Why I decided to brace my daughter with the SpineCor

[Pooka1]

Actually, I think I was wrong about that. I think hope404 DID post in this thread and then deleted all the posts later. I should have quoted him/her in my post. Next time we get a drive-by woo-woo, I will be sure and quote them in my response.

In re bracing, I think the surgical techniques, fusion and non-fusion, will improve at a rate that will not allow time to sort out the bracing business. Some fusion surgery is curative right now.

[RugbyLaura]

Yes Sharon, there definately was a drive-by woo woo here, and in several other threads. Pam was onto her too.

Seems that all of her posts have been deleted - I didn't know this was possible. Am going to try it out now just for fun. Yeah, it worked, it's easy.

Hmmm, not sure where I stand on your point above...

Is spinal surgery ever likely to be preferable to a few years in a relatively easy to wear brace such as Spinecor? Speaking as a mum who has not come 'out of the other side', I'd say not. My daughter, however, would probably go for the instant fix & pretty clothes.

Friends whose children have had their surgeries are a lot more comfortable about their subsequent children so I guess maybe surgery could be better than years of bracing?? You've confused me now! Should I let Immi grow to a reasonable height then take the brace off & let her enjoy a brace free life until (probable) surgery? Get the surgery over with & forget about blasted scoliosis (at least for a while)?

Hmmm. Probably had a glass of wine too many, will have another think tomorrow.

[Pooka1]

Laura, those are all well taken points.

I sense your concern about "spinal" surgery. It certainly sounds scary. But so does emergency surgery to repair a ruptured ectopic pregnancy (saved my life!), open heart surgery and liver transplantation. Either the technology is adequate or it isn't. Apparently, it is in all these cases and more, "ick" factor aside.

I think the situation with AIS or some other type scoliosis in an older child can be (not always) a more straight-forward situation.

In re JIS, everything is dicier. If wearing an easy to wear brace is curative then that is definitely better than surgery, almost irrespective of the number of years and even if the surgery is curative. I think only Spinecor is making any noises about a brace being curative (reducing a larger curve permanently below some low threshold that is known not to worsen over time).

To date, though, I think the Ti ribs, growth rods, and VBS, though all experimental, have more data on benefits than any brace.

I don't think a hard brace can be said to be superior to even non-curative but vastly beneficial surgery. The night-time braces seem innocuous enough but have not been shown to be curative.

Just my opinion.

[RugbyLaura]

...emergency surgery to repair a ruptured ectopic pregnancy (saved my life!)

Mine too.

btw, you might be interested in the conversation re BrAIST here: http://www.scoliosis-support.org/ You might even recognise some of the participants...

[Pooka1]

Mine too.

btw, you might be interested in the conversation re BrAIST here: http://www.scoliosis-support.org/ You might even recognise some of the participants...

Wow. Great thread.

But we now have to wonder which is Concerned Dad's favorite forum, this or that?

That forum has a researcher posting which is a big draw. I fear we can't compete. ()

[emarismom]

"But so does emergency surgery to repair a ruptured ectopic pregnancy (saved my life!)"


Me three! Is there some type of connection here between ruptured ectopic pregnancies and children with scoli.

[christine2]

We will always be concerned dads favorite, I am sure!!

[Pooka1]

We will always be concerned dads favorite, I am sure!!

Speaking of which...

I note you posted "there" also.

I guess we have to sit here and silently wonder about your allegiances, also.

What next... Ti Ed secretly posting on some other group??

[christine2]

I do like the dialogue on the Braist study. I am having an awful time registering though, so need to go on unregistered. That is fine for now. I can stay incognito like Concerned Dad. Opps that back fired on him.

Concerned Dad How did you get registered so fast. I have been trying since Monday.

[RugbyLaura]

Christine... Incognito?? I think I may have spotted you!

Hi Sealy,
This is Christine from NSF.

pm me your email and I will try to get someone to sort you out.

Laura

[concerned dad]

Other Forum? I dont know what you guys are talking about.



Come on, I was just kidding. I was going to point everyone over there this morning. I've been out of town. Pretty neat that she is posting and addressing all the questions. Except perhaps the one Sealy asked. I had a hard time reading between the lines. Sealy made a comment about understanding that she cant address everything on a public forum. Is her point regarding the 30 degree thing? I mean, is Sealy basically saying

"your study is flawed because we know that most curves over 30 degrees entering adolescence will progress to surgery regardless of bracing" and "by including curves between 25 and 40 you're loading the bases" (these arent direct quotes, just paraphrasing from my faulty memory). And then she (Sealy) cites some papers about the 30 degree thing.

Did I read between the lines correctly? I'm not sure about the authority of that 30 degree asertion but it seems to be the table from the SRS site.

Now, it may be interesting to consider some other things she said.

1. The Danielson paper came out after her metaanalysis paper so it wasnt included. I wonder how the results would change if it was indeed included.

2. She reports anecdotally about physicians reporting patient uncomfort while wearing the SpineCor. This is contrary to our experiences here.

[Pooka1]

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.

I'll have to re-read Sealy's comments but is she saying that bracing of > 30* curves should not be done because it is known to fail? Is that equally true for T and L curves? Also, depending on number of patients, they might be able to demonstrate that bracing can delay progression enough until a higher bone age is reached. This is something that is often claimed but has never been shown to my knowledge.

[RugbyLaura]

2. She reports anecdotally about physicians reporting patient uncomfort while wearing the SpineCor. This is contrary to our experiences here.

I read her meaning to be uncomfortable intellectually rather than physically - ????

[concerned dad]

I read her meaning to be uncomfortable intellectually rather than physically - ????

Well, I spoke with a physician in the BRAIST study (our 'local' ortho) and he said his patients were physically uncomfortable in the SpineCor. He said their main complaint was the piece of plastic in front. He specifically outlined three options for us:
1. Stay with the SpineCor
2. If the SpineCor was too uncomfortable and we still wanted to feel proactive, switch to a nightime Providence
3. Unbrace (based on her skeletal age and the fact he doesnt KNOW if bracing is beneficial)

I mentioned before that I really like this doctor. But I am still confused by the comfort issue with the SpineCor. Makes me wonder if they didnt have it fitted right or applied correctly. Heck, Wong made the same point in his Hong Kong paper where he also looked into acceptance. See the table from his paper attached.

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

Oh, and in the table, S is SpineCor and R is Rigid Brace

[concerned dad]

I'll have to re-read Sealy's comments but is she saying that bracing of > 30* curves should not be done because it is known to fail?

No, I think Sealy is saying that by not including smaller curves the BRAIST study is loading the dice. The data she cites suggests that curves greater than 30* (entering PHV) have a high likelihood of progressing to surgery. Dr Dolan said they recently lowered the inclusion criteria to 20 degrees.