spinecor

[WNCmom]

Sharon--

I hope you'll keep us posted on what the geneticist says about your twins. Also, I want to thank you for the fusion surgery synopsis you posted on another thread. It is very helpful to hear from a parent who has been there such a concise and complete description of what to expect.

Mary Ellen

[leigh9p]

Allegra?

Sorry - I can't figure out how to post a new thread so I'm just replying to this one. I used to talk with Allegra, but have not heard from her for awhile and see she hasn't been online since March. I can't send private messages to her because her box is full.

So....Allegra if you are out there? You need to empty some private messages.

And to everyone else...I have not kept up online, but all the same I'd like to update you on my daughter's progress with the Spinecor brace. If you are like me, you read all the kids numbers looking for affirmation that we are doing the best we can for them. if so, you'll like this.

Taylor who is 15 now was dx 8/07 with 28T and 13 L and a riser of 0 to 1.
She was fitted with the Spinecor brace Oct. 07.
In brace she went to 13T; L9
March 08 - T8; 11L - in brace
8/08 out of brace 23T, 8.7L
riser wasn't clear, but he thought she was done growing. She grew about 3 inches this year.
This makes me feel like we absolutely did the right thing.

And for those of you wondering about the 20 hours....Taylor has not been very consistent with that this summer at all. She does, however, sleep in it every night. I would say her avg. wearing time for the summer has been more like 16 hours with large gaps. I just can't make her wear it when it is so hot and she is so busy running around. Also she won't wear it without making sure it is mostly covered which requires more clothes than she'll wear in the summer. She did do the 20 hours during the period when she was growing so much though and I'm sure that made a huge difference.

Thank you all for being there for us!

Leigh

[WNCmom]

Leigh, that's really wonderful news. Thanks for sharing.

Mary Ellen

[jillw]

Leigh, that's good news that her curves were maintained despite 3 inches of growth and that she may be at the homestretch!

Sharon/Maryellen, I"m glad you both got good news re: potential for Marfans. I also found it very educational for myself. I'm going to specifically bring up Marfans/connective tissue disorders at next appointment because many (but not all) remind me of my daughter and/or myself.

[Pooka1]

Been out of pocket; writing this from the road

Maria, Mary Ellen, and Jill, thanks for the good thoughts.

I don't think emergent Marfan's is in the card really but we'll put that to bed with the geneticist visit(s). My girls sure do have many of the skeletal indicators, though.

I asked the cardiologist if he has ever seen a 13.75 year old with all normal heart/aorta measurements and functions to later develop Marfan-associated heart/aorta issues and he said he has seen it.

I'll post the genetics results when I get them. I doubt there will be anything to report after the first visit next week, though. The interesting question for me will be if she takes samples to look for the genes associated with Marfan's. The gene tests aren't dispositive as I understand them so she may not test them without some involvement with some other non-skeletal system. She may just have us return if they develop another problem though the cardiologist said he didn't recommend that they need to be retested unless the genetisict suggests it. I trust that's sufficiently confusing for all reading this!

The cardiologist knows the geneticist and said he would send his report to her. So that's convenient. Hopefully the geneticist will agree with the ped and the surgeon in thinking they do not have Marfan's.

sharon

[sparklegirl59]

i was thinking of switching to the spinecor myself. i go to the doctor in two months. i hate the side effects of the brace. i get acid reflux, heartburn, red marks all over my body, i sweat like crazy, and i CAN'T wear the clothes i want to! if anybody even hugs me they are like, "what is on your back?"
i HATE, HATE, ABSOLUTELY HATE IT! so can anyone feel this brace when they hug you??? the straps, are they noticeable??? i have looked at pics of the brace and have been wondering if you can wear v-necks or tanks. can you only wear shirts that have full necks and full sleeves? (that are short OR long sleeves)
any and all help is much appreciated.
thanx again in advance!

~~val

[emarismom]

Sparklegirl,

You can feel the brace when you hug someone who is wearing it, but it isn't hard. You just feel the straps. There are many different ways the brace is fitted depending on the type of curve and location of the curve in each individual situation. My daughter has a right thoracic curve with an apex of
t-9. With the way she wears her brace, she can't wear v necks or tank tops. The best type of shirts for her are short sleeve polos with a collar. When she wears these, nothing is visible at all.

[sparklegirl59]

thx

thank u for your help emarismom.

[CICI67]

Researching SpineCor

Hi, I am considering a couple of alternatives to rigid bracing for my newly diagnosed 9 year old daughter. One of the alternatives is the SpineCor. Some studies (including those from the makers of the brace) certainly sound very positive. But, I have not seen any discussion of the following cite I found on Scoliosis.com.

This abstract seems to indicate that rather than being perhaps better than rigid bracing, the SpineCor was less effective with this study. I know all studies are subject to being interpreted and misinterpreted, however one wishes.

Nonetheless, while I am very enthused to read all of the positive press and person testimonials about the SpineCor, I am trying to sort it all out and was wondering if anyone else has seen this and has any comments on it. Not trying to cause any trouble pro or con on the SpineCor as I am genuinely hoping that it works since I am STRONGLY considering it for my very active daughter!

Lisa
Newly Diagnosed 9 year old daughter
Looking into alternatives to rigid bracing (VBS? SpineCor?)

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"The Effect of Rigid Versus Flexible Spinal Orthosis on the Clinical Efficacy and Acceptance of the Patients With Adolescent Idiopathic Scoliosis.
Deformity

Spine. 33(12):1360-1365, May 20, 2008.
Wong, Man Sang PhD *; Cheng, Jack C. Y. MD +; Lam, Tsz Ping FRCS(Ed) +; Ng, Bobby K. W. FRCS(Ed) +; Sin, Sai Wing MPhil ++; Lee-Shum, Sandra L. F. PD [S]; Chow, Daniel H. K. PhD *; Tam, Sandra Y. P. BSc(Hons) *
Abstract:
Study Design. A prospective study on the comparison of the clinical efficacy and patient's acceptance of the 2 orthotic management methods.
Objective. To compare the treatment effectiveness and patients' acceptance of the flexible spinal orthosis, SpineCor with that of the rigid spinal orthosis for the patients with moderate adolescent idiopathic scoliosis.
Summary of Background Data. The patients' acceptance to the rigid spinal orthoses is always a concern as it could greatly affect the clinical outcome. SpineCor is a relatively new design for tackling those inevitable drawbacks found in rigid orthosis. However, there was no study to compare this design with the conventional method regarding their treatment efficacy and the patient's acceptance.
Methods. Forty-three subjects with moderate adolescent idiopathic scoliosis were randomly assigned to the SpineCor group (S group, n = 22) and rigid orthosis group (R group, n = 21). Their survival rate in the first 45 months of intervention was studied. The subjects' acceptance to the orthoses was evaluated by a purpose-designed questionnaire, which was administered in the 3rd, 9th, and 18th months of intervention.
Results. In the study period, there were 68% of the subjects in the S group and 95% of the subjects in the R group did not show curve progression. Significant difference (P = 0.046, by Fisher exact test) in failure rate between the 2 subject groups was found although the 2 groups had similar responses to the questionnaire.

Conclusion. The current study showed that the failure rate of the SpineCor was significantly higher than that of the rigid spinal orthosis, and the patients' acceptance to the SpineCor was comparable to the conventional rigid spinal orthosis.

[Pooka1]

If you look on the spinecor page...

http://www.spinecorporation.com/English/index.htm

and click "News," the first item is a rebuttal to this article.

They seem to make some points but it is nearly impossible to asset it independently. And I note the original article was published in a peer-reviewed journal, something the Spinecor inventors haven't done much of to date for whatever reason.

Some things I consider when looking at this situation is why was the rebuttal published only on the Spincor website and not in the journal? Maybe the journal doesn't publish rebuttals but maybe they do and did not accept this rebuttal for some reason.

Good luck in your research.

[CICI67]

Thanks, Pooka1.

I had not seen that response from the SpineCor founders, but assumed something had been said about this study before.

As I investigate SpineCor further, I will certainly be asking lots of questions of any distributors about training, experience, number of patients they have maintained, etc. Seems like maintenance, monitoring, proper wear, etc. is very critical with this type of brace.

Lisa

[jillw]

Lisa, thanks for posting that study - i don't always catch the newest relevent studies out there and Sharon, thanks for pointing us to spinecor's rebuttal.

I believe the company supplying spinecor is separate from the inventors (although I assume that Dr. Rivard/Coillard may still have a monetary interest)? Anyway, we go for a checkup in a month and I'll be curious to see what they say. I thought the rebuttal had some seemingly valid points. On the other hand I found some of their rebuttals curious...for example, I know that some people on this board do not use the spinecor bodysuit - have your doctors ever told you that the spinecor bodysuit was essential to successful treatment? My daughter does wear the bodysuit so it hasn't come up, but I'm curious because that point seemed to be grasping at straws. I'm not sure Dr. Rivard and Coillard would agree with every single point in the rebuttal although they would agree on the bigger issue of specialized training being required.

Also curious, the rebuttal says that the thigh bands need to be replaced every year and elastic bands with more frequency than I thought was being done - so although I have to wait until early oct Iwill ask Dr. Rivard what his thoughts are on the initial study as well as some of the points in the rebuttal related to replacement parts that aren't necessarily in sync with what I thought the practice in montreal was (but don't know since we haven't been a year with the brace yet).
The skeptical part of me things that maybe spinecor corporation tries to push the replacment parts more (for monetary reasons) than the inventors, Rivard and Coillard, who are in the trenches daily and who have more day to day experience. Just speculation.....

It's a shame that study wasn't better organized because it would be interesting to see the results...

[MJB]

Changes....

I noticed this week that one of Halle's shoulder blades seem to protrude more than the other now, it is the side that she always had the rib hump on... Her shoulders are also looking more uneven lately when she is out of her brace.

She has been experiencing some back pain in the past couple days, especially during her out of brace time, so she ends up wanting to put her brace back on before her time is up.

Also one last thing, her spine is looking much straighter however when she bends over and I see her spine, where her curve is I can't see her spine through her skin but above it and below it I see the vertebrae showing.... should I be concerned?

[emarismom]

I would call Dr. Rivard and let him know what you are seeing, and ask his opinion. Maybe you will need to take her in a little sooner, just to check it out. All of Emily's doctors have always told me to come in whenever I start to notice changes. You could also email him some pictures.

When Emily initially started weaing the brace, there was a time frame where I think she actually preferred to have the brace on too (Not anymore). I think that in the brace she *knew she was or felt she was* straighter. The brace definitely helped her posture to appear better.


I can't always see Emily's spine either. I try to run my finger along where it appears it would be (when she is bent over), to try and determine if the curve is changing. Regardless, of what I think the curve is doing, when we go to get the xrays, my predictions are often wrong. Unless, there is a drastic change, I don't think we can actually see it. Especially when we are looking at the child everyday.

[MJB]

Thank you! I am going to e-mail him this week and ask him. I just can't understand why I can't see her spine where her curve is and with how defined her spine is everywhere else because she is so skinny, it worries me. I try to run my finger down her back but when I get to the area of her curve my finger doesn't know where to go, i can't feel her spine.