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Thread: Lyon brace?

  1. #1
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    Lyon brace?

    DD14 went it for an adjustment to hr TLSO brace and the orthodist was a different one from the one we've seen in the past. He made the adjustment and then told my husband he recommneded we consider a Lyon brace instead, and they'd make one for free for us. I've searched it on line and it looks like a modified Milwaukee brace, comes up quite high etc. I'm going to call our orthopedist to ask him. This is our second brace with this company and no one has ever suggested we have anything but the one we have. We even asked a specialist once about a Milwaukee brace and he said she didn't need it.

  2. #2
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    HI. I am not sure orthotists should be recommending anything. Only surgeons are trained for that as far as I know.

    Our orthotist seemed to think of the ~300 kids he made braces for that only 2 needed surgery. These guys may not be linked into any actual outcome data or understand research.
    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."

  3. #3
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    Our Dr called the orthodist and then called me back this morning. Now he thinks this Lyon brace is worth a try. Why he didn't think this (or the other orthodists suggest this?) before now I have no idea and frankly it is too late to complain about it. They are offering it for free. The only headache is the recasting: for some reason we cannot use the casting done less than 10 weeks ago.

    We finally got the TSLO to fit correctly and they want to switch. This Lyon is also a TLSO but closes in the front (not bad) and comes up over the boobs (potentially bad) but am told it is all plastic and can be hidden under clothes. Her T curve is T8 is already at 41. I can't imagine truly this will make a difference but maybe. At least it is for free.

  4. #4
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    I believe most scoliosis specialists say that braces are absolutely ineffective once a curve hits 40 degrees, so not sure why they'd want to make yet another brace. Is it truly free? Or, are they billing your insurance company? If they're billing your insurance company, than it may not cost anything out of your pocket, but there's still a cost.

    --Linda
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  5. #5
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    The problem is even if the brace stops the curve at 41*, what is the outlook for a curve like that? Simply having a large curve, even one that doesn't progress, results in uneven loading of the discs. Over time, maybe that explains why spines sometimes collapse.

    But a potentially bigger issue is the possibility that if the T curve is not corrected that the lumbar might get structuralized and collapse. Dr. Hey has posted some cases like this. It would be snatching defeat from the jaws of victory if a brace held a T 41* but then the entire spine needed to be fused due to a collapsed formerly compensatory L curve. I have no idea how often this happens but I'd be asking adult deformity specialist that. Dr. Hey often talks about "a stitch in time" in re this type of thing.

    The game might be over for curves over 30* at maturity irrespective of the bracing protocols. Who knows.
    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."

  6. #6
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    There is no cost, nothing billed to insurance. We received a new, larger TLSO in July and when going in for an adjustment this month they said we'd rather have you wear this one instead and will provide it under warranty.

    We went in Friday for a new casting. The orthodist is their scoliosis specialist and why we've never seen him before I don't know. He's also the office manager and said they are doing a study with Lyon braces and have found them much better at holding thoracic curves than the Boston style TLSO. He presented some reports on it recently at the SRS. This is the orthodist we see now:
    http://www.scheckandsiress.com/our-team.php?id=39 Apparently he called, spoke to our own doctor who then called us and said try this new brace. We said ok.

    So that's what we're getting. Whether it works or not, no one wants her curve to grow past 40-41 where she is now while she is still growing, and if we can get better correction in this brace than in the TLSO then we are going to try it.

    Looking at her she is extremely balanced. I have no idea really what you are talking about when you say spinal collapse etc. Surely none of this has been mentioned to us. All they say is she has minimal rotation and balanced. The last TLSO she only achieved 25% correction in brace of the thoracic (lumbar 100%) and they were happy with that as her curve is T8 and they tell me it is high.

    As her mom what more can I do? Even our second opinion with the surgeon was to continue the old brace she had. This Lyon is new to us. Even a search online shows the old metal style not the new plastic ones he had in the office.

    Maybe she will end up with surgery. Maybe not. But I never want to think I did not try everything I could, you know? She isn't complaining, the brace is not bothering her, she looks attractive and has lovely clothes to wear that fit. I'm trying my best. Really.

  7. #7
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    Quote Originally Posted by cello_mom View Post
    I'm trying my best. Really.
    Yes you are. Nobody doubted that. :-)

    It sounds like they are enrolling her in a study of the Lyon brace. But I am not sue why it should be publishable if they include kids who are outside the bracing window of 25* to 40* unless they are studying that specifically. But then I would want to know why the window ends at 40* if it is now apparently reasonable to brace curves>40*. There is some reason the present protocol is to not brace curves > 40*.
    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."

  8. #8
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    i'm not sure about enrolling in a study. We didn't get anything beyond the brace as part of the conversation we had. She's still growing, which is why they want her in a brace even though she is at 40 degrees. Out of the brace her back hurts, so I am thinking the reason they continue her in it is a) she is more comfortable in it than not; and b) if they can hold the curve from progressing to 50 then it is win win no? Her last x ray showed no progression in 7 months (and we'd had in brace progression for a year).

  9. #9
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    Quote Originally Posted by cello_mom View Post
    i'm not sure about enrolling in a study. We didn't get anything beyond the brace as part of the conversation we had. She's still growing, which is why they want her in a brace even though she is at 40 degrees. Out of the brace her back hurts, so I am thinking the reason they continue her in it is a) she is more comfortable in it than not; and b) if they can hold the curve from progressing to 50 then it is win win no? Her last x ray showed no progression in 7 months (and we'd had in brace progression for a year).
    Well that's a good question. But if holding the curve between 40* and 50* was viable then the bracing protocol should be to brace up to 50* and not 40*. There is some reason why the bracing protocol ends at 40* and the surgical trigger is at 50*. That is a no man's land of no treatment specified per protocol.

    I could speculate on why that is but I would rather ask a surgeon. I'm guessing it's a relatively rare curve that does not eventually become surgical at some point if it is in the 40s* at maturity if not through continued progression then through concomitant damage to the discs from having extremely asymmetrical loading over the years. PT might help alleviate the pain your daughter has out of brace. It seems like the more she wears it the more debilitated she will get from lack of muscle use and the more pain she might have. It's a bad feedback loop. PT is known to be effective for some pain.

    We had a member here whose curve hit 50* before the end of the growth spurt and never got bigger over the next several decades. She didn't wear her brace much and it still never got bugger than 50* through the rest of growth and her adult years. She still had fusion for pain though.

    My one daughter had stability and progression in and out of brace. The curve moved when it wanted to and stabilized when it wanted to irrespective of brace wear.
    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."

  10. #10
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    I thought you might like an update

    She hates this new brace and refuses to wear it. It is extremely uncomfortable and actually makes her back hurt more. When the orthodist called to check on her a week after we hit it I told them so. She has worn it about three times and went back to her old one. I cannot force her to wear it.

    I also have not gone back obvious for a month later x ray. I think I will call and see if they want to see her for an X-ray in December (6 months after the June which showed no progression).
    Here's the Lyon she won't wear. She calls it The Iron Maiden.


    image.jpg

  11. #11
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    Quote Originally Posted by cello_mom View Post
    I thought you might like an update

    She hates this new brace and refuses to wear it. It is extremely uncomfortable and actually makes her back hurt more. When the orthodist called to check on her a week after we hit it I told them so. She has worn it about three times and went back to her old one. I cannot force her to wear it.

    I also have not gone back obvious for a month later x ray. I think I will call and see if they want to see her for an X-ray in December (6 months after the June which showed no progression).
    Here's the Lyon she won't wear. She calls it The Iron Maiden.


    image.jpg
    Everyone, both your daughter and you, are doing their best. That's all anyone can do. Thanks so much for these updates. I think every testimonial going every which way is valuable.
    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."

  12. #12
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    Hi cello mom,

    My heart goes out to you and your daughter--the brace looks extremely constricting and uncomfortable. I wore a boston brace at her age and hated it (and it did not come up nearly so high), so I truly understand your situation. No one should judge you or your daughter for this. She is doing her best, too. I flat-out refused to wear my brace once I started high school. I was not quite done growing but my curve did not progress.

    It seems like her back pain will improve within a month or two out of the brace. The brace will cause her trunk muscles to atrophy, then when she is out of the brace those muscles have to work, which makes them sore. This is temporary.

    I hope that by this point your daughter is near enough the end of her growth that she can retire the brace. Time will tell if surgery is in her future.

    Best wishes,
    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

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