spinecor

[RugbyLaura]

Thank you Celia, I'm obviously far too lazy to read it myself Actually it's more like I have trouble following the manual Thank goodness I have you to pick out the pertinent points! Anyway, armed with that info I shall certainly be looking for answers from Mr Mills next week. Will let you know what he says.

Laura

[Allegra]

hey everyone...

I can officially post here because i have a spinecor!
i know all of you had a discussion on the straps already, but has anyone had problems with strap #4 slipping?
its not a real problem yet, i was just wondering. its pretty irritating too.
but i know Melissa mentioned moleskin hahaha.

[RugbyLaura]

Hi Allegra & welcome!

Had Immy's 3 month review today. All good news! The severe shoulder tilt was caused by her having grown so much. There is supposed to be a slight shoulder tilt (in her case) but he has loosened it off at it was causing too much (over) correction. Added a new (!) band, called 1A, to hold her ribs from bulging to the left. Rotation stats looked good - slightly improved on last time. Thoracic from 8 deg to 6 deg and lumbar remained at 0. Who knows what the curve is doing, but we'll find out at the next xrays in December. Mr Mills said she is entering the most critical year as her growth is really taking off now.

Sorry this is a bit rushed & probably rather garbled!!

Laura x

[WNCmom]

3 weeks to SpineCor

I'm new to this forum but have read though all the posts on this thread over the last few weeks, and it has been a huge help.

My son Sidney (12 yrs; Risser 0; hasn't hit is main growth spurt yet) has a right thoracic curve of 40, complensating lumbar curve of 24. He has just ditched the Boston brace, which he wore for 6 months (during which his curve progressed about 5 degrees), to prepare for a SpineCor brace, which he'll get in 3 weeks. We realize the odds are against avoiding surgery, but we're going for it.

We will be seeing Dr Ouellette in Atlanta for the brace, and I'd love to hear how Georgiamom is doing, and also from BlueCrystalMan, who I think has a son near my age.

Also, looking ahead, does anyone have experience with UNC Hospital in Chapel Hill as a surgery venue?

[leigh9p]

We got it.

Taylor got her brace on Thurs. with Dr. Marinaro in San Francisco. She hates it. Can't say as I blame her - she looks like a mummy all wrapped up in it. Her clothes don't fit over it very well either. But, we are only on day 1 of wearing it. I know it will get easier/better. I walked in the door tonight and she was in tears and said - I'm not wearing this - please get me the night brace. I tried to tell her about those of you who I've read did not like the night brace and then of course the studies show it was not nearly as effective as Spinecor. Not to mention, I just plunked down $4500 on it! So then she started trying to negotiate less wearing time ;-) I said, let's just take it one day at a time - right now is 4 hours this week, then 8, 12, 16 and 20. So really, we have 3 more weeks before she would have to wear it at school.

She was so strong and brave while he was fitting her, but once we got in the car, it all came out. My heart breaks for her. I know there are worse things, but right now it's just hard. She told me how stressed she is with highschool. tons of homework, diabetes and now this.

Also, she is refusing to wear anything under it, so her skin was all dimpled from it. She won't talk to any of your kids or other kids either. Guess I just wanted to vent, but if any of you have any words of wisdom, please do share.

I guess one thing I wanted to ask is was she supposed to be so twisted with it on? To correct the lumbar rotation, it pulls her the opposite direction so she stands in it twisted. he said as her muscles strenghten and the bands give, she will slowly come back to a normal straight position. Did any of you experience this and how long did it take?

[rtremb]

We tried the night brace (two different ones) - they were very uncomfortable for my daughter and hot. They made her arm go numb and sleep was impossible!! The night braces are bending braces so they hold the body at a very odd angle. Any brace is probably a real challenge to wear for most children but the Spinecor seems like an easier brace to wear in that they can still bend over and stretch. Our daughter is very excited to be going to see Dr. Rivard next week to (hopefully) get a Spinecor brace since she absolutely hated the night braces and doesn't want to wear a day brace since she is aware that she can lose her muscle strength if she wears a day brace.

From your posts it sounds like your daughter is only recently diagnosed so she hasn't had a lot of time to get used to this whole subject so the idea of bracing is probably overwhelming for her. I hope you can work things out with the Spinecor since I think the alternatives are much worse!

If she'd like to chat with my daughter she is on SpineKids and I could ask her to write a note to her?

Ruth Tremblay, Ottawa

[cherylplinder]

You will see her straighten, according to theory. The first few weeks were an adjusment for Rachel, she had rubbing at her legs and under her arm and at her neck. Her curve is thoracic though and her pressure points are different. She was a lot straighter after the first month.

Check out the manual and you will see some of the logic. Let me see where I have that web page stored.

If anyone else has ready access to it, post it

I found it.


http://www.srs.org/professionals/bra.../section13.pdf

[momw/scoli]

Good news/bad news

I'm sorry to hear Taylor is having a hard time adjusting. I was that same teenager back in 1981 with a boston brace. I think that is why I can't seem to make my daughter wear her boston brace to school. It will get better. She will quit growing and hopefully avoid surgery.
Emily my 12 year old and Callie my 9 year old had their appointment in Houston yesterday. The really good news is so far Callie does not have scoli.YEAH!! He said we should have her checked every four months because of family history. The other good news was Emily's top and bottom curve were both a little better than they were in July. He also said her pelvic bones are finished growing and her head is centered in the middle of her body. He thinks she has about 18 months of growth left. The bad news was Dr. Marco told me the spinecor works better on curves in the 20's and on children
that only have a top curve. He also said there haven't been any studies on children who go from a hard brace like the boston to a spinecor. A different Dr. was out of town and is going to look at Emily's x-rays to see if she could wear a spinecor. He also said if our insurance won't pay for spinecor it would be better to go to Canada. I guess that the brace is not as expensive in Canada plus that is where it was invented.
As of today, the plan for Emily is to stay in the boston brace, wear it as much as she can stand it, and pray her curves stabilize. She is supposed to keep it on after school, but I caught her today with it off. She was hanging out with her friends doing gymnastics and she finally learned her round-off back handspring. What's a mom to do? Duck tape the brace to her body?
All I could say was congratulations, get your brace back on now!

Becky
Married to Scott. Mom to Brandon 15, Emily 12 T36 L32, and Callie 9

[Celia]

Laura,

I'm glad things look better and hopefully we'll see improvement.

This is quite a unique situation as we try to learn from each other's successes and failures. Mistakes are hopefully not repeated as we are dealing with human lives - our own precious children. This month marks our two year anniversary in the spinecor brace and a cure is somewhat elusive - things seem a bit uncertain as we now deal with a curve that's developing in the neck area due entirely to a shoulder tilt which is not even recommended for Deirdre's curve classification I'm reassured we're over-compensating for her thoracic curve and this is simply postural but the deformation that's happening to the vertebrae itself doesn't look that way to me. I'm at a loss to understand the reasoning for all of this and I'm reminded that I should trust.

[leigh9p]

Thanks all for your response. As you may have guessed, she is doing better today. Her natural optimism stepped in and we are making shopping lists for different clothing. It also isn't as painful today. After reading about Nicoles surgery, I feel silly even complaining. I will check out the manual - my husband took it on the plane with him Thurs. and just got back. Thanks for the link Cheryl.

Becky - you are right, she is still so new to this and hasn't had to suffer through a hard brace yet. I can't imagine how hard it must get to get compliance with that. Taylor loves gymnastics too so she can totally relate to your story.

She can't figure out how to go to the bathroom without taking the whole thing off. I told her I read that some of your girls wear thongs and just pull it aside, but she says it goes right up the middle and that isn't possible. Not pushing things too hard right now, but obviously taking it off everytime is not going to work.

The other thing that's tough is that even though the brace isn't covering her entire stomach so she could give herself shots with it on, if she wears a cami (as seen on this board) she can't get to her stomach without pulling it out. One day at a time....

[MATJESNIC]

I am sorry that Taylor is having a hard time with it. Please don't feel badly about complaining. You aren't complaining and you have every right to feel badly that she is having a hard time with the brace. Yes, there are always worse things but as Maria and I like to say, "This is our worst."

Nicole loved her Spinecor from the start because she knew she was supposed to be in a hard brace and we got her this one instead. She wore bodysuits underneath and just unsnapped the crotch. I also bought some pretty panties at Victoria's Secret and had a tailor put snaps into them. If you do that you also have to wear some type of undershirt, too.

Good luck.

[jillw]

Celia, when in 2008 does she go in for her next visit? Are they willing to see her since this shoulder tilt and cervical curve seems newer? I can empathize with your concern.

I guess I didn't realize that the Spinecor overcompensates in some cases.

For those of you who went to Montreal, what is the frequency of visits after the initial fitting? Do they recommend coming in sooner if there is a growth spurt of a certain amount so the fitting can be adjusted?(i.e. if they grow 2 inches before they are scheduled to come back)

My head is spinning - there are no clear cut answers when it comes to scoli, are there?

[Celia]

The curve in the neck was evident 5 months into wearing the brace two years ago and the trend should have been clear to me. I don't know why it wasn't obvious to the doctors There were other subtle signs like Deirdre complaining of headaches and neck pain and then the muscles on the right side of her shoulder became more pronounced. Predicting the future is never an exact science but I don't think it takes a genius to figure this one out.

I spoke to dr. Coillard last week and she assures me that no one has ever developed a compensatory curve from the spinecor brace and that I have to trust her. The schedule for us was one month after initial fitting and then 5-6 months thereafter.

[MATJESNIC]

Celia,

I hope everything is okay for Deirdre.

[leigh9p]

I love the idea of pretty panties with snaps. I tried to show her how to pull them aside this morning and she thought that was just gross. The bodysuit isn't going to work because she has to be able to pull the shirt up and give herself shots in her stomach.

She set her alarm clock for 6 a.m. so she could get up and put it on and then go back to sleep. That way she had it off by 10 a.m. I don't know why, but this is what she wanted.

I've been reading the the book Growing up with Scoliosis - which I was going to have her read, but I think not. I think it will just scare the crap out of her and then to read that all that bracing didn't work. It's too soon for her to hear all this. I was thinking at first that learning what the hard brace is like would help her to appreciate this one more, but I think we are getting there anyway.

Is it typical to want to spoil them rotten? I took her shopping yesterday for a bday present and ended up buying her sweats and shirts that would work. How can you not?

Melissa - thanks for the kind words. I hope Nicole is doing better every day with her recovery. I just read the surgery chapter in that book and was filled with empathy for you all.