Why I decided to brace my daughter with the SpineCor

[tonibunny]

Well, I have to admit when I saw some posters from here posting over there, my lower lip involuntarily stuck out and started to quiver. I'm over it now (for the most part).

I have looked at that forum; my impression is if this one is slow, that one is glacial.

Awww be nice to us Sharon, we're only a little forum and we're based in the UK so we're probably very quiet when US peeps visit Lots of us are members here too and we regularly send people over here and to Spinekids, so there's no need to be worried that people will pick one forum over the other, there's room for us all

Toni (mod at SSO) xx

[RugbyLaura]

Spinecor comfort

Well, I spoke with a physician in the BRAIST study (our 'local' ortho) and he said his patients were physically uncomfortable in the SpineCor.

Concerned Dad, I obviously got that completely wrong! I honestly thought they were 'uncomfortable' with Spinecor from a medical point of view

Heck, Wong made the same point in his Hong Kong paper where he also looked into acceptance. See the table from his paper attached.

That table is awful! I assume you have read Spinecor's rebuttal? When I first saw the results of the Wong study I had a major wobble & was very distressed. Having looked further into it & spoken to Mr Mills I can now see its huge flaws.

It would be very interesting to hear the perspective of someone who has worn both a Rigid brace and a SpineCor.

Immi has worn both - although she only wore the TLSO for about half an hour! I assume they get easier with time but for her there is no comparison. A friend's daughter also wore a TLSO, for about a year (I think??), before swapping to Spinecor - for her, too, the Spinecor won hands down in terms of comfort. Unfortunatley he no longer visits the forums so I can't put you on to him. You'd have liked him.

I really don't know where they're coming from... Maybe people who seek an easier wearing brace are less stoic that those who accept the TLSO without seeking an alternative? Immi really has very little issue with wearing it (Spinecor) - in fact the worst thing for her is the 'faff' of putting it on & taking it of which, I note in the Wong study, is one of the least complained of aspects. My biggest problem with it is that capital C in the middle. It's just too gimicky. But maybe that's just me, being British.

I get really frustrated that Spinecor is dismissed so easily - hopefully that will change. We now have 5 surgeons in the UK prescribing Spinecor; they are considered 'mavericks' by the rest of the surgeons. However, they (the rest) are all watching with interest and looking forward seeing the results of the collected data (which should be out in about 2011). At least then we should know one way or another...

Hi Toni, I sent Mark an email about Christine's inability to register (he was the only mod around at the time) - could you have a look too? Thanks!

[concerned dad]

I honestly thought they were 'uncomfortable' with Spinecor from a medical point of view

Well, perhaps it is both. Dr Dolan said that both the doctors and patients were uncomfortable. I dont see how a doctor could be physically uncomfortable with someone else wearing a brace.

[tonibunny]

Hi Toni, I sent Mark an email about Christine's inability to register (he was the only mod around at the time) - could you have a look too? Thanks!

Just taking a look now Sorry to butt into your thread chaps!

[Pooka1]

Awww be nice to us Sharon, we're only a little forum and we're based in the UK so we're probably very quiet when US peeps visit Lots of us are members here too and we regularly send people over here and to Spinekids, so there's no need to be worried that people will pick one forum over the other, there's room for us all

Toni (mod at SSO) xx

Well, you have the large advantage of having a researcher posting over here. So naturally I would be jealous.

Do you find you need to do much moderating? Would you say it is ever a runaway train?

sharon

[concerned dad]

When I first saw the results of the Wong study I had a major wobble & was very distressed. Having looked further into it & spoken to Mr Mills I can now see its huge flaws.

Yes, but I wonder why there was never a rebuttal to the 2005 Weiss paper. Maybe there is and I just havent seen it. But it deals exclusively with girls in the growth spurt and Weiss says 11 out of 12 of them failed (curve increased 5 degrees) with the SpineCor.

Did you ever ask Mr Mills his opinion about that? I didnt bring it up with Dr Rivard or Colliard. But, it sure would be interesting to hear what a medical professional thinks about that paper.

I mean, is it possible that the SpineCor is a good brace and can even gradually reduce a scoliotic curve in girls who are growing slowly. But might it fall short when aggressive growth occurs? I'm not saying it does, just asking. That's why I asked on the SpineCor thread if we have anyone here who has a child braced with the SpineCor through her adolescent growth spurt. It MAY be one thing to brace with SPineCor after the growth spurt (like my daughter) or before the growth spurt, Like your daughter. But what happens during that growth spurt. If I hadnt seen the Weiss paper I wouldnt even be asking. But it is a troubling loose end.

[tonibunny]

We have a team of moderators and there's usually at least one mod online during the day as some of us work with computers anyway and can keep a window open on the website Most of the moderating is to keep posts in the correct forum, remove swear words, and help with registration problems but very occasionally (as with here) we'll get someone posting about emotive subjects such as "miracle" alternative treatments and have to be careful to keep the ensuring discussions calm.

[concerned dad]

Well, you have the large advantage of having a researcher posting over there.

Yes, but we have you here Sharon. And I swear, I was rereading Dr Dolans posts and thought it could have been you writing in defense of sound scientific practice. If she had thrown in a horse comment or two I would have found you out. When she said (regarding PT) "I commend the dedication of these clinicians to conservative treatment and I look forward to reading results of large-scale controlled trials from their institutions." I had to laugh out loud because of the whole "controlled study" thing we had going on in December.

And I just want to say Happy B'day CD. And CD isnt Concerned Dad.

[RugbyLaura]

That's why I asked on the SpineCor thread if we have anyone here who has a child braced with the SpineCor through her adolescent growth spurt. It MAY be one thing to brace with SPineCor after the growth spurt (like my daughter) or before the growth spurt, Like your daughter. But what happens during that growth spurt. If I hadnt seen the Weiss paper I wouldnt even be asking. But it is a troubling loose end.

Here's my problem. I don't know of anyone who has made it through...

But then I only 'know' half a dozen girls. I fully expect Immi's curve to go crazy at about 12/13, like the others.

However, our 'sceptical' surgeon says that he sees a girl who presented with Immi's size curve at similar age who is now going through weaning and maintaining a mid 20s curve.

And to put it into perspective; I have known far more kids in TLSOs and none of them has made it through either.

I will certainly ask Mr Mills about the Weiss study - I have a feeling that I already have but everything gets a bit jumbled. He won't mind me asking again! The problem is that it's hard to find any kind of impartial study.

(Ahh, got the CD reference )

[jillw]

...is it possible that the SpineCor is a good brace and can even gradually reduce a scoliotic curve in girls who are growing slowly. But might it fall short when aggressive growth occurs? ...... It MAY be one thing to brace with SPineCor after the growth spurt (like my daughter) or before the growth spurt, Like your daughter. But what happens during that growth spurt......

Concerned Dad, I have wondered the same thing about spinecor and assuming things remain fairly stable with my daughter's curve (and that's not something I'm taking for granted by any means, but just for the sake of argument) I'm not sure what we'll do when she approaches peak velocity growth. We still have a few years until that occurs so maybe future research will give me more guidance on that issue. However as things stand now, I'm inclined to think I wouldn't want to chance it with spinecor alone (unless her out of brace curves had been brought down to nearly nonexistant). I had been thinking maybe a hard brace during the night (when there isn't as much chance for muscle atrophy due to near inactivity anyway) and maybe spinecor by day? Of course that would require 2 different doctors to agree to work together and i'm not sure many are thinking outside the box on that yet. Dr. Rivard had said on a couple occasions that the challenge would be getting her through that future peak velocity growth spurt....

[Pooka1]

Yes, but we have you here Sharon. And I swear, I was rereading Dr Dolans posts and thought it could have been you writing in defense of sound scientific practice. If she had thrown in a horse comment or two I would have found you out. When she said (regarding PT) "I commend the dedication of these clinicians to conservative treatment and I look forward to reading results of large-scale controlled trials from their institutions." I had to laugh out loud because of the whole "controlled study" thing we had going on in December.

Science is science.

And I just want to say Happy B'day CD. And CD isnt Concerned Dad.

Great thought!

With the possible exception of Sir IN, CD has contributed the most to science I think. It is hard to overstate the magnitude of the contribution CD made even before all the newer sciences were able to corroborate the idea. It is the quintessential paradigm shift. He changed everything by finding the real explanation after a few thousand years of honest but incorrect attempts.

It is arguably the single largest contribution to science and therefore to humanity to date.

[Pooka1]

Most of the moderating is to [...] remove swear words, [...]

How are people then able to react properly when someone posts a Cobb angle in tenths of a degree???


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[tonibunny]

How are people then able to react properly when someone posts a Cobb angle in tenths of a degree???


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Sorry for taking this thread off topic, back to Spinecor!

Toni xx

[RugbyLaura]

Yes, but I wonder why there was never a rebuttal to the 2005 Weiss paper. Maybe there is and I just havent seen it. But it deals exclusively with girls in the growth spurt and Weiss says 11 out of 12 of them failed (curve increased 5 degrees) with the SpineCor.

You've got me thinking... 'failure' is having increased by 5 degrees? But that is within the margin for measurement error. Seems rather daft to me. Given the rate at which these curves often (usually?) grow during PVG (is that the correct abbreviation?), +5 degrees looks more like success than failure?

I'd like to have another look at this study - could someone point me in the right direction, please? I will ask the question about a rebuttal once I've had a look.

And Toni, I'm sure they'll love the little light-hearted detour.

[concerned dad]

the Weiss paper is

Brace treatment during pubertal growth spurt in girls with idiopathic scoliosis (IS): a prospective trial comparing two different concepts.Weiss HR, Weiss GM.

Pediatr Rehabil. 2005 Jul-Sep;8(3):199-206.

Yeah, 5 degrees. I'm not saying I endorse the paper. I'm just saying I would like to know more. It is troubling. While discussing Colliards paper he makes the case that:

In a recent publication, Coillard et al. [23] present the post-treatment results of the SpineCor. Inclusion criteria for that outcome study were the diagnosis of idiopathic scoliosis, an initial Cobb angle between 15-50° and a Risser sign of 0-3. Survival functions were presented leading to the conclusion that 'for patients followed up from the initiation of treatment to 2 years follow-up, there was an overall correction/stabilization for 93% of the patients'.

One important problem of this study, however, has to be discussed: Scoliotic curves progress mainly during pubertal growth spurt [24]. As can be seen in Figure 3 [25], growth spurts in girls comprises only a short period of time while the age of 6-10 years, usually there is no change of curvature even in an untreated patient with a curvature of >20°. On the other hand in post-menarchial girls with Risser stages 2 or 3 in minor curvatures, no change of Cobb angle has to be expected [26, 27]. So, the inhomogenous age group (6-14-years-old patients) offers no chance to distinguish between patients at immediate risk or at no risk for further progression of the curvature. A study of patients treated with the SpineCor brace during pubertal growth spurt seems desireable.

The paper Weiss is discussing refers to Coillards 2003 paper . In her more recent paper she reported the results consistent with the SRS bracing study criteria (ie age >10 and premenarchal, Riser 0,1 or 2....) so perhaps her recent paper addresses (indirectly) Weiss's critique. In fact, looking at it now, that seems to be the case.