spinecor

[Pooka1]

I'm not 100% sure on that - but I believe that the kids who got inserts/lifts for leg lenghth discepancies got them right from their orthos.

Keep us posted!

Our ortho gave my girls their inserts to correct their flat feet.

I wish my flat feet were corrected when I was younger.

Not sure a podiatrist is necessarily skilled in this area like an ortho is but I don't know that. And I doubt chiros should be dabbling in this (or any) area.

[HaleyMom]

We didn't have to go to a separate Dr.

They had a computerized mat in the office that they had her stand on. The mat created a topological map of the bottoms of her feet as well as determined the relative weight on each foot. She puts ~ 6 pounds more weight on one foot than the other. They also had her walk across the mat to look at how her feet strike the ground. You can watch on the computer and clearly see how her heal strikes the ground and then the entire foot rolls inward.

The custom-made orthotics will cost you a couple hundred so ensure you have pre-approval from your insurance company first.

[WNCmom]

Sharon--

I'm glad to hear the results of your girls' tests. A week ago Sidney also had an echocardiagram to rule out heart problems and an ophthalmology test to rule out lens dislocation. I just got the results of the echo today, and am happy to report that it shows his heart to be normal. We knew immediately about the eye exam; it also showed no problems. So you're right--Maria's gut feeling was right on.

I agree that there are many people walking around who look like they could have Marfan's--my husband and many in his family are some of them. Sidney does have mild protrusio acetabulae (a thinning of the space between the femur head and the pelvic socket, as I understand it), and that's what concerned Dr. Betz and causes him to believe a Marfan-like condition is driving the scoli curve. But we're all breathing a sigh of relief that the two really serious conditions that could also be present are not.

[Pooka1]

Sharon--

I'm glad to hear the results of your girls' tests. A week ago Sidney also had an echocardiagram to rule out heart problems and an ophthalmology test to rule out lens dislocation. I just got the results of the echo today, and am happy to report that it shows his heart to be normal. We knew immediately about the eye exam; it also showed no problems. So you're right--Maria's gut feeling was right on.

Mary Ellen, that's great! What a load off! You and I have been on the same path here somewhat and I think about Sidney during these appointment the girls are having.


I agree that there are many people walking around who look like they could have Marfan's--my husband and many in his family are some of them. Sidney does have mild protrusio acetabulae (a thinning of the space between the femur head and the pelvic socket, as I understand it), and that's what concerned Dr. Betz and causes him to believe a Marfan-like condition is driving the scoli curve. But we're all breathing a sigh of relief that the two really serious conditions that could also be present are not.

I have to remember to ask Campion at our next appointment about this radiographic finding. I want to know if the girls have that. The cardiologist agreed my girls have many of the skeletal indicators and we have to wait for the geneticist's opinion to see whether they are at risk for emergent Marfan's and so should repeat the heart testing at some later date. Even if they do, we are on top of the heart testing situation so we can get surgery ahead of any crisis. But I hope to have this all put to bed one way or the other by mid August when we see the geneticist at UNC. Then, on to whatever the next crisis is... :eek::)

Again, I'm so happy for your family, Mary Ellen.

Best regards,
sharon

[mariaf]

The cardiologist agreed my girls have many of the skeletal indicators and we have to wait for the geneticist's opinion to see whether they are at risk for emergent Marfan's and so should repeat the heart testing at some later date.

Hi Sharon,

Since it worked last time, I will say it again, my feeling is that the geneticest will have the same answer - that your girls are fine :)

I did want to mention since you brought up "emergent Marans's" that I think I recall reading somewhere (not sure if this is correct) that when the syndrome does emerge later on, it is usually not as severe as the early onset type. Again, my memory if foggy on this - and anyway, as I said, I doubt it will be relevant to your girls.

[WNCmom]

Sharon--

I hope you'll keep us posted on what the geneticist says about your twins. Also, I want to thank you for the fusion surgery synopsis you posted on another thread. It is very helpful to hear from a parent who has been there such a concise and complete description of what to expect.

Mary Ellen

[leigh9p]

Sorry - I can't figure out how to post a new thread so I'm just replying to this one. I used to talk with Allegra, but have not heard from her for awhile and see she hasn't been online since March. I can't send private messages to her because her box is full.

So....Allegra if you are out there? You need to empty some private messages.

And to everyone else...I have not kept up online, but all the same I'd like to update you on my daughter's progress with the Spinecor brace. If you are like me, you read all the kids numbers looking for affirmation that we are doing the best we can for them. if so, you'll like this.

Taylor who is 15 now was dx 8/07 with 28T and 13 L and a riser of 0 to 1.
She was fitted with the Spinecor brace Oct. 07.
In brace she went to 13T; L9
March 08 - T8; 11L - in brace
8/08 out of brace 23T, 8.7L :D:D:D:D:D:D:D:D:D
riser wasn't clear, but he thought she was done growing. She grew about 3 inches this year.
This makes me feel like we absolutely did the right thing.

And for those of you wondering about the 20 hours....Taylor has not been very consistent with that this summer at all. She does, however, sleep in it every night. I would say her avg. wearing time for the summer has been more like 16 hours with large gaps. I just can't make her wear it when it is so hot and she is so busy running around. Also she won't wear it without making sure it is mostly covered which requires more clothes than she'll wear in the summer. She did do the 20 hours during the period when she was growing so much though and I'm sure that made a huge difference.

Thank you all for being there for us!

Leigh

[WNCmom]

Leigh, that's really wonderful news. Thanks for sharing.

Mary Ellen

[jillw]

Leigh, that's good news that her curves were maintained despite 3 inches of growth and that she may be at the homestretch!

Sharon/Maryellen, I"m glad you both got good news re: potential for Marfans. I also found it very educational for myself. I'm going to specifically bring up Marfans/connective tissue disorders at next appointment because many (but not all) remind me of my daughter and/or myself.

[Pooka1]

Maria, Mary Ellen, and Jill, thanks for the good thoughts.

I don't think emergent Marfan's is in the card really but we'll put that to bed with the geneticist visit(s). My girls sure do have many of the skeletal indicators, though.

I asked the cardiologist if he has ever seen a 13.75 year old with all normal heart/aorta measurements and functions to later develop Marfan-associated heart/aorta issues and he said he has seen it. :eek::(

I'll post the genetics results when I get them. I doubt there will be anything to report after the first visit next week, though. The interesting question for me will be if she takes samples to look for the genes associated with Marfan's. The gene tests aren't dispositive as I understand them so she may not test them without some involvement with some other non-skeletal system. She may just have us return if they develop another problem though the cardiologist said he didn't recommend that they need to be retested unless the genetisict suggests it. I trust that's sufficiently confusing for all reading this! ;)

The cardiologist knows the geneticist and said he would send his report to her. So that's convenient. Hopefully the geneticist will agree with the ped and the surgeon in thinking they do not have Marfan's.

sharon

[sparklegirl59]

i was thinking of switching to the spinecor myself. i go to the doctor in two months. i hate the side effects of the brace. i get acid reflux, heartburn, red marks all over my body, i sweat like crazy, and i CAN'T wear the clothes i want to! if anybody even hugs me they are like, "what is on your back?"
i HATE, HATE, ABSOLUTELY HATE IT! so can anyone feel this brace when they hug you??? the straps, are they noticeable??? i have looked at pics of the brace and have been wondering if you can wear v-necks or tanks. can you only wear shirts that have full necks and full sleeves? (that are short OR long sleeves)
any and all help is much appreciated. :)
thanx again in advance!

~~val

[emarismom]

Sparklegirl,

You can feel the brace when you hug someone who is wearing it, but it isn't hard. You just feel the straps. There are many different ways the brace is fitted depending on the type of curve and location of the curve in each individual situation. My daughter has a right thoracic curve with an apex of
t-9. With the way she wears her brace, she can't wear v necks or tank tops. The best type of shirts for her are short sleeve polos with a collar. When she wears these, nothing is visible at all.

[sparklegirl59]

thank u for your help emarismom. :)

[CICI67]

Hi, I am considering a couple of alternatives to rigid bracing for my newly diagnosed 9 year old daughter. One of the alternatives is the SpineCor. Some studies (including those from the makers of the brace) certainly sound very positive. But, I have not seen any discussion of the following cite I found on Scoliosis.com.

This abstract seems to indicate that rather than being perhaps better than rigid bracing, the SpineCor was less effective with this study. I know all studies are subject to being interpreted and misinterpreted, however one wishes.

Nonetheless, while I am very enthused to read all of the positive press and person testimonials about the SpineCor, I am trying to sort it all out and was wondering if anyone else has seen this and has any comments on it. Not trying to cause any trouble pro or con on the SpineCor as I am genuinely hoping that it works since I am STRONGLY considering it for my very active daughter!

Lisa
Newly Diagnosed 9 year old daughter
Looking into alternatives to rigid bracing (VBS? SpineCor?)

---------------------------------------------------------------------
"The Effect of Rigid Versus Flexible Spinal Orthosis on the Clinical Efficacy and Acceptance of the Patients With Adolescent Idiopathic Scoliosis.
Deformity

Spine. 33(12):1360-1365, May 20, 2008.
Wong, Man Sang PhD *; Cheng, Jack C. Y. MD +; Lam, Tsz Ping FRCS(Ed) +; Ng, Bobby K. W. FRCS(Ed) +; Sin, Sai Wing MPhil ++; Lee-Shum, Sandra L. F. PD [S]; Chow, Daniel H. K. PhD *; Tam, Sandra Y. P. BSc(Hons) *
Abstract:
Study Design. A prospective study on the comparison of the clinical efficacy and patient's acceptance of the 2 orthotic management methods.
Objective. To compare the treatment effectiveness and patients' acceptance of the flexible spinal orthosis, SpineCor with that of the rigid spinal orthosis for the patients with moderate adolescent idiopathic scoliosis.
Summary of Background Data. The patients' acceptance to the rigid spinal orthoses is always a concern as it could greatly affect the clinical outcome. SpineCor is a relatively new design for tackling those inevitable drawbacks found in rigid orthosis. However, there was no study to compare this design with the conventional method regarding their treatment efficacy and the patient's acceptance.
Methods. Forty-three subjects with moderate adolescent idiopathic scoliosis were randomly assigned to the SpineCor group (S group, n = 22) and rigid orthosis group (R group, n = 21). Their survival rate in the first 45 months of intervention was studied. The subjects' acceptance to the orthoses was evaluated by a purpose-designed questionnaire, which was administered in the 3rd, 9th, and 18th months of intervention.
Results. In the study period, there were 68% of the subjects in the S group and 95% of the subjects in the R group did not show curve progression. Significant difference (P = 0.046, by Fisher exact test) in failure rate between the 2 subject groups was found although the 2 groups had similar responses to the questionnaire.

Conclusion. The current study showed that the failure rate of the SpineCor was significantly higher than that of the rigid spinal orthosis, and the patients' acceptance to the SpineCor was comparable to the conventional rigid spinal orthosis.

[Pooka1]

If you look on the spinecor page...

http://www.spinecorporation.com/English/index.htm

and click "News," the first item is a rebuttal to this article.

They seem to make some points but it is nearly impossible to asset it independently. And I note the original article was published in a peer-reviewed journal, something the Spinecor inventors haven't done much of to date for whatever reason.

Some things I consider when looking at this situation is why was the rebuttal published only on the Spincor website and not in the journal? Maybe the journal doesn't publish rebuttals but maybe they do and did not accept this rebuttal for some reason.

Good luck in your research.

[CICI67]

Thanks, Pooka1.

I had not seen that response from the SpineCor founders, but assumed something had been said about this study before.

As I investigate SpineCor further, I will certainly be asking lots of questions of any distributors about training, experience, number of patients they have maintained, etc. Seems like maintenance, monitoring, proper wear, etc. is very critical with this type of brace.

Lisa

[jillw]

Lisa, thanks for posting that study - i don't always catch the newest relevent studies out there and Sharon, thanks for pointing us to spinecor's rebuttal.

I believe the company supplying spinecor is separate from the inventors (although I assume that Dr. Rivard/Coillard may still have a monetary interest)? Anyway, we go for a checkup in a month and I'll be curious to see what they say. I thought the rebuttal had some seemingly valid points. On the other hand I found some of their rebuttals curious...for example, I know that some people on this board do not use the spinecor bodysuit - have your doctors ever told you that the spinecor bodysuit was essential to successful treatment? My daughter does wear the bodysuit so it hasn't come up, but I'm curious because that point seemed to be grasping at straws. I'm not sure Dr. Rivard and Coillard would agree with every single point in the rebuttal although they would agree on the bigger issue of specialized training being required.

Also curious, the rebuttal says that the thigh bands need to be replaced every year and elastic bands with more frequency than I thought was being done - so although I have to wait until early oct Iwill ask Dr. Rivard what his thoughts are on the initial study as well as some of the points in the rebuttal related to replacement parts that aren't necessarily in sync with what I thought the practice in montreal was (but don't know since we haven't been a year with the brace yet).
The skeptical part of me things that maybe spinecor corporation tries to push the replacment parts more (for monetary reasons) than the inventors, Rivard and Coillard, who are in the trenches daily and who have more day to day experience. Just speculation.....

It's a shame that study wasn't better organized because it would be interesting to see the results...

[MJB]

I noticed this week that one of Halle's shoulder blades seem to protrude more than the other now, it is the side that she always had the rib hump on... Her shoulders are also looking more uneven lately when she is out of her brace.

She has been experiencing some back pain in the past couple days, especially during her out of brace time, so she ends up wanting to put her brace back on before her time is up.

Also one last thing, her spine is looking much straighter however when she bends over and I see her spine, where her curve is I can't see her spine through her skin but above it and below it I see the vertebrae showing.... should I be concerned?

[emarismom]

I would call Dr. Rivard and let him know what you are seeing, and ask his opinion. Maybe you will need to take her in a little sooner, just to check it out. All of Emily's doctors have always told me to come in whenever I start to notice changes. You could also email him some pictures.

When Emily initially started weaing the brace, there was a time frame where I think she actually preferred to have the brace on too (Not anymore). I think that in the brace she *knew she was or felt she was* straighter. The brace definitely helped her posture to appear better.


I can't always see Emily's spine either. I try to run my finger along where it appears it would be (when she is bent over), to try and determine if the curve is changing. Regardless, of what I think the curve is doing, when we go to get the xrays, my predictions are often wrong. Unless, there is a drastic change, I don't think we can actually see it. Especially when we are looking at the child everyday.

[MJB]

Thank you! I am going to e-mail him this week and ask him. I just can't understand why I can't see her spine where her curve is and with how defined her spine is everywhere else because she is so skinny, it worries me. I try to run my finger down her back but when I get to the area of her curve my finger doesn't know where to go, i can't feel her spine.

[bjflynn6]

i want to throw it off a roof set it on fire use it as a trampoline and run it over with my dads kabota

[Jenmom]

Hi gerbo,

I am new to this forum and my daughter has been wearing the brace for five weeks now. I am having a hard time figuring out when these messages were posted so today is 8/21/08. She had a hard time the first night feeling a lot of pressure with the brace and had lots of tears. Now she is very used to it and hasn't had any problems. We had our first in brace x-ray last week and she had a six degree improvement. Both the Orthist and her Orthopedic Surgeon were happy with that number. Unlike the Boston Brace which gives instant correction in brace, the Spinecor Brace is a gradual improvement. However it is suppose to hold some of the correction if caught early enough where the Boston will go back to the original curve or worse. That is what they told us last Monday. She was also allowed to change the strapping positions so it will be better in her shirts now. To get back to your question, it is pretty comfortable for her unless we go out all day like when we went to Disneyland last week and walked all day. The leg bands start to bother her. We are working with Rita to make a bodysuit with short legs, that would help. Take care.

[pat]

Hello, just came back from our check-up, she started at a "3" in brace almost three years ago, she's holding at an "11," and that's with over 4 inches of growth . . . . so Spinecor's doing it, so far . . . . .
p

[emarismom]

Congratulations Pat!! That is a great number with that much growth!!

[Jenmom]

Hi Pat,

We are just starting out, my daughter has been wearing the Spinecor brace for about five weeks now. Has your daughter had any out of brace x-rays? If so does the correction hold out of brace? Just wondering. Our Dr. said they were only going to do in brace x-rays. Glad to hear you are having good results, that is very incouraging.

[MJB]

Hello, just came back from our check-up, she started at a "3" in brace almost three years ago, she's holding at an "11," and that's with over 4 inches of growth . . . . so Spinecor's doing it, so far . . . . .
p

That is great Pat!

[MJB]

Hi gerbo,

I am new to this forum and my daughter has been wearing the brace for five weeks now. I am having a hard time figuring out when these messages were posted so today is 8/21/08. She had a hard time the first night feeling a lot of pressure with the brace and had lots of tears. Now she is very used to it and hasn't had any problems. We had our first in brace x-ray last week and she had a six degree improvement. Both the Orthist and her Orthopedic Surgeon were happy with that number. Unlike the Boston Brace which gives instant correction in brace, the Spinecor Brace is a gradual improvement. However it is suppose to hold some of the correction if caught early enough where the Boston will go back to the original curve or worse. That is what they told us last Monday. She was also allowed to change the strapping positions so it will be better in her shirts now. To get back to your question, it is pretty comfortable for her unless we go out all day like when we went to Disneyland last week and walked all day. The leg bands start to bother her. We are working with Rita to make a bodysuit with short legs, that would help. Take care.


Welcome Jen! I am glad to hear that your daughter is getting used to the brace! Which Doctor is she going to?

[pat]

Thanks! It is good news! We've yet to do out-of-brace x-rays . . . I've spoke to a couple different doctors about it, and any progression of the curve, they've convinced me, we'll see with an in brace anyway. We're content/comfortable with where we're at. p

[MJB]

yeah, we have only had in brace ones too and will continue in brace until about March 2010...

I feel like this 5 months between appointments is a LONG time though, Halle could use a tightening of her brace, it seems quite loose in areas... she is getting taller and even slimmer with the height.

[MJB]

Does anyone ever wonder if the spinecor brace could be doing more damage than good? I mean I guess we'll never really know and it's a chance we are willing to take but Halle's shoulders are now uneven in the way that the brace is pulling her, opposite of her curve and her rib cage on the side opposite of her curve is sticking out more than the other side.

I guess sometimes I just worry since the doctors in Ontario didn't support the Spinecor brace and I went against them. I do think that comfort wise I did choose the best option for her though.

[Jenmom]

Welcome Jen! I am glad to hear that your daughter is getting used to the brace! Which Doctor is she going to?

Thank you! She is going to Dr. Emory Chang at Miller's Children Hopital in Long Beach, CA. So far we are happy with everything. It took two weeks of phone calls to get everything approved with our insurance and to find Orthotic carrier that was trained that would take our insurance. Dr. Chang's nurse found Jeremy Livingston at Hanger in Downey that just moved here from Arizona where he was trained and experience in using Spinecor. Time will tell but so far we are very hopeful.

Kathy (jenmom)

[MJB]

How often do your Doctors want to re-adjust the spinecor brace and take xrays? he wants us every 5 months but I just read online that it should be every 3 months, 4-5 months if the risk of progression is low, well hers isn't low, he just has us come every 5 months because of the distance that we live to there.

I wish he would take the xray before they re-adjust the brace, I am curious to know her curve before it's tightened again.

[MJB]

Thank you! She is going to Dr. Emory Chang at Miller's Children Hopital in Long Beach, CA. So far we are happy with everything. It took two weeks of phone calls to get everything approved with our insurance and to find Orthotic carrier that was trained that would take our insurance. Dr. Chang's nurse found Jeremy Livingston at Hanger in Downey that just moved here from Arizona where he was trained and experience in using Spinecor. Time will tell but so far we are very hopeful.

Kathy (jenmom)

That is great! Sorry Kathy, I thought your name was Jen LOL.

[Jenmom]

Does anyone ever wonder if the spinecor brace could be doing more damage than good? I mean I guess we'll never really know and it's a chance we are willing to take but Halle's shoulders are now uneven in the way that the brace is pulling her, opposite of her curve and her rib cage on the side opposite of her curve is sticking out more than the other side.

I guess sometimes I just worry since the doctors in Ontario didn't support the Spinecor brace and I went against them. I do think that comfort wise I did choose the best option for her though.

Hi MJB,

When we had our first in-brace appt. last week our Orthotic explained to the doctor how the brace works compared to the Boston Brace which is the brace the doctor wanted to use. Dr. Chang or any other Dr. at Miller's Children Hospital in L.B., CA has not used the Spinecor before. They are actually very excited to see the results because Jeremy (Orthotic from Hanger) explained that the Spinecor brace is attempting to do actual correction not just stablize the curve like the Boston Brace does. Dr. Chang said if it actually does some correction or even keeps it at the same curve he will put it on all his scoliosis patients that need bracing. Dr. Chang said in the Boston Brace her curve would go back to the original curve or worse so he said if the Spinecor will even just keep it at the original curve it would be worth using becuase kids would be more likely to wear it. There is still that 20% that bracing will no work on. Anyway you probably know all this but we were told that her shoulder had to rotate and it had to create an opposite curve to achieve the correction.

We are going to see Jeremy every three months for adjustments and to Dr. Chang every four months for x-rays. How often do they have you go?

[MJB]

Kathy I we only go every 5 months now. Well she got the brace on March 20th, we went back on April 24 and then he said every 5 months after that, although I couldn't go in Sept because of work, so we have to wait till October, which is closer to 6 months... I think she needs an adjustment already though!

[MJB]

Kathy I we only go every 5 months now. Well she got the brace on March 20th, we went back on April 24 and then he said every 5 months after that, although I couldn't go in Sept because of work, so we have to wait till October, which is closer to 6 months... I think she needs an adjustment already though!

I forgot to mention that we have a 6 hour drive to our Ortho....

[Jenmom]

How often do your Doctors want to re-adjust the spinecor brace and take xrays? he wants us every 5 months but I just read online that it should be every 3 months, 4-5 months if the risk of progression is low, well hers isn't low, he just has us come every 5 months because of the distance that we live to there.

I wish he would take the xray before they re-adjust the brace, I am curious to know her curve before it's tightened again.

lol I just asked you how often you go and then read this. Jeremy said Spinecor wants xrays every 3 months but US doctors do not want to xray that often so he asked Dr. Chang to do them every 4 months. My daughter's progression is not low either she went from 16 to 31 in 6 months. She went down to 25 at her first in brace xray. You could ask them if they would consider doing them or often.

[Jenmom]

Kathy I we only go every 5 months now. Well she got the brace on March 20th, we went back on April 24 and then he said every 5 months after that, although I couldn't go in Sept because of work, so we have to wait till October, which is closer to 6 months... I think she needs an adjustment already though!

Wow we are very lucky I think having ours so close. If you think she needs an adjustment and you can make the time I would call and go in. We did that once already and they took us right in. It made me feel better.

[MJB]

lol I just asked you how often you go and then read this. Jeremy said Spinecor wants xrays every 3 months but US doctors do not want to xray that often so he asked Dr. Chang to do them every 4 months. My daughter's progression is not low either she went from 16 to 31 in 6 months. She went down to 25 at her first in brace xray. You could ask them if they would consider doing them or often.



Yep, see Halle went from 20 degrees in Jan to 32 in March... she jumped 12 degrees in 2 months! Although she really took to the spinecor brace and in the first xray she went from 32 degrees to only 9 degrees!!! 1 month later she was still holding at 9 degrees in brace...

[MJB]

yeah, I think I have to wait until the October appointment because I just started a new job last week but I am going to request next time that the time inbetween be less.

How old is your daughter Kathy?

[Jenmom]

Yep, see Halle went from 20 degrees in Jan to 32 in March... she jumped 12 degrees in 2 months! Although she really took to the spinecor brace and in the first xray she went from 32 degrees to only 9 degrees!!! 1 month later she was still holding at 9 degrees in brace...

WOW fantastic results!! Sounds like you are doing the right thing. I have read that the other braces can cause damage but I haven't read anything negative about the spinecor yet. I would love to follow Halle's results.

[Jenmom]

yeah, I think I have to wait until the October appointment because I just started a new job last week but I am going to request next time that the time inbetween be less.

How old is your daughter Kathy?

She turned 13 in May. We found out last October at a regular Dr. appt. that she had scoliosis. She went to Dr. Chang in Dec. with the 16 degree x-ray and he had us wait and see. Went back in June to find it had jumped to 31 and that they wanted to brace her.

[Jenmom]

yeah, I think I have to wait until the October appointment because I just started a new job last week but I am going to request next time that the time inbetween be less.

How old is your daughter Kathy?

I see Halle is 8. I have read that if they start using the brace before their first menstral cycle or within the first year that the chances for correction are much better. Let's hope that is the case for Halle, with those results and her age it seems a good chance.

[MJB]

I see Halle is 8. I have read that if they start using the brace before their first menstral cycle or within the first year that the chances for correction are much better. Let's hope that is the case for Halle, with those results and her age it seems a good chance.

Yes, that is exactly it! Dr. Rivard said that her spine is very flexible right now and he was very happy to see that she took to the brace so well and that it mainly had to do with her age. I mean going from 32 to only 9 is amazing, I did not expect that at all after doing my research and hearing of other cases.

[emarismom]

Jenmom,

I take my daughter to Atlanta every 4-5 months to get her brace adjusted and an xray. (although this visit in Oct. will be closer to 6 months). My daughter has been in the brace for a little over a year now, and this past June I did have an out of brace xray done (as her ortho has asked me to several times in this past year). Her curve out of brace was still around 24 degrees, so there has been no correction, but she is at least stable. In March her in brace xray was 12 degrees.

I am a little concerned now about the frequency of the xrays this year. This year Emily will have had 4 xrays. After Oct. I'm going to space the visits closer to the five month mark at least, as I don't want her exposed to so much radiation. Even though the doctors use filters and vests on the xray machines, I'm still a little nervous about it.

MJB, I didn't realize how much correction Halle got so fast, that is amazing!!

[Jenmom]

Jenmom,

I take my daughter to Atlanta every 4-5 months to get her brace adjusted and an xray. (although this visit in Oct. will be closer to 6 months). My daughter has been in the brace for a little over a year now, and this past June I did have an out of brace xray done (as her ortho has asked me to several times in this past year). Her curve out of brace was still around 24 degrees, so there has been no correction, but she is at least stable. In March her in brace xray was 12 degrees.

I am a little concerned now about the frequency of the xrays this year. This year Emily will have had 4 xrays. After Oct. I'm going to space the visits closer to the five month mark at least, as I don't want her exposed to so much radiation. Even though the doctors use filters and vests on the xray machines, I'm still a little nervous about it.

MJB, I didn't realize how much correction Halle got so fast, that is amazing!!

Hi emarismom,

I understand your concern even though we were told the amount of radiation is so small that it is not to be a concern it is hard not to think about it.

It is wonderful that she is holding out of brace and getting good correction in brace. Seems like it is working for her. I look forward to getting that one year point because Jen will be close to maturity then. Take care.

Kathy

[dsicequeen]

Hi. I am a 20 year old figure skater who has been struggling with my scoliosis for several years. Two years ago doctors were really pushing for surgery to correct my 47.5 degree s curve. That would mean 12 metal rods and 24 metal screws. That would also mean the end of my skating career, which just thinking about brings tears to my eyes. See I am internationally and nationally ranked and I have a lot to look forward to with my skating. The surgeons however gave me "false" hope by saying that I could be back on the ice within 3-6 months in about the same form that I was. Now, any sane and intelligent person could tell that that was incorrect. My parents, seeing my distress went into to super parent mode and while I was barricaded in my room with the music playing really loud they happened to stumble upon SPINECOR. My dad email and called Dr. Gary Deutchman at like 10:30pm and that same night at about midnight they received a call from, one of the men who has changed my life. By the time I came out of my room the next morning my mom and I were booked on a redeye flight to Chicago for me to be fitted the back brace. I was not too happy about having to wear a back brace, but my parents said it was that or the surgery. At first I hated the brace because it was too tight, pulled my body in strange directions, bruised my back and made me even more self conscious of how I looked. After I made it through the introduction phase and built up my wearing time to 20 hours a day I began to see, feel and notice the difference. I quickly learned to hide it, so much so that most of my friends still do not know that I wear a brace and that I even forget I am wearing it. I have now been wearing it for two years and have seen dramatic results. I started with a curve of 47.5 and I am now down to 37.6. We are all amazed by my success. This was not supposed to be possible because of my age and the fact that I should have stopped growing, but x-rays can't lie. My back no longer hurts as much, my skating has gotten better, and I am now 5'10 1/2" with prospects of getting taller if my back continues to straighten out. It has not been all fun and games, but I would not change a thing because I can now go an entire day or more without my back hurting so much that all I want to do is sleep. I urge anyone who has been told that they need surgery or have to be put in the hard shell brace to check out SpineCor.

[dsicequeen]

Hi! I have been in the brace for 2 years. Try wearing dance or ice skating tights or leggings. It really keeps the brace from rubbing. Hope this works for you guys as it has for me.

Danielle

:)

[txmarinemom]

No way, no HOW is she valid. Don't be taken in by "her".

http://www.scoliosis.org/forum/showthread.php?t=7733

They wanted to put *12* rods in her back?

She claims her curve was 47.5 to 37.6°, and only Deutschman (not ANY other doctor I've met - or heard of -in THIRTY years), is skilled enough to measure to 1/10th of a degree? That all other doctors are too stupid to get within a ±5° margin of error?

That she achieved any viable correction after skeletal maturity?

Please.

She's a plant, plain and simple.

[Pooka1]

She claims her curve was 47.5 to 37.6°, and only Deutschman (not ANY other doctor I've met - or heard of -in THIRTY years), is skilled enough to measure to 1/10th of a degree? That all other doctors are too stupid to get within a ±5° margin of error?

Well another problem is even if you could measure to within 0.1 degrees , if you have the patient move around and then take another film in a few minutes, it's not going to be that same measurement to the tenth of a degree.

So even if you could physically measure the curve on the film to that precision, it's still meaningless.

Also, the shill, er... I mean poster, stated she had a double curve but only stated one measurement. I guess that's were the "12 rods" come in to save the day. :cool:

It's curious that the Spinecor folks have now taken to adverting on fora. I would think they have enough customers.

[mariaf]

OMG, this is becoming another case of someone posting the same thing (ala BETAll) over and over again, in this case in an attempt at some free advertising for Dr. Deutchman!

I also can't stop laughing since I read that he (Deutchman) apparently uses a DIGITAL PROTRACTOR and that's how he alone is able to measure curves to within 1/10 of a degree when, as Pam said, the BEST doctors in the world admit there is a 5 degree margin of error. I hope nobody buys this HOGWASH!!

By the way, isn't Dr. Deutchman the guy who tried to con some parents into paying for vestibular testing claiming that there was a connection between scoliosis and one's inner ear!!!???? I believe there are several posts on this forum on that topic.

[Pooka1]

I also can't stop laughing since I read that he (Deutchman) apparently uses a DIGITAL PROTRACTOR and that's how he alone is able to measure curves to within 1/10 of a degree when, as Pam said, the BEST doctors in the world admit there is a 5 degree margin of error. I hope nobody buys this HOGWASH!!

Maybe The Nobel prize folks need to add a new category for

"Measuring Cobb angles to a tenth of a degree."

Normally I'd suggest they just give Deutchman the Nobel in physiology or medicine but this breakthrough is of such a large magnitude that I think it warrants a whole new category of prizes. :D

[mariaf]

Yes, Sharon - and doesn't a "digital protractor" sound like something you've seen on your child's school supply lists??? LOL!!!

Sorry, but I still find that hysterical.

[Pooka1]

Yes, Sharon - and doesn't a "digital protractor" sound like something you've seen on your child's school supply lists??? LOL!!!

Sorry, but I still find that hysterical.

That's a good one but I'm kind of partial to the "12 rods" thing myself. :D

The "Twelve Rods Path," sort of like the "Eight-Fold Path"...

http://en.wikipedia.org/wiki/Noble_Eightfold_Path

Why is Spinecor advertising now? That is the more interesting question to me.

[mariaf]

Why is Spinecor advertising now? That is the more interesting question to me.

It is even MORE interesting to me since the term "advertising" was used in the past regarding the fact that I (and a few other members) were letting people know that the option of VBS existed.

I never quite understood why THAT treatment method was singled out and everything else, including Spinecor which is also a relatively new treatment alternative, could be posted about constantly without anyone questioning that those folks were "advertising".

In fact, back when only Shriners was performing VBS, nobody was making a dime off the procedure since Shriners does not charge for their services. I doubt the prescribers of Spinecor can say the same, so wouldn't that make posts regarding Spinecor closer to "advertising" since someone is profiting from it????

VERY interesting indeed............

[Pooka1]

Yes I agree Maria.

There is no comparison between recommendation by anyone of VBS and Spinecor.

Spinecor is a bracing technique (in a world where bracing efficacy in general is questioned) that costs an arm and a leg and has most of its publishing ahead of it to prove efficacy.

VBS is a surgical technique with some publications under its belt and is free from the Shriner's hospitals.

The Shriner's doctors seem to have their dance card perennially full and so it doesn't see like they have to advertise. Spinecor doesn't see to be in that boat just in terms of how much they get away with charging for the materials and service.

[mariaf]

Well said, Sharon. In fact, the wait to even be seen at Shriners can sometimes be months so, no, they surely don't need to advertise or recruit for patients as some have ridiculously alleged in the past.

[RugbyLaura]

OMG, not you 3 again!

Will you please go away and leave us in peace?

[Pooka1]

OMG, not you 3 again!

Will you please go away and leave us in peace?

:eek:

You're not a woo-woo, remember?

The claims from the new poster are far into the "woo-woo" category on several different fronts.

We can criticize the woo-woo without criticizing Spinecor.

But it is interesting why they are advertising now.

[RugbyLaura]

Okay, okay. Sorry I snapped.

I honestly don't think it's The Spine Corporation people advertising; they have too much class to pull a stunt like this. You never know, she may be legit??!! Stranger things have happened.

I know that when I first discovered Spinecor I was fairly evangelical about it too.

Thanks for putting me straight though!

x

[Pooka1]

Evangelical is fine.

But when you were evangelical, I'm sure you weren't claiming tenth of a degree precision in Cobb angle measurements and the alternative to bracing being 12-rod surgery.

You and this poster don't overlap in the credibility department AT ALL. You are at one end with us non-woo-woos and the poster appears to be pegged at the other end.

[txmarinemom]

Laura ...

Apologies for the interruption to point out Deutschman's advertising (and, BTW, I do believe it's HIM again vs. Spinecor ... he's a repeat offender), but dsicequeens claims were so ridiculous I couldn't, in good conscience, let them stand.

Her entire post was full of misinformation (or worse). My only reason for responding here was to point anyone buying her story to the other thread (same post) she started. I didn't say a word against Spinecor: I just wanted to make sure the inaccuracies and impossibilities she claimed were known.

I guarantee you, had no one said anything, ~someone~ would have believed them. They may have anyway.

Between Deutchsman and the chiro that stole my surgical photos from here (and used them on his website to show people the horrible surgery they'd need if they didn't let him "cure" them), I have very little respect for that profession.

Pass the soap, Sharon.

Regards,
Pam

[mariaf]

OMG, not you 3 again!

Will you please go away and leave us in peace?

Leave WHO in peace???

Once again, you have resorted to hostility (i.e., your comments that we should "go away"). I don't understand WHY you feel the need to get so defensive right away. It's as if nobody can question ANYTHING related to Spinecor (in this case, we weren't even referring to Spinecor but rather were talking about Dr. Deutchman).

You ask to be "left in peace". Funny, I had hoped for that same thing when I would post in the past regarding VBS and would be interupted over and over again by folks, including yourself, who had NO personal experience with, or knowledge of, the procedure.

At least I was sharing from personal experience, what I had learned, and was posting valid information that I had gotten from extremely reputable orthopedic surgeons, not quacks like Deutchman.

And now you seem to have a problem because "us 3" are questioning someone who claims to use TWELVE RODS and have the ability to measure one's curve to within a tenth of an inch???!!!

[Pooka1]

Ah, Pam makes a good point. It is likely NOT Spinecor but Deutchman who is advertising.

That makes mucho more sense. Those wacky chiro types! <waving my fist in the air wildly>

In re claims, it's okay to be evangelical for Spinecor or VBS or whatever. What isn't okay is making counterfactual claims.

The offending poster in this case made several counterfactual claims. Aside from all those, I think it is known that Spinecor can help alleviate pain in adults.

[jillw]

I don't know anything about Dr. Deutschman, but I have been dealing with the inventors of spinecor over the past year and I, too, would be shocked if they would post fake testimonials on spinecor. In fact, Dr. Rivard was nothing but forthcoming to us. He made no promises but did explain to us who the better candidates for spinecor were and how my daughter fit into that profile. Then when we we got a really good in brace correction he did provide hope (not promises) that we can hopefully hold the curve for the next couple years, but even he pointed out that it will be a challenge to hold her curve during her peak velocity growth period. He didn't even talk about permanently reducing her curve (out of brace). Very realistic. No hard sell. No miracle claims. If so, we would have run for the hills. However, there have been individuals who have had fantastic results which does provide some hope for the rest of us-even though we won't all be that lucky. Hopefully over time they will be able to further refine a subset of candidates that are most likely to have successful results. Unfortunately these things take time and we have to make our decisions today.

The takeaway is to take everything with a grain of salt and if you hear something interesting on these boards, independently verify before you make decisions based upon posts on the internet. But I just wanted to chime in that even if somebody is posting "advertisements" on behalf of a spinecor provider, that doesn't mean the entire spinecor system is not reputable (which several of you have already pointed out, above. just chiming in with my agreement). I don't want somebody to be turned off from even considering spinecor if it might be a good fit for their child. It's not for everybody, but it is a valid option for many to consider.

[Mom37]

Just an FYI-Erie Shriners braced with Spinecor as well as other hard braces with an orthopedic surgeon overseeing the orthotist when we went in 2006. We did go there and they do not charge for the brace if recommended. We were advised no brace would hold my daughters curve, which was also advised as true by a second opinion at Scottish Rite, and confirmed with eventual surgery. However Spinecor has been recommended and used, by an orthopedic surgeon there, at least then, but I don't know if they still do or not, to be honest. Just thought that was worth mentioning. I don't think that Spinecor, developed by orthopedic surgeons, to my knowledge, Dr. Rivard, or most are the problem or issue. I do think there are a minority of those bracing, that are the ones giving Spinecor an unfortunate negative taint. I agree parents have to research and do what they feel is best for their own child.

[txmarinemom]

Just an FYI-Erie Shriners braced with Spinecor as well as other hard braces with an orthopedic surgeon overseeing the orthotist when we went in 2006.

Just out of curiousity, I see your daughter was treated in 2006. Do any of the Shriner's hospitals still treat with Spinecor?

Regards,
Pam

[RugbyLaura]

Thank you Pam & Sharon for your intelligent & reasonable posts.

Jill, thank you for putting into words what I would have wanted to. That was a fine post.

Maria :eek:. You're beginning to scare me.

[mariaf]

Thank you Pam & Sharon for your intelligent & reasonable posts.

Jill, thank you for putting into words what I would have wanted to. That was a fine post.

Maria :eek:. You're beginning to scare me.

Very odd, Laura since, in essense Pam, Sharon and I said much the same thing. Anyone who goes back and reads the posts will see that.

For whatever reason, you do not like me personally and believe me, I could care less - but your bias against me is quite obvious with that last post. It's really a disservice to the forum when one constantly brings personalities into it rather than focusing on substance.

Therefore, since it is obvious that you can't comment rationally on anything I post, why don't you just refrain from posting (albeit indirectly) back to me or commenting on what I have to say every chance you get? For the good of the forum, wouldn't that be more constructive than trying to start an argument?

[nate03]

I think that the main reason this thread becomes so intense is because of the ridiculous claims SOME people make about spinecor (not most of the parents but people like dsicequeen). Spinecor seems to be the only brace that people feel a need to prove is THE answer for all in treating scoliosis. I have yet to read anyone write so passionately about the Boston Brace, Providence brace or Wilmington brace and claim that it is the best thing since sliced bread. For example, in dsicequeen's post...........If you replaced the word "spinecor" with the words "boston brace" I am sure you would be reading the same doubt in the replies of the parents who have responded.

There is no "one size fits all" treatment for scoliosis. We all make the best choice we can given the info and options available for our child. I truly believe the parents here just want newbies to make sure their decision is based on facts that they have gotten from a credible doctor, not influenced by ridiculous testimonials and advertising. There can sometimes be significant health issues that may be an underlying cause to scoliosis that NO brace can fix, and these issues need to be ruled out by a medical professional.

-Cara

[mariaf]

I truly believe the parents here just want newbies to make sure their decision is based on facts that they have gotten from a credible doctor, not influenced by ridiculous testimonials and advertising.

Cara,

Thank you for that post.

What you wrote is PRECISELY the reason that I post in cases like this!!

I'm so glad (but not at all surprised) that you "get" it.

[RugbyLaura]

Cara,

I think that the main reason this thread becomes so intense is because of the ridiculous claims SOME people make about spinecor (not most of the parents but people like dsicequeen).

I have been visiting this forum for about 18 months and this is the first post that I have seen that makes "ridculous claims". Your post implies that this has happened before. Have I missed something?

We are very happy with Spinecor, and although I acknowledge that it's not for everyone or every case, I would urge people to include it in their list of options to research.

My worry is that a newbie visiting this thread may get the impression that Spinecor is not worthy of investigation, this is not the case.

Perhaps we should archive this thread & start again?

Laura

[RugbyLaura]

Whoops, I meant: this is the first post that I have seen that makes "ridculous claims" about Spinecor.

I have seen plenty of other ridiculous claims!

[txmarinemom]

I can't help it ...

Cara, I'm still laughing at the thought of anyone writing a "best thing since sliced bread" essay on a Boston brace. Were I motivated to write one, it would contain some pretty creative phrasing of four letter words and ... well ... general *loathing*. (so I shall not ;-)

And, Laura, I second the motion this behemoth needs to die (die, die, DIE!).

I'd suggest, however, the very first post of a new thread contain a link to it. There IS a lot of history here ... especially on how kids started in the brace, and where they are now.

If someone is motivated enough they can dig through it before they make a choice for their child. Anyone who isn't (to do the research on ANY treatment) has already made up their mind, IMO.

Comments, anyone?

[RugbyLaura]

Whoops again. Have just spotted my typos - always doing them, fingers have a life of their own! Would it be OK if I edit my previous posts to amend them or would it be considered sinister? ("what did she edit out?? what did she say before that she's changed her mind about??")

Or shall I just leave them?

Your vote counts.

[RugbyLaura]

Am totally paranoid about editing (as you might have noticed).

I also meant to say that I'd be happy,with a tear in my eye and a fond farewell, for the spinecor thread to be archived. Just so long as is it never deleted entirely. I am emotionally attached to it! Sad but true - I just think it has got(ten (is that what Americans say?)) too big & too difficult to read as research.

Anyone else have an opinion?

Laura

[Pooka1]

I think the Spinecor thread is a phenomenon unto itself.

I have never seen a thread get like that on any forum I have ever read.

I don't understand why it happened. :eek:

[txmarinemom]

I think the Spinecor thread is a phenomenon unto itself.

I will refrain from comment on the "why", and only say it deserves a place in history next to the "Largest Ball of Twine".

Laura, no sinister editing. Fat fingers be damned! ;-) What you wrote was understandable, and in THIS venue, typos are better than ... shady. :cool:

Heh.

[Pooka1]

I will refrain from comment on the "why", and only say it deserves a place in history next to the "Largest Ball of Twine".

Laughing my ASS off! I just scared the bejeezus out of my microswine with my sudden laughing. :D

That is the funniest thing I've read in a very, very, very, very long time.

And take your 12 rods and... LOL!

On man. I'm crying I'm laughing so hard.

[txmarinemom]

Laughing my ASS off! I just scared the bejeezus out of my microswine with my sudden laughing. :D

That is the funniest thing I've read in a very, very, very, very long time.

And take your 12 rods and... LOL!

On man. I'm crying I'm laughing so hard.

And 4 months ago, did you ever think you'd honestly laugh at ANYTHING I said? :D

No one else has snapped to the "Largest Ball of Twine" ref ... or maybe it's not a joke to some ...

And now I'M laughing at "microswine" ...

I feel a limerick coming on (it's far too lively for haiku) ...

[Pooka1]

And 4 months ago, did you ever think you'd honestly laugh at ANYTHING I said? :D

Nope. But I saw the light... :D


No one else has snapped to the "Largest Ball of Twine" ref ... or maybe it's not a joke to some ...

And now I'M laughing at "microswine" ...

I feel a limerick coming on (it's far too lively for haiku) ...

Deutchman the chiro went skatin'
Makin' statements that were far, far too gratin'
With protractor near
A tenth of a degree here!
With himself he should soon be matin'.

(name withheld)

[txmarinemom]

Tenths! I know it all.
Don't you wish I was your "doctor"?
What?? Not so much? Why??

Laff .. the English version in words vs. syllables ... I can do either.

[txmarinemom]

Insignificant.
Want tenths? I can measure you!
Like to buy a bridge?

[RugbyLaura]

I'm sorry ladies; you've completely lost me.

As to the size of this thread - there is one on another forum that I visit with 7746 posts as of this morning. Aptly named 'Hotel California'.

[emarismom]

Well, while I'm not inclined to discuss the validity of the post by Dsicequeen which started this upheaval, I will say that I for one would be very sad to see the end of this thread.

For about two years, this thread has helped to keep me grounded as I have tried to make the best decisions I can for my daughter. Like an old friend, it has been here for me to vent when necessary. It has also been there to share and bounce ideas and hypotheticals off of. I don't know if I would be able to get those same types of responses by starting new threads.

It also provides a timeline on the results of quite a few children. I for one did actually go back and read through the whole thread when I found it and was considering my options. I think if this thread is "Put to rest", it will fall back to lower pages on the forum, and other parents who come along, will not have the "opportunity" to find and use it's vast amount of information.

At the very least, it could be made into a sticky for others to have easy access to. Just my two cents.

By the way Laura, how was your trip to Florida? How did Immy handle the heat? I've schedule our next appointment in GA for Oct. 7. Already starting to feel the anxiety:eek:

[RugbyLaura]

Michelle,

Don't get me started! I am terrified (double :eek:). Immi has grown so much over the summer and is in rehearsals for a ballet at the moment. Out of brace for 6 straight hours a day at weekends. I'm feeling very guily and have had heated 'discussions' about it with my husband.

I try to strike a balance that will make her childhood as enjoyable as possible given the card that she's been dealt. Maybe I am wrong...

Celia has just pointed me in the direction of a study comparing Spinecor with Cheneau and the results for Spinecor are not so good for children in Immi's age range, and these were children with considerably small curves at the start of treatment.

I am very worried at the moment... However, as I've always said - we were told at the beginning of treatment that she is 95% likely to need surgery. We're just trying to put that off for as long as possible.

Don't let this depress you though as Emily is in a completely different category!

Florida was FANTASTIC. First week was hot but Immi was a trouper & wore her brace without much complaint. We got a wheel chair on a couple of days as she had a problem with chaffing due all the walking. To be honest, she's always been a bit of a moaner about walking so was probably glad of the excuse! Also, my son loved the responsibility of pushing her around.

We didn't use her Scoliosis to queue jump in the end. Disney is so well organised with the fastpass system that we really didn't need to.

I loved America - so clean & organised and the food...:D

I would miss this thread too - I have also read every post here; laughed & cried with all of my friends. You're right, I wasn't thinking straight - Long live the spinecor thread!

Laura x

ps, will be thinking of you on Oct 7th, we're Oct 4th

[jillw]

Laura, where could I find the study you are referring to?

Re: ending the thread - basically a new one would start up I assume? I know this thread is a behemoth, but I confess to being one of the people who more or less read through it from beginning to end when researching our options. And I did find it useful. The other thing I like is there is generally one place to go to find most of the spinecor related posts instead of having to read through all the other posts on the board. I am VERY interested in hearing people's results at each of their checkups and since it's now mostly in one place it is easy to follow. Granted, if I skim the topics on "new posts" I could probably catch most spinecor related posts going forward without too much extra time, but a newcomer is not as likely to find it all. Then again, as others suggested, if a second spinecor post could be started with the first post a sticky reference to this board as well as a little background info, it would remain accesible for those motivated newcomers.

p.s. I have to laugh - I edit ALL the time - sometimes typos; sometimes to clarify, sometimes to make mostly incoherent streams of consciousness partially coherent . I never knew about the implications that could be read into editing. Apparently I have a lot to learn about message board etiquette. Does that mean I actually need to follow elementary teachers' advice and actually proofread before I post? Imagine that. : )

[RugbyLaura]

Ah, but you're essentially a well behaved forum member. Unlike naughty old me, you never get involved in forum conflict so your edits are not going to be misinterpreted!

I'll try to find a way of getting the study to you.

Thinking cap is on but got to go & get kiddies (plus 2 cellos and a guitar) from school now.

[mariaf]

p.s. I have to laugh - I edit ALL the time - sometimes typos; sometimes to clarify, sometimes to make mostly incoherent streams of consciousness partially coherent . I never knew about the implications that could be read into editing. Apparently I have a lot to learn about message board etiquette. Does that mean I actually need to follow elementary teachers' advice and actually proofread before I post? Imagine that. : )

Hi Jill,

I'm glad I'm not the only one who thinks like that!

For me it is an occupational hazard - meaning that I have worked with lawyers for the past 25 years and here (at our firm) when we write, we NEVER do a final version until we have gone through 5 or 6 drafts!! I think it's in the lawyers' creed or something - LOL! The guy I work for is a brilliant attorney but I know enough never to finalize anything he gives me until AT LEAST the third time around. So, I guess that I, too, am used to just punching the keys as quickly as possible to get my thoughts down (that's how we were trained)!

The flip side is that I also NEVER take notice if anyone has edited - I guess after being in this profession for so many years, it's not unusual for me to see someone write that way :)

HA - I just edited now - after I posted I noticed a typo in the last sentence and fixed it!

[jillw]

The scary thing is my posts would make an English teacher cringe and are largely difficult to understand and that is AFTER editing!

[Mom37]

Just out of curiousity, I see your daughter was treated in 2006. Do any of the Shriner's hospitals still treat with Spinecor?

Regards,
Pam
Good question. I would call and find out if you are interested in Spinecor. I don't know if Shriners is still using Spinecor, but they were in mid 2006. They used Spinecor, and other braces, depended on the individaul need of your child. They were using it for a while, if I am not mistaken. My daughter went as a second opinion to Shriner's, Erie, PA, but was not treated there. My daughter is seen and under orthopedic doctor care by our third opinion at Texas Scottish Rite Hospital for Children. John Birch, MD, assistant chief of Staff, is excellent, and had an MRI done. There they found out she had Chiari I and Syringomyelia, causing the scoliosis, so it wasn't ideopathic after all, and no bracing, none recommended. Daniel Sucato, MD, was her surgeon, and Dr. Birch, co-surgeon, and I cannot speak highly enough of their work! Shriners, not knowing of that medical condition, as not known or diagnosed yet, still said far too rapid progression for any brace either. My understanding is Spinecor is recommended for Ideopathic, and no claims or promises ever made to me by anyone, including makers that had correspondence with myself and others. Look into Spinecor as a bracing option, if bracing is an option for your child.

[txmarinemom]

Good question. I would call and find out if you are interested in Spinecor. ... Look into Spinecor as a bracing tool.

Oh, nonononono ... not for me, Mom37 ... I did my time in a brace.

I'm 7 months post-op from a T4-L1 fusion, and am doing great. It was the best thing in my case, and I couldn't be more happy with the results.

No more pain - yay!

I don't think I've read where anyone treated at Shriners (at least recently) is in a Spinecor, and was simply asking out of curiousity when I saw they *were* using it in 2006. That's all.

(look Ma ... no edits - LOL!)

Regards,
Pam

[Mom37]

Just an FYI if you look on the Spinecor website, (I just checked), and shriners Erie, PA still uses Spinecor. It is under US, then under PA, then shows the hospital. I would think they would take their name off if didn't, but I didn't call, just an FYI. I am not endorsing, or critcizing Spinecor, or anyone for that matter FYI. Just stating our situation, our choices, opinions, and hope it helps someone. If Spinecor helps anyone, then I am glad. It didn't for our case, due to medical conditions other than scoliosis, but check into Spinecor if you need bracing, and you decide what is best for your child, or if you are an adult, for you. Do what is best for your situation. Best wishes.
Oh, nonononono ... not for me, Mom37 ... I did my time in a brace.

I'm 7 months post-op from a T4-L1 fusion, and am doing great. It was the best thing in my case, and I couldn't be more happy with the results.

No more pain - yay!

I don't think I've read where anyone treated at Shriners (at least recently) is in a Spinecor, and was simply asking out of curiousity when I saw they *were* using it in 2006. That's all.

(look Ma ... no edits - LOL!)

Regards,
Pam

[txmarinemom]

Yeah ... one of the reasons I was curious is because Shriners Houston apparently does NOT (assuming the Spinecor website info is up to date ... because I did look there, but only pulled up info for Texas).

According to the Spinecor site, there are only 2 "authorized treatment centers" (or whatever they call them ... too lazy, er, ummm ... busy, I mean(!), to look it up again ;-) in all of Texas, and both are chiros.

Regards,
Pam

[RugbyLaura]

It seems that Dr Deutschman's digital protractor is not the only one....

http://www.scoliosis.org/forum/showthread.php?p=64683#post64683

[txmarinemom]

It seems that Dr Deutschman's digital protractor is not the only one....

http://www.scoliosis.org/forum/showthread.php?p=64683#post64683

Laura,

It's tough to tell whether you're being contrary or tongue in cheek, so bear with me.

I don't think anyone questioned whether one existed or not, or whether anyone uses one or not (personally, I don't care). The point was "what is the *point* of measuring to 1/10th of a degree", when, as Sharon said, a slight change in posture makes it totally useless.

When accepted margin of error is ±5°, it's an absolutely bogus, misleading figure.

KAlong has 2 posts (both today), and she hasn't said WHO the doctor is in either one. For all *I* know, it IS Deutschman, and I wouldn't be the least bit surprised if it's the skater providing some backup for her 1/10th of a degree claim!

Regards,
Pam

[RugbyLaura]

Tongue in cheek and contrary. Just my British sense of humour; so often misunderstood here :o

The thought had crossed my mind that it might be someone with the very same "doctor" or could be another plant - the timing seems rather coincidental.

Just wanted to share...

[MJB]

Does anyone have experience with any of their straps coming undone in the night? lately Halle has been waking up in the night or the morning with #3 undone and that one is the most important strap for her, it does the most pull. What do they do when this starts to happen? i am going to contact Dr. Rivard but I just wanted to see if anyone has experience with this anyway.

[RugbyLaura]

Hi Marlowe,

Immy's #3 strap has come undone at night 4 -5 times during the 1st 12 months in brace.

Since having new straps (the ones with 2 snaps) this has not happened.

Laura

[jillw]

MJB, A few months after Katie got her brace her #1 would unsnap periodically. Over the next few weeks it became more frequent and the #3 started to unsnap. I think sometimes the snaps lose their "strength" (like babies' outfits sometimes do over time) They told me I could take it to take it to a shoemaker to have the snaps replaced (which apparently is a pretty simple procedure). We were a couple weeks away from an appointment and I didn't make it to the shoemaker before so they replaced the snaps (but not the straps) for me up in Montreal during the visit - it only took them a few minutes to do it. Fortunately it has been 5 months and I haven't had that problem again, but I'm sure it will pop up from time to time. If you have the snaps replaced and they still pop, then I would wonder if she grew and the straps need adjusting.

Good luck!

[pat]

It's actually happened a few times with us; we've got a great shoemaker in town, who just replaces it, while we wait, as good as new $4.00 later . . . .
p

[MJB]

Hi Marlowe,

Immy's #3 strap has come undone at night 4 -5 times during the 1st 12 months in brace.

Since having new straps (the ones with 2 snaps) this has not happened.

Laura


Halle's straps have 2 snaps but she still seems to have them come undone in the night... I haven't contacted Dr. Rivard yet, I still need to.

[MJB]

MJB, A few months after Katie got her brace her #1 would unsnap periodically. Over the next few weeks it became more frequent and the #3 started to unsnap. I think sometimes the snaps lose their "strength" (like babies' outfits sometimes do over time) They told me I could take it to take it to a shoemaker to have the snaps replaced (which apparently is a pretty simple procedure). We were a couple weeks away from an appointment and I didn't make it to the shoemaker before so they replaced the snaps (but not the straps) for me up in Montreal during the visit - it only took them a few minutes to do it. Fortunately it has been 5 months and I haven't had that problem again, but I'm sure it will pop up from time to time. If you have the snaps replaced and they still pop, then I would wonder if she grew and the straps need adjusting.

Good luck!

Thanks Jill! Well we see Dr. Rivard in a month from now, so I think I may wait and see if they change them.

[Mom37]

Does anyone have experience with any of their straps coming undone in the night? lately Halle has been waking up in the night or the morning with #3 undone and that one is the most important strap for her, it does the most pull. What do they do when this starts to happen? i am going to contact Dr. Rivard but I just wanted to see if anyone has experience with this anyway.

We had that happen and we had to have the strap replaced. Someone else mentioned to us they replaced the snap on the body. They can wear out. It was our major strap that had the most pull. Best wishes.

[Jenmom]

My daughter was having trouble with this after they changed her strap positions at her first in-brace x-ray. When I called about it our ortho said he could put a new snap in if it kept doing it but to try switching the order she snapped on the straps. Sure enough that did the trick. Off the top of my head I can't remember the #'s but say she used to snap #2 on the them #4 over it and she just reversed the order.

[RugbyLaura]

Would you believe it? #3 came undone last night! First time in months.

I measured Immi this morning & she has grown about 3cm since her last appointment. Growing like a weed at the moment.

Next appointment 4th October. :eek:

[CAmomof2]

Hi Everyone! We are new to the group..... my daughter was fitted with SpineCor on Thursday (Sept. 25/08), so she is still getting used to it. It is her 1st brace of any kind. She is 9 yrs old and had an out of brace xray of T26 degrees. Her inbrace xray was 17 degrees. Have any of your girls had problems with the leg bands rubbing? If so, what do you do about them? How tight are they supposed to be? This seems to be the only annoying part of the brace for her so far. We go back to Montreal Oct 23rd. It is a 9 hour drive for us. Any suggestions for us? Everything is so new!!!!! Thanks in advance! I'm sure I'll be talking to all of you lots in the future.

Stacy :)

[Jenmom]

Welcome to the group!

The legs bands did bother my daughter at first but she adjusted. The leg bands do still bother her when she has to run the mile at school. Rita at bodysuit.com is suppose to be working on making a suit with shorts built in but I haven't heard from her on how it is going. Her ortho said that is the part that he gets complaints about not the straps as you would think. Jen has a pair of bike/dance shorts that she wears sometimes but they are not practical for every day use for going to the restroom.

Your daughter will probably adjust to them in a couple of days unless she is exercising and then they might rub her. Hang in there, those first few days can be tough on the child and the parents. Take care.

Kathy

[Jenmom]

I just got an email from Rita at bodysuit.com and she said she got the sample back with the shorts built in. She said she wants to change it just a tad but it is only a couple of weeks away from it being able to be ordered. Here is her email address if anyone wants to email her I am sure she would let you know when they are available. Rita Sommerer <rita@ptidistribution.com>

My daughter will be glad to get one for when she has to run the mile at school.

Kathy

[CAmomof2]

Thanks Kathy (Jenmom) for your reply. It's nice to feel that someone else understands what you are going through.
Thanks too for the info on the bodysuit. Could you please let us know when you get one if your daughter likes it or not. I had my mother shorten the crotch part of the spinecor bodysuit as it seemed too long on my daughter, and it was always shifting around on her bottom! It seems to be better - less complaints anyway! Yay!

Stacy

[jillw]

Jenmom, the thigh bands bothered my daughter a little also, but she got used to it after a couple/few weeks. I have read about some people applying moleskin to help, but that would need to be replaced when the brace is washed, I believe, so it's a less than ideal solution. I've read about "toughening" up the skin in sections that talk about hard braces - to speed up the process of toughening up the skin they suggest applying rubbing alcohol. And whatever you do, don't apply cream which will soften the skin. We didn't do any of that since Katie seemed to adjust to it fairly quickly, but just some ideas that others have found useful...

Laura, good luck on the 4th!!!! We have an appointment coming up soon too (on 10/9) and I am well into my worrying mode. How nice that you can get a saturday appointment.

[jillw]

OK, huge favor to ask those of you who have successfully dealt with insurance companies in the U.S. I am FINALLY getting started on trying to get reimbursed for at least some of my spinecor related costs. (my younger son started full day school and my hours at work are less in light of the current economic environment so I FINALLY have a little bit of time)

Anyway, I have Blue Cross and I am filling out their insurance claim form. My problem is on the bottom there is a section where there is line items for the procedures/services/supplies. There is something called a "CPT" code that would be associated with each of them. Since Dr. Rivard isn't dealing with the U.S. insurance companies, they don't print out those automated receipts that include all that info like drs in the states do.

For those of you who get spinecor in the US, would you mind pulling up some of your receipts and telling me which CPT codes & descriptions were on the receipts you got from your doctors?

For those going to montreal who successfully got coverage, could you peak at the forms you submitted and see what CPT codes you used? I was told blue cross would deny coverage if I just gave a description without a code (and the receipts i have only give a description). Well actually, I know the code for the spinecor brace itself is L1005, but I have the following other "line items" that require a CPT code:

-Xrays - apparently there are a ton of CPT codes for xrays, I'm guessing it might be 72069 which apparently is scoliosis radiologic thoracolumbar, but the xrays are actually of her entire spine so I don't know if a different code should be used.

-The doctors visit with Dr. Rivard/Coillard. Also do you use the same CPT code for the initial visit as you do for subsequent followup visits?

-The "clinic" fee paid to St. Justine's hospital related to getting the xrays.

-has anybody tried to get some sort of reimbursement for the bodysuits?

If you prefer not to post on the boards you could send me a PM. I am desperate for any codes anyone can provide-even if they don't get treatment in montreal. thanks!

[CAmomof2]

JillW,

Sorry I do not have any codes for you as our family does not have insurance and the Canadian healthcare does not cover the brace. We get the xrays and Dr's visits paid. Anything else is out of pocket for us!!! Ouch!!

[RugbyLaura]

Thanks for the good wishes Jill. :o I got the date wrong, it is actually the 3rd. No Saturday appointments for us either!

Stacy, Hi! Immy has not had major problems with rubbing. In the early days it was actually the crotch straps that caused the most discomfort; she has never had any problems with the thigh straps. We did what we'd been told & just stuck with it until her skin hardened up.

Immy now wears the brace with nothing under it apart from a pair of short-style underpants. She was getting quite hot at school with all the layers (insists on wearing sweatshirt to hide brace). She now just pulls the shorts to the side to go to the loo; much quicker than fiddling about with all those poppers!

When Immy did have a problem with chaffing on her side we were told to use wound dressings until it had healed.

Hope all is going well.

[MJB]

my daughter is standing SO crooked now but to the opposite side of her curve and it is really concerning me. Her rib cage is sticking out more on that side too and her breast area is now uneven, so when she does develop she will probably be uneven. We have our appointment with Dr. Rivard coming up in October but I worry that I will get the same "it's all normal" response from him.

I do not think that this is normal though, it concerns me so much!

Any suggestions or advice? I need someone to ease my mind because I am so worried!

[RugbyLaura]

Marlowe,

During the first 6 months of wearing the brace we noticed a big change in Immy's posture; we were quite worried about it at the time as it looked (although she assured us that it wasn't) very uncomfortable and the uneven shoulders were very noticable. Over time she has adjusted to the brace and now you would not know that she is wearing it. The only time that the shoulder tilt is obvious is when she has grown, just before it needs adjusting.

I know it's hard, but try not to worry. My husband is always reminding me that we've signed up for this course of treatment & we need to stick with it & trust the professionals. (He normally tells me this very LOUDLY when I allow extra out of brace time for dance rehearsals & performances!).

Laura x

[jillw]

Marlowe, I do recall being concerned if I was putting the brace on katie correctly because of the way her body was pulled (and yes, it did almost look like she had a bit of a curve going in the opposite direction). I took several digital pictures of katie from several angles wearing her bodysuit and brace and emailed them to Dr. Rivard stating my concerns. He said everything looked fine and when we went for her appointment a few weeks later the xray reading were good. I guess there are 2 issues - should she look like this? to address that you could send pics to dr. rivard while you wait for your next appointment. then the second question is, if he says everything is allright, do you feel comfortable with that? I can't answer that second question for you but at least she has an appointment coming up soon so you can see how her curve is responding. do you go in early october or late october? if you are very concerned could you maybe move your appointment up a week or two? (or if dr. rivard is concerned based upon the pics maybe he'd call you in a bit earlier?) Good luck!

That's weird, in my previous post I see that the name of my insurance company was magically highlighted and has some sort of a link attached to it. I assume it's some sort of program that advertisers use? weird...

[RugbyLaura]

Magical highlighting didn't happen to me...

[jillw]

Laura, Cara pointed out to me that it was something specific to my computer (kids playing video games on computer and somehow some advertising software got installed - but thanks to her I figured out how to make it go away!) Anyway, good luck tomorrow! Let us know how it goes.

MJB, did you ever get the snap replaced (the one that kept coming unsnapped)? Just wanted to let you know, one of katie's snaps broke last night during soccer practice. I went to a shoe repair place this morning and they had the snap replaced within 5 minutes. I brought my own snap (I had a couple extras) and the shoe repair place didn't charge me a cent - which was nice of them. I'm guessing that a repair wouldn't be more than $3-4 if they did provide the snap and if they did charge you. The guy at the shoe repair place said the snap I had was a pretty standard size used in the industry so I'm guessing it shouldn't be hard to find a shop with the proper size snap.

Of course, because of the timing of the broken snap (right around 5:30pm and by the time i got to a shoe repair shop they were closed), Katie was out of brace for almost 16 hours. I hate for that to happen so close to our next appointment when I'm already feeling nervous and superstitious.

[RugbyLaura]

Not great news.

No xrays at this visit (only xray 6 monthly) but scoliometer showed a significant increase in rotation. WOB measurement went from 8 to 13 degrees. With brace from 6 to 9.

Not a total disaster but a definate sign of change after 15 months of stability.

Brace adjusted and is now a little more uncomfortable!

Laura

[MJB]

Thanks everyone!

Jill Halle is crooked to the opposite side of her curve when the brace is off and her ribs stick out too, i can understand when the brace is on but i don't think she should be crooked to the other side now. i am so confused.

[emarismom]

Laura,

I am so sorry that you didn't get better news. Maybe next time when an xray is done, you will find that the change isn't as significant as it seems.

How old is Immy now? Have you noticed if she has been growing rapidly over the last few months?

I'm taking Emily to Atlanta this coming Tuesday, I'll post how it goes.

Michelle

[RugbyLaura]

Michelle,

Immy is 11 years, 3 months. She has not grown significantly; about 1.5cm in 3 months. This steady growth is apparently what we hope for in a child with scoliosis - problems are magnified during periods of rapid growth (as much as 1cm per month). She's not going to be very tall; I am 5'3" (with socks on!) and her dad is 5'9" (and a bit!). She is currently just over 4'8".

Immy had new straps in June and I had noticed that the brace seems to have been a lot more comfortable recently. Mr Mills has adjusted straps, particularly #3 & #4 and she now has the pronounced shoulder tilt back.

He explained a little more about what we are trying to do with the brace. I hesitate to write it here as I might not put it exactly as he said it & could induce an adverse reaction from certain quarters...

Basically - Immy has a genetic anomaly which has made one side of (a) certain vertebra(e) grow faster than the other. This has caused a lateral curve to form in her spine which also causes rotation and distortion as her ribs cannot grow normally given the curve. The spinecor brace is (this is where I get a bit fuzzy) attempting to correct (?!) the curve by putting pressure on the growth plates in such a way as to stimulate the lazy side & supress the faster growing one.

Having said this, I must repeat that we do not expect Immy to aviod surgery - given a 38 degree curve in a 9 year-old this was always a bit too much to hope for.

Thank you for your support.

Laura x

[emarismom]

Laura,

All is not said and done yet. Immy may somehow avoid surgery. The positive side is that maybe the brace has bought Immy sometime to grow prior to any surgery. That has always been my hope with Emily (diagnosed at age 5 with a 28 degree curve:eek:). I have just been praying to buy time so that if she eventually does need another surgery, she will at least be almost fully grown. I'm only 5'0, so I know she won't get too tall either.

I will keep you in my prayers.

Michelle

[jillw]

Laura, I'm sorry you didn't get the best news. Hopefully the adjustments to the brace will help. When do you have the next xray? Funny - I hadn't thought to ask about the scoliometer reading and they hadn't proactively told me (at least after the initial appointment when she was about an 8). Interesting about Dr. Mill's explanation - but it does make sense. My understanding is that vertebral stapling is working to a certain extent under the same theory (pressure on one side of the growth plates could slow down growth on that side and as the vertebrae grow faster can help straighten a curve).

MJB, Katie isn't out of brace much so I don't get to see but sometimes she appears to curve the opposite way when out of brace also...but then when I really focus on her spine, it doesn't seem to be curving to the opposite side...it's almost like her body had adjusted to having a right side curve to if you partially straighten out the curve itself, the body seems to curve a little to the left? I don't ever know what to think of all this! I can't wait until we go thursday to get the waiting over with! When do you go?

[leahdragonfly]

Hi Jill,

Good luck Thursday with Katie's appt, I know you have been worrying about this appt, so I hope everything turns out better than expected. I always worry so much for the weeks leading up to Leah's appointments, too. I saw a post a while back where someone had coined a term for this, but I can't remember it now.

Let us know how it goes when you get a chance.

[MJB]

Laura, I'm sorry you didn't get the best news. Hopefully the adjustments to the brace will help. When do you have the next xray? Funny - I hadn't thought to ask about the scoliometer reading and they hadn't proactively told me (at least after the initial appointment when she was about an 8). Interesting about Dr. Mill's explanation - but it does make sense. My understanding is that vertebral stapling is working to a certain extent under the same theory (pressure on one side of the growth plates could slow down growth on that side and as the vertebrae grow faster can help straighten a curve).

MJB, Katie isn't out of brace much so I don't get to see but sometimes she appears to curve the opposite way when out of brace also...but then when I really focus on her spine, it doesn't seem to be curving to the opposite side...it's almost like her body had adjusted to having a right side curve to if you partially straighten out the curve itself, the body seems to curve a little to the left? I don't ever know what to think of all this! I can't wait until we go thursday to get the waiting over with! When do you go?

We go on the 16th! Let me know when you schedule your next appointment for, it would be cool if we were on the same day, we could get the girls together!

[mariaf]

Hi Jill,

Good luck Thursday with Katie's appt, I know you have been worrying about this appt, so I hope everything turns out better than expected. I always worry so much for the weeks leading up to Leah's appointments, too. I saw a post a while back where someone had coined a term for this, but I can't remember it now.

Let us know how it goes when you get a chance.

Gayle,

I can't take the credit for it, but I believe the term is "the dreaded x-ray day feeling". As soon as I heard it I just "knew" what was meant. We all do.

Jill,

I'll be thinking of you on Thursday and hoping for some really good news!

[christine2]

Jill
Good Luck Thursday!!!

We are also heading up for a recheck. We will see Dr Rivard Tuesday 10/14. I am very nrvous, we had to miss our 5 month appt so it has been 8 months without a re check. My daughter has grown a ton.

We are going to make a vaca out of it. We are staying in Ticonderoga NY 1 night then in Old Montreal Spring hill suites for 2 nights. I can't remember who recommended the hotel but Thanks, it looks very nice. We are going to check out the Science Center and may visit the I MAx theater. Has anyone been to the I Max? Is the movie in french or English. The schedule appears to have both.

I have a feeling my daughter is going to need a new brace, hers is tattered. she has had the same one for over 2 years now. I am shuffling around bank accounts this morning just in case.

[jillw]

Thanks everybody - I'll let you all know how it goes and I look forward to hearing how it goes for the rest of you who are going in during the next couple weeks. Hopefully we will all have good news to share.

Christine, we're the ones who like to stay at the springhill suites - i hope you enjoy it there! This will be an in and out trip so we'll just stay at the Ruby Foos (if there is availability) to save time and money the night before. Speaking of which, I better go book a hotel!

Jill

[emarismom]

Hi Everyone,

Yesterday I took Emily to see Dr. O. We opted not to do an xray until March, as she recently had an out of brace with the ortho. Her brace was readjusted. She has grown an inch and her rotation was a little better from 7 to 5 now. I hope everyone is doing well.

[mthorburn]

Hi, I am considering a couple of alternatives to rigid bracing for my newly diagnosed 9 year old daughter. One of the alternatives is the SpineCor. Some studies (including those from the makers of the brace) certainly sound very positive. But, I have not seen any discussion of the following cite I found on Scoliosis.com.

This abstract seems to indicate that rather than being perhaps better than rigid bracing, the SpineCor was less effective with this study. I know all studies are subject to being interpreted and misinterpreted, however one wishes.

Nonetheless, while I am very enthused to read all of the positive press and person testimonials about the SpineCor, I am trying to sort it all out and was wondering if anyone else has seen this and has any comments on it. Not trying to cause any trouble pro or con on the SpineCor as I am genuinely hoping that it works since I am STRONGLY considering it for my very active daughter!

Lisa
Newly Diagnosed 9 year old daughter
Looking into alternatives to rigid bracing (VBS? SpineCor?)

---------------------------------------------------------------------
"The Effect of Rigid Versus Flexible Spinal Orthosis on the Clinical Efficacy and Acceptance of the Patients With Adolescent Idiopathic Scoliosis.
Deformity

Spine. 33(12):1360-1365, May 20, 2008.
Wong, Man Sang PhD *; Cheng, Jack C. Y. MD +; Lam, Tsz Ping FRCS(Ed) +; Ng, Bobby K. W. FRCS(Ed) +; Sin, Sai Wing MPhil ++; Lee-Shum, Sandra L. F. PD [S]; Chow, Daniel H. K. PhD *; Tam, Sandra Y. P. BSc(Hons) *
Abstract:
Study Design. A prospective study on the comparison of the clinical efficacy and patient's acceptance of the 2 orthotic management methods.
Objective. To compare the treatment effectiveness and patients' acceptance of the flexible spinal orthosis, SpineCor with that of the rigid spinal orthosis for the patients with moderate adolescent idiopathic scoliosis.
Summary of Background Data. The patients' acceptance to the rigid spinal orthoses is always a concern as it could greatly affect the clinical outcome. SpineCor is a relatively new design for tackling those inevitable drawbacks found in rigid orthosis. However, there was no study to compare this design with the conventional method regarding their treatment efficacy and the patient's acceptance.
Methods. Forty-three subjects with moderate adolescent idiopathic scoliosis were randomly assigned to the SpineCor group (S group, n = 22) and rigid orthosis group (R group, n = 21). Their survival rate in the first 45 months of intervention was studied. The subjects' acceptance to the orthoses was evaluated by a purpose-designed questionnaire, which was administered in the 3rd, 9th, and 18th months of intervention.
Results. In the study period, there were 68% of the subjects in the S group and 95% of the subjects in the R group did not show curve progression. Significant difference (P = 0.046, by Fisher exact test) in failure rate between the 2 subject groups was found although the 2 groups had similar responses to the questionnaire.

Conclusion. The current study showed that the failure rate of the SpineCor was significantly higher than that of the rigid spinal orthosis, and the patients' acceptance to the SpineCor was comparable to the conventional rigid spinal orthosis.

Hi There,

I am also trying to research the Spinecor as a possible alternative to rigid bracing. When I asked my Doctor about it his response was that in all studies where the authors of the study did not have a financial interest in it's success, the Spinecor failed. He was also involved in a trial in New York and reported that the kids hated it.

This has confused me, as it seems that there is a lot of positive stuff out there about the Spinecor as well. I wonder if there is anyone out there who has tried it and been unsuccessful?

Mark

[RugbyLaura]

Hi Mark,

I know of plenty of people who have tried Spinecor and been unsuccessful, but then again I know plenty of people who have tried rigid bracing and been unsuccessful too.

Of a group of 4 girls who met up last summer via a UK forum my daughter is the only one not on the surgery list; she was the only one wearing Spinecor - but she is also the youngest...

As for the kids hating it - I am stunned! Spinecor is really very wearable and soooooooo much easier than the alternative! We have both and Immy much prefers Spinecor - there really is no contest in terms of comfort.

As for those studies... Well, the ones that I've seen that have unfavourable results for Spinecor have either been discredited (as the above has been) or have their own vested interests.

Who knows?? Good luck with your decision, we have been very happy with ours.

Thinking of you tomorrow Jill. x

Great news Michelle! Totally envious of Emily's rotation figure.

Laura

[christine2]

Mark
We have all been where you are at right now. It is all very confusing and stressfull. There is no crystalball. What ever brace you choose, it's success will depend on compliance. Some of us have seen with with own eyes the benefits of Spinecor, some have seen the failures, you can only do your best, research then make a decision. Make sure you keep in mind that some docs and chiros are not fully trained on using Spinecor. Those are the ones that use it when contraindicted just for the $. So I feel that they are flooding the research with false results.

We are very happy with our choice and pray for continued success. Our goal is to keep my daughters curve below 20 so she can hopefully avoid surgery. If we can not avoid surgery then there are a tone of people living normal lives after surgery.

I would bet that if you compared the brace wearing population you would find that the Spinecor Brace is much more appealing.

It is a tough position to be in. We all feel for you!!!

[WNCmom]

Mark:

My 13 yo son has worn SpineCor for the past year, and is still wearing it, even though he is scheduled for surgery on Nov. 13. He first wore a Boston brace for 6 months (with great compliance), which did not work. By the time we switched to SpineCor as a last ditch effort, his curve was above 40. We know now that probably no brace would have worked, but we don't regret trying. I suspect we started too late for it to have any effect, in any case.

But I want you to know that although he would have of course preferred to wear no brace at all, he was so grateful we made the switch, because compared to the Boston, it was easy to wear. It allowed him to go to summer camp for a month, participate in school phys ed and sports with a minimum of hassle, and eat full meals without discomfort. And he will arrive at surgery with his muscle tone intact.

I have read on this forum of many children who started with SpineCor at a younger age and/or lower curve, and often they get great results with both curve reduction and rotation. Of course they have much growing to do, but they are delaying the advance of the curve at a young age. My son is still a Risser 0, but his curve is such that surgery cannot be delayed. I wonder what would have happened if we had started with a SpineCor. We'll never know.

[emarismom]

Mark,

I have been reading this forum, and specifically the Spinecor thread, for well over two years now. In that time I have seen several children who wore the Spinecor brace, and still ended up needing surgery. There are many different reasons for this that have been discussed, most often it seems the brace has not been successful with children who have larger curves to begin with.

Many of the kids who seem to be having success with the brace are younger, with smaller curves. It may be that these youger children, including my daughter, will eventually progress to surgery. It may also be that these girls may never need surgery. I even know of one young girl who was braced for 1year, had significant improvement, and is now brace free at 10 or 11 years old.

We really don't "know" if the brace will work. No matter how many people we talk to, nor studies we read, or any other factor at this point in time will give us as parents the answer we all want, that our child will be able to avoid furture surgery.

At this point my daughter has been in a Spinecor brace for about 1 1/2 years. Overall, it has been very easy to live with this brace. Are there moments when she *HATES* her brace? Of Course! There are even more moments when I HATE her brace, because I feel like I am making her suffer through wearing it and I don't even KNOW that it will work.

I have kept her in it, regardless of all of this because at this point in time, I feel it is my best option, as opposed to a rigid brace (not an option in my mind) or a wait and watch option (which I also have issues with).

My ortho is also not thrilled with the fact that all of the studies on the brace have been conducted by the makers of the brace. Unfortunately, this is what we have to work with at this time. I can also flip that same coin and say "my daughter is a potential money maker for the ortho", so he to has an interest in her especially if she progresses to surgery". If the Spinecor brace were to be proven successful, where would that leave scoliosis surgeons. (I really do like my daughter's ortho, he is great, just to show that there are many ways to look at it)

We can only take all the information out there and try to decide which option best fits into each of our particular situations. What is right for me, may not be right for somone else.

[CAmomof2]

Mark,

I feel for you as we were recently in your shoes so to speak as to what to do. Our daughter is 9, has a 26 degree curve and her ortho's advice was to wait and watch her for a bit as she is so young and has alot of growing to do so she will probably progress to surgery anyway. Ok, this is where Mommy mode set in - I just could not "wait" for progression - if I did this, I would feel bad the rest of my life for not trying anything (be it boston bracing, spinecor etc.) This is not saying that she may never progress, but at least we have tried something.

Anyway, she is in the Spinecor brace now for about 2 weeks. The 1st week was very hard - she had to get used to going to the bathroom etc. with it on. This week is sooooo much better. She is very good about not going over her "time out" of brace, and doesn't seem to mind it that much. Yay!

We go back to Dr. Rivard later this month for a check-up, so hopefully it is doing its thing. I guess I should tell you that her curve went down 9 degrees from 26 to 17 when she 1st put on the brace. And her scoliometer reading went from 7 to 4. This was encouraging to us as we went to the appointment not even sure that we would even bother getting this brace.

I wish you and your family all the best no matter what decision you make. It sure is a stressful time.
Take care, Stacy (another newbie) :)

[jillw]

Hi all, We had katie's appt yesterday - she's pretty much stable which is a relief...her curves actually flipped...what had been 6/3 is now 3/6. Dr. Rivard said it's basically the same curve...a slight deviation in the way one stands while being xrayed could account for it. Anyway, we can finally exhale...she grew about 1 1/2 inches since the last xray also (this is our first experience with her having growth while wearing the brace...she didn't really grow much the first 6 months she wore it)

gotta go but wanted to update you

[RugbyLaura]

That's great news Jill!

Thanks for the update.

Laura

[RugbyLaura]

Trying to find the post about the brace moving but can't. Am probably being a bit dense but am in a hurry so will post my answer here -

Immy's brace base did move and I posted about it on this thread (about a year ago). I was reassured by the good folks here that this is pretty normal. When Immy puts her brace on she tends to put it a little off center to allow for the movement. If in doubt though, speak to your brace guy.

Regards,

Laura

[mariaf]

Hi Jill,

You could not ask for better news than that - I am VERY happy for you!!!

[Pooka1]

Hi all, We had katie's appt yesterday - she's pretty much stable which is a relief...her curves actually flipped...what had been 6/3 is now 3/6. Dr. Rivard said it's basically the same curve...a slight deviation in the way one stands while being xrayed could account for it. Anyway, we can finally exhale...she grew about 1 1/2 inches since the last xray also (this is our first experience with her having growth while wearing the brace...she didn't really grow much the first 6 months she wore it)

gotta go but wanted to update you

Wow that's pretty good! The brace seems to be using growth as a tool against curve progression as they say.

[WNCmom]

Jill--

Fantastic news--congratulations! You must be so relieved and happy.

Mary Ellen

[Izzy's Mom]

Jill, that's wonderful news! It's awesome that she had a growth spurt and still showed improvement.

Laura, thanks for info. The movement had us worried.

I'm still having a bit of trouble finding the exact "bodysuit.com" website. Several results pop up and I was wondering which site had the best suits.

thanks
Theresa

[Jenmom]

http://www.bodysuit.com/bodreg.html

This is the one we use.


Jill, that's wonderful news! It's awesome that she had a growth spurt and still showed improvement.

Laura, thanks for info. The movement had us worried.

I'm still having a bit of trouble finding the exact "bodysuit.com" website. Several results pop up and I was wondering which site had the best suits.

thanks
Theresa

[Izzy's Mom]

Thanks Kathy! I thought this was the website but wasn't sure. Everytime I tried to order a childrens bodysuit, it wouldn't allow me to choose a color or size. Hopefully I'll have better luck this time around.

[jillw]

Thanks everyone - I'm so glad to have that appointment out of the way! Now I may have another fewm onths before I start the next cycle of worrying myself into extra gray hairs! :)

We just got home (we went away for the weekend on our way back) and I am inundated in mail/laundry etc, but I will post later...I did ask Dr. Rivard for his thoughts on Dr. Wong's study and will post more later when I have a bit more time.

[leahdragonfly]

Hi Jill,

I am happy to hear that Katie's appt went so well! I know the feeling (we all do I'm sure!!) of relief once a successful appt is concluded, and can totally relate to the feelings of dread that start to return once the next appt gets closer. I feel SO mental about all of this sometimes!

Leah's next appt won't be until January (she will be 7 by then too), so I am trying to busy my mind by concentrating on her school work and activities and not dwell on her back too much. Sometimes I am more successful with that than other times...

Take care,

[Erica B.]

Hi Im new here and still learning how this site operates, but I'd love any help. I live in Maine. My 7 year old daughter was diagnosed with 16T/17L in June 2008. My DO said wait and watch. Well, it took me 4 months to realize I need to do something. I really feel pressure to get her into a spinecor brace asap. She is scheduled for another x-ray in 2 months, but I don't want to wait that long. There is family history with her grandmother and great aunts. People on this site seem to be going right to Montreal, and not messing around in the USA when it comes to spinecor. Im looking into that right now, but would appreciate any insight. Any other helpfull therapies also would be great . Thanks Erica

[Izzy's Mom]

Hi Erica and welcome! I know what you are going through and it's a difficult decision to make. We recently put our 7yr. old (Isabella) in a spinecor brace. We chose this brace because we felt it had positive results and would work best with Izzy's active lifestyle. We went to Montreal to Dr. Rivard because there are no doctors in our area that fit for the spinecor brace and we would have to travel anyway, so why not see the best ortho possible. It's only been a couple of weeks but we our pleased with th results so far. Isabella has adjusted wonderfully to her brace.

If you want to you can email or call Dr.Rivard to get his opinion. This is what we did. Here is the info if this is what you decide to do.
crivard@justine.umontrea.ca 514-345-2344

We wish you the best of luck!

Theresa

[Jenmom]

Hi and welcome! If you don't want to wait and see with your doctor you can always go it on your own. This group does Spinecor http://www.scoliosisspecialists.com/ and you could also see an ortho on your own and pay out of pocket. We were going to do that until our doctor found an ortho trained that took our insurance. If you are close to Ca., Jeremy Livingston at the Hanger group in Downey is trained with the Spinecor brace. My daughter just loves him and if our insurance would not have covered it he said the cost would have been around $2100, the scoliosisspecialists charge around $4000. But if you can go to Canada that would be going staight to the best which is always good.

[CAmomof2]

Hi Erica!
I'm new here too, and we are neighbours - we live in New Brunswick. :)
Our daughter was just put in spinecor on Sept 25/08 in Montreal because they are the closest to us - although 9 hr drive one way!! She is doing very good in the brace after a bit of adjustment time. We go back to Montreal on Oct. 23 to get her one month check-up. This site is great for answering questions etc. Hope it helps you and your family. Stacy

[christine2]

Hi Everyone

This has to be quick, we just got home from our appt.


I feel like we just won, not the lottery but the powerball lottery. My daughter was measured 0 with the scoliometer and 1 degree on x ray. Dr Rivard said "it might as well be 0"

I am not sure I will be able to sleep tonight, I am soooo excited.

[Izzy's Mom]

Christine that is AMAZING news!! We're so happy for you. I don't think I'd be able to sleep either. This is better than the powerball. It's the best news anyone could have wished for!

Theresa

[jillw]

Holy moly - you must be feeling high right now!!! That is such great awesome wonderful news. Hooray! I think I would be up all night calling everyone I know with the good news if I were you. How nice to lose sleep out of excitement instead of worry! Just curious, what was her rotation as measured on the scoliometer when it was at its highest point?

[CAmomof2]

Christine,
Congratulations on the wonderful news!!! Better than any lottery! Stacy

[Pooka1]

That's probably the largest decrease of a curve I have read about yet outside of surgery.

Congratulations!

[leahdragonfly]

Wow, you must be so happy about the one degree report! Was that in-brace or out-of-brace? Does that mean your daughter gets to throw away the brace, or is she too close to the pre-adolescent growth spurt (sorry, I'm not familiar with the spinecor protocols)?

Congratulations,

[emarismom]

Christine,

That is AMAZING!! Congratulations!

[mariaf]

Congratulations Christine!!

I, too, was wondering if this means no more brace - or a reduction in hours. I mean one degree is not only amazing, but it isn't even considered scoliosis!!! :)

[christine2]

The x rays are in brace. I don't anticipate an out of brace x ray at all. From what I understand the in brace will be the same as the out of brace. I don't know what the scoliometer reading started at. That was over 2 years ago and I had no idea of the importance of it. We are going to keep her in brace straight thru to puberty (perhaps a bit more relaxed about it until her growth spurt). My daughter has no problem wearing it so we are not going to mess with success right now. I am anticipating the curve increasing during her growth sput. My goal is to keep it below 20.

[2kids]

Christine,
Congratualtions on the tremendous results for your daughter!

You said the in-brace and out of brace x-rays would be the same with spinecor. Why? Is there something different about the spinecor brace that the curve holds with the same measurement in or out?

Just wondering how it works.

-Brenda

[christine2]

I am not 100% sure of the reasoning behind the in/out of brace x rays. My understanding is that because it is a 3 dimensional, dynamic brace the muscles around the corrected curve are able to stenghthen and therefore hold the correction. With some of the braces the muscles actually atrophy.

Perhaps someone else can shed some more light on this subject.

[mariaf]

My understanding is that because it is a 3 dimensional, dynamic brace the muscles around the corrected curve are able to stenghthen and therefore hold the correction.

Thanks for that additional information, Christine.

I guess what some of us are still trying to understand is - even if the muscles "in theory" are supposed to strengthen enough to hold any correction, wouldn't an occasional out-of-brace x-ray (just to be sure that this in fact was happening for a particular patient) make sense?

For example, with VBS the staples "in theory" should hold any correction over time. But x-rays are still performed because as we all know, with ANY form of treatment, there is never a 100% success rate - and the doctors would want to catch those few cases (those that might progress regardless of any treatment) sooner rather than later.

I'm sure that in your daughter's case, with such a small (non-existent!) curve, it would be very UNlikely for her to progress - but I'm talking in general and about larger curves. Perhaps, as you say, someone else can shed more light on this. I'm sure those parents who have experience with the Spinecor would probably understand it better than I do - and I would really love to understand how it works.

Thanks.

[jillw]

MJB, How did things go at the appointment last week?

Christine, that's interesting about the in brace and out of brace curve being the same. My understanding had been to expect a higher out of brace curve than in brace - maybe it's different because your daughter has been braced for the full 2 years they say is required at a minimum?
My understanding was that with hard braces, in most cases whatever correction was obtained in brace goes away over time once brace wearing is stopped. Therefore a "success" would be anyone whose curve after a year or so out of brace is within 5 degrees of the initial pre-brace curve. With spinecor, the same parameters are also considered a success, but they have been finding that additionally, there have been people who after a full 2 years out of brace had been maintaining a correction. Not everyone, but enough to give us all hope!

Also, I wanted to comment on the Dr. Wong study that was discussed earlier. When I was in Montreal I asked Dr. Rivard about it (and actually more about the rebuttal which to me seemed to have some valid points but to be a little over the top in other areas). Too summarize, when preparing research for publication, the researchers will obviously put together the best package they can. However, when you look at the actual research report, the picture of the girl they put in spinecor shows that a major piece of the brace is missing=>The thigh bands which are important for stabilizing the brace weren't used. One wouldn't expect good results without a stabilized base. As far as some of the things in the rebuttal which suggested if you don't wear the spinecor bodysuit or if the bands aren't replaced every 6 months or so than results will suffer, Dr. Rivard doesn't agree. The bodysuit is not a part of the brace, just meant to make it easier for those who choose to wear it. Regarding replacement of straps, he feels every 6 months (and even 12) generally isn't necessary (depending on the specific case of course) and would only drive the cost of bracing up. There is more - but that's the main idea for those of you who were wondering... (keep in mind I am paraphrasing what was said to me...and while I believe I"ve got the main ideas correctly, it's not a direct quote. so caveat!)

[jillw]

I started the previous post earlier in the morning before the other posts and then got called away on phone calls and such (thankfully nsf doesn't time you out). I see the subsequent posts....

Maria, I'm not entirely sure, but I believe the reason out of brace xrays aren't regularly taken is for a couple reasons....The protocol states that it takes 2 years for the brace to complete it's cycle (many still would have to wear the brace longer based on age and years of growth, but approx. 2 years would be the minimum the brace would be worn by most in order to try and get the in brace correction to actually hold after bracing stops). In order to get an accurate out of brace xray, the child would have to go a while out of brace....don't quote me, but I think someone posted that the doctors said a full week or so would be necessary to get a meaningful measurement. it may be that since the brace is softer and engages the muscles more, that it takes longer than the 48hours protocol used for hard braces to "relax" the curve enough to get a true idea of what the out of brace xray measurement is. While we've only been a year in brace, others have posted that they did or would be getting out of brace xrays after 2 years. I suspect that they don't want the children going without a brace for a full week before the 2 years is up. in their experience a curve progression is accompanied by an in brace progression. When patients so significant in brace progression, they WILL have out of brace xrays taken. I think they are also trying to manage radiation exposure (maybe that's not their concern, but I know it's mine!) They do need in brace xrays as part of the proper fitting and knowing if it's holding the spine in the position they want. I don't think that 2 sets of xrays every 5 months would be ideal - especially since they also seem to get many of the JIS patients who are facing way more years of xrays than AIS kids. Just my theory based upon patching together things I've read, been told by the drs., heard that others were told by the doctors. I am not an expert!!!!!!! But next time I'll ask that question specifically.

I think that the issue of getting periodic out of brace xrays might be more critical for those with larger curves and/or for those who would change their course of treatment. In other words, if somebody plans to continue to use spinecor even the curve is progressing and until fusion surgery is required (with the hopes that it never is required) than knowing the exact out of brace measurement isn't as critical(which is the case for some...for example some of those with larger curves had already tried "mainstream" hard braces without success and are using spinecor as a last defense). Or if a child had relatively small curves to begin with, say 20 degrees, and is getting an inbrace correction that is pretty stable, then out of brace xrays aren't as critical. On the other hand, if somebody plans to switch from spinecor to a hard brace or other treatment BEFORE it gets to the point of fusion, then occasional out of brace xrays would be more important. ESPECIALLY if they are experiencing a trend of increasing curves in brace. In that case, it would make sense to go brace free for a couple days and get an xray for one's own knowledge and decision making progress.

Just my 2 sense.... (again, I'll ask specifically about that issue next visit...although, God willing, that won't be for a while)

[mariaf]

I think that the issue of getting periodic out of brace xrays might be more critical for those with larger curves and/or for those who would change their course of treatment. In other words, if somebody plans to continue to use spinecor even the curve is progressing and until fusion surgery is required (with the hopes that it never is required) than knowing the exact out of brace measurement isn't as critical(which is the case for some...for example some of those with larger curves had already tried "mainstream" hard braces without success and are using spinecor as a last defense). Or if a child had relatively small curves to begin with, say 20 degrees, and is getting an inbrace correction that is pretty stable, then out of brace xrays aren't as critical. On the other hand, if somebody plans to switch from spinecor to a hard brace or other treatment BEFORE it gets to the point of fusion, then occasional out of brace xrays would be more important. ESPECIALLY if they are experiencing a trend of increasing curves in brace. In that case, it would make sense to go brace free for a couple days and get an xray for one's own knowledge and decision making progress.


Thanks, Jill!!

That makes a lot of sense - I definitely can understand and agree with your statement that out-of-brace x-rays become less critical in cases where someone does not plan to change their course of treatment regardless - or in cases where the curve is relatively small.

I was actually thinking of those with larger curves, and cases where, as you say, one may consider taking other action should an out-of-brace x-ray indicate progression. As you stated, there are times when knowing what the out-of-brace x-ray showed might play a role in the decision-making process.

To state the obvious - it's always best to catch progression early. For example, in a case that is progressing towards fusion levels, one would prefer having fusion before the curve reaches the 50's or 60's where correction would be more difficult.

I'm sure the doctors take all this into consideration and monitor each child accordingly. As in all things, common sense plays a role I'm sure.

And I CERTAINLY agree with you about limiting radiation exposure whenever possible! :)

[christine2]

Thanks Jillw

Well said. I would also like to make it clear that the docs in Montreal are very open and honest with parents about the abilitys of the Spinecor. They will be the first to say the the brace works best on young, small curves.

[RugbyLaura]

To state the obvious - it's always best to catch progression early. For example, in a case that is progressing towards fusion levels, one would prefer having fusion before the curve reaches the 50's or 60's where correction would be more difficult.

For anyone who's not 'heard' me say this before...

Imogen's consultant was very upfront with us regarding the likelihood of her progressing to surgery (statistically not far off 100%). His main motivation for using Spinecor is to maintain flexibilty of the spine. He believes that rigid braces actually encourage the curve to become fixed therefore making surgical correction more difficult. He said that he would be happy (Ok, bad choice of word, but he used it!) for her curve to get into the 60s or even 70s before he operates, just as long as it remains flexible thus enabling him to achieve a good correction. He believes it to be very important that she is as close to fully grown as possible before he operates.

I still find it hard to understand why people are so hung up about out of brace xrays. The children are wearing the brace for 20 hours a day. What the curve would do without it is irrelevant. How long would you leave it off? 5 hours, 3 days, 2 weeks, 6 months??

I trust our consultant to do the right thing for Imogen and feel very fortunate - to be constantly doubting and worrying must be awful!

[Pooka1]

The protocol states that it takes 2 years for the brace to complete it's cycle

Does the protocol state what this is based on??

sharon

[mariaf]

He said that he would be happy (Ok, bad choice of word, but he used it!) for her curve to get into the 60s or even 70s before he operates, just as long as it remains flexible thus enabling him to achieve a good correction.

True, some larger curves may remain flexible, but unfortunately many do not. Often, a larger curve becomes more rigid (not always but a lot of the time) - at least that has been my understanding from several orthos I have spoken to over the past 7 or 8 years. I assume that's why most of them don't want to see a curve get too high if they can catch it earlier.

Of course, your ortho's approach makes sense IF he knows that a particular curve is remaining flexible and he'd like to attain more growth. Everyone must weigh the variables in their child's particular case. As we all know, no two cases are the same.

I honestly don't think any of us who asked questions about out-of-brace x-rays are worrying or doubting (and I'm not sure why you interpreted it that way) - but rather we were just discussing and sharing our thoughts with one another, as we enjoy doing here. In fact, it's a great part of the forum to be able to bounce thoughts and ideas off each other and to gain a better understanding of treatment options based not only on our own experience, but on that of other parents as well.

[RugbyLaura]

I honestly don't think any of us who asked questions about out-of-brace x-rays are worrying or doubting (and I'm not sure why you interpreted it that way) - but rather we were just discussing and sharing our thoughts with one another, as we enjoy doing here. In fact, it's a great part of the forum to be able to bounce thoughts and ideas off each other and to gain a better understanding of treatment options based not only on our own experience, but on that of other parents as well.

Without wishing to get drawn into the age old argument...

There have been many posts which have suggested that we should be pushing for out of brace xrays. My comment was not aimed at those who asked the questions; I was not suggesting that you/they were worrying or doubting. I was merely stating that I have sufficient confidence in Immy's consultant not to worry or have doubts about the decisions that we have made with his guidance.

[Pooka1]

[...] in their experience a curve progression is accompanied by an in brace progression.

If they know this, and if it is universally or near universally true, then out of brace films clearly are not necessary.

It sounds like they have evidence for this, is that right? That would explain the protocol of not getting out-of-brace films, at least within the two years if the curve hasn't progressed.

[SUSANNA FREDERI]

My daughter wore it for a year, and she was miserable because it hurt her skin under arms, neck, and thighs.

[RugbyLaura]

Susanna, I'm sorry your daughter found Spinecor difficult to wear. My daughter has worn both Spinecor and rigid and finds Spinecor much, much, much better. There's no comparison for her. Horses for courses I guess but to be honest, I've never heard of anyone who has prefered a rigid brace! The comfort is so much better with Spinecor, especially for thoracic curves.

What are you doing now to treat her Scoliosis?

Laura

[txmarinemom]

Hawking Cheneau, Laura ... go figure. The Weiss clan slams Spinecor more than we do - LOL.

Funny how so many Schroth plants have joined the list in the last few weeks.

Pam ;-)

[RugbyLaura]

Hawking Cheneau, Laura ... go figure.

Ahhhhhhhhhh, that explains it!


The Weiss clan slams Spinecor more than we do - LOL. :p ;)


Funny how so many Schroth plants have joined the list in the last few weeks.

Pam ;-)

Had a few 'advertisments' on the other forum too. Most recently, though, from an unregistered Spinecor enthusiast. Gives us all a bad name. :mad:

[Pooka1]

Horses for courses I guess but to be honest, I've never heard of anyone who has prefered a rigid brace!

Well, though my daughter never wore a Spinecor brace, she prefers sleeping in her rigid Charleston to not sleeping in it. :eek:

sharon

[Pooka1]

Hawking Cheneau, Laura ... go figure. The Weiss clan slams Spinecor more than we do - LOL.

Funny how so many Schroth plants have joined the list in the last few weeks.

Pam ;-)

Sock puppetry?

I wonder how much they get for Schroth treatment and a Cheneau brace? It must be a lot.

[RugbyLaura]

Well, though my daughter never wore a Spinecor brace, she prefers sleeping in her rigid Charleston to not sleeping in it. :eek:

sharon

I have heard of this many times before and I will admit that Immy does not feel this way about Spinecor. She would give her life savings (yes, all £15.25!) for just one night without it.

Rigid braces for higher curves seem to be the most uncomfortable, where is Willow's? A couple of Immy's friends (through the UK forum) have rigid braces that look reasonably comfortable and they don't moan about them - however, the girls both have lumbar curves so the brace doesn't come up as high. Immy's rigid one was very obvious under clothes and was very restrictive. She couldn't even stand up without help from lying; just lay there like a beetle, wiggling her arms & legs.

[Pooka1]

Rigid braces for higher curves seem to be the most uncomfortable, where is Willow's?

~40* thoracic

[RugbyLaura]

Immy's apex is at T9 and is a very long curve. This apparently makes it difficult to brace with a rigid brace as it has to go so high. At one of our first consultations we were told she'd need a Milwaukee :eek:

[Pooka1]

Immy's apex is at T9 and is a very long curve. This apparently makes it difficult to brace with a rigid brace as it has to go so high. At one of our first consultations we were told she'd need a Milwaukee :eek:

I just looked at Willow's radiograph from January (~33*). The vertebra are numbered. Her apex is also at T9.

sharon

[RugbyLaura]

I just looked at Willow's radiograph from January (~33*). The vertebra are numbered. Her apex is also at T9.

And Savannah? Was hers a single curve at T9 too? I'm sure the info must be on this site somewhere... How many vertebrae were fused? And how is her flexibilty likely to be affected long term? (Just thinking to the future here... :( )

I hope she's doing well.

Laura

[Pooka1]

And Savannah? Was hers a single curve at T9 too? I'm sure the info must be on this site somewhere... How many vertebrae were fused? And how is her flexibility likely to be affected long term? (Just thinking to the future here... :( )

I hope she's doing well.

Laura

No I don't think I ever put the curve apex in a post. Savannah's curve is the same type and location but she had much more rotation and her curve moved much quicker than Willow did. Savannah was visibly deformed at a lower curve than Willow has now and yet Willow looks normal to the uneducated eye. It's the lack of any significant rotation in Willow.

Savannah is fused from T4 to L1 in March and has no noticeably change in flexibility. She didn't do sports much before but she liked tennis in school. She will pursue tennis after she comes off restrictions next month. If she wanted to resume riding I would let her on a very smooth draft cross or daisy cutter thoroughbred or something like that.

I have come to appreciate the predicament of JIS more after reading this forum. With AIS and being closer to bone maturity, a surgery decision is relatively easy, at least for me. But with JIS, it seems like a white knuckle, nail biter for so long. It must wear you out. I'm glad there are developing more options for these kids.

Good luck Laura and good luck to everyone.

[emarismom]

"I have come to appreciate the predicament of JIS more after reading this forum. With AIS and being closer to bone maturity, a surgery decision is relatively easy, at least for me. But with JIS, it seems like a white knuckle, nail biter for so long. It must wear you out. I'm glad there are developing more options for these kids."

Pooka,
I feel like am in a perpetual state of fear! Now even when I get "good" or "decent" news, it is dampered by the fact that I KNOW that the news says lttle about what the future may hold. JIS (along with CM/SM) has helped me to put the important aspects of life into perspective. We have been dealing with this for just over 4 years now, and Emily is only 9:eek:

Michelle

[RugbyLaura]

I have come to appreciate the predicament of JIS more after reading this forum. With AIS and being closer to bone maturity, a surgery decision is relatively easy, at least for me. But with JIS, it seems like a white knuckle, nail biter for so long. It must wear you out. I'm glad there are developing more options for these kids.

Good luck Laura and good luck to everyone.


Thank you Sharon, you brought a tear to my eye. Perhaps we're getting soft in our old age?:D

[Haleysmom]

Hello all,
Thought I would put out my update, Haley had a great checkup. She is stable at T23 in Spinecor. She is very mature with a riser 4 so we are shooting for stabilization. We are not typical Spinecor patient, due to her age and riser. For all those questions/concerns I read, she is extremely active and does not complain, it is letting her live her life! She wore the brace for 6 basketball games this weekend! I do recommend inquiring about the Adult bottoms! They are more like a pair of compression shorts- a new model is due out shortly too!

[jillw]

Thanks for posting your update. I'm glad to hear things went well for Haley. Just curious, given her Risser, how long do they anticipate she will be wearing the brace?

[WNCmom]

Great news, Haleysmom! How wonderful her spine is so close to maturity.

Just want to second the recommendation on the adult bottoms. My 13-yo son wore them for most of his SpineCor time and found they made the brace more wearable.

Mary Ellen

[Jenmom]

Can you tell me the what the difference is between the kids bottom and the adult bottom? My daughter is 13 and in the Spinecor brace. She has been complaining about the leg bands. Thanks. Kathy

Just want to second the recommendation on the adult bottoms. My 13-yo son wore them for most of his SpineCor time and found they made the brace more wearable.

Mary Ellen[/QUOTE]

[RugbyLaura]

Fabulous news HaleysMom! (I have just answered your PM - only just spotted it! Did you talk to your Dr about the back pain?)

I would love to know more about the 'adult bottoms' too... Are there any photographs/illustrations available??

Laura

[WNCmom]

To all who are interested in photos of the spinecor shorts: I posted them on this thread on 12-09-07. It's post #2649. The design has changed/improved slightly since then, but you'll get the basic idea.

Mary Ellen

[Haleysmom]

Yes, Haley is at a riser 4 and that is were we started. They expect her to be in for about 18 months - which means she will be about 14-15 years old.

The adult bottoms are literally a pair of shorts - very tight with lots of velcro areas. They require completly different strap connections as well as they are totally velcro connected - no snaps, no strings, no bands. They still fit under clothes fine - she did need one size bigger jeans because I didn't want them that tight on the brace (teenagers!) And they show above the low rize jeans.

[Haleysmom]

Also, I apoligize but there are two of us out here with very simalar screenames. Haleymom was here before me(Haleysmom) and her daughter is much younger and we have had a nice chat! There was a post that I think is confusing us. My Haley doesn't have backpain, and we live in Wisconsin.

[Jenmom]

How do they deal with the restroom? Now she has a bodysuit with snaps but the adult bottom looks like it is one piece. And did you have to get a different top as well since the straps use velcro instead of snaps? Looks like it would be more comfortable.



The adult bottoms are literally a pair of shorts - very tight with lots of velcro areas. They require completly different strap connections as well as they are totally velcro connected - no snaps, no strings, no bands. They still fit under clothes fine - she did need one size bigger jeans because I didn't want them that tight on the brace (teenagers!) And they show above the low rize jeans.

[Haleysmom]

For the bathroom, there is a piece that opens in that area if they don't want to take everything off - then the body suit would work the same. I think that section is actually being completly removed in the new model, but I haven't seen it yet. The bigger challenge is "that time of the month"....most of the younger girls arn't in yet - but mine is. So she doesn't use the body suit, wears regular undies and a tank top or Under Armor t-shirt - I think she take stuff off most of the time - or pulls the undies to the side.
There are no snaps on the top either, that too is velcro.

[WNCmom]

When my son switched to the new bottoms, they did not replace the bolero or the straps, just cut the snap ends off the straps and replaced them with new velcro ends that would stick to the velcro on the shorts. They marked the spot where the straps stuck on the shorts with magic marker.

There was a flap in the crotch that opened for using the toilet. We finally just cut that off because it wasn't necessary and it got in his way. But I think SpineCor is solving that issue if they haven't already.

Mary Ellen

[Jenmom]

I emailed Spinecor to inquire about the adult bottom. Here is the response. Note she says they are coming out with a new bodysuit with legs next month!

Dear Kathy,

Thank you for your email regarding the SpineCor Brace.

Your email has been forward to me by The SpineCorporation/Becker Orthopedic. My name is Valerie Vachon, North American SpineCor Trainer and responsible for clinical and technical support. It will be my pleasure to assist you.

It is our aim to make the SpineCor Brace as comfortable as possible for all our patients. As part of our continuing product improvement program we have been testing over the last 18 months various designs of body suit with legs to offer as an option for patients with sensitive skin. After extensive trials we shall launch in November 2008 the new SpineCor body suit with legs. The snaps are now much larger and repositioned making them easy to fasten; the opening is now more than adequate for toileting. This product will be the same price as the regular Leotard style body suit and available through all SpineCor providers.

We have also been testing over the last years a new pelvic base section mainly for the adult population. The product will not be available for production and distribution until his effectiveness has been proven. Few chiropractors are using this new pelvic base on adults in order to assess the stability and efficacy of it, but I am afraid that the number of patients treated with it is insufficient for the moment to give any results.

The ‘new’ pelvic base section looks like biker shorts with a belt of Velcro. Therefore, there is no snap on the pelvic section neither on the corrective bands; we are now using Velcro to fix the corrective bands to the pelvic section.

Hope this help.

[Jenmom]

Hi, my daughter is battling "that time" as well (this week in fact). We went to her ortho on Monday and I asked if we could buy an extra bottom so I could have a change to wash. He is getting back to me on the cost. Good news he said she looked great and we go on Nov. 17th for her x-rays and are hoping for good #'s.


For the bathroom, there is a piece that opens in that area if they don't want to take everything off - then the body suit would work the same. I think that section is actually being completly removed in the new model, but I haven't seen it yet. The bigger challenge is "that time of the month"....most of the younger girls arn't in yet - but mine is. So she doesn't use the body suit, wears regular undies and a tank top or Under Armor t-shirt - I think she take stuff off most of the time - or pulls the undies to the side.
There are no snaps on the top either, that too is velcro.

[RugbyLaura]

There was a post that I think is confusing us. My Haley doesn't have backpain, and we live in Wisconsin.

Ahhh. That was me. :o

[Jenmom]

We are getting an extra set of leg straps for $100 that should help.

[QUOTE=Jenmom;66782]Hi, my daughter is battling "that time" as well (this week in fact). We went to her ortho on Monday and I asked if we could buy an extra bottom so I could have a change to wash. He is getting back to me on the cost.

[Haleysmom]

We are getting an extra set of leg straps for $100 that should help.

[QUOTE=Jenmom;66782]Hi, my daughter is battling "that time" as well (this week in fact). We went to her ortho on Monday and I asked if we could buy an extra bottom so I could have a change to wash. He is getting back to me on the cost.


Wow we got one top and 3 sets of bottoms with the orignial brace in the orignal cost...we often go thru more than one! but I just realized you must have the traditional bottoms, we have the adult.

[Jenmom]

Wow three bottoms would have been fantastic!! We are picking up the spare set of leg straps on Monday, that will help a lot. I am hoping the insurance will cover it but they will be well worth $100 to me to have a spare set.

[Jenmom]

Hi All,

Just had to share. Jen went to her 2nd xray appt. since being put in Spinecor. Her curve went from 25 to 10! Her Dr. was happy and we are totally excited. He said her risser was between 2 and 3 and would leave her in the brace for about a year and then do a hand xray to make sure she is done growing.

Take care,

Kathy

[jillw]

Kathy, that is great news! I knew Jen had an appointment coming up and didn't know if you had gone in yet. So do you go back in 5 months? Did her curve start at 25 degrees or was it even higher prior to being braced.? Thanks for updating us!

[Jenmom]

Hi, Thanks! Jen's first xray in Nov. 07 she was at a 16 degree curve. It was wait and see, come back in six months. We went back in May and it had gone up to 31. We went quickly into the Spinecor brace and at her first in brace x-ray after five weeks in the brace she was at 25 (we were happy with that). But we are even more happy with the 10!

Her Dr. was originally going to see her every four months but I guess because she is doing well in it he said six months this time. So we will go back in May 09.

[christine2]

Kathy
That is awesome news!!!! I know how you feel (been there, done that) The good news definately gives us all hope.

[RugbyLaura]

Fab news Kathy!

Laura x

[BellasMom]

Hello All;

This is my first time posting on this board after few months of reading

Some background on why I am here - my 9 yo daughter Bella was diagnosed with Scoliosis this summer. Initial x-ray showed 23 degrees lumbar curve and we were told to come back in 3 months to see whether it progresses

We did not just sit and wait, we tried to find some alternative medicine for her and did some treatments with a doctor in NY in August. Visually, her spine looked much better

We came back in October and her curve was already 32 degrees. We did not know whether NY treatment did not help or whether it was supposed to be repeated more often. Bella's orthopedist suggested Boston brace, but I said no

I started doing some research and found SpineCor that seemed like a better alternative to a Boston Brace. We went back to Bella's orthopedist and even though, he does not do SpineCor himself anymore (he used to about 10 years ago), he agreed that it's better than nothing. He also checked-out our alternative doctor in NY and agreed that her treatments are safe for Bella.

So we went to NY again, did few treatments, but this time did an X-ray right after them. Our orthopedist compared them and e-mailed me results: "Lower curve is the same, upper is slightly better". When I looked at the enclosed pictures, I was speechless. Both of them showed 25 degrees lumbar, not 32 as he "showed" me in October and 19 - went into - 17 upper curve

In any case, we have an appointment with Dr. Rivard on Thursday, the Thanksgiving Day. I've read this thread almost entirely (took a while ;) ) and got some good advices, but still - any last minute suggestions?

I'll be making pictures of her in new brace to make sure that she puts it on properly, I'll try to get more than one bodysuit. I remember that I need to bring Bella's old X-rays with us

What else????

Thanks!

[Jenmom]

Hi Everyone,

I just wanted to give everyone a heads up that Rita at bodysuits.com said the new bodysuit with shorts should be on the website on Monday, the style number is 8301. She said they have worked on this suit a lot and she thinks it came out cute and comfortable.

Bellasmom,

I hope everything goes well. Our ortho said most of the kids have a melt down the day of fitting so just be prepared for that and maybe take a video camera for the exercises and strap placement. Good luck!

Kathy

[jillw]

Bellasmom, Good luck on Thursday! Like you and Kathy said, it wouldn't hurt to document how the brace is put on. Ideally a camcorder so one of you can film Dr. Coillard as she does it. At least one extra bodysuit is good - you'll be back in one month for a follow up so if your daughter seems to like the bodysuits you can buy more then (and if she doesn't and you use another alternative underneath you won't have wasted as much money).

It's a loooong day there when you go for the first visit because they need 2 separate sets of xrays. I was a little overwhelmed and in fact it was only our last visit that I felt like I remembered the what and where! Subsequent visits will be faster. You'll meet the doctors, then you'll have to register with the hospital and pay for the xray part at a different location (they will show you everything the first visit), then off to get xrays, then they do the fitting of the brace and back to get more xrays, back to the office to get the results, etc. So I suggest, bring ice water, maybe a protein bar or some quick clean snack for the kids. You're not really supposed to eat in the hospital, but if you get desparate one of you can take the kids outside for a minute for a quick snack. Bring books, a handheld game or some sort of entertainment because there will be some downtime between all those steps.

Good luck!

[jillw]

Bellasmom, another thought...I don't know where you're coming from or whether you are driving or flying to get there, but given that you've been to NY for treatment I"m guessing you are within an hour or so of the NYC Metro area and therefore will probably be driving to Montreal. Bring some good diversions for the trip home. My daughter was very uncomfortable and upset in the brace when it was first put on and a long car trip would only have given her more time to focus on her discomfort. Bring a DVD player with a movie she's really been wanting to see and/or a favorite movie. We stopped in a Friendly's in Plattsburgh (just off I-87) on the way back and got her an ice cream sundae "to go" and it was only when she was both watching a movie and eating a treat in the car that her mind was distracted from her discomfort. This calmed her down for the rest of the trip even after the ice cream was gone.

Good luck!

[christine2]

Excellent advice Jillw

I would like to add Don't forget receipts for insurance and a disk of the x rays

We look at the disks often for motivation. Make sure you have your paperwork together for the border crossing.


GOOD LUCK
and let us know how it goes!!

[BellasMom]

Dear JenMom, JillW, and Christine2;

Thank you so much for all the advices. We are from the hometown of the Boston Brace ;), so we will be driving to Montreal

We always have DVD in the car, since we do long trips often, so this is given, but thanks for the reminder anyway.

We are staying in Montreal an extra day to make the transition easier

I am still a little worried about whether or not we made a right decision to go with the SpineCor, since I read that sooo many kids have great results at the beginning but their curves deteriorate in a year or so (that's the reason why our ortho stopped using SpineCor), but I can't imagine my child in Boston Brace for 6 years

Anyway, nice to "meet" all of you and good luck to you and your kids

[Jenmom]

Hi Everyone,

A friend of mine's daughter just went in the Spinecor brace this week. Our ortho put Jen straight into her brace 20 hours a day. My friend's Dr. is easing her into a couple of hours a day and working up to all night in two weeks and then working up to 20 hours within four. I thought Spinecor was meant to start off straightaway at 20 hours.

Would be interested in how others started out.

Kathy

[CAmomof2]

Jenmom,
When our daughter was 1st braced, she wore it for 20 hrs, with the two 2 hour breaks in the day right away.

[jillw]

Kathy, no break in period for us either....the regular schedule of full time brace wear from the beginning.

Bellas mom, I understand your concerns (and we are just past the 1 year mark so let's cross our fingers and see what happens!), but at least we got a good year out of it so far. I couldn't imagine 9 years or so in a boston brace or milwaukee for my daughter so every extra month we get out of it, the better.

Also, while I have seen people on this board who had good initial results for the first year or so and then went on to have their curves progress, you can also see from the signatures that there are many who have 2 or more years in brace and are still having great success. Hopefully our children will all fall in that category.

[BellasMom]

every extra month we get out of it, the better..

This is exactly my thinking :)

[christine2]

My daughter is 2 + years in brace and still getting reduction!! This is what I think is in our future or should I say HOPE is in our future.

I think the brace is going to hold my daughters curve at 1 or 0 degrees until her major growth spurt. Then during the growth the curve will creep up. But starting at such a low # I wish to keep it below 20, I have a GOOD feeling about all this!! If that happens we are GOLDEN!! Of course anything can happen, my daughter is only 8.

We started bracing 20 hours immediately. It worked for our family. I think as a result of this my daughter accepted the brace completely within a few days. Every kid is different, we were very fortunate.

Bellasmom
We will be thinking of you on Turkey Day!! (we don't eat much meat though especially not turkey))

[BellasMom]

My daughter is 2 + years in brace and still getting reduction!!

This is very encouraging!


Bellasmom
We will be thinking of you on Turkey Day!! (we don't eat much meat though especially not turkey))

Thanks!

[Jenmom]

http://www.bodysuit.com/112408temp.html

The new bodysuit with boyshorts built in is on the website now. I am so happy that I can order this now and Jen will be able to run her mile at school without the thigh bands hurting her. If anyone else is interested take a look, it is at the bottom of the regular bodysuit page.

Kathy

[jillw]

thanks for the bodysuit info, Kathy. Do you know how the crotch snaps work? Does the whole crotch and 3" leg inseam area unsnap or just a large area but the "legs" say closed? I wonder if there would be a snap under the thigh bands .

Are you ordering one? I probably will order one to give it a try (and then order many more over time if it works well). But if anyone gets one first I'd be interested in hearing about the snaps (i guess I could email the company for that info too)

My daughter is OK where the thigh bands are, but the crotch straps rub her raw on occasion in the groin area so it would be very nice to have something covering this area for her.

UPDATE: I called the company and there are 4 snaps - if you unsnapped all of them, the entire bodysnap (including the legs) would open. You could also just unsnap the 2 snaps in the crotch area (although I'm not sure if thre would be enough room to go to the bathroom). I'm going to order one when katie gets home and I have a chance to measure her to see how sizing might work. Even with shipping, it's substantially less than the spinecor bodysuits.

[christine2]

My problem is that the bodysuits on that site are adult sizes. I tried the x tra small and they are way to big for my daughter. If you all find out that they have children sizes please let me know. I would love to try them.

I also would like to know if the shorts are long enough. I would think they would need to be the lenghth of bikeshorts.

Thanks for the info

[christine2]

I actually just checked the bodysuit.com website again. The bodysuit is a boyshort style, which is a 3" in lenghth. That may work!!

[Jenmom]

Hi Chistine2

I gave Rita the measurements for the short from a pair of Nike shorts Jen got when she first got her brace. They are the perfect length but she only wears them when she is going to her ortho appt. because she doesn't like having to take her brace off for the restroom. I don't know how the snaps are going to work but Rita said they reworked the suit several times to get the snaps right but to be honest I didn't think about there being a problem witht the thigh bands so we will see when we get it. I have ordered two and when Jen has tried them out I will let you know. I guess they will not actually be ready to ship until early Dec.


I actually just checked the bodysuit.com website again. The bodysuit is a boyshort style, which is a 3" in lenghth. That may work!!

[BellasMom]

We are back from Montreal. It was such an emotional trip.

I was really impressed by Dr. Rivard and Dr. Colliard - Dr. Rivard met us in the hall of the hospital and rushed through registration, payment and initial x-ray in less than half an hour. Unbelievable - we did not have to wait in a single line.

His measurements of Bella's angle was L20. In-brace X-ray showed 15 degrees. He said that it was a good 25% correction.

I can't say that Bella feels comfortable in her new brace - no, there were no major meltdowns yet, but she is quite miserable because of the thigh bands mostly. They bother her a lot! Anybody has any ideas on what I can do to help her?

I would like to order a bodysuit with the shorts, but there seemed to be only adult sizes. I sent out an email to them - let's see what they say about children sizes

[christine2]

Bellas mom

Great news. Dr R & Dr C are great aren't they!! I am a bit confused didn't you get a reading of 32 from the last ortho? Did Dr Rivard measure @ 20?

Anyhow that is exciting. I have been trying to get childrens bodysuits from Rita for 2 years and gave up. She did come up with a suit but it had elastic legs so I sent it back. Perhaps if more people asked for them we will get them. I can't remember whether the leg bands bothered my daughter or not but I will say within a few days there were no more complaints. We kept looking at the x rays for encourgement and that seemed to help. I do remember doing things like taking her iceskating and bowling to get her active and her mind off the brace and that seemed to work. If you need "potty" advice feel free to PM me. I am off work thru Tuesday & will have time to chat.

[CAmomof2]

Bella's Mom,

I'm glad to hear that things went well for your daughter. It isn't an easy time - I agree.

The 1st week the leg bands really bothered my daughter (she's 9), but after a week she was ok with them. The skin has to "toughen up" a little.
My mother has altered girls "boy leg" underwear for her as she doesn't care for the spinecor bodysuit. (She finds the crotch part too long.) Anyway, my mother put a few snaps in the crotch of the boy leg underwear and she wears an undershirt. That's what has helped us!

My daughter has been in the brace for over 2 months now and never complains about it anymore. She says that she feels like it is helping her, and so now she doesn't mind it. Hang in there - it IS hard at first!! We are thinking of you. :)

[BellasMom]

Great news. Dr R & Dr C are great aren't they!! I am a bit confused didn't you get a reading of 32 from the last ortho? Did Dr Rivard measure @ 20?

You can't imagine how confused I am :). Our ortho measured L23 in July, then L32 in October, but we had another one in November, where he put October's and November's one near another and showed me L25 on both of them. He still did not explain why he told me that Bella had L32 in October

On the other hand, if she went from L23 to L25 I might've choosen "wait and see" approach rather than having her put in brace. Don't know which decision would've been more right in any case ;)

"Potty" problems does not seem to be a problem (at least, not yet :) ) - she is just using bodysuit as an underwear, so it's not a problem

[BellasMom]

The 1st week the leg bands really bothered my daughter (she's 9), but after a week she was ok with them. The skin has to "toughen up" a little.
My mother has altered girls "boy leg" underwear for her as she doesn't care for the spinecor bodysuit. (She finds the crotch part too long.) Anyway, my mother put a few snaps in the crotch of the boy leg underwear and she wears an undershirt. That's what has helped us!

Bella has some body leg underwear, but it's way too short to cover her thighs where the bands are. Plus, she seems to like SpineCor bodysuit - may be because they had the right size for her, it fits her perfectly (for now). But thanks for the advice, I'll look in stores for some other model of that underwear

I am just hoping that her skin toughens up a little as you say

[christine2]

Bellas Mom

It is a tough position to be in. Different measurement/different ortho's. I went and saw another ortho(who was fabulous BTW) and his exrays were a bit different than Dr Rivards. Long story short I called Dr. Rivard in a panic thinking that the curve had progressed and want to see him ASAP. He said not to woryy it all depends on body positioning during the xray. I have read that hear quite often too.

That being said I am going to share my very opinionated veiws on waiting & watching. Hopefully it does open a can of worms!!

I think waiting and watching can be dangerous. Why not use spinecor. It is a very easy brace to wear. There is very little effect on quaility of life. And if we were wrong not doing the wait and watch thing then so be it.

One of our ortho opinions said to me, I don't know what to do. 6 yrs old and a 33 degree curve. He flat out told me to keep doing the Spinecor, you have nothing to loose.

My daughter will only wear the spinecor suits, also as underware. I save money not having to buy her underware :) She is very thin but tall and they fit her like a glove. She is willing to try the boyshort suit if we can get her size.

[BellasMom]

I agree that SpineCor is a good solution, I was just saying that if our ortho did not scare me half to death (9 degrees in 3 months), I might've made the wrong decision with "wait and see" approach

So, I am glad that she is in Spinecor and I hope that this will be the solution for her

She is playing around with her brother right now and seems that she completely forgot about the brace, but when the time comes to put it on again (after she'll take it off tonight), it'll be a struggle

[BellasMom]

I just realized that in a week we are flying to Mexico for a vacation. Of course I knew that we were going, but I just now realized that we have a child with a lot of metal on her

How do you go through security with a child in brace? Do you take it off? Do you keep it on and show some kind of note from your doctor?

Thanks

[emarismom]

We have flown many times over the past year and a half that Emily has had her brace. Most of the time there has been no problem with her wearing her brace through security. The security checkpoints are set to pick up a "certain amount" of metal, and the brace does not reach that certain amount.

There was one time that Emily had on her brace and was wearing a belt that had a metal belt buckle. That time she did have on too much metal. The security officers took us into a side room to "check" her. They allowed me to go in with her, but I wasn't allowed to speak to her. They had her pull up her shirt (it was a woman officer) and asked her all kinds of questions about what she was wearing, why, how long, etc. Then they had her take off the belt and walk through the metal detector again, that time it didn't go off and we were free to go.

Moral off the story: The brace is fine to go through, just be careful not to put on anything else with metal to not go over the limit.

[BellasMom]

Thanks! This is very helpful!

[Jenmom]

Hi everyone,

I emailed Rita to ask if she was going to do a youth size in the suit. She said it is being made and will be on the website next week. She said to type scoliosis in the comment section to get a 10% discount. Not sure when they will actually be ready to ship though. Hope everyone had a great Thanksgiving.

Kathy

[christine2]

Excellent on the bodysuit info Jenmom. We are going to try one.

Thanks!!

[BellasMom]

Hi everyone,

I emailed Rita to ask if she was going to do a youth size in the suit. She said it is being made and will be on the website next week. She said to type scoliosis in the comment section to get a 10% discount. Not sure when they will actually be ready to ship though. Hope everyone had a great Thanksgiving.

Kathy

Hurray!!!!!!

Thanks for the update!

[BellasMom]

Since thigh bands are bothering Bella so much, my husband and I kept looking at the brace trying to figure out why they are there to begin with.

In our minds, crotch bands are the thing that is keeping the pelvic base in place, not the thigh bands, but at the same time, when you go to the bathroom, you are allowed to unsnap the crotch bands, but not the thigh ones. We were told that if we unsnap the thigh bands, we'll have to re-do the whole brace

Why are they there and what is their purpose in life (of the brace)? :confused:

Second question - how long did it take your child to start putting the brace on by herself? It takes me a while to put it on Bella, so I can't imagine her doing this on her own. My biggest issue is in keeping bolero in place. After I pull #1 hard enough to snap it, no matter how hard I pull on #2 in a different direction, bolero is always at least a little off center. Also, how can they snap them in the back by themselves????

[HaleyMom]

In our minds, crotch bands are the thing that is keeping the pelvic base in place, not the thigh bands, but at the same time, when you go to the bathroom, you are allowed to unsnap the crotch bands, but not the thigh ones. We were told that if we unsnap the thigh bands, we'll have to re-do the whole brace

Why are they there and what is their purpose in life (of the brace)? :confused:

The thigh bands hold the pelvic base level by anchoring on the outside of the leg rather than the inner thigh area like the crotch bands. Without the thigh bands the the straps around the hips would ride up on the side that has the most tension.


Second question - how long did it take your child to start putting the brace on by herself? It takes me a while to put it on Bella, so I can't imagine her doing this on her own. My biggest issue is in keeping bolero in place. After I pull #1 hard enough to snap it, no matter how hard I pull on #2 in a different direction, bolero is always at least a little off center. Also, how can they snap them in the back by themselves????

My daughter had to put the brace on and take it off at least 10 times before she left the office at her fitting to ensure she knew how to do it by herself (she was 10 at the time). She's done it by herself ever since. The bolero may look a little off center (it even looks off center in the SpineCor manual) depending on how crooked and rotated your daughter is. If you're concerned, take a picture and email it to your Dr.

[CAmomof2]

We always help our daughter put her brace on. She can manage the bottom part, but the top part is not as easy.

[jillw]

Why are they there and what is their purpose in life (of the brace)? :confused:
Second question - how long did it take your child to start putting the brace on by herself? It takes me a while to put it on Bella, so I can't imagine her doing this on her own. My biggest issue is in keeping bolero in place. After I pull #1 hard enough to snap it, no matter how hard I pull on #2 in a different direction, bolero is always at least a little off center. Also, how can they snap them in the back by themselves????

Bellas mom, the thigh bands are very important to stablize the pelvic base (i.e. the anchor of the entire brace). In fact another group did a study of spinecor and apparently left out the thigh bands (according to the pictures they published with the study) and their results were not good at all.

When we would put Katie's brace on, I would also have her pull on the #2 at the same time to help keep the bolero centered. Nonetheless the bolero is often a little off center. Dr. Rivard wasn't concerned when I raised this issue with him. I also found that once we snapped the #3, her pelvic base would be pulled of center. So when we put on her pelvic base, instead of centering it to start with, we put it a little to the opposite side. Then when the #3 pulls it, it actually pulls it back into centered position (more or less) make sense?

I don't remember exactly how long it took Katie to put her brace on - I figured I'd be doing it for her until she got much older! A few months into it, she started to put the base of her brace on herself. She did that regularly (and I would do the top) Then, 5 months or so into it, her #4 started to come unsnapped. After a while of this happening, she got tired of coming to me (or the school nurse if in school) to have it resnapped so she figured out how to do it herself (she uses her fingers to count the snaps on the back so that she knows where to put it and then she does it by feel). That problem went away when we had the snap replaced. A little while after that she started to show an interest in trying to do the entire brace herself. (on weekends when there was plenty of time for her to experiment) She was so proud when she finally mastered it herself and now she always puts in on by herself (for the first couple months she would put it on when there was no rush, but if time was an issue I would still put it on her. Now she almost always does it herself). She got her brace in 10/07 and I know that before the summer of '08 started, she was able to do it herself (which was a huge relief with girl scout camp/swimming coming up). You'll find that you will get MUCH quicker at putting the brace on her over time and my daughter is now pretty quick also (much faster than she was when she started). Basically, we never asked our daughter to try and put on the brace because it was all so overwhelming to begin with. But as things settled down, we followed her lead when she showed interest in learning how to do it herself.

[christine2]

My daughter still can't put the brace completly on herself. The snaps are to hard for her little fingers. My Daughter does not undo the crotch snaps to potty just the bodysuit snaps

[BellasMom]

JillW, I completely agree with not putting more pressure on our kids in regard of putting the brace on right away

We have the same scheme - Bella puts on the bottom and I do the top. Hopefully, by the summer time, she'll be able to put it on all by herself, since she is going to the overnight camp for 2 weeks (I doubt that Dr. R will let her not wear it at all for 2 weeks )

As for the thigh bands, the mechanics are still escaping me - I believe you and the doctors when they say that thigh bands keep the pelvic base in place, but being an engineer, I just don't see it :) They are not supposed to be very tight (or at least that's what Dr. C told us), so I don't see how they stabilize pelvic base more than the crotch bands do. But if everybody says so, I'll just trust it :)

Christine2, she does not undo the crotch bands???? She really mastered something unique :) :) :)

[jillw]

Bellas mom, she's on a similar time frame/age as my daughter so hopefully she will have it down in time for camp also. If not, I'm sure you can make arrangements with the camp nurse to accomodate you. I had to do that with Katie when I registered her for camp (she didn't know how to do her brace yet. Although she subsequently learned how to do it, I still did type out detailed directions with pictures and meet with the nurse the first day of camp so the nurse could help if need be) Good luck!

[MJB]

I am worried about Halle.. Her brace is really pulling her right shoulder blade, like it is completely out of place when the brace is on and now she is having trouble during her out of brace time, she doesn't even want to take it 1/2 the time because her shoulder hurts too bad.

Honestly I am still worried that this brace is doing more damage than good and because we don't have a doctor we can just go visit anytime we have a concern, I am wondering if I should've just taken her to an Ontario hospital and got the rigid brace.

Out of the rigid braces, which are the most concealed under clothes?

[CAmomof2]

MJB,

Sorry to hear about Halle. You could always take a pic and email your concerns to Dr Rivard. I emailed him once and he replied within a few hours, even calling me on the phone.
Halle seems to be getting good "correction" with the brace. Keep us informed. Thanks. S. :)

[BellasMom]

MJB, when is your next appointment with Dr. Rivard? If it's not soon, I would second CAmomof2's suggestion of contacting Dr. R

Send him an email or call him, send him a picture - I am sure he'll be able to give an advice on how to proceed

Good luck!

[MJB]

Thanks for the response! I sent them an e-mail today about all of this. I didn't think to take a picture though. I will have to do that tonight.

She can't even make it through her dance classes anymore without having to sit out from back pain... this year she decided to do dance classes out of brace and now i am trying to talk her into wearing it during them again and she thinks everyone will ask her too many questions and talk about her.