spinecor

[Mom37]

Hi everyone,

I haven't posted on this thread yet, but have been following for a few weeks (Hi Cheryl). My daughters curves are 34T/45L and has been in the Spinecor brace for about 6 weeks now. There was only a 2deg correction in brace at both the initial fitting and 1 month eval. We live in Texas and are seeing someone here local to us. I spoke with Dr. Couillard yesterday and she said these are the results that she would expect with a 45 curve, that it's already rigid and very hard to correct.

My question is this, has anyone here had better results in the Spinecor with a larger curve like my daughters? We are most likely going to Montreal to get a second opinion from them despite the fact that she wasn't optimistic about being able to correct it more.

Thanks for any replies,
Sherie

Sherie,
We live in Arlington, TX. My daughter went to NYC for initial bracing, and we visited CA, as Andrew Mills, head of Spinecor, fitting for final training at Dr. Gorries office. My daughter was at 38 degrees per Dr. D in NYC before brace at initial bracing. Never had supine, or lateral bending xrays done. Per above post, we were concerned with little correction on initial, but OK with Dr. D. Real pleased with second opinion of bracing with Andrew Mills at 1 month 10 degree in brace lower at 28 than 38 out of brace a month before. Felt it wise to seek Orthopedic who knows Spinecor. We are going to Shriners in Erie, PA on June 15th. I called Erie directly and said I wanted second opinion. We have an appointment, but they said if we hadn't, that many patients far away can send in Dr.'s info and Xrays for opinion to possibly avoid trip or see if needed. Did you visit Drs. Smouse? I have had other options, but planned on using them in Houston until these other opportunities came. I may still follow up there since it is the closest to me, about 4-6 hours. I am just checking Shriner's first due to expense as well. Shirley

[Mom37]

if you need to convince the docs you just have to quote the published evidence, comparing what is known about hardbracing (at best it will hold at current level and even that is not garanteed)to what is known about the spinecor.(something like 90% stabilise or improve with improvement being much more permanent) For the latter you will need to quote the article which was published in "Spine" 2003 and which is available on the spinecorporation website.

i would quote that your daughter was not able to tolerate hardbracing (whether true or not) and that with a hard brace not worn as much as advised it was never going to work anyway. She can tolerate this one and wears it as prescribed increasing her chance of succes (and avoiding expensive surgery)

If you know the figures you could try to compare the cost of hardbracing with a new brace every year with the once off cost of a spinecor with the occasional replacement part.

I'll bet "all together" we'd be able to put together a outline letter which everybody who needs to could use for this purpose.

Once you put something together feel free to post it or sent me copy by email so we can help you to improve it.

gerbo

and now, get off that computer, pack your bags and aligator traps and off to disney land! Enjoy, relax, laugh, forget all your troubles and be happy!!

Thanks for the advice and question. I too want to get in network, but I did get out of network paid to me. Shirley

[Mom37]

Bodysuit

I have tried talking to her about going w/o the bodysuit, and she just says it'll hurt too much. I think I'll work on her a little more; it makes sense if you can go w/o it! Thanks p

Lori's teenager doesn't use one, but my 12 year old doesn't want without either. We have been trying camisoles of different fabrics, but she likes the small sleeve to go under her arm, under the strap, and the trees to line up the brace too. Dr. Deutchman in NY had them for 30.00 for extra. One was with the brace. I think my insurance denied and has not yet reimbursed for it. We have 2 but would like more also. We are trying other options for sleeveless clothes, but like the v neck on the Spinecor bodysuites and to help with the crothstraps comfort as another bonus to my child. Shirley

[Mom37]

hey ppl..long time no posting lol...been so busy didn't have time to drop by lately...
just thought i'd chime in on couple of posts

for flexibility tests, it doesn't matter if you do supine(actually that's the worst) prone, lateral bending, or some actually let you hang onto a bar and let the gravity pull you down...as long as it stresses the spine it's all good...

I saw someone mentioning Dr in texas...I'm guessing it's Dr. Smouse...
I've spoken to him as well and he seemed very knowledgeable in the subject of scoliosis...very nice guy...I believe he's the only one doing spinecor in texas...he teaches other docs how to manage scoliosis..

anyway I gotta jet...don't have much time for forum these days...g'day all...

We haven't gotten any of those tests or xrays for rigidity and flexiblity. Do you recommend I ask at Shriners? Andrew Mills mentioned her shoulder tight, and Dr. Gorrie mentioned getting some chiropractic here if there is someone familiar with Scoliosis treatment locally, but I haven't reasearched it yet.

[Celia]

Ailea,

I wouldn't take a Caribbean trip right now, last week was the official kick off of hurricane season in that area.


What ever happened to Gerbo ????

[AILEA]

Celia,

I know that now it´s not the best season if you want a Caribbean trip,...In fact we´ve been planning it since january; we´ve postponed it, until next winter.
I was also asking myself where Gerbo is; I hope it has something to do with the beginning of the European football championship...

[meagain]

bracing

Hi everyone: I am posting for the second time only but feel familiar with this cast of characters

My daughter Olivia is at about a 45 degree curve, appears flexible, ortho says she is done growing at 13, but just started her cycle. The ortho in Seattle recommended a hard brace.

We have gone to several chiropractic and physical therapy appts. since finding the curve 2 months ago.

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.

Olivia's grandpa referred her to Shriner's in Portland. Is Sander's in Erie the only qualified Spinecor provider with the Shriner's? How should I proceed? Thank you for any ideas- Megan

[desheah]

hi megan,

if you go here: http://www.spinecorporation.com/Engl...enters/USA.htm it shows a list of places that offer the spinecor. i didn't see any listed in washington state. also, i didn't see any other shriners listed. sorry!

deshea

[LATigner]

I'm not a doctor so can only speak from personal experience. My daughter just turned 16 and has two curves in the 45-48 degree range. She wore a hard brace for about 2 years, curves progressed 8-10 degrees. She got a SpineCor brace last October and in the brace the curves reduced about 10 degrees. When we met with Andrew Mills, head of SpineCor, he said we cannot hope for a tremendous amount of correction due to her Risser of 4, and almost 2 years since she started her period but we can get some correction, some derotation, better posture and stabilization of the curve - all of these things hopefully keeping surgery out of the picture. My understanding is that girls can grow for about 2 years after they start their period.

A hard brace is a miserable experience and most teenagers are not very compliant with the 23 hours prescribed. In addition they weaken the muscles and do nothing to help correct posture or retrain the soft tissues to hold a correct position. It's strange they want to prescribe one if they think she is almost done growing. It's my opinion that you would get more out of SpineCor. We have a wonderful doctor here in So.Ca. that fits the brace. I think the Erie Shriners is the only Shriner facility that does it. I'd be happy talk to you in person if you want to see me a private e-mail with your phone number.

[gerbo]

I thought of you, Gerbo, when we saw England. I heard a lot of lovely English accents in Disney. Nicole and I love those accents. I know, Gerbo, you are thinking that I'm the one with the accent.

its getting worse, first everybody thinks i am a mother and now i am being labelled as a british person, am i loosing my identity??

for the record I am through and through and truly dutch (that is; i was born in a small country called the netherlands, for those amongs you who are geopraphically challenged, this is located between the england, germany and france (well, it is belgium really, but can i expect any inhabitant of the american continent to have heard of belgium??)

so, when i talk english, i speak it with a dutch accent and a slightly irish intonation (blame it on my father in law)

(and when i speak dutch i speak it with an anglo-irish accent as well)

[gerbo]

What ever happened to Gerbo ????

i am being missed , how absolutely lovely!

I was also asking myself where Gerbo is; I hope it has something to do with the beginning of the European football championship...

no, sorry for not asking for forum permission , we went over last week to holland (=the netherlands)for a week of holiday , visiting family, old friends, lots of cycling, swimming and a few rollercoasters. Similarly to melissa's experience, and in contrast to last year when she wore the hardplastic tslo on a similar trip, lisanna coped very well, could do most activities with the spinecor on and was so much more a normal and happy person.

we had a great time!

[gerbo]

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.

at 13 just having started her periods, she should have had her main growth spurt, but still should have a couple of years of slower growth to go

at 45 degree i cannot see how a hardbrace is going to make any difference and inevitably she is going to get at a level where surgery will be required (which isn't necessarily the disaster people sometimes make it out to be, usually excellent result with a "normal" quality of life after) In any case, with the prospect of succes min imal, nhow are you going to convince your daughter to wear the damned thing for 20 hours+ in the first place, she'll hate it terribly, and it will for the time she is wearing it, reduce the quality of her life.

More succes with spinecor?? Not particularly likely, but you can try, and at least it will be bearable and wearable. I think you might as well try it, you have nothing to loose i think

gerbo

[cherylplinder]

Gerbo,
I missed you, too! I was getting worried. You can travel without our permission. On the other hand, let us know so we won't worry our feeble brains. You didn't know we cared so much, did you?

Most of our on line friends are multilingual!I feel so inadequate. I am also geographically challenged, although I did know where Belgium was! But please describe any and all geographical locations in detail.( It's O.K., so far I know where Cyprus, Spain, the U.S. and Canada are, also!)

American schools do a terrible job with foreign languages and geography.

I am a science major, so I am better at that! I love math, too!

[Mom37]

Shriners in Erie, PA using Spinecor

Hi everyone: I am posting for the second time only but feel familiar with this cast of characters

My daughter Olivia is at about a 45 degree curve, appears flexible, ortho says she is done growing at 13, but just started her cycle. The ortho in Seattle recommended a hard brace.

We have gone to several chiropractic and physical therapy appts. since finding the curve 2 months ago.

I really want to get on the spinecor program-but wondering if it's just wishful thinking that it will make a difference.

Olivia's grandpa referred her to Shriner's in Portland. Is Sander's in Erie the only qualified Spinecor provider with the Shriner's? How should I proceed? Thank you for any ideas- Megan

Yes the Erie, PA location is the only Shriner's that is a Spinecor provider, I understand. I called them directly at 814-875-8700 and are going there June 15th. My daughter will have had Spinecor brace for 3 months next week. We are going as a second opinion and 3 month "adjustment". We have been told Dr. Sanders is not bias to one brace or another. If you have a local chapter or Hospital then I'd call them and just inquire if the have Spinecor or if they can help sponsor you. I was told by another forum member that may be possible to defer travel expense but it takes longer. We got an appointment date set up within a week from initial contact for 3 weeks from that time. I think it is smart to go if you can. The cost, even with good insurance can add up over time. Best wishes to you and yours. Shirley

[Celia]

i am being missed , how absolutely lovely!

Yes, we did miss you Gerbo *wipes a tear*