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  • Boston Brace or Spinecor

    Hi all,

    First, thank you so much for all who post on this board. The issues and information listed here is a valuable help especially to us newbies. My 15-year-old daughter just got diagnosed with Idiopathic Scoliosis and was put into a Boston Brace last week. I guess I don't need to tell anyone how miserable she is especially being a 15-year-old high schooler. She has always been so active and this brace definitely restricts alot of her movement. I felt there had to be something better out there and heard about Spinecor. Spinecor sounds perfect for my daughter, but I am worried because it is new and there is not alot of "long term" data out there. Her curve is about 38-39 degrees. Has anyone else out there have an older child on the spinecor brace? I would be so grateful to hear any and all thoughts on this. My daughter just had her in brace x-ray and it came back with about 31 degrees. I was hoping for a better correction. I spoke with the doctor here in Connecticut and he was neither for nor against spinecor. His recommendation was that if I decided to do spinecor, I should go to the team in Montreal who created it. I have been reading about them here on these boards and they sound great. I was also told by the doctor here that you can hope for a correction wearing the boston brace, but in reality it is considered a success if the curve does not progress. My daughter would love to speak to someone in a spinecor brace and see how they feel about it. Is spinecor even a choice due to the age of my daughter? Again, any feedback would be great and thank you.

    Dee

  • #2
    Originally posted by Dee14
    My 15-year-old daughter just got diagnosed with Idiopathic Scoliosis and was put into a Boston Brace last week. I guess I don't need to tell anyone how miserable she is especially being a 15-year-old high schooler.
    Hi Dee,

    No, you certainly don't need to tell me how miserable a brace must be for a 15 year-old girl. My son wore a brace from the time he was 2 until he was five and a half (when he had vertebral body stapling) - and all I kept thinking of was how tough it would be when he got older. I knew because I also have a daughter (now 17) and a son, 20. My daughter hated getting braces on her teeth! They just hate to be "different" in any way.

    My heart goes out to you and your daughter.

    As far as Spinecor, all I can suggest is that you do your homework. At her age, with a curve in the high 30's, the Spinecor brace may not be as effective as it is for younger kids with smaller curves - however, if she has to be braced, then perhaps it would be easier for her than a Boston brace.

    I'm just a little leery because kids similar to your daughter (older kids with curves over 30) did not fare too well with the Spinecor and several went on to fusion. I'm not saying that would happen for your daughter, but I cannot in good conscience, ingnore those facts when giving my humble opinion.

    You might also want to check out vertebral body stapling (VBS) - although, at 15, your daughter probably would not be a candidate (although I am assuming that since they braced her they feel she has some growing left to do). In any event, just in case you were interested, there is a website where folks who are interested can get some info - www.vertebralstapling.com

    I sincerely hope it does not come down to it, but there are some other alternatives to fusion in the event that your daughter would require surgery. Again, I hope she can avoid it, but best to be armed with as much info as possible on the different alternatives.

    Good luck to you!
    Last edited by mariaf; 05-28-2008, 11:33 AM.
    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


    • #3
      Originally posted by mariaf
      Hi Dee,

      No, you certainly don't need to tell me how miserable a brace must be for a 15 year-old girl. My son wore a brace from the time he was 2 until he was five and a half (when he had vertebral body stapling) - and all I kept thinking of was how tough it would be when he got older. I knew because I also have a daughter (now 17) and a son, 20. My daughter hated getting braces on her teeth! They just hate to be "different" in any way.

      My heart goes out to you and your daughter.

      As far as Spinecor, all I can suggest is that you do your homework. At her age, with a curve in the high 30's, the Spinecor brace may not be as effective as it is for younger kids with smaller curves - however, if she has to be braced, then perhaps it would be easier for her than a Boston brace.

      You might also want to check out vertebral body stapling (VBS) - perhaps your daughter would be a candidate (IF you were inclined to go that route). There is a website specifically devoted to stapling - www.vertebralstapling.com

      I sincerely hope it does not come down to it, but there are a lot of good (non-fusion) options out there should your daughter require surgery. Again, I hope she can avoid it, but best to be armed with as much info as possible on the different alternatives.

      Good luck to you and feel free to e-mail me as well!
      For another option you may contact Luke Stikeleather , Orthostist at (703) 849-8808 for the Rigo-Chaneau Brace.

      Comment


      • #4
        If you want to talk directly with the Montreal doctor (Dr. Rivard) he responds to phone calls and emails usually pretty quickly too.

        He can be reached at:

        Phone: (514) 345-4839
        e-mail: charles-hilaire.rivard@recherche-ste-justine.qc.ca

        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


        • #5
          Originally posted by BETall
          For another option you may contact Luke Stikeleather , Orthostist at (703) 849-8808 for the Rigo-Chaneau Brace.
          I'm not completely against bracing in all instances, but the point I was making was that having a teenage daughter myself, who just turned 17 this month, whether we are talking a Boston brace, a Cheneau brace, or ANY brace, they are STILL going to be miserable wearing it to high school, around their friends, etc. It's just the nature of the beast (teenagers!) to want to fit in and be the same as their peers.

          I recall when David had his stapling surgery he was only 5 at the time. My daughter was 12 then and my son was 15. I was really having a hard time with the fact that I was making the decision FOR David to have surgery, so I asked my older kids what they'd want me to do if it were either of them. I still recall my daughter's response (my son's was similar) - she said "Mom, you know I'm a real baby when it comes to stuff like that - I even hate getting needles at the doctor's - BUT I'd rather have the surgery in a heartbeat than have to wear the brace" (she was referring to the TLSO David used to wear).

          Just the perspective from my household...........

          Again, good luck Dee!
          Last edited by mariaf; 05-28-2008, 08:31 AM.
          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


          • #6
            Dee, My heart goes out to your daughter. We don't have experience with a Boston brace, but it would seem that Spinecor is an easier adjustment for an active child because you have the flexibility to do all your activities in brace (other than swimming). Having said that, of the results that are out there so far, it does seem to have a better chance of working for those who have smaller curves. Your daughter's curves are larger than what would make her an "ideal" candidate. However, as Ruth posted earlier, Dr. Rivard is very willing and able to speak on the phone with anybody considering spinecor -he spent a good 15 or 20 minutes on the phone with me when I was trying to determine what to do with my daughter. There is no harm in giving him a call and explaining your situation and seeing what he has to say. Obviously over the phone he won't have all the info he needs to answer all your questions, but maybe you can get enough of a sense to feel that either it's not worth pursuing or alternatively that it is worth a trip up to MOntreal to potentially try it out. Good luck!
            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


            • #7
              in-brace correction

              Hi Dee,

              I saw your post and completely understand how hard this must be for your daughter and you. I'm curious, since she is 15, how much longer does she have to wear the brace? It seems like most 15 y/o girls are done growing or nearly so.

              Also, you mentioned the in-brace correction is at 31 degrees (down from 39 unbraced). Usually with a boston you want about 50% correction of the curve, in-brace. What did her orthopedist say about the in-brace x-ray? And I think someone pointed out that the goal of the brace is JUST to try and prevent progression, not achieve permanent correction. So even if the brace corrects her curve some while she is wearing it, the expectation is that the curve will revert to its original size once bracing is discontinued.

              Good luck,

              Gayle
              Gayle, age 50
              Oct 2010 fusion T8-sacrum w/ pelvic fixation
              Feb 2012 lumbar revision for broken rods @ L2-3-4
              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
              2010 VBS Dr Luhmann Shriners St Louis
              2017 curves stable/skeletely mature

              also mom of Torrey, 12 y/o son, 16* T, stable

              Comment


              • #8
                Dear All,

                First, thank you so much for your ideas and wonderful kind words of support. From reading what all of you have personally gone thru, I so admire you. Although we all have carried concerns and worry, it is our children who are truly amazing. Some of you are asking questions that I am finding difficult to answer. Let me give some background. The doctor first noticed Arielle’s (my daughter) shoulders were off about 1 year ago. At that time, they said they would keep an eye on it. Then this past December, they suggested getting an x-ray to see where we stood. They told me they would call me if there was anything to be concerned about. Well, I did not hear from anyone, so I thought everything was ok. When making a routine appt for my son, I asked about the x-ray just out of curiosity. The doctor called me back apologizing profusely saying that the lab had sent the x-ray to the wrong pediatricians office and I should get Arielle to a Orthopedic right away because her curves on the x-ray were about 31 and 25 degrees. I was floored. This x-ray was from 3 months ago. I am upset with myself because I feel that, one, I should have insisted on an x-ray a year ago and two, I should have not waited for a call back on the x-ray. I feel terrible, that I somehow let my daughter get to this point. I should have investigated the possibilities more instead of solely trusting my doctor. The second mistake I think I have done is taking my doctors recommendation for an Orthopedic. We have seen him twice, and he keeps “estimating” the curves. I was told that the x-ray says Arielle’s curves are 31 degrees, but this orthopedic doctor says she is “about” 39 degrees as he is trying to use the computer to figure out the angle (not very well I might add). And he says her in-brace correction is “about” 31 degrees. He talks down to us and quotes statistics. Arielle does not like him at all. He does have an excellent reputation as a surgeon, but I wonder about child bracing. I now realize (from listening to you on the boards) that I need to find a Pediatric Orthopedic doctor. If anyone has a recommendation for one in this state (CT), I would love to hear about it. Since I feel so responsible for Arielle’s condition, I am very nervous about Spincor. I don’t want to make any more mistakes and I don’t want to make her back any worse. But she came home crying again today. She does not want the brace anymore, she wants her old clothes back and she wants to be able to bend over to tie her sneakers. She also says her back feels weaker with the brace off. Is this normal? Thank you for the suggestion and information to call Dr. Rivard. I will call Dr. Rivard, but I am not sure what to tell him when he asks about the curves. Do I say it’s “about” 39 degrees, but the x-ray from 3 months ago says 31? He ought to love that. Can I request another x-ray out of brace? Would it show her true curve? And which curve should I believe? The one stated on the x-ray or what the doctor tells me? According to the doctor, we did not achieve the “50%” Boston Brace correction because Arielle is older and her spine is “stiffer”. I still think she has a ways to go in her growth, but again, this doctor disagrees. He thinks she will be done in about a year with some smaller growth until age 18. Thank you all for responding and sharing your insights. I feel alittle lost these days, so it helps a lot to hear other peoples ideas and suggestions.

                Dee

                Comment


                • #9
                  Hi Dee,

                  Please don't beat yourself up. You have no evidence any brace would have held her curve. Some orthopods don't brace AT ALL or only use a night-time bending brace because they don't feel the efficacy has been proven enough to justify making a kid wear the thing all day.

                  In re the "about x degrees" thing, the measurement error on the angle is often said to be about 5 degrees. That means the actual angle is extremely likely to be within a range of the number you were given plus or minus five degrees. That is a range of ten degrees total. Given that, anyone who gives you an exact angle rather than hedge it with "about" is the person who is not being as accurate and precise as warranted.

                  Moreover, if you have ever looked at these films, especially with ones that have measurements on them, I suggest that the SAME person doing the measurement three times in a row will get at least a 2-3 degree range in answers.

                  Finally, I have seen some folks claim that the angle measurement is actually less precise than even the plus/minus 5 degree range. Different surgeons might measure from different vertebrae depending on whether or not they think certain levels are involved or not. Thus occasionally you see some folks say the measurement is plus/minus even ten degrees.

                  Thus an "exact" measurement isn't possible. You can probably get the repeatability (precision) very high with one person measuring and being VERY careful but the accuracy (picking various vertebrae to measure between) is going to vary between surgeons as the uncertainty of which levels are involved varies.

                  These surgeons do not appear to sweat plus/minus a few degrees as it would be very hard to prove it mattered in terms of treatment course or outcome.

                  Just my opinion.

                  Best of luck.

                  sharon
                  Last edited by Pooka1; 05-28-2008, 09:18 PM.
                  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


                  • #10
                    it's going to be ok, Dee

                    Dee,

                    your post is heartbreaking, I am so sorry you have had such a tough time getting info. I know a scoliosis diagnosis is shocking and upsetting at any time in our kids' lives. There have been other stories similar to yours here recently. Please know you can not change the events that led up to your daughter's current situation. Guilt will not help her spine, so the best thing to do now is focus on finding the very best care you can for your daughter. I would run away screaming from your current ortho based on your description of him.

                    The Scoliosis Research Society (www.srs.org) has a helpful website and a free physician finder. I typed in CT and found 6 that specialize in adolescent scoliosis. You can go to the website, select 'Find a Physician', and type in your state, with 'adolescent' as the specialty. There is also a book you can find at the library that was helpful to me, called "The Scoliosis Sourcebook" by Michael Neuwirth. It has very in-depth discussions of bracing, among other topics.

                    Some of your ortho's comments would make me worry, for what my personal opinion is worth. I would want to know a few things before deciding to subject my high-schooler to a brace. #1, what is her Risser sign (an x-ray determination of how close to skeletal maturity she is). If she is close to skeletal maturity maybe she doesn't need full-time bracing, or any bracing at all. How long ago was her menarche? Also, if the in-brace correction is only from 39 to 31, is the brace helping her at all? If not, she shouldn't have to wear it. Were you able to talk to the orthotist about the in-brace x-ray? And I would definitely want an ortho who could give me an accurate measurement of the curve. You should not have to put up with being talked down too, either!!!


                    Good luck, feel free to ask anything here. There are no stupid questions. We are all trying to do the best thing for our kids.

                    Gayle
                    Last edited by leahdragonfly; 05-28-2008, 08:53 PM.
                    Gayle, age 50
                    Oct 2010 fusion T8-sacrum w/ pelvic fixation
                    Feb 2012 lumbar revision for broken rods @ L2-3-4
                    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                    2010 VBS Dr Luhmann Shriners St Louis
                    2017 curves stable/skeletely mature

                    also mom of Torrey, 12 y/o son, 16* T, stable

                    Comment


                    • #11
                      Hi Dee,

                      Ditto to everything that Sharon and Gayle said - ESPECIALLY the part about not beating yourself up. We could ALL go there but as a friend of mine says "guilt is a useless emotion" and it is NOT your fault.

                      I recall when I first noticed something was "off" with David's back, my pediatrician brushed it off, thinking it was nothing. The next visit I brought it to her attention again and finally, after I insisted, she sent him for an x-ray. So, had I been MORE forceful the first time I would not have wasted precious months. As parents, we just naturally feel responsible when anything goes wrong with our kids, but we do our best and often listen to doctors who are SUPPOSED to advise us properly - if they don't, then it's their fault - not ours. In addition, those little things we did or didn't do often wouldn't have made much difference anyway, so PLEASE do not beat yourself up.

                      As far as recommendations, I know it is a ways from Connecticut but we (gladly) travel from NY to Philadelphia to see Dr. Betz at Shriners Hospital. He has a great team of pediatric orthos there and they see ALL kinds of cases from infantile cases to very severe cases, etc. - even kids with multiple health issues - they are TOPS in the field and the travelling, for us, is well worth it. We have good insurance - and as you know there is no shortage of doctors in NYC - but for this PARTICULAR specialty (scoliosis), I truly feel Shriners, Philadelphia is one of the very best facilities in the country.
                      Their toll free number is 1-800-281-4050 if you are interested.

                      Good luck and feel free to e-mail me as well!!
                      Last edited by mariaf; 05-29-2008, 08:30 AM.
                      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


                      • #12
                        Dee, You're wondering if you should have another set of out of brace xrays taken - I wouldn't worry about that now...first I would find another doctor and let them determine if they need it (i.e. go to SRS website or you couldn't go wrong with Shriners Philly). When my daughter was diagnosed we saw 4 doctors to get various opinions. Within 5 weeks she had 3 sets of out of brace xrays which was more than I liked....the first was the xrays that diagnosed the scoliosis...the second was when we visited the shriners in springfield because they wanted their own xrays, the third doctor just looked at the xrays we had and the 4th (dr. rivard) needed current xrays to ensure he fitted her properly in the brace. So my advice is find a good doctor first - theyll let you know whether another set of xrays is necessary now or whether to wait.

                        Also, Maria mentioned the Shriners in Philly...they are also willing to speak over the phone. You won't speak to the doctor directly, but the PHysician's assistant will speak to you. Although I haven't met with them since my daughter is in spinecor and they don't do spinecor, I had a nice informative conversation with Janet Cerrone, the PA at Shriners. You can call and say that you are trying to figure out your next step and whether you should make a trip to Philly. Give them your daughter's background info and see what they say. I found that with every conversation I had with a different doctor or PA, I learned something new. The folks in Philly really do seem to have a big focus on Scoliosis so it would be helpful for you to hear what they think even if you don't have her treatment with them throughout.

                        It was hard for me to make those phone calls because I'm used to the environment where nobody will talk to you except a receptionist who will only schedule an appointment with the doctor and tell you to bring your $ and insurance with you! I didn't realize there were places like Shriners PHilly and Dr. Rivard where they realize issues with scoli and travel and while they can't render a professional opinion on your daughter over the phone, can help you with some guidance so you can figure out where you want to have her treated.
                        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


                        • #13
                          I don't have any experience with Dr. Rivard's office, but Jill gave a very good account of how helpful Janet Cerrone at Shriners is. I provided the phone number above, but if you prefer e-mail Dee, her address is:

                          janetcerrone@comcast.net

                          She is the physician's assistant to Dr. Betz and the entire spine team in Philly - she's been in this field a long time and is EXTREMELY knowledgable and VERY nice.

                          Again, good luck!
                          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


                          • #14
                            hi dee

                            Again, don't feel responsible, i had similar incident with our first xrays - i had to call my dr 2 months later and only then did she call for the report about 45' curves!!!

                            anyway, i'd also look into the Cheneau brace. IT is an agressive brace but fits well under clothes, Luke Stikeleather in VA makes them as well as someone in CA and in Wisc. If needed I could find phone numbers for you
                            bust of luck
                            helen

                            Comment

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