spinecor [Archive] - National Scoliosis Foundation Forums

gerbo

11-01-2005, 01:02 PM

melissa, that is encouraging, thanks

linda; I am not happy with current brace with is a tight (hand in glove) thermoplastic TLSO model, custom made from a plastercast, which, and that is my main issue, only provides limited correction (from 29>21 degree whilst wearing the brace) All the evidence seem to suggest that with such a limited correction the endresult is unlikely to be particularly good.

Consultant we are using is unwilling to discus this or to consider other hard braces (like boston, in which additional correction after fitting is an option)

I feel we need to at least try alternatives and I must say that both the evidence, but also the theory behind spinecor appears very convincing, specially where it tends to hold the initial correction acjieved after discontinuation, opposed to haed braces where the curve tends to revert back to the original state

I am planning to give it a try, and see whether we can achieve greater in-brace correction then with the one we currently have. if so, we will continue, if not, we'll panic.

till some extend we are fortunate that we can get the fitting done by the owner of the firm producing the spinecor, so we get that as good as it will get.

I have some correspondence from him on my workcomputer, which i will publish in the next few days. Makes interesting reading

still feels like a gamble, but so does continuing on urrent lines

gerbo

gerbo

11-01-2005, 02:53 PM

Letter written to Dr Rivard, "inventor" of spinecor

Dear Dr Rivard

I hope you do not mind that I write directly to you.

I live in the UK and unfortunately my
daughter (now 11 years 10 months, no Menarche yet) was
earlier last year diagnosed with a T12 25 degree scoliosis,
progressing in some months to 29 degree. With a hard brace
(febr 2005) we achieved a 25 % correction, (down to 21 degree
in brace) and on review this month we seem to be stable, in
that the curve is still 29 degree.

I am concerned that with the current brace we are not
achieving as much correction as we should/ could be getting,
and as we are due a new brace anyway, I am reconsidering my
options.

I think that at least I need to "press" for better correction
from our next hard brace, but having "looked" at the
Spinecor, and reading the studies published on the
Spinecorporation website I do wonder whether this is an
option for us.

Although the results as published seem impressive, i am
worried that the concept doesn't appear to be having the
wholehearted backing of the orthopaedic community and
specifically that, as i understand it, The Nuffield Hospital
Oxford pulled out of the joint study (with your own
hospital), because they were not happy with the results. The
other worry is the study which i saw, by dr Weiss, who
questioned to effectiveness of the brace as well.

Have you got any insight as to why use in Oxford and through
Dr Weiss were not succesful, and are you able to reassure me?

I understand that a further study by yourself will be
published soon. Are you able to advice me when and where they
will be published, and are you already able to give any
outline of the results?

I would be grateful for any advice you might be able to give
to help to settle my anxieties. I am well aware that I cannot
afford at this stage to make a wrong choice with regards to
my daughter's treatment, as she will have to live with the
consequences forever

With regards

Gerbo Huisman
Lichfield, UK

and the reply from Andrew mills of the Spinecorporation

Dear Mr Huisman

Your email has been forwarded on to Dr Rivard however; I can easily answer your questions. More reduction in a rigid brace will not necessarily make any significant difference to the outcome.
Rigid bracing at best will prevent progression from the initial pre-treatment cobb angle, applying more force to give the illusion of more correction on an in brace x-ray may make you feel the treatment is better but that is not necessarily the case at all. There is some debate amongst practioners about the compromise between reduction of major curves, compensatory curves and balance, from my point of view all three should be considered and one not optimumized at the expense of the others.
For 12 - 24 months post rigid brace treatment curves will tend increase until they stabilize out, generally close to where treatment started.

At your daughter’s age the risk of progression is, as you know very high and it is possible you may yet see more progression despite bracing.
SpineCor treatment will not perform miracles but offers the best possibly of achieving a final stable result post treatment with the lowest Cobb angle achievable in any particular case.
In Montreal we now have long-term follow-up, 5 years, post bracing in a large proportion of the original 400 patient study group.
Results of the latest follow-up, not yet, published show exceptional stability post treatment with overall better results than any conventional rigid brace treatment.
With more than 5,000 patients treated worldwide now there is no question in our mind concerning the efficacy of SpineCor Treatment. There have of course been some failures, which basically stem from failures in training. Our training program has changed significantly in recent years to prevent future treatment centre failures.

Dr Weiss, incidentally, treated a group of 20 patients with SpineCor braces on which he based his opinions. These treatments were carried without any training or following the SpineCor treatment protocols, not surprisingly the treatments failed.

Nuffield had issues with funding the SpineCor trial as well as great difficulty in recruiting patients with a randomised protocol for treatment vs. non-treatment. Only 5 patients were treated in 18 months against a recruitment protocol of 20 patients in 12 months. The lack of funding, some training issues and any enthusiasm from the team involved resulted in them just giving up.

In general there are huge problems to introduce SpineCor into the UK since orthotists who traditionally provide bracing treatments find SpineCor very challenging, added to this they are often under great pressure to see patients very quickly and simply do not have the time for SpineCor. Furthermore it needs to be understood that is a big learning curve with SpineCor and the skills required are very different to those for rigid bracing. For these reasons it is essential that trainees treat significant numbers of patients to develop their skills. The current SpineCor accreditation program demands a minimum of twenty patient treatments and 6 months experience before individuals are eligible for accreditation. In the UK there are few treatment centres that offer the opportunity to meet the training criteria in a reasonable period of time. A change in the method of treatment delivery is required for SpineCor to ever become mainstream in the UK.
Personally I am working on ways of changing the way SpineCor is made available to the NHS but this is likely to be slow.
The latest SpineCor treatment results have been submitted and accepted by the European Spine Journal but as yet we do not know when publication might be.

I hope this information is useful to you.

Kind regards

Andrew J Mills MBAPO
Managing Director/Orthotist

The SpineCorporation Limited

It is all a bit lengthy, but thought it makes for interesting reading

MATJESNIC

11-01-2005, 03:03 PM

Gerbo,
Thanks for that information. I would be interested to know how big the curves were that were being treated. I am thrilled that your daughter and my daughter are the same age. I have been looking for girls her age who are wearing the spinecor so that she could have someone to talk to. Too bad we don't even live in the same country!!!!! Anyway, good luck with your decision. If you have any questions, please feel free to ask.
Melissa (Nicole's Mom)

me months to 29 degree. With a hard brace
(febr 2005) we achieved a 25 % correction, (down to 21 degree
in brace) and on review this month we seem to be stable, in
that the curve is still 29 degree.

I am concerned that with the current brace we are not
achieving as much correction as we should/ could be getting,
and as we are due a new brace anyway, I am reconsidering my
options.

I think that at least I need to "press" for better correction
from our next hard brace, but having "looked" at the
Spinecor, and reading the studies published on the
Spinecorporation website I do wonder whether this is an
option for us.

Although the results as published seem impressive, i am
worried that the concept doesn't appear to be having the
wholehearted backing of the orthopaedic community and
specifically that, as i understand it, The Nuffield Hospital
Oxford pulled out of the joint study (with your own
hospital), because they were not happy with the results. The
other worry is the study which i saw, by dr Weiss, who
questioned to effectiveness of the brace as well.

Have you got any insight as to why use in Oxford and through
Dr Weiss were not succesful, and are you able to reassure me?

I understand that a further study by yourself will be
published soon. Are you able to advice me when and where they
will be published, and are you already able to give any
outline of the results?

I would be grateful for any advice you might be able to give
to help to settle my anxieties. I am well aware that I cannot
afford at this stage to make a wrong choice with regards to
my daughter's treatment, as she will have to live with the
consequences forever

With regards

Gerbo Huisman
Lichfield, UK[/I]

and the reply from Andrew mills of the Spinecorporation

Dear Mr Huisman

Your email has been forwarded on to Dr Rivard however; I can easily answer your questions. More reduction in a rigid brace will not necessarily make any significant difference to the outcome.
Rigid bracing at best will prevent progression from the initial pre-treatment cobb angle, applying more force to give the illusion of more correction on an in brace x-ray may make you feel the treatment is better but that is not necessarily the case at all. There is some debate amongst practioners about the compromise between reduction of major curves, compensatory curves and balance, from my point of view all three should be considered and one not optimumized at the expense of the others.
For 12 - 24 months post rigid brace treatment curves will tend increase until they stabilize out, generally close to where treatment started.

At your daughter’s age the risk of progression is, as you know very high and it is possible you may yet see more progression despite bracing.
SpineCor treatment will not perform miracles but offers the best possibly of achieving a final stable result post treatment with the lowest Cobb angle achievable in any particular case.
In Montreal we now have long-term follow-up, 5 years, post bracing in a large proportion of the original 400 patient study group.
Results of the latest follow-up, not yet, published show exceptional stability post treatment with overall better results than any conventional rigid brace treatment.
With more than 5,000 patients treated worldwide now there is no question in our mind concerning the efficacy of SpineCor Treatment. There have of course been some failures, which basically stem from failures in training. Our training program has changed significantly in recent years to prevent future treatment centre failures.

Dr Weiss, incidentally, treated a group of 20 patients with SpineCor braces on which he based his opinions. These treatments were carried without any training or following the SpineCor treatment protocols, not surprisingly the treatments failed.

Nuffield had issues with funding the SpineCor trial as well as great difficulty in recruiting patients with a randomised protocol for treatment vs. non-treatment. Only 5 patients were treated in 18 months against a recruitment protocol of 20 patients in 12 months. The lack of funding, some training issues and any enthusiasm from the team involved resulted in them just giving up.

In general there are huge problems to introduce SpineCor into the UK since orthotists who traditionally provide bracing treatments find SpineCor very challenging, added to this they are often under great pressure to see patients very quickly and simply do not have the time for SpineCor. Furthermore it needs to be understood that is a big learning curve with SpineCor and the skills required are very different to those for rigid bracing. For these reasons it is essential that trainees treat significant numbers of patients to develop their skills. The current SpineCor accreditation program demands a minimum of twenty patient treatments and 6 months experience before individuals are eligible for accreditation. In the UK there are few treatment centres that offer the opportunity to meet the training criteria in a reasonable period of time. A change in the method of treatment delivery is required for SpineCor to ever become mainstream in the UK.
Personally I am working on ways of changing the way SpineCor is made available to the NHS but this is likely to be slow.
The latest SpineCor treatment results have been submitted and accepted by the European Spine Journal but as yet we do not know when publication might be.

I hope this information is useful to you.

Kind regards

Andrew J Mills MBAPO
Managing Director/Orthotist

The SpineCorporation Limited

It is all a bit lengthy, but thought it makes for interesting reading[/QUOTE]

gerbo

11-01-2005, 03:16 PM

I am thrilled that your daughter and my daughter are the same age.

and it doesn't stop there, my daughter, lisanna, is a very keen (and good) dancer, specially her ballet is beautiful, tap is more a "if i have to do it I'll do it" Keeping her dancing and moving is clearly a high priority

I'll keep you informed and if she ends up with a spinecor, we can let them exchange email adresses so they can compare notes (if they want to)

all best wishes

gerbo

MATJESNIC

11-01-2005, 05:03 PM

Gerbo,
How long ago was Lisanna diagnosed? Nicole was just diagnosed 3 months ago. I assume she takes her hard brace off when she dances. Nicole dances 5 days a week and she dances with her brace on. Ballet is supposed to be excellent for scoliosis. Nicole takes ballet twice a week, but her passion is tap!!!! I am curious to know whether they give your daughter specific exercises and/or therapy to do along with the spinecor brace (if she gets the brace). Nicole goes for p.t. at the chiro's and also has specific exercises to do daily at home. Keep in touch, Melissa

gerbo

11-03-2005, 01:42 AM

curve was first noticed about 2 years ago (seemed minimal, > no action), first x rayed in june 2004, and because of 5 degree progression in 11/04 it was decided to brace her, which started from feb 2005. Hard brace reduced curve from 29 to 21 degree (in brace). Check up out of brace this month showed kind of stable (??) curve at 29 degree still.

lisanna dances about 2 hours every day, and yes, isn't wearing hard brace during this time

she wasn't given any exercises at all as orthopedics in UK do not beleive it makes any difference or serves any purpose (!!!!), but we are working with physion on neuromuscular control, strengthening of trunk muscles, we do torsorotation exercises and other resistance work at gym, and she swims and she dances.

Did your daughter get a out of brace and inbrace xray on the day spinecor was fitted?, how much reduction was achieved? Did you try to find out whether your chiro (if he fitted spinecor) received the proper training by spinecorporation?

best wishes

gerbo

MATJESNIC

11-03-2005, 08:21 AM

Dr. Deutchman is the one who fitted Nicole and he is considered to be one of the best in this country. People travel from all over to get fitted by him because of his expertise. He has an office in N.Y. city which is only a one and a half hour trip by train for us.
Dr. Deutchman was both surprised and pleased when we did the x-ray in Nicole's brace. Unlike the hard brace, you don't achieve anything near a 50% reduction in the brace. It usually only shows about a five degree reduction, I think. However, Nicole went down something like 14 degrees in the brace. I don't know if that means anything as far as likelihood for success. We will not know if it is working until at least Christmas when we get the x-rays without the brace.
In addition to 10 hours of dance per week, Nicole does specific stretches on a ball and standing. She also is working on a balance board. She does eye exercises, gets electric stim and gets some gentle massage and manipulation from the chiro. She wears her brace 22 hours a day. We are doing everything possible to try to halt this curve. Only time will tell. Best of luck with your decision. Melissa

gerbo

11-03-2005, 08:40 AM

It usually only shows about a five degree reduction, I think. However, Nicole went down something like 14 degrees in the brace. Melissa

If you go to the website at www.spinecorporation.com you'll find treatment overviews/ papers giving a clear indication what to expect

as i understand it, you expect progressive correction over first 6 months, and the correction (in brace) after 4-6 months is the correction you are hopefully going to keep "forever", contrary to the longterm correction following a hard brace, which tend to revert back to the original angle

well this is the theory, and we all hope and pray it will work that way for our children

gerbo

gerbo

11-03-2005, 08:42 AM

Dr. Deutchman is the one who fitted Nicole

is he a medical doctor or a chiropedist?

MATJESNIC

11-03-2005, 10:59 AM

[Dr. Deutchman is a chiro. whose practice is devoted to scoliosis patients. When I told you about Nicole's correction in the brace, it was the day she was fitted in it. She has only been in it for 2 months so we won't know if it is working until Dec 28th when we go back for x-rays. Even then, it is possible that we won't know if it is working. I am not sure if she has grown in the last couple of months. She is tall for her age, 5'1'' How tall is your daughter? Is her risser a 0? Nicole's is. Does she want to try a different kind of brace? Melissa

pat

11-04-2005, 07:17 AM

Hello!
Our family traveled to Montreal earlier this week to fit our 11 year old daughter in a SpineCor Brace. Everything went very well, our daughter is adjusting beautifully to wearing the brace 22 hours a day. We researched the SpineCor Brace, after our oldest daughter wore a "hard" brace for two years, and ended up having fusion surgery a year ago. She's doing great also! Pat

Celia Vogel

11-04-2005, 08:07 AM

Pat,

No way !!! Which day were you there ???? We were there on Tuesday at 1:00 p.m. to fit our 5 year old with the Spinecor How many times were you shown how to put on the brace ? I'm afraid to take off the brace for fear that I won't know how to put it back on :eek: I'm planning to take pictures of where all the straps go so that when she takes a bath today, I'll be able to fit it on properly. How many body suits did you get ? We were given two complementary body suits and I've ordered an extra four. Each one is $60.00 - and they're not even Calvin Klein :D

Celia

MATJESNIC

11-04-2005, 01:25 PM

Hi There,
My ears always perk up when I see the word Spinecor. So few children on these sites have this brace, so I am always so happy to talk to others experiencing the same brace. We were not given any free bodysuits, but ours only cost $35. Since Nicole wears them with nothing underneath, I wash them all the time and she changes them daily like underwear. Hers all ripped in the crotch and they replaced them all for me. I am now waiting for some different ones to come in from a company I found on the internet--special-clothes.com. They are only $22 and also have crotch snaps. They come in a variety of colors, but we bought all white.
I was also afraid of doing the brace incorrectly. But the doctor went over it so many times with Nicole and made sure she understood. Plus all the bands are marked with numbers and they put numbers next to all the snaps. I really like this brace. I sure hope it works for all of our girls!!!
My daughter is also 11. She has never come onto any sites. Would your 11-year old be interested in possibly communicating with her? Good luck to both of you and your daughters. Let's all keep in touch!
Melissa

Pat,

No way !!! Which day were you there ???? We were there on Tuesday at 1:00 p.m. to fit our 5 year old with the Spinecor How many times were you shown how to put on the brace ? I'm afraid to take off the brace for fear that I won't know how to put it back on :eek: I'm planning to take pictures of where all the straps go so that when she takes a bath today, I'll be able to fit it on properly. How many body suits did you get ? We were given two complementary body suits and I've ordered an extra four. Each one is $60.00 - and they're not even Calvin Klein :D

Celia

Celia Vogel

11-04-2005, 01:58 PM

Melissa,

You obviously know your stuff !! I looked all over the internet for body suits and I couldn't find appropriate ones ! Thanks so much for the website - I'm planning to order lots of colourful ones :D With the brace, Deirdre's curve is 4 degrees !!!!! *does a little dance* I don't think you can call that scoliosis :)

celia

MATJESNIC

11-04-2005, 02:43 PM

Celia,
Deirdre's curve is 4 degrees in the brace?? What is it without the brace? One of the biggest challenges of the brace is the washing of it. You are not supposed to put the bottom in the wash. You are allowed to take off the crotch and thigh bands to wash them, but it is so difficult to get them back in (for us, anyway) and I am always afraid that we won't put it back right!!! So I wipe down the straps while still attached to the plastic part. Anyway, the best of luck to Deirdre. How does she like the brace, by the way? Please feel free to ask any questions. We have 2 months experience!!!!!

Melissa

gerbo

11-05-2005, 02:49 AM

Our family traveled to Montreal earlier this week to fit our 11 year old daughter in a SpineCor Brace.

can you tell what her curve out of brace and in the brace were/are??

Celia Vogel

11-05-2005, 08:21 AM

Melissa,

Deirdre is a special case. She started out 3 1/2 years ago with a sixty degree curve, her initial x-rays are posted somewhere in the forum. We did serial casting for 3 1/2 years and during that time our doctor (Dr. Hedden) was able to get her curve down in the cast. I'm sure given her age and history, with time the curve would progress if we did nothing. The question for us was whether we wanted to continue with rigid bracing or go with the Spinecor. I guess you could say that during the 3 1/2 years there has been muscle atrophy and it's questionable whether she's an appropriate candidate for the Spinecor. We'll see in 5 weeks time whether the curve is holding, if not we can always go back to rigid bracing. I'm hopeful this is the right decision for our daughter, however only time will tell.

I'm not even going to touch the position of the crotch and thigh bands because I know I'll do something wrong :D I've removed the brace a few times and it's actually quite simple - I just match all the snaps and bands to the corresponding numbers. Deirdre is tolerating the brace very well, the only thing she can compare it to are the casts and I'm sure she feels a lot more freedom now. With clothing, I can't even tell she is wearing a brace - she wore a snug fitting sun dress the other day and she looked FAB !!!! No one can tell she has an orthopaedic problem - best of all it's holding her at 4 degrees !!!! Oh, her legs are a little red from the thigh bands but no big deal.

celia

Celia Vogel

11-05-2005, 08:25 AM

Pat sent me a private message yesterday and we're trying to determine whether we saw each other on Tuesday :D Listen, if anyone can find their way to the clinic at St. Justine Hospital they can surely re-apply the spinecor brace with no problem LOL !!!

MATJESNIC

11-05-2005, 09:06 AM

Celia,
I am so glad your daughter is adjusting so well to the brace. It really is amazing that our girls can wear all their clothes and we can't tell they have the brace on. It really is a brace with a lot of freedom. I love the philosophy that Movement is life. There is nothing they can't do in the brace (except swim, of course.) But of course, it is only an amazing brace if it works. It will work for some and not for others. That is the reality. Anyway, Nicole also gets those marks from the thigh and crotch bands. Lots of luck to you and your daughter. Melissa

Melissa,

Deirdre is a special case. She started out 3 1/2 years ago with a sixty degree curve, her initial x-rays are posted somewhere in the forum. We did serial casting for 3 1/2 years and during that time our doctor (Dr. Hedden) was able to get her curve down in the cast. I'm sure given her age and history, with time the curve would progress if we did nothing. The question for us was whether we wanted to continue with rigid bracing or go with the Spinecor. I guess you could say that during the 3 1/2 years there has been muscle atrophy and it's questionable whether she's an appropriate candidate for the Spinecor. We'll see in 5 weeks time whether the curve is holding, if not we can always go back to rigid bracing. I'm hopeful this is the right decision for our daughter, however only time will tell.

I'm not even going to touch the position of the crotch and thigh bands because I know I'll do something wrong :D I've removed the brace a few times and it's actually quite simple - I just match all the snaps and bands to the corresponding numbers. Deirdre is tolerating the brace very well, the only thing she can compare it to are the casts and I'm sure she feels a lot more freedom now. With clothing, I can't even tell she is wearing a brace - she wore a snug fitting sun dress the other day and she looked FAB !!!! No one can tell she has an orthopaedic problem - best of all it's holding her at 4 degrees !!!! Oh, her legs are a little red from the thigh bands but no big deal.

celia

MATJESNIC

11-05-2005, 11:34 AM

I just wanted to let people know that we just received the bodysuits from Special-clothes and my daughter does not like them. They are not as form-fitting as the spinecor ones and the neck line is much higher so you can see it under her shirt. She is very upset and I will see if I can send them back. It's too bad because they seem to be made very well and they are $22 instead of $35. But Nicole has enough to deal with, I want her to at least be happy with her bodysuits!!! Just wanted to let you know. Melissa

pat

11-05-2005, 12:22 PM

Hi Celia and Melissa and Gerbo!
Melisssa, thanks for the tip (and your recent post/tip) about the bodysuits, too bad, I was going to order some . . . Maybe I still will, but only one, and see how my daughter takes to it.

My daughter's curve is 20, but w/her sibling history, and a riser of 0, we decided to put her in the brace right now. And we love the idea of being able to move so freely; as I type this right now, I can see out my window, she's perched 15 feet up in a tree (w/her brace on, of course). Her curve w/brace on came down to a 7. She also gets pretty sore at the thigh marks, but we're doing the rubbing alcohol, and moleskin, seems to be working. Dr. Colliard told us that we could criss-cross the crotch straps and that might make it more comfortable.
It's wonderful . . sounds like we're all pretty much in the same place. Thanks ladies!
pat

MATJESNIC

11-05-2005, 01:12 PM

Pat,
Thank you for the tips. We haven't tried anything for the thighs yet. That's good to know about the crotch snaps, too. Your 11-year old sounds very active!! This brace is perfect for that! Your daughter is so fortunate that the curve was found early and is so small. The correction in the brace sounds amazing, as well. How old is your older daughter? We have a 17-year old son and a 15-year old daughter. We are thankful that they don't have scoliosis. But of course it leaves our 11-year old saying, "Why me?" Do you think your daughter would be interested in any communication with Nicole? Nicole has not wanted anything to do with coming on these sites yet, but I do think at times she needs to deal with some of the feelings she is having. Take care, Melissa

Hi Celia and Melissa and Gerbo!
Melisssa, thanks for the tip (and your recent post/tip) about the bodysuits, too bad, I was going to order some . . . Maybe I still will, but only one, and see how my daughter takes to it.

My daughter's curve is 20, but w/her sibling history, and a riser of 0, we decided to put her in the brace right now. And we love the idea of being able to move so freely; as I type this right now, I can see out my window, she's perched 15 feet up in a tree (w/her brace on, of course). Her curve w/brace on came down to a 7. She also gets pretty sore at the thigh marks, but we're doing the rubbing alcohol, and moleskin, seems to be working. Dr. Colliard told us that we could criss-cross the crotch straps and that might make it more comfortable.
It's wonderful . . sounds like we're all pretty much in the same place. Thanks ladies!
pat

cloggerx3

11-05-2005, 02:27 PM

i am 14 years old and just got my SpineCor brace last Friday. This is the only brace I have had. It is very comfortable, but takes a week or less to adjust. I would recommend it to someone, especially it they had the hard brace already. To me, it might seem bad (it did seem bad for a day or so) right now, but Im sure your daughter would think it was much better. I dont have trouble putting it on or taking it off. It has become a second nature to me and it's only been a week. I was also braced by Dr. Deutchman (same as MATJESNIC). He was phenomenal (sp). Good Luck.
>>cloggerx3

gerbo

11-06-2005, 08:56 AM

i am 14 years old and just got my SpineCor brace last Friday.

thanks for posting and letting us know.

how much was your curve before the brace and how much in the brace?

cloggerx3

11-06-2005, 10:46 AM

hi.

my curves were originally 23 && 19. and in the brace i think it was like 18 && 14. but that was the same day i got my brace, so it hasnt had time to show its complete effects (obviously) :)

Celia Vogel

11-07-2005, 06:54 AM

Melissa, Pat, Gerbo, Cloggerx3,

I hope the brace works for all of us !!!! I checked Deirdre's back this morning and a persistent tough muscle on her left side has completely disappeared ! I have a feeling this is going to work for us.... but I don't want to jinx it. :D

Melissa,

I ordered three body suits from that website before I read your post ! I think it should be alright though, because Deirdre doesn't care too much about undershirts - it's all about dresses right now ;)

MATJESNIC

11-07-2005, 02:03 PM

Celia,
That's terrific about your daughter's back. I am trying to keep all the Moms and Girls straight in my mind. If I recall (without looking back at past posts) your daughter is 5 and what a great age to not make a big deal about a bodysuit. They are really nice and 100% cotton. If the neck line was a "V" and the sleeves were tapered, we would have had no problem. I figure, with all that Nicole has to endure, she should at least get to wear the bodysuit she likes!!! I have been discussing the "bathroom" situation with Lauren. Have you come up with anything that works for you. I mentioned that Nicole just doesn't wear anything under the bodysuit. That means a lot of washing for me. Also, were you told that she could only undo the crotch straps, not the thigh bands, when she went to the bathroom? Thanks, Melissa

Celia Vogel

11-07-2005, 03:37 PM

Melissa,

I'll send you a private message, because the subject matter is a little delicate :D

celia

cloggerx3

11-07-2005, 08:01 PM

Hi Everyone-

also- celia. if u dont want to buy the bodysuits, i have come up with an alternative (that atleast works for me). I went out and bought a "long" tank top, well long enough to touch my tail bone, and some short-like underwear (boybriefs for girls). they go down probably an inch and a half down ur thigh. I have been wearing those things as an alternative to the bodysuit. total, the shirt and underwear/shorts cost $10 together. This has been very successful for me.

> Lauren

gerbo

11-08-2005, 04:04 AM

clever, I'll remember that one

Celia Vogel

11-08-2005, 08:04 AM

Cloggerx3,

Without getting too graphic :) I was given a booklet which states (among other things) that it's NOT possible to wear anything but the bodysuits because regular underwear will require undoing the pelvic base which is crucial to holding the brace in place. So basically, we have about 9 bodysuits on order.

gerbo

11-08-2005, 08:43 AM

even more to remember......

MATJESNIC

11-08-2005, 11:39 AM

Hi Gerbo,
How have you been? Anything new with you regarding bracing? If you go with the spinecor, you will be an expert after seeing our in-depth discussions about bodysuits, thigh straps, etc. LOL!! How are your girls doing? My 11-year old just got involved with SpineKids yesterday. I am really pleased. :)
Melissa

cyprusmom

11-08-2005, 02:23 PM

I just joined the forum. My daughter 11 years old,has been wearing the SpineCor for 2 weeks. Anyone has any advice on washing, drying and keeping it odor-free?Could you give me information on spinekids too?

MATJESNIC

11-08-2005, 02:37 PM

Hi there,
Welcome! My daughter is 11, too. She has been in her spinecor for 2 months. What is your daughter's curve? Where did you get her brace? We got ours in N.Y. and Nicole's curve is 37 curve. The top part can be put in the washer and even in the dryer. For some reason, it stays clean and odor-free for a long time. The biggest problem is with the thigh bands and crotch snaps. We are allowed to take them off the brace and wash them, but I am afraid that I will not be able to get them back in exactly right! LOL!
So I just take a cloth with soap and water and wipe them down. Because if you get them extremely wet, they will not dry during the 2-hour break. Some people throw the whole bottom into the washer, but they are not supposed to. In some countries people get two braces so they wash one while they wear the other!!! I am having trouble getting my insurance to pay for one!!!! LOL!!! Let me know if your daughter wants to exchange e-mails with Nicole. She would like to talk to others her age wearing the same brace. She just started posting on spinekids and loves it. Feel free to ask any more questions. Did you read all of our posts about the bodysuits, etc.?
Melissa

pat

11-08-2005, 03:12 PM

How old is your older daughter? We have a 17-year old son and a 15-year old daughter. Take care, Melissa

Hi Melissa! My oldest daughter is almost 14, she had fusion surgery a year ago, my 9 year old's spine is straight as can be; believe me we check often!! :)

Hello everyone else! Trying to keep up with all the new posts! I'm heading down to a dance store tommorrow, maybe I'll be able to find dance bodysuits with the snaps on them. And no, my daughter's not wearing anything under her bodysuit either, otherwise she wouldn't be able to go the bathroom w/o removing EVERYTHING! Thanks for all the great tips/postings!

Today, almost a week later, she's wearing it 22 hours a day, without a single complaint!

I'm curious, when you all go back for your re-checks, are you getting x-rayed (again) in brace, or out of brace, and if it's out of brace, how many hours out before the x-ray is taken? Pat

cyprusmom

11-08-2005, 03:36 PM

Nice to hear from you so quickly, you wouldn't know ofcourse that I am writing from across the ocean from a small country in the mediterrenean where my daughter might be the only one wearing the SpineCor!! We had to go to Greece to get it fitted because there is noone trained here for it or knows about it.
I just read all your previous messages and I was just so relieved to know you are experiencing the same things...and it seems like we all have 11-year olds! My daughter also dances about 3 hours a week. It was actually her dance teacher who noticed her "hump" when bending down, about a month ago. Her x-ray we took the day after that "discovery", was meausured as 32, but when in Greece at the orhtotics who fitted the SpineCor we were told that it is close to 40! No need to tell you how scared I was and angry with myself. My daughter had frequent headaches and backpains the previous year, I don't know if anyone else had the same thing, but our pediatrician asked for eye tests and blood tests...he never checked her spine. She goes to a private school and no screenings for scoliosis there like in public schools.
I've been trying to do the best for her, the rigid brace seemed so unsuitable and unfair for a growing active girl and reading about the Spinecor and its philosophy I knew we had to make it work for her. She is only been wearing it for 2 weeks she has no problem with it but the doctor in Greece wants to see her in January and see whether she should keep it on or go to a rigid one. Having a second set to wear while washing the other one has crossed my mind and I intent to mention it to them. I have no dryer (we live on an island we hang laundry in the sun) and the one time I washed it it took 3-4 hours to dry....she was without the brace that long! I thing I said too much, forgive me. Thanks for all your ideas on washing.
I believe my daughter would like to chat with your daughter. Let me know how.

MATJESNIC

11-08-2005, 04:21 PM

You did not say too much, at all. I am always interested in talking to other Moms who are going through a similar experience. I had some guilt myself regarding Nicole and her scoliosis. When Nicole was 10, the pediatrician noticed a mild curve and told me to bring her back in 6 months. Well, I never brought her back in 6 months. Well, at least not for a scoli check. I brought her to the doctor probably 4 times that year for fevers, bronchitis, asthma, etc. I had totally forgotten about what the doctor said. We go to a practice with many doctors and we saw different doctors each time. When I brought her in for her 11-year old check-up, the doctor had her bend over and said her spine looked very bad. I am angry that the doctor had not told me to get x-rays or go to an ortho when she was 10. I know other doctors do that when they see any sign of a curve. I am angry at myself for "dropping the ball" so to speak. I am usually so on top of things with my 3 children. Come back in 6 months was such a "whatever" kind of remark. Nicole is at a 37 degree curve. She will be 12 in March and is 5'1'' If you don't have a dryer, maybe you can just damp wipe each day. Let me know if your daughter wants to exchange E-Mails. She should go on SpineKids. Please keep in touch. Melissa

You Nice to hear from you so quickly, you wouldn't know ofcourse that I am writing from across the ocean from a small country in the mediterrenean where my daughter might be the only one wearing the SpineCor!! We had to go to Greece to get it fitted because there is noone trained here for it or knows about it.
I just read all your previous messages and I was just so relieved to know you are experiencing the same things...and it seems like we all have 11-year olds! My daughter also dances about 3 hours a week. It was actually her dance teacher who noticed her "hump" when bending down, about a month ago. Her x-ray we took the day after that "discovery", was meausured as 32, but when in Greece at the orhtotics who fitted the SpineCor we were told that it is close to 40! No need to tell you how scared I was and angry with myself. My daughter had frequent headaches and backpains the previous year, I don't know if anyone else had the same thing, but our pediatrician asked for eye tests and blood tests...he never checked her spine. She goes to a private school and no screenings for scoliosis there like in public schools.
I've been trying to do the best for her, the rigid brace seemed so unsuitable and unfair for a growing active girl and reading about the Spinecor and its philosophy I knew we had to make it work for her. She is only been wearing it for 2 weeks she has no problem with it but the doctor in Greece wants to see her in January and see whether she should keep it on or go to a rigid one. Having a second set to wear while washing the other one has crossed my mind and I intent to mention it to them. I have no dryer (we live on an island we hang laundry in the sun) and the one time I washed it it took 3-4 hours to dry....she was without the brace that long! I thing I said too much, forgive me. Thanks for all your ideas on washing.
I believe my daughter would like to chat with your daughter. Let me know how.

cloggerx3

11-08-2005, 06:19 PM

hmm- Celia-
I dont undo the pelvic piece when i go to the bathroom with the way im wearing my under garment things. I pull my underwear to the side, like told by the doctor when using the restroom. Hm a lil descriptive lol, but yeah. So yeah i have never undone the pelvic piece.

cyprusmom

11-09-2005, 02:15 PM

A good friend of mine told me that the worst thing to do is to start blaming ourselves for our daughters' scoliosis. It sounds like we are all doing the best we can now and thats what matters. ....
Is Nicole at 37 degrees without the spinecor? My daughter had an x-ray the day after she got it on and there was a 5-degree correction. The ortho said it was "acceptable" not great but we hope to improve. She has started the assigned Spinecor physiotherapy exercises for her type. (she is type 3 right thoracic) Is your daughter doing exercises?
When she uses tight cycling type shorts under the thigh straps she says they are a lot more comfy.
My daughter would like to exchange e-mails with Nicole. I will send you her address in a private e-mail

Celia Vogel

11-09-2005, 02:36 PM

I have no dryer (we live on an island we hang laundry in the sun) and the one time I washed it it took 3-4 hours to dry.....

Ah....Greece. I'm having thoughts of white washed little houses juxtaposed against clear blue ocean skies. Can we all come over for a stay ? :p

cyprusmom

11-09-2005, 03:07 PM

Please do! Bring your spinecors for a wash and sun-dry!

MATJESNIC

11-09-2005, 03:19 PM

Of course, we shouldn't blame ourselves. But that's our job as Moms, guilt, right? LOL! Nicole's curve is 37 without the brace. The day she got it on she was 20 something in the brace. When we go back over Christmas break, we are going to keep Nicole out of her brace for 24 hours before we go. Nicole only wears the bodysuits under her brace so that she only has to undo the crotch snaps and the bodysuit snaps when she goes to the bathroom. Nicole is thrilled to start communicating with your daughter. Your daughter's name is beautiful, by the way. Anyway, I sent you her address as well. Does she want to come onto SpineKids? Nicole just started and she likes it very much. Take care, Melissa

MATJESNIC

11-09-2005, 03:22 PM

I agree. Greece would be very nice. I went there once a long time ago after I graduated college and went backpacking through Europe with friends. Such a long time ago. LOL Melissa

gerbo

11-10-2005, 01:35 AM

Anything new with you regarding bracing?

we are now waiting for our appointment on december 16th with mr mills to be assessed for suitability. Thre is a kind of "joyful but nervous anticipation", hope it will live up to our expectations

best wishes

gerbo

(lisanna was so happy when she heard she had to take of her current brace for three whole days before assesment for the spinecor, burst out in tearsof happiness, and things she is going to do in those 3 days, the clothes she is going to wear......)

gerbo

11-10-2005, 01:41 AM

I'm curious, when you all go back for your re-checks, are you getting x-rayed (again) in brace, or out of brace, and if it's out of brace, how many hours out before the x-ray is taken? Pat

I'll ask these questions to mr mills, the manufacturer of spinecor, when i meet him in december for lisanna's assesment

now i've come to think of it, any other questions anybody wants me to put to him??

gerbo

11-10-2005, 01:42 AM

it it took 3-4 hours to dry....she was without the brace that long! .

i believe that the official line is you wear it for 20 hours/day, so you should be ok

MATJESNIC

11-10-2005, 05:51 AM

Gerbo,
You are only allowed to have it off for 2 hours at a time, not 3, or 4. If there is time you can take a 2-hour break in the morning and one at night. But we were told the breaks shouldn't be close together. It has been nearly impossible for us to fit in 2 breaks spaced apart, so Nicole usually has just one break of 2 hours. I hope Lisanne enjoys every minute of her brace-free vacation!

pat

11-10-2005, 06:34 AM

gerbo

11-10-2005, 06:53 AM

We were told the same thing, the most time out of brace should be 2 hours, but for a 24 hour period, you could be out 4 hours, but spread throughout the day. Thanks Gerbo, I hope they tell you out of brace, cause the real question/concern is how long they can hold the correction out of brace, and my daughter gets enough x-ray exposure as it is. Pat

ok, that makes sense, now i am thinking about it, I'll bet that follow up appointments only will require xrays in the brace, as taking them out of brace will not give much additional information, I will ask though

Celia Vogel

11-10-2005, 07:23 AM

Pat,

How many x-rays did you get at the first visit ? We got 5 x-rays. One lateral, another P/A and a prone postition x-ray. After the fitting we got another P/A and another lateral. I was really surprised we had to have so many !!! Nonetheless, I was pleased with radiology at St Justines because they used a lead jacket with each x-ray and they did P/A rather than A/P. Also, they use digital x-rays with no hard copies so that reduces the x-ray exposure. I wonder how many x-rays we'll have for the followup in a few weeks time ???? I don't know if so many x-rays is really necessary.

gerbo

11-10-2005, 08:58 AM

Pat,

I don't know if so many x-rays is really necessary.

they do all make sense to me for an initial assesment, but i would only expect one PA in brace for follow-ups with only additional ones if things change significantly.

are you nice and chilled currently? talked to your other consultant yet re spinecor?

best wishes

gerbo

Celia Vogel

11-10-2005, 09:50 AM

Gerbo,

Do you mean, am I calm and collected ???? NO WAY !!! :eek: We saw our local orthotist yesterday and he was not too pleased with our decision to go with the Spinecor !! However, the local ortho doc is very supportive of our decision to go with it. Oh well, you can't please everyone.... We go for followup in December so we'll see.

gerbo

11-10-2005, 10:01 AM

[QUOTE=Celia Vogel]Gerbo,

However, the local ortho doc is very supportive of our decision to go with it. QUOTE]

you mean mr nottomcruise?, turns out to be nice and friendly and helpful????

(and handsome after all??)

Celia Vogel

11-10-2005, 10:58 AM

gerbo

11-10-2005, 11:15 AM

Actually, he's turning out to be quite a nice doc :) From everything I've heard about him, he's quite brilliant. He'll never be the same as Dr. Hedden but hey.... can't complain ;) I don't know if we'll continue seeing him or just switch to St. Justine now that Deirdre is being followed by Drs Rivard and Coillard...only time will tell.

How about you ? Will you still continue to see the old ortho or switch to Mr Mills ?

he's quite brilliant and he is ok with the Spinecor? Good sign! (for me as well)

old ortho consultant is rude, arrogant, not interested and i don't think he likes me either, so shall we stay with him?? at least he is local, so it depends i think

mr mills is an orthotist, i.e. not an orthopedic consultant. If the spinecor works out well *pray, pray* we are likely to switch to a consultant who knows about it and is happy to prescribe it

cyprusmom

11-10-2005, 04:17 PM

I'll ask these questions to mr mills, the manufacturer of spinecor, when i meet him in december for lisanna's assesment

now i've come to think of it, any other questions anybody wants me to put to him??

Yes, please ask him, since he takes forever to reply to any e-mails, if any spinecor specialist around the world could do the follow up on a patient. I was told that all the initial information and progress goes to the headquarters in Canada? Do they all have access to that?

pat

11-10-2005, 04:31 PM

No luck at the dance store, he looked thru all his catalogs for bodysuits w/snaps, I'm thinking I might just get the bodysuits, and have a tailor create a bodysuit w/snaps! Ta dum! pat

cyprusmom

11-10-2005, 04:36 PM

Has anyone been to the shriners after having the spinecor fitted? What is their approach to it?
We are scheduled to see them in April when they come to Cyprus and offer free assements and where needed treatement in the US. They are very highly regarded here but I am afraid they are very much pro-surgery and probably pro rigid bracing. Am I correct?

MATJESNIC

11-10-2005, 04:57 PM

Pat,
I'm so glad your daughter's doing well with the Spinecor. It is really not a huge adjustment for them because they wear all of their same clothes, do all of their activities in it and it doesn't seem to be uncomfortable, for the most part. If it works for Nicole, I will be spreading the word. We asked Dr. Deutchman whether we should keep Nicole out of the brace for 24 hours. He seemed to indicate that there was no definite answer as of yet. We told him we would prefer to do it that way. So in Dec. she will get x-rayed without the brace after 24 hours of brace-free. Then we will put the brace on her and get another x-ray. All of the dance bodysuits in our area are long-sleeve only. I don't know why. Meanwhile, I am having 4 more bodysuits from Spinecor shipped to me. Nicole really likes them. How is your 14-year old doing after her surgery. What has the recovery been like? Any restrictions? Are your girls posting on SpineKids? The kids are so wonderful and supportive of one another. Take care, Melissa

Hi Melissa! My oldest daughter is almost 14, she had fusion surgery a year ago, my 9 year old's spine is straight as can be; believe me we check often!! :)

Hello everyone else! Trying to keep up with all the new posts! I'm heading down to a dance store tommorrow, maybe I'll be able to find dance bodysuits with the snaps on them. And no, my daughter's not wearing anything under her bodysuit either, otherwise she wouldn't be able to go the bathroom w/o removing EVERYTHING! Thanks for all the great tips/postings!

Today, almost a week later, she's wearing it 22 hours a day, without a single complaint!

I'm curious, when you all go back for your re-checks, are you getting x-rayed (again) in brace, or out of brace, and if it's out of brace, how many hours out before the x-ray is taken? Pat

gerbo

11-11-2005, 09:13 AM

if you look on the spinecorporation website, you'll see that the recommendation is for x ray assesment in and and out of brace before starting treatment followed by PA xray in brace at 1,3 and 6 months, followed by 6 monthly xray in brace (PA), lateral xrays in brace only once a year.

States that x ray out of brace should not be necessary until weaning.

does make sense to me

gerbo

pat

11-11-2005, 11:28 AM

I'm puzzled, don't we all already know the correction we're getting w/the brace, why continue to x-ray w/brace on - - - isn't the big question whether the brace is truly correcting/stopping the curve when it comes off . . . Someone help, I feel very dim :confused: Unless, of course, they continue to readjust/manipulate brace . . . I guess that might be it ?? With hard brace, we always took it off 24 hours before x-rays to see truly what spine was doing.

Yes, Dr. Rivard also told us laterals only once a year.

Melissa, my post fusion kid is really doing great, recovery was nowhere as bad as we anticipated. Spinekids is a great site, I'm totally in awe of those girls, they are so supportive. Thanks again, continuing to learn so much w/you guys! Pat

gerbo

11-11-2005, 11:38 AM

the claim is that the level of adjustment you achieve (in brace) in about 6 months is more or less the level you end up with once the brace comes off so many years later, so correction is much more permanent as with hard brace (where you kind of get back to where you started with)

I do not think that a picture out of brace will tell you a lot, because I doubt whether the spine/muscles/ligaments have had time enough to permanently adjust themselves.

so contrary to the hard brace, it is the correction you achieve in the brace what needs to give you your hope(?) and confidence(?) (you know what i mean)

Frequent adjustments must be a feature of the brace, with recommended checkups at 1 month and then every 3 months.

best wishes

gerbo

cyprusmom

11-11-2005, 02:00 PM

Speaking of frequent adjustments to the brace I wonder about the strength of the straps. I just received two of them in the mail to replace because the snap would come lose. Meausuring the old number 4 with the new one....it is already 3-5 centimeters longer and that only in 3 weeks of wearing it!!

Celia Vogel

11-11-2005, 05:24 PM

Oh geez....I never even thought of stretching of the bands !! The bands can be adjusted up on the shoulders, right ??? I wonder how much stretching is reasonable ? Another worry to ponder......

MATJESNIC

11-11-2005, 08:32 PM

Ladies,
This is all so interesting to me. I, too was under the impression that we should care more about the spine without the brace than with the brace. I have to say that when we went for our 1-month check-up, they took one x-ray in the brace and it was up 2 degrees. Dr. Deutchman said it meant nothing and was not at all concerned. I wasn't concerned because it was still a great correction in the brace and I didn't think it really "counted" when you had it done in the brace.
It really is confusing to me. I know the philosophy with Spinecor is not at all like the philosophy behind hard bracing. The Spinecor is not squeezing the spine straight. But for some reason it still doesn't make sense. When I had spoken to people whose curves were being reduced with Spinecor, I am now wondering if they were talking about in-brace degrees. I know I am rambling!!!
I am also constantly thinking about the bands and whether they are functioning as well now as they did when we were last in New York. All I know is, I keep touching Nicole's left shoulder blade to see if it is still sticking out, and it is. Anyway, let's continue to keep in touch! Melissa

MATJESNIC

11-11-2005, 08:42 PM

We took Nicole to the Shriners in Phila, Pa. for a 2nd opinion. Our first opinion was with an ortho from Temple who prescribed the boston brace. The ortho basically said that the hard brace has been around for a long time and didn't really know enough about Spinecor to recommend it. But he said that he respected our decision and that we should stick with one thing and not go from doctor to doctor to ask everyone's opinion. He said that if it didn't work and Nicole needed surgery that we should not feel guilty or beat ourselves up over it.
I believe there is a Shriner's in Erie who is involved with Spinecor.
Melissa

MATJESNIC

11-11-2005, 08:47 PM

Pat,
Does your daughter like the Spinecor bodysuits? Nicole loves them. When I tried different ones, she was even upset that the tree was missing. She said, "I always know where to put the belt by looking at the tree." Having snaps put into a bodysuit is a great idea. Melissa

Celia Vogel

11-12-2005, 08:54 AM

Melissa,

I'm under the impression that it's the inbrace correction that's important and I'm happy to learn from all of you, that there will only be one inbrace x-ray at the next followup ! As Gerbo said, the inbrace correction after three to six months (in general) is the correction that can be expected at the end of treatment after weaning from the brace. So.... Nicole's inbrace correction is somewhere around 25 degrees ?

Celia

MATJESNIC

11-12-2005, 12:17 PM

Celia,
I just asked my husband if he remembered and he thinks it was 24 degrees on the day of fitting and it definitely went up 2 degrees the following month. She has a 37 degree curve without the brace. What I don't understand is why I was told that most kids only get about a 5 degree correction when they first put on the Spinecor brace. At least I think that's what Dr Deutchman said. He was really excited about the 24 degrees. And he has never been the type to make promises or tell us this is definitely going to work for Nicole. He has been very honest about not knowing what's going to be. The only time he showed any enthusiasm was when she got the 24. Do any of you know anything more about this? Is it true that most kids don't get a huge decrease on the day of the fitting? Melissa

Celia[/QUOTE]

cyprusmom

11-12-2005, 02:29 PM

Hi everyone,
yes I am constantly checking and wondering how well the bands are working. Especially since the specialist who saw my daughter and originally prescribed the Boston said that when he sees her in January and if there is no improvement with the spinecor she will have to get into the rigid one.
Now the orthotist thinks that the only reason he said that is because the spinecor is not fully licensed in Greece......Ahh, I want to scream...

Also, her inbrace correction is only 5 degrees which I was told was acceptable. Melissa,your daughters correction is amazing. I guess my daughter proves your doctors opinion about the initial degree of correction. I also got no promises for anything from any doctor, they say that with my daughters Risser 0 and her close to 40 degree curve anything can happen. I check her (opposite to your daughters shoulder blade) right blade that is still sticking out with the brace on and I wonder. The spinecor works slower but more permanent is what I was told. It needs more work, exercise, movement.She does the spinecor physiotherapy exercises for her type(right thoracic III) and I am beginning to understand more about the philosophy of it. I just hope she shows improvement by January....

cyprusmom

11-12-2005, 02:37 PM

Oh geez....I never even thought of stretching of the bands !! The bands can be adjusted up on the shoulders, right ??? I wonder how much stretching is reasonable ? Another worry to ponder......

Celia, the orthotist marked 3 lines on the velcros and said to use my judgment to adjust their strength as time passes. Ofcourse that scares me a bit....whether I would be doing it right.

MATJESNIC

11-12-2005, 03:12 PM

Celia Vogel

11-13-2005, 02:03 AM

Celia, the orthotist marked 3 lines on the velcros and said to use my judgment to adjust their strength as time passes. Ofcourse that scares me a bit....whether I would be doing it right.

Very interesting ! Were the three lines marked only on the shoulder velcros or all four ? I'm also afraid to tighten things on my own for fear that I may be doing something to her balance, but if the straps get loose over time it would make sense to tighten them a little. I don't know if this is the last page allowed on this thread and we may have to continue our discussion on a new thread soon :D

Melissa,

We weren't given any exercises to do and I meant to ask, but it was such a whirlwind day that I forgot ! Is there a booklet that shows which exercises should be done ?

MATJESNIC

11-13-2005, 08:49 AM

I think it's good that you were given 3 lines and told you can adjust the bands. We weren't told to adjust them. I think our girls have such a great feel for the brace that they can tell us when something is starting to feel loose. I wish I lived closer to the Dr. so that I could just pop right in with Nicole and see if she needs anything adjusted. It would be a shame to be going through all of this and not having the bands work to its capacity.
Celia,
Each child has her own exercise program set up based on her curve. At our office, we have a doctor (not Dr. Deutchman), but a chiro whose specialty is neurology, etc. Most of the exercises are focusing on putting her in her "corrective position" on a ball or standing up. She also has a wobble board to work on balance in her "corrective position."

I know this is off topic, but I hope you don't mind my sharing some good news. My son Matthew got his first acceptance into college yesterday. He has been accepted to Penn State, college park, his first choice. It is about 3 and a half hours away. We all have so much good in our lives, but obviously this is a forum where we are focusing on scoliosis. Anyway, last night, after midnight I was waiting up for him and on the Discovery Channel was a show called Extreme Surgery. Guess what the surgery was? That's right! I watched an 11-year old having the fusion done. I'm glad I watched because I needed to see what could be a real possibility for Nicole in the near future.
Anyway, I have written quite enough!!! Take Care, Melissa

Very interesting ! Were the three lines marked only on the shoulder velcros or all four ? I'm also afraid to tighten things on my own for fear that I may be doing something to her balance, but if the straps get loose over time it would make sense to tighten them a little. I don't know if this is the last page allowed on this thread and we may have to continue our discussion on a new thread soon :D

Melissa,

We weren't given any exercises to do and I meant to ask, but it was such a whirlwind day that I forgot ! Is there a booklet that shows which exercises should be done ?

cyprusmom

11-13-2005, 01:52 PM

Hi there,
I saw your daughter on SpineKids and she and Nicole have a lot in common. She is very excited to have a new friend who lives so far away and has so much in common with her. It seems as though their curves are similar, as well. I guess the true test will be what is happening over the next 3-6 months. I am sure I mentioned we are going back Dec 28. Anyway, Nicole always complains about doing the exercises, but they only take minutes to do. I do not believe that all Spinecor centers incorporate the exercises with the brace. I am not sure. Thanks so much for replying and confirming what I thought. Talk to you soon, Melissa

I am so grateful you mentioned spinekids. My daughter is so excited and amazed that there are so many other girls with "the same problem as hers" she told me she felt much better now! Those kids are amazing on spinekids.

How far is the doctors' office you are seeing in December? Is this your first or second follow up? We are flying to Greece on December 13 for the first orthotists follow up and then in January for the orthopedic visit.

I have to remind my daughter to do the exercises, I can't say she is too fond to do them. I've taken her 4 times to a physiotherapist who makes sure she does them right and corrects her. A few more visits and then she can do them at home. We got a ball and a streching band. They are very precise correction exercises with small moves that use the same forces that the spinecor does. I thought spinecor and these exercises go hand in hand, Celia I think you should ask about them. Did they recommend some other form of exercise? I am very interested to know. I have looked into yoga exercises and I am expecting a yoga book from amazon that has a special section on scoliosis. I also massage my daughters back almost daily and she loves it. I believe soft manipulation would help their muscles, nerves, bones....Also what do you think about swimming? Our orthotist recommended rollerblading!! To keep working on her balance....Any other ideas?

gerbo

11-13-2005, 02:41 PM

it was up 2 degrees. Dr. Deutchman said it meant nothing and was not at all concerned.

clearly a couple of degrees either way doesn't mean a thing as this falls within the "margin of error", of the measurements

gerbo

11-13-2005, 02:58 PM

Also what do you think about swimming? Any other ideas?[/QUOTE]

our daughter, lisanna, does

1) lots of swimming (hopefully to keep the spine flexible and strenghten the backmuscles)
2)lots of ballet (for the same reason, and because she loves it)
3)torso rotation exercises against resistance (acc to Vert Mooney)
4) lateral/sideways stretching towards the convex side of the curve, the idea being that in the curve the ligaments on the concave (hollow) side of the curve have shrtened and need stretching to allow the spine to move towartds a more neutral position (well, that is what one hopes)

gerbo

MATJESNIC

11-13-2005, 04:04 PM

Those exercises with the bands seem like a good idea. We bought a wobble board to work on balance. We were told to buy one. Nicole goes to the chiro 2 times a week for electric stim and sometimes massage. I was told that ballet is wonderful for scoli and she does that 2 x a week ( in addition to all her other dance classes) with her brace on. Nicole's appt in Dec is about 1 and a half hours away in New York City. Christmas in N.Y. is amazing, so we plan on doing some fun things while we are there. This is our 2nd follow-up. We got the brace in Sept, went back in Oct, and will go at Christmas. After that it is approx every 3 months. Everyone says swimming is wonderful. Personally, roller blading is not Nicole's strength. Our luck, she would fall and break something!!! I would rather stick with the wobble board for balance. It's really fun, sometimes I go on it, LOL!! Nicole just showed me her map from social studies and she found Cyprus on it. She is going to share in school tomorrow that she has a new friend who lives there!!
Melissa

cyprusmom

11-14-2005, 02:57 PM

What exactly is a wobble board??? It sounds like fun! I wonder if it's been around a long time or is a new invention. My daughters rollerblading skills are non-existing too but she is willing to give it a try.
I'm glad Nicole found Cyprus on the map. My daughter sent her an e-mail I believe.

Celia Vogel

11-16-2005, 02:52 PM

Celia ... Did they recommend some other form of exercise? I am very interested to know. I have looked into yoga exercises and I am expecting a yoga book from amazon that has a special section on scoliosis.

Hi,

Sorry I didn't reply sooner to this ! We weren't prescribed any form of exercises to do, but I'm sure if I had asked we would have been given something. It was a very busy day and a long LONG trip to Montreal and my mind wasn't sharp :rolleyes: Next time we go, I'll be sure to ask.

pat

11-17-2005, 01:28 PM

Hi, We didn't get "prescribed" any exercises either; have to find out more. We have ordered and use the Elise Miller's Yoga for Scoliosis.

My post fusion daughter swam competitively (alot!) and it put her in great shape for surgery, very flexible, great correction. But helping the curve . . . . I don't know. Pat

MATJESNIC

11-17-2005, 04:32 PM

When you think about the philosophy behind Spinecor it makes sense that they want the kids to be extremely active while in the brace. I guess the brace is putting them in their corrected position, so to speak. The exercises are supposed to be helping the body to accept the correction. I don't think I am explaining it correctly. Anyhow, I know ballet and yoga are both excellent. How is your daughter enjoying the yoga. I forget, do either of your daughters come onto SpineKids?
Melissa

cloggerx3

11-19-2005, 04:23 PM

yoga sounds fun. i bet it really does help. hmm, i wonder why yall werent prescribed any exercises. because my doctor said that they were very important to make the spinecor do its thing.

LindaRacine

11-19-2005, 08:49 PM

Clogger...

I don't think your doctor has any way of really knowing that, because as far as I Know, there has been no research of any exercise program in conjunction with the Spinecor brace.

--Linda

cyprusmom

11-20-2005, 03:20 AM

We got an official spinecor corporation physiotherapy programme suitable for my daughters type(right thoracic III), when she was fitted with the brace. Also, like clogger said our orthotist( who was trained in canada by spinecor) and physiotherapist said that these exercises are cruicial to the braces' success.Ofcourse the end result remains unknown....we are just trying to do the best we can.

Back to Melissas comment about the philosophy and staying active. I think we were all told that spinecor is not for kids who sit infront of the tv all day.....At least this is the first think I was told when I inquired for spinecor.They have to stay active with any sport they have been practising(well, no extreme sports!!) AND do the specific exercises.
Clogger, do u do other sports as well or dance?

I am slowly helping my daugher with some simple yoga poses for streching and relaxation. She enjoys it and it suits her personality too. But ofcourse she has got her moments when she'd rather do something else.... :)

AILEA

11-21-2005, 05:09 AM

I´m a spanish mum, and my 14 years old daughter has a spinecor brace since december. The doctor didn´t tell us nothing about special exercises. He only tells her to play all the sports she likes; football, basketball,¨...with the brace.
I saw several weeks ago, in the spinecorporation web, that there is a program of exercises, that childs with this brace should do. I ask myself, why our doctor has never told us.

Celia Vogel

11-21-2005, 02:32 PM

Hi Ailea,

I don't think the exercises are crucial to the Spinecor brace, otherwise Dr. Rivard and Coillard would have said something. I think by virtue of wearing the brace and being active 'in' the brace, that it's contributing to the corrective movement and neurological imprinting. Oh, it's sooooo great having another mom from a different country joining the discussion

celia

cyprusmom

11-21-2005, 02:33 PM

Hola Ailea!
You didn't say what is your daughters' curve, I am wondering if it has anything to do with the prescribed exercises. But if I were you I would ask the doctor /orthotist who fitted your daughter with the spinecor. It seems like you are not the only one who didn't get the exercises.
( I am just curious what part of Spain you are writing from, I lived in Gijón for 3 years and 6 months in Huelva....)

AILEA

11-22-2005, 05:07 AM

Hello cyprusmon and Celia!

My daughter´s curves were 35º L. and 18º D. in September of 2004, Before treatment. In August of this year, she was 24º L. and 22º D..
The fact, it´s that I´m not sure about wich brace has done this little correction, because for several months she has been using a Cheneau brace. This is a brace that it´s used in some countryes of Europe; Spain, Germany, France...and has great results, not only stopping curves, also improving them.
The in-brace curves with this one are 14º and 16º
I´m interesting in exercises for scoliosis with or without brace, because my daughter doesn´t do any sports "in" the brace, and when she has try, she says she can´t move properly and gets hot ( :mad: and ungry).
It´s great to share this with someone who knows and understand your feelings.
Cyprusmom: I live in a little city in the north of Spain (Soria), quite far from Huelva or Gijón where you lived.

gerbo

11-22-2005, 07:41 AM

Hello cyprusmon and Celia!

for several months she has been using a Cheneau brace. This is a brace that it´s used in some countryes of Europe; Spain, Germany, France...and has great results, not only stopping curves, also improving them.
The in-brace curves with this one are 14º and 16º
.

why did you change??

Celia Vogel

11-22-2005, 08:33 AM

Gerbo,

I can't answer for Ailea, but if you asked me :D .....I would say: sure the Cheneau brace has had good results combined with the Schroth therapy - which is what Dr. Manuel Rigo in Spain prescribes. HOWEVER, the Cheneau brace is EXTEMELY bulky and shows through clothes. If you're a teenager, I don't think that will be a great sell point. :)

By the way how is everyone doing with the Spinecor ? I find that covering the plastic pelvic section with moleskin really reduces the amount of chafing around the legs. Gerbo, when is your appointment with Mr. Mills ? I expect a thorough report after the fitting :)

gerbo

11-22-2005, 09:56 AM

thanks celia, for helping me to deal with my insecurities (I had looked at the cheneau brace as well, they are very keen on that one in germany)

appointment 16/12, you'll know all about it after :eek: :eek:

AILEA

11-22-2005, 10:50 AM

Celia answered exactly, what make us change to spinecor. The Cheneau is so bulky that my daughter never went out with it on.
Another point, is that I think that muscles must work, and the body must "learn" to get a great posture, in the day by day.

gerbo

11-22-2005, 11:07 AM

thank you for answering as well, no way would my fashion conscious daughter accept a bulky brace, so glad to know that that isn't really an option. :D :D

ps, i do wonder whether the best combination would be to have a highly correcting (or overcorrecting ) hard brace at night (to stretch the ligaments a bit) and a spinecor in the daytime (to work the muscles) Would that make sense??? :confused:

AILEA

11-22-2005, 12:16 PM

Gerbo, I totally agree with you. I have been thinking about that option for months. In fact, I asked our ortho, and he answered that my daughter´s curves were too big. Perhaps he didn´t understand me, and he thought i was talking about only wearing a night-timebrace.
In the other hand, two braces means double radiation, and this is something that worries me.
I have seen in spinekids a girl who has a boston and a night-time brace, so perhaps it´s not a bad idea.

cyprusmom

11-22-2005, 02:15 PM

By the way how is everyone doing with the Spinecor ? I find that covering the plastic pelvic section with moleskin really reduces the amount of chafing around the legs. Gerbo, when is your appointment with Mr. Mills ? I expect a thorough report after the fitting :)

Celia, did you cover the thigh straps with moleskin as well? It's such a great idea because my daughter insists on wearing bike shorts under or she gets pinched by the thigh straps.And that makes the bathroom visits a bit more complicated and timely... :rolleyes: I wonder if she puts them too tight some times but she says thats how she was told...
Other than that she has one band, number 4, that turned out to be faulty and kept coming off the snap. It was immediately replaced but today number 2 came off while doing PE :mad: I wonder if it happened to anyone else?

Ailea, I imagine your daughter is relieved by the change from the chenaeu to the spinecor! I hope her correction continues. It is so true about the hard braces and how diffiult it is to hide it, although I heard of many-many kids that just get used to it. Our orthopedic said that this is where the spinecor has more success: The kids will wear it for the prescribed hours.
I just hope my daughters' curve proves positive reaction in it when we go for our first follow up in 3 weeks....I am very nervous cause her in-brace correction is only 5 degrees.

MATJESNIC

11-22-2005, 05:25 PM

Hi Ladies,
Where do you get moleskin? From a store that sells crafts and materials? CyprusMom, No we have not had any trouble with snaps coming off. I'm sorry you are experiencing that. Nothing new here as far as scoli is concerned. It is Thanksgiving on Thurs so the kids are off from school until next Monday. Take Care, Melissa

pat

11-23-2005, 05:40 AM

Hello!
We bought the moleskin, but we also saw right next to it in the same grocery store aisle, fluffy sheepfur like stuff (sorry threw out the package don't know it's official name!), but she's been using that. Every now and then her hip still bothers her there, she's a real thin kid. But it seems to be getting better. Pat

Celia Vogel

11-23-2005, 05:56 AM

Melissa,

I know they sell moleskin in pharmacies, also check local hospitals. The moleskin is working really well for us and the chafing has almost completely disappeared *yahoo* Have a GREAT Thanksgiving !!! We Canadians celebrate Thanksgiving in October. Congrats on your son's acceptance to Penn State :)

Cyprusmom,

We haven't had problems with the snaps but Dr. Coillard told me before we left that if we encountered any problems that a local shoemaker could probably fix it, if not then to call them and they would FedEx the required piece. :)

MATJESNIC

11-26-2005, 11:04 AM

Celia,
Thanks for the info about the moleskin. We had a great Thanksgiving including taking the train to N.Y. to see a Broadway show. Ever been to N.Y.? My girls and I went to Canada when they were part of a children's chorus a few years back. We had an amazing time. Melissa

Celia Vogel

11-29-2005, 09:40 AM

Melissa,

New York sounds wonderful ! But alas, I've never been there. The only States I've been to are Texas, Tennessee, California and Washington State.

The moleskin is working really well for us, I highly recommend it ! Next week is our followup visit, so I'm getting a little nervous. I'm thinking of purchasing an extra pelvic base with straps etc, so that we could have an extra clean set when needed. Do any of you know how much something like that would cost ?

Take care everyone, and think postive !!!

celia

gerbo

11-29-2005, 11:09 AM

so is this literally a skin of a mole (i.e. this animal tunneling through the earth)?? And do you just put it nbetwen strap and leg? Just trying to visualize this.

If you are getting a little nervous, I am getting very nervous, as we have our first assesment in 2 1/2 weeks, and for that matter from 2 weeks onwards Lisanna will be bracefree for a whole three days prior to appointment. All the things she is going to do, all the clothes she is going to wear....

I am thinking positive though!! :cool: :cool: :cool:

Celia Vogel

11-29-2005, 12:17 PM

Gerbo,

Your post made me laugh out loud :D I hope this picture comes through, this is what moleskin looks like:

http://www.myfootshop.com/images/products/822_moleskin.jpg

I think they generally use moleskin to treat foot conditions :confused: Anyhoo....what I do is I wrap the lower edges of the plastic pelvic base with the moleskin so it doesn't cut into her thighs. We didn't have a problem with the pelvic base when she was standing, only when she sat down. No problems to report with the thigh bands or the crotch straps. We were instructed that the thigh bands could be adjusted to comfort level and didn't have to be fastened tightly around the legs. I think the important thing is the way the thigh bands and crotch straps are attached to the pelvic base and I haven't touched that at all - even for washing. I wash the whole unit by hand and hang to dry by our radiators- of course it's not the same as hanging it out to dry in the full sun by the Mediterranean sea ;)

gerbo

11-29-2005, 12:37 PM

Gerbo,

Your post made me laugh out loud )

okokokokokokok, cannot be clever all the time, thanks for the illustration :) :) :)

MATJESNIC

11-29-2005, 03:16 PM

Thanks for the info regarding the moleskin. Nicole hasn't been complaining. But if she starts to, I will definitely get some. Our Dr. told us that in some countries the patient gets 2 braces so that when one is being washed the other can be worn. I agree with you that I am not touching the straps even though our Dr. showed us how. My husband replaced them once with new ones they gave us and it took him forever!!! LOL! I also hand wash the whole thing. I also wipe down all the straps daily with wipes to freshen them up. That is funny that you have been to many states that I have not been to. I would love to go to Texas, Tennessee and Washington State. Anyway, I wish all of you the best of luck at your appts. We are one month away from ours. I look at her back and it does not look any better. I know that you can't tell by looking, but I am preparing for anything. Melissa

Celia Vogel

11-30-2005, 09:25 AM

Melissa,

I really hope it's good news for you in December ! By things not looking any better, do you mean the rib hump ? I don't know how it works for adolescent children, but for young children who grow out of their scoliosis - the rib hump/gibbosity doesn't correct until a few years later, long after the spine has resolved.

pat

11-30-2005, 09:33 AM

wow, that's interesting, I never knew that; thanks Celia!
pat

MATJESNIC

11-30-2005, 11:13 AM

Celia,
That is amazing. I have never heard that. I'm not sure if Nicole has a rib hump because I don't know what that exactly means. When I look at her back, her one shoulder blade sticks out. The other one does not. When she bends over, one side is higher than the other. Is this what you mean?
Melissa

gerbo

11-30-2005, 01:49 PM

Melissa,

the rib hump/gibbosity doesn't correct until a few years later, long after the spine has resolved.

that doesn't make sense to me at all, isn't the ribhump a reflection of the rotation of the spine and therefore directly connected to the curvature, hence if the spine is straight/ derotated, >> the hump should be gone??

explain please

Celia Vogel

11-30-2005, 02:39 PM

What ???! You want a technical explanation ??! Do I look like a doctor to you ? LOL !! :D Gerbo, it's just what I've read re: young children. I don't know if the same would apply to adolescents, it might.

The rib hump is a reflection of the rotated vertebrae, however, for some reason it doesn't correct at the same time as the vertebrae. It takes time for the ribs to shift back..... I don't know the technical reason for this. Sorry. Can someone ask their doctor about this ???

cloggerx3

11-30-2005, 07:05 PM

Celia,
Have you asked for a smaller pelvic base? My daughter was having the same problem and the doc put her in a smaller pelvic base. It made a huge difference.

cloggerx3

11-30-2005, 07:08 PM

Melissa,

Did your daughter have xrays after 1 month? We are going back on Saturday and it has only been 5 weeks. Did the doc tell you to leave the brace off before going in for xrays? Also did you have to pay for the replacement straps? I don't see how this brace is going to last 2 years.

Lori

MATJESNIC

11-30-2005, 10:00 PM

Lori,
We went back after one month but that is mostly to make sure we are wearing the brace correctly. He did take one x-ray in the brace only. He gave us some crotch straps that he had in his office. They were actually samples so there was no charge. I know what you mean about the brace. It is already looking pretty worn out. Are you going to New York?
Good luck, Melissa

gerbo

12-01-2005, 01:36 AM

What ???! You want a technical explanation ??! Do I look like a doctor to you ? ???

You might have a good pedigree as I do clearly remember the bible of herbal medicine by a dr Vogel, a swiss dr, circulating round our house when i was young (er)

If it it true what you've read, than it must be due to anatomical changes in the way ribs attach to the vertebrae which have developped secundary to all other changes and which take time to revert, even once the rotation is corrected. So rib hump must be caused by more than just the rotation, cannot think of another explanation.

Also, it does make sense that anything that applies to infantile/juvenile scoliosis should also, in principlke, apply to adolescent scoliosis.

Celia Vogel

12-01-2005, 06:00 AM

You might have a good pedigree as I do clearly remember the bible of herbal medicine by a dr Vogel, a swiss dr, circulating round our house when i was young (er)

Gerbo,

Although our family is very much into natural remedies, there is no relation to the Vogels you refer to. My inlaws are German not Swedish and I think Vogel means bird in German :)

gerbo

12-01-2005, 07:15 AM

My inlaws are German

Do they still live in Germany, or did they move to Canada??

not Swedish

just for the record, swiss relates to people from switserland, not from sweden :p :p (I know it gets very confusing for people from USA/Canada, all those different tiny countries in Europe "why can they not be like us, big and powerful" ;) )

and I think Vogel means bird in German

yes, as it does in dutch

Celia Vogel

12-01-2005, 08:05 AM

They live here in Canada :) They speak English with a thick German accent. My husband was born in Montreal so he doesn't have the accent - very Canadian.

Wow, I didn't even pick up on the distinction between Swiss and Swedish ! Thanks for pointing that out, and ahem.....it's NOT because we think of ourselves as big and powerful - certainly NOT Canadians :D

Celia Vogel

12-01-2005, 08:06 AM

Celia,
Have you asked for a smaller pelvic base? My daughter was having the same problem and the doc put her in a smaller pelvic base. It made a huge difference.

I don't know if they carry smaller ones ? My daughter is only 5.

Celia Vogel

12-09-2005, 10:00 AM

Hey Gang,

I just wanted to give you all a quick update on yesterday's follow-up appointment in Montreal......Deirdre's curve is now "1" degree in the brace !!!!!!!!! So I guess you can say things are going really well for us. :p During the past five weeks I noticed that strap #3 and #4 were getting a little loose and not really pushing into the apex as much, so I used judgment and tightened it a little with the velcro fasteners near the shoulders. I found out from Dr. Coillard yesterday that this is O.K. I was instructed not to adjust strap #1 or #2 ( which I haven't) Dr. Coillard actually tightened strap #3 and #4 a little more. The next followup appointment is in five months. I am so thankful things are going well for us and I hope to hear the same from all my internet friends *cheers*

MATJESNIC

12-09-2005, 12:14 PM

Celia,
YEAHNESS!!!!! I am so excited for Deirdre and you all. Can you remind me what her curves were before? Also, did they go down without the brace on, too? Nicole's straps seem loose too. But I don't know if I am allowed to tighten them by the shoulder. One time we did. Why are you only allowed to tighten certain ones? This is why I wish we had a dr. in the area. I would stop by weekly just to make sure everything was right. Great News!!!
I have some news to share that if off the subject. My sister just received the picture of her new daughter from China. She is 6 months old. We got a real Cutie Pie. She and her husband expect to get her sometime in January. Off the topic, but I need to tell the whole world!!!
Celia, I am so happy for you all. Have a great day.
Melissa

Celia Vogel

12-10-2005, 08:27 AM

Melissa,

Deirdre is not the typical case, she's an infantile idiopathic scoliosis baby. She just turned 5 in October. Her curve at diagnosis 3 1/2 years ago was 60 degrees and through serial casting and now the Spinecor brace we are able to maintain her curve at "1" degree *yeah !!!!* I think it's safe to say that casts are no longer in Deirdre's future :D

In Deirdre's case, strap #1 and #2 criss-cross at the front and that area is already snug, so there is no need to tighten it even more. Strap # 3 and #4 are intended to push against the apex of her curve (which is a left thoracic curve) and both stretch under her left side. Cyprus mom got me thinking that the elastic bands stretch over time and may need to be tightened a little - which is what I did - and Dr Coillard tightened them even more on Thursday. I know what you mean about having a dr close by, it's not easy but what can we do ????

Wonderful news about your sister's adoption !!!!! Such an exciting time....

MATJESNIC

12-10-2005, 05:18 PM

Celia,
I'm not sure if you would know this but, Nicole's left shoulder blade sticks out. Does that mean she has a left curve? Also, would a spinecor brace have helped Deirdre from the beginning if you would have known about it. Or do you think the cast would have still been necessary?
Melissa

Celia Vogel

12-11-2005, 05:40 AM

Melissa,

I'm not sure about Nicole, but left sided curves in adolescent children is rare - it's more common in infantile scoliosis. Our ortho at the time, Dr. Hedden stated that if the casts didn't hold her they would have to consider spinal fusion. Progressive infantile scoliosis is very hard to control. I think the Spinecor brace is intended for smaller curves.

Celia Vogel

12-11-2005, 06:18 AM

Melissa,

I was just thinking about your post regarding Nicole's shooting neck pain ! If Nicole's main curve is left thoracic, she should have an MRI to rule out spinal cord issues. I think it's common for Drs to request an MRI in teenagers with left thoracic curves. I don't mean to worry you, but if there is something going on with the spinal cord, no amount of bracing or surgery to correct the scoliosis will help until the spinal cord issue is dealt with first.

MATJESNIC

12-11-2005, 06:31 AM

Celia,
That is interesting that you should say that. Nicole went to two very reputable doctors and hospitals and I asked both of them is she needed any more tests such as an MRI. Both of them said "No." They said it was a typical, standard idio. scoliosis. Also, her local chiro said her curve was in her thorasic/lumbar area. Does that matter? Also, she only had that pain that one night. And it has not returned. Are you saying that you think she has a curve that is not common. Why hasn't any other doctor mentioned that if it is uncommon. We also go to her spinecor doctor in N.Y. and he never mentioned anything. Of course, it couldn't hurt for me to bring her in for an MRI anyway.
Thanks for your concern.
Melissa

MATJESNIC

12-11-2005, 06:49 AM

Celia,
My husband just came downstairs and I asked him which way Nicole' curve goes. He said "It curves to the right." Her left shoulder blade sticks out, but that doesn't mean she curves to the left. We took out the x-rays to confirm that. Like I said before, both reputable doctors said this was a typical scoli case. So it wouldn't make sense that she would have an uncommon curve. Thanks for your concern. I appreciate how all the Moms want to help one another.Thanks for your concern.
Melissa

cyprusmom

12-11-2005, 12:48 PM

Hello everyone,
it's been a while since I checked on the forum. What great news from Celia!!! This kind of result can give every spinecor user greater faith and hope...But what do you mean that your daughter is not a typical case? And with an original 60 degree curve? That is quite amazing! Do you think she will still have to wear it until she stops growing like our 11-12 year-olds? In any case I am very happy for you. I know how stressfull it is until you hear the outcome. I am taking my daughter for her very first follow up with the orthotic in 3 days and I am getting quite nervous...I have no clue what to expect although it is still early. I think this is mainly an adjustment-if needed- to the straps but still I want to hear something positive.

Melissa, my daughters' right blade sticks out and she has a clockwise rotation of the thorax which causes that. Her spine goes like a reversed "s" on the x-rays, if you get the picture and this is classified as right thoracic. That is interesting what Celia said that left thoracic is rare. Are you sure this is what Nicole has? Her in-brace correcion is quite good though, if I remember well, so should you really worry if it's left or right? The neck pain she had maybe you should check on it. My daughter had back pain long before we 'discovered' her scoliosis and also frequent headaches. They have almost dissappeared now.
Yes, I would love to have a doctor close by to check the brace too...at least we have this forum! :) I hope and wish for all of us to have positive results.

Celia Vogel

12-11-2005, 04:20 PM

Cyprusmom,

Let us know how the follow up appointment goes ! What I meant by Deirdre not being the typical case is that infantile scoliosis is very rare compared to adolescent idiopathic scoliosis. If she has to wear the Spinecor until she finishes growing I'm O.K. with that, since it's a very comfortable brace and her life is relatively normal right now. I suspect that with time, attempts will be made to wean her from the brace and see what happens to the curve.

Melissa,

Hey, we have to look out for each other ! :p Please check with a pediatric orthopaedic surgeon, if he/she decides to followup with an MRI make sure that the MRI report is reviewed by a pediatric neurosurgeon - I've read some real horror stories about misread MRIs! Here is a link to pediatric neurosurgeons:

http://www.aspn.org/

Sometimes if there is a spinal cord issue that is causing the scoliosis, once the problem is corrected the scoliosis may self correct to a certain extent. You are your child's best advocate ! I've heard this phrase so many times.... and it really is true !

MATJESNIC

12-11-2005, 06:01 PM

Celia,
Since both orthopedic doctors and Nicole's scoli doctor all said she had a typical case of id. ad. scoli and didn't need any tests done, I don't see any reason to question that. We looked on her x-rays and her curve is to the right. That is why the left blade sticks out. So I'm not going to worry about it. Thanks anyway, though.
CyprusMom,
Lots of luck at your appointment with Anastasia. I can't wait to hear how it goes. We have 17 days until we go to New York for our appt. I am going to keep Nicole out of her brace for 24 hours before we go. We will do brace-free x-rays first, then x-rays with the brace on. I am also so nervous. Nicole looks like she grew. She is tall for her age. She was 5'1'' when she was first measured in Sept. We just took our Christmas pictures and she looked almost as tall as her 15-year old sister.

Melissa

gerbo

12-12-2005, 02:46 AM

I am going to keep Nicole out of her brace for 24 hours before we go. We will do brace-free x-rays first, then x-rays with the brace on. I am also so nervous.

Why are you keeping her out of the brace for 24 hours? This differs from the Spinecor protocol where the only out of brace xrays are taken on assesment. I am sure you must have some reason for it, just interested.

Talk about nerves. "My" Lisanna has her first assesment with mr Mills, Spinecor manufacturer (and orthotist), this friday. This is our current "big hope" I am very tense, this could be good, but reversely, it could be so disappointing.......

gerbo

pat

12-12-2005, 06:26 AM

Hello all!
My daughter had her one-month check-up last week, everything's going well, she's at a "1" in brace, they tightened some straps and now we don't back for 4 months.
Melissa, I too, am quite curious to see what they are out of brace, my daugther has an appt in March w/her "regular" ortho, and I'm very tempted to keep the appt. and have her x-rayed out of brace. p

Celia Vogel

12-12-2005, 06:56 AM

Pat,

YAHOOOOOO!!!! Absolutely FANTASTIC news ! When were you there ? We probably just missed you ! :rolleyes:

pat

12-12-2005, 07:01 AM

Celia!!!!
I didn't go, Dad took her, I stayed home with the rest of the troops!!! They were up on Thursday afternoon.

It is wonderful, isn't it!!?? Thanks! Pat

Celia Vogel

12-12-2005, 07:06 AM

Pat,

Is your husband tall and blond ? There was a gentleman in the waiting room with a little girl from the U.S.

pat

12-12-2005, 07:08 AM

Celia!
This is great!
He's certainly tall (6'3"), but he's a redhead, and my "little girl" is a teen! So, I suspect it wasn't them!!! Pat

gerbo

12-12-2005, 08:49 AM

pat, can you remind you what your starting position was, i.e., what curve at what level how long ago??

Celia Vogel

12-12-2005, 09:52 AM

Pat,

You're in demand today ;) Any word on the Spinecor longterm followup study ? I know you mentioned it on another thread.

MATJESNIC

12-12-2005, 01:50 PM

Hi Spinecor Moms,
Pat, I am so happy for you. I remember you talking about your active daughter who likes to climb trees. But I can't remember what her curve was or what her initial correction was at the first appt. Please fill us in. Also, does she want to start communicating with Anastasia and Nicole? They are all 11 years old. But now I am getting confused. Gerbo, how old is your daughter?
In answer to the question about out-of-brace x-rays --- I don't remember if I said I wanted it done or if Dr. Deutchman wants it done. Even though Spinecor is a different brace, I need to know, for my own knowledge, what her curve is without the brace on. I wouldn't feel right only knowing what it is in the brace. If it goes down in the brace, does that mean the curve goes down out of the brace? I don't know. As far as the 24 hour thing, I suggested it to Dr. Deutchman and he indicated that there was no set rule about that as far as Spinecor is concerned. With a hard brace, that is definitely the rule. But he told me I could do it if I wanted. So that is why I am doing it.
I am still waiting for Special-Clothes to do the alterations on my bodysuits. When I looked in their brochure, it seems that most orders take 3-4 weeks because they don't keep a lot in stock. How is everyone doing with their bodysuit situation?
My daughter Nicole, upon finding out the cost of her brace, informed me that it was a rip-off. She, herself could have taken a bunch of bands and made the brace herself. "Now you tell me." I said. "Why didn't you tell me sooner that you were capable of making a Spinecor brace. I could have saved all of that money!!!!" lol !!! Nicole has been angry about her brace lately and has changed its name from Roxy to Crap. Cruddy, ridiculous, annoying, pest. I told her I liked the name because part of the reason I think she says these things is to get a reaction from me. Anyway, she says that if we find out the brace is working, she will change it back to Roxy. She also doesn't want to tell Dr. Deutchman about the name Crap because she doesn't want to hurt his feelings. Just thought I would share a little about my daughter today!

Melissa

Pat,

You're in demand today ;) Any word on the Spinecor longterm followup study ? I know you mentioned it on another thread.

pat

12-13-2005, 06:41 AM

[QUOTE=gerbo]pat, can you remind you what your starting position was, i.e., what curve at what level how long ago??[/QUOTE
My daughter has a right thoracic of 20 w/compensatory lumbar of 17. Her sister has had fusion surgery, so her risk of increasing is quite great. A month ago, in brace, her curve was 7, now it's 1. She's 12 years old. Melissa, I'll ask her about communicating w/Anastasia and Nicole, I think it would be neat, but she's not much of a computer person, she's a "mover!"
Melissa, I'm still waiting for my Special Clothes order, BUT, I've gotten all my bodysuits from Bodysuits.com, and they've been great, worked out beautifully, the owner was wonderful about fine-tuning just what we needed. I'm very pleased.
Celia, since I didn't attend last week's appointment, my husband didn't ask him anymore about the long-term study and when and where it will be published.
Thanks again everyone! You've all been so helpful!
Did I forget anything/anyone!!!?? pat

Celia Vogel

12-13-2005, 06:54 AM

Hey Gang,

I haven't got the body suits either, maybe she's swamped with all the orders :D Should I call her ? I really hope it's good news for everyone, such a great way to bring in the holidays ! I was just thinking about the out of brace x-rays and wonder whether it's really necessary at this point - I mean aren't they more relevant when growth is complete or attempts are made to wean from the brace ? What do you all think ?

MATJESNIC

12-13-2005, 06:58 AM

Pat,
That is great news!!!!! I am so happy for all of you. Thanks so much for the info. It was really helpful!!!! Take care.
Melissa

gerbo

12-13-2005, 07:00 AM

Hi Spinecor Moms,
But now I am getting confused.

Also about the fact I am a spinecor-DAD??

Gerbo, how old is your daughter? also eleven, going on 16 1/2. She is very happy today as for a whole three days she is not to wear her hard brace at all, in preparation for our spinecorassesment on friday.

Nicole has been angry about her brace lately and has changed its name from Roxy to Crap. general teenage tantrum or something specific about the brace?? (brace is a word not to be used in our house, lisanna hates it)

gerbo

12-13-2005, 07:02 AM

A month ago, in brace, her curve was 7, now it's 1. She's 12 years old. That is fantastic, and encouraging to know that the Spinecor clearly "has the power" to do something

gerbo

pat

12-13-2005, 07:17 AM

Sorry, my husband telsl me her curve last week in brace, was actually "zero," not one. Sorry, so she went from a "7" to a "0!" p

Celia Vogel

12-13-2005, 07:28 AM

Zero ?? Well, that's even better than "1" ! Why couldn't we be zero ? :mad: JUST KIDDING ! :D I can't understand this whole thing about naming braces, we just call it "the brace" What are you supposed to do, call it Georgie Porgie or something ? So I'll say to Deirdre...O.K. sweetie, let's go put on "Georgie Porgie" LOL !!! I'm in one of those moods today, sorry. :)

gerbo

12-13-2005, 07:35 AM

LOL !!! I'm in one of those moods today, sorry. :)

that is following a fair few bottles of champagne the last few days??? :D :D

cyprusmom

12-13-2005, 01:40 PM

Nicole has been angry about her brace lately and has changed its name from Roxy to Crap. Cruddy, ridiculous, annoying, pest. I told her I liked the name because part of the reason I think she says these things is to get a reaction from me. Anyway, she says that if we find out the brace is working, she will change it back to Roxy. She also doesn't want to tell Dr. Deutchman about the name Crap because she doesn't want to hurt his feelings. Just thought I would share a little about my daughter today!

Melissa[/QUOTE]

Melissa, I was laughing out loud when I read this! At least Nicole is keeping her sense of humor....Anastasia had her first blow up last night actually, hours before we were catching the plane to Greece to have the forst follow-
up with the orthotist. She was so tired after her dance class, her eyes were all red, she took a shower and she said: I don't like "spinecor" anymore and I will never put it on ever again!!! :mad: ....well, she took a nap(without the brace) and when she got up she walked straight to it and put it on without a word and no comment.And she was happy again.... :)
I am now writing from Greece. Tomorrow we are seeing the orthotist and I am hoping for just one little positive word...

Pat and Celia both of your daughters have such great results and it is just wonderful. Although my daughters curve is bigger and also has a thoracic curve I am still very hopefull about the spinecor after hearing your stories. I will let you know what the orthotists tell us tomorrow.......

MATJESNIC

12-13-2005, 01:49 PM

CyprusMom,
Nicole and I have been thinking about Anastasia all day. I can't wait to hear the news. Please try to give as many details as possible. I really appreciate it. Nicole is more similar to Anastasia because her curve is also large, 37. I think it is considered a thorasic/lumbar curve. I am not sure. But I will definitely ask again in a couple of weeks. Thanks so much for posting. Our thoughts and prayers are with you from a long distance in Pennsylvania, USA!!!!
Take care,
Melissa

MATJESNIC

12-13-2005, 02:02 PM

Gerbo,
LOL!!! You are right. I didn't realize you were a SpineCor Dad. I was not very observant because I just looked back at a previous post and the letter you received about the Spinecor was addressed to Mr. My sincerest apologies. My husband used to come on here a lot until I started posting and now just I come on. But I bet he would like to talk to you. He is also a very involved and concerned Dad. In my own defense, I had never heard of the name Gerbo. Perhaps it is more common where you live. Gee, I hope I never said anything here that I normally wouldn't say in front of a man!!! LOL!! Did any of you other women make this mistake? Be honest!
Anyway Gerbo, Nicole has been generally angry about this whole scoli business. She is not the most easy-going child. Her biggest fear is that she will need surgery and have to miss a year of dance. And then she will be behind in dance. That is truly her biggest fear. Which is probably a good thing because obviously my fears about all of this differ greatly. Anyway, hope we all had a good laugh. Just curious, did you have a feeling that we may not have known?

Melissa

Also about the fact I am a spinecor-DAD??

also eleven, going on 16 1/2. She is very happy today as for a whole three days she is not to wear her hard brace at all, in preparation for our spinecorassesment on friday.

general teenage tantrum or something specific about the brace?? (brace is a word not to be used in our house, lisanna hates it)

cyprusmom

12-14-2005, 02:59 PM

Ok spinecor moms and dads, (yes I also thought of you Gerbo as a mom....)
here is our good news from Greece, YES we had good some positive indication that the spinecor is working on Anastasia. Although she is only been wearing it for 45 days the orthotist measured her with the scoliometer to check her thoracic and lumbar curve and both have decreased. Thoracic from 14 down to 10 and lumbar from 4 down to 2. That without the brace.
He said it was a very significant decrease in such short time. It means that the brain is sending the right messages.
He then tightened two of the bands, number 1 and number 4 to, hopefully keep improving...
Oh, and I ordered (and paid) for an extra bolero and got 2 extra bands to change, the 2 that go under her arms,(and get a bit smelly after a while)

As he explained, these curves are the significant ones to worry about at this stage with such large scoliosis. January we are seeing the orthopedic for a clinical exam and probably x-rays.
Also, yesterday we visited the physiotherapist who looked at her exercises how she does them and was also very pleased with the execution. She has a very good body awareness and is able to do the "correction" properly.

Thank you for your thoughts and hope to hear good news from all spinecor moms and dads!

pat

12-14-2005, 06:31 PM

Yeah! Wonderful news! You and Anastasia must be thrilled!
Keep up the good work!! pat

MATJESNIC

12-14-2005, 06:54 PM

Cyprusmom,
You have no idea how happy we are for all of you. I have been thinking about you all day and wondering how the appointment went. Anastasia must be thrilled that all of her hard work with her exercises have paid off. I appreciate that you gave us details. But of course, I am still confused anyway. Did they take x-rays in and out of the brace? Are you saying that her curve in the 30's are now in their teens out of the brace? I'm sorry for being such a pain. Just want to understand. Anyway, have a safe trip back and thanks again for sharing with us. We are all in this together.

Melissa

gerbo

12-15-2005, 04:33 AM

Isn't it loverly to be one of the girls, gives you a whole new perspective on life, the universe and whether my gluteal muscles look big in my trousers.
Similar confusion at another site I contribute to, I clearly must be in touch with my feminine site. Am I bothered? No, think it is kind of funny.

:D :D :D :D :D

Cyprusmum (feel silly using computernames, but do not know your proper name), great to see that things seem to work well. What was the original curve on presentation again? It helps me greatly to see others benefitting, we'll be going for our first assesment tomorrow.........

re out of brace xrays; I think they are hardly significant in the early stages as any improvement out of brace now is unlikely to be structural, with other words, one wwould expect reversion to old situation fairly quickly if brace would be discarded. I would expect it to take a long time for the spine to "grow into the new situation/ position" with significant changes required to ligaments/ muscles/ neurological connections and (Maybe???) bones. The available evidence on liklyhood of long tyerm improvement is based on followup measurements in the brace, not out of brace, so i wouldn't be too bothered about them

Still, the sun must be shining in Cyprus

gerbo

Celia Vogel

12-15-2005, 07:53 AM

Gerbo,

You make me laugh ! :D I have no idea why people are always confusing you for a woman, after all your name is Gerbo LOL !!

Cyprusmom,

That is ABSOLUTELY WONDERFUL NEWS !!!! Dr Coillard also used a plastic thingy on Deirdre's back and I was wondering what it was - I guess it was a scoliometer. They jotted down this information on the computer which had a skeletal image of all her vertebrae, then we went for one in brace P/A x-ray in radiology.

gerbo

12-15-2005, 08:26 AM

I wonder how much these scoliometer measurements come with similar figures as the Xray?

AILEA

12-15-2005, 12:31 PM

It seems like everybody is doing great with their braces!! I must congratulate you all. I Know how stressful is when an appointment is coming up...and when the news are good, you feel you can breathe and keep on dealing with all this,
Best wishes!!

Ailea

MATJESNIC

12-15-2005, 01:39 PM

Hello,
Am I the only one who doesn't understand what the numbers meant. Help me, someone. I am so confused. I thought the curve was in the 30's. I don't understand going down from 14 to 10. Where do those numbers come from? I am talking about the latest news from CyprusMom.
Just wondering, is Gerbo a fairly common name in the U.K? I have never heard of it, being in the States.
Thanks all,
Melissa

cyprusmom

12-15-2005, 02:48 PM

Melissa you are not the only one confused here! Believe me I heard so many different numbers and measurements in the last 2 months since we found out about Anastasias scoliosis that I am not sure I will get you out of your confusion with my explanation. :confused:
Our ordeal started with conflicting measurements of the curve on the x-ray that was taken the very first day we found out (and before I found out about Spinecor) . The radiologist in Cyprus listed it as a 32 degree thoracic scoliosis. We come to Greece for our spinecor appointement and the orthotist looks and meausures the same x-ray as 40(!)degree thoracic and 30 lumbar. (back then ofcourse I was still in a fog and none of these numbers made sense plus you can imagine my shock of the new measurements! :eek: ) Her thoracic rotation was 14 (that I understand, AND see is the horizontal rotation of her thorax therefore the hump she has when she bends down) Lumbar rotation 4 down to 2, again is the horizontal rotation down low.
I asked the orthotist about the 40 degree and how is IT doing and he explained to me that with such large scoliosis and still so early in the course the rotations are the significant ones to check. They showed significant decrease and he was very happy with that. And this guy is straight forward never promised anything or hardly given us much hope before.
I imagine when the orthopedic sees her on the 16th of January he will clinically check more on everything. No we had no x-ray taken now, only bands re-adjusted.
The plastic thingie is the scoliometer, don't know how it complies with x-rays, I believe, but I might be wrong, it only measures the horizontal rotation.

Gerbo, good luck with your appointement, would that be your daughters first? Let us know how it goes.

Melissa, does Nicole have a thoracic rotation? Do you see a hump when she bends down? I remember you mentioned her shoulder blade sticking out. That usually is caused by a rotation of the thorax.
Well, enough said, maybe I got everyone more confused but any comment on that will help me too!
Pola (my real name)

MATJESNIC

12-15-2005, 06:13 PM

Pola,
Thank you so much for taking the time to explain everything. I think I understand now that you were talking about the rotations. I am not too familiar with rotations and their numbers. In fact, I usually only hear people talking about their curves, not about rotations in numbers. Anyway, nobody has ever mentioned a rotation in Nicole's curve. But believe me, I will certainly ask about it in our appointment on the 28th. When Nicole bends down, one side of her back is higher than the other. Is that considered a hump?
The good news is that your Spinecor Doc is encouraged so far. That is wonderful. It will be interesting to see what your other doctor says in January. Anyway, just to change the subject a little, What is Christmas like where you live? Right now we have some ice and hail coming down. This is never fun. But we had some snow a couple of weeks ago so the kids were happy. Nicole sent Anastasia a picture of herself in her e-mail. I hope she got it. Take care and thanks so much for sharing your experience.

Melissa
The plastic thingie is the scoliometer, don't know how it complies with x-rays, I believe, but I might be wrong, it only measures the horizontal rotation.

Gerbo, good luck with your appointement, would that be your daughters first? Let us know how it goes.

Melissa, does Nicole have a thoracic rotation? Do you see a hump when she bends down? I remember you mentioned her shoulder blade sticking out. That usually is caused by a rotation of the thorax.
Well, enough said, maybe I got everyone more confused but any comment on that will help me too!
Pola (my real name)[/QUOTE]

AILEA

12-16-2005, 03:50 AM

My daughter has been wearing her spinecor for more than a year, and she hasn´t had "in-brace" X-rays with this brace, since the first app.(Dec. 2004).
We visit our spinecor ortho every three months, and he always measures her with "the Free point system", wich provides you a 3D view of the postural desorganisation. The ortho has told us, that if there is a reduction in the rotation angles with and without brace, there is no need to make so many X-rays, cause that´s an indicator that the brace is helping with the curves. Perhaps in our visit in Jan she´ll have them done.
My daugther had without brace x-rays done this summer, and we confirmed that there was a little reduction of her principal curve.
Hope this helps

Ailea

MATJESNIC

12-16-2005, 04:48 AM

Ailea,
Thanks for sharing that info. Does everyone have a rotation curve if they have scoli? Does everyone get a number? Nobody mentioned this to me. Unless I forgot. Do you mind telling me how old your daughter is, how big her curve is, and where you are receiving your treatment? Please just tell me to butt out and mind my own business if I am being too forward. Thanks so much. We are glad to have you joining our discussion about Spinecor.
Melissa

cyprusmom

12-16-2005, 11:42 AM

I wanted to ask Ailea the same things actually! I believe your daughter, Ailea,is the one who has been wearing Spinecor the longest amongst this group. So we need to know more from you! :) I know you live in Spain but please remind us your daughters curves and if you have these rotation numbers.
Melissa I would say that if Nicoles' back is higher on one side she also has the hump caused by a rotation which, from my undarstanding is common with a scoliosis say higher than 20. But, who am I? DO ask your ortho. Maybe Nicoles' isn't that much of a rotation.
We are catching the plane to go back to Cyprus in a couple of hours. We have had spring weather and it is not uncommon to have this around Xmas.
The farmers are certainly hoping for some rain....Cyprus is a rather dry island.
I don't think Anastasia got Nicole's photo. We will check again from home.
Talk to you all soon,
Pola

gerbo

12-16-2005, 02:25 PM

about lisanna's spinecor assesment

good bits first. Wow, what a beautiful hospital, this private place in Sheffield, soft carpets, smiling receptionists, loungy type of waitingrooms. Miles of the NHS world of crappy buildings, stressed nurses and general chaos

We were the only patients Mr Mills had to deal with from 10.30 onwards, and with time for x-rays in between, we spend there till 2.30, hardly without any empty time. With other words, we did get lots of time and lots of attention (surely the bill is going to reflect this)

First xray, taken after she had been out of brace for 3 days was a bonus; we measured the cobbs angle at only 26 degree, similar to what it was a year ago, so up till now, we have beenreasonable stable, so that's good too

Next, trial of spinecor, curve at T11 he classified as "being a bit awkward", (whilst T12 would have been easier, apparantly every level has its own approach) Slightly surprisingly (to me) he needed to use his computer to work out how to apply the various components of the brace. Would have hoped that with experience this would have become second nature.

Lisanna kind of liked the brace more than her current plastic one, feels softer, moves easier and is thinner. I think she was slightly disappointed that it was still lots of material to go round her body, and did have her little crying moments (back to reality after 3 days of bracefree bliss played its part)

Next; xray in brace, slightly mixed feelings. We measured the cobb angle at 16 degree (indeed, saw the computer do it, very handy), which as such is better than the 21 degree we had months ago whilst in the hard brace. as such promising, however; one component of the brace is pulling the right shoulder slightly down, which apparantly has a reason as it adds to the straightening of the spine, but i am not to keen to have her walking lobsided through life, and ofcourse it goes against her dancetraining, which is all about symmetry of movement and posture. Not sure how much this pulling down of the shoulder contributed to the straighter picture and given a too optimistic impression of the potential of the brace.

All in all, considering 1))the published evidence is as good as for any other brace (if not better) 2) Lisanna likes the spinecor more than her hard brace 3) It is definitely doing something, we have decided to take the plunge and give it a go. waiting now for NHS appointment with mr douglas in sheffield, who as an orthopedic needs to do the prescribing of the brace.

Best news for Lisanna; at the end we asked whether she should wear her old brace whilst waiting for spinecor at which he replied at the delight of Lisanna that he had rather that we didn't as it could reduce the effectiveness of the spinecor. we had such a happy girl driving back with us in the car tonight, at least xmas and newyear without her brace. How the hell we are going to get her back into bracing in the new year, i don't know, worry about it later.

gerbo

Celia Vogel

12-16-2005, 04:39 PM

Gerbo,

Believe it or not I was thinking about you and Lisanna today! Don't worry about the lopsidedness of the shoulders because that will become less evident in no time at all, at least that was the case with Deirdre ! FANTABULOUS NEWS about the correction !!!!!!!! ;) Hey, I'm beginning to think that the reason we don't hear of more Spinecor cases is because these families don't need the support - their children are doing so well ! :D Oh.... will Mr. Douglas be your new ortho ?

Melissa,

I was wondering what you would consider a success ? Would it be to maintain/correct Nicole's curve OR only correct and maintenance/progression a failure ? I'm just wondering what your expectations are. When is your appointment ? It's soon isn't it ?

Ailea,

That's interesting about having only the intial x-rays !

celia

MATJESNIC

12-16-2005, 06:06 PM

Celia,
I will be thrilled if Nicole's curve didn't get any bigger and she could avoid surgery. Anything more than that would be a bonus. Our appt. is 3 days after Christmas in New York City.
Melissa

MATJESNIC

12-16-2005, 06:17 PM

Gerbo,
Thanks so much for giving such a detailed account of your experience. I really appreciate it. I had kind of the same feeling when our Dr. kept referring back to his book and computer. I was thinking, "Wait, does he know what he is doing?" lol!!! But I know he has done so many of these, so I figured he was being very detail-oriented. We actually received the brace the day of our first appointment. Maybe things are different where you are.
This is so great. We have girls from the U.S., Cyprus, Spain, England, and Canada all wearing the Spinecor. I hope I didn't forget anyone. Of course we would have all liked to have met under more pleasant circumstances. It is interesting that most of our girls are dancers. I guess that is one reason we chose this type of brace. Take care and a Merry Christmas and a Happy New Year to a brace-free Lisanna. (and of course, to everyone else, as well!)
Melissa

AILEA

12-17-2005, 04:30 AM

Melissa and Pola, of course I don´t mind answering
My daughter is 13 years old, and she is being treated in Spain,( where we are from)
I´ve been always told that structural ("real") scoliosis involves vertebral rotation. It is generally measured by a scoliometer, in inches or degees, and by the Nash-Moe technique using the x-rays. With this one the rotation is classified in four stages (0-4) , measurig the pedicle rotation by dividing the vertebral body into segments.
She was diagnosticated with 35ºL and 18ºD curves(Sept 2004), and a mild rotation:
-Scoliometer: 0.39 Dorsal, 0.59 Lumbar.
-Nash-Moe: Between 1 and 2.
-Free point: 6º D, 6ºL.
This summer, she has without x-rays done, and her curves where at 24º, dorsal and lumbar.The rotation degees with the free point, 9ºD and 2º L. I thought the free point system was always used with the spinecor, and I don´t really Know very much about it, but you can see the relationship between all them.
Gerbo, I see your app. went well, congratularions!

Celia Vogel

12-17-2005, 08:17 AM

Wow Ailea !!! You've really educated yourself :eek: Talking about the Nash Moe method and such. Good for you !

MATJESNIC

12-17-2005, 08:30 AM

[Ailea,
Thank you so much for that information. Now I feel as though I can go into my next appt. with a lot of questions. I haven't heard of many of the things you mentioned. I wonder why. Three doctors who specialize in scoli from 3 different hospitals or offices, and all they mentioned were the curves and the risser. I will certainly talk to her Spinecor doctor about this.
Thanks so much. I'm thrilled that your daughter is doing so well.
Feliz Navidad!!! I hope I spelled that at least almost correctly.
Melissa

gerbo

12-18-2005, 04:03 PM

Take care and a Merry Christmas and a Happy New Year to a brace-free Lisanna.

thanks melissa, same to you and everybody

Celia Vogel

12-19-2005, 08:22 AM

Gerbo,

How many x-rays did Lisanna have ?

Melissa,

Don't worry about not getting too much information from the orthos, that's pretty standard. My feeling is that they went to medical school for so many years and don't want to give up any information - after all they are charging the big bucks for their expertise.

gerbo

12-19-2005, 08:44 AM

only 2, one standing out of brace and one standing in brace. Made sense to me as I wouldn't have thought that lateral xrays would have really changed the management, although I actually didn't ask that question, might do when i next see him

(stupid radiologist put pelvic protection (after i mentioned it) in front of Lisanna, rather then behind her, and before I could really comment the xray had been taken, clearly without protection, do you really have to think of everything yourself??)

Anybody follows this prescribed exercise programme.??? Not really sure what the "status" of it is, i.e. whether there is evidence that brace with specific exercise is better than brace alone.

He wasn't sure about "my" torsorotation, need to send him the literature so he can put it to their exercise specialists within the firm. Not to keen to let go of it as I have some confidence that it has helped to keep things stable over the last year

pat

12-19-2005, 01:57 PM

"do you really" have to think of everything yourself??)"
That, by far, somedays is the most tiring and frustrating and sad to say common occurrence!! Drives me nuts! p

MATJESNIC

12-19-2005, 06:18 PM

Hi all,
Remember when I was asking about rotation? Pola, I think you were the one who said that Nicole must have some rotation because her left shoulder blade sticks out. Also when she bends down, one side is higher than the other. Well, when I took her to the chiro for her electric stim and stretching, I asked him about it. You were right. He doesn't have any number for me, though. I wonder why Nicole's rotation was never mentioned. Neither orthopedic at either hospital said anything. I am interested because Pola, you were saying that they determined that her brace was working based on the rotation going down. I will definitely ask these questions on Wed when we see our Spinecor Doc. This is random, but I am still waiting for those darn bodysuits. It says in the brochure that it takes 4-5 weeks. But it seems like forever.
Melissa

gerbo

12-20-2005, 01:57 AM

It might not be mentioned because it is such an intrinsic part of the scoliotic curve that it nearly"goes without saying" that there is a rotation; the forward bending screening test is ofcourse based on this

cyprusmom

12-20-2005, 03:38 AM

Hello everyone,
back home after our appointement, ready for the holidays.
Gerbo I didn't realize your daughter was having her first assesment to get the spinecor. It all sounds like it went very well. You achieved a very good correction in the brace. Was she in a Boston before?

My daughter is following quite stricly the correction exercises prescribed by the orthotist for her Type of scoliosis. Both he and the physiotherapist commented that they are very important, but like it was discussed another time on this forum, some doctors prescribe them and others don't. They are official spinecor exercises though and I see exactly how they work on my daughters curves. The same forces that the bands are using while in the brace, the exercises do them in a greater degree and ofcourse repetitions.

Melissa, your appointment is coming up, you will have lots of questions it sounds like....
Enjoy the holidays everyone

AILEA

12-20-2005, 10:32 AM

Melissa, reading your last post, it seems like you are getting anxious because of "all those numbers" that you don´t have.
I´ve got lots of measurements, because We´ve seen several (lots) of different specialist, but not all of them have told us about the rotation,. Well, in fact, our regular ortho., has been specially kind, and has explained us quite a lot about "our" scoliosis, but you know, doctors usually don´t have enought time, and they´re not allways kind...Good luck with your app.
Gerbo you mentioned , that the radilogist put the pelvic protection in front of your daughter, not behind her. Could you believe what I saw, when I looked at our last x-rays? There was no pelvic protection. If you ask me, I´ll answer: Yes, you really have to think of everything yourself.
Take care

Ailea

Celia Vogel

12-20-2005, 01:26 PM

Melissa,

I'm really surprised the chiro couldn't give you Nicole's rotation ! Does he have a copy of her x-ray ? Because if he does, it's just a matter of looking at the distance of the pedicles to the outer edges of the vertebrae. Normally there would be the greatest amount of rotation at the apex of the curve and that's the vertebra you would look at. According to the Nash Moe method, no rotation would be 0 and the greatest amount of rotation would be 4 - Ailea explained it very well ! In general, rotation follows the severity of the curve - the greater the curve, the greater the rotation. I don't know if it's possible to have high rotation with a low curve :confused: I also don't know whether it's possible to significantly reduce rotation in an adolescent child without surgery. It's easier to reduce rotation through bracing during the infantile/juvenile years but once a child reaches the adolescent stage and the vertebrae become rigid, it might be more difficult. There are so many things to consider, i.e., whether it's a long standing deformity or whether it just occurred within the last few months, whether wedging exists etc. If you start to think of all the variables, it'll just boggle your mind. The only thing I can say is KEEP THE FAITH !!!

Let us know what Dr. Deutchman has to say....

Gerbo,

Did Lisanna have an A/P x-ray ?

MATJESNIC

12-20-2005, 02:12 PM

Celia,
Thanks for the info. No, the chiro didn't have a copy of the x-ray there. We showed him copies before, but we have the copies at home. We will certainly ask Dr. Deutchman.
Melissa

gerbo

12-21-2005, 02:10 AM

Did Lisanna have an A/P x-ray ?

PA (that's why it didn't make sense to have protection at her front, the more i think about it the more stupid it seams, we really should have said something, but she was so friendly and we didn';t want to get her into trouble........, aren't we nice people......)

MATJESNIC

12-28-2005, 03:09 PM

Hi Spinecor Friends,
I hope everybody had a nice Christmas and/or Hanukkah. We had Nicole's appt in N.Y today and it went very well. She grew an inch and a quarter. She had 2 x-rays taken. Out of her brace, she measured at 32 degrees (down from 37). In the brace, she measured at 27 degrees (up from 23 degrees). Dr. Deutchman believes that if he had tightened the brace some more, we would have had a better in-brace measurement. But he didn't want to do that because we have another compensating curve that we are concerned with. He also measured her rotation and it went down from a 14 to an 8. He was very pleased with the results. He is more concerned with out-of-brace x-rays than in-brace.
He added a new excercise for Nicole to help the compensating curve.
We were there for 2 hours and I had all of my questions answered.
Although we are extremely pleased with how things are going, we know that Nicole is not out of the woods yet. At any given time, her curve could increase. but now we have some extra room to "play with" so to speak. Nicole is very happy that her brace and her exercises seem to be working. She is going to have a much better attitude. Her brace's name will be Roxy again instead of CRAP!!!! Thank you all for your prayers and good thoughts. We know there is another family in the area who has a son and goes to Dr. Deutchman and he is doing well, too. I am full of hope as we start the new year. Happy and Healthy New Year to all of you. Any questions, feel free to ask.
Melissa

cyprusmom

12-29-2005, 10:45 AM

Hey Melissa, what great news!!!! I was thinking about you yesterday and your appointment. It is wonderful to hear positive results from us spinecor moms and dads.... It gives us all more hope. What do you mean by the other compensating curve she has though?(It is my turn for questions!) Glad you found out Nicoles' rotation going down too, and one last thing, please remind me was that your second appointment since Nicole was fitted with the brace? If so, did she have x-rays before?
Enjoy your Nicole with her better attitude.... :)
Pola

MATJESNIC

12-29-2005, 02:33 PM

Hi Pola,
It seems as though Nicole has two other small curves. The Dr. explained it to me. Often, when there is a major curve, other parts of the spine are affected by it. I think it's the way Nicole is compensating for the curve she has that causes the other curves. I am not sure I understand it exactly or that I am explaining it correctly. She is considered to have one major curve. The last out-of-brace x-ray was almost 4 monts ago when she got her brace. She was at 37 then. When we were there almost 3 months ago, she had an in-brace one taken and she was at I think 25. I never realized that he had told me about the rotation at our first meeting. It had been written down. But we received so much info then that I didn't even realize. Anyway, I hope I answered all of your questions.
When will Anastasia turn 12? Nicole's birthday is March 21. She is 5'2. If she takes after me and my older daughter, she only has 2 or 3 inches left to grow. But it is also possible that she will be taller. My husband is 6'.
Melissa

Hey Melissa, what great news!!!! I was thinking about you yesterday and your appointment. It is wonderful to hear positive results from us spinecor moms and dads.... It gives us all more hope. What do you mean by the other compensating curve she has though?(It is my turn for questions!) Glad you found out Nicoles' rotation going down too, and one last thing, please remind me was that your second appointment since Nicole was fitted with the brace? If so, did she have x-rays before?
Enjoy your Nicole with her better attitude.... :)
Pola

Celia Vogel

12-30-2005, 07:47 AM

Melissa,

Great news !!! That must be such a relief to know that things are improving, I know this was an important appointment for you and Nicole. Can someone enlighten me on the measurements :confused: Are they actually measuring rotation with the scoliometer or are they measuring the gibbosity/rib hump ? Oh, I got three pink body suits from that place and they look great !!!! Next time I order, I might contact the other place Pat recommended since they're a little cheaper.

Pola,

I think you mentioned on one of the posts that you purchased some extra pieces, were they very expensive ?

HAPPY NEW YEAR everyone :)

celia

pat

12-30-2005, 09:31 AM

Wonderful news Melissa! So glad to hear. It's amazing how far we've come in this house, we all forget she's even wearing it! When is your next appointment?

Celia, we got our bodysuits from bodysuit.com, and they've worked out beautifully, and we also got them from special clothes, and I'll order more from bodysuit. Special clothes just didn't fit as well.

p

MATJESNIC

12-30-2005, 10:24 AM

Can you all believe that I am still waiting for my bodysuits from Special-Clothes. They sent them to me and I sent them back for some special alterations. Last I talked to them they said I should be getting them any day now. That was last week. I am so sick of washing the same 7 over and over again.
He measured Nicole's rotation by having her bend over and used some instrument to measure the rib hump. Everything else was measured with x-rays. Not a lot of room for error with x-rays because it is the same Dr. having her stand in the same spot in the same way, etc. Our next appt. will probably be in the beginning of April. For now, he wants to see us every 3 months. We are getting pros at hopping the train and hailing a cab in N.Y. lol!
Thanks for all of your support. We wish everyone a Happy New Year.

Melissa

AILEA

12-30-2005, 11:43 AM

Great news, Melissa!! I´m happy for you!.
It seems that all the app. in the last months have been satisfactory! I wish everyone a happy and "full of good news" year!!

Ailea

cyprusmom

01-01-2006, 04:53 AM

When will Anastasia turn 12? Nicole's birthday is March 21. She is 5'2. If she takes after me and my older daughter, she only has 2 or 3 inches left to grow. But it is also possible that she will be taller. My husband is 6'.
Melissa

HAPPY NEW YEAR EVERYONE! ΕΥΤΥΧΙΣΜΕΝΟ ΝΕΟ ΕΤΟΣ! (Α little greek 4 u)

Melissa, thanks for answering my questions. Yes I was told a similar thing about Anastasias curves. They are sort of balancing the spine.....by going one way and the other the opposite way....and too much information that gets me confused at times. I run my fingers up and down her spine and can visualize exactly what happened and wish I could just push it back all into place. But I do massage her and send her some positive energy....

Anastasia will turn 12 on June 13th and she is now 1,58 (sorry, metric system here!) If I stand correct that is about 5'3. My husband is 6'3 and I am around 5'6. We'll see where she stops. :rolleyes: I heard some whispers about kids with scoliosis losing some inches of height.....anyone knows more about it?
Pola

cyprusmom

01-01-2006, 05:11 AM

Melissa,

Can someone enlighten me on the measurements :confused: Are they actually measuring rotation with the scoliometer or are they measuring the gibbosity/rib hump ?
Pola,

I think you mentioned on one of the posts that you purchased some extra pieces, were they very expensive ?

HAPPY NEW YEAR everyone :)

celia

Celia, I believe the scoliometer reads the rotation of the ribcage, therefore the hump on one side, but I could use more info on that if anyone knows more about it. In my daughters case, since she was fitted the spinecor her thoracic rotation went down from 14 to 10 and the lumbar rotation from 4 to 2.

About the extra pieces, I had the orthotist order an extra bolero for her and paid 75 euros (more or less the same US$ ?) I had already been given free extra crotch straps and the two bands that go under her armpits. (After I streched how smelly they get in a week of no washing.......think about it I told him, its' like sleeping, exercising, going out, going to school, running, etc all in the same bra! :eek: )

When is your daughters next appointment?,
Pola

pat

01-01-2006, 07:37 AM

MATJESNIC

01-01-2006, 09:35 AM

Hi Everyone,
Happy New Year!
Pola, it sounds as though our girls' curves are similar. I know that Nicole's main curve is in the thorasic-lumbar region. But my Doc said the same thing about curving both ways. Most importantly is that it is not curving toward any organ. A lot of the girls on SpineKids have had fusion and not all have gained inches. Some of the Parents and Kids have had discussions over there about that.
Take care!
Melissa

cyprusmom

01-01-2006, 03:02 PM

Pola, they do indeed lose some height w/their curved spines; my daughter after fusion surgery gained 1-1/2 inches after surgery! Had to take her out clothes shopping for her "new and improved" torso! p

That makes sense after a successful fusion the spine streches out, but you got me confused now Pat, your daughter is wearing a Spinecor after surgery?
Pola

MATJESNIC

01-01-2006, 04:55 PM

Pola,
I believe that Pat is talking about her older daughter who had a different brace and then went on to have surgery. I am sorry for answering for you, Pat. My husband and children hate when I do that to them!!!lol!! Hopefully I have answered correctly. I have a pretty good memory. But it gets hard to keep all of you straight in my head. So correct me if I am wrong!! Pola, did Anastasia get the picture of Nicole? If not, then I have no idea what we are doing wrong. Dr. Deutchman gave us some new crotch straps (a gift). He said that probably in 3 months we will have to replace some bands.
Melissa

Celia Vogel

01-03-2006, 10:22 AM

Hey Gang,

I just finished viewing Dr. Rivard's presentation at the 40th annual SRS meeting and one very interesting thing that he said was that a lateral x-ray is mandatory for the spinecor fitting....I was thinking back to Gerbo's post in which he stated that a lateral wasn't taken for Lisanna. Anyhoo... if anyone is interested, here is the presentation:

http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12

MATJESNIC

01-03-2006, 02:49 PM

Celia,
thanks so much. I just kind of skimmed it, but will go back to it when I have more time. So exciting and encouraging. Not sure if Nicole ever got any lateral x-rays.
don't think so.
Melissa

Hey Gang,

I just finished viewing Dr. Rivard's presentation at the 40th annual SRS meeting and one very interesting thing that he said was that a lateral x-ray is mandatory for the spinecor fitting....I was thinking back to Gerbo's post in which he stated that a lateral wasn't taken for Lisanna. Anyhoo... if anyone is interested, here is the presentation:

http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12

Celia Vogel

01-04-2006, 08:08 AM

Melissa,

Geez....I forgot to mention that the results are AMAZING !!!!! :)

MATJESNIC

01-04-2006, 10:09 AM

Celia,
Did you read the one about Peak Height Velocity? I didn't understand what they were concluding? It was going so fast and I don't know how to stay on one frame for a period of time. Husband and kids are not here to help me, lol!! If you read it and understood it, could you please tell me your take on it. Thanks. I don't think any of the doctors did lateral x-rays. What does that entail? Dr. Deutchman is in close contact with the inventors in Canada, so why wouldn't he have done it? How is Deirdre doing?
Melissa

CMelissa,

Geez....I forgot to mention that the results are AMAZING !!!!! :)

pat

01-04-2006, 10:42 AM

Yes Melissa's right Pola, I was talking about my oldest daughter (she's post-op and does not wear a brace now!) Sorry for the confusion!

Celia, I'm thrilled you posted Dr. Rivard's presentation, it is pretty impressive. I'll have to check it out, I've got the 42 page written copy, but the rest of the conference looked mighty interesting. Anyone's doctor speak at this conference? p

MATJESNIC

01-04-2006, 12:19 PM

Pat,
Where did you get the written copy? Dr. Betz is a real big doctor at Shriner's in Phila. I saw his name there, but I have never met him. Pat, how is your younger daughter doing with her Spinecor? I just spoke with the people at Special-Clothes and they said they shipped my bodysuits Priority Mail yesterday. Finally!!
Melissa

gerbo

01-04-2006, 01:37 PM

celia or pat, what about a short summary of conclusions/results/keypoints?? Unfortunately do not seem to be able to open presentation.

Happy new year to all

gerbo

Celia Vogel

01-04-2006, 02:20 PM

Melissa,

I just finished viewing the Peak Height Velocity (PHV) segment and I must say, it was incredibly interesting ! Here are my notes on the first study:

1) All children in the study were braced

2) PHV is defined as growth of more than 9 cm/year

3) Cessation of growth is defined as growth of less than 2cm/year.

4) PHV occurs pre-menarche and during risser 0

5) Menarche on average occurs 4.5 months after PHV

6) Risser 1 occurs 11 months on average after PHV

7) 30 degrees seems to be a threshold at PHV. If curve is greater than 30 degrees at PHV then one can assume that the child will progress to surgery. No curves that were less than 30 degrees at menarche progressed to surgery levels.

The second study on PHV dealt with identifying markers for PHV and there were a lot of different things to look at. What I got out of this discussion was if a child is going through breast development, one can safely assume that the child is in the middle of PHV.

celia

Celia Vogel

01-04-2006, 02:24 PM

Gerbo,

I haven't heard from you in ages ! What do you mean you can't open the file :rolleyes:

Pat,

Where did you get the study from ? Did Dr. Rivard mail it to you ? I wonder if it's available on the internet anywhere :confused:

MATJESNIC

01-04-2006, 03:08 PM

Celia,
My brain hurts!!!Bottom line, is Spinecor going to work for Nicole? That is the million dollar question. Are they saying they will definitely need surgery even with brace? What does Spinecor say about this? I wonder. I sent you a private message because of some of the personal things I wrote.
Melissa

gerbo

01-05-2006, 04:16 AM

Celia, been around but not much to say at the moment, as i feel rather in limbo, with lisanna being completely unbraced whilst we are waiting for a fitting appointment. Trying not to think to much about scoliosis as at times it gets me too worked up.

Melissa, woulldn't get too worked up about this > then 30 degree issue, I think it is well known that a curve over 30 degree has a higher chance of getting worse and that rapid growth is the biggest risk factor, hence the importance of trying to keep curve below 30 degree until past PHV.

If the spinecor will do that for you (as it is doing now) you are going to be OK hopefully. Clearly the bracing they are talking about in the PHV study we do not know anything about, i.e. type used, correction achieved, compliance etc.

all of us know that whatever we try, there is never a garantee that our child will not end up having surgery, but at least we know that, on current evidence, we are doing as much as we can to prevent this happening. (and remember, even surgery isn't the worse, as there are many "happy" surgery stories)

best wishes

gerbo

MATJESNIC

01-05-2006, 06:42 AM

Gerbo,
You are right on all counts. Thanks.

Melissa

Celia Vogel

01-05-2006, 07:33 AM

I totally agree with Gerbo ! We've been through the infantile growth spurt with Deirdre and we've come out O.K. If I "believed" all the negative studies out there about progressive infantile scoliosis, I might as well just roll over and die ;)

The study on PHV is quite depressing, however I would like to read the 'entire' study before throwing in the towel ! Another study I would like to read is the Spinecor study because it offers much hope (children with curves over 30 degrees were treated) and fared quite well ! Given a choice I would rather read stories of hope and triumph vs stories of doom and gloom. :) This is why I'm an eternal optimist....

MATJESNIC

01-07-2006, 09:32 AM

Hi Everybody!
We got our bodysuits!!! They look really nice. Nicole didn't try them on yet. but I told her whatever it is, it is. I am not sending them back again. Now we have 8 from Spinecor and 4 from Special-Clothes. That should be plenty. Celia, that is great that you are an optimist. I am always trying to be optimistic, too. Have a nice day everyone.
Melissa

Celia Vogel

01-08-2006, 07:41 AM

Gerbo,

Does Lisanna have her brace yet ? Is she not wearing any support right now ?

gerbo

01-08-2006, 01:17 PM

no, no support at all currently, just telling her to keep on "side-shifting", a corrective movement, proposed by, of all people, ms mehta, and continuing with torsorotation at gym. I am not too worried as i am convinced that in a month or so a scoliosis will not get structurally significantly worse, i.e. no irreversible changes are likely to take place in such a short time, which could not be corrected by good bracing after (this is what you call "rationalising", well knowm psychological defence mechanism)

We just received on saturday a letter stating that we now can phone to make a NHS appointment, as we reached "top of the waiting list", i'll do that tomorrow as I can not keep on rationalising for much longer and want her back supported again asap

I am very remotely wondering whether lisanna would get any benefir out of coming to see dr rivard and colleagues on top of the input we are getting by mr Mills. What really bothers me is that he had to use a computer to work out what components to use. Did dr rivard need to do that??

gerbo

Celia Vogel

01-08-2006, 03:13 PM

Dr Rivard and Dr. Coillard were not referring to any manuals if that's what you mean :D They are the inventors of the brace, BUT we did have to have lateral and prone position x-ray in addition to the P/A, so I imagine the computer program had some kind of input in determining the proper fit for the brace. Are you considering seeing Dr. Rivard ? If so, Dr. Rivard and Dr. Coillard are the nicest, most down to earth doctors you'll ever meet ! What is side shifting ? Did you have a consultation with Miss Mehta ? Sorry for all the "?"

gerbo

01-09-2006, 01:26 AM

One of the earliest articles I found re the use of exercises was the use of "sideshifting", as an additional treatment for scoliosis (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10552325&dopt=Citation) This small study suggests that it might help (a bit??) Somewhere I picked up that it was originally advocated by Ms Mehta, when she worked at Stanmore in London. We have never seen or consulted her, although she must be a fascinating person to meet i would think.

We had little formal instruction, but the basic technique is to move the upper part of your body laterally to the concave side of the curve (so not bending it), thereby till some extend actively correcting it. It is basically a way of holding yourself straight and when performed properly the posture looks much better. Big problem is really to keep on doing it all the time, or having to remind somebody to do it all the time, so even if it works, the chance that you get a teenager to do this consistently isn't too big.

I do believe that the corrective movement isn't much different from the corrective movement achieved by the spinecor.

gerbo

cyprusmom

01-09-2006, 03:58 AM

Yes, indeed this "side shifting" is one of the corrections one of the spinecor straps does to my daughters spine and when out of the brace one of the prescribed movements part of the corrective exercises. But it all depends on the individual case as different corrective exercises are needed for each person. And ofcourse it is all connected to the rest of the body so you have the pelvis, the shoulders, the thorax to correct as well......
But how much longer will Lisanna be unbraced?
Hope all goes well,
Pola

gerbo

01-09-2006, 04:36 AM

But how much longer will Lisanna be unbraced?
Hope all goes well,
Pola

just been told will be getting an appointment next week friday, which is excellent for nhs standards

looking forward to it, but also dreading it, as she will be so reluctant to be braced again after tasting freedom for a month.

does it ever snow on cyprus?? (no relevance to this question at all, was just wondering about it yesterday)

gerbo

Celia Vogel

01-09-2006, 08:07 AM

Very interesting info on side shifting ! I know I would be a nervous wreck if Deirdre had no support at all, it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present. Could she not wear the boston brace during sleep, I don't see how that would influence muscle atrophy and that's when growth normally occurs.

On the topic of weather, we're having a very mild winter here in Ontario ! On Thursday we're expecting to get a high of 7 degrees celsius and currently all the snow has practically disappeared.

gerbo

01-09-2006, 08:24 AM

I know I would be a nervous wreck if Deirdre had no support at all, it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present. Could she not wear the boston brace during sleep, I don't see how that would influence muscle atrophy and that's when growth normally occurs.

Trying to make me nervous now? :D Her current TSLO (not boston) brace is a very poor fit now and is very unlikely to do any good. For the sake of another 10 days, I am not going to worry (note mixture of rationalisation and denial)

On the topic of weather, we're having a very mild winter here in Ontario ! On Thursday we're expecting to get a high of 7 degrees celsius and currently all the snow has practically disappeared.

so huskie-sledge rides have been cancelled then??

gerbo

01-09-2006, 08:26 AM

it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present.

I actually am getting some comfort out of the fact that despite a vulnarable age with considerable growth, and a poorly correcting brace, we have seen little if any deterioration over the last year, is our torsorotation working???

Celia Vogel

01-09-2006, 09:45 AM

so huskie-sledge rides have been cancelled then??

Unfortunately, due to the extreme mild weather we suffered a major set back when our igloo collapsed on the alpha dog :D Oh well, better luck next year....

gerbo

01-09-2006, 10:16 AM

:D :D :D :D :D :D :D

gerbo

01-09-2006, 10:42 AM

you must worry sometimes that your whole way of life could be under threat because of this global warming. ;)

MATJESNIC

01-09-2006, 11:11 AM

Hi Gerbo,
What exactly is torsorotation?
Melissa

gerbo

01-09-2006, 11:20 AM

Melissa, just read through this; http://www.medxonline.com/core/downloads/research/measuredresistanceinscoliosis.pdf and you know all i know. We are trying to do this with Lisanna

Must be careful not to be seen to "promote" this as it was only a very small study and hasn't been replicated elsewhere yet, however, various overviews of scoliosis have quoted it as "interesting" or "promising"

There is a certain logic in it, I think and is unlikely to do any harm so we thought it was worth trying

gerbo

Celia Vogel

01-09-2006, 01:03 PM

you must worry sometimes that your whole way of life could be under threat because of this global warming. ;)

Plans are under way by local village leaders to perform a ceremonial dance to pay tribute/appease the weather gods :D

pat

01-09-2006, 05:53 PM

Hello! Catching up w/your posts! We got our report directly from Dr. Rivard. We were prescribed exercises that sound very much like side shifting by a Dr. Negrini, a doctor from Italy, but as Gerbo said, it was very hard to get our teen to do it w/out us micromanaging the whole thing. So needless to say, it just didn't happen as regular as we would have liked.

I think overall, everyone's doing pretty well, yes?!!!
p

MATJESNIC

01-09-2006, 06:46 PM

Nicole's exercises consist of moving to the side to her "corrective position." She does this sitting on the ball and standing up. She now has a new one that consists of lying on her side with one shoulder higher to address the compensating curve that is near her neck. She also has wobble board balancing and some eye exercises. She hates doing the exercises. We have to remind her to do them every night. We also have to oversee them. There are some nights that we don't make her do them. For example, if she has a 3-hour dance night, there is no time to do them. Because she needs to take her 2-hour break without her brace. These exercises need to be done with the brace on. Also, when Nicole takes ballet (3 hours a week) she gets into her corrective position in class when they do the side stretches. I am sorry if I am rambling.
Melissa

Hello! Catching up w/your posts! We got our report directly from Dr. Rivard. We were prescribed exercises that sound very much like side shifting by a Dr. Negrini, a doctor from Italy, but as Gerbo said, it was very hard to get our teen to do it w/out us micromanaging the whole thing. So needless to say, it just didn't happen as regular as we would have liked.

I think overall, everyone's doing pretty well, yes?!!!
p

MATJESNIC

01-09-2006, 06:56 PM

Thanks, Gerbo
Very interesting. I think I will make a copy for Nicole's Chiro to read.
Melissa

cyprusmom

01-10-2006, 01:39 AM

We actually had an very mild winter so far here in Cyprus(which is nothing new) but we do get some snow on the peak of the highest mountain for about 2 months.None yet, but it will come. Some people ski....NOT me, I stick to the low part of the island. I will take the 40-45 celcius of summer anytime instead of snow..... :cool: Anyone for a visit???
Pola

does it ever snow on cyprus?? (no relevance to this question at all, was just wondering about it yesterday)

gerbo[/QUOTE]

cyprusmom

01-10-2006, 01:56 AM

Pat and Melissa after reading your posts about the exercises well, my daughter is acting the same way most of the times....I just have to oversee them if she is tired or had dance or this and that. I had hoped she would do them without me reminding her but the truth is they are not exactly "fun". She'd rather do yoga (which I m glad she got into ) or dance.
I try explaining to her how important they are but I feel this might get a negative reaction. I figured if she does them 3-4 times a week it is ok....

Melissa, I think it is great that Nicole does her correction while streching at dance, I will try to get that into Anastasias mind!
Pola

gerbo

01-10-2006, 02:48 AM

Plans are under way by local village leaders to perform a ceremonial dance to pay tribute/appease the weather gods :D

:D :D , nice to start the day with a smile.

AILEA

01-11-2006, 03:18 AM

Hello all!!
I thought I was the only mum fighting with my daughter because of the exercises! . I try to oversee them but my daughter gets quite angry and doesn´t let me, because she says I´m allways checking her back, her posture, the brace, the exercises...and in fact she is right, I can´t stop doing it!!
I try to understand her; she is a teeneager and her "very-anxious-mun" is breathing down her neck all day..., I think, your daughters are younger and maybe, is easier to oversee them, without arwing :confused:
We have our next app with the spinecor-doc in a month, and I suppose that he will take her in-brace x-rays, witch she hasn´t had done since our first app, 13 months ago. I don´t know if I´m going to be able to wait without lose my mind. I need to know that the brace is doing what is suppossed to .

Take care, and have a good start of this new year

Ailea

MATJESNIC

01-11-2006, 05:41 AM

Ailea,
I think we are all going through the same thing when it comes to our kids and their exercises. My daughter is almost 12. My older daughter, who is 15, would be so much worse if she had scoli. Teens are already dealing with enough. I can't wait until Nicole can stop doing the eye exercises. That will make the entire routine shorter.
Good luck on your appt. I can't wait to hear some good news.
Nicole

cherylplinder

01-11-2006, 06:34 AM

My daughter, Rachel, was diagnosed with scoliosis 2 years ago. She is 10. My older daughter, Sarah, has scoliosis, but had nearly stopped growing by the time we knew. Sarah's did not progress beyond 13 to 14 degrees, and so I didn't freak about Rachel. She held steady (right thoracolumbar curve, both 18 to 19 degrees) until July, at which time her thoracic curve had progressed to 24 degrees. I had done no research on my own, and had no idea what a huge change that was. Our orthopedist decided to watch a while longer and in December, her curve was 33, at which time he prescribed the Boston brace. I have been researching the spinecor brace and saw your thread. I am considering going to MOntreal to see Dr. Rivard. I spoke with him yesterday on the phone. Does anyone know how often adjustments would be made and where we would go for them? I live in the deep south (Mississippi). I know the cost of the brace, but how much was the initial assessment in Montreal? How much are follow-up visits to Montreal? I don't think our insurance will cover any of it. It is so hard to know what is the best thing for her , also. I am so afraid of making the wrong decisions. I feel so out there. No one here seems really familiar with the brace, and they regard this as a radical decision. I have enjoyed your posts and found much to emphathize with.

Celia Vogel

01-11-2006, 08:54 AM

Cheryl,

Welcome to this wonky, all over the place discussion ! Pat would be able to answer your questions as far as costs go because she travels into Montreal from the States. I don't know about anyone else, but after the initial fitting we had to return for a followup in 5 weeks time and future appointments will be every five months.

AILEA

01-11-2006, 10:05 AM

Cheryl. My daughter in not being treated in Montreal, but if it heps you, we have the assessment (1.500,00 $) our first follow-up one month later, and since then, visits every three months ( 250,00 $). I think that there are not big differences, (at least in Europe).
Good Luck with your decision!

Ailea

MATJESNIC

01-11-2006, 02:54 PM

Hi Cheryl,
Welcome! I know how you feel. My 11-year old daughter was diagnosed with a 37 degree curve and given a prescription for a Boston Brace. We went against what the doctor prescribed and put her in a Spinecor Brace. Going against a top orthopedic surgeon and making a decision like that was extremely difficult. There was a lot of confusion, crying, and sadness during those first weeks. But once we made the decision and got the brace, we just accepted this as the path we chose. We couldn't put her in that Boston Brace. We just couldn't do it. We feel that she has just as much chance (based on all that we have read) to be successful in Spinecor as she would have in the hard brace. If she needs surgery in the future, she probably would have needed it in the future after hard bracing.
About the cost.....We go to New York City for our Spinecor. The brace cost $3,500. Our lovely insurance company has given us $200 for it. We are planning our appeal. Anyway, we did get a 2nd opinion at a Shriner's Hospital and the ortho. told us that no matter what happens with Nicole's spine, he doesn't want us to ever blame ourselves. Because we are doing what we feel is the best for her. His words have stuck with me. We, as Parents, are all doing the best we know how. Good luck and God bless.
Melissa

pat

01-11-2006, 05:17 PM

Hi Cheryl, welcome aboard the spinecor train! We do indeed travel to Montreal to see Dr. Rivard/Dr. Colliard, our costs are $3,000.00 for brace, and $300 to the Radiology department for x-rays each time, and $80 for physicians' fees. I have an older daughter who had spinal fusion surgery a year ago, after faithfully wearing her brace (only at night), my husband and I just couldn't bring ourselves to put our daughter in a full-time hard brace. Surgery for my first daughter was very successful and I'm so happy we did it, my daughter now in the spinecor brace, has other health issues; the spinecor brace is the perfect brace for her. I've talked with various ortho surgeons, and my feeling is a brace will either work or it won't, ANY brace, due to a genetic marker with these kids (they're doing some research on that now). I agree w/Melissa once you've decided, that's it! If you look on the Spinecorporation website, you'll see there's other doctors/chiros in U.S offering the spinecor. I was encouraged to read that the demand for Spinecor braces is increasing, and also that Shriners' in (sorry, forgot which State) is now offering Spinecor also. p

Celia Vogel

01-12-2006, 07:09 AM

Melissa,

Prior to getting the Spinecor brace, I phoned our insurance company to find out if they covered it and they said "NO, we don't cover elastic braces". At the time I didn't care whether or not they covered it because I believed in the product and I knew I didn't want my daughter in a rigid brace 23/7. So I went ahead and got the brace, filed a claim with the insurance company and they approved it !!! It was like winning a lottery because I really didn't expect to ever see that money again :D

Pat,

The Shriners hospital that prescribes the Spinecor brace is in Erie, Pennsylvania. As far as I know, any brace prescribed through a Shriners hospital is free of charge to families.

cyprusmom

01-12-2006, 11:07 AM

[It is so hard to know what is the best thing for her , also. I am so afraid of making the wrong decisions. I feel so out there. No one here seems really familiar with the brace, and they regard this as a radical decision. I have enjoyed your posts and found much to emphathize with.[/QUOTE]

Hi Cheryl,
welcome from me too! I know exactly how you feel...The decision to put my daughter in the spinecor was also against what she was prescribed by the orthos here (a Boston) I flew with her out of this island (Cyprus, in the meditterenean) to get the spinecor in Greece after researching it myself online. So speaking of feeling alone and noone being familiar with the brace....I hear you! I spent many sleepless nights wondering what the right decision would be! Got as many opinions I could and also listened to my instincts...I now feel good about the decision though and although my daughters curve is quite advanced T40, L30 I know it was the best for her. I just could not put her in a hard brace. The spinecor was very easy to adopt to, she even forgets she has it on and continues with all activities.
Costwise it sounds like it is the same more or less around the world(?) in our case we paid 2,500 euros and covers all follow-up visits with orthotist. X-rays and ortopedics exams are on top.
Good luck with your decision, keep us posted.
Pola

gerbo

01-12-2006, 11:57 AM

Also, you could be in a position where you would have chosen to go along with the boston and have very similar doubts about wether it would have been the best choice. There aren't that many good studies confirming its longterm effectiveness, and none of the studies i have seen seem as comprehensive as the spinecorstudies. Also, lots seems dependend on the shill of the orthotist applying it, correction achieved in the brace, and willingness of the patient to wear it 20-23 hours a day. Lots and lots of patients in Boston, at least the ones who post on forums, seem to progress regardless and end up with surgery. Now i come to think of it, i cannot remember coming across any post of anybody indicating longterm benefits.

Sometimes it seems that boston is so established and accepted, that any evidence of it not working so well gets accepted as just one of those things, whilst other systems would not get away with similar failings

and as i have said before, if everything else fails, there are many succesful and happy surgery stories, so if that is the worse what can happen to our daughters, they'll be alright

gerbo

MATJESNIC

01-12-2006, 12:59 PM

Celia,
I called our insurance company and gave them the code for the Spinecor and asked if they covered it. I was just making sure the brace was something legitimate because I had only heard of it from the Internet. They looked up the code and found it and said they covered it. They didn't give me specifics and I didn't ask as that point. I totally agree with you. I would have gotten it anyway. But our Drs. office thinks they are confusing this with a simple kind of brace because they both have the same code. But after they wrote a letter, we are still being denied anything beyond $200. I am so angry I feel like wringing somebody's neck over there. Our Dr. works with Blue Cross Blue Shield all the time and has never had this problem. Ours is a PPO. Blue Cross Blue Shield of Texas. We live in Pa, but only offered this PPO. We are definitely going to appeal.
Melissa

Melissa,

Prior to getting the Spinecor brace, I phoned our insurance company to find out if they covered it and they said "NO, we don't cover elastic braces". At the time I didn't care whether or not they covered it because I believed in the product and I knew I didn't want my daughter in a rigid brace 23/7. So I went ahead and got the brace, filed a claim with the insurance company and they approved it !!! It was like winning a lottery because I really didn't expect to ever see that money again :D

Pat,

The Shriners hospital that prescribes the Spinecor brace is in Erie, Pennsylvania. As far as I know, any brace prescribed through a Shriners hospital is free of charge to families.

cherylplinder

01-12-2006, 10:26 PM

Thank you for all your input! Y'all are so supportive and encouraging. I don't think I could have made it throught the past few weeks without reading your posts. (Catch the "y'all"? You can tell even from what I type that I'm from the South! :):):))

We don't have any sleds or alpha dogs, but I have a doberman that's up for grabs. You could teach her to pull a sled, Celia. She's strong, but you'd have to get her a coat. She gets cold easy. I'd be happy to bring her to you!
We're coming to Montreal to see Dr. Rivard January 24th! He will evaluate Rachel then and let me know if she is a good candidate for Spinecor. It would be a big bonus to get rid of this dog!!!!!!!!

Pat, where do you travel from? The US? Did insurance pay any in Canada? I don't expect mine to pay. If this helps Rachel though, it will be priceless to me.

I am a stay at home mom for the past 15 years. (I homeschool! Yes, I am a few marbles short!) I am a pharmacist, but told my husband I'd rather do without things than leave my kids. Sometimes I am certain I should have let someone else ruin them. At least I would have had some money! Not sure I had a choice anyway, as many health issues as we have dealt with! I'm not complaining though. The tapestry of life, its ups and downs, I love. ( I wouldn't mind fewer downs. I think I could still appreciate my blessings!)

I keep my license current, though. This brace may put me back to work! My middle child, William, 12, is an insulin dependent diabetic since age 4. I don't know if our new insurance will pay for pumps, pump supplies, insulin, and strips like our old policy. Insurance is 1300 a month, but they like to make money.

Gee, I'm rambling! Pray for us!

Catch you later!

Celia Vogel

01-13-2006, 08:45 AM

Cheryl,

I can soooo relate to the ups and downs, I think of them as jolts to the system that forever keeps us on our toes - maybe ages us a little ? I'm so glad Dr. Rivard was able to fit you in within such a short period of time and hopefully things will work out.

We don't have any sleds or alpha dogs, but I have a doberman that's up for grabs. You could teach her to pull a sled, Celia. She's strong, but you'd have to get her a coat. She gets cold easy. I'd be happy to bring her to you!

Thanks for the offer :D I already have my hands full with a neurotic border collie named Molly.

cyprusmom

01-16-2006, 02:32 PM

Hello everyone,
Just had our doctors appointment today here in Greece. This was an important one since it was the first time the orthopedic saw Anastasia since she was fitted the Spinecor. He found her "stable" but still with a high risk of progression because of her young age and possibility to grow. She grew another 2 cm she is now 1.60m. He said that it was good that she is growing tall without the curve getting bigger. He only examined her with the scoliometer her thoracic rotation is stable 11-12 and did not request an x-ray at this point not important he said. May 3rd will be the decicive visit and will get an x-ray. If she stays stable we continue with the Spinecor and will see her every 6 months, if she gets worse he will plan surgery.....(Well, you know ALL orthopedics are surgeons so surgery IS part of their treatment). Did not argue or ask anythink about surgery at that point. In my mind I only think positive results with Spinecor but I know as May will be approaching I will be a nervous wreck.
Did you all get instructions to do the exercises with the brace on? My daughter has been doing them without it but the doctor emphasized that the brace should be on.
Pola

MATJESNIC

01-16-2006, 02:49 PM

Hi Pola,
I am glad that Anastasia's curve is stable. I assume he confirmed everything the spinecor doctor said. I agree with you that surgeons are going to prepare for surgery because that is what they are trained to do. I have said a prayer for Anastasia that this brace continues to hold her curve. We both know our girls are at "high risk." That is not news at all. Did the Dr. have anything positive to say about Spinecor?
As far as exercises are concerned, they are to be done in the brace. Every movement that is made is supposed to be conditioning the body to be made correctly. That is why our girls should have their 2-hour break when they are just sitting around watching t.v. or doing homework. When they are active in dance, or running around, or playing a sport, they need to wear their brace. Did your surgeon say this to you today or did your Spinecor Doctor say it? Because I thought the surgeons didn't believe in exercises for scoli.
Anastasia mentioned something about possibly coming to the United States this summer? We would love to meet you somewhere if you come. Let me know. Take care. My thoughts are with you. If our girls need surgery, we will all get through it like all the other children have. We are in the same boat even though we live so far away!
Melissa