spinecor

[christine2]

washing spinecor

Hi everyone

Dr. Colliard told us to put the brace in 2 seperate laundry bags and wash in washing machine on cold with detergent and oxy clean then put in dryer on low. It takes me about 1 1/2 and works great. The bands definately feel tighter after washing.

As far as the body suits we have tryed a ton of things but my daughter is most comfortable in the spinecor bodysuits. I figure they are expensive but as important as a good pair of shoes!!

Christine

[Christina_in_NC]

We had our appointment in Baltimore with Dr Sponsellor and the orthotist who fits the spinecor - Monday before Thanksgiving.
It was very disappointing - although my daughter is handling it all very well. Her curves have conitnued to worsen - from 36T to 44T and from 30L to 38L. Basically that is a degree a week since our first x-rays two months ago. She is risser 0 at 13 years of age. We did go ahead and try the spinecor on (after all we had driven 5.5 hours to be there) - but in brace x-rays showed less than 2 degree change in any curve.
Originally our plan was to try hard to convince them to let us take spinecor and at the very least try it for several months. If spinecor was not a great option we were not going to use a brace at all. But, with the news of the rapid collapsing of her spine that all changed. It may be the spinecor would still help, but as fast as the curve is advancing and with 2 curves (they confirmed it is a true double curve and not one curve with a compensating curve) we realized we need to do whatever we can do even hold it so she can grow some.
We loved the spinecor and really still feel it is a wonderful brace and well worth it for anyone that fits the criteria.
Disappointed, but glad we had the x-rays taken and know where we are. The rigid brace fitting is set for Tuesday in our hometown.
Christina in NC

[gerbo]

very upsetting, all of us know this feeling that every review might results in something similar showing on the x-rays. If there is improvement or results are stable; great, and we relax a bit again, until the next follow up, sometimes curves are getting worse and than there is this feeling of disappointment, sadness, guild (?) etc.

At such a moment, and i have said this before, it sometimes helps to get into "worse-scenario mode" and work out what is the worst what can happen from there. In your case this would be surgery, and as one of your surgeons already suggested; that isn't such a nightmare as you might imagine and the surgical forums are full of stories of succesful outcomes of surgery with people able to lead entirely normal lives after.

Realising that the worst isn't that bad, you just about can try to relax a bit and hopefully cope better with what is coming at you currently.

What would i do?

1) realise that whatever i do, with these kind of curves there is a good chance that whatever brace i use, it might not make any difference

2) make sure that the spinecor is fitted according to guidelines. Maybe send a photo by email to the canadian doctors to see whether they can comment

3) be patient, further improvement might follow in due course

4) make sure you're doing torsorotation correctly (i understand you're trying this, how exactly are you doing it??)

5) again, try to be strong, you'll cope, even if "the worse" would happen

Sorry Christine, this is as helpful as I can be at this stage, I know it isn't much good in you situation, take care though

best wishes

gerbo

[Celia]

As Gerbo says no brace will likely hold her curve given that her curves are now at 44 degrees. However....spinal fusion is not the only surgery out there. I'm sure many are aware of Vertebral Stapling offered by Dr. Betz and Dr. Andrea at Shriner's Philly. I think 44 degrees is right at the borderline for Stapling and the advantage, even though it's experimental is that fusion can be avoided and your daughter will still have flexibility. The main problem with this scenario is that by the time your daughter gets an appointment with Dr. Betz or anyone else, her curve might be even greater and she will no longer qualify for this procedure. What I would do in your situation is put her in a corrective cast for a few months until you can figure out what the next step should be. One of the benefits of going into a cast at this point in time is that your daughter is obviously going through a growth spurt and the cast may in fact "correct" her to a lower level and the spinecor might still be an option for her. Yesiree folks....I'm one of those "never say never" types

[MATJESNIC]

Stapling is for younger kids with lower curves. Nicole was only 12 with a smaller curve than Christina's daughter and Dr. D'Andrea said she was too old and her curve was too big.

Melissa

[LindaRacine]

And, unfortunately, there is no guarantee that stapling will allow a patient to avoid fusion surgery, especially with "larger" curves.

--Linda

[Celia]

Melissa,

Didn't they reject Nicole because she was a risser 2 ? I don't know the criteria but according to the chart on page S259 "An Innovative Technique of Vertebral Body Stapling..." by Dr. Betz et al., the oldest patient appears to be a 14 year old.



http://www.scoliosis-support.org/uploads/stapling1.pdf

[MATJESNIC]

No, Celia,
Nicole was still at a risser 0 when we saw Dr. D'Andrea. The only thing I don't know about Christina's daughter is whether or not she is done with her big growth spurts. Nicole is done with hers. I know they like to perform the surgeries on kids who still have a lot of growth ahead of them. Even though Nicole was at a 0, she didn't fit that criteria.


Melissa

[Christina_in_NC]

I agree that it does not look like the stapling is an option. Even if she were borderline now, it would take a couple of weeks to get the whole process going and as quickly as her curve is collapsing it would be nearing the 50 degree mark in a few weeks. From what I've seen though, I think even though she is still risser 0 that she is at the end of that stage since it would appear that she is growing pretty quickly right now - mostly based on the rapidity of the curve progression.

Thanks Gerbo for the encouragement.

DD really is doing well - "God gave me this back and He can do what He wants" is her attitude. We trust that god will handle this...

At the same time we know the statistics are surgery for her - we are hoping to delay that process until her back is done growing.

1 - We will continue to do the torsion exercises - we are doing them on a machine at the gym as outlined in the article...
2 - we will continue with PT and/or chiro for ache relief and for flexibility in her back muscles
3 - We know that no matter what she will most likely need surgery and the Dr in Baltimore said he would be happy if it could be put off until this summer - but we are hoping for more time.
4 - We are being followed by the surgeon here - we really love him - we will have an in brace x-ray in Dec. DD is willing to be a good patient with the brace and has no issues wearing it in front of other people, so unless it really seems not to be doing anything she will wear it until done growing or until surgery.

Christina

[MATJESNIC]

Christina,

Your daughter has an awesome attitude. I hope she and Nicole continue to correspond because maybe she can have a positive influence on her. Nicole can be extremely negative at times.

Good luck with the brace. Keep us posted.


Melissa

[gerbo]

christina; both of you seem to be doing as well as one could expect (or even better) in the circumstances

re torso rotation; did you actua;lly find a proper medx machine? To me the pitfalls to look for were; ensuring the pelvis stays stable whilst twisting (so the twist really comes from the torso and not also from pelvicmovements) 2) ensure equal exposure between both sides, so the weaker side can catch up.

best wishes

gerbo

[Christina_in_NC]

Gerbo,
no it was not a medx machine. I will see what they are doing to make sure the pelvis is still.

Melissa - she loved talking to Nicole - so I'm sure she'll stay in touch! Thanks again!

I'm sure our days will go up and down, but we'll make the most of the good ones! Tomorrow is casting for the brace...
Christina

[gerbo]

i am sitting behind lisanna, holding on to her pelvis so it is stabilised on the seat, so she cannot twist it (a lot) and all the movement comes from the torso

gerbo

[pat]

spinecor

Uggg, moving the spam out of the way. p

[Christina_in_NC]

Thanks Gerbo- we may give that a try. I'll be careful to notice exactly what they are doing next time at the gym!
Christina