spinecor

[MATJESNIC]

Gerbo,
Thanks for all those details of the appt. Thanks for giving me a laugh about the bondage outfit. They do know too much at their young age. You are right that the only part of the brace to cause a little irritation is the thight and crotch snaps. We have never done anything about it. Nicole just deals with it. Did you get bodysuits. We have discussed those in great length on previous posts. Nicole wore her brace the full 22 hours by the 2nd day, I think. Unlike hard braces, there is really not anything to get used to.
She wears all of her regular blue jeans and shirts over her brace.
Please let me know if your daughter wants to talk privately with my daughter. She has been in it now for 4 months and could give any advice on things such as going to the bathroom. They could e-mail. Anyway, lots of luck. Thanks so much for sharing your story. We have all come up with strategies for washing the brace, as well, so feel free to ask any of us. Take care.
Melissa

[Celia]

Initial impressions; yes it feels much more comfortable, although I am a bit worried about the bands around the groin area and how much irritation they might cause, Louise already ordered some cycling shorts to deal with that (moles are a protected species here, so cannot use their skin

Gerbo,

You do have a way with words ! I've seen pictures of the spinecor with cycling shorts, but I'm not sure how that would work ?? Would you not have to remove the entire brace when going to the bathroom ? In that SRS presentation, Dr. Rivard did mention that they are working on a different pelvic base, but I don't see how they could anchor and hold the plastic section in place without the crotch and thigh bands ? Anyhoo...I don't care what it looks like, if it works that's the important thing. Interesting that moles are a protected species in England ! LOL

[gerbo]

Did you get bodysuits.

got three, cannot see much advantage to them, not much different than normal ballet outfit, she has her way of dealing with toiletting in them without having to take them off

Nicole wore her brace the full 22 hours by the 2nd day, I think.

We would have done the same, but the orthotist suggested the slower introduction, and she, getting every bit of freedom out of it, keeps very strict to his advice. By the way, we were advised 20 hours/ day

Please let me know if your daughter wants to talk privately with my daughter.

will ask her and send a private note with her email address if she fancies the idea, thanks

We have all come up with strategies for washing the brace,

We were told to put in washing machine in two separate pillowcases once a week on delicates cycle (i did understand all that, not bad for a man!?) Including drying it is going to take longer than 4 hours, which suits her very much as saturday is going to be washday, which means that she will be able to her special balletclasses on saturday pm, without even having to think about the brace

gerbo

[gerbo]

I've seen pictures of the spinecor with cycling shorts, but I'm not sure how that would work ?? Would you not have to remove the entire brace when going to the bathroom ?

I would think you'd manage it by just undoing the 4 lower straps

Interesting that moles are a protected species in England !

I have to admit, I made that up

gerbo

[MATJESNIC]

Gerbo,
You are right. Ideally, it is supposed to be worn 20 hours a day with a 2-hour break in the morning and a 2 hour break at night. But never a 4-hour break all at once. Most children cannot find the time in the morning to take the break because they are getting ready for school. We were told we could just take one break sometime during the day or night. Are they telling you that you can put the entire bottom brace in a pillowcase in the washer and dryer? I would absolutely love to do it, but I am afraid to. Nobody told me I could and I am scared that I will ruin it. I throw the top in once a week because our dr. said the dryer is actually good for the bands.
I have just been wiping the bottom brace down with soap and water (or using wipes in between these wipe-downs).
Nicole's brace is already looking worn and it has only been 4 months. Our doctor gave us replacement crotch straps twice so far. Our thigh bands are looking pretty beat. He said next time we will have to purchase some replacement top bands.
Lots of luck!
Melissa

[cyprusmom]

Gerbo,
welcome "officially" to the spinecor moms and dads club!

Just wanted to tell you that my daughter always wears cycling shorts with a short sleeve tight shirt under the brace and she has found her way of dealing with toilet visits...Lisanna will find what suits her best, have her try it only with the body suits and /or shorts too.

Also, why is your next visit not until 3 months from now? I am pretty sure the protocol says every month for the first 3.

20 hours a day but the 4-hour break never in one strech is what we (try) to do.

I am sure all will be well
( Please remind me what age is your daughter...)

Pola

[BlueCrystalMan]

Greetings all... been lurking in the forum for a few weeks and have finally decided to post. I've been reading with interest all of your experiences, as my son was just diagnosed with scoliosis... 24 degrees and 21 in the lumbar. Needless to say, at 12 years old he was devastated to learn he would need the hard brace. He is very aware of appearances and it would just kill him to have to wear it. Naturally, I hit the web and found SpineCor and Dr. Deutchman. We went into NYC to speak with him (two hour drive) and I was sold when I left. I wanted to do more research however and thats when I found you guys...

Needless to say, after reading and researching, the following week I took my son back to get fitted for the brace. The first few hours were difficult for him because of the tightness of the brace (he's a very loose clothing type of fella), but now, after wearing it for a week, he doesn't even know its on most of the time. Only issue is the crotch straps... kind of restrictive for a male, but he says he's gotten used to even them.

The best news was when he first put the brace on and re-xrayed him... the top curve decreased by five degrees to 19! So we're very hopeful between the brace and the exercises that he will be 'straightened out' over the next year and a half to two years. Its not an exact science (yet), but everything we've heard and read makes total sense.

My only concern is the insurance battle that is coming up... but thats minor. In short, I'm thrilled with the progress my son is making, and even more thrilled with the service the doctors have provided. They even drop everything to get on the phone with me should I have a concern...

Thanks for all the advice 'behind the scenes'... you're all a terrific group.

[Celia]

BlueCrystalMan,

Welcome to the group ! Melissa also sees Dr Deutchman in New York. I'm glad to hear your son is adjusting well to the brace...and 19 degrees is FANTASTIC !!!!! It's great to have a support system where others are going through the same thing.




celia

[gerbo]

welcome "officially" to the spinecor moms and dads club!

Thank you kindly

Just wanted to tell you that my daughter always wears cycling shorts with a short sleeve tight shirt under the brace

We tried cycling shorts today, quite succesful I believe, toilet seeks solvable

Also, why is your next visit not until 3 months from now? I am pretty sure the protocol says every month for the first 3.

it is actually one month from now with orthotist and no x-ray and 3 months from now with orthotist and with an x-ray

20 hours a day but the 4-hour break never in one strech is what we (try) to do.

I am sure that our orthotist wasn't too bothered about how long we'd have it of in one stretch, was keen to have 2 re-applications daily to ensure continued best fit. Will check this with him next time though

( Please remind me what age is your daughter...)

, she'll be 12 next week (1/2)

Are you from turkish or greek cyprus?? (or would yoou say you're from cyprus cyprus)

best wishes

gerbo

[gerbo]

bluechrystalman (i do not really like these internet names, though lots of people seem to use them) suggests you're a dad, which would mean i am not the only, lonely, token spinecordad anymore. Thanks for joining and welcome. Hope so much things will work out for you and your son. Sometimes I just would like to skip the next two years to know whether this is working for us. I think i am kind of confident, though this varies from day to day, more confident though than when we were hardbracing, and it is so, so much more comfortable to daughter

gerbo

[MATJESNIC]

Welcome to the Spinecor Gang! I hope your son does well with the brace.
We go to Dr. Deutchman, too. He always takes the time to answer any questions. He's also great with the kids. Good luck
Melissa

[LATigner]

SpineCor user in California

I've been reading posts on this forum for a couple of years now but never registered. My daughter who is 15 now (10th grade) was diagnosed with scoliosis at age 12 and 1/2 (7th grade). Her curves were about 32 and 38. After much research we decided not to go with the traditional brace but chose the Copes program which she followed fairly faithfully for about 2 years. Initial results were good, curves down to 14 and 26. Over the next couple of years they went up and down and he got stranger and more objectionable to work with. When my daughter entered high school she refused to wear any brace to school and just wore the hard brace at night. We saw Copes last spring and decided that his program was not worth continuing. My daughter weaned out of the brace and worked consistently with a wonderful doctor in Tustin. He has been treating her all along.

She essentially wore no brace for about 3 months & we were hoping that the curves had at least stabilized but the problem with wearing a hard brace for any amount of time is that the muscles atrophy & can't support the correction you receive from the brace. I began looking into the SpineCor system last summer & by fall had decided it was worth a try. We went to Dr. Ron Marinaro in Studio City (he is affiliated with Dr. Deutchmann in New York) in October. Her curves had gone up to 36 and 42 - very scary. At her one month check-up they were down 10 degrees to about 26 and 32. We are encouraged but it is difficult because she will only wear the brace when she's at home so she averages 8-12 hours a day rather than 20. She goes for her first 3 month check next month. The SpineCor is comfortable but the crotch straps are annoying to her.

During the past 2 1/2 years she has grown almost 6 inches from 5'1" to 5'7". Both doctors agree that to keep the curves pretty much the same with that rapid growth is a victory in this crazy disease.

Thanks for all the insights.

[Celia]

LATigner,

Welcome to the group ! Wow, you've been through a lot ! I haven't come across too many people who have tried Copes and the little that I have read, is pretty disappointing. Do you know what risser sign your daugther is ? I was just wondering whether your daughter has much growth left, did they say ?


celia

[LATigner]

SpineCor & Risser

Thanks for the welcome. My daughter is a Risser sign 4. I don't think she will grow much more but the doctor explained to us that until the growth plate is closed (5) and in the teenage years their bodies are in growth mode, hormonally, etc. He feels there is still opportunity for correction and since it was going the other way doing nothing, we wanted to try every option.

Her doctor in Tustin (Dr.Gorrie) has 2 other patients that recently started the SpineCor program. Both have severe curves, one is 19 and the other I think about 30 years old. I know the older patient personally and she has gotten relief from terrible migraine headaches since she started wearing the brace. Of course for these two, it is more about control and stabilization then a lot of correction.

We also took our daughter to New Jersey the summer after she was diagnosed and did ASCO. She did the treatment in the day time and just wore her Copes brace at night. I don't think it did much for her but there has been a lot of research into vibration. Dr. Gorrie uses a Power Plate for his patients (there is a website) as part of the therapy.

Our biggest frusration is getting our daughter to wear the brace - she did so much with Copes that mentally, I think she is done. And of course has the typically teenage mentality of "nothing bad will happen to me". I haven't told her about any of the forums because I don't want her to decide surgery would be a "quick" fix. Our goal is to prevent it if at all possible.

[gerbo]

So Pola, I suppose everybody on cyprus always knew that Marcos Bagdathias was going to make it big one day (and all remember him as a little boy going to the villageshop.......) Is everybody very excited?

We have been struggling a bit at night with the left side of the pelvis base causing quite a bit of discomfort and numbness on the left side of the pelvis (just under the ridge) Wonder whether the (back) plastic anchorpoint is too much forward. Where is it exactly meaned to sit, in daughter case the most lateral edge definitely has "taken the corner" and comes to about half way the site.(left and right i.e. symmetrical) Should it stay on the back only? Do I make myself clear? (it is like trying to describe the mona lisa texting, (what am I on about now....????)) right site isn't an issue, but that would be because most tension is in the left

gerbo