Does bracing work? style and success to date

[Bigbluefrog]

Please share your success with the brace you chose.

If the brace was not successful for your child please share it too.

I think as a parent we need to know the good, the bad and the ugly.
I want to believe a brace will work and I am playing with borrowed time, would you be so kind to share your experiences.

Thank you in advance.

I would love to see this poll,
remember: YSMV Your Scoliosis May Vary

[Pooka1]

My one kid wore a Charleston for about a year. The curve was stable for the 6 months before the brace, then moved 8* during the first 6 months in brace of nightly wear... she was very responsible about it.

She stopped wearing it when it stopped fitting. I suspect the curve again moved in brace and it was too uncomfortable.

My other kid never wore a brace. One was never prescribed even though she was 29* when diagnosed. I am VERY grateful she never wore a brace with what I know now and am a little perturbed my other kid wore a brace AND needed surgery. But she felt it was worth a try so that's good enough for me.

One caveat... there is some small indication kids with certain connective tissue disorders have a very low success rate with bracing. I think my kids are in this group. I think the evidence case for bracing in straight AIS would be cleared up and might look a little better if they accurately identified the connective tissue disorder group and didn't lump them in.

[Pooka1]

Oh and I think if they ever nail the compliance issue, the case for bracing would look a little better. It is likely the poor results to date are at least partially explained by lack of compliance but someone has to show that.

When you toss the uncontrolled bracing studies you are only left with a literal handful and most if not all of those have known problems (i.e., inadvertent stacking of T curves with higher propensity to progress in observation groups, etc.).

It is a curious thing that bracing is the standard of care despite no high quality evidence. Because it isn't a benign treatment, because compliance is often not perfect for good reason, a controlled study that included compliance monitoring was not only required but is obviously ethical.

[mamandcrm]

Rigo-Cheneau

My 8 year old daughter has been wearing a Rigo-Cheneau brace full-time since December (she was 7 then). Her curve in December was 35*. In May, at an out of brace x-ray it was 28*. In September at an out of brace x-ray, it was 14*. All out of brace x-rays were taken with 30+ hours out of brace. All measurements have been taken by the same orthopedic surgeon.

We consider her bracing to be a huge success thus far. She will remain in the brace full-time until early April, then if all still looks good (or better), we will reduce the brace time (hopefully to night-time only) and see how things go.

She has been comfortable in the brace, wears it 23/7, does not complain about it, wears it for most of her sports (save swimming and tennis). Few physical problems, all readily resolved.

Good luck with your research.

[AILEA]

My daughter wore a Cheneau brace for 5 years, since she was 13 until last month. Her lumbar curve was 38ª, now is 25º out of brace,
She is 18 years old now, and Risser 5.

I must say that she didn´t wore the brace as much as she should, because it was been a big deal for her. That’s why we tried Spinecor for some months, but it was doing nothing for her.

Would the curve´ve been reduced by herself without brace? I don’t think so.
Will the curve increase in the future? I don’t Know. Who knows??
But I will try bracing again if i had to make the decision now.

[Ballet Mom]

84535Oh and I think if they ever nail the compliance issue, the case for bracing would look a little better. [/B] It is likely the poor results to date are at least partially explained by lack of compliance but someone has to show that.

When you toss the uncontrolled bracing studies you are only left with a literal handful and most if not all of those have known problems (i.e., inadvertent stacking of T curves with higher propensity to progress in observation groups, etc.).

It is a curious thing that bracing is the standard of care despite no high quality evidence. Because it isn't a benign treatment, because compliance is often not perfect for good reason, a controlled study that included compliance monitoring was not only required but is obviously ethical.

Ahhhh, but you see, you don't need to have the Braist trial with kids not being braced to determine compliance rates. You just need a sensor in all the braces in all the bracing studies and you would quickly figure out if compliance is the problem...and no ethical question at all.

[CHRIS WBS]

I work with a 50-year-old attorney who wore a Milwaukee brace 23 hours a day from grades 7 to 12. During that time her curves were reduced to roughly 25 degrees. She has maintained that throughout adulthood and three pregnancies; and she shows no outward signs of scoliosis. She said it looks like her younger sister on the other hand is headed for surgery. She added she was the one kid in the family who did everything she was told while her sister was non-compliant.

[Pooka1]

Ahhhh, but you see, you don't need to have the Braist trial with kids not being braced to determine compliance rates. You just need a sensor in all the braces in all the bracing studies and you would quickly figure out if compliance is the problem...and no ethical question at all.

The lack of controls in the bulk of studies to date is arguably a far larger problem than compliance though both are an issue. You can't in prionciple interpret an uncontrolled study whereas you can correct data for compliance.

See the SRS statement about lack of controls resulting in the bracing literature essentially being worthless. You still seem to be struggling with why controls are needed... if you don't get that, you won't understand the SRS statement.

BRAIST is the first RCT that uses controls and is therefore the only ethical study in my opinion where you don't have so many kids wearing a brace in an uninterpretable study. Sure some kids will wear a brace in BRAIST and still require surgery or never would have progressed just with observation. But at least they did that within a controlled study that hopefully will yield some robust answers.

[Pooka1]

I work with a 50-year-old attorney who wore a Milwaukee brace 23 hours a day from grades 7 to 12. During that time her curves were reduced to roughly 25 degrees. She has maintained that throughout adulthood and three pregnancies; and she shows no outward signs of scoliosis. She said it looks like her younger sister on the other hand is headed for surgery. She added she was the one kid in the family who did everything she was told while her sister was non-compliant.

What did the curves start out at?

Are you saying she came out of the brace at 25* and that has never increased even to what it was prior to bracing? How often has she had radiographs since? How recently?

I wasn't aware there was evidence bracing would permanently reduce curves. If she can document this, maybe someone should write this up as a case study.

I'll also not we have a few folks here who wore Milwaukees and were compliant who still needed surgery. It's a moving target and we should never imply noncompliance ever results in surgery. Just can't know that.

[Ballet Mom]

You still seem to be struggling with why controls are needed... if you don't get that, you won't understand the SRS statement.

I'm not struggling with it at all, I can see why scientists want to do things that are unethical....look at all the information the scientists in the communist countries and Nazi Germany were able to obtain that scientists in the west wouldn't be able to obtain. I have a problem with knowing that bracing can work on many kids and not giving them the brace to give them a chance to avoid an increased curve and potential surgery.

I guess you disagree with the head of the orthopedics department at a major hospital who prescribed my daughter's Charleston Bending Brace and told me that he would have his daughter wear one if she had scoliosis. Apparently you are much wiser and more knowledgeable than him....and the other surgeons who declined to be involved with the Braist study.

[Pooka1]

I can see why scientists want to do things that are unethical....

Referring the BRAIST researchers as unethical is a litmus test for folks who do not understand the limitations of the bracing literature. There is a one-to-one correlation.

The unethical act is doing an umpteenth study with kids in braces where you have a pretty good idea many if not most don't need it and(or) will go on to need surgery anyway and where you can't tell after the study if bracing did a damn thing over and above observation.

SRS pointed out the lack of knowledge generated by these uncontrolled studies several years ago but it went unheeded EXCEPT for the BRAIST Study. Maybe the SRS should issue a more strongly worded statement to stop uncontrolled studies for the sake of these kids.

[tonibunny]

I don't know how useful this information is, but it's interesting. This is my curve progression since I was first diagnosed as a 6 month old baby in 1976.

I was immediately put into a Minerva plaster cast, and then a couple of years later I started to have EDF casts - exactly the same sort that are used for serial casting today, but I was too old for them to be able to provide any correction. I also wore Milwaukee braces from the age of about 3 - I'd tend to wear the casts in the winter and braces in the summer, possibly because of the heat. Starting out with this size of idiopathic curvature as a baby, I am convinced that without the braces and casts my curves would not have stayed in place as long as they did.

1976 1st July: Upper Curve 62, Lower Curve 32

1977 26th Aug: Upper Curve 62, Lower Curve 45

1978 16th May: Upper Curve 63, Lower Curve ?

1979 29th Jan: Upper Curve 63, Lower Curve 55

1981 Jan 15th: Upper Curve 62, Lower Curve 55
Not seen for a year.
Would need fusion at age of 9 or 10.

1983 Feb 14th: Upper Curve 62, Lower Curve 53

1983 Nov 11th: Upper Curve 64, Lower Curve 50
Shows deterioration

1984 Mar 30th: Upper Curve 61, Lower Curve 55
Curves deteriorating
Will need surgery sooner rather than later

1985 Oct 18th: Upper Curve 70, Lower Curve 59
Clearly needs surgery
I had my first set of operations at the RNOH in Stanmore in January 1986. I had a discetomy and anterior release on the 13th of Jan, followed by two weeks in halo-tibial traction, and then a Harrington Rod insertion and fusion from T1 - T12 on the 28th January. When I woke up, the first thing I heard was a nurse telling her colleague that "that space shuttle has just blown up" - it was the day of the Challenger disaster.

My curves were 75 degrees (thoracic) and 55 degrees (lumbar) immediately before this surgery, and 35 degrees (thoracic) and 41 degrees (lumbar) afterwards.

Following this surgery I wore a cast for 6 months to protect the fusion, and then a TLSO brace for another 6 months, but did not wear a brace at all after that; I was simply monitored to keep an eye on the lumbar curve. My upper curve settled down at around 45 degrees.

1987 Aug 21st: Upper Curve 45, Lower Curve 38
Rib prominence reduced to 20 degrees

1988 Feb 19th: Upper Curve 46, Lower Curve 40
Rib prominence now at 27 degrees

1990 Feb 21st: Upper Curve 45, Lower Curve 46

1992 Jan 10th: Upper Curve 45, Lower Curve 58
Rib prominence 29 degrees

I had my lumbar curve fused in 1994, and it went up to 70 degrees by the time of that surgery. That lumbar curve, which had mainly stayed put with bracing before I was ten, progressed during my adolescence when I wasn't wearing a brace.

Obviously nothing can be proven with this information but it is interesting I think Based on this, and despite having worn a Milwaukee and casts for the first ten years of my life, if I had a child with scoliosis I wouldn't hesitate to brace them.

[Pooka1]

Tonibunny!

Thanks for typing all that out. I think it is a very valuable post now and will continue to be so in the future.

I see I should have been careful to confine my remarks to the AIS bracing literature. I believe the SRS statement citing the lack of controlled studies that results in a miasma of a literature is for AIS.

I really have no idea about bracing/casting efficacy in the IIS and JIS crowd other than Spinecor (of all things!) appears to be promising for the JIS crowd (as opposed to the AIS crowd).

Thanks again for posting that.

Do you have an opinion about whether you would brace an AIS kid given the state of the literature?

[tonibunny]

Hi Sharon

It's very difficult for me to say whether I would brace a teenager. I know that wearing braces is absolutely hellish for teens, because they are so body conscious. I grew up used to wearing the Milwaukee so I didn't know any different; even though braces such as the TLSO and Spinecor are so much more comfy and can be hidden by clothes, I have seen how terribly difficult it is for teenagers who have hitherto grown up as "normal" kids to suddenly be faced with wearing a brace.

I think it would depend on the kid's attitude, and the size of their curve to begin with. Curves bigger than 40 degrees are most likely going to need surgery anyway. I do wonder if this is why my lumbar curve was left unbraced following my surgery when I was 10! I wore the Milwaukee due to having a very high thoracic curve, but a TLSO would have been fine for my lumbar curve. I think it was probably suggested at one point, because I remember my mother telling me that after the operation I could look forward to having just a little brace that sat around my hips.....then, when they brought me a great big post-op TLSO which came right up to my shoulders, I had a screaming fit and the nurses had to shut me in the treatment room to calm down I had been so looking forward to that little brace! I hated it so much they stuck me in another plaster cast for 6 months instead, and after that I was happy to have a TLSO for a further 6 months before becoming brace free for the first time in my life.

[Pooka1]

Hi Sharon

It's very difficult for me to say whether I would brace a teenager. I know that wearing braces is absolutely hellish for teens, because they are so body conscious. I grew up used to wearing the Milwaukee so I didn't know any different; even though braces such as the TLSO and Spinecor are so much more comfy and can be hidden by clothes, I have seen how terribly difficult it is for teenagers who have hitherto grown up as "normal" kids to suddenly be faced with wearing a brace.

Well those are very valid concerns also but I was specifically asking about the ethics of bracing in the face of the literature on bracing which is arguably a miasma wrapped in a train wreck due to the researchers' hands being tied. The bracing literature could be Exhibit A in explaining why most published research results are false.

I think it would depend on the kid's attitude, and the size of their curve to begin with. Curves bigger than 40 degrees are most likely going to need surgery anyway. I do wonder if this is why my lumbar curve was left unbraced following my surgery when I was 10! I wore the Milwaukee due to having a very high thoracic curve, but a TLSO would have been fine for my lumbar curve. I think it was probably suggested at one point, because I remember my mother telling me that after the operation I could look forward to having just a little brace that sat around my hips.....then, when they brought me a great big post-op TLSO which came right up to my shoulders, I had a screaming fit and the nurses had to shut me in the treatment room to calm down I had been so looking forward to that little brace!

Oh my gosh you poor thing! Oh my gosh. I am so sorry that happened to you. Life is so unfair. Bracing stories make me so depressed.

Those experiences obviously didn't adversely affect you because you are a treasure to this group and SSO in my opinion. Best of all, you gave me my great signature.

I just has one question... it appears you had double major curves but they only fused your top curve. Do you know why not the bottom also?

And you were fused at nine. Did you have any crankshafting? Did that contribute to the lumbar curve issue?