Announcement

Collapse
No announcement yet.

How do you know you have the right/best brace for your child?

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

  • How do you know you have the right/best brace for your child?

    I've just started doing research on scoliosis for my 14-year-old daughter, whose curve progressed from 16 to 27 degrees. We're seeing a specialist for the first time in about a week.

    I've been reading on the Web that the wrong type of brace (or one that is not fitted correctly) can be essentially worthless or even detremental. Apparently the right brace should correct the curve by at least 50%.

    Is that true?

    How can you tell if you've gotten the best brace for your child? Obviously we will go with what the doctor recommends, but what if he's wrong?

    I found a German forum similar to this one where they talk about Schroth PT and the brace fitters in Germany. It's scary to read that some of the brace fitters are considered bad. How would I know if I have a good brace fitter?

    (Here is a link to the German Forum -- there is only one section in English:
    http://www.skoliose-info-forum.de/viewforum.php?f=19 )

    I live in Northern California and the two places that the doctor's office said that they use are Hanger and The Center for Independent Rehab.

    Hanger has offices all over the area. Close to me, there is one in Mountain View, one in San Mateo, and one in Fremont.

    The Center for Ind Rehab is in San Jose.

    Does anybody have opinions about these places or others they might recommend?

    I've been reading that some Americans go to Germany to have a brace made. Or they go to Spain to see Dr. Rigo. That seems very extreme to me. Surely the brace fitters in the US can't be THAT incompetent? Or are the people on the German forum just prejudiced in favor of German brace makers?
    Last edited by NikkisMom; 04-24-2008, 01:26 PM.
    14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

  • #2
    Nikkismom,

    I'm sure there are others here with more experience in the matter, but I don't think US brace makers are that bad...DEPENDING on the type of brace. I'm guessing that what you are reading is related to the Cheneau brace (I'm pretty sure I spelled it wrong but to lazy to double check). In that case its more an issue of familiarity. The Cheneau appears not to be widely used in the US yet so many orthotists haven't had experience with it (or have had limited experience). I know there is a practice fitting the Cheneau brace out of Virginia (although I don't know anything of them personally). I don't recall reading about California. 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


    • #3
      Yes, I suppose most of what I'd read related to the Rigo-Cheneau brace. On the German forum they were debating where to get one made, talking about one orthotist versus the other. Naive me -- I assumed that given the correct specifications, an experienced orthotist could correctly make whatever the doctor prescribed. Is that not the case? How different can the Rigo-Cheneau brace be from other types of braces? Or is a totally different technique involved?
      14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

      Comment


      • #4
        I found from my research that many braces only take into account the "S" curve but the Cheneau brace takes into account the 3-dimensional correction needs. Our orthopedic gave us an Rx for a "TLSO" brace, but we had a Cheneau brace made in LA and it was still covered by our insurance, because I think it's still a "kind" of TLSO brace.

        Grant Wood is an Orthotist who makes the Rigo-Cheneau brace and he practices near Palo Alto (650) 888-5573. He has been trained in Spain by Dr. Rigo. gwood@hanger.com
        I have heard many good things about Grant Wood.
        Gez Bowman is the orthotist we used because he is in Los Angeles and closer to where we live. Gez's website is www.thelabrace.com
        I think these are the only two orthotists in California who make a Cheneau brace.

        I'm sure these guys can explain to you in more detail about the different kinds of braces.

        Comment


        • #5
          Originally posted by NikkisMom
          I've been reading that some Americans go to Germany to have a brace made. Or they go to Spain to see Dr. Rigo. That seems very extreme to me. Surely the brace fitters in the US can't be THAT incompetent? Or are the people on the German forum just prejudiced in favor of German brace makers?
          Hi NikkisMom,

          It's funny that you mentioned this. I was JUST reading about that same topic in Backtalk (the newsletter put out by the Scoliosis Association). Someone asked about travelling to Spain for a brace and this is what Dr. John Lubicky of Riley Children's Hospital wrote:

          "I don't think the TYPE of brace is all that important. There is no need to go to Barcelona for a brace! There's a lot of hype about all sorts of bizarre brace types. It is really the natural history of a particular curve and compliance with bracing that are the key factors for success or failure, not the design of the brace."

          While I agree that an "ill-fitting" brace is worthless, there are TONS of wonderful orthotists who work side by side with excellent orthopedic surgeons in this country. I do not think you need to travel to another country for a well made brace. I agree that would be extreme and unnecessary. Just make sure you have a good ortho here. I'm on the east coast but I'm sure you could get some recommendations from others in your area if need be.

          Best of luck to you!!
          Last edited by mariaf; 04-20-2008, 08:52 PM.
          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
            Re:

            Hi Nikkis Mom,

            My son is 13 years old. He has wear Boston brace, SpineCor, and Cheneau brace. Unfortunately, his curve continue to progress. As MARIAF mentioned Dr. John Lubicky wrote: “It is really the natural history of a particular curve and compliance with bracing that are the key factors for success or failure, not the design of the brace." Try to get some recommendations to get a good brace. I am sure you will get some good orthotists in this country.

            Best wishes to you!

            Pat

            Comment


            • #7
              It's a damn good question.

              My one kid is in a night-time bending brace. Supposedly the in-brace correction is correlated with the ability to hold the curve. I'm not convinced there are data to support that but she wants to try it to avoid surgery. It's not too onerous for Willow to wear it at night.

              Upon first exam, Willow was told that there was an 80% chance that she would progress to surgery based on the rapid and extreme progression seen in her identical twin, Savannah who has posterior spinal fusion on 26 march 2008. But after seeing the in-brace films, the surgeon revised her chances of the brace helping her avoid surgery to 60%.

              Now I don't know nuthin' 'bout birthin' no bracing but that seems like a very wide swing that appears to my little uneducated eye to be unconstrained by actual data.

              Now that I have helped one kid through surgery and recovery, and that kid was claiming she was glad she had it by the second week after surgery, I am not convinced that wearing even the night-time bending brace for a few years is better than waiting and seeing and still having a 30*+ curve even if it holds and wondering if that will hold the rest of her life and THEN possibly needing the fusion ALSO. I mean surgery was harrowing at times but the recovery was quick. The idea of a kid having to wear a brace for a few years and ALSO needing surgery just slays me for some reason.
              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


              • #8
                Bracing - Spinecor

                Hola Nikkismom

                I run a support group on Yahoo and the recent activity surrounding braces has been Spinecor - they are rating it as the best brace since the invention of the Harrington Rod! (not that I think the Harrington was all that great, now that I have one!)

                Rigid braces have already proven to be ineffective and a lot of surgeons do not prescribe braces nowadays. Rather, they ask patients to just have normal life until surgery is required. What's the point of letting kids go through the experience of wearing a brace for years when they are going to do surgery anyway?

                Last June Journal of Pediatric Orthopedic published spinecor study analyzed with new criteria set by SRS...all braces were analyzed this way so that direct comparison would be possible.

                The results were so promising that editors had also published opinion article regarding this study. Their recommendation was that movement of stopping scoliosis screening by some orthopedic surgeons should cease now that we have Spinecor which really works in nonsurgical stage. Thought was that up until Spinecor was developed, early detection was just unnecessary since there weren't any effective early treatment available anyway.

                Word of advice in choosing spinecor providers. Choose the doctor who's at the clinic full time. Due to shortage of providers, there are some providers going from state to state every 3 months or so as there are many states that lack a provider.

                This is hazardous as if something goes wrong, you won't see the dr for 3 months and if you want to ask a simple question, you need to hunt them down. Other advice is that if they perform vestibular testing (an ocular diagonistic device), do not go to them. It is not part of Spinecor protocol and it'll add about $2000 to your bill. It does absolutely nothing as far as treatment of scoliosis goes. There are couple of doctors who do this. Watch out.

                What you need to remember is that Spinecor is supposed to work all by itself. Nutritional advice, vestibular testing, and whatever other forms of therapies outside of Spinecor aren't part of Spinecor protocol.

                Spinecor does recommend rehab protocol and have their own developed specifically for each different classifications of scoliosis. This is also not required although recommended.

                Hope that helps
                Scoliosis Support, News, Blog
                Twisted and Curved....I like that in a person
                Harrington rod T5 to L1 (1989)

                Comment


                • #9
                  Nutty,

                  Thanks for the info, but my daughter's doctor said that he did not recommend Spinecor in her case. He said that a Providence brace at night was the right thing for her.
                  14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

                  Comment


                  • #10
                    Braces

                    Hi Nikkismom

                    No problem, thanks for the reply and I wish you and your daughter all the best with her Scoliosis
                    Scoliosis Support, News, Blog
                    Twisted and Curved....I like that in a person
                    Harrington rod T5 to L1 (1989)

                    Comment

                    Working...
                    X