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Thread: How tight should a night time brace be?

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  1. #1
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    How tight should a night time brace be?

    Hi,
    I'm new to the forums and hope I am writing this in the proper place.

    Our 11 year old daughter was diagnosed with scoliosis last Sept. during a school sports check up.
    She has the S curve 38* top and 32* bottom.
    We have seen two highly regarded specialists. Both with the same idea that she should be braced but one said 23 hrs a day brace and one said night time only brace. Since the night time brace doc was first we had the brace made before seeing the other doc.
    So we are trying the night time brace along with torso rotation exercises and other exercises as well.

    My real question here is just how tight should this brace be on her.

    We got the brace a couple weeks ago and of course started out not to tight, and getting tighter each nite until we got to the marks the tech put on the straps.
    Everything was going well, our daughter slept well in it.

    Then we went in for the two week check up and the tech actually cut some of the material off the brace where the two halves meet in the front and put new marks where we should cinch the straps to.

    If I try to cinch it that tight my daughter can't breath well and I feel like I am going to crush her rib cage. I literally have to pull VERY hard to get to the
    new marks.

    If anyone out there has experience with this type of brace could you please tell me how tight yours had to be please?

    thanks for any information/advice you can give.

  2. #2
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    My one daughter wore a night-time brace for a year. I was at the orthotist with her to take the measurements and get the brace adjusted once but was not at the surgeon appt. to make sure it fit. So I don't know what was said by the surgeon. There was no cutting away of material at any point. My daughter was told to work up to the marks and she did. I didn't monitor this and I rarely helped her with the brace. She either didn't need help or her twin sister helped. I know her sister helped during the first few weeks.

    My daughter was motivated to try the brace so she "owned" the process. I let her. After a while, she relied on the brace to the point that when she took it off ahead of appointments, she had trouble sleeping because she was so used to it.

    Despite wearing the brace as directed, her curve advanced. Her identical twin was surgical so that probably lowered her odds of being successful.

    Good luck.
    Last edited by Pooka1; 12-04-2013 at 06:21 AM.
    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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    Quote Originally Posted by FAHSAI View Post
    My real question here is just how tight should this brace be on her.
    By the way, this answer is technically unknown since it hasn't been rigorously studied. If tightness correlates with amount of in-brace correction, that doesn't help much because some studies find a correlation between amount of in-brace correction and success and others don't (e.g., Katz et al., 2010).
    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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    Hi,

    I am sorry to hear about your daughter's scoliosis. My daughter was braced at age 6 and 7 with both a Providence night brace and also a Boston brace, so we are very familiar with both. I also wore a Boston brace in jr high and sadly braces really haven't changed at all since then (and that was 1980!).

    I am wondering if your daughter has had an in-brace x-ray (laying down probably since it's a night brace) yet to check for the amount of correction achieved in brace? If not, this is something I would ask about, to make sure the brace is having the desired effect on the spine. Research varies on these as Sharon pointed out, and standards are different for desired in-brace correction between night braces and full-time braces. This is something to ask the orthopedic surgeon about. Orthotists have a strong desire to make a successful brace, but sometimes they forget it is a child who has to wear it.

    As far as tightness, yes, this is such a difficult issue. It seems like the orthotists always put marks that were impossibly tight on every brace we had. The idea is you work up to the requested tightness. As the child wears the brace the trunk muscles start to atrophy and shrink, which is why you start out with the brace looser and can eventually tighten it more and more. It sounds like this has already happened some, which is why they had to trim the brace down some more. If it is so tight she complains that much, you can try putting it on a little more loosely and then try to tighten it fully after she goes to sleep. This may or may not be possible of course. Also, if it so unreasonably tight that she cannot bear it, which it sounds like, you can call the orthotist and tell them this. My experience has been they mostly say too bad, but if any areas are uncomfortable they can try to adjust that specific area.

    To me it is not worth having the brace so tight that the child is miserable. After a while with the braces at our house, we found a tolerable amount of tightness. The orthotist always tsp-tsked us when we came in and cranked it down about another inch to the point of rib-crushing, but remember, you are your child's parent and only you know how much she can tolerate.

    One side note about the night brace in particular: these braces are designed to hyper-correct during the night, and to do so they have to put an incredible amount of pressure on the child's ribs. Most 11 y/o's don't have a lot of padding in this area. Some children, my daughter included, get a hard, painful lump over the ribs that is apparently a "bone callous" from the excessive pressure of the brace. It is not permanent but if your daughter complains of pain under the brace she needs to go back to the orthotist for some brace adjustments. Don't hesitate to return to the orthotist as often as necessary to get the brace adjusted to the least amount of discomfort.

    Is your daughter wearing a good type of brace shirt underneath the brace? These can help with comfort and protect the skin.

    Best of luck, and please feel free to ask us any questions you may have.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
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    Thanks for the replys

    Thank to all for the replys your information is very helpful and reassuring too.

    We will try to work up to the marks on the brace, but I just feel so mean putting her through so much torture.

    We have not had an Xray with her in the brace yet but are scheduled to do so this week, then we will see what the orthotist and doctor say.

    We are hoping for the best but have heard so many stories about braces not working that it scares us.
    She is also working out in a torso rotation machine at a GYM here in town and I have high hopes for that as I have read so many good things about it.

    This disease just isn't fair, no one knows why it happens and there are so many guesses why it happens but no real cure insight.......very frustrating.

    I am glad I found this forum, it is somewhat comforting to know we are not the only ones dealing with this.

    thanks again

  6. #6
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    Quote Originally Posted by FAHSAI View Post
    She is also working out in a torso rotation machine at a GYM here in town and I have high hopes for that as I have read so many good things about it.
    Torso rotation is barely studied. There are only 35 study patients in the entire world. Two of the very few published papers contain identical data in the same 12 patients. Vert Mooney, instead of following out with the original patients over time, just double published the initial results of the 12 patients and added 8 more. There is probably a reason he did not follow them out longer. And he has quite a long pub list so he didn't double publish results to pad his resume. There is some other reason he did it (without mentioning he did it which is dishonest). Mooney was also less than forthcoming about his work with other researchers and may have had some financial interests in re gym equipment.

    That said, one of the better papers on PT for scoliosis is a torso rotation study by Scott McIntire. This paper has been singled out among many as being unbiased. But it only considered 15 patients. Not all patients were successful.

    Torso rotation is virtually unstudied at this point... 35 patients is not sufficient to say anything one way or another.

    We have two recent testimonials of JIS in boys. One has been doing torso rotation and one has not. The one doing torso rotation is holding steady. The one doing nothing has seen a decrease in his curve. What is to be learned with that? Nothing. Such is the difficulty of making claims based on insignificant numbers of patients.
    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."

  7. #7
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    Quote Originally Posted by FAHSAI View Post
    Thank to all for the replys your information is very helpful and reassuring too.

    We will try to work up to the marks on the brace, but I just feel so mean putting her through so much torture.

    We have not had an Xray with her in the brace yet but are scheduled to do so this week, then we will see what the orthotist and doctor say.

    We are hoping for the best but have heard so many stories about braces not working that it scares us.
    <snip>
    I am glad I found this forum, it is somewhat comforting to know we are not the only ones dealing with this.

    thanks again
    Hi Fahsai,

    I agree this is a very difficult and unfair situation for the kids and families in it. My daughter who I mention above, now almost 12, would have never made it the required number of years with bracing. The amount of arguing and strife it brought to our family was horrible, and the brace would have negatively impacted my relationship with her. And she was only 6 when she first needed a brace, so we had many unhappy years ahead of us. We also learned that she had a 99-100% chance of needing fusion surgery anyway, due to the early age at which her curve presented. We eventually chose to have a fusionless surgery done (vertebral body stapling) which preserves motion of the spine and acts as an internal brace of sorts. We asked Leah at age 7 if she wanted surgery or to continue with bracing, and she chose surgery without reservation. She is now doing very well with her curve holding steady at 15 degrees.

    I know your original question was about the brace, but I just mention our story so you are aware that there are other options out there besides bracing. Aside from stapling there is tethering, which is being used successfully for curves that are too large to staple. Tethering especially is still relatively new and neither type of surgery is done by many orthopedic surgeons. Shriners Hospital for Children in Philadelphia pioneered VBS, and probably does stapling and tethering more than any other center. Shriners Hospital in St Louis is where my daughter had her surgery, and we traveled from Oregon for it. Dr Newton in San Diego, a highly regarded scoliosis specialist, does tethering. When I first heard about stapling (from a mother on this forum) I thought, oh, we could never travel across country for surgery on my daughter, but in the end we did and we have never regretted it. The thing that shocked me was when we saw a pediatric spine surgeon he never mentioned VBS. He told us brace now, fuse later. That's pretty bleak. When I asked he just told us stapling was very new and he didn't do it. I couldn't believe that the options were completely unchanged from when I had scoliosis in 1980! Turns out there are other, newer options for some kids.

    My son is almost 9, and he has what appears to be spontaneously resolving scoliosis. It never surpassed 20 degrees, so his is completely different than his sister's case. The difficulty for so many of us parents is the inability to know what treatment will work and what the future will bring. We all wish for a crystal ball.

    Good luck, I'd be curious to hear how your upcoming x-rays and appointments turn out.
    Last edited by leahdragonfly; 12-05-2013 at 07:50 AM.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  8. #8
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    Quote Originally Posted by leahdragonfly View Post
    My son is almost 9, and he has what appears to be spontaneously resolving scoliosis. It never surpassed 20 degrees, so his is completely different than his sister's case. The difficulty for so many of us parents is the inability to know what treatment will work and what the future will bring. We all wish for a crystal ball.
    Fahsai,

    Please consider that had Gayle's son been doing torso rotation, some here would have automatically assumed that it was the PT that resulted in the reduction. And that conclusion would have been completely wrong. Equally, just because a child's curve held while doing PT doesn't mean the PT was doing anything.

    This is a very good illustration of the danger of concluding thing on insufficient evidence. There is insufficient evidence any conservative method (PT or bracing) has let a single child avoid surgery for life.

    VBS and tethering, while still experimental, are much more robust than either bracing or PT and it will be easier to get an answer one way or another as to their efficacy. For example, for fusion surgery, papers are published that crunch over 100,000 cases. Other papers show tens of thousands of cases. You will never see that with PT or bracing. That's the problem.
    Last edited by Pooka1; 12-05-2013 at 09:20 AM.
    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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