Why I decided to brace my daughter with the SpineCor

[Pooka1]

Perhaps I should have posted Immi's xrays here and you might have commented on them Did I commit a forum faux pas?

Nah that's okay.

I know it's going to be an uphill battle trying to make this little thread longer than the Spinecor thread. Hearts and minds will have to change. It's going to take time, probably years.

[Pooka1]

Laura,

I did see Immi's xrays, they are quite impressive!! Congratulations.

They are impressive.

My vague impression from the anecdotal testimonials flying around is that Spinecor seems to have more apparent success with the JIS crowd than the AIS crowd. It's so new that there are likely few, if any, patients who started with Spinecor so young. That may be the crowd that benefits from Spinecor. Maybe wearing it starting at a younger age does increase its success of holding the curve through the growth spurt. We just have to wait for the data.

[emarismom]

Sharon,

I wish I could say that I honestly believe that the Spinecor will prove to be at least "more effective" on the JIS group, than it appears to be on the AIS group. Especially given the fact that my daughter is in that group. However, it may just be that in the JIS group there is a long stretch from 6-10 where growth is slower and steadier. That was actually a huge factor in me bracing my daughter at age 8- to hopefully reduce the curve BEFORE she went through puberty.

It appears that use of the Spinecor in younger children seems to "control" the curve, as most of the people who post here seem to have younger children who are having success. It could also be that these curves
a) would not have progressed at all or b) still will progress as these children reach adolecence.

There should have been, within the last several years, many children who have gone through puberty while wearing the brace. Unfortunately, we have seen more failures of the Spinecor to control the curves than we have seen successes.

There may be many reasons for this. Maybe the parents of children who are doing well no longer need support from the forum, thus are not posting their successes. Also, many of the "failures" have been in children who were braced with larger curves. Some could have even been due to lack of compliance. I can remember specific cases where the children weren't 100% compliant with the 20 hours per day.

As Concerned Dad pointed out, there truly is a lack of testimonials of children going through puberty with success. It will be a long while before the data is out. Until that time, testimonials from other parents is the only feedback we have. While it doesn't replace sound scientific evidence, it does help.

Even without the scientific data, at this point in time, it seems Spinecor is the best option for kids with JIS or AIS who are at high risk of progression.

[leahdragonfly]

skeletally mature kids post SpineCor

Has anyone whose child is wearing a Spinecor asked their orthotic practitioner and/or Dr Rivard for more information about SpineCor graduates? Someone out there knows more than we do on this forum about the kids who are done growing and done with SpineCor.

IMHO, I am guessing that if there was a large number of such kids that had successful, Dr Rivard and colleagues would be publicizing that info. I know there are many of us parents out there who are dying to know that info. I would certainly have entertained the idea of SpineCor for my daughter (at age 6 with 26 degrees) if there was better/more scientific evidence.

[Pooka1]

How long has Spinecor been around?

Have they been bracing JIS kids that entire time or did they start with AIS kids?

If the latter and they haven't been around long enough, there may be so few cases that is really wouldn't matter what they were. I really wonder if there is more than a handful of data on Spinecor plus JIS at this point.

The data they have published so far is all AIS, no?

[emarismom]

I have only seen data related to AIS. I do know that there are some JIS kids who have been braced for at least 3 years, as they were and some still do post on these and other forums.

It really is interesting that I never thought to ask about current statistics with Emily's orthotist. That will be my #1 question for him the next time I see him. Although, his answer will likely be based on his personal experiences, and not on measurable data.

Maybe it would be an option to send an email to Dr. Rivard regarding the current state of the research with JIS. In the past when I have emailed him he has been very quick to respond.

I do think that there is more than a handful of JIS patients wearing Spinecor. Just do a search on You Tube and you will see quite a few testimonials.

[Pooka1]

I do think that there is more than a handful of JIS patients wearing Spinecor. Just do a search on You Tube and you will see quite a few testimonials.

I was unclear.

I realize they are bracing JIS kids left and right now.

I meant there is likely only a handful of JIS patients who wore it long enough into adolescence and through the growth spurt to be able to ask whether the outcome for them is different from the AIS patients who didn't wear the brace for that long. This is more likely if they only braced AIS kids for the first several years after the brace was invented. I have no idea what those guys did... we would have to ask them.

[RugbyLaura]

As I'm sure we've discussed before, the distinction between AIS and JIS is sometimes a bit fuzzy. For the purposes of studies Immi is classes as AIS as she was braced a week before her tenth birthday.

However, we know that she is really a JIS case as her curve has been around (and apparently progressing) since she was 7/8...

BTW, what I particularly like about Immi's most recent xray is the apparent reduction in the length of the curve. At the original appointment to fit her rigid brace, the orthotist said that she had an unusually long curve which made it hard to brace.

[concerned dad]

The Spinecor has been around a lot longer than I initially realized. At least 10 if not 15 years.
There have been many kids who have gone through adolescents wearing it. I was just wondering if ANY of them (or their parents) were on this forum.

The following is from Dr Coillards most recent paper. Emphasis is mine.

Published in: Disability and Rehabilitation: Assistive
Technology, Volume 3, Issue 3 May 2008 , pages 112 - 119

Abstract

Purpose. To evaluate the change in spinal curvature and posture of Idiopathic Scoliosis patients when a curve specific 'Corrective Movement© Principle' (CMP) is applied.

Methods. This prospective interventional study was carried out on a group of 639 patients (92.3% females) having idiopathic scoliosis treated with the SpineCor brace. All girls were premenarchal or less than 1 year postmenarchal. Assessment of brace effectiveness followed the SRS outcome criteria for bracing. The clinical, radiological and postural evaluations assisted to define the patient classification, which guided the unique application of the CMP to each type of curvature.

Results. A total of 583 patients met the outcome criteria. Overall, 349 patients have a definitive outcome. Successful treatment was achieved in 259 (74.2%) of the 349 patients from the fitting to the weaning of the brace. Some 51 immature patients (14.6%) required surgical fusion while receiving treatment. Eight mature patients out of 298 (2.7%) required surgery within 2 years of follow-up beyond skeletal maturity.

Conclusion. The SpineCor brace is effective for the treatment of adolescent idiopathic scoliosis. Moreover, positive outcomes are maintained after 2 years because 151 (93.2%) of 162 patients stabilized or corrected their end of bracing Cobb angle up to 2 years after bracing.

Now lets consider the "51 immature patients." Dr Coillard says further on in the paper:

Percentage of patient who have had surgery recommendation/undergone before skeletal maturity. A total of 51 immature patients (14.6%) out of 349 who respected the inclusion criteria and who had a definite outcome (298 + 51), required surgical fusion while receiving treatment. The average curve magnitude at bracing in this particular group was 32.7° ± 6.1° (range: 17 - 41°). General indication for fusion in all patients was progression of primary curve of more than 60° in thoracic region and 45° in thoracolumbar and lumbar region.

She goes on to say that the average curve of the 298 successfully treated patients (at the start) was 26.3 degrees. I would be curious to know of any other difference (beside curve amplitude) between the two groups.

[michele27]

Since my daughter is likely to begin her main growth spurt and menarche in the near future, the issue of Spinecor's effectiveness during adolescent growth is a major concern. I would love to hear from someone whose child was successfully treated with Spinecor through adolescence. One reason I think we hear of unsucessful treatment is because of the wait and watch protocol. Six months could be the difference between starting treatment under 30 degrees or not starting until 35+ degrees, making all the difference in the world when trying to hold or correct a curve. Of course, there is so much inconsistency with how to treat, when to treat, or even if to treat it's hard to say whether any brace helps or not. You just can't know if your child's curve would progress or stabilize on its own unless you choose not to brace at all. The main reason I have for wanting to try Spinecor is for the increase in mobility and comfort. If it doesn't work, we'll try hard bracing, all the while wondering if any of it makes a difference and I suppose we'll find out in the next few years. Thanks, CD, for finding the latest findings from Rivard/Coillard. It would be great if we knew of any other commonalities between the subjects that eventually required surgery.

[Pooka1]

I can't find the text on line.

Results. A total of 583 patients met the outcome criteria. Overall, 349 patients have a definitive outcome.

What's the difference between "met outcome criteria" and "definitive outcome?"

General indication for fusion in all patients was progression of primary curve of more than 60° in thoracic region

Why 60*? Why not 70*? Why not 170*?

[concerned dad]

I think Michele27 summed it up pretty good. As was the case with us, I detect the same uncertainty, frustration and ultimate resignation to try what seems best right now based on the data we have. Unfortunately, Michele's child is on the rising end of the growth curve and my daughter is on the waning end. It would be interesting if I knew what my daughters curve was 1 or 2 years ago. In that regard for my daughters progression, her pediatrician had scoliosis as a child. She said she always checks carefully. She did not note anything last year (this year (Nov) it was 38 degrees and she was the one to notice it). My daughters school screening in September missed it. Did it progress rapidly over the last year? Was it there for several years and just missed? I wish I knew. I thought it intersting that in the two months we had to wait to see Drs Rivard and Coillard her curve did not seem to progress at all(although the margin of error thing is there). I was pretty stressed over those two months that we were letting time slip by. Now I wonder if we are bracing unnecessarily. I guess I am holding out some hope that, so long as her wearing the brace is not a hardship, perhaps she might obtain some correction from her original curve.

I can't find the test on line.

What's the difference between "met outcome criteria" and "definitive outcome?"

from the Coillard paper

Respecting the criteria mentioned above, we needed to exclude some patients from the actual study. This prospective interventional study was carried out on a group of 639 patients (92.3% females) having idiopathic scoliosis treated with the SpineCor brace. Some 583 patients respected the inclusion criteria, 234 (40.1%) did not complete the treatment by brace at the time of the analysis and 51 immature patients required surgical fusion while receiving treatment, leading up to 298 patients who had reached skeletal maturity at the end of bracing. Out of this cohort of patients, 162 patients had 2 years and 69 patients had 5 years follow-up post-bracing.

The "criteria mentioned above" was the SRS criteria

Definitive outcome are the sum of the patients who are finished bracing PLUS the patients who had surgery (or surgery recommended)

Why 60*? Why not 70*? Why not 170*?

Groundhog day The SRS wants the researchers to report the number of patients who required surgery AND the indications for surgery.

[concerned dad]

BTW, what I particularly like about Immi's most recent xray is the apparent reduction in the length of the curve. At the original appointment to fit her rigid brace, the orthotist said that she had an unusually long curve which made it hard to brace.

The xrays are impressive. To my untrained eye I was surprised to hear that it measures as high as it did. Perhaps that has to do with the length of the curve.

[Pooka1]

Groundhog day The SRS wants the researchers to report the number of patients who required surgery AND the indications for surgery.

I wonder what the stats would be if they picked a real world surgery trigger angle.

[concerned dad]

One more thing (no I am not trying to bump the post count to challenge the SPineCor thread - it would never happen anyway) I forgot to mention that Dr Dolan posted a response on the UK forum. www.scoliosis-support.org in the thread titled BrAIST