Announcement

Collapse
No announcement yet.

Bracing visit, some perplexing stats, and Janet call

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

  • Bracing visit, some perplexing stats, and Janet call

    So W went today to be measured for the night time bending brace.

    W has been given a 20% of a brace holding her curve by either the orthopod or the surgeon, I can't remember which. One of those guys. It would have been over 50% if he didn't know that her identical twin progressed so quickly and so much.

    I asked the brace guy about the efficacy of bracing in general. He said he only does 5-8 scoliosis braces a year but has been doing it for 28 years and only 2 cases went on to need fusion. So let's take an average of 6.5 per year for 28 years is 182. Now only two of those are KNOWN to have needed subsequent fusion so he is claiming a success rate of ~99% for bracing to avoid fusion.

    Now this does NOT jive even a little bit with my impression from my readings and the testimonials on this and other fora. When I picked my jaw up off the floor,I asked if he would necessarily know if some of those cases went on to need fusion and just didn't tell him. I'm not clear on why he would know either way. I mean once you get the brace and it is determined to fit, don't you just see your orthopod?

    If bracing was known to be 99% effective, why do about half the doctors adopt a wait and watch approach? Why did the orthopod sit there and tell me to my face that some orthopods don't believe bracing works? Is that a complete and total lie? Why isn't this widely known and accepted if true? Why don't all kids go into a brace immediately?

    I'm missing something here.

    Janet called me back just as I was going into the brace place. She said S is not a candidate. W might be but they need three types of x-rays and I only have one. So at some point I will have to get the other two types before I send anything.
    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."

  • #2
    Hi Sharon,

    I'm sorry to hear that S is not a candidate for VBS. I'm not totally surprised - with a curve in the upper 40's she was a long shot, but you didn't lose anything by trying, right?

    As far as W, I feel that if they confirm a degree of curvature of 31 she'll have an excellent chance to qualify for VBS. I'm assuming one type of x-ray they want for W is a bending x-ray.

    As far as bracing being 99% effective there is no way that is true. Not 99%.

    I've been around scoliosis for the last eight years - not a lifetime - but in that time I have never heard or read ANYTHING claiming that bracing was 99% effective (I don't think ANY method can claim that high a success rate). I don't know the EXACT percentage for bracing - but there is just NO WAY it is 99%. I'm sure you'll get a lot of other responses here to the same effect.

    Good luck with both girls and please keep us posted!
    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
      Hey MariaF,

      Yeah I was sorry I asked him because I like to have confidence in the folks I'm working with. I have confidence in the orthopod and extreme confidence in the surgeon. But I must say, I'm flagging in the confidence department with the bracing guy. As long as he makes a good brace, I can continue to work with him.

      I didn't have to read this forum very long before realizing why many orthopods don't brace. And I don't believe the lack of efficacy of bracing can be totally ascribed to non-compliance. If it were shown that compliance was 99% effective for avoiding surgery, you would get many more kids wearing their braces 23 hours a day I suspect.

      Geez louise!

      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


      • #4
        BrAIST Clinical trial

        Have you heard of the BrAIST clinical trial? It is a nationwide Bracing in Adolescent Idiopathic Studies Trial. Originally, when I thought my son's curve was 25 degrees I was considering placing him into this study - I was so torn about what to do "Brace" or "Watchful waiting" that I liked the idea that it would be decided for me - plus we would be helping in the research of scoliosis. Unfortunatly his curve changed very quickly to 38 and the doctor and my husband & I did not feel comfortable with this approach anymore. (Nathan had the stapling surgery done in December after a few months in a boston brace).
        Both the Shriners Hospital and Boston Childrens Hospital are participating in this study, along with many other hospitals. It is funded by the National Institute of Health and Childrens Miracle Network - it is a HUGE study

        I am not posting this as a suggestion for your child - it is just an fyi about the research that is going on regarding the effectiveness of bracing.


        Here is a link:
        http://www.goosetowngraphics.com/bra...on/purpose.htm

        Even if it doesn't pertain to your situation, I think you will still find it interesting.

        -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
          Originally posted by Pooka1
          Hey MariaF,

          Yeah I was sorry I asked him because I like to have confidence in the folks I'm working with. I have confidence in the orthopod and extreme confidence in the surgeon. But I must say, I'm flagging in the confidence department with the bracing guy. As long as he makes a good brace, I can continue to work with him.

          I didn't have to read this forum very long before realizing why many orthopods don't brace. And I don't believe the lack of efficacy of bracing can be totally ascribed to non-compliance. If it were shown that compliance was 99% effective for avoiding surgery, you would get many more kids wearing their braces 23 hours a day I suspect.

          Geez louise!

          sharon
          Hey Pooka,

          I responded to you (and Jill) on the other thread, but I agree with you that bracing failures are due in part, but certainly NOT completely, to non-compliance. Some curves are just destined to progress and will eventually require surgery no matter how compliant the wearer is.

          Best of 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


          • #6
            There are many variables to scoliosis. Overall health of the patient (any issue with muscle weakness, loose ligaments, etc) plays a part in how the scoliosis may or may not progress. An external brace is not actually supporting the spine itself. It is supporting the soft tissues/muscles around the spine. A brace will be only as effective as the responding tissues around the spine. That's why most statistics I hear quoted from ped. orthos say bracing is 50% effective. There is no scientific way of knowing if the spine is going to respond to bracing, or is going to spontaneously get better (or remain stable) on its own. If the patient gets better with bracing, that's great. That may mean the body needed a boost of support to help the spine become stable. If the patient doesn't respond to bracing, most parents and patients feel they tried.

            And, does anyone know if there are statistics about people who wore braces as teens, then required scoliosis surgery later in life? I'm sure there aren't ways to document the percentages of brace wearers who didn't need surgery immediately, but went on to have surgery later. Again, scientific studies would be impossible.
            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


            • #7
              Originally posted by Carmell
              If the patient doesn't respond to bracing, most parents and patients feel they tried.
              Hi Carmell -
              This is why I SO appreciate when you post - you see right to the point of the whole issue at heart. We all so much want to do everything we can to help our children - and scoliosis (just like many other medical conditions) does not have a one size fits all solution. It is most often left to parents to decide which way to proceed, and we all desperately want to make the right choice. - This goes back to my being drawn to the idea of participating in the BrAIST study, the decision was going to be made for me. (But in the end for us, that was not the case and we decided on our own for the stapling - So now I will hope we made the right choice - but I will always know I TRIED.)

              Thanks,
              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


              • #8
                Cara,

                When my daughter was diagnosed, her curve was 36*. Yikes! That was very close to needing surgery in my opinion. However, her doctor prescribed a Milwaukee brace and we agreed to try it. I think hearing the words "I want her in a Milwaukee brace" was harder than hearing her original diagnosis. Through all of my research (we had two months before she was seen by an ortho) the Milwaukee brace would have been the worst thing they could have said to my daughter. We were horrified. Bless her heart, Jamie tried wearing the Milwaukee but just couldn't do it. She was then switched to a Boston with modification to address her Kyphosis. She couldn't wear that either.

                Even with trying to brace her, the Scoliosis curve went from 36* to 46* in a year's time. Her curve was going to progress regardless of what we did and she was headed for surgery.

                At the time, I felt like Carmell said, at least we tried something before agreeing to surgery. If my other daughter were diagnosed with Scoli, would I put her in a hard brace? No. Would I check into the Spinecor or stapling, yes. And if either of those failed and she needed surgery anyway, I would still feel comfortable knowing I tried something.

                Mary Lou
                Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

                Comment


                • #9
                  Originally posted by nate03
                  Have you heard of the BrAIST clinical trial? It is a nationwide Bracing in Adolescent Idiopathic Studies Trial. (snip)
                  Cara,

                  Thanks for posting that. Very interesting.

                  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


                  • #10
                    Originally posted by Carmell
                    (snip)If the patient doesn't respond to bracing, most parents and patients feel they tried. (snip)
                    Now I can appreciate your opinion on this and also Cara's opinion. But I think I am in most agreement with Mary Lou.

                    This is the only life we have. We get one go around and quality matters greatly.

                    Bracing is not a walk in the park. W has the night time brace and so will be asleep for the vast majority of time she has to wear it. Even though she is given a 20% chance of holding the curve with the brace, she wants to try it.

                    As I've mentioned, at 20%, were it me, I would NOT try it when I know there is a successful surgical procedure to correct the condition at least in the short-mid term. Nobody knows the long term for anyone, not just scoli kids.

                    I would not make W get the brace given those odds if she didn't want it. And I would not feel like I didn't try. Long odds are long odds. If they are long enough, and the child in question has an identical twin who advanced x degrees in y amount of months, bracing just looks like needless discomfort. For two years. That is a significant fraction of her life at this point.

                    Just my thoughts.

                    sharon
                    Last edited by Pooka1; 03-01-2008, 08:49 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


                    • #11
                      Hi-
                      Yes, Sharon I also agree very much with your sentiments - even if a patient/parent decides not try bracing, by doing the research and making an educated thoughtful decision we can all at least know that we tried our best!


                      "I would NOT try it when I know there is a successful surgical procedure to correct the condition at least in the short-mid term."

                      If you don't mind my asking, were you referring to the stapling? If so, just fyi, my son was also very opposed to the idea of surgery at first, but after living in his brace for awhile he became much more interested in it. He was in a Boston Brace. What is W's curve?

                      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


                      • #12
                        Originally posted by nate03
                        If so, just fyi, my son was also very opposed to the idea of surgery at first, but after living in his brace for awhile he became much more interested in it.
                        Hi Cara,

                        It's interesting - I find the same thing - the kids who have been braced for a while generally are ready for ANYTHING to get them out of it. Whereas, a newly diagnosed child who is given the choice "bracing vs. VBS" might understandably be more likely to want to try bracing first.

                        My son wore a brace for almost four years. In the beginning, it wasn't great but it wasn't so bad. Then I realized he couldn't eat big meals - or wear regular clothes like blue jeans - then we started dreading summers because it was SO uncomfortable for him. Then I started thinking about other things like muscle atrophy and how whenever he'd get a cold it was more likely to settle in his chest (according to my pediatrician) because his lungs couldn't fully expand in the brace.

                        So while it's not scientific, that theory - about kids being more open to other options after being braced for a while -makes a lot of sense to me
                        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


                        • #13
                          Originally posted by nate03
                          Hi-
                          Yes, Sharon I also agree very much with your sentiments - even if a patient/parent decides not try bracing, by doing the research and making an educated thoughtful decision we can all at least know that we tried our best!


                          "I would NOT try it when I know there is a successful surgical procedure to correct the condition at least in the short-mid term."

                          If you don't mind my asking, were you referring to the stapling? If so, just fyi, my son was also very opposed to the idea of surgery at first, but after living in his brace for awhile he became much more interested in it. He was in a Boston Brace. What is W's curve?

                          Take care,
                          Cara
                          I was referring to posterior spinal fusion which is consistently referred to as the "gold standard" treatment for AIS.

                          For example, I pulled up about 6-7 articles this morning to read. Many of them used the exact phrase "gold standard" to refer to posterior spinal fusion. Either these guys are all in cahoots or this surgery actually is presently the gold standard.

                          But that said, I think my comment could apply to VBS also.

                          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


                          • #14
                            Thanks Sharon - I was just curious!
                            On another note - my husband is friendly with the owner of Spinal Technology, Inc. which is located right up the street from us. I am not sure if they are the only producers of the Providence Brace, but I got the impression that they developed it..........
                            Here is the website - there is an article entitled Good Night and other info you may be interested in if you havent seen it.
                            http://www.spinaltech.com/news.html


                            My husband was very interested in the Prov Brace for our son b/c of the night-time only wear, and had we not gone with the stapling I think we may have considered that option (Our ortho put him in a boston brace pretty quickly, and then we started researching........ Everything for us happened "really fast", and we didnt realize all of our options until after he was already in his boston brace.)
                            I wish you the best of luck for both of your daughters!!
                            -Cara
                            Last edited by nate03; 03-01-2008, 06:42 PM. Reason: add link
                            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


                            • #15
                              Originally posted by nate03
                              Thanks Sharon - I was just curious!
                              On another note - my husband is friendly with the owner of Spinal Technology, Inc. which is located right up the street from us. I am not sure if they are the only producers of the Providence Brace, but I got the impression that they developed it..........
                              Here is the website - there is an article entitled Good Night and other info you may be interested in if you havent seen it.
                              http://www.spinaltech.com/news.html(snip)
                              Cara,

                              Thanks for posting that.

                              Apparently, and to my surprise,there are at least two night time bending braces. I believe the brace that W was fitted for is the Charleston bending brace....

                              http://www.cbb.org/

                              But I could be mistaken!

                              I'll ask some routine pointed questions about which night time bending brace W will have and why.

                              Thanks again.

                              By the way, I think I would have made the identical decision you made for your son for the identical reasons.

                              S progressed so fast that I have to wonder if any brace could have held that curve. I really think fusion is not only her only hope but her best hope.

                              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

                              Working...
                              X