spinecor

[emarismom]

What has the research shown on this brace? I wonder what the differences are between the two braces?

I know that going forward during the school year with Emily in the Spinecor probably won't be too much of an issue. I really don't know if next summer I want to keep her in a 20 hour a day brace. It is so uncomfortable here. Just walking for the house to the car at midday gets you drenched in sweat. I feel so bad for her.

[RugbyLaura]

Michelle,

I truely believe that Immy's current consultant (3rd one!) would like nothing better than for Immy (and every other child in his care) to end up not needing surgery. Unfortunately he thinks this is an extremely unlikely (less than 5% chance). He, like Sharon's, has always been anti-bracing - stating that they are worse than useless; worse because they lead to muscle atrophy and encourage the curve to become rigid making surgical correction more difficult (let alone the discomfort).

He only uses Spinecor. He is a NHS doctor and has no financial incentive to use this brace. He does not guarantee that it will work, in fact I don't think he's too optimistic in Immy's case, but he thinks it is worth a try. Mainly he wants her to wear it to keep her flexible.

If the consultant was more optimistic - if he said that she'd stand a good chance of avoiding surgery if we stuck to the protocol - I'd probably be more rigid in my approach.

If this consultant, whom I trust with the treament of my daughter, indicated that there was a strong chance of avoiding surgery with Spinecor (even if based on flawed data/studies) - I would stick to the proctocol *to the minute* even if this meant missing out on certain aspects of her life.

[emarismom]

I'm sure that not all doctors are in it for the money. To be fair, Emily's ortho who has been with us for 4 years, has been great. He really has never even implied that surgery is likely or unlikely. Whenever I try to press him, he tells me things like "Michelle, I don't have my crystal ball."

I have become tired by all of this. I'm tired of xrays and MRI's. I'm tired of orthos, chiropracotors, and neurosurgeons. I'm having my own temper tantrum. I just want my daughter better-NOW!

[RugbyLaura]

Me Too!

I don't want to have to make these kinds of decisions & wonder whether we're doing the right thing. To spend the hours worrying & debating. OMG the hours I've wasted on forums!!!!!!!!

I must go & get some housework done but want you to know that I'm joining in your temper tantrum (I shall be bashing that vacuum cleaner into every table/chair leg in sight).

We're off to Florida next Saturday & I've no idea how my precious child is going to cope with the heat and restrictions. Restrictions which affect the whole family, for which she feels guilty! Makes you want to cry doesn't it?

xxx

[emarismom]

I want to cry alot!! Florida is hot! The humidity is awful. I assume you are visiting Mickey (Actually I think you posted about this a while back). Just try to head indoors when Immy is in brace.

Last year we went to Busch Gardens with Emily in the brace. I was able to get a Fast Pass type of card, because of the brace,that let us avoid Emily waiting in the lines. It was very convienient. (Dare I say a perk of the brace). Anyway, contact guest relations for whatever parks you will be going to and ask them if they make accomodations for children wearing a brace. Most of them will.

This information may be available online or you could just email them.

Just imagine if we got paid for all the hours on the forum!! What a paycheck that would be.

[RugbyLaura]

Thanks for that. Someone else has suggested the same thing but I felt too guilty to do anything about it (what is it with me & guilt?) I think I shall go for it now!

x

[emarismom]

Yes, you need to do it. There are MANY people who go to the parks and **fake*** being in a wheelchair, or having an illness (like MS), or something else in order to get those passes. You have a true and legitimate reason to get one so go for it!!

Besides I guarantee you won't feel guilty when you are standing in line in the hot sun for 60-90+ minutes to ride a ride!!

[Susie*Bee]

Ladies-- I hardly ever post in this area-- but I always read your posts! Just wanted to say how much I admire all of you for your strength and great love for your children. You deserve tantrums on occasion!

Laura-- I sincerely hope you and your family have a wonderful trip! Let us know how it goes. And YES, do try to get the fast pass if it's possible! It's horrendous waiting in long lines with the sun beating down on you... it would be so much worse in a brace. This isn't a time to feel guilty! Go and ENJOY! (And send me a pic later of you and Immy (and the rest of the family?) having a blast.)

[Pooka1]

What has the research shown on this brace? I wonder what the differences are between the two braces?

I searched for pubs at the time but only found one or two showing that it was effective on low curves (lumbar and thoracolumbar IIRC) which was confusing because our surgeon said it was specifically effective on my daughter's type of curve which is thoracic. Maybe a more thorough search of the literature would reveal the papers he is relying on.

[RugbyLaura]

Sharon, Where is Willow's curve positioned? Immy's is at T9 and is considered to be pretty high - perhaps because it is a very long curve. I ask because of the following:

http://cat.inist.fr/?aModele=afficheN&cpsidt=14061691


My problem is that all these studies seem to be AIS based. Immy had early onset, although she is now (if only because of her age) adolescent. Are they relevent to her??

Laura

[Pooka1]

Sharon, Where is Willow's curve positioned? Immy's is at T9 and is considered to be pretty high - perhaps because it is a very long curve. I ask because of the following:

http://cat.inist.fr/?aModele=afficheN&cpsidt=14061691


My problem is that all these studies seem to be AIS based. Immy had early onset, although she is now (if only because of her age) adolescent. Are they relevant to her??

Laura

I was never told were Willow's apex is. I just broke out the most recent x-rays I have and I'm pretty sure the apex is at either T8 or T9.

I read that abstract. I don't recall reading that one but it is in keeping with the very high success rate for lower (down the back) curves vice higher (up the back) curves though they still claim success for those.

I am wondering about the natural history control subjects wherein a majority of those had significant progression. That doesn't seem to jive with what I thought was the background natural history wherein more curves do not progress no matter what you do. But I'm probably confused on that.

In re AIS vice JIS, I have no idea if those are truly separate things or not. I suspect their are the same animal but I don't know.

[emarismom]

Laura,

I would guess that AIS and JIS are basically the same thing. The difference of course being the age of onset. JIS being considered as having a higher likelihood of progression because of the fact that there is just more time before maturity.

At this point I think Immy would probably be classified as having AIS.

Those two articles give promising results for the nighttime braces. Are these braces "hard"? How uncomfortable are they?

[Pooka1]

The braces are hard shell and require a break-in period.

Judging from my daughter's comments, once broken-in, they feel "normal" and it is strange to sleep without it. My daughter said she actually assumed the bent-to-the-side position on the mini-vacation when she didn't bring the brace.

She also just told me she can actually wear it while working on the computer or sewing and such. So I guess once you get used to it, you REALLY get used to it!

She does not mind the brace at all at this point and even added two hours to her sleeping time because she realized she was supposed to get 10 hours and not 8 hours.

In re efficacy, I think the studies show that it is about as effective as other hard braces, not more. The huge advantage is that you only wear it when asleep and it is very well tolerated, at least according to how my daughter feels about it.

[emarismom]

Well at this point it is an option to look into for the future. Since Emily is only 9 1/2 (I sound like a child, but I add that half in to make myself feel better ) we have plenty of time to think about our next move. I really don't have the heart to keep her braced until she reaches maturity

We are going to continue Spinecor for 4th grade and maybe 5th, but I'm not sure about sending her to middle school in a brace. Especially since that would be 4 years in it.

By the same token, I'm not willing to sit back and wait for progression to occur.

[RugbyLaura]

As they are not available where we live, I have not investigated the nighttime braces in any depth. I do feel that socially it must be so much easier to bear. No worries about which clothes to wear! That would be heaven to Immy right now. No having to find somewhere to change, hold people up & deal with their questions.

From the point of view of comfort, Immy has no problems with the Spinecor brace but its visibility is a problem to her.

I don't think any braces are as effective with high curves. When Immy was first diagnosed it was suggested that she should wear a Milwaukee brace. Needless to say I was a mess for a while.