our son’s doctor the past three year, we would be more knowledgeable about all options of scoliosis. Also don’t wait to take action – we did, based on his orthopedic surgeon Dr. H advice to wait, and we are sorry now we did and we went out of time.

    We are well aware of the importance to not miss any step regarding his treatments at this stage. Is there anyone try the Chevaue brace who would like to share your experience? We would like to know if there are the differences in between fitting brace in Barcelona versus and in the USA by orthotist Luke Stikeleather. Approximately how much does it cost for the treatment? What is the different between Chevaue light and Cheveaue?
    We would be grateful for any advice and experience you might be able to provide and help us to settle our anxieties. We are looking forward to hear from you.

    Thank you.
    Pat

    Boston, MA

  • #2
    Hi-
    My son is also a patient at Boston Children's Hospital ( I think he also sees the same drs as you - DR. H & Dr. E).

    Nathan is 11yrs. old with a 38 degree curve. He has been in a boston brace for 3 months and hates his brace. He is going to be having the vertebral stapling procedure done on Dec. 10th with Dr. Hresko, and Dr. Betz from the Philly Shriners is coming for the surgery also as it is the first one to be done in Boston. We decided to do the stapling because Nathan is very active, doesn't like his brace, and still has LOTS of growth ahead of him (Risser 0). I completely understand your not wanting your son to have surgery, it just seemed like the best option to fit our son's needs. Have either dr in boston mentioned this option for your son, or are his curves above 45 degrees now?

    I know it is frustrating that your son's curves have progressed. But, this may have been the case even if he had been in a brace for the past few years. Unfortunatly, none of the treatments for scoliosis are 100% effective - most seem to be about 50/50 really..............It is a very frustrating condition to treat.
    I don't know anything about the brace you mentioned, but hopefully somebody here will offer some helpful advice to you.

    -Cara
    Nate's Mom
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

    Comment


    • #3
      re:

      Hi Cara,

      Thank you for your replying. I wish all the best for your son's procedure on December. I discussed with the doctor about stapling option back in April when my son's curve was 40. He seemed not to recommend it. Also, I mentioned it when I got my second opinion from Dr. E . He told me the vertebral stapling procedure good for curve degree under 35. However, I think your son still young and risser is 0. I hear Dr.Betz from the Philly Shriners is very experience doctor. Your son will be on good hand. How did you get Dr. Betz to come over here? If you don't mind, could you please keep me posted how is your son procedure goes? My email address: skybonus@yahoo.com

      Thanks,
      Pat

      Comment


      • #4
        Thanks, and I would be glad to keep you posted. My son has a care page set up, I will e-mail you the info so you can read it.
        How old is your son?
        Scoliosis is scary sometimes, because it seems to me to be very unpredictable. For me it is a struggle between subjecting my son to a treatment (be it surgery or a brace) that may not be necessary if it weren't to progress, to waiting and having it progress to a point where he would need fusion.........if only we had a crystal ball
        Take care,
        Cara
        Cara, Mom to Nathan
        Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
        Boston Back Brace 8/07 – 12/07
        VBS 12/10/07 Boston Children's Hospital
        Dr. Hresko
        40 Degrees before VBS
        11 Degrees now!! (2012)

        Nathan's VBS Video

        www.vertebralstapling.com

        Comment


        • #5
          I think you are in great hands in Boston. But, if you don't have 100% confidence in the recommendations being made, keep looking. You MUST have 100% confidence in what is being suggested for your child. Very hard, I know.

          I'm assuming your son has had an MRI to rule out any spinal cord malformations. If not, I suggest you ask about that, especially since there is no family history, he was diagnosed at a young age, he has muscle weakness after wearing a brace, etc. Peace of mind would mean a lot in this case.

          Good luck and keep us posted.
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

          Comment


          • #6
            Hi Carmell,

            You're right. Our son had an MRI to rule out any spinal cord malformations, when he was diagnosed with scoliosis at age 10. Therefore, Dr. H told us not to worried about it. He had been monitoring and taking x-rays for him during the past 3 years. Our son 's curvature has a big changed in April this year due to his growth spurt. It's very scary, it seems to be very unpredictable.The option of surgery poses a huge concern to us for many reasons. The largest concern is the percentage of paralysis. We will try the Chevaue brace, hope it works for him.

            Thank you.

            Pat

            Comment


            • #7
              Question about Braces

              Is the Cheneau brace the same as a TSLO brace? Luke told me that if and when a brace is prescibed for my daughter, it should be a TSLO brace. Is TSLO just a term for a generic brace or does it mean sort of "open-ended" at the discretion of the orthotist?

              Also, is the Cheneau brace meant to go along with the Schroth therapy or is Schroth effective with any type of brace?

              I want to understand about the various types of braces and why one would be prescribed over another. So far I have heard of the "east coast cities" (Boston, Providence, Charleston, Milwakee, ...), Cheneau, and SpineCor.

              Thanks!
              Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
              Oct 2007: T-20, L-20 [160 cm]
              Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
              May 2008: T-16, L-7 (in-brace) [164.2 cm]
              Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
              Feb 2009: T-20, L-18 (in-brace) 2nd brace
              Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
              Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
              Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
              Mar 2011: T31, L20 (out) [176.2]
              Jul 2012: T31, L20 (out) [177.2]

              Comment


              • #8
                A Cheneau brace is quite different from a TLSO (Boston) brace. It is a hard brace and is, from what I have heard, combined with a physiotherapy/ home exercise program. If you google Images "Cheneau" and "Cheneau light" you will see one. It is my understanding they are very much custom made for each child using the latest computerized technology. One world expert I have heard of who makes the Cheneau Light brace is Dr. Rigo in Spain. The Cheneau Light is the latest version of this brace.

                Ruth
                Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                Comment


                • #9
                  Re: BeTall

                  Hi Betall,
                  Thank you for your supporting. It was nice to talk with you. My email address skybonus@yahoo.com

                  I have not get an appointment with orthostist Luke yet, since he is out of office about two weeks. Could you please email me the other orthostist in CA? I will try to contact him as well. I will keep you posted.

                  Thanks,
                  Patty

                  Comment

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