Scoliosis Support  

Go Back   Scoliosis Support > Scoliosis > Non Surgical Room

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 19th September 2013, 04:43 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Randomized study on bracing shows effectiveness

My son was diagnosed too old to be offered bracing, so I never had to go through trying to get a teen to wear a brace. But I've followed the (so far) very muddy research on bracing, and was left with the sense that it was effective even though the research wasn't very clear.

The problem with the research was that patients weren't randomized. Basically, that means that it was possible that people who wouldn't progress were over-represented in the bracing group, and that bracing then just seemed more effective because of this.

So they did the first big randomized study of bracing in the US and the results were so conclusive that that had to end the study because, ethically, they couldn't continue to assign patients to the non-bracing group.

Here's a link to the research plus a New York Times article

The results are:

In the bracing group, 72% didn't progress to surgical range while in the non-bracing group only 48% didn't progress. The numbers got better the longer the brace was worn, with 90% of the kids wearing a brace more than 13 hours a day not progressing to surgery - almost twice the rate of the non-braced kids.

This still leaves lots of issues open - like, how many of the braced kids will need surgery as adults, and are there other downsides of bracing, and what's the trade off in psychological cost of bracing.

Bracing is a very individual choice, and some kids just aren't going to be able to do it. There's lots of things to balance. But I think this will make it easier for parents whose kids are bracing to feel like there's some point to encouraging their kids to weather it through.
Reply With Quote
  #2  
Old 20th September 2013, 08:03 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,358
Default Re: Randomized study on bracing shows effectiveness

Thanks very much for posting this, Hduggan! I know that bracing can be a controversial subject as some patients worry that there is little research to support its efficacy. This is a very interesting study and it's good to see some research is now being done.
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #3  
Old 20th September 2013, 08:36 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

I can't imagine what it's like to convince a kid to wear a brace - mine was never asked to. I could hardly get him to brush his teeth

But it's good to see some light at the end of that tunnel for kids who are trying to brace.

Looking at the numbers, it still seems like there's a bunch of over-bracing. Almost half of the non-braced group didn't progress to surgical range, so, presumably, half of the braced kids wouldn't have progressed either even if they hadn't worn the brace. Hopefully they can figure out how to better identify the kids who will benefit from bracing.

One thing I didn't love about this study is that they only had one end point - either the kid hit 50 degrees or they didn't. That's not really the only important question. A kid who's braced at 35 degrees and doesn't advance at all is very different from a kid who's braced at 35 degrees and advances to 49 degrees. I wish they'd gathered (or published) that data, since they will never be able to repeat this experiment (because they won't be allowed to have a non-braced control group). That's really unfortunate.
Reply With Quote
  #4  
Old 25th September 2013, 12:50 PM
nerak's Avatar
nerak nerak is offline
OrangeL
 
Join Date: Oct 2009
Location: Living in Surrey
Posts: 453
Default Re: Randomized study on bracing shows effectiveness

Hi,

thanks for posting this! For a variety of reasons I couldn't have surgery even though my curves are large. Bracing was the only other option available so we went for it! I wore a brace for about 18months between the ages of 13-15. It wasn't a pleasant experience and I was bullied both by children and teachers at my school because of it.

However, it did stop the progression of my curves almost immediately and for that I am grateful. We persevered with the brace and now I dread to think what could have happened to my spine if we hadn't gone done the bracing route.

Wearing a brace as a teenager isn't a great experience but it did help me in the long term.

love Karenxxx
Reply With Quote
  #5  
Old 1st October 2013, 11:06 AM
Smartie Smartie is offline
Junior Member
 
Join Date: Mar 2013
Location: Devon
Posts: 16
Default Re: Randomized study on bracing shows effectiveness

My son William is 2 years old and has congenital scoliosis. He will need surgery, but they are hoping to wait until he's at least 4 years old. Meanwhile he is wearing a brace 23 hours a day. We have been told that his top curve which is 48 degrees and is a rigid curve, will not improve with bracing, but will hopefully stop it getting worse before surgery is needed. His bottom curve is flexible and we are hoping for a 50% improvement with wearing the brace. He has only been wearing it since May and we can see the difference already as his rib hump doesn't look so prominent and he is standing up straighter. As before, he looked like he was bending forward. As he is very young, we have had no problems getting him to wear it, actually he tries to put it back on when we give him an hour break from it!!! Plus it has lovely pictures of cars and tractors and trucks, so he loves wearing it. Reading your experiences and also perhaps knowing that bracing can help, is really what any parent wants to know. I know from also having teenage daughters, that bracing wouldn't be a great journey for everyone as William has made life a lot easier with how he is adapting to it all being so young.
Sue x
Reply With Quote
  #6  
Old 18th October 2013, 07:16 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

Quote:
Originally Posted by nerak View Post
However, it did stop the progression of my curves almost immediately and for that I am grateful. We persevered with the brace and now I dread to think what could have happened to my spine if we hadn't gone done the bracing route.
That's really the hope - that bracing will sort of freeze your curve where it was at diagnosis. If your curve is smallish, hopefully this will mean that you won't ever require surgery.

I saw some report recently on a totally soft brace - it looked like it was just some kind of fabric material - but it didn't link to any research that I could find. If they could manage to find a brace that wasn't awful to wear and that actually held a curve, they could maybe keep even more kids from surgery.
Reply With Quote
  #7  
Old 18th October 2013, 07:20 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,358
Default Re: Randomized study on bracing shows effectiveness

That sounds like the Spinecor brace. I think it's a little difficult to find independent peer-reviewed studies about this brace though, as a lot of the info about it comes from the designers/stakeholders. I've heard mixed reports about its success, but most people do agree it's a lot more comfy to wear than a hard plastic TLSO.
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #8  
Old 18th October 2013, 07:26 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

Quote:
Originally Posted by Smartie View Post
I know from also having teenage daughters, that bracing wouldn't be a great journey for everyone as William has made life a lot easier with how he is adapting to it all being so young.
I'm glad to hear you son is adjusting so well to the brace. I had a friend who had polio quite young, and she talked about how happy she was when she got crutches made for her. And, how surprised she was at older kids who would throw their crutches against the wall. For her, the crutches were an improvement over life without them. But for them, they were a sign that they were losing something.

My son also has congenital scoliosis/kyphosis - although it didn't become noticeable until he was a teenager - and his top curve is also really stiff. Because he was so old at diagnosis, he sort of missed the normal surgery window, but fortunately his curve seems stable so he has time to figure out how he wants to proceed.

Best to you and your son.
Reply With Quote
  #9  
Old 18th October 2013, 07:33 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

Quote:
Originally Posted by tonibunny View Post
That sounds like the Spinecor brace. I think it's a little difficult to find independent peer-reviewed studies about this brace though, as a lot of the info about it comes from the designers/stakeholders. I've heard mixed reports about its success, but most people do agree it's a lot more comfy to wear than a hard plastic TLSO.
I don't think it's a spinecor, but it might be similar - it's something called a tornado suit.

It came through yesterday in my google feed from some PR link and, although the PR piece mentioned research, I can't find any link to back it up. Here's the PR piece

http://www.prleap.com/pr/211914/

Without any evidence, I'm pretty wary, but I'll try writing to Dr. Morningstar and see if he can provide any more info. It just seems odd that any brace-like thing would 1) reduce a curve and 2) do anything at all when only worn for 1 to 6 hours.
Reply With Quote
  #10  
Old 18th October 2013, 08:36 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,358
Default Re: Randomized study on bracing shows effectiveness

Oh, Mark Morningstar's Tornado Suit? I'd be interested to see independent peer reviewed studies of that too, if you can find any I'm a bit wary of anyone connected to the CLEAR Institute as they do make bold claims and (in the past but maybe not so much now) would focus on how awful and terrible spinal fusion surgery is, rather than giving decent evidence that their own treatment works. I'm very open to reading decent research and studies on all of these nonsurgical techniques though, as obviously it would be wonderful to have an effective treatment that doesn't involve surgery.

As far as bracing goes I personally think that the high-profile Milwaukee can be very effective in some cases - however it's just not tolerable for most people to wear for years on end. I wore plaster bodycasts (during winter months) and Milwaukees (during summer months) for eight years - both treatments which some doctors have claimed are "barbaric", but they held my progressive infantile idiopathic double curve in the high 60s/40s for most of those eight years. These were definitely effective treatments in my case, but they're not at all pleasant. It's really good that people are continuing to attempt to design better braces!
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #11  
Old 18th October 2013, 09:48 PM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

Yeah, the Milwaukee is what my son would have had to wear, if they'd found his curve earlier, because it was too high to be touched by any other brace. He used to have panic attacks about getting a deep breath, even without a brace, so I don't think he would have made it through that.

I'm pretty CLEAR-avoidant too. I find their scare tactics about surgery really beyond the pale. We had some poor woman show up on NSF who had a kid with a largish curve (I think it was in the 40s, maybe, even after the CLEAR treatment) and some other medical issues as well, who'd been terrified out of ever considering surgery. That's just a really bad place to be in to have a kid who actually needs surgery (or who probably will need surgery) and to have a medical professional convince you that surgery will kill/paralyze/etc them. That's an inexcusable thing for a medical professional to do to a parent.

I'll let you know what/if I hear back from them.
Reply With Quote
  #12  
Old 22nd October 2013, 04:45 AM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

I received a response back from Dr. Morningstar. The research is interesting, but not in a peer-reviewed journal (and not yet posted online in the journal it's in).

I wonder if the team in Italy has any thoughts about it. You vetted them through Dr. Mehta, so I could filter things through them and have them vetted-once-removed

The suit is interesting. It really is a fabric - I think the same stuff they use for those stretchy tablet cases - and it anchors around the thigh. Because it's anchored around the thigh, you have to be standing/moving around for it to work. Hence the reason why the wear is so limited. I'm not sure that people *aren't* wearing it longer than for a few hours - but it's only their active hours that count.

He did a retrospective study on two groups of patients in his (CLEAR, I suppose) clinic - one a group of teens and one adults (although it sounded like it was just adults with degenerative scoliosis and not adults who'd previously been diagnosed with AIS). Overall, both groups showed stabilization/improvement, with the amount related to the type of curve. Some curves (like thoracolumbar) showed more than a 10 degree improvement in both groups while others (like double-major) showed minimal improvement.

This has all kinds of disclaimers, like who did the measuring, how, would an independent person see the same changes, etc. etc. A personal journal isn't a ton better than a blog post. But it's interesting enough that I'd at least like to talk to him and see what else I can find out. Or see what someone else I respect knows about it. I'll let you know if I find out anything more.
Reply With Quote
  #13  
Old 22nd October 2013, 04:41 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,358
Default Re: Randomized study on bracing shows effectiveness

I think asking the Italian guys for their thoughts would be a very useful thing to do. Min is very old and frail now and sadly not in the best of health, otherwise I would try to talk to her about it. She gave me her address and phone number and asked me to keep in touch when I met with her, but I am reluctant to given how vulnerable she now is. She had an excellent opinion of the Italian guys though and it sounds as though they are her natural successors as far as innovating nonsurgical treatments go.
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #14  
Old 9th January 2014, 08:44 AM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 121
Default Re: Randomized study on bracing shows effectiveness

Well, I didn't write the ISICO people for their thoughts on the Tornado suit, but I did find this comment from them to someone else asking about it. Please excuse Google's very bad translation from the Italian!

"reproduce below in his own words: "the continuing search for viable solutions and scientifically valid for the treatment of scoliosis ..."
ISICO is continually looking for solution valid, scientifically proven for the treatment of scoliosis, there are currently no scientific publications that demonstrate the effectiveness of this corset, so we can not make a judgment about it. The currently available literature tells us that the corsets worn part-time, or less than 18 hours a day, are not effective, so the fact that this corset is declared effective by indossamenti of 6 hours a day, raises some concerns. Know that we too do not mind specialists prescribe corsets part-time, especially to small children like her daughter!
As written in other posts, browsing the internet offers great opportunities for information and updates, even for non-experts, but has many pitfalls often, sometimes to achieve business objectives is exploited the fragility of the parents, relying on their own desperation of a parent who is unable to accept the harsh prescription of a rigid corset for her child, I sailed a bit 'on the site from she linked, are not explained the mode of operation of the corset, or the theory of biomechanics remedy proposed by the inventors of the corset, there is only materials relating to the courses and how to have this kind of corset, these aspects, they do but my skepticism.
I greet you cordially "

I don't understand every sentence, but I think I'd say that's a big thumbs down from the folks at ISICO Basically, they think no brace is effective if it's worn for less than 18 hours a day, there are no scientific studies to support it, and the developer does not explain the mode of operation of the biomechanics behind it.

I particularly liked their caution "sometimes to achieve business objectives is exploited the fragility of the parents"

I couldn't have said it better myself.
Reply With Quote
  #15  
Old 9th January 2014, 10:50 AM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,358
Default Re: Randomized study on bracing shows effectiveness

Thanks for that, Hduggan. I can't say that I am surprised, to be honest! Morningstar was a director of the "Pettibon Biomechanical Institute" which was a precursor of CLEAR.

You may be interested to know that Morningstar, Stitzel (former director of the CLEAR Institute), Elmer (co-inventor of the Tornadosuit and Pettibon practitioner), Dovorany (former lead instructor at the CLEAR Institute), and Siddiqui ("Dr Sid", CLEAR Institute chiro) have set up the "International Scoliosis Chiropractic Board", which is intended to promote the treatments that they have devised. It appears that they are all distancing themselves from the CLEAR and Pettibon names, but are now offering the same treatments under various new names including "ScoliSMART", "Scoliosis Boot Camp", and "ARC-3D". The Tornadosuit also appears to be offered under the name of "Scoliosis Activity Suit".
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT +1. The time now is 06:30 AM.


Powered by vBulletin® Version 3.7.1
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
(c) Scoliosis Support