spinecor

[Celia]

Actually, I'm feeling better today. I think I'm suffering from sinking ship syndrome LOL!!! Nicole just went through surgery and a few other people are having problems so it's natural for me to feel the way I do. I have to keep reminding myself that Deirdre's curve is at 2 degrees!!!!!! What am I complaining about??????! Somebody slap me!

[RugbyLaura]

SLAP

Hey, we all have our dark moments. That's what friends are for!

Laura x

[Celia]

I feel sooooo much better now!!!! Thanks Laura! LOL

[cherylplinder]

Jill,
I know more than one person that has scheduled a visit early because of a rapid growth spurt, me included. Just looked like it was time.

[Celia]

A very talented lady I know superimposed Deirdre's x-rays from March 2007 to the latest one taken in August 2007. I've been a little worried about the curve in her neck that doesn't seem to going away however....I think it's directly related to the shoulder tilt caused by the brace and I don't think it's absolutely necessary to have such a severe tilt to her shoulders. Anyway... all in all I think there has been some improvement, no????

http://i41.photobucket.com/albums/e2.../Deirdre10.gif

[RugbyLaura]

Celia, Looks pretty good to me! Certainly very different from where she started at 18 months old!! Hard to do, but I try to remind myself that I have a happy, healthy, beautiful and kind daughter (with a slight kink in her back). I do understand that if we weren't worriers, pushers & investigators our children would be wearing horrible hard braces (in Immy's case, not even that yet as 1st consultant said "come back in a year"). BUT, as you've already said, we must trust our decisions and try to relax & enjoy life! When Immy's shoulder tilt became very exagerated it was due to growth. We let #4 out a VERY LITTLE to make her more comfortable & waited for the next appointment which was only 3 weeks away. If this happens again I will phone Mr Mills & discuss it with him.

Jill - We don't go to Montreal but I hope this might help to answer your question.

Leigh - I guess it must be so much harder for older children and with the diabetes too Taylor must really have a case of the "Why me?"s. And I don't blame her! Re the twisted posture in brace - to be honest, I don't think it does get any less obvious, but you do get more used to it. The twisting is addressing the curve. At 10 Immy is really not bothered about how the brace looks & has been known to run around the garden wearing nothing else, she'll be going to secondary school next September and I imagine that's when the body issues will start. But yes, I do spoil her on shopping trips.... Mind you, I probably used to before all this anyway

Laura

[Celia]

Immy is only 10? This could be a good thing.

It just takes one look at that x-ray 5 years ago to put everything in perspective for me. Any little wrinkles or "kinks" can be ironed out - no problem! She looks more centred in the latest x-ray. Has anyone noticed her lung capacity looks so much better compared to the March x-ray?

[desheah]

celia,

deirdre is definitely looking good. you are right about the lung space. perhaps all the years of casting made her more barrel chested (is that the right term?). this most recent x-ray looks like her ribs have opened up quite a bit.

deep breath! that's what i keep on telling myself. it usually doesn't work, but i keep saying it!

on another note, just made an appt. for nov. 12th for lucas' next checkup in montreal. keeping my fingers crossed.

this is to everyone:

has anyone had an out of brace x-ray for their child? i'm really curious how big of a difference there may be. lucas has not had one in the last year. i know that this is the typical protocol, but is there a recommendation on ever having an out of brace x-ray. i guess i'm asking all of you who are up on reading the spinecor manual. wondering if i should go some place local for one . . .

thanks for your response,

deshea

[Celia]

How does that song go again???


There's a light at each end of this tunnel, you shout!
Cause you're just as far in as you'll ever be out
and these mistakes you make, you'll just make them again.
If you could only just turn it around.

and then of course..... it's advised that you breathe!


I know nothing about *out of brace x-rays*

[alabama mom]

Hi guys. I haven't been online much lately, I am always so busy. I wanted to post on my daughter's progress.
We went back to Drs. Rivard/Colliard for our appt.(we went back 2 months earlier than we were originally scheduled because my daughter grew 5 cm/2in from mid may to mid sept!) I was SO scared that things had worsened.
We were so happy to find out that she had improved from T5-10R:19 deg/T10-L3L:19 deg, down to T5-10R:15 deg/T10-L3L 13 deg! Dr. Colliard said that it was a crutial time for her, with such a big growth spurt (2 in. and aprox. 15 pounds), and that she did great. She changed out strap#2, as my daughter had simply outgrown it. She says that her brace is much more comfortable now.
We are supposed to go back in Feb. 08, but if my daughter continues to grow this rapidly, I will probably go sooner. This is obviously not that easy for us, as we travel over 1300 miles one way, to get there. But, I will happily continue to do so, because I see and believe, that this can help my daughter.
I wanted to share this with you all, because posts like this are what made me drive to Montreal for this brace. This forum, and sharing all of our experiences, is a great help to worried and confused parents. Good luck to all of our kids!
Nancy

[jillw]

Hi Nancy, Thank you for sharing! How old is your daughter now and how long ago was she diagnosed. How long has she been in spinecor and what was her initial correction (if you don't mind me asking- its probably been posted before but I couldn't find it with a quick search)? I hope things continue to go so well!!!

[alabama mom]

Hi Jill. Thank you for the well wishes.
My daughter is 10. She has been wearing the spinecor since April 07. Her initial measurement in Nov 06 was aprox. 18/17. We were told to wait and see, but by April 07 she was 23/19, and we got her in the spinecor. The initial correction was 19/19, and then 19/18 when we returned in 1 month. I was a little disappointed at first, since some of the other kids I had read about were getting much better initial correction. But, now I am so glad that we stuck with it, and I just hope that things continue to go well.
I hope this helps you out in some way, good luck to you and your family.

[momw/scoli]

Quick question. Is anyone successfully wearing a spinecor with a double curve both in the 30's? Thanks!
Becky

[gallathea]

Hi Everyone:

It's been a while, but I wanted to post on some recent developments with Annabel. We've been considering the vertebral stapling surgery because of the many years of bracing ahead, so we went down to Philadelphia for a consult with Dr. Betz who developed it. We did our first out-of-brace x-ray since her diagnosis a year ago, and unfortunately her curve has increased from 28 to 37. We've decided to move forward now with the surgery as quickly as possible. I'm sorry to post disappointing news. I don't think this was about the failure of the Spinecor; I think it's about the aggressiveness of this particular curve. Our last check-up in Montreal was in April, and her in-brace correction was stable, so it's possible all of this happened in the past 6 months. When I asked Dr. Rivard if in-brace x-rays would show progression, he said yes, so I have to believe that's what happened.

Thanks for all of your support in the past. I'll be sending all of my good thoughts to you and your kids.

Caroline

[RugbyLaura]

Caroline, I'm so sorry to hear your news. I had such high hopes for Annabel as you caught her curve early. You probably remember that Imogen is really wearing the Spinecor to "hold her curve" until she's grown tall enough to schedule surgery - but we are, of course, hoping for a miracle...

When you say you're going ahead with surgery I assume you're going for vertebral stapling rather than growth rods? We don't have that procedure in the UK but I think it looks like an excellent option and I wish you all the very best.

Laura