spinecor

[cherylplinder]

Caroline,
I am so excited for you. Did Dr. Rivard comment on the amount of correction they hoped to achieve in the course of her treatment?
I wish we had started treatment on Rachel when she was first diagnosed at 7. I didn't know about Spinecor then.
Like Melissa says, we can't go back as much as we might like to. We can only move forward. I always remember that God is our healer. He is in control, not statistics. Most of the time, I rest in Him and have peace.
Cheryl

[desheah]

caroline,

i don't post often on this thread, but my almost 5 yr old son is also in the spinecor through the montreal group. i'm happy to hear that your daughter is doing so well in this brace. congratulations.

could you please post after your appointment with dr. betz? i am very curious to hear what he has to say. my husband and i are thinking about making a trip down there next year since we will be visiting friends, and it never hurts to get another opinion

deshea

[MATJESNIC]

Caroline and Deshea,

Glad to hear your little ones are doing well. Someone asked a question about gym. I don't have a son in Spinecor, so it may be different. But my daughter leaves her brace and bodysuit on. It would be too much of a pain to take it off in school.

Melissa

[christine2]

Hi everyone

My daughter wears her spinecor brace for gym, gymnastics and hockey that was Dr. Colliards suggestion

Christine

[gallathea]

follow-up in Montreal

Hi Cheryl:

Rivard and Colliard haven't said anything to us about how much correction to hope for. Dr. Colliard said that her spine was a bit "rigid", which may mean that it's less flexible and correctible than we might hope. But as long as it doesn't get a lot worse, then we're happy. Any permanent correction is gravy. I guess a more rigid spine can mean that she's had this for a while, although it was never picked up on in earlier check-ups. When I asked Rivard if that made a difference in Spinecor results (infantile vs. juvenile ideopathic), he said no. But I'm kind of confused as to why not.

C

[sas1126]

Not meant to sound "Spammy"

Gerbo,

I'm sorry my post came across "Spammy," but I wrote that because I wore the hard brace as a teen and know if I had the option back then I would have tried the soft brace. And more importantly, I would want to go to someone with experience and who is very knowledgable about the technology.

Best - Sara

[pat]

gym and spinecor

Our daughter wears her brace during P.E. most of the time, sometimes she'll take it off, especially during the summer/hot months; she just slips into the bathroom (P.E. teacher knows she's wearing it) takes it off, does P.E., then puts it right back on after the class. pat

[christine2]

Hi Pat

We have not had to deal with hot weather yet in brace so I would imagine we will do the same. My daughter can not put the brace on herself yet. I am glad you wrote that because it will motivate me to have her learn to do it on her own so she will be prepared!!

Thank you

Christine

[cherylplinder]

Caroline,
I have heard Dr. Coillard imply that larger curves are more rigid. She said that she did not hope to correct Rachel's curve completely. It was too large and had become too rigid. She said had we caught it when it was smaller, it might have been completely correctable.
I just assumed that the bones were more malleable in younger children.
Rachel was diagnosed at 7 with an 18T/17Lcurve. It remained stable for a couple of years and then progressed to 38T/27L in a few months.
I wonder at what point a curve becomes more rigid, or if it is different with each individual? I am assuming it is different for different individuals.
I won't be suprised if your daughter gains some correction over time. I think that Rachel's thoracic curve is still improving. She is definitely more balanced now than she was in August. Her thoracic symmetry has improved even more since then. If they x-rayed her now, I think her in brace x-ray would be better than August.
I worried in August that her shoulders might be more level because the lumbar curve had gotten worse and leveled them out, rather than the thoracic improving. But that was not the case. Both curves had improved in brace. I can only assume that her out of brace measurements are also improved. She looks so different now. Her shoulders were the first thing to level out. Now other parts of her thoracic anatomy are even, also.
I worry sometimes about her lumbar curve. I don't want to over correct the thoracic curve and make the lumbar curve a true curve. Sometimes it looks like the lumbar curve could be progressing. I hope not. I worry about that with every visit, though and so far, I have been wrong. So far, the lumbar curve has not progressed on x-ray.
Cheryl

[gerbo]

I wonder at what point a curve becomes more rigid

I think the obvious answer is that the longer it is in an abnormal position, the more rigid it is likely to become. I would expect that the element of the curve which has been there for years has become quite "set" and will be hard to reverse, whilst a recent deterioration which hasn't produced much in the way of structural changes could still be flexible enough as to be correctible

i wonder even more which structures determine the rigidity. If it purely wedging of vertebrae (which is clearly a long term change), than I would not think there isn't a lot what can be done. Then there are the intervertebral discs (also long term changes), i know their wedging plays a role in making the curve more permanent, but as they are made from softer tissue, would it stillbe possible toi reshape them till some extend?? I kind of "hope" that part of the rigidity of the curve (specially initia;lly) is maintained by thightening of ligaments between the vertebrae on the concave side of the curve. This to me makes sense as ligaments will always adjust to the position of the structures they connect (keep your ankle in plaster long enough and the joint will be totally stiffened up after some months) The good thing would be (if all the previous is correct) that thightened ligaments can be made more flexible by stretching them.

Based on all that I have lisanna regularly laying sideways on (kind of) a gymbal, hoping to "stretch" the presumed tighter ligaments on the concave side, which in return would make the brace more effective......... Whether it works???? Not a clue, but lisanna likes it as she can have her brace off and she gets a massage at the same time

[mrf]

My 12 year old daughter just had her 1 month in TLSO checkup with her ortho. Her in brace curve is 16 (Initial measurement was 25). She's only wearing it 15 hours a day and he wanted 22. He was somewhat ambivalent about the reduction to 16 and said it does not mean she is getting a correction - only that it's holding the curve. he said we will not know anything until we take the brace off after ?? years. We keep bracing until she hits a particular maturity level and then remove the brace with the hope that it holds at the original curve level. He reiterated that the brace is to hold her current curve (25) NOT to correct. Is this what other orthos say as well?

After meeting with Dr Deutchman in New York about Spinecor, we were ready to discuss the Spinecor with the Orthopedist and move on. The ortho was very willing to talk about it and said that while he does prescribe Spinecor to some of his patients (typically those who refuse to wear the TLSO), he still does not believe it to be effective. I discussed with the ortho my conversations with Dr Rivard and he basically told me (in a nice way) that he himself had spent two days with Dr. Rivard in Montreal to learn about the Spinecor system but continues to be less than convinced that it is any better than no brace at all. He pointed to the studies as "marketing studies". He told me that NIH is attempting to do a study on the effectiveness of bracing but is having trouble finding parents willing to be part of the controlled "no brace" group. Of course they won't find anyone - would anyone be willing to sacrifice their child in the name of science?

My daughter has been having terrible pain out of the brace. The doctor suggested that we see the orthotist to have the TLSO adjusted and go for physical therapy, come back in 4 months and then see if we still want the Spinecor (which he does fit) or perhaps a night-only brace. My daughter, who was very ready to go for the Spinecor NOW has picked up on the issue of "noncompliance" and vows to not wear the TLSO. My wife thinks that this is all ridiculous and, based on the fact that she is risser 0 along with her current physical development, is following her growth patterns and will not have a growth spurt for another year. She thinks we should either go without the brace or Spinecor. I went in to today's appointment with the clear intention of telling the orthopedist that we were switching to Spinecor but now, once again, I have lost my conviction and am in doubt. I know we want to do what's best. At this point she has no interest in listening at all and is pretty hysterical about the prospect of the brace and PT. Now what????

[cherylplinder]

mrf,
I sympathize with everything that you are going through. It is really hard to make these decisions.
I was motivated to respond because of the pain that my daughter Rachel was in before the Spinecor. She had had significant pain for at least a year. She couldn't sit at the piano for more than 20 minutes. She couldn't run and play. She couldn't do anything that required repetitive stooping.
Our orthopedic surgeon put her in the TLSO first. There was absolutely no correction of her curve in brace(TLSO). It was a moot point as to whether to continue with that. She was only in the brace for the few weeks it took us to get an in brace x-ray.
Our ortho said the same thing that yours told you before she got her TLSO. He said that the brace(TLSO) was to hold her curve. He indicated that he expected her curve to return to what it was before bracing after bracing with the TLSO was completed.

Back to the pain. She has not been in pain since she got the Spinecor. The change was immediate. The first month or so, she was in pain when she was out of brace. Now, her muscles must be more adjusted to where the brace holds her because she can be out of brace for hours and never has pain.(She generally wears her brace 23 hours a day. She is very comfortable in it. But this summer we went camping in July in the Smoky Mountains. She was out of brace for hours at a time playing in the streams, etc.)
Rachel is now 11, but had just turned 10 when she got the Spinecor. She has been in the brace since January. In the year before the Spinecor, her curve, unbraced, progressed from 18T/17L to 38T/27L. She had been at 18T/17L for a couple of years, so it was quite a surprise. She only grew a couple of centimeters in that year.
Since January, Rachel has grown about 3 inches. Her first in brace(Spinecor)xray showed 31T/19L. At her 4 month check up, she was 23T/22L, in Spinecor brace. At her 8 month check up, she was 20T/18L in Spinecor. So far, she is growing and her curve is at least holding. We have not done out of brace x-rays.
She looks great. Her right shoulder was AT LEAST an inch higher than her left in January. Her shoulders are now even. Her alignment is much better than before brace.
This brace is a God-send for her. Dr. James Sanders at the Erie, PA, Shriners told me in April, when we saw him for a second opinion, that NO BRACE would hold Rachel's curve. He said she had a 100% chance of surgery, and according to the stats, he is absolutely correct. Nonetheless, for the time being, we are beating the odds. That may not continue, but because of her growth since being put in the brace and her results so far, her prognosis is good for that to continue. And my child is not in pain and is fuctioning normally.
Best wishes in making a very difficult decision.
Hugs,
Cheryl Linder

[cherylplinder]

Gerbo,
She lays with her convex side on the ball to stretch her concave side, is that correct?
Stretching the ligaments, doing the torsorotation excercises, swimming, and the Spinecor all make a lot of sense to me!

[gerbo]

She lays with her convex side on the ball to stretch her concave side, is that correct?

yep, we actually put one or two pillows in between to try to make the angle a bit bigger to produce more of a stretch, as without that the top of the ball just flattens out through bodyweight (if that makes sense.....)

Stretching the ligaments, doing the torsorotation excercises, swimming, and the Spinecor all make a lot of sense to me

i am a pretty "logical" kind of person, so I look for things which make sense. And still, there is this forever insecure type of feeling lurking about, am I making any difference? Where is it all going to end??

(but in the mean time; she is a very happy little girl at the moment, what more does one wants.........?)

[Celia]

He reiterated that the brace is to hold her current curve (25) NOT to correct. Is this what other orthos say as well?

If your daughter were much younger I think the possibility of getting *some* correction would be possible. 16 degree in brace correction is not bad but keep in mind that you're probably going to end up with a 25 degree curve once bracing is over and done with ....or worse

I discussed with the ortho my conversations with Dr Rivard and he basically told me (in a nice way) that he himself had spent two days with Dr. Rivard in Montreal to learn about the Spinecor system but continues to be less than convinced that it is any better than no brace at all. He pointed to the studies as "marketing studies". He told me that NIH is attempting to do a study on the effectiveness of bracing but is having trouble finding parents willing to be part of the controlled "no brace" group. Of course they won't find anyone - would anyone be willing to sacrifice their child in the name of science?

It's already been determined that rigid bracing is *ineffective* for a specific age group of adolescent curves because these *caring* doctors wait for the curve to progress beyond 30 degrees before starting treatment!!!! According to the studies - given your daughter's age and curve size she might be able to avoid surgery.....provided she wears her brace. I'm not even going to comment on the NIH "study" because it's just going to get me really REALLY upset Keep in mind that if you wait too long, the spinecor may not be an option and you won't have a choice but to continue with the TLSO.




celia