spinecor

[rtremb]

Sherie: I think the fusionless surgery is the multiple vertebral wedge osteotomy surgery. I don't think the doctors know the long-term outlook for this surgery since it has only been done for about eight years now. I am not 100% sure this is what Dr. Rivard is referring to but we will ask him when we go back for the Spinecor brace. Much as I don't like the idea of fusion surgery we are wary of letting any surgery be done on Esme which is still experimental.

Celia: Esme's structural curve is thoracic. She has a compensatory lumbar curve. We found the torso rotation on the web and we are interested but so far the nearest facility with equipment (we have found) is in Toronto (5 hour drive from Ottawa).

We are going to Peterborough on Wednesday to see a chiropractor about some intensive treatments for Esme. Don't know if it will amount to much but we thought we'd go and see what he has to say.......

[cherylplinder]

I will be really interested to hear what he has to say! Thanks everyone!

[BETall]

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

You have more options in Europe . Please go to www.Sosort.org
scoliosistreatment-schroth.com
scoliosisxpert.com
scoliosisjournal.com

[Celia]

Hi Betall,

I see the benefits of Schroth and the Cheneau brace however it's not something that's readily available to people here in North America unless they are willing to take an international flight to Spain or Germany. Ruth lives in a rural town in Southern Ontario and cannot do a transcontinental flight half way across the globe for regular treatments.

[gerbo]

also, despite that principles of schroth and cheneau look good, there are no convincing looking outcome studies which show a clear benefit compared to non-treatment (as far as I know), in any case, to both would apply, the treatment will be as good as the practitioner giving it, like anywhere else, there will be good cheneaubraces and bad cheneau braces, there will be good schroth therapists and bad ones and in the end, it might not make any bit of difference to the eventual outcome

[Celia]

Gerbo,

I don't know if you have seen this article or not, but the results look pretty good.

http://www.pubmedcentral.nih.gov/art...medid=16872503

[gerbo]

but the results look pretty good

??????

After a treatment time of 27 Month the Cobb angle increased to 74° thoracic and 65° lumbar

am i missing something??

[Celia]

Yes....did you read the entire article? Refer to figure 5

[gerbo]

During clinical follow-up we were quite satisfied with the cosmetic improvements achieved although the initial Cobb angle was very high and after the follow-up x-ray we were quite surprised that the curve was progressive.

i am confused, figure 5 suggests an improvement in cobb angle, whilst the rest of the article talks about cosmetic improvement despite a radiographic deterioration, ???

[Celia]

We are reading the same article, are we not? The whole article is about a patient with early onset scoliosis who started treatment at the age of 13 and her curve was 60 degrees. She refused surgery but was happy with the cosmetic results at the end of treatment even though her curve progressed. I think they were trying to establish why cosmetically she improved but had a radiological progression of the curve. They also made the following point:

...the Rigo-Chêneau brace is able to improve cosmetic appearance by changing the shape of the thorax when the curve itself is too stiff to be corrected by a brace, while in curvatures of less than 60° with enough residual flexibility cosmetic improvements come along with improvements of the Cobb-angle (Fig. 5 and 6)

[jillw]

advice for spinecor/trip to montreal

Hello Everybody,

We will be driving to Montreal next week to meet with Dr. Rivard and potentially get the Spinecor brace for my daughter. I have thoroughly read this thread although it was in the course of a few all-nighters when we first got the news so I don't remember all the details. Having said that, I do remember that some of you experienced difficulties with broken parts (snaps?) and was wondering if any of you had advice:

-if we get the brace, it sounds like it would make sense to order some extra parts up front to potentially avoid a stressful situation later. Should I be asking to buy certain extra parts and if so which ones???? (i.e. was it a particular snap or are the snaps the same throughout the brace) bands? anything?

-I have read that there are special undergarments people wear with the brace. Do they sell these bodysuits in Montreal t get us started or should I be going online to order in advance, just in case (and if so, where would you suggest going online)?

-Any suggestions for a convenient hotel to stay in? Either something close to the hospital or something that's over the NY /Canada border but maybe still a bit south of Montreal? Our appointment is early so we have to go the night before.

I had other questions, but I forget now what they were. I think these things have been covered before and I apologize for asking again. I was trying to find some of the info in old posts, but think I've missed many of the posts. Thanks in advance if anyone has any suggestions!!!

p.s. out of curiousity, I read that Johns Hopkins utilizes Spinecor also. Does anyone know the name of the doctor/s there that do it and does anyone have experience with them?

Jill

[RugbyLaura]

Hi Jill,

I haven't any answers to your questions as 1) we live in England and 2) nothing on Imogen's brace has broken (yet!). Just wanted to say "Good luck" with Katie's appointment and have a great time in Montreal!

Laura

[christine2]

Hi Jill
i think your daughter is a good canidate for spinecor. She is young and you caught the curve small. We have only had 1 snap problem so far and a local shoe repair was able to fix it.

Body suits
My daughter will only wear the spincor bodysuits. I have had a very hard time in that area. I can't find anything to fit her. So we go with the spinecor they are $60. a pop. You will get 1 or 2 bodysuits at the visit. You may want to pick up an extra while there it takes a while to receive them from Montreal if you call in to order them.
I am working with bodysuit.com to come up with a new designs for our small kids. The project is on hold right now but I hope to get going on it again soon.

We stay in Plattsburg NY there are a ton of hotels and resturants right off the highway. It only takes about 1 hour from there to the hospital. AM rush hour is bad so give yourself some x tra time.
Don't forget birth cert/or passports for the border.
We get x rays on a disk before we leave each time. I then make copys and send them to our docs here.

Don't forget receipts for insurance (I did once what a PAIN IN THE BEHIND)
I also keep a small notebook. Everything goes in there docs #'s, ?'s

Good luck

[Celia]

Hi Jill,

I agree with Christine, it's wonderful that you caught the curves so early! Whenever we go to Montreal, I get an extra set of straps. Dr Coillard gives me a dirty look and I'm sure doesn't like it but hey I'm the one that has to live with the brace and snap mishaps. I don't know how much an extra bolero costs but I'd really like to have an extra one lying around so that Deirdre doesn't wear the same one for an entire week. I'm planning to ask her about that next time we're there. What we've done recently is remove the brace from the velcro side rather than the snap side and this saves on snap wear and tear.

If you plan to stay in Montreal for a few days, there are a few hotels that come with fully equipped kitchens and this really helps! Here is a website of hotels with kitchenettes:

http://montreal.biz-stay.com/home.cfm

[desheah]

jill,

i don't want to jinx myself here, but we have not had any problems with the snaps (knock on wood!) instead since lucas is so small when he got the brace (4 1/2 yrs old and now almost 6), the velcro straps on the pelvic base would always loosen and eventually pop open. my husband and i rigged up a strap with a buckle like this directly onto the pelvic base straps:

http://www.rei.com/product/709043

so that we didn't have to worry about the velcro loosening and then the base sliding around. of course, lucas is a boy so he doesn't have to take any thing off to go to the bathroom. that has been a major plus with regards to this brace. i know the others with girls would have tips about that.

good luck!

deshea