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Thread: Cheneau Light brace

  1. #31
    Join Date
    Oct 2008
    Posts
    299

    Thanks

    Thanks, Ballet Mom. We have a lot of faith in Luke, and now we have the results too, which I'm still trying to wrap my head around. I didn't know he was doing anything with the BRAIST study. I was talking to him today about how he and/or the Children's Hospital here need to do some kind of study or presentation of data regarding this brace and juveniles because I think there is a population subset for whom it is a very promising alternative.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  2. #32
    Join Date
    Mar 2009
    Posts
    1,090
    I just went back to the POSNA presentation to make sure what I was saying about Luke was correct, and Lori Dolan just mentions that a Fran and a Luke are on the committee that reviews x-rays to make sure they approve the bracing effort on each child. I just assumed when I heard Luke that Luke S. was the one being mentioned, however, I realize that there could be many other orthotists/doctors named Luke who could be doing it....so I could be very wrong on that.

    It would be good for them to do a study on his brace because one of the top-rated orthopedic surgeons we went to (who apparently has decided he doesn't believe in bracing), had never heard of the Cheneau brace when I asked if my daughter could get one of them prescribed and he told me he attends all the meetings. I don't think these European braces are known very well here in the states and they certainly look like they have a lot of promise!

  3. #33
    Join Date
    Nov 2005
    Location
    SPAIN
    Posts
    64

    Weaning

    First of all, congratulations mamandcrm. Those are amazing results.
    I have been reading this forum for years, and today I need to post that since this morning, and 5 years (!!!) before diagnosis, my daughter, who is 18 now, has officially finished with her Cheneau. She started with a 38 curve and at her last x-rays her curve was 25, and Risser 5.
    Our Doctor has recommended her to sleep with the brace on for several years, because latest studies have shown that it can help to maintain the curve, but al least, she is brace-free!!
    2004: Daughter diagnosed at 13 L38. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25

  4. #34
    Join Date
    Oct 2008
    Posts
    299

    Congratulations!

    That's great Ailea--congratulations to your daughter on her successful outcome!
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  5. #35
    Join Date
    Dec 2008
    Posts
    494
    congratulations to both of you: Ailea and Mamandcrm.

  6. #36
    Join Date
    Dec 2007
    Location
    San Diego, CA
    Posts
    36
    Thank you, Ailea and Mamandcrm, for sharing your great news! And congratulations to your daughters too!

  7. #37
    Join Date
    Aug 2007
    Posts
    388
    Mamandcrm and Ailea, Wonderful news!!! What were the historical measurements of your daughters' rotations? Has that improved as well? How many hours a day does she wear the brace (or did she in the case of Ailea's daughter)...does she (did she) have enough out of brace time for whatever physical activities?

    I've seen pictures of RC braces, but i've never seen pictures of kids wearing the RC brace with their clothes on top...are there any of them on the internet somewhere I wonder? Curious how much it shows, etc.

    Jill
    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

  8. #38
    Join Date
    Oct 2008
    Posts
    299
    Hi Jill,

    Thanks!

    Gillian has worn her brace full-time (23/7) for almost all her sports (riding, lacrosse, PE) without much problem. She pretty much only takes it off for swimming, tennis and horseshows. She will continue to wear it full-time for 6 more months then if all still looks good on the xray, switch to part-time wear. We want to have her back in night-time only either at that point or by the x-ray following. If it won't hold her curve, so be it, we will let her progress to the point where she can have VBS (her curve is too small now).

    Gillian's brace (which she just had replaced) was pretty stream-lined and not very noticeable under her clothes, provided she wore a shirt long enough to reach the top of her legs. She pretty much wears a wardrobe of leggings and a-line or empire tops. Her new one is bulkier because her orthotist made it bigger to give her some room to grow. She's not thrilled with that so we are going to have it trimmed down a bit but hopefully she only has 6 months left of day-wear anyway.

    Re rotation, we never asked what it was though she did/does have rotation. The brace addresses it and it is noticeably less.
    Last edited by mamandcrm; 10-01-2009 at 10:35 AM.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  9. #39
    Join Date
    Mar 2009
    Posts
    1,090
    Wonderful news for you too AILEA!!

  10. #40
    Join Date
    Oct 2009
    Location
    Northern California
    Posts
    1

    Hi, everyone.

    Well, my account appears to finally be working. Hurray!

    A little history:

    • When younger daughter was almost 13, we were told by her pediatrician "only about 8" (by visual observation) and "if it's just that, we do nothing but observe".
    • NO initial X-ray.
    • Inquiry about bracing brushed off as well.
    • NOT told to return every 3-4 months for more "observation".
    • Told "She will soon hit puberty, and won't grow much more then."
    • Recently finally saw an X-ray taken *a year before that visit* (for another issue); her scoliosis measured at over 10 already then, the pediatrician apparently never noticed.
    • 15-year-old daughter, who grew 2 inches since puberty (most of it very recently), now measures 37T, 41L.
    • Pediatrician is so fired , daughter is awaiting her Cheneau/RSC brace.
    • Also pursuing Schroth physical therapy, which I had never heard of until I recently spoke to a friend. Turns out my friend had scoliosis which was quite reduced by Schroth when she was a 14-year-old living in Germany. (Both our ex-pediatrician and an orthopedic surgeon were insistent that "no alternative therapy can reduce scoliosis". I wonder how they'd explain my 30-some-year-old friend...)
    Last edited by Swallow'sFlight; 10-31-2009 at 04:55 AM.

  11. #41
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,203
    Quote Originally Posted by Swallow'sFlight View Post
    (Both our ex-pediatrician and an orthopedic surgeon were insistent that "no alternative therapy can reduce scoliosis". I wonder how they'd explain my 30-some-year-old friend...)[/LIST]
    The same way they would explain the people who claim they were abducted by aliens.

    Some people are honestly mistaken. And some lie. This is not news.

    Now if your friend has radiographs to PROVE her curve was permanently reduced then we are still left with the fact that some curves do reduce and even resolve on their own. So you still can't say it was the PT.

    The doctors and surgeons understand these points. Lay people, not so much.
    Last edited by Pooka1; 11-01-2009 at 02:59 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."

  12. #42
    Join Date
    Jun 2008
    Posts
    107
    Swallow's Flight-

    You are welcome to contact me regarding our favorable experience with Schroth and the Cheneau brace.

    bas2101

  13. #43
    Join Date
    Dec 2009
    Posts
    2
    Quote Originally Posted by StephanieSmiles View Post
    I just had a question about this. I get in-brace x-rays every 6 months, and my orthotist said I wouldn't need an out-of-brace x-ray until I'm nearing the end of my bracing. He said there was no point in getting an x-ray out of my brace while I'm still wearing it. If that makes sense.

    I'm a little confused. Should my mother and I urge him to take at least a minimal amount of out of brace x-rays to make sure everything is going alright? Then again, I agree with my orothotist in the way that there isn't really a point, because it would take a while for the curves to relax to what they would be when you're out of the brace full time, and that's just time lost. Any help?
    I'm all for limiting the number of x rays you are subjected to. My daughter has already had two x rays within a three month period, one was at the time of the original diagnosis and the other to be sure the brace was fitted properly 3 months later (which I'm learning probably should have been done sooner). I have requested a prescription from her orthopedist to obtain an MRI when her six month out of brace follow-up approaches. Assuming the MRI is effective, which looks promising to me when viewed at their web site, I will proceed this way with all of her out-of-brace follow-ups. See numbers 3 and 4 at http://www.scoliosis.org/forum/private.php. I must admit, your orthotist's rational makes sense to me, although I would want to do some follow-up on in-brace to be sure the brace was still fitting properly if there was growing involved. Maybe the rational for getting out-of-brace px rays is that patients who are slipping in their dedication to wearing the brace get a wake-up call if the numbers increase. Have to admit, once you've decided that wearing a brace is the route you're going to take, makes sense to me to stay in it as much as possible .......

  14. #44
    Join Date
    Oct 2008
    Posts
    299
    Hi krbreezin,

    what is the site for the MRI that you are looking at? I'm curious--I've talked with our orthopedist about the various new technologies out there for imaging with less radiation but have not heard of this modified MRI. I would like to run it by her. Thanks,
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  15. #45
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163

    MRI every 6 months--insurance?

    Hi krbreezin,

    That is very interesting about the new MRI you linked to in your other post. But I do have to ask, will your insurance co. pay for your dd to have an MRI every 6 months?? When my dd had her full-spine MRI at age 6 (to rule out secondary causes of juvenile scoliosis) my insurance co was billed over $2100, and I had to pay something like 300. Somehow I doubt most insurance cos. will agree to pay for this so frequently, although it sounds like a promising way to reduce radiation exposure.

    Take care,
    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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