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Thread: Does bracing work? style and success to date

  1. #46
    Join Date
    Oct 2008
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    That's true, but the intent of the thread, which was very specific, should have been respected. It's very easy to start a new thread to discuss different subject matter. Muddling or redirecting threads makes them very hard to follow and of limited use to those who are trying to find information on particular subject matter.
    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. #47
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    I actually wasn't aware that parents shouldn't be posting in the bracing forum even about bracing.

    I understand Linda's reason... parents should be posting in the parents' area, but I never knew bracing posts by parents shouldn't be in the (kids) bracing section.

    I mean the "Surgery" section is also in the kid's section and that is mostly parents starting threads. I have never heard a comment that parents shouldn't be starting threads in that section and it's good because I have started a bazillion threads in that section including the ones tracking the surgery of my kids.

    Maybe it would help if the same section names (Bracing, Surgery, etc.) were in parents' section?
    Last edited by Pooka1; 10-23-2009 at 03:10 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."

  3. #48
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    Quote Originally Posted by concerned dad View Post
    BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
    But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.
    I engaged folks here in such a discussion. I'm sure it wasnt the first. If you look at some of my early posts, you’ll see that I shared your views on Braist being ethically questionable and I looked hard at all the bracing data I could find; sparring with Sharon all the way. She didn’t just wear me down, she helped me realize that we just don’t know the answers.
    Great point, CD. On the one hand, as you say, we don't want to give a child a reason to be non-compliant. On the other hand, many parents (as you did) want and need to have a thoughtful and thorough discussion with others on this forum to look at the issue of bracing from all aspects, and to hear the opinions and experiences of others.
    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/

  4. #49
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    Quote Originally Posted by concerned dad View Post
    BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
    But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.

    Do you see value in exploring these issues in a public forum?
    Do you (or anyone else) have suggestions for how to openly explore these issues yet not discourage a kid who happens to read it?

    Maybe the issue is rehashed too much and CD should just move on. When push comes to shove, there is little I can offer here except participation in a discussion like this.
    Issues that pertain to scientific studies that cast doubt on the effectiveness of bracing belong in the research forum only. Casting doubt on bracing does not help any child or parent that is trying to support their child's bracing. And in fact, your Danielsson study that you posted shows quite a bit of evidence that bracing is helping kids.

    ● Patients in cohorts with moderate- or smaller sized AIS curves at maturity had not deteriorated (beyond their original curve magnitude) at the 16- year follow-up if they had been braced initially. If only observed during adolescence, curves increased as much after maturity as those of braced patients, leaving the patients with a slightly larger curve size.

    ● No patients in the group of patients who were initially braced underwent surgery, while 6 in the observation group required surgery during adolescence, compared with none thereafter.

    ● Patients who were premenarchal at inclusion ran a higher risk of progression.
    If anything I would have that posted at the bracing forum with the caveat that bracing will not be effective on all patients, particularly if the brace is not used as directed.

    If they are more interested in scientific studies, I'm sure they'll find the less traveled research forum. It can be quite dull after all.

    I have always enjoyed your posts, and if you left, the problem would still be here as Pooka has made it her life's work in every one of her non-surgical posts, for whatever bizarre reason, to liberate these poor baby fluffy bunnies from their braces so they can be exposed to any number of surgical complications unnecessarily...both short term and longterm. A grown woman should know better.

  5. #50
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    Quote Originally Posted by LindaRacine View Post
    I didn't move the thread to the Research forums, but I did move it to the Parents forum. If anyone notices posts in the kids forum that are started by adults, I would appreciate having my attention drawn to it.

    Thanks.
    I don't think it's ever been clear that that the bracing forum was for kids only. Perhaps a sticky note making that clear is in order.

  6. #51
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    Quote Originally Posted by Pooka1 View Post
    Or maybe empowering.

    Though the mills of God grind slowly, yet they grind exceeding small;
    Though with patience he stands waiting, with exactness grinds he all

  7. #52
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    Quote Originally Posted by Ballet Mom View Post
    Though the mills of God grind slowly, yet they grind exceeding small;
    Though with patience he stands waiting, with exactness grinds he all
    I think you just told me to go to hell, yes?

    Sell crazy somewhere else, okey-dokey?
    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. #53
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    Sep 2006
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    Milwaukee, WI
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    Lightbulb Compliance -

    Hey! I just have a comment on compliance, now to be honest, I didn't go through and read the entire 4 pages of comments on this, but a few observations from a former brace-wearer. firstly, I was 100% compliant in my brace. I was instructed to wear my brace 23/7. And I did. for 5 years I was completely compliant. I lived for my xrays because it was a doctor condoned day off from my brace. During my treatment I met kids who were not compliant. as soon as their parents would be out, or not watching them, they would take their brace off and hide it under their bed. I never understood kids like that. I mean, my mentality was that if a brace could prevent a dangerous surgery that would limit motion for your entire life, why would you not try to prevent that by wearing a brace. and if you are gonna wear a brace, then why only do it halfway? If i was gonna wear the brace, I was gonna do it 100%. I remember meeting one girl in particular who hid her brace. I just couldn't understand someone who would jeopardize their own health by not wearing a brace. But at the same time, I understand that this mentality is not always shared by others, hence the issues of compliance. so yea, thats my two cents worth.


    and in answer to the original question, I wore a cheneau brace for 5 years. and my out of brace curves went down. and i am so glad i wore it, because my curved increased in a boston/TSLO. so yea....
    Hey, so I'm Rebecca, I'm 20 and I wore a Boston Brace for one year, and then a Cheneau brace for 5+ years. The Cheneau changed my life. I now am out of brace full time!!!! Its amazing. For all my scoli-girls (and guys of course) hang in there - the day you get your brace off is the best feeling ever. All the years of wearing it won't matter when that day comes. amo vobis!

    "DUX FEMINA FACTI (The leader of the deed was a WOMAN!)"
    -Virgel

  9. #54
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    There's a Parents forum, and there's a Kid's forum. The Kids forum was specifically created so that kids can communicate with other kids. I don't mind an occasional adult post there, but let's please leave it for it's intended purpose.

    --Linda

  10. #55
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    Sep 2009
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    Wisconsin
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    Wow, thanks for the honest replies to the original topic...

    So far I see Rigo cheneau brace is very successful.

    some had limited results with Spincor and switched back to original brace
    although Spinecor thread had most interesting posts and over 2000...unfortunately some of the posts where not about spinecor benefits.
    several here posted good results...why is that? Less out of brace...due to the right fitting and compliance, the right doctor?

    a few with Boston brace.

    My conclusion is this, if one is compliant the brace can be successful.

    I do have to wonder if the success with the Cheneau brace is more of a combination effort with PT Schroth and bracing.

    This is my conclusion:
    Bracing is successful if:
    1) proper fit
    2) refitted after growth
    3) compliance
    4)exercises or PT for scoliosis/ individualized with curves

    Cheneau has the most benefit (Haven't found anyone try it and switched)
    Spinecor Some started with it and switched and vice versa
    Boston Same as Spinecor
    A few input on night time braces as being successful

    Non of the braces work good with a diabetic pump...not really, without compromising the brace structure
    Last edited by Bigbluefrog; 10-25-2009 at 07:44 PM.
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love


  11. #56
    Join Date
    May 2006
    Posts
    20
    My daughter's pedo doc spotted her curve at age 11. It was stable at 14 degree for almost a year and then jumped to 32 over the summer risser 0. She wore a boston brace for almost 2.5 years . She was very compliant for about a year and then not so much at the end . The brace has worked for her so far. At her last appt Jan 09 her curves had settled back to about 11 and 21 . She is now 16 .The docs told us her curve would most likely settle back to its prebrace point after 1-2 years. We go back the end of this year and will see.

  12. #57
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    Oct 2008
    Posts
    299
    Hi BigBlueFrog,

    Just FYI, my daughter does not do Schroth (she's the Cheneau wearer who went from 35 degrees to 14 degrees in 9 months). She's too young, we've never looked into it. Re: diabetic pump, don't rule out the Cheneau. My daughter had lots of holes in her brace (large ones at times). It may be that a hole may be placed that will not affect the integrity of the brace. If you would like more info on who we see for the Cheneau, please PM me.

    Chris
    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

  13. #58
    Join Date
    Jan 2009
    Posts
    22

    Smile

    Hi Big Blue Frog,

    My dd has been wearing a TSLO for 5 months now. She is supposed to wear her brace 23 hrs/day, but because she dances competively, it is more like 20 hrs/day. She just had her first out of brace x-ray (24 hrs out of brace) and her top curve was 26*, down from 43* in June, but 10* higher than her in brace x-ray from July (which was to be expected). That is promising and the dr was pleased. She is fully compliant and has had a really positive attitude about bracing. Her attitude is that wearing the brace may keep her from having to have surgery if it works and delays surgery if it doesn't. I take her results at face value. I am hopeful that this means bracing is working for her, but cannot know for sure until she is completely out of the brace. For now, it is doing what we want and she has grown 2 inches since June. The positives are outweighing any negatives. If that were to change, so would our decision on how to treat her scoliosis.

    Good luck with your daughter.

    Michele
    DD/12 yo.
    diagnosed 1/9/09 at age 11-- 30*, 19 * S-curve- recommend wait/watch
    3/16/09- 32*, 23*
    5/14/09- 42*, 32* fitted for Boston Brace
    7/2/09- in brace x-ray- 16*,20*
    11/6/09- out of brace 24 hrs x-ray- 26* top curve, 18* bottom curve
    03/11/10- out of brace 24 hrs x-ray- 24* top curve, 16* bottom curve

  14. #59
    Join Date
    Oct 2008
    Posts
    299
    Wow, Michelle, those are great results. I haven't heard of such success with a Boston brace before--it's good to know that there are cases like your daughter's out there.
    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. #60
    Join Date
    Jun 2008
    Posts
    107

    Cheneau/Schroth

    My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.

    I do not wish to list the numerous treatments we sought from 7-12 years old, because I do not wish to degrade a treatment, simply because it did not halt my daughter’s progression.

    By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

    In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

    Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.

    When we saw the surgeons in Jan 2008, they said there was nothing we could do, and that her surgery could not even wait until summer because of the threat of further progression. She was pre-menarch, Risser 0, and still had a lot of growth left. Yet, these indicators were the same reasons we were still able to brace her and have some confidence that it would either stabilize or improve her curve. While her growth was her enemy, it was also her only hope.

    While, scoliosis will always be a part of my dd’s life, I believe our positive experience is a testament to Cheneau/Schroth. My daughter was pre-menarche, Risser 0, and grew over 4 inches, while taking her main curve from 68-70 to 59.5 (60 if you wish). She also improved her lung function (which is over 100%), her alignment by over 4.5 cm, and was able to carry out her growth. I only wonder what improvements she would have had if we had started this sooner (oh well!).

    Since she is currently still growing at 14 yrs, Risser 2, and barely post-menarche, she will remain braced for the next year or so, and then begin the weaning process-at which point, Schroth will be more important for her quality of life. If she chooses surgery in the future, it will be her choice. But, for now, her scoliosis is manageable, and not the emergency it was made to be 2 years ago.

    Anyone interested in more details, can PM me.

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