spinecor

[MATJESNIC]

You can't always go by the initial correction. Remember Nicole went down about 15 degrees at her fitting and that was considered really good. I think it just depends on the type of curves you have. Hers was obviously the aggressive type. Not all are like that. I think it also depends on where you start. Nicole was already at a 40 when she got braced.

[rtremb]

Melissa:
Thanks for the information about Nicole's first fitting - I will bear this in mind as we go along. I am thinking we can't stay with the Spinecor too long if it isn't working for Esme in that there may still be time to try something else if it doesn't work. Not wanting to sound too negative but, like most, we really want to avoid the surgery if we can.
Esme's curves moved very rapidly over the last nine months but she did grow a lot too (height-wise) in the last year. I am measuring her height weekly at present to keep a look out for a growth spurt.
Ruth

[MATJESNIC]

Ruth,

I want nothing more for you than to avoid surgery for your daughter. I don't blame you for trying to avoid it. Just be sure you keep close tabs on her curves. I really regret that Dr. Rivard had us coming every 5 months. Within those 5 months Nicole's curves went up to the 50's and he told us she needed surgery. By the time we got two surgeons opinions and by the time we settled on the surgeon, her curve was 60. I feel we really lost time. Her current surgeon would have liked to have done the surgery sooner.


The best of luck to your family.

[WNCmom]

Ruth, I wish you luck today with your Spinecor appointment, and look forward to hearing about it. I've been away (and away from the internet) for a week.

Someone a few days back mentioned "pseudo boxer underwear." Under his Spinecor brace my very thin son wears boxer briefs (we had to look a little to get a brand where the legs are long and snug enough) and the same sleeveless (muscle-type) t-shirts we got to go under the Boston brace he wore for six months before that. They seem to work well.

Also, we found that the Boston brace increased his waist size at least a full size and made his long pants shorter (since he is so long and tall for his age and waist size, that's always an issue). With the Spinecor it's a nice bonus that we don't have to buy new jeans so soon. It does increase his waist size, but not as much. Because he had to contend with the Boston brace first, he doesn't seem irritated with the Spinecor. It's no more of a hassle to deal with, and is more comfortable--and of course he's motivated, because the Boston wasn't working.

We are 4 weeks away from his first Spinecor check-up and I'm already wishing it was sooner....

Mary Ellen

[jillw]

Melissa, so you wish they had Nicole come in for more frequent than 5 month checkups? I wish we could go in every month although of course all that Xray radiation exposure would not be good. Do you wish she came in more frequently than 5 months all along? Or was it because she was growing a lot then? It seems it would make sense to havwe the parents monitor their kids' growth/weight changes and maybe come in sooner if there has been a big change. I guess another lesson from you is that it would make sense to research surgery doctors in advance so we'd know who to go to if there is a fast jump. I learn so much from all of you! Thanks!

Ruth, good luck and let us know how it goes!

Mary Ellen, We have 3 weeks until our 1st checkup and I can't wait either. Do you worry at all that you are putting the brace on correctly? I know I have the bands snapped in the right place, but that maybe the placement of the bands is a little to high or a little too low...Well, I won't be as overwhelmed next visit so I can pay very careful close attention adn take lots of pictures!

[MATJESNIC]

Mary Ellen,

In the states, the orthos want you to come in every 3-4 months. I had tried to schedule coming in sooner, but they are so busy. Five months is a long time. I didn't enjoy having to drive to Montreal for an hour appt. so I guess I was almost glad that they didn't want to see her more often.

You are so right about knowing who the surgeon may be ahead of time. We thought we had our surgeon picked out. Dr. D'Andrea from Shriner's in Phila was who we wanted. In my mind, she would do our surgery if we needed it. Well, when we went there, we were told she had left for private practice. That is when we started scrambling. On May 28 we were told by Dr. Rivard that Nicole absolutely needed surgery. Four months later, she had the surgery at CHOP. I guess that is not such a bad wait. But her curves really went up quickly in that small amount of time.

[WNCmom]

Jill--

I don't worry about putting the brace on correctly. My husband was with me and Sidney is 12 and has a good memory, and they had us put it on at least twice while they were out of the room and they checked it each time. A few days after we got the brace, I had to go out of town for a week, so my husband was monitoring....he feels quite confident we remember all the details (I took the notes), so that's not an issue--at least not at the moment. Sidney has gotten to the point now that he can take it off and put it on all by himself. I think you're right--at the next visit you won't be so overwhelmed and will be able to remember more. There's a lot of info coming at you!

Melissa--thanks for the reminder about being sure about a surgeon in advance. I've had a gut feeling we need to check and make sure about the ortho (Dr. Campion, a pediatric orthopaedic surgeon) we have been seeing for the past year. He came highly recommended, but I have not checked with other families, and have not checked into the reputation of UNC Children's Hospital in Chapel Hill. I am also a little concerned because there is a discrepancy between the measurements made of an x-ray taken at the end of August in Chapel Hill and the measurements by Dr. Ouellette (a chiropractor in Atlanta) of the same x-ray...I was thinking he (Dr. Campion) made his own measurements, but now I don't know. Also, Campion says to come in every 6 months. In any case, I hate having one foot in the world of surgery while we're trying to be positive and doing all I can to avoid surgery, but preparing for the event of surgery, especially with such a large curve and low Risser grade (0)seems to be a wise thing to do.

So--is there any one place to look up surgeons and their rating with scoliosis surgery?

Mary Ellen

[Celia]

Brace yourselves for a silly question Does anyone know *anything* about the Spinecor physiotherapy program and what is involved??? I've been looking at encouraged exercises lately and was wondering if anyone, anywhere had information on this?

[WNCmom]

Do you mean has anyone used it? We asked for the exercises (I had the feeling you had to ask--it was an itemized line on our final bill) and got a printout (with photos) describing how to do them. The doc told us we could go to a physical therapist or if we felt knowledgable enough and could set up the basic equipment needs at home, we could do them on our own. We did the latter. But it's only been about 2 weeks since we started--still feels pretty new.

If this is what you're asking about, it takes only about 10 minutes to do them each day. However, the muscles being recruited are very specific.

Mary Ellen

[Celia]

Thanks so much Mary Ellen! Yes, that's what I meant. I didn't know it was as easy as getting a printout. I'll phone the office today in Montreal and ask for a copy that's specific for my daughter's curve type.

[jillw]

Celia, I had been wondering the same thing! I believe that MaryEllen's son is treated in Atlanta so I don't know if the folks in Montreal will be the same, but I'm curious to hear what happens when you call. Thanks!

[WNCmom]

I forgot to say that Dr Ouellette recommended we get an exercise ball for Sidney to sit on when doing the exercises that require sitting, so we did that. But really, our outlay for the setup was minimal. We use an old bicycle tire tube for the stretchy band, and after looking at the photos and the exercise requirements, my husband put a large screw-eye under our kitchen countertop at the right height, and it seems to work fine so far. But we will check this out with the doc when we go back next month for a check-up to be sure we're doing it properly. My husband has some experience in fitness/weight training, so we feel pretty sure we are. We live in a very rural area and physical therapists are not nearby.

I think Jill is correct to wonder whether what you'd get in Montreal would be the same as in Atlanta (even though the doc says he has worked closely with the drs in Montreal). I do notice that the SpineCor logo is at the top of the printout along with the type of curve being treated. The exercises would be different according to which curve it is.

Mary Ellen

[leigh9p]

Hi all - a couple of notes after reading through your posts. We just had the one month check up and even through she was putting the straps on correctly, it wasn't sitting the way it needed to be. The lower strap was riding low on her hip bone and not on her waist. So I'm really glad we had a 1 month check up.

Also, they insisted I go see the chiro in SF for some PT for her (2x week for a month and then 1x). I said I thought we could do it from a print out, but they said at least have her come learn it for a few weeks and then we can transfer. I just can't have her miss that much school to go that often to the city, but I do want her to have exercises. Lord knows when she'll have time to do them.

I like the suggestion about measuring every week - I'm going to do that.

[rtremb]

Well we made it to Montreal and back safely. We have the new Spinecor brace for Esme but I am feeling a bit depressed and discouraged though. Dr. Collard was quite insistent that Esme should not have the brace and should go directly to surgery. Dr. Rivard explained that we wanted to try the Spinecor and still gave it a 10-15% chance of success. While we know this is a small chance we are not prepared to go to surgery yet. Dr. Rivard also explained that the best we can hope for is to hold the curves where they are and that there is very little chance for actual reduction. We are thinking we will need to combine the Spinecor with something else if we want curve reduction – like torso rotation, Pettibon, physio, etc.

Before the brace fitting Dr. Collard explained that the brace might make the in-brace curves worse however the in-brace x-ray showed a 1-degree correction on both curves so she agreed we could go ahead and try it. We had hoped for more correction but since we were warned the brace might make the in-brace x-ray measurements bigger we were glad when it didn’t. When we asked if wearing the brace would make the curves worse both doctors assured us it would not.

When we asked about the physiotherapy part of the treatment they did not seem to have anything available or if they did they didn’t want Esme to do it. They recommended ballet dancing, saying they had had the most success with ballet dancers. My daughter is not the ballet dancing type unfortunately she is more likely to be found up a tree reading a book or doing her Rubik’s cube!! We are very disappointed we did not get the physiotherapy book or some instruction on appropriate physio – we had thought this came with the brace.

Esme has been having a bit of a hard time getting used to the brace. Her arms are going numb in it, like they did in the night brace, however the more she wears it she is finding this passes after ten minutes or so. The crotch bands are very tight and combined with the leg bands she is having a hard time sitting down. I am wondering if it is okay to loosen the crotch bands a tiny bit? She is persevering though and wearing it for a few hours then taking a break for an hour. She was able to fall asleep last night in the brace, which was a huge relief since she never did in the Charleston brace. Dr. Collard did say it would take a couple of weeks to get used to it and Dr. Rivard said it has been put on to apply more pressure than usual because of the size of her curves.

She didn’t make it to school today but had lots of homework to catch up on so she did that. She is very worried about school tomorrow since she can’t sit for long – the Vice-Principal is supposed to have told the teachers she will be wearing the brace – I hope he did.

Our next appointment is on November 28th.

Ruth

[Celia]

Ruth,

I wouldn't get into ballet because I've read of A LOT of children who were ballet dancers/ cheerleaders and gymnasts and their curves progressed quite aggressively and I'm almost certain it had something to do with all that jumping up and down. I don't consider "1" degree correction good! Maybe they know the spinecor can do very little with a curve that size HOWEVER I have read of people having remarkable success with the Cheneau brace combined with physiotherapy and their curves were in the advanced stages. There are other things to try as well besides surgery. For instance my previous ortho would put children in a corrective cast for a three month period and this would correct the curve somewhat to a much lower number, say 30 degrees before going into a regular brace. If I were in your situation, this is what I would do. I would not put my daughter in the Spinecor brace until I got the curve down by other measures such as traction or casting. Check out an Osteopath as well !!!!