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Thread: When I started questioning bracing

  1. #1
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    When I started questioning bracing

    Okay I searched my threads that I started and indeed I started questioning bracing almost from when my daughter went into the brace and well before we knew she needed fusion. I have to point out though that this may not be a case of brace failure as she decided to stop wearing the brace several months after starting.

    Here are some threads I started that questioned bracing:

    http://www.scoliosis.org/forum/showt...all&highlight=

    http://www.scoliosis.org/forum/showt...nts&highlight=

    http://www.scoliosis.org/forum/showt...uot&highlight=


    And only later did we realize my daughter needed fusion...

    http://www.scoliosis.org/forum/showt...hoe&highlight=

    Quote Originally Posted by rohrer01 View Post
    My apologies. It was an honest mistake to infer that your daughter's bracing failure got you looking at the bracing statistics. To Flerc, this mean "attack" in every line of reasoning that I've seen from him. I made an inference that the failure caused you to look more deeply into this treatment because it sure would have made me look deeper into it.

    Regardless of "why" you looked into it, you have found some astounding articles that would probably steer me away from bracing my child. My DIL had a brace failure and she was diagnosed at 12 years old with an 11o curve and needed spinal fusion at age 16! She isn't hyper mobile to any extent that I have seen. She does have very long thin fingers, though.
    No need to apologize!

    Concerned Dad credited my posting those papers with taking his daughter out of brace. And indeed her curve held until WELL past skeletal maturity and then moved. She was spared brace treatment and made it to skeletal maturity at a"safe" curve level. That would have been considered a brace failure if she had been wearing the brace but in fact it was not a brace failure since she wan't wearing one! This is how dicey the situation is and how the literature can't be other than a train wreck in my opinion.

    Actually as I recall, I started reading the bracing literature when my daughter was first put in one because I wanted to know the fact case. I think I realized it was a train wreck WHILE she was wearing it and BEFORE I knew the outcome of her case. The history of my thinking on this is probably memorialized in the forum so whatever that shows is what went down w.r.t. timing of my thinking about bracing. Maybe I started looking at the bracing literature only after her brace failure as you suggest but I don't think so. That may be went I became more vocal about it but until I found the paper on the refractory nature of Marfans (and perhaps other connective tissue disorders) to brace treatment, I would not have realized that my daughter was not typical and was probably doomed to fail brace treatment.

    I have mentioned at least a few times that I think the case for bracing would be somewhat better if they excluded the connective tissue disorder patients. This area of research is rocket surgery when it is hard to exclude certain conditions from brace studies 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."

  2. #2
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    Quote Originally Posted by Pooka1 View Post
    Okay I searched my threads that I started and indeed I started questioning bracing almost from when my daughter went into the brace and well before we knew she needed fusion. I have to point out though that this may not be a case of brace failure as she decided to stop wearing the brace several months after starting.

    Here are some threads I started that questioned bracing:

    http://www.scoliosis.org/forum/showt...all&highlight=

    http://www.scoliosis.org/forum/showt...nts&highlight=

    http://www.scoliosis.org/forum/showt...uot&highlight=


    And only later did we realize my daughter needed fusion...

    http://www.scoliosis.org/forum/showt...hoe&highlight=
    Wow, how do you find all these older posts so fast? I don't think I would give it the effort. I just got around to putting some cool new radiographs on my computer. I'm going to see if I can upload them to my CD thread. I still don't know how to really use that program. It keep every blooper upload and they are all unnamed so I have to look at each one and try to figure out what it is. I wish it would let me name and delete them. Some aren't cropped, if you know what I mean! I have a creepy MRI that I'm going to try to post just for the heck of it. LOL
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
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    I'll look forward to seeing your uploads, Rohrer.

    In re my threads, I just searched the list of threads I started. I may have commented even earlier than my threads on other people's threads. But this corroborates my memory that I started noticing the train wreck very early. It was hard to miss. I think it was also around this time that the SRS came out and admitted it was a train wreck. It's still largely a train wreck in my opinion.

    What blew my mind is there were some people on the group who disagreed with me pointing out that I thought it was a train wreck and me pointing out that the SRS agreed it was a train wreck. They didn't think kids and other parents should be discouraged. That "thinking" is in a class by itself for irrationality and when I started considering normal parents were being driven around the bend by this diagnosis. This is when I also realized there were parents on the group who probably would brace their child if there was only a 1 in 1,000 or 1 in 100,000 chance of it avoiding surgery. Again not rational given the difficulty of brace treatment and the uncertain future with or without fusion.

    Then there is the issue of about 50% of braced patients would not have progressed anyway in the brace-wearing period. So the success rate is known to be too high by a lot.

    The bracing window is ABOVE the level that is considered to be protective against future progression to surgery territory. Because braces don't correct curves, practically every brace patient is NOT protected against progression to fusion territory even if they hold in brace. And then there in the whole issue of damage and pain for having a bracing-territory curve over decades.

    I think if anyone ever can get a hold on the long term of braced patients, it is possible that few of these bracing "successes" avoid surgery or at least a future filled with pain and disability even if they don't get fused.

    Taken together, I consider brace treatment completely optional. My kid wanted to try and stuck with it a year. At some point during that time I had wised up enough to know the brace was a long shot and told her she can do what she wants. When she learned she needed surgery, she was okay because it was her decision. This is why I feel so bad for the kids who are threatened and cajoled into wearing their brace and why they are appropriately angry.
    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."

  4. #4
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    And by the way, my daughter wore a night time brace. She said she would not have wore a 23/7 brace. Luckily, the data in hand made that a perfectly rational statement.
    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."

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