How tight should a night time brace be?

[FAHSAI]

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.

[Pooka1]

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.

[Pooka1]

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).

[leahdragonfly]

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.

[FAHSAI]

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

[Pooka1]

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.

[leahdragonfly]

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.

[Pooka1]

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.

[FAHSAI]

thanks

Thanks for the replys. We have been tightening the brace a little at a time and tonite it is almost as tight as they want it. so far our daughter is Ok with it.
The Orthotist says as it gets tighter the muscles in the back give way to it and it can be made tighter and tighter. IIRC the night time brace actually forces the curves the opposite way and the stronger muscles atrophy giving way to the brace....

Pooka, I kind of think no two cases of scoliosis are the same. What works for one may or may not work for another. So to me there is no real way to tell what will work. Surgery is the last thing we will try. I know for some it is the right answer, like in the case of a child refusing to wear a brace. sometimes the fight just isnt worth it, or maybe they wear the brace but it doesnt help. but in our case she seems to be Ok with it, actually kind of "owning it", and knowing that it is a chance to not have surgery. She is totally against surgery.

About Torso rotation: When we discovered the scoliosis I started paying more attention to the shape of her body. I noticed her waist on the right side was indented quite noticeably. She also had a very flat back, and couldnt even do a somersault without flopping over on her flat back, couldnt touch her toes(but is very very flexible in other ways). So not knowing anything about PT I just started exercising her in ways that I thought would reduce the twist and also put more muscle on the right side and make her back more flexible. When we began "at home exercises". I made a simple torso rotation device with a bungie cord attached to the stair railing. I only worked her with this on her weak side. Then I started doing Yoga type planks with her and side bends with light weights. Also we did exercisesd to round her back. Now looking at her I can see that her right side is not as indented, she can do regular somersaults and can do much more than touch her toes, she can put her hands flat on the floor from a standing straight leg position and she can round her back at will.

So now on to torso rotations in a real machine. We have only one in our small town at a gym so I got her a membership and we go there twice weekly.
At first her clockwise rotations were much weaker than counter clockwise, but now just after 5 or 6 sessions she is almost stronger on the original weak side than on the original stronger side. She really seems to love working out and does some ab crunches on a machine and some seated rows too.

So does the torso rotation work,,,,I dont know, but I can see physical improvements and strength improvements that at least make her core stronger which both doctors we've seen and the orthodist say will help. She will get another X-ray in a month and if there is improvement or its at least stable we still won't know if its the brace or the TR, but either way we will be happy.


I will continue to be positive about this because I believe in it and our children are very perceptive and can tell when we do or do not believe in things. They follow our lead for good or bad. I believe our brains have the power to cure any disease if we believe strongly enough.

thanks again for the replys and information and I will report back on any new developments as they happen

[Pooka1]

Pooka, I kind of think no two cases of scoliosis are the same. What works for one may or may not work for another. So to me there is no real way to tell what will work. Surgery is the last thing we will try. I know for some it is the right answer, like in the case of a child refusing to wear a brace. sometimes the fight just isnt worth it, or maybe they wear the brace but it doesnt help. but in our case she seems to be Ok with it, actually kind of "owning it", and knowing that it is a chance to not have surgery. She is totally against surgery.

I'm glad your daughter is willing to try. It really has to be her decision. There is a fine line between staying positive and the child perceiving a promise of efficacy has been made. Here is Dr. Hey dealing with the aftermath of a child, now grown, who feels she was lied to...

http://www.scoliosis.org/forum/showt...-about-bracing

You speak of surgery like it is a choice similar to choosing PT or bracing. It is not. If it was a choice nobody would pick it. People are not selecting surgery over conservative methods. They have to have surgery if they have to have surgery. Nobody has surgery who doesn't need it. Not trying a conservative method like bracing and PT is not equivalent to choosing surgery because of the over-treatment rate and lack of evidence of efficacy. Half or more of the kids who are braced are braced needlessly. And even the "successes" could be just delaying surgery for all anyone knows. In BrAIST, a 49* curve at maturity is a "success" by the way. It is thus rational to not want to try a conservative method. It is also rational to try conservative methods. But it is incorrect to say not trying these conservative methods is choosing surgery because that can never be shown in any particular case.

I have always been puzzled by this lumping of surgery as if it was a choice like PT and bracing which really are choices. Nobody would choose surgery. The only way surgery would be a choice is if PT and bracing work would be known to work. But that can't be known for any particular patient as you say.

As far as I know, the curvature is caused by anterior overgrowth of the spine. If bracing can't stop that growth then I am not clear on how (intermittent) PT can unless it has nothing to do with muscle. But nobody has ever shown the problem is a tight ligament or something that might be stretched. If it were that easy they could just surgically cut the ligament perhaps. They do that in horses and it is usually successful if you can believe it (for patella issues, not spine). But this isn't my field and certainly we have researchers like Dr. McIntire who think it is viable. His field so I defer.

So not knowing anything about PT I just started exercising her in ways that I thought would reduce the twist and also put more muscle on the right side and make her back more flexible.

It seems reasonable. And yet Schroth, arguably the most widespread PT treatment that has been around for at least 90 years, does not allow any torso rotation. Complete disagreement among the various PT modalities is an indication very little, if anything, is known about what works or doesn't work and why.

[hdugger]

Even surgery isn't that black and white. My son would have been one of those teen surgery cases if he'd been seeing Dr. Hart back then (according to Hart). He was advancing fast, he had a big curve. So, at 16 or 17, he would have been one of those teens who had to have surgery right away. And, if he'd had surgery we would have thought that it was absolutely necessary to keep his curve from continuing to advance rapidly.

But, it turns out, that his curve stopped advancing at right about the time he would have been recommended surgery. And at 18 or 19 he dropped into the adult patient pool and has since been released from follow up for five years.

We still assume that he'll need surgery somewhere down the road - he still has a biggish curve which is likely to slowly progress - but it turns out that it wasn't an emergency when he was a teenager. His curve would have stopped progressing on its own.

This is not meant to discourage teens from surgery - surgery is easier when you're young, and there are lots of good reasons to have it if your curve is rapidly progressing - before it affects more of the spine, while the spine is still really flexible, when recovery rates are good. But it's simply not true that every teen who has surgery would, necessarily, have had their curve continue to progress without the surgery. Just like bracing, we'll never know what an individual's spine would have done if they hadn't had surgery right at that moment.

[FAHSAI]

thanks for that information hdugger, I am happy for you and your son. I hope he doesn't have to endure the surgery later in his life.

I feel the same way about not knowing. I don't know if a brace and or TR will help and even if it does I wont know if either of them were the remedy or if the curve stopped by itself.
However I will continue on this path for now and see what happens. If her curve continues to increase we will consider other options but surgery will
be the last resort.

In the mean time I will be positive about this and keep my child that way too.

Negativity is just flack that we have to fly through. It scars me but wont stop me from reaching my target.

[hdugger]

I think you're on the right track in paying attention to what you can measure without an xray. My son has a very stiff curve (he also has kyphosis and some deformed vertebrae) so it's unlikely that any conservative treatment will lessen his curve. But, with a mixture of exercise and massage, his curve *looks* much better - he stands taller, seems straighter, even though the underlying curve is unchanged. He feels better about himself, which is huge for us. We're accepting of the possibility of surgery, but he's no longer on a surgical track, as an adult, because his curve is stable and not painful. Our hope is that, if he ends us needing surgery down the road, there will have been some advances by then which better address kyphosis.

The thing with scoliosis is that it cannot be cured, and there's no way of looking into the future and seeing how your choices will play out. Not doing anything is not the same as not choosing a treatment. Inaction *is* a treatment choice, and it carries with it it's own risks. It's up to us as parents to weigh that treatment choice against the other options and try to do what's right for our child, with the understanding that scoliosis is something they will always be dealing with no matter what road they take.

[Pooka1]

Negativity is just flack that we have to fly through.

One person's negativity is just another person's reality. I am just alerting folks to the potential blowback that might damage the parent-child relationship. Nobody needs that on top of scoliosis.

[hdugger]

Looking over your first post, two thoughts:

* With all possible caveats (I'm not a doctor, the long term results are unknown, the research is crappy, bracing is tough) studies are routinely finding a dose-response curve for bracing. The BrAist study, wearing a nighttime brace cut the risk in half (from 50% progressing to 25% progressing). Upping the hours to at least 13 a day further cut the risk to 10% progressing. Raising it above that made a much smaller difference. If she's handling the bracing well, I'd at least raise this with her doctor and see what he says. I'm sure there are good reasons on the other side for sticking with a nighttime brace, but it might be worth having a discussion about it.

* I hadn't seen your daughter's age. Because she's still so young, I'd second Gayle's recommendation about talking with someone about vertebral stapling. There are also caveats for this (it's relatively recent, so there's no research on what these kids look like 30 or 40 years down the road, etc) but it's shown some promise for younger patients like your daughter. She may be over the maximum curve size - I think it's 35 degrees - but it would be worth double checking that with the people at Shriners in Philadelphia. I have nothing but the highest respect for Betz - the doctor there who's leading the charge - and, although it's still surgery is much more minor surgery and it leaves the children with a flexible spine.