spinecor

[gerbo]

i really need to study that article as that theory fits in completely with what I think.

rather than hanging from monkey bars, I need to resurrect my idea to start using an inversiontable and try to get lisanna doing some exercises whilst she is on it, thanks for digging that article up celia

[rtremb]

I called Ontario Assistive Devices Program today to inquire whether the Spinecor brace is covered - of course, it is not. They only cover TLSO braces. This is the second time our daughter's brace has not been covered. I just finished writing a long complaint to the Ontario Ombudsman's office that this represents unequal treatment for the children of Ontario.

Since these programs are paid for with our tax dollars I think all Ontarians should be treated equally. Furthermore the Spinecor brace, if used early enough, has the potential to prevent a lot of Ontario children from having very expensive surgery. I think it is time the Ontario Assistive Devices Program, a government funded program, got up to date with the times and started covering more than just TLSO braces.
Ruth

[anwmom]

Ruth:

I ran into a problem getting my Daughter's brace covered in Ohio. After Humana Ins. denied the claim for the same reason. I filed an appeal and her orthopedic dr. conducted a peer-to-peer review with the Medical Director at Humana that denied the claim. After the review, Humana overturned their decision and it was covered at 100%.

Good luck in your efforts to get the Spinecor covered. Please let me know if I can be of any help.

Stephanie

[mpj]

Thanks for the great article Celia. :)

Sarah

[rtremb]

Stephanie:
Since changing government rules is a very slow process I doubt that we will get the Spinecor covered by Ontario Assistive Devices program however I think there is something wrong with a government program that limits (or even dictates) the choice of treatment to Ontario parents and my hope would be to change things for future children who require a back brace. I think since every taxpayer pays for these programs they should be equally available to all.
Ruth

[anwmom]

Hi Ruth,

I understand the slow process. I have talked to a few moms in Ohio that have been denied coverage of the SpineCor also. I agree with you that there is something wrong with government dictating the type of treatment. They government and big insurance companies (in the U. S.) are controlling the doctors and the treatments they prescribe. It's such a disservice to the patients and they are preventing patients from receiving the latest and best technology for that patient.

Take care!
Stephanie

[Celia]

Thanks for the great article Celia. :) Sarah

You're welcome :)

Gerbo,

What do you mean by inversion table? Is that similar to vertical gravitational traction?

[rtremb]

We are going to Montreal next week to have Esme's Spinecor brace fitted. I am wondering if the girl's clothes still fit them when they get the brace?
Ruth

[gerbo]

What do you mean by inversion table? Is that similar to vertical gravitational traction?

don't know, what do you mean by vertical gravitational traction??

http://www.physiosupplies.com/acatalog/Health_Mark_Professional_Inversion_Table_from_Phys io_Supplies_UK.html >>> this clarifies

[Celia]

don't know, what do you mean by vertical gravitational traction??

http://www.physiosupplies.com/acatalog/Health_Mark_Professional_Inversion_Table_from_Phys io_Supplies_UK.html >>> this clarifies

It was referred to in the article but I think it was a bit more complicated. Visually I can't see how stretching the legs will have any effect on the spine....wouldn't hanging from monkey bars have a more direct effect? I don't know. :confused: Anyway here is an excerpt from the article Regression of Juvenile Idiopathic Scoliosis William E. Stehbens* and Rachel L. Cooper (p 329)

"Vertical gravitational traction has been achieved by suspending children upside down by the feet while a pelvic brace with bars is held by the hands (Majoch, 1981). Treatment duration was increased from 12 min to 1 h daily and the loading on the head was increased up to 25% of the body weight for 4 weeks preoperatively and combined with muscle massage, manual curve correction, and swimming to improve lung capacity. The program was not applied to children with hypertension or a spinal or neurological disorder. A curve of 117° in a 12-year-old boy was reduced to 57° in 4 weeks and results were considered better than with
horizontal traction. Tabjan and Majoch (1980) used vertical traction 6 times per week for 3 to 6 weeks preoperatively, the patient hanging from parallel bars by the legs and feet with additional weight or traction applied to the neck. This method improved respiratory capacity and allowed better
corrective force on the spine despite its discomfort to the feet and legs. Thus, despite its hazardous and unphysiological application, traction remains the only technique known to reduce the curvature.

[mpj]

Hi Ruth,

Madeline needed to get clothes with elastic waist bands and switch from slims to regulars. She is kind of crazy about how clothes feel, so she prefers to have a looser fit. Also, she now prefers to have shirts with small neck openings so her brace doesn't show too much.

I would bring loose fitting clothes for the trip.

Good Luck.

Sarah

[jillw]

Well, we went to Montreal on Tuesday and got my daughter a spinecor brace. They measured her curve slightly larger than the previous xrays at 19T/13L. After (and in brace) they measured her at 10T and 15L. I'm pleased with the 10T, but don't like that the compensatory curve increased if only 2 degrees although as others have posted before, the doctors were not concerned about it. I think I would have been happier if her upper curve reduction was less and her lower curve unchanged (something symetrical like 13/13).

Yesterday when we went to take the brace off for a while, I saw that the pelvic girdle had twisted so of course I'm worried about what damage that could do if it happens a lot. I'm also worried that I'm not putting the brace on her correctly...I'm snapping the straps in the right place, but am not sure the bands are positioned the right place in her body (you know how they could be an inch or two higher or lower and I'm not sure where the ideal spot is). I just don't want to do any harm! She's having a hard time adjusting to this and I certainly want it to be for a good cause, not to make things worse! (Yes, I realize this brace is a hundred times better than the others in terms of adjustments, but she doesn't know that. She only knows that her world has been turned upside down. But she did sleep better last night than the first night so hopefully things will continue to get better)

I guess basically I'm a big pile of worrying - our follow up appointment next month can't come soon enough! :) Do they take xrays at the 1 month follow up? When will we go back after that?

By the way, what is considered a significant rib hump?

Ann, thanks for the tip about Ruby Foos. We stayed there and it was definitely convenient to the hospital.

Ruth, so far we're finding her bigger/loose fitting clothes still fits her and we have definitely gone with the elastic band items the past two days also. Her jeans don't come close to fitting, but she was getting close to outgrowing them anyway. Good luck with your visit. Let us know how it goes!

Thanks everybody!!!!!!

[leigh9p]

We just had our 1 mo. check up and her improvement with brace on went from 28T to 20T and 13L to 9L. He was happy with that. Me too. She hasn't even gotten up to the full 20 hours yet. Her brace was loose and the pelvic girdle was being pulled to the side. He was not as concerned with that as the upper straps being too low on her hip. He said to make sure they stayed on her waist - so you might just check that. He also said I should wash/dry the top every week to maintain it's strength. The lower part needs to be loose enough so she can sit in it.

I know - it's been hard. I had him give her a lecture on how important full wearing is. She will have to start wearing it to school next week and I know she is dreading it. But she has been preparing in her mind how she will dress. It does fit under her jeans OK - but she has a tiny butt and has often had trouble getting the jeans to fill that in - so this does :)

The pain in her hip that I mentioned earlier has subsided - it was because the pelvic belt was too tight. Now we have to go for PT to get the proper exercises for her.

[Celia]

jill,

i don't want to jinx myself here, but we have not had any problems with the snaps (knock on wood!) instead since lucas is so small when he got the brace (4 1/2 yrs old and now almost 6), the velcro straps on the pelvic base would always loosen and eventually pop open. my husband and i rigged up a strap with a buckle like this directly onto the pelvic base straps:

http://www.rei.com/product/709043

good luck!

deshea

Hey Jill,

I don't know if the belt that Deshea mentioned would help prevent the pelvic base from twisting ??? Given your daughter's age, I wouldn't worry about the rib hump. I think it's called gibbosity and they measure it with the scoliometer? They will take an x-ray at the one month followup and for most parents it's a big sigh of relief that things are holding or even improving. After that it's a LONG 5-6 month stretch before the next appointment and that's when life happens ;)

[gerbo]

Visually I can't see how stretching the legs will have any effect on the spine

i doubt you can really stretch legs this way. Clearly the spine is stretched by the force by the weight of the proportion of the body "below" (below in the upsite down position) the curvature

[desheah]

i just thought i should say that i did jinx myself :rolleyes: a couple of days after posting, strap #2 (he's right thoracic, left thoracolumbar) snap broke. thankfully my husband is handy. he drilled out the snaps on the strap and the pelvic base. we got replacement snaps at a place called the fabric place and voila fixed. we just hope that dr. coillard doesn't decide to move the strap otherwise we'll have to replace another part on the pelvic base to accommodate.

as far as the webbing, i'll have to take a picture of lucas or just the pelvic base with the sewed on webbing to show you. i know that i always need a real picture to "see" what others are talking about. the base still does move a bit, but not as much without the webbing.

deshea

[Celia]

i just thought i should say that i did jinx myself :rolleyes: a couple of days after posting, strap #2 (he's right thoracic, left thoracolumbar) snap broke.


:D :D


Gerbo,

I like the idea of traction everyday as an adjunct to the spinecor. I think it would work!

[gerbo]

........it could......

[desheah]

okay, here's a picture of the pelvic base with the strap.

[jillw]

Deshea, Thanks for the picture....so you sewed the strap onto the velcro pieces??? How long has he been in the brace? Bummer about the snap breaking...sorry to have cursed you! Neither my husband nor I are handy so when a snap breaks it will be a major ordeal here!
Jill

[desheah]

jill,

yes, we sewed the strap right on to the velcro straps although i noticed in the manual of the spinecor on the adolescent girl that the straps go around to the back and not in the front as they do with lucas'. what are yours like? i'm not sure what you would do if they went around the back.

lucas has been in the spinecor since july 2006 (15 months). he turns 6 yrs old next month.

welcome to the group!

deshea

[jillw]

I just noticed the same thing about the picture in the manual also. However, Katie's velcro comes to the front unlike the manual. I noticed in your picture (and believe I have read others post in the past) that he is wearing pseudo boxer type underwear? Did you have snaps put in for him to go to the bathroom or do you do something else? I'll have to search old messages because I think others have posted on this in the past (hopefully I'll find the old messages)

We like the spinecor bodysuits, however, the crotch of the bodysuit doesn't seem quite wide enough and the crotch snaps often end up on her bare skin. (not to mention the issue of chafing thigh straps).

[desheah]

you'll definitely have to read back through the posts to find out what other girls have to do to go to the bathroom. i know that it has been discussed here a bit and off-board through private e-mails so the nitty gritty isn't there for everyone to see. :D

since lucas is a boy, i've just bought him regular white undershirts and then his underwear goes over the brace. he does not need to take the brace off at all to go to the bathroom. if he did, we would definitely have some problems. his hips sometimes are a bit red, but so far the thigh bands have not caused any chafing (knock on wood).

in the picture that i posted, that is his shirt that goes so low. the shirt definitely doesn't stay put after moving around, but it does stay where it is needed -- underneath the plastic pelvic base.

deshea

[rtremb]

Well we are going to get the Spinecor for Esme tomorrow and wondering how she will take to it. Really hoping it isn't uncomfortable for her and she's able to wear it. Also having a teeny bit of doubt about going this route since her curves are so big and wondering whether Cheneau Light would be a better choice. We are thinking though that we could go with Cheneau Light & physiotherapy in three months or so if Spinecor isn't working. Given there are regular check-ups with Spinecor we will know if it is working or not. We really want to give Spinecor a try since it is better for her back muscles and there is a small chance (in her case) of curve reduction.

I am reading that the Spinecor straps on the legs rub a bit sometimes - has anyone tried to have a bodysuit designed that has fabric going down the legs a bit? One of my neighbours owns a company that designs trendy tight fitting clothing for kyaking and I am wondering if it would be worth asking him about a suit made like this.

Ruth

[Sherie]

Ruth

Good luck tomorrow. Sheena always wore bike shorts and a light weight t-shirt but that meant she had to remove the brace in order to use the restroom. She was able to wear the brace full time very quickly.

Where would you go for the cheneau light brace if you were to go that route? Is that the one with a bar on the back and several pieces attached to it? I posted a thread a few weeks ago, New brace developed in Germany, maybe it's not new but they were still trying to get a patent on it. It cerainly looked more comfortable than the TLSO.

[rtremb]

Sherie:

Thanks for your post - you must have so much on your mind at the moment with the surgery coming up - I am thinking of you both often and hoping everything goes well for you.

I am thinking that if the bodysuit included fabric that went down the legs a bit like short shorts it would avoid the inconvenience of having to remove the brace - I have to think though that Dr. Rivard/Colliard must have tried this already - I will ask them about it. Clothing designers can do some pretty amazing things with cotton/lycra and with the growing popularity of the Spinecor brace if someone could design something that worked they'd pobably make a bundle!!

For the Cheneau Light brace it is available from Dr. Rigo in Spain but think it is now available in England and the U.S. I am British, with all my family in England, so we could easily go to England if we had to. Don't know about going to Spain though - there would probably be language problems with that not to mention the expense! I have been reading the posts by ScoliosisGirl (Florida resident) who wears the Cheneau Light and her curves are similar to Esme's and she is getting good results so far with this brace combined with physiotherapy. She was recommended for surgery but her parents didn't want to go with that - hence the Cheneau Light. She goes for a check-up next month and I will be very interested to hear about her progress. She has a website which tells her story - http://www.myscoliosisstory.com/

Ruth

[Sherie]

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1805423

I looked at my old thread, it is the Cheneau Light, here's the link to the study I found. It looks promising.

If you don't get any correction at the initial fitting, would they still continue with it? We had only 2 deg. correction at the initial fitting, I think that may be a critical factor in the success of the brace, but I don't know that for a fact.

[rtremb]

Sherie:
I am thinking that if there isn't a good correction on the initial fitting we will give it one month and see if it improves. If it doesn't I think it would be a clear indicator we are wasting valuable time. We are hoping she will have good correction though. Her lateral bending x-rays taken less than a month ago showed 25 degree thoracic curve reduction and almost straight on the lumbar - if that has anything to do with how much correction we can expect. She is very flexible and has no very little visible deformity. Her shoulders are sitll level however her pelvic bones are not so we might need a shoe lift if the brace puts her pelvis into its correct position. So many things to think about......
Will go to the link and read...thank you.
Ruth

[christine2]

Hi Ruth

I was working with a designer but it was put on hold due to a personal situation with her. I am not sure when we will be working on it again so please if you can get someone to look at it do it. We were working on a Unitard with bikeshorts and crotch snaps. The snaps need to be high in front, We love the spincor material they are just soo expensive.

[rtremb]

Thanks Christine for your post. I will wait until we have the Spinecor on to see if my idea would work. The neighbours company is Level Six and they have clothing designers on staff. I looked at his website to see if there was anything like this already and there isn't however they work with the kind of fabric I was thinking would work for this. I was thinking a breathable cotton/lycra or spandex fabric designed to be tight fitting so there are no wrinkles to cause more rubbing. Our other next door neighbour owns a company that makes clothing for the military and they have tons of experience with design of clothing so I could also talk to them.
Ruth

[MATJESNIC]

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

[rtremb]

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

[MATJESNIC]

Ruth,

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


The best of luck to your family.

[WNCmom]

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

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

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

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

Mary Ellen

[jillw]

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

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

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

[MATJESNIC]

Mary Ellen,

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

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

[WNCmom]

Jill--

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

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

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

Mary Ellen

[Celia]

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

[WNCmom]

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

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

Mary Ellen

[Celia]

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

[jillw]

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

[WNCmom]

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

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

Mary Ellen

[leigh9p]

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

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

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

[rtremb]

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

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

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

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

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

Our next appointment is on November 28th.

Ruth

[Celia]

Ruth,

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

[WNCmom]

Ruth--

How difficult it must be to get such conflicting and discouraging information from the Montreal docs. My heart goes out to you--with the knowledge that, while we hope for the best, we may be in the same situation not too far down the road. My son is a bookworm, too! And I'm hoping for very good results for Esme.

On the practical side, I want to offer some information I got from Dr. Ouellette, who says he works with both the current Spinecor manufacturers and trainers and Drs Rivard and Collard in Montreal, who he highly respects. He mentioned that in his opinion as a chiropractor, the Montreal docs like to situate the hip belt too high on the pelvis--Ouellette places it lower so that the elastic bands that snap to it can be held tight enough. Is it possible that the higher hip belt is causing the chafing and discomfort? My son (who is admittedly very thin) is having no trouble with either the crotch straps or thigh bands, and sitting is a non-issue. Two weeks into the brace, he is now wearing it 20 hours a day.

I realize there are strong opinions on this forum regarding chiropractors vs surgeons and a strong (and justified!) allegiance to the inventors of the brace, so I hope everyone will take this for what it is--just another piece of information that we all have to take (or not take!) and make our own decisions on. I'm not suggesting anyone do anything differently than what they're doing now.

Ruth, I hope in the next few days things will calm for you and you'll be able to see clearly the next step. That's the best we can all hope for as we move ahead on this journey.

Mary Ellen

[Celia]

...so I hope everyone will take this for what it is--just another piece of information that we all have to take (or not take!) and make our own decisions on. I'm not suggesting anyone do anything differently than what they're doing now.

Ruth, I hope in the next few days things will calm for you and you'll be able to see clearly the next step. That's the best we can all hope for as we move ahead on this journey.

Mary Ellen


My sentiments exactly! We can only offer suggestions as to what we would do in similar circumstances and it's up to you to make the final decision... good or bad. If you want to do the weights on the head go ahead :rolleyes: :D

[Celia]

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


I got a message back from the secretary in Montreal and they don't do physio in Montreal. They only do it in Spain and dr. Coillard doesn't feel Deirdre needs it. I was looking into it because of the neck curve but maybe it's a non-issue? I do tend to stress over things that turn out to be insignificant in the end.

[jillw]

Ruth, I hope the Spinecor works in your situation! 10% doesn't seem like great odds....but then again the odds of getting scoliosis severe enough to require treatment is well under 10% and we've all beat those odds (to our chagrin) already! I hope it holds the curve for you or that you find whatever treatment that can hold the curve.

MaryEllen, that's interesting about Dr.Oullete's theory on hip placement...i wonder if Dr. Coillard has changed that because one of the things to me is that it seems like Katie's belt is so low! - although it will go a little higher on the back side than the front which I know its not supposed to but I can't quite get it to stay symetrical yet.

Celia, I'm not too surprised to hear they don't offer directions on the "spinecor" physio since I recall reading on the board that others had been told that those in Montreal believe that wearing the brace is a form of ongoing physio. I, too, tend to stress over things so I can relate to how you feel...the problem is while some of these issues might not matter in "the end", our children have a good 8 or more years before we've really hit "the end" so its hard to know what is insignificant and what matters, isn't it? That's what drives me crazy! And while our children may not need physio, per se, I can't help but wonder if there is a chance it could help as an adjunct??? At least that's how I feel about Katie. I'm hopeful Spinecor will work for her but I also want to give her every advantage that it would work. Given the nature of scoli, it seems to me that there is no one thing that can control it for sure, but that a more holistic approach might help push the odds in our favor (at least maybe for those at high risk of progression because of their age but whose curves aren't too large yet). I'd love to see more studies on the role of physio or exercise on those with "milder" scoli curves. I scheduled an appointment with a Pilates instructor for Katie this weekend. Assuming we actually continue this over time, I figure that while it may not help the curve directly, that a person with strong core muscles is better than somebody who does not. My daughter's natural muscle tone is a little low to begin with (hypotonia) so I don't want her to be disadvantaged by that. They seemed willing to modify some exercises to accomodate areas that might need extra stretching and those that need extra strengthening...we'll see..... (in fact if Katie didn't hate it too much I'd love for us to do some mother/daughter pilates!!! This mother's core could benefit from some extra strengthening also! :rolleyes:

[rtremb]

Esme made it through the whole 8 hour school day with her brace. All the teachers had been told she would be wearing it and were very considerate with her about it - letting her move around if she needed to and take it easy in gym, etc. Her friends all seem to think it is pretty neat and are encouraging her so this helps - no one is making fun of her which is a big relief. I have loosened the crotch straps a bit hoping this will make it a bit more comfortable for her.
Ruth

[structural75]

Given the nature of scoli, it seems to me that there is no one thing that can control it for sure, but that a more holistic approach might help push the odds in our favor (at least maybe for those at high risk of progression because of their age but whose curves aren't too large yet). I'd love to see more studies on the role of physio or exercise on those with "milder" scoli curves. I scheduled an appointment with a Pilates instructor for Katie this weekend. Assuming we actually continue this over time, I figure that while it may not help the curve directly, that a person with strong core muscles is better than somebody who does not. My daughter's natural muscle tone is a little low to begin with (hypotonia) so I don't want her to be disadvantaged by that.
Just wanted to comment on you're remarks and echo that sentiment. Also wanted to add something to this whole Pilates wave going on. These comments aren't directed at you Jill, just a general blurb.

I'd agree completely with you on taking a more "holistic" or comprehensive approach, regardless of the degree of curvature. I think it's important to understand that even if someones curve is not yet moderate or severe it doesn't mean that they can't benefit from treatment... In fact they are more likely to respond at that stage because there is less bony/disc deformation. Once it gets to the moderate and severe stage it's tremendously more difficult to change what has happened.

I think it's worthwhile to avoid taking the same approach to scoliosis that we take to health care... Waiting for the crisis to occur before taking action. There is a lot to be said for preventative medicine here, and elsewhere.

On core strength... Despite Pilates popularity these days I think it's important to note that core strength is often overdone in the pilates world. Too much pilates for too long ends up creating too much rigidity in the pelvis and spine. Sure, that makes for a "stable" back because it doesn't articulate very much (like wearing a muscular corset). You should be very careful about introducing Pilates to a scoliotic individual. Usually with scoliosis there is a marked increase of tonus and shortening of the inner thigh muscles (adductors) and psoas/iliacus in the lumbopelvic region. These are major areas that influence a scoliotic curve and are also conversely influenced by the curve. Pilates focuses very heavily on these muscles with all of the hip flexion and abdominal strengthening.... Which is precisely not what you need to be tightening any further. There are many top Drs/PhDs in the field of pelvic and spine biomechanics and rehab who disagree strongly with what Pilates is doing to people.

I would suggest going to a PT for the purpose of your daughter developing strength/stability to address her hypotonicity. Pilates instructors have very little anatomy training and virtually no pathology background, especially rehab type work. Only Pilates instructors who are also PTs should be working with these types of individuals... otherwise you're taking quite a risk and you won't know the effects generally until it's too late.

[Celia]

... I, too, tend to stress over things so I can relate to how you feel...the problem is while some of these issues might not matter in "the end", our children have a good 8 or more years before we've really hit "the end" so its hard to know what is insignificant and what matters, isn't it? That's what drives me crazy! And while our children may not need physio, per se, I can't help but wonder if there is a chance it could help as an adjunct???

This is exactly how I feel! I don't think physio with a P.T. in Canada is covered by OHIP unless it's prescribed by a doctor and therefore it's an out of pocket expense - I'll have to check into this. Come to think of it....I don't think we can get physio without a doctor's script!!!!

[jillw]

Structural, thanks for the information-there are so many things to think about!!! I wish I had millions of dollars because I would sponsor all kinds of research into how to prevent earlier curves from progressing... the doctors either seem to frown on exercise/physio or say that no study has shown it helps...I'd like to see studies that specifically focus on those with smaller curves, because as you say, intuitively it seems to me that intervention at that time might have a higher likelihood of success. So do you think one 1/2 hour pilates class a week with a little work at home for 15-20 minutes or so a couple times more a week would do damage? They know we are coming because of her scoliosis and they are working with a few other scoliotic (adults) also. I want (and plan) to look into physio also; however it will take me longer to research who I'd want to bring my daughter to...I thought in the meantime I'd get some sort of toning work started (although had been thinking at the mild amount of exercise we'd be doing it that it might not really make much of a difference). What are your thoughts on the Schroth method of physio? (you've probably posted elsewhere about that, I"ll look up your old posts)

Celia, in the states we need a script also...since we're seeing dr. rivard I don't think a script from an out of country doctor would work. Our insurance will only cover a limited number of sessions, but I would very much like for her to do it (and nobody by us does Schroth). I'm thinking that if I could find somebody who has a scoliosis focus, I'd try to get our pediatrician to write a script. Then maybe we could go for tuneup sessions from time to time even if I had to pay out of pocket.

[rtremb]

Celia:

You are right that you need a doctor's prescription for physio in Ontario to have it covered by OHIP. Only some physiotherapists are OHIP authorized too. We have a script from the Children's Hospital for physio so I faxed it in to the hospital physio clinic hoping to get Esme in for treatments. They wrote us a very nice letter explaining it would be months before she would be seen because they are so busy - we are not impressed!! We are currently looking for an OHIP authorized physiotherapy clinic that works with scoliosis patients.

Last night I found (on the internet) an osteopath in Ottawa who is also a physiotherapist so I have written to him to find out if he is working with scoliosis patients. We are interested in exploring the structural integration too and my husband thinks he has found someone in Ottawa doing this.

While we are hoping the Spinecor brace will hold Esme's curves where they are we think the chance of this is greater if she has some other treatments as well. Also to achieve curve reduction she will definitely need some other treatments.

Ruth

[emma12]

Somewhere I read of a clinical trial that was specifically focusing on what was thought to be weak muscles on one side of the spine that were allowing scoliosis to progress (or even develop). They were using a machine that was designed to specifically work particular muscles in the back. I can't remember where, but it was within the last year, unfortunately they were taking only those with curves of less than 45 degrees (my daughter's already exceeded that), so I didn't look into it too much. I believe it may have been at Cleveland Clinic or somewhere in that area.

My daughter used an exercise program combining the exercise ball with pilates. Although her curves were rapidly progressing during this period, she was not brace compliant (and one doctor told her to quit wearing the brace - curves were already beyond the point of bracing), something kept her spine flexible. I believe the exercising with the ball, and the stretching, rolling over it to flex the spine...helped tremendously with keeping the curves flexible.

[rtremb]

Emma: Was the clinical trial Torso Rotation?
Ruth

[structural75]

Jill,

Scroth is a great way to go as far as physiotherapy is concerned for scoliosis.

structural

[emma12]

rtremb,

I didn't think it was the torso rotation, however, I just spent some time looking for the trial on line, and the only one I can find now that sounds similar is the one with the torso rotation machine---so, perhaps that is it??? I don't know, I really can't find the exact site that I read before. Sorry====if I come across it again, I'll save the link and post it.

[gerbo]

ruth, i hate to say it, but i would be so, so surprised if the spinecor would make any difference at all and really you need to be planning your next moves (which i am sure you are doing already.

neither do i think that with a curve like that any osteopath or chiropracter is going to make any bit of difference.

torsorotation is still "my hope", but if it works at all, it is with smaller curves (although "list contains somebody with 50 degrees who improved) http://www.medxonline.co.uk/fileadmin/user_upload_en/Research_Articles/prelimadolescentscoliosis.pdf

i can only see one obvious way forward (and by al means give the spinecor a month) and that is to accept that surgery is your main option, and start getting used to that idea!! People get through surgery ok and have an excellent correction and quality of life after; it is not the disaster we all feel it is (I am half talking to myself here)

the only other "remote" option one could consider would be a very aggressively correcting hard brace, but you would need a hell of a lot of correction to have any chance of improvement.

where to get one from is quite difficult to work out as there are no figures available showing initial correction rates of different clinicians/ hospitals (there should be!!)

on the subject of these cheneau braces, in the end it is more about the person who makes them rather then the exact model or make.

i am not aware of anybody ion the UK making them

the only pure hearsay reports i have picked up re succesful bracing in big curves have come from a german forum; http://www.skoliose-info-forum.de/index.php , they do a english thread so you can make your own enquiries and they are very good in replying. On there they are very lyrical (similar to enthousiasm on this forum re dr coillard and rivard) about one specific bracemaker, a mr rahmouni, with very high initial correction rates reported (but possibly hell to wear, and little info about final outcomes)

you could have a look at his webpages to get an idea of the amount of correction he "promises/ suggests he achieves" http://www.rahmouni.de/

whether it is worth considering or not; i really don't know and in alll fairness, in our case, i think it would really be very hard for our daughter to revert back to a hardbrace, with no garantee of succes.......

i just though i share these thoughts.....

[Celia]

Gerbo,

Is Lisanna doing the Spinecor physiotherapy through Mr. Mills? If so, what is involved?

[rtremb]

Gerbo:
Thanks for your post. We are definitely not prepared to accept surgery as an option yet. We will not have the surgery done for cosmetic reasons. Unfortunately we have not been able to find torso rotation equipment in Ottawa - if we could we would be doing it. We are looking seriously at structural integration (SI) having read several research articles on the role of fascia in scoliosis. We have some calls out to physiotherapists at present who do SI and are hoping they will call us back to discuss. If we can find therapy or chiropractic or exercise or osteopathic treatments to keep Esme's curves where they are we will be happy with this for now. We hope to buy her time until new treatments become available. There is tons of research being done and we can only hope and pray that something will emerge during her lifetime that will avoid the spinal fusion.
Martha Hawes book Scoliosis and the Human Spine arrived today and my husband and I are finding it a very interesting read so far. As an adult she successfully reduced her surgical curves by 50% with exercise.
Hope springs eternal!!
Ruth

[WNCmom]

Ruth, you're an inspiration. Thanks for the tip on the book. We are also looking at more exercise options.

Mary Ellen

[rtremb]

We have an appointment with an advanced structural integration speicalist on Thursday afternoon. She has 20 years experience. We are excited to find out if she can help Esme. There are some websites we have found which show the treatment for SI scoliosis I will put them on the forum under a different thread.
Ruth

[rtremb]

Not too long ago I complained to the Ontario Ombudsman's office about the Spinecor brace not being covered by the Ontario Assistive Devices program. I posted a short note about it on the forum. This program provides about 75% financial coverage of TLSO back brace cost to Ontario residents.

Yesterday afternoon the Ombudsman's office called me back, after having had discussions with high level staff at Assistive Devices about my complaint. The Ombudsman's office has asked that I contact the manufacturers of Spinecor and ask them to submit detailed information about Spinecor to Ontario Assistive Devices in order that it can be considered for inclusion in this Ontario government program. I am to stay in touch with the Ombudsman's office about progress with this.

I emailed Dr. Rivard to ask for the correct contact information for Spinecor and he replied that it is the Head Office in England. I will try to reach them by telephone or email and hopefully they will submit the required information and the Spinecor brace will receive appropriate, unbiased consideration for inclusion by Ontario Assistive Devices.

While our family will likely not benefit from this my hope is that other families will. I am hoping that if Spinecor is covered by Ontario Assistive Devices more Ontario doctors will prescribe this brace when children's curves are lower when they will receive the most benefit from it. A frustration for our family has been that no action was taken when our children's curves were lower which might have prevented progression.

Ruth

[Celia]

Ruth,

What an incredibly wonderful thing you did! When Deirdre was still at Sick Kids the orthotist expressed the frustration many parents felt who were at one time getting reimbursed from the provincial plan for the Spinecor and then it was abruptly discontinued. I wonder if this had something to do with the brace no longer being carried at Sick Kids?? It's a shame these things boil down to money in the end. I don't regret the commute to Ste Justine and having the inventors of the brace treat Deirdre - she actually looks forward to the mini vacations to Montreal and the "Joie de Vivre"

[rtremb]

Celia:
Despite being told by Assistive Devices that they would not cover a brace we obtained in Quebec I have been informed by the Ombudsman's office that they do actually cover braces made/fitted anywhere in Canada. The Ombudsman's office said Assistive Devices suffered from a failure to communicate well with the public!! So if I can get Spinecor to submit the information a Spinecor fitted anywhere in Canada for an Ontario resident should be covered. This is, I think, progress........
Ruth

[MATJESNIC]

Ruth,

Good for you. I'm with you for helping other families even when it doesn't benefit our own children. Don't beat yourself up over not finding her curves when they were low. Dr. Rivard explained to me that there are many types of scoliosis curves and some are the progressive type that do not respond to treatment as well as the other types of curves. It really is not just about finding it early. I have met (and talked with) many people whose kids started treatments when curves were tiny and they still ended up with huge curves. You are doing the best you can and you can't expect any more from yourself.

[qiling]

Hi, all
My name is Elaine,my daughter Jennifer is 11yrs old diagnosied scoliosis on 7/30/07, the curve was T38L20, we seeing Dr.Police in Oakland Children Hospital CA, she had 20days in Boston brace, due to the rashes on the body, she changed to Spinecor by Dr.Deuthman on 09/24/07,before fitting in the Spinecor was T31L20 out brace.T21L18 in brace.
One month x-ray on 10/26/07 was T34L28, Dr.Police was not happy with it, I call Dr.Deuthman, he said Jennifer may have a growth spurt,she needs to stay in the system long enough, Spinecor is an only brace can reduce the curve, he needs an out brace x-ray.
I need help! my e-mail is qling_z@yahoo.com

looking forward to your reply

Elaine

[rtremb]

Elaine:

We have learned there can be a big difference between one doctor's readings of x-rays and another doctor's reading of the same x-rays...it is accepted in the medical field that there can be at least as much as a 5% difference. If possible why not take your daughter's x-rays to another doctor and ask them to measure the Cobb angles? Also my husband tells me it depends how the child stands when the x-ray is taken - this can increase or decrease the cobb angle quite a bit.

Do you know if your daughter's height changed dramatically recently? I measure my daughter's height each week (on the back of the closet door) to watch out for growth spurts. A height growth has always corresponded with an increase in my daughter's curves.

I think it is true that the Spinecor is the only brace which can actually reduce curve size so if I were you I'd stick with this brace especially since your daughter got a rash from the hard brace. Also her curves are smaller so they should respond to Spinecor in time unless they are the aggressive curves that won't respond to bracing treatment anyway. Try not to panic about the increased curve readings - you are doing a good thing by having your daughter wear a brace.

Does your daughter do any other activities to keep flexible like yoga or physiotherapy or exercise?

Ruth

[rtremb]

Melissa:

What annoys us is that our daughter's curves were found early - below 20 degrees but we were told not to do anything at that time and at no point ever did her doctor ever, ever mention the Spinecor brace to us - not once. We live two hours from where it was invented. I cannot understand how our doctor could have been so clueless. Whether or not it would have done any good for Esme we will never know. This is why I feel motivated to get Assistive Devices to cover this brace for future Ontario children hoping the Ontario doctors will no longer be able to ignore Spinecor as a treatment option.

He was equally clueless about stapling when I brought it to his attention telling me it was only done on small children. He also said why have an operation to avoid an operation - obviously not understanding the difference between temporary staples and permanent spinal fusion.

Ruth

[qiling]

Ruth,

Thanks for your opinion.She grew one inch in July 30 to Oct 26, she is 61inches, 98lbs.she has 3 programs softwere from Spinecor 1.right hemistim left pursuits. 2.left optokimetics 3.physiotherapy exercices home program.It takes 15 minutes. I paid $5290.for fitting the Spinecor and the programs on 09/24/07 plus $150 ahead for booking an appiotment, she takes dance class 1 hour a week, an hour swing 2 or 3 times a week.
I want to do best for my daughter, when she was in the Boston brace, she had a very hard time, sometimes we cry along.I wish the Spinecor works for her. but Dr.Police mentioned that, he tried Spinecor 2 years ago, he likes the Boston better, the hard brace has 80% successful and Spinecor also claim 80%.he recommended the hard brace.I afraid that the bad out come causes by my mistake.

Elaine

[gerbo]

elaine, who made the last x ray (the 34-28), and was it with the brace on or off?

gerbo

[qiling]

gerbo,
The x-ray was in Spinecor 34/28 taken in Oakland Children Hospital for Dr.Police10/26/07, he did not have one. the original x-ray ordered by Jennifer's family Dr. was 38/20 which I bought it with me,that was first diagnosed she has scoliosis,the 09/24/07 x-ray 21/18 in Spinecor he did not have it.

Elaine

[leigh9p]

Thought I'd jump in on the subject of exercise. Taylor was fitted a little over a month ago and will be starting a program next week. It's being given by a chiro Dr. who specializes in scoli in San Francisco. I don't know what will be involved, but I will certainly let you know.

That was shocking to hear that Pilates is actually causing people problems! I would they they must be doing it in the extreme.

Elaine - I understand your concern, but agree with the others about x-rays varying. The other thing is if Dr. Police is a regular surgeon - he will not be very supportive of the Spinecor. They typically aren't. I know we all worry if we are doing the right thing for our kids - it seems impossible to know for sure. At some point we have to make decisions and then trust our guts. I think the Spinecor will work if anything will. Like others have said, if your child has aggressive curves, no brace is likely to work.

Taylor pretty much hates the brace, but she is wearing it 20 hours a day give our take. It still hurts her hip at times. I'm hoping the exercise and chiro treatment will help that. Do you all have regular chiropractice done on your kids with scoli? It makes me a little nervous frankly. I sure hope they can't make anything worse. They always say she is really tight and she does seem to feel a bit better after.

As for the fitting, our Dr. said that the leg bands and belt are just for stabilizing the straps so they don't have to be tight. I know the belt twists around a bit when Taylor wears it. Again, I sure hope this is OK. He wasn't worried about it. So many things to consider.

[structural75]

leigh9p,


Do you all have regular chiropractice done on your kids with scoli? It makes me a little nervous frankly. I sure hope they can't make anything worse. They always say she is really tight and she does seem to feel a bit better after.If they are always saying she is really tight then maybe it might make more sense to address that tension/tightness in the soft tissues rather than trying to 'adjust' bones within that sea of hypertension.??? There's little chance or purpose behind adjusting bones if the soft tissue responsible for their positioning is in an aberrant state of tension... just waiting to pull them "out of place" again. Just my opinion... It might even help what the brace is trying to achieve... ???

[Celia]

I wonder if anyone is seeing an Osteopath/Spinecor provider? I notice there are a few listed in the Spinecorporation website and what their treatment protocol is? I imagine if Chiropractors can add manual adjustments, head weights, vestibular testing, vitamins to the total price of the brace what the Osteopaths offer :confused: It would be interesting.

[WNCmom]

About chiropractic--our local chiropractor (not a scoliosis specialist) was the one who diagnosed Sidney's scoli to begin with, and sent us to an orthopaedic specialist. Sidney gets gentle adjustments every other week. Three weeks ago, when the Spinecor was fitted by Dr. Ouelette (a chiropractor) in Atlanta, he sent x-rays for our local chiro to look at and suggested we have our local guy call him so he could describe the curve and rotation and advise him on how to adjust for best results. It's taken them a while to connect, so we haven't yet had an appointment that reflects that information transfer.

So far, it's impossible to tell if the chiropractic has helped, but it's hard to imagine it has hurt anything. I did talk to a dad whose daughter ended up with surgery--the daughter had adjustments all along, and apparently the surgeon was quite impressed at the flexibility of her spine and the correction he was able to get. The dad felt it was due in large part to the chiropractic.

Elaine--As I mentioned, Sidney has been in the Spinecor just three weeks, so I'm not really qualified to weigh in on this, but it does seem important to give the brace a chance to work. I can see how the increased lower curve could be scary. What worries you more, the curve or Dr. Police's reaction? Sometimes it's tough to be in the middle.

Mary Ellen

[Karen Ocker]

Structural:
My Rolfer supports my Pilates program--which is individualized-- and my Pilates instructor sees the difference after my sessions. Granted I am fused T-4 to sacrum so we are working on residual effects of being deformed --since I was eleven and I am now 65!!!

Are there any publications in your field stating that Pilates is detrimental for scoliosis??? Before my revision surgery--before I found Rolfing--it was the only modality I tried which gave me any pain/stiffness relief over the years. I did ask my Rolfer about scoliosis treatment and she really could not give me an answer.

[structural75]

Hi Karen,

There's no formal data/studies that I know of that support my comment/observations. Just so you know, I'm not completely anti-Pilates by any means. My feelings/opinion about Pilates is based on it's excessive use and over-generalization as a therapeutic rehabilitative method for 'any' type of condition. Emphasis on "core support" is over-done, and that often comes back to Pilates and the perported over-emphasis it places on creating hypertonic abdominals/low back muscles/ posterior pelvic muscles (gluteals and lateral rotators, and hip flexors. Yes, core support is very important, but to the excess that Pilates is often done it does in fact have its repercussions.

I say this based on personal experience working in a Pilates movement studio and having many pilates instructors come to me with the same variety of problems... Strain Psoas and iliacus muscles and other hip flexors, overtightened gluteals which has inhibited proper form and force closure of the SI joints and negatively effected pelvic mechanics. Rigid lumbar spines often accompanied by a loss of lordotic curvature.

In moderation I think it can be very useful to people in many cases. But we have to keep in mind that Joseph Pilates suffered from a congenital condition (rickets) which left him very, very unstable from a muscular stand point. His program of exercise was first and foremost designed for himself to help regain and maintain muscular stability. Most people don't start out with such severe instability and therefore need to be mindful of the consequences of too much stability = rigidity.

As for the points I mentioned about the shortening or tightening of the adductors, psaos, hip flexors and such... It is easily understood that Pilates focuses a lot of attention on these muscles and from my observation (and many other colleagues in the same and similar disciplines) these regions are often, if not always, involved in scoliotic patterns. So what I would like to emphasize here is just that we need to be very careful about how these regions are worked and it takes far more than a basic pilates training to understand the mechanics and tensegrity of that pattern in order to work with it without doing more potential harm.

I just wanted to say be cautious... And keep a watchful eye on its potential progression. I have always favored things such as yoga because not only does it strengthen the core effectively and integratively, it also promotes length and ease in the body via stretching and such. Length is a scoliotic individuals best friend so-to-speak.... Compression and limiting movement work against scoliosis. After doing Pilates myself for about 8 months, I also found it to be very isolative at times... bracing the abdominals, low back and pelvis while moving the legs.... same with the arms often... holding the shoulder blade in place while the arms move, creating excessive and compromising strain on the rotator cuff muscles. When in life do we move with such restriction and regulation???

So no, there are no studies, one way or the other to show Pilates effect or use with scoliosis.. but I would really like to see one, or two... . I do feel clinical observations are equally as relevant as studies.. both provide insight that the other cannot. Then we can make better decisions from there.

I'm glad its helped you over the years... I think one of the reasons exercise helps, regardless of its variety/name is that it is circulating blood and nutrients/oxygen to tissues that may otherwise be lacking in such. That's a simple explanation to keep this long reply short ;) .

Best Regards,
Structural

[Karen Ocker]

Thanks Structural,

Those are very good points!

[rtremb]

We need help........Esme is having trouble with her brace. The number 2 strap is hurting so badly she can't wear it. It is very tight at her waist and as a result is digging into her side. I am wondering if anyone else had this problem and had to get it adjusted? She has only been wearing the brace for 12 days. Two days ago this wasn't bothering her.
We don't go back to Montreal for the one month check up until November 28th.
Any experience or comments would be really appreciated. Thanks.
Ruth

[Celia]

Ruth,

I'm so sorry Esme is experiencing pain! I'm pretty sure this is not normal because I've never encountered anyone who has had pain or discomfort from the brace. I can't even imagine how straps would cause pain??? Perhaps her high curves are contributing to the pain :confused: Since you live so close to Montreal, I would contact the doctors ASAP.

[MATJESNIC]

Ruth,

You can start by calling Dr. Rivard. Maybe he will have a suggestion. He is usually good about returning phone calls. I am so sorry she is in pain.

[rtremb]

Celia & Melissa:

Thanks for your replies. I will call the Montreal doctors tomorrow....hope this can be fixed.

Ruth

[alabama mom]

Ruth, I am so sorry to hear that your daughter is having this problem. My daughter did have this problem with strap #2, as well. It dug into her skin, and actually caused an open wound! We got the brace in April, returned to Montreal in May, and this began happening around August. Our next appointment was set for October, but I did call Dr. Colliard about it, and got an appointment in September. She told me to use Mercuricrome, and by the way, she was on vacation when she called me back about it. Well, when we went to the appointment, and I showed this to her, she put a new, longer strap #2 on my daughter's brace. Since my daughter had grown around 2 inches and gained over 12 lbs. since the first fitting, I figure she just outgrew that strap. I know that your daughter has only had the brace for a short while, but it seems that her strap may also be too short/tight for her. I hope this helps you out, as I know how horrible it is to see her suffering from the brace. Please let me know if I can help you out in any way.
Oh...Dr. Colliard also gave us a "comfort pad" that slides on the strap. We put it right in that spot on her waist. My daughter IMMEDIATELY felt better from these adjustments. And, before I got to Montreal, I had been folding a couple of paper towels and putting them between the strap and bodysuit to help ease the pain. She said that it did help some, so you may want to try something like that, for a quick fix. Good Luck!

Nancy.

[rtremb]

Nancy:

Thank you so much for your message. I will try your suggestions.

I have emailed Dr. Rivard and Dr. Colliard tonight so hopefully we will hear from them tomorrow.

The #2 strap is very very tight so hopefully this problem can be fixed - there is room to move it along a bit but we didn't want to change the position of it without being told to by the Montreal doctors.

Ruth

[alabama mom]

Ruth, I know how you feel. I too, was afraid to move things without them seeing it, or assuring me that it was ok to. I definately feel that her strap is too tight. Hopefully, you have enough room to extend it out. We had to have a longer strap, ours was just too small. Good luck again, with it all.

Nancy.

[qiling]

Ruth,

You have already done what I would have recommended, calling and emailing the doctor. maybe the strap shrank when you washed it? Well, anyway,don't worry, symptoms are clues that help solve the problem. Esme will be fine.

Elaine

[WNCmom]

We're way too new to Spinecor to offer any advice, but I wish you luck with this, Ruth--and please let us know how it comes out. We may find ourselves in the same position one day soon.

The (minor) problem we're having with Sidney's brace is that his 1 and 4 straps come unsnapped--often during phys ed at school, but sometimes when he bends to tie his shoes or in the morning when he's just waked up and is still in bed. Occasionally it will come unsnapped in the night. He resnaps, of course, but it's annoying and a little worrisome. Our next appointment is Nov. 21. I think I'll email today Dr. Ouellette, though.

Anybody else have a problem with this?

Mary Ellen

[alabama mom]

Mary Ellen,

We have this problem alot. My daughter just keeps snapping them back on. When I mentioned it to Dr. Colliard, she actually showed my daughter that she could use the next closest snap hole, to snap it back. She also said that we could change out the snap if we needed to. Good luck!

Nancy.

[WNCmom]

Thanks, Nancy--We'll look at that option. I'm so grateful to have this forum--what would we do without it?

Mary Ellen

[qiling]

Mary Ellen
Jennifer also had #4 strap unsnapped problem, I called Dr. Deuthmen, he told me to lose the straps a little bit, but will the effect be the same? I used two safety pines instead.

Elaine

[jillw]

Nancy, when the doctor said you could use the next nearest snap hole is that because when there are snapping problems its with the base snap as opposed to the snap on the band? It would seem to me that it would be hard to switch a snap that's in the plastic (or whatever it is) pelvic girdle?

Katie's crotch snaps have occasionally come undone in bed at night so far, but not the others (yet). Of course she's only been wearing the brace 3 weeks....

[christine2]

I had a local shoesmith change a snap for us. Worked like a charm and easy to do.

[alabama mom]

Jill,

I am not sure if the problem tends to be with the snap on the band more often than the one on the base, but I just know that Dr. Colliard said to simply move it to the next closest snap on the base. I felt that this worked because it was not as worn as the other one was. My daughter still uses the first snap alot of the time, and then she might switch it to the the one that Dr. Colliard said she could use if it pops open.

We also just had to go to the shoe repairman to get a snap fixed (the one that usually pops open) today. It broke yesterday. I tied it together with some string until we could get to the shop, as I read that someone else on this forum did. So, yes, we do help eachother out alot. And, thanks to everyone for that.

Well, the shoe repairman replaced the snap on the band, and it worked out great.

Nancy.

[Celia]

This is just my experience but I found using the snap next to the faulty one created a very slight shift in posture for Deirdre. I had the faulty snaps repaired at the local shoe repair store as soon as I could.

[rtremb]

Thank you to all of you for your helpful comments about Esme's pain in her Spinecor brace. Dr. Colliard called the next morning after I emailed (amazing response time!!). She said it was okay to move the straps a little to make the brace more comfortable. We did this and while Esme is still sometimes finding it uncomforable the pain seems to be gone for the most part. It was really holding her tight on her right side.

She is going to bed and school okay in the brace but when she gets home from school she is taking it off and we are having a hard time getting her back into it. I can't say she loves it much really which is disappointing because we thought she would be okay with it especially after the hard braces.

Thanks again. Ruth

[Celia]

Oh that's great Ruth! I'm glad everything is okay. I read about your experience with the SI and the part of Esme laughing with a sheer exuberance that you haven't seen since the ortho last told her she needed surgery. :D

Has anyone heard from Cheryl? I know she was due for a followup in October. Wasn't Deshea there as well?

[desheah]

celia,

still here. our appt. is next monday. i'll probably report back on tues am since we're driving directly from montreal home. keeping my fingers crossed!

deshea

[WNCmom]

For those wondering about Spinecor and insurance--we just found out that our insurer, Assurant Health, processed the brace fitter (a chiropractor in Atlanta) as in-network and covered all but $584 of the $3800 total. When I say "covered," I mean applied to the deductable. We are self-employed and are able to afford insurance only by buying a very high deducable plan. So we still paid out of pocket, but I am encouraged by the insurance company's response.

[jillw]

I guess I should start to figure out where and who our local shoe repair shops are! This whole experience (not just spinecor but scoli in general, also) would be even more daunting if not for all the info I get from all of you!

Deshea, Lucas' follow up is on 11/12? We are going to be there that day for Katie's first (one month) follow up. Maybe we'll see you there! Our appointment is somewhere around 12:30 or 12:45 (i don't remember the exact time off hand)

[desheah]

we'll definitely see each other. our appt. is at 1p. our whole family will be there so i'm sure you'll recognize us -- lucas and ruby tend to attract attention in the small office because of their age. usually adolescent girls are there. i don't think we've ever met up with another family from this thread. that will be a nice change.

deshea

[jillw]

You'd probably recognize us too as Katie is also young (7 yrs) - just look for a family with a 7 year old and a 5 year old brother who in all liklihood will either have his head buried in game boy or will be asking every 30 seconds how many more minutes we have to wait! Oh, and look for an uptight nervous looking mom :rolleyes:

[qiling]

ruth,
I'm so happy to hear Esme is doing fine and Dr.Collard called back immediately. Jennifer having an appointment with Dr.Rivard at Nov.28. 1:00p.m.in Montreal, I hope we see you there. Thank you for Malissa. we started Spinecor with Dr.Deuthmen, now we are going for Dr.Rivard.
Elaine

[rtremb]

Elaine:
Our appointment is at 2 p.m. so maybe we will see you...that would be pretty neat to actually meet someone from the forum! We will be in the basement where they do the fitting for the brace. When we saw Dr. Rivard it was on the first floor.
There is a good cafeteria in the basement at the hospital in case you want a snack.
Ruth

[Celia]

Here are some recent Halloween pictures from last month. I also sneaked in a picture of the battle-wearied mom, weight of the world on her shoulders.... sitting by the computer frantically searching for information. :D

http://i41.photobucket.com/albums/e251/sealy25/Halloween009.jpg
http://i41.photobucket.com/albums/e251/sealy25/Halloween014.jpg
http://i41.photobucket.com/albums/e251/sealy25/Halloween008.jpg
http://i41.photobucket.com/albums/e251/sealy25/Halloween011.jpg
http://i41.photobucket.com/albums/e251/sealy25/meonasunnyday016.jpg

[MATJESNIC]

Wow, Celia, your kids have changed so much over the past two years. I love the missing teeth!!!! But that is a sure fire sign of growing up. It goes too fast from here!!! Looks like it was a lot of fun.


The picture of you could definitely have a caption on the bottom that says, "Worried about her daughter's scoliosis." Join the Worried Moms Club. It never ends.

[Celia]

She lost the top front tooth the week before Halloween and was very happy because witches normally have missing teeth. :D My son is looking more like a teenager these days. He'll be 10 in a couple of weeks....it does go so fast. The day they were both born is still very fresh in my memory.

[rosie1108]

I went to a spinecor seminar about 6 months ago with Dr. Rivard and Dr. Colliard, I can tell you they are both brilliant, and they are going to work hard to make sure your daughter gets the best care.

Are you seeing a chiropractor? It is very complementary to spinecor, you should find a DC in your are that has experience with spinecor and scoliosis.

[jillw]

Hi, I have a question for those who see Drs. Rivard/colliard...we`re in montreal and have an appointment tomorrow and i just realized we forgot that blue ID card that they gave us on our first visit. is that going to be a problem when we are going to get xrays or at any other time?

thanks! Jill

[rtremb]

Jill:

It is standard practice at Ontario hospitals to issue a card like this. You will probably just have to go to registration and get a new one.

Ruth

[Celia]

Jill and Deshea,

Good luck tomorrow!!!!! Jill if you're staying in Montreal for any length of time try to go to the Biodome, it's quite the attraction! I think Ruth is correct about getting a new card; I think they have your number on file so they'll just reissue a new card.

Quickie note on Deirdre's neck.....everything looks perfectly straight!!!! Of course the proof is in the puddin' when we do the x-rays early next year.

[arairdon]

Jill,

We needed to get a new card for some reason in September. We just went to the registration room on the 1st floor and they issued us a new one. I'm assuming it would be the same procedure if you forgot it at home. Good luck with your appointment.

Ann Rairdon

[cherylplinder]

Jill,
Praying all goes well! I know this is an especially nerve racking check up for you.
Rachel looks better to me than she did in August. I hope looks are not deceiving!
We'll find out December 6th.

[Celia]

Oh Cheryl, that's WONDERFUL to hear!!!! I was so worried when I didn't hear from you! I thought your appointment was last month and where is Gerbo hiding these days????!

Since I'm currently in a picture sharing mood :eek: Here's a picture of Mont Royal or Montreal. I think it was taken in March 2007 from our hotel room.



http://i41.photobucket.com/albums/e251/sealy25/CELIA101.jpg

[emarismom]

Cheryl,

I'm taking Emily in for her 6 month xray on December 6th also. I have been getting very nervous over he last few weeks, even though she really does "look" straighter to me. Rib hump doesn't look as pronounced either. But of course, I need the xrays to prove that I'm really seeing what I think I'm seeing.

Jill, I hope that everything goes well at your appt. today.

[WNCmom]

All you folks who see the docs in Montreal, two questions:


When you called for an appointment, how long until you could get one?

What's the typical charge for a consultation (we already have the brace)? We're in the U.S. and I understand U.S. insurers won't cover medical expenses in Canada unless it's an emergency.

Thanks.

Mary Ellen

[pat]

All you folks who see the docs in Montreal, two questions:
What's the typical charge for a consultation (we already have the brace)? We're in the U.S. and I understand U.S. insurers won't cover medical expenses in Canada unless it's an emergency.
Mary Ellen X-rays are, $325 or so, and the consult was $80., we head up next week for our recheck; it's been a little over two years in the Spinecor Brace now. p

[rtremb]

Mary Ellen:
We got our first appointment with Dr. Rivard two weeks after requesting it.
Ruth

[jillw]

Mary Ellen, we were charged $100 for the consult (maybe that's the rate for new patients and older patients are grandfathered at $80)

Celia, What hotel were you in when you took the picture of Montreal? its pretty. GREAT news that you don't see a neck curve anymore. I can't wait until you go in to have it confirmed. Actually it sounds like a bunch of people have appointments coming up in the next month or so and I will be praying that they all go well.

We had great news today. In brace, katie's curve has further reduced to 3T/4L. (yay!) thanks for your kind wishes, everybody. And thanks for the info on the Blue ID card...thanks to you we knew we'd need to get a new one so we arrived a bit early and had that taken care of to avoid delays.

We met Deshea, Lucas and family today. They are very nice people. I hope they had good news today also!

[WNCmom]

That's great news, Jill. It must feel so good to know the curve is reducing.

And thanks, everyone, for all the info about Montreal.

Mary Ellen

[stephanieC]

Wow Jill,

That is awesome news about Katie!! I am so happy for you!! You must be through the roof delighted!!

Does Katie still have to wear the brace for 20 hours a day or will she be able to cut back a bit on her hours in brace? Does the brace even bother her anymore?

I am so happy for you guys. I know you are breathing a sigh of relief. I hope you have a chance to enjoy Montreal a bit.

awesome news,
Stephanie

[rtremb]

Great news Jill. You must be so happy.
Ruth

[alabama mom]

Jill..
I am so glad to hear how great your appointment was. I hope that we all may have such good results.
Nancy.

[MATJESNIC]

Jill,

I am so happy for your good news!!!

[cherylplinder]

Jill!
I am so excited for you! That's fantastic!
Hugs!
Cheryl

[desheah]

hi everyone,

as jill already mentioned, we got to meet her family which was wonderful. katie seems like a real trooper.

our news isn't quite as wonderful, but not awful either. lucas' #s are up a bit, but then again, he grew 3 inches in the last 5 months. yikes! dr. rivard and dr. coillard believe that now it will be slow growth until 10 yrs old. perhaps we can even gain back some ground with the slower growth.

i'm beat and need to get back to work . . .

my best to everyone,
deshea

[Celia]

Jill, Amazing news!!! I'm so happy things are going well.

Deshea, You failed to mention one little detail :o :p The numbers? They went up, how much? A few degrees is nothing to worry about but 10 degrees is a different story. I hope it's the former and not the latter.

[jillw]

Deshea, 3 inches of growth in 5 months? Wow! I do seem to recall that at Lucas' age a fair amount of the growth is within the spine and then somewhere around 6 or 7 the growth of the spine slows down until the dreaded pre-adolescent growth spurt. I'm sorry his numbers went up - I hope it wasn't by too much and hopefully they will stabilize for the next several years.

I know you had a longer drive back than we did and a later appointment so you must be totally exhausted. Take care!

Everybody else, thank you for your kind thoughts! I was very happy to hear the news but am afraid to let myself feel too happy because I know we have such a long journey ahead of us and anything can happen- know what I mean?

Stephanie, Katie still needs to wear it for 20 hours a day. I don't think they reduce the time until they are weaning you from the brace (although I could be wrong). She has adjusted to wearing it quite well - although she still has her moments as to be expected...in reality she has been wearing it closer to 22-23+ hours most days because its almost easier to leave it on and since she can participate in dance class and all the other physical activities with it on. Starting in the Fall is a good time since we don't have to worry about a lot of swimming time and such. I don't know what we'll do next summer if she goes to girl scouts camp again (she can't put her brace on by herself and I'm afraid she'd lose it if she took it off while she was there)

[stephanieC]

Jill,

I am very happy for you and Katie!! Now you have to update your signature with the good news!! Those numbers are awesome.

Hugs to you,
Stephanie

[stephanieC]

Hi Jill,

Just saw your edited post. yes, I could see how the summer would add a bit of difficulty with swimming and camp and what not. I bet you will get really great advice from all the moms who have been through the summer months with spine cor. Besides all the support we get here at the forum, advice is the next best thing!!

Best,
Stephanie

[jillw]

Christine2, I was re-reading some old posts and saw your post from several months ago about trying physiotherapy and your plan to have the therapist speak to Dr. Rivard. I was just curious, whatever came of that? (both from the point of view of what Dr. Rivard had to say as well as whether she is still receiving therapy and how you think it is going?)

thanks! Jill

[stephanieC]

Hi Desheah,

I know you from the stapling forum also :)

I am sorry to hear that the numbers are up a bit for Lucas. I hope it was just the growth spurt and things will correct a bit over the coming months. Scoliosis is frustrating and at times feels so defeating, but as you know from the stories here, the children always seem to triumph!!! We just need to guide them down their best path!

You must be exhausted! I wish you a hot cup of tea, a pillow to put up your feet, and the time to enjoy the relaxing moment!!

Hugs to you and to Lucas,
Stephanie

[qiling]

Jill,
That is a great news.

Ruth,
Jennifer's appointment is Nov.22 at 3:15pm with Dr. Rivard due to Thanksgiving break in UAS that way she would not miss any class.

Mary Ellen,
I got a one month an appointment when I called,but I asked for a change so we have one on Nov.22 with D.Rivard and Nov.23 with Dr.Moreau.They very good on retuning phone calls and emails.
Dr.Morau is a molecular biologist who does the blood tests(the tests are free) to predict the risk of developing a scoliosis and the risk of curve progression as well as the monitor bracing efficacy.this tests are till in clinical validatoin do not have any treatment suggested yet.

Alain Moreau Ph.D.
Director, Molecular Genetics Laboratory of Musculoskeletal Diseases
Research Center , CHU Sainte-Justine
3175 Côte-Ste-Catherine Road,
Montréal, Qc, H3T 1C5, Canada
Phone: 514-345-4931 ext3476
Fax: 514-345-4801
Email: alain.moreau@recherche-ste-justine.qc.ca

Elaine

[desheah]

hi again,

i'm a little more with it today. ;)

hi stephanie! nice to see you here as well. i'm a bit of a scoliosis board junkie. i'm sure i need help, but hey, it keeps me sane through all of this.

so lucas' #s are 24/18 which are more similar to when he first got the brace 1 1/2 yrs ago. as i said, since he grew so much, dr. rivard and dr. coillard thought further correction will be possible now that he's (hopefully) gone through his last growth spurt before the slower 6-10 yr growth.

yes, i'm definitely disappointed whenever there is an increase in #s. looking at the actual x-rays, i can't "see" the difference between this x-ray and the last one in june -- believe me, i've lined them up pedicle by pedicle. actually, dr. coillard did the measurements last time, and dr. rivard this time. i'm wondering if it is more the interobserver error here. regardless, i've sort of been in this too long to squabble with #s. instead, i'm trying to remain upbeat and get through this. go from one appt to the next with hope, but make sure of a back up plan if necessary . . . what can you do?

one thing of interest that dr. rivard and i talked about was the possibility of new and interesting fusionless surgeries by the time that lucas is 10 and older. i guess that some of them might be discussed on the srs website, but i have macs at work and home and need to get my husband to bring home his windows laptop some night to watch them. i guess dr. rivard was in europe (paris, madrid) recently and did a surgery where they fused the "single genetically deformed" (his words) vertebrae causing the scoliosis and since he doesn't believe in rotation in the other vertebrae since it is compensatory, did not fuse those vertebrae. i believe he said there are 12 cases done so far, but hopefully, by the time lucas is older and more and more, i'm thinking he might come to the point of needing surgery (and that is okay), they will have more data on this type of surgery.

of course, i worry about long-term bracing and the effects of that, but we're okay now. it is the norm for him. at least it is the spinecor brace and not a hard brace.

okay, long winded and mostly writing out my thought processes, but hopefully it makes some sense.

my best,
deshea

[rtremb]

Hi Everyone:
For Ontario residents - attached is my letter to Spinecor asking they submit information on the Spinecor brace for consideration for inclusion in the Ontario Assistive Devices Program. Hope they do this and the brace gets approved.
Ruth

[2kids]

Hi Ruth,
Thanks for sharing the letter to SpineCorporation with us. I sure hope they send the necessary documentation to OHIP for approval. Does anyone know if this brace is covered by insurance in the USA? I have tried to read the fine print on our plan, but it looks like only hard braces (DME) are covered. It sounds like the company needs to advertise their research findings more with doctors. I asked my DD's orthopedist about it at the appointment last week, but I do not think he is familiar with this type of brace.

How much does a SpineCor brace run in Canada? I notice you go to Montreal for the appointments because you are in Ottawa. My parents are in Toronto, so I wonder if it would be worth looking into this with a doctor there.

At the suggestion of folks on this forum, I contacted the Baltimore doctor offering this option. The office manager knew nothing about it and was told to email the doctor directly. I hope I hear from him soon. I haven't a clue what this brace would cost. I heard a hard plastic brace is $4200.

Thanks!

[rtremb]

2Kids:

We paid $3,160.00 Canadian for the Spinecor brace in Montreal. This included an extra bodysuit at $60.00 which my daughter won't wear!! She wears a long thin vest with sleeves (made in Italy) and panties with it.
We don't have to pay for the x-rays or the consults with the doctors in Montreal because this is covered by a reciprocal agreement between Ontario (OHIP) and Quebec (QHIP).

Ontario Assistive Devices isn't part of OHIP it is an independent Ontario government program.

I don't think the Spinecor is available in Toronto because when we went to get Esme's brace there was a Mum there with her son who said she wasn't able to get it in Toronto and she had to travel to Montreal to get it.

Ruth

[stephanieC]

Hi 2kids,

My insurance company, Blue Cross/Blue Shield, was going to cover the spine cor brace. I am not sure how much the reimbursement would have been as I have chosen not to go with bracing but rather to do the Vertebral stapling procedure. It was not an easy decision. The only brace I would consider was the spine cor and we travelled far down the path before choosing the Stapling option. I found a few doctors who use the spine cor brace here in the USA. I had contacted my insurance company with diagnosis and codes and what not and was told there would be reimbursement.

Spine cor has come a long way in the past couple of years here in the US. I even found an ortho doc who is not a scoliosis specialist who uses the spine cor brace. She is out on Long Island, NY.

Dr Sponsellor(spelling??) In Maryland does have experience with this brace. He will contact you back. Dr Sanders, at Shriners in Erie, Pennsylvania also uses this brace.

I chose vertebral stapling because the results to date are very good and it offers young children the option of not wearing a brace for so many years of their young life. Michela is 9, she would be looking at 7 years of bracing. Not a great option for her. I researched a long time and spoke with Dr Rivard in Montreal personally, a very compassionate doctor. I had a consult with Dr. Boachie in NY, and Dr Haralabatos out on Long Island, NY. Then I met with Dr Asghar at Shriners Hospital in Philadelphia. Another kind and compassionate doctor. My husband and I, with input from my daugher, decided on the VBS.

Many doctors don't know about or trust spine cor yet. But many do. Visit the spinecorporation.com for a list of US doctors and orthotists who work with spine cor.

I wish you good luck as you research your options for your child!!

Stephanie

[jillw]

Stephanie, Would you mind telling me what the applicable codes are? I haven't submitted anything for insurance yet because I haven't gotten the codes yet (although the receipt for the brace is hand written and not what I'm used to seeing in the US; not sure how credible U.S. insurance companies will think it is)- but we use blue cross/blue shield also. Thanks!

Jill

[stephanieC]

Hi Jill,

I am sorry to say that I haven't saved that information. However, I do remember where I got it. Dr Deutchman is a chiro in NYC. He runs a spine center that uses spine cor exclusively. His office manager, a man whose name escapes me, is very nice and forth coming with information. He gave me all the info regarding how to collect from my insurance company because I don't think that office takes any insurance. I would of had to submit on my own. I do not still have there contact information. However, I know there are people on this forum who see Dr Deutchman.

The other office that I spoke with regarding insurance was an orthotists office out on Long Island, NY. This orthotist (who would have fit the spine cor brace for the pediatric ortho I was seeing out in Stony Brook)was Steve Mullins @ Mandelbaum Orthotics in Port Jefferson, NY. Phone number 631-473-8668. The woman that I spoke with was very helpful. I do remember contacting my insurance company to see if I needed to get a pre authorization for the brace. BC/BS said yes, a pre auth. is needed. The woman in this office that I spoke to said they had received payment before for the spine cor brace. The woman at BC/BS said yes they reimburse on spine cor. First get the prescription, then the pre authorization, then go ahead and have the brace fitted and submit for payment.

You may have less of a reimbursement for not getting the brace pre authorized, but I believe you will still get something. Out of network reimbursement maybe??? It's definitely worth a try.

I hope this was helpful.

Best,
Stephanie

[WNCmom]

Jill--

We have Assurant Health insurance, which covered all but $600 of a $3800 SpineCor brace. The code was L1005. The insurance company processed it as in-network because there are so (relatively) few docs who fit it, and none near me--and this was a chiropractor in Atlanta. I just submitted the bill to the insurance company myself, although Dr. Ouellette said he would help with a letter if I needed to appeal.

So yes, some companies in the U.S. do cover it.

Mary Ellen

[gallathea]

Hi Jill:

I have Harvard Pilgrim Insurance. I had to first submit a claim, get it denied, and then appeal. I think I may have been the first to ask for coverage of the Spinecor because they didn;t have a code for it. After submitting Dr. Rivard's letter as well as our own arguments, they agreed to cover it as an out-of-network expense--80%. Initially they had turned me down because my plan doesn't cover anything out-of-country. I don;t know if they would have continued to pay for future braces. They said this was a one-time only payment.

Best,
Caroline

[WNCmom]

Just want to report on Sidney's first check-up on his Spinecor brace, after 6 weeks of wearing it. There was no change in the curve (which had initially been reduced 7 degrees thoracic and about 4 degrees lumbar)--it's still T41 L31 in-brace. While we were relieved to know it had not increased, we also knew he had not grown any since he got the brace. Also, we like the brace so much (relative to the Boston, that is!) we had hoped (unrealistically, I'm sure) there would be some slight reduction.... The doc didn't expect any further reduction at this point, and told us the checkup was just to adjust the brace if necessary and make sure all was going well.

Also, Spinecor now makes a new brace part that replaces the plastic pelvic band and does away with the snaps. It's a pair of mesh shorts with velcro that can be snugged at the hips and to which the velcro tabs on the straps can be attached. We'd been having some trouble with the snaps coming undone, and were given the option of getting the shorts (we had to pay), so we went for it. Sidney seems to like it better; there is a small front velcro flap that comes undone which makes going to the bathroom easier if you're a boy. Also, it's relatively easy to pull down the shorts without having to undo the whole brace. In general, we think it's an improvement. If anything, it seems to be holding the straps more tightly than before.

Knowing that my husband's family has "tall genes" and that Sidney has always been long and tall for his age, we are aware that he has much growing left to do. At age 12, he is 5'4". I have to say I am feeling discouraged right now, wondering whether he will ever be able to make it through the growth spurts to come without the curve increasing dramatically. It definitely feels like a low spot, because most of the time we are able to be at least somewhat optomistic. Our next appointment is in 3 months.

Mary Ellen

[rtremb]

Hi Mary Ellen:

Glad to hear there has been no increase in curves although it must be somewhat disappointing there has been no decrease. We go back to Montreal this Wednesday and I am very worried what we will be told - Esme's curves have a habit of jumping up suddenly. I am hopeful the Structural Integration (Rolfing) will have been helping as well as the Spinecor.

Are you doing the Rolfing 10-series? Is there a system to what you are having done?

Ruth

[WNCmom]

Hi Ruth--

I have been very interested to hear how Esme's SI sessions have been going, and I can tell you are really encouraged.

At this point we are just doing the MFR, because we really like and have faith in this practitioner, and we live in a very rural area--I don't know if there are any Rolfers close by. We may eventually go to SI, but for now we are doing this. The doc did ask us last Wednesday at the brace checkup if Sidney was wearing a shoe lift, because his elevated hip is now just slightly lower than in the x-ray taken 6 weeks ago. He has not been wearing a shoe lift; I'm hoping it's the MFR beginning to show an effect--he's had 4 sessions so far, with another scheduled for next week.

Also, Scoliosis Rehab in WI provided me with a list of names of parents who had taken their children there, and I'm about to start gathering info on that... That's where I am. I think I'll ask the massage therapist on Wednesday her opinion on Rolfing and scoliosis. I do think she has a plan, but I feel sure it's not like Rolfing.

Thanks for posting those links on the other thread. I really appreciate all the research you are sharing. Good luck on Wednesday, and please let us know how it goes.

Mary Ellen

[Allegra]

Mary Ellen,
If you get a chance, would you mind posting a picture of these new shorts?
I'd really love to see them, as the whole pelvic belt part on my brace keeps sliding up, making it extrememly uncomfortable.

For the update, I still haven't gone back to the brace people/surgeon I saw in August and September, so I really hope it's working.
I know my spine is a lot straighter after a night of wearing it, so I'm assuming all the time in it is helping.

Has anyone heard from Gerbo lately ??

[WNCmom]

Allegra--

I'll try on the picture. I can handle a digital camera okay, but attaching a photo to a post may take some time for me! Hope you can be patient. By the way, the shorts seem to be working well for Sidney. He did complain about a "wedgie" feeling early on one day, but no compaints since! He wears underwear under the shorts, as recommended.

Mary Ellen

[Celia]

Has anyone heard from Gerbo lately ??


Yes! Last time I checked he was in the Juvenile section defending me from an angry mob (thanks Gerbo, you're a sweetie!!!) and after that he was getting into a heated discussion with Structural75 over semantics. :rolleyes: I think he's entitled to a day off :p

[Allegra]

Mary Ellen,
Take your time, there's no rush. I'mjust interested to see what i could be trying. I think I need to make a list of all my questions for our spinecor person. I'm pretty sure he put the bolero the wrong way when fitting me! Grrrr ahahaha
I think I'll start a new thread to talk about that.....

Celia,
Oh no...another debate with structural?? :eek:
oh myyy....

[structural75]

Celia,
Oh no...another debate with structural??
oh myyy....That was rather uncalled for... ???

[scolimom456]

Hi-I am just wondering if the next set of x-rays you have done would be in brace or out of brace? I don't know much about spinecor, just curious.
Thanks!

[WNCmom]

We got the brace on Oct 11, with a check-up at 6 weeks. Our next visit in 3 months will be for an in-brace x-ray. My understanding is that at the 6-month visit we will have an out-of-brace x-ray.

Mary Ellen

[txmarinemom]

Yes! Last time I checked he was in the Juvenile section defending me from an angry mob (thanks Gerbo, you're a sweetie!!!) and after that he was getting into a heated discussion with Structural75 over semantics. :rolleyes: I think he's entitled to a day off :p

Celia, dear ... would you like your edited/deleted posts that drew ire posted here? If not, I'd suggest you stop and think before you write. I've had enough of your abuse over THERE, and I WILL start repeating your words HERE.

No one is defending you for "semantics". If you feel so, I'd suggest you look up the term.

I have NEVER before been accused of being someone else, or faking AIS to annoy you (ding-ding*! - you're the winner - and the first to *ever* tell me that because I didn't agree with you). BTW, don't even bother trying to edit or delete THAT post either ...

Regards,
Pam

[gerbo]

please Pam, try to keep the personal stuff out of this thread, this is meaned to be the friendly, informative thread

thanks

[gerbo]

That was rather uncalled for... ???

well, you know, that these discussions have gained a bit of a reputation ;) ;) . In any case Structural; lets show that we do not get into these petty squabbles, we might have the occasional fall-out, but we should be able to show how to let things rest......, it just distracts from the real issues.

[mariaf]

please Pam, try to keep the personal stuff out of this thread, this is meaned to be the friendly, informative thread

thanks

Hi Gerbo,

I agree this entire forum should be a friendly, informative place - but EVERYONE, not just Pam, should be asked to follow those rules.

In her defense, Pam wasn't the one who started making it personal. I believe that was done when Celia accused Pam of being an imposter (which, to use one of Celia's terms, was IMHO "disgraceful").

Celia then went on to FALSELY accuse some of us of attacking her and her daughter, which NEVER took place. (I asked her to point out one post where her daughter was even mentioned, but I have not gotten a response.)

I think loyalty to one's friends is generally a great quality, Gerbo - but please try to see BOTH sides.

Some people don't take kindly to being verbally abused or publicly accused of faking a serious condition like scoliosis. Pam is obviously one of those folks.

Like I would tell my kids if they were arguing with each other "if you're going to dish it out, you better be able to take it". Sometimes it gets a person to stop and think before lashing out.

That being said, believe me, nobody likes all this bickering. I think it was you who said it distracts from the issues. I agree totally. I, for one, come on here to try to share my experiences and to attempt to help others who are facing decisions that I was facing a few years ago. But sometimes I'm not able to do that effectively because I have to contantly stop and defend myself, or defend my views on stapling (even though my first advice to a new parent is always to do their homework, get a consult, and not go solely by my experience alone).

I would hope that ALL of us will now try to THINK before we post. If we don't have something useful or constructive to add to a discussion, perhaps we should refrain from posting on that particular thread.

Best Regards,

[gerbo]

honestly, this is meaned to be a spinecor-thread, not a "what don't we like about each-other" thread.

[scolimom456]

We got the brace on Oct 11, with a check-up at 6 weeks. Our next visit in 3 months will be for an in-brace x-ray. My understanding is that at the 6-month visit we will have an out-of-brace x-ray.

Mary Ellen

Just quoting so that we can continue our conversation

I am just wondering why another in-brace x-ray? Would you consider asking that they do it out of brace? That is really the only measurement that matters in the end.
It seems that all of the braces can offer good correction in-brace, but then parents are sometimes disappointed by out of brace x-rays, expecting them to be better. I understand the point of inbrace x-rays when the kids are initially fit - to make sure it is working, but I can't see the point of another in-brace x-ray unless adjustments to the brace are being made.
Also, is it true that the kids should be out of brace for 48 hrs or so to get a real read of their current curve?
Thanks!

[WNCmom]

Scolimom:

Here is my understanding: they don't do an out of brace x-ray before 6 months because it really takes that long to get an idea of how the body is responding to the brace--3 months is too early. At 3 months they want to make sure the curve is not progressing (my son's curves are advanced). Apparently in Spinecor that will show in-brace.

I don't know about being out of brace for 48 hours before an out of brace x-ray--we're not there yet. I'm sure I'll find out in 3 months. I do know that my son didn't have to be out of brace for any length of time when he had a 6-mo. checkup (oob) on the Boston brace.

I think I have read on this forum that it is not required to be out of a Spinecor for 48 hours before an oob x-ray, but at least one parent has chosen to do that. Perhaps someone else can speak to that question more knowledgably.

[scolimom456]

Thank you very much for your explanation. I really appreciate it!
Best of luck!

[jillw]

For the first time since my daughter was been diagnosed with scoli in late August, I have actually spent almost a week without addictively reading the boards and any information I can get my hands on from the internet about scoliosis! :) (it took an out of town thanksgiving trip to do that). I am still catching up on the posts, but before I forget I was thinking about...

Ruth, good luck with Esme's upcoming appointment. I've been thinking of you and I hope the appointment goes great and that the 1-2 punch of spinecor/SI shows good results. Let us know how it goes.

Elaine, If I recall your daughter either just had an appointment or has one coming up within a day or two also. Good luck if you haven't gone yet! If you have, let us know how both the spinecor and blood test/genetics appointment went!

Jill

[amandap]

I don't know details about spinecor but I would think that oob x-rays would be the same regardless of what brace type you are wearing. My daughter only wore a Milwaukee brace but she had to be OOB for 48 hours prior to x-rays ~ her ortho explained that it took anywhere from 24-72 hours for the spine to go back to it's "normal" position.

I would assume that taking an OOB x-ray w/o spending time out of your brace would give you false readings.

Just my 2 cents.

Amanda

[leokatmom]

I was given this information about bracing and x rays at Scottish Rite hospital in Dallas according to the hundreds of kids they have treated and followed. Most of the kids that wear a brace even those that show a marked improvement in brace will have their curves settle back to where they originally started in brace. It may take up to 2 years to see this. Of course there are exceptions good and bad . I believe this is why the drs dont make a big deal out of how many hours out of brace before my daughter's x rays so even though she started with a 32 curve and is greatly corrected after brace wear they expect and hope that her curve will not increase past 32 when she is finally told to stop . They dont use Spinecor brace at this time . Maybe its different for that brace.

[gerbo]

the idea with the spinecor brace is that the eventual outcome is more closely reflected by the correction achieved in the brace then by the size of the original curve. The idea is that you tend to keep the "in-brace correction" after treatment has finished. This is indeed different from the thinking about outcome in hardbraces

[rtremb]

leokatmom:
It is my understanding that Dr. Rivard and Dr. Colliard do not consider the Spinecor brace a success unless it has given a reduction in curve(s). Hard bracing hopes to achieve stabilization but not reduction.
Ruth

[leokatmom]

I hope that is the case. Have they been able to follow a fairly large number of patients for some years after bracing ?

[stephanieC]

Hi All,

It was my understanding from Dr Rivard, that only after years in the brace and after the growth of the body has stopped that you will get the "real" curvature degree. However as a child grows, as they are in the spine cor brace, their spine will find a new comfort zone and grow straighter. As the child grows and is in the brace, their spine will shift and be held in a straighter position. After they are done growing and the brace comes off, they may shift a little but overall the spine should be straighter. After years of being held in a position, the spine will hold that position or something close to it. It's a theory, but it makes sense.

I wish there was someone on this forum to speak to the success of spine cor years after they were out of it.

Has anyone here had success with spine cor after reaching full growth and being out of the brace say at least two years?? I am curious about spine cors success.

Stephanie

[Celia]

Cheryl,

I noticed it's your birthday today!!!! So here goes....

HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY DEAR CHERYL
HAPPY BIRTHDAY TO YOOOOOOOOOUUUUU!! :D


Thanks for the support as always!!!


I love you!

celia

[cherylplinder]

Celia,
Thanks for the birthday wishes!
You are one of the big reasons I have made it through the past 2 years with my sanity! You are a wonderful friend!
I love you, too!

Cheryl

[cherylplinder]

Just a quick non-scoliosis related update for some who have been keeping track of other things going on in our lives.

I had a wonderful Thanksgiving with my mom, who has rapidly deteriorated with frontal lobe dementia over the past couple of years. She was very alert. She still knows everyone and everthing that is going on around her. She almost can't speak anymore, but we manage to communicate.
As rapidly as she went down last year, I didn't think we would have her this year. Some of her meds were adversely affecting her condition and when they were changed or eliminated recently, she improved. She is able to walk much better and has some energy to live again. I knew you all would be happy for me. She loved decorating for Christmas and she still indicated whether we were doing it right!
I am still not moved into that crazy house! I have looked at it as a refining fire. I have grown a lot. I had to grow to keep it from making me depressed or crazy!
Maybe by Christmas, but I won't hold my breath!

Love and Merry Christmas to all!

Cheryl

[rtremb]

You probably already know this but in case you don't - on the Spinecor website ( http://www.spinecorporation.com/English/index.htm ) there are the results of the Spinecor studies

http://www.spinecorporation.com/English/ScientificInformation/SpienCor%20System%20Overview%20-%20Jan%202007.pdf

Also some information under Scientific Studies.

Ruth

[cherylplinder]

Ruth,
Good luck at your appointment on Wednesday. Keep us posted. I understand how stressful all this is.
A big (((((((cyberhug))))))))))and lots of prayers.
Cheryl

[WNCmom]

I'll be thinking of you and Esme tomorrow, Ruth. Good luck!

Mary Ellen

[Celia]

Cheryl,

When it rains it pours! There is a safe harbour during these turbulent times that keeps us all anchored. So glad you mom is feeling better and is regaining her memory. Where are you living now?

[cherylplinder]

It pours most of the time, I think, but I always see God use it for good, and most of the time, I rest in that.

I am still in my old house in Meridian, MS. Maybe my new house will be ready soon. Like I say, I won't hold my breath, but God has used it to help me have peace in the everyday trials.
I usually have peace in the crisis because I have no control over the circumstances, it's the things in my daily control that I often don't turn over, and I have been grateful that that crazy house has helped me to turn more of my daily stresses to God.

[rtremb]

Thank you for the good wishes for our visit to Montreal tomorrow. It is nerve racking going to these doctors - you never know what you are going to find out this time and we have had some real shocker appointments!! It is snowing again tonight so I hope the roads are cleared up by the time we have to go.
Ruth

[Celia]

Good luck tomorrow Ruth. I know you have worked so hard! I really hope it's positive news. (((hugs)))

Cheryl,

I was thinking about safe harbours and came to the realization that for me, it's state of mind as I look to that inner child many years ago who believed she could accomplish anything and the world was filled with wonder and bright futures. This helps me get through times of adversity. I'm reminded of this every time I look into my daughter's face.

[qiling]

Ruth- i wish you good luck on the Nov.28th check up.

Jill-we came back from Montreal. it was a fantastic vacation for our family. dr.Rivard and Dr.coillard deserve credit for being more than a doctor. we arrived an hour early for the appointment, dr. rivard just walked out of the office,after the greeting we flowed him to the fitting room. dr. coillard was there,she gave me the direction to the administration to apply a blue card while i was reading the instructions she said "let me go with you." we followed her to the administration, payment, and x-ray without waiting. She is the most amazing doctor i ever met!

Jennifer's brace has been adjusted!! she asked "did you lose the right thigh band?" i told her that it has been like that ever since we got it :confused: . she said that the brace always had both thigh bands. then she did a lot of measurement and made lots of adjustments and add a used thigh band :mad:. Then we went to dr. rivard. he said "where did dr. deutchman put the right thigh band? i need to charge you $200 for that." :p the computer showed T23L25 in brace (the initial wasT38L20) i asked if the lumbar progressing? he said that different machines and different doctors cannot be compared. we will start from here. he talked to dr. coillard and said that Jennifer will have a great chance to avoid surgery.Our next appointment will be 03/31/08, we will enjoin the spring Montreal.

The appointment with dr. moreau was great,we stay in his office over an hour. three of us gave blood,he promised to send the blood test results as soon as they were available. he said his research is looking for a drug to treat scoliosis,the result was expected to be available in late 2008, i feel it is pretty promising.

Elaine

[cherylplinder]

Ruth,
I am thinking about you this morning. Hugs.
Cheryl

[2kids]

The appointment with dr. moreau was great,we stay in his office over an hour. three of us gave blood,he promised to send the blood test results as soon as they were available. he said his research is looking for a drug to treat scoliosis,the result was expected to be available in late 2008, i feel it is pretty promising.

Elaine

Elaine,
Glad to hear your trip to Montreal was sucessful!
In what area does Dr. Moreau specialize? Is he at the same hospital as Drs. Rivard and Coillard? What are the blood tests for?

Thanks!

[jillw]

Elaine, I know I have read that some people's lumbar curve has increased - but as you can see in my signature, my daughter's lumbar initially increased in the spinecor, but then came down after that (and hopefully will stay down!). The thoracic curve looks good! Yuck on the used thigh band. Katie's only been in spinecor for 1 1/2 months and already her thigh band is something that nobody else would want to wear! :rolleyes: It will be interesting to hear what the blood tests reveal. Do you have any other children? Did he want to take their blood?

Cheryl, Happy Belated Birthday! I'm sorry to hear about your mothers troubles but am glad that a change in medicine has improved things. Hang in there!

Jill

[WNCmom]

Elaine--

What wonderful news! It's very exciting to hear about the reduction in your daughter's curve--and thanks for the report on the Montreal docs. Are you telling us that the doc who fitted the brace only gave you one thigh band?

[cherylplinder]

Elaine,
I am so happy for your results at your last visit. That's wonderful and so encouraging!
Congratulations!

[Celia]

I have to share the funniest story that just happened to me! I was walking along the neighbourhood with my dog and I normally pack one bag for her because she normally just has one bowel movement during our walks. Like clockwork she does her business at her usual spot and I used my one and only bag. A couple of blocks later she has another bowel movement and this time it's right in front of a quaint boutique and this is substantial!!! What did she eat? :eek: Embarrassed, I open the shop door and call out to the shopkeeper "Could you please give me a plastic bag because my dog has just pooed in front of your store!" The shop keeper who was chatting with her sole customer and his back turned away so I couldn't see who he was, handed the man the plastic bag and he walked over and I immediately recognized him as the mayor of the city!!!! With a huge grin, he hands me the bag and says " I'm very happy to see you're doing your part to keep our fair city clean Miss" He called me Miss!!!! He's got my vote! The shop keeper gushes "You know it's such an honour to get a bag from this man" I laughed and said "Yes, thank you very much Mr. Miller" I bent over to pick up the poop as he watched on. I think he was observing my shapely butt and I did see a twinkle in his eye ;) I looked over embarrassed as hell poop in hand and walked on....

[qiling]

Thanks for all.

Mary Ellen- yes ,we had only one thigh band from Dr. Deuchmen .

2kids- if you check on my 2 weeks old post, you will find Dr.Moreau's information.Dr.Rivard is a member of this team also.

Jill- I have a son Christopher 16yrs old, he did not enroll in the study. Dr.Moreau mentioned about twins, but anyway he expects to have blood work down in every 6 month when Jennifer still in brace.

Ruth -- thank you for post the link 'Norther Calfornia Neurosurgery ' the doctor office is 5 minuets from my house.

Elaine

[christine2]

Hi Cheryl

I did not realize your mom was sick. My mother also has dementia. I have spent the last year trying to get a diognosis for her, thinking the worst (progressive) She has this jack*** for a primary care doc that did not pick up strokes on my mothers mri!! Finally a therapist picked it up. Thankfully her condition is non progressive. I just need to watch her blood presure and continue therapy and we will be OK for now. Her memory loss is moderate (no driving ect..) but she is happy. I just want you to know that I can relate to what you are dealing with.

[cherylplinder]

Christine,
When this all started with my mom, I thought it might be strokes, but MRI's ruled that out. Her condition is a progressive dementia, but I am so grateful that she is still with me. It's strange, we've always done a lot together, but I thought we had 20 more years of togetherness so the last several years have been extra precious to me.
I'm so glad your mom's condition is not progressive! There's nothing like your mom.
Thanks for the empathy.
Cheryl

[rtremb]

We had our appointment with Dr. Rivard and Dr. Colliard as planned and for us it was good news - Esme's curves have not progressed. She has had no progression now for three and a half months and we are very pleased with that. I know that might sound strange since we would hope for curve reduction but maintaining the curves where they are now is a huge relief to us especially since she progressed at least 10 degrees between December 06 and early August 07.

Dr. Rivard told us today that the Boston brace will not work for larger structural thoracic curves like Esme's because it won't work higher than T8 but the Spinecor can address higher than T8 because it is up around the shoulders. This was very encouraging to us.

We still hope if Esme has a growth spurt that the Spinecor will hold her where she is or perhaps even give reduction as she grows taller. I think everyone is different but her brother's curves did reduce when he suddenly grew taller.

Dr. Rivard was supportive of the Structural Integration (Rolfing)/ fascia work - especially for the management of pain. He also supported Yoga. We explained Esme did not want to do ballet as he had suggested but that she would rather do the yoga, climb trees and do her Rubik's speed cubing (best time so far 25 seconds). He was okay with that.

Ruth

[MATJESNIC]

Ruth,

I agree with you that no news is good news. I am very happy that Esme didn't progress. Please don't worry about her not doing ballet. Ballet is not going to determine whether she progresses or not. Nicole has been dancing ballet since age 3. She danced the two years that she had scoliosis. Obviously it didn't help her. Just keeping doing what you are doing. You are doing everything humanly possible to avoid surgery. Keep up the good work.

[WNCmom]

Ruth, I'm so glad to hear there's been no progression in Esme's curve. I have been thinking of you all week.

Sidney had an MFR session with the therapist (Liz) yesterday and Liz was anxious to hear the results of our brace checkup last week. When I told her there had been no progression, she said that actually was an excellent outcome, since, from her perspective, there doesn't need to be growth for a curve to progress or "collapse," as she put it. I just pass this along as a little extra validation for what you are doing.

Mary Ellen

P.S. Thanks for the info on how Spinecor works on thoracic curves.

[Sherie]

Ruth

That's good news. I think you're doing a great job. I had thought about trying out rolfing, but I had already put Sheena through so much by that time and her curves were quite advanced. I truly hope this works for Esme.

Take care

[Celia]

Ruth,

There is no quick fix to this condition and people who believe that surgery should be the first line of treatment are seriously deluding themselves. Complications from surgery even though immediately not evident but manifests later on can be pretty nasty especially when it involves the vertebrae and is so close to the spinal cord. Surgery should always be a last resort after all other treatments have been exhausted - at least that's my philosophy. I'm sure whatever you are doing is having a positive effect on Esme's curves even though the changes are not immediately evident. The news is encouraging! You're doing a great job!!!!

Did you ask dr. Rivard anything more on the fusionless surgery they are investigating in Europe?

[cherylplinder]

Ruth,
I am so happy for your good report!
I almost checked the board in the middle of the night to see if you had posted! I should have, I see you posted right after midnight!

[cherylplinder]

What happens structurally when a curve collapses as opposed to increasing because of uneven growth?

I'll be really surprised if Rachel's curve is worse at our checkup next week. She looks better to me.

[WNCmom]

Cheryl--

I'm a little hesitant to answer that question, since the term was used by a message (MFR) therapist and it's only her perspective, however, my understanding of what she was saying is that when a curve reaches a certain point and the muscles around it are stretched to the limit on the convex side and tightened up on the concave side, the muscles themselves can pull on the curve without any growth happening, and increase the angle, or, as she put it, cause additional spinal "collapse." At least part of the idea of SI and, in our case, MFR, is to break the pattern and allow the muscle to release the curve so the spine can grow straight if it wants to. Only time will tell if this will help.

Best of luck with Rachael's checkup. Please let us know how it turns out.

Mary Ellen

[rtremb]

Thank you everyone for your posts. It is really really nice to know we have your support as go through this big ordeal.

Dr. Rivard talks about spine collapse too - sounds awful!!

We had a brief discussion about traction yesterday with Dr. Rivard - he did not favour it since it could lead to weakened muscles. He said if they put Esme in traction she would have a great x-ray - maybe 35 degree curves but that it would not be good for her though.

We asked when an out of brace x-ray would be done and he said they don't like to do one until the brace has been worn for 18 months because it can discourage the patient. We go back in mid-February for another check-up unless Esme is having trouble with the brace and not wearing it then he asked we come back sooner.

Celia:
No we haven't discussed the fusionless surgery any further with Dr. Rivard.

I gave Dr. Rivard a copy of the letter to Spinecor in England (about Ontario Assistive Devices). Spinecor have responded to me by email saying a Canadian representative is going to submit the information about the brace to Assistive Devices.

Ruth

[WNCmom]

Just a question, Ruth:

Am I correct in thinking they feel okay about not doing an OOB x-ray for 18 months because if the curve progresses it will show on an in-brace x-ray? That would be particularly important in the case of Esme or my son Sidney, where curves are advanced....

Mary Ellen

[rtremb]

Yes, Dr. Rivard said that they would know if the curves are progressing - it would show on the in-brace x-ray. Sorry about that it is hard to remember everything that is said.
Ruth

[flowerpower]

Ruth,

There is no quick fix to this condition and people who believe that surgery should be the first line of treatment are seriously deluding themselves. Complications from surgery even though immediately not evident but manifests later on can be pretty nasty especially when it involves the vertebrae and is so close to the spinal cord. Surgery should always be a last resort after all other treatments have been exhausted - at least that's my philosophy. I'm sure whatever you are doing is having a positive effect on Esme's curves even though the changes are not immediately evident. The news is encouraging! You're doing a great job!!!!

Did you ask dr. Rivard anything more on the fusionless surgery they are investigating in Europe?

Celia,

There certainly is no quick, perfect, 100% forever guaranteed fix to this condition, spinecor included. Has anyone really said they believed surgery should be the first line of treatment? Please remember, there are people who have tried other methods first, including spinecor, that didn't work. Some people may have chosen surgery because other treatments weren't feasible for them. I don't think anyone who has chosen a surgical method has done so lightly so to say they are delusional in choosing a surgical approach (like VBS) first is rather mean-spirited. A while back there was a post (I think on this thread) where someone made the comment that spinecor is the only brace that can "cure" scoliosis - now that comment I find delusional as there is no cure for scoliosis, only treatment, which one hopes will hold the curve(s) and keep them from progressing. Which other treatments will you choose in the event spinecor isn't successful...hard bracing? We all know your stance on surgery, indeed it is not an attractive choice for anyone, it is one of the hardest decisions to make as a parent. So please, stop putting other people down for their choices in treatment; that is not what this forum should be about. Discussion and debate is fine, I love to hear other experiences and opinions, there is much to think about and learn. Maybe choose your words a little more carefully, show some compassion for others.

And just to be clear I am still keeping an open mind and researching all treatment options should my 9 y.o. show curve progression at next appt.

Renee

[Celia]

I belong to a support group that deals mainly with non operative treatments to scoliosis and I found out the hard way by going to the libraray that the following articles are in Polish even though the abstracts are in English SO.... one of our members who speaks Polish sent Dr. Karski an e-mail to ask if he could provide us with the English translated copies and he said YES!!!!! He did all this research, why not take advantage of it! ....Baby steps.


1: Ortop Traumatol Rehabil. 2005 Feb 28;7(1):28-35.
New conservative treatment of idiopathic scoliosis: effectiveness of therapy.
Karski T, Madej J, Rehák L, Kokavec M, Karski J, Latalski M, Ka³akucki J.
Background. This article provides basic information concerning a new conservative treatment for idiopathic scoliosis, with appropriate asymmetric flexion-rotation exercises and special redressing positions. Material and method. The analysis was based on 288 children with scoliosis and a control group of 268 children. The authors describe the most important exercises and provide a statistical analysis of treatment outcome in children with idiopathic scoliosis. Results and Conclusions. Early detection of the risk of scoliosis and correct therapy through new conservative treatment based on exercises make it possible not only to limit the progression of spinal deformity (61%), but also, in some cases of incipient scoliosis, to reduce the curvature (32%).
PMID: 17675953 [PubMed - in process]

[Celia]

Has anyone really said they believed surgery should be the first line of treatment? Renee

Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.

[flowerpower]

I meant has any parent on this forum said that they believe surgery should be the first line of treatment?

Renee

[Celia]

If parents are going to doctors who have these belief systems don't you think they'll be swayed in choosing the surgical route. Think about the BRAIST study which in effect will eliminate bracing as an option if they find bracing is ineffective which everyone knows is true in the later stages but yet....is not offered in the early stages of scoliosis. Is this what we want for our children????

[flowerpower]

There are parents who have been advised by drs. that surgery is needed yet are choosing another approach first. One good example is Ruth, it's posted in her sig. I do see your point though, how one could be swayed by one dr. opinion if they don't look elsewhere. That is why forums such as these are beneficial, you're not just hearing from a dr. you are actually hearing from other people with different experiences, different dr. approaches. Bracing is not totally ineffective; it works for a few and does have its place in at least holding/maintaining curves to maximize growth prior to surgery. However, the physical, emotional, and compliance aspects of bracing are very hard to deal with, and many take that into consideration. It appears that drs. are exploring/researching/inventing ways to treat early onset scoliosis. Deciding which choice is better; years of bracing to possibly avoid surgery or surgery to avoid years of bracing and possible surgery is really a matter of opinion and individual choice. Can't say either is right or wrong, we are all trying to make the best choices for our different situations.

Renee

[Celia]

I'm trying to think longterm and the options that will be availble for my children's children many years from now. As we all know there is a genetic link to scoliosis. I certainly hope surgery is not the only option available to my grandchildren and I pray these decisions are not made for us by doctors alone.

[flowerpower]

I totally agree with you there-

Renee

[cherylplinder]

Mary Ellen,
Thanks for your response.
My pastor was just relating to me today that he felt the massage techniques used on his son with Cerebral Palsy delayed his fusion for many years.
He said that muscle bends bone. That would be factual in Cerebral palsy.

One wonders how much it translates to AIS and Juvenile Idiopathic Scoliosis.
I want to remember to ask this time about how the fascia affects Rachel's scoliosis and if there is anything else that might help us achieve correction.

[jillw]

Cheryl, I was just looking at your signature and see Rachel last went in July...does that mean she will be going again some time in Dec or Jan?

Jill

[amandap]

Celia,

I just listened to Dr. D'Andrea (twice) @ the recent SRS meeing and not once does she that.

I welcome everyone here to listen:

http://www.istreamplanet.com/srs/default.asp?np=media&conf=7&edi=23

scroll down and click on Dr. D'Andrea's presentation.

~A

[milesmom]

QUOTE: "A while back there was a post (I think on this thread) where someone made the comment that spinecor is the only brace that can "cure" scoliosis - " END QUOTE


Lets guess who that SOMEONE was... the same person who claims that Dr. D'Andrea staples 15* curves before bracing(baloney) and that anyone whose opinions vary and hopes are high in new innovative procedures, only "wants to hear about sunny days at the lake, rainbows and butterflies...and the upside of VBS."

It as though the word stapling sends you into fits of anger. Please, stop confusing new parents about this. Share your wealth of knowledge on casting and spinecor...it is there that you offer a great service to those interested in those particular routes!

[WNCmom]

Cheryl--

Thanks for that tidbit of information from your pastor. When we began to take this road off the mainstream I told myself that if we could just delay surgery until Sidney stops growing (it hasn't been recommended yet, but the surgeon believe he is headed that way) I could count that as some measure of success. But I so hope we can avoid it altogether....every little bit of experience people share is helpful.

Mary Ellen

[cherylplinder]

Jill,

Rachel goes again next week. I am praying for good results.

Rachel was diagnosed, like your Katie, at about 7 with approximately a 18/17 curve or very close to that. Our MD told me she was not a candidate for bracing. I asked about bracing her at her first visit. He said the hard braces weaken the trunk muscles and were not used in curves under 25 degrees. He did not even know Spinecor existed. Three years later, at 10 years of age, her curves were 38/27. She was 10 years old and I was told by Shriners (A different ortho than the first mentioned) that since she had not even begun her adolescent growth spurt, she had a 100 % chance of progressing to surgery. So far we are beating the odds!

I wish I had know Spinecor existed three years ago, when her curves were small like Katie's. I found Spinecor own my own when the Boston brace did not correct her curve even 1 degree. I told him about the Spinecor, and he said to send him some information, but he was not really interested. The other option offered to us was the Milwaukee.

But maybe our experiences will help many others. I hope so!

Your results with Katie warm and fill my heart with gratitude. Every child corrected fills me with joy!

[mariaf]

Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.

That statement is totally inaccurate. In addition to, as Amanda suggested, listening to Dr. D'Andrea's entire speech, I invite everyone to visit the vertebral stapling support site (see the link below) and read about kids who are NOT candidates at this time because their curves are too small (18, 19, etc.). You will hear firsthand accounts from their PARENTS.

In fact, one 11 year old male patient, had gone for a consult with Dr. D'Andrea a year or two ago - his curve at that time was I believe ABOUT 21 degrees and he had just started bracing. He strongly WANTED the stapling because he hated the brace but Dr. D'Andrea refused because the curve was only 21. She told him to stick with the bracing (it had been prescribed 16 or 18 hours I believe) and she'd monitor him. If you like, I will contact his mother and ask her to post (she's also a member of our VBS support group so the boy's story is there to read along with others I refer to above who were told that a curve of 18 or 19 degrees would NOT qualify for stapling).

Once again, I have no desire to get into a "debate" but I can't sit by while totally fabricated information is posted. It's just not fair to parents.

Celia - For some reason you can't bring yourself to speak the truth when it comes to stapling, so please FOR ALL THE PARENTS YOU ARE DOING A DISSERVICE TO, refrain from posting on the subject. I can't understand why you keep brining it up, even on the Spinecor thread!

(One good thing has come out of all this - you actually have helped PUBLICIZE the stapling and at least one parent said that our discussions here helped her make the decision to look into it, and to ultimately go ahead with it after going to Shriners for a consult).

If it's necessary in order to put all of this to rest once and for all, I will gladly contact Dr. D'Andrea (or a doctor at Shriners - or perhaps even Janet Cerrone) and have them come on here to explain how children are accepted or rejected for the stapling and to post that NO 15 DEGREE CURVE WAS EVER - OR WILL EVER - BE STAPLED.

But I doubt even that would stop you from posting inaccuracies.

If anyone is interested in accurate information, here's the link I referred to above:

http://health.groups.yahoo.com/group/staplingsupport/

[Celia]

I wish you would stop advertising your vertebral stapling support site every chance you get! If you don't believe that dr. D'Andrea did in fact make that statement, listen to the SRS webcast yourself! Asked by Dr. Dormans if a case presented itself where the scoliosis was expected to progress and this child presented with a 15 degree curve would she staple the curve???? The answer was an overwhelming....YES!

42nd Annual Meeting
Pre-Course
10:05am Discussion play4
http://www.istreamplanet.com/srs/default.asp?np=media&conf=7&edi=23

[mariaf]

Celia,

Why on earth would it bother you that folks find out about a support site full of parents who've actually had EXPERIENCE with the stapling? Or that they can hear from parents whose kids are 2, 4 or 6 years post-op????

Why does that sharing of firsthand information and experiences bother you so?

Hmmmm............

I wonder.

Perhaps it's because you'd rather they just believe anything you say, having NO actual experience with stapling.

Luckily, I find that parents are MUCH too smart to fall for that.

[Celia]

Excuse me! You and Amanda just accused me of being a liar! Let's not try to confuse by quickly changing the subject! Did you listen to the presentation?? Case closed!

[stephanieC]

OMG Celia....

VBS is a fantastic option to bracing. If parents don't look into it, they are doing a huge disservice to their child!!

IF YOU wish to speak as if you actually know what you are talking about, at least have a consult with Dr Betz. What you are stating is made up in your mind!!

Stephanie

[milesmom]

Below is an ACTUAL quote, as said by Dr. D'Andrea.


Linda D'Andrea, M.D. (in regards to stapling)
"Her 20 degree thoracic curve has now decreased to 11 degrees, and her 25 degree lumbar curve is now 15 degrees." ( after the VBS procedure)

"If she came IN with 11 and 15 degrees, I probably wouldn't even brace her."

So, what does that mean?

What she is actually stating was that she would NOT staple an 11, or 15 degree curve...and that she "wouldnt even brace her" with such small curves.

WHAT SHE DID NOT SAY IS THAT SHE WOULD STAPLE A 15 DEGREE CURVE.

Celia, I did my best to compliment you on your knowledge of spinecor and serial casting, but I must agree with the other ladies that you are not only misleading parents...you are being destructive with your half studied, half witted attempts to appear informed on VBS. Do you also hand out fake information to others say, weighing heart surgeries or lung transplants on other SUPPORT forums? Do you gain enjoyment out of this phasad that you are well versed, and have experience with VBS?
You do however have a great deal of experience with BS.
You could really be damaging to a child's future should their parent/s read your misinformation and base their decision upon it.

[stephanieC]

celia,

1. You do not actually understand the articles you read or the conferences you watch.
2. It was not Dr Dormans who asked Dr D'Andrea that question, It was Bob Campbell.
3. The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS? Her answer was not an "overwhelming" yes, as you stated but rather a thoughtful and well considered yes. Dr D'Andrea stated that if she could assume that the patient was very young with at least two years of growth left and this 97% PROVEN liklihood of progression, then yes, she would do the stapling. This makes perfect sense to me!!

Again and again you show to have an over the top negative response to surgery, Why? Pediatric surgery here in the US is proven statistically predominently safe. Is that not so in Canada??

VBS is not ordinarily done on children with curves lower then mid twenties. I can not say that there aren't certain situations... I just don't know, I only know that this is not the norm.

Would a child be put into a brace with curves less then 20 degrees??? Why.... how do you know that curve will progress?? Then, once in that brace if the child never progresses, are they doomed to spend the next 6-8 years of their life in that brace??

These questions are difficult to answer.

Stephanie

[structural75]

WNCmom,
Sorry to interrupt here, but I couldn't send this lengthy message privately to WNCmom (too long), so I'll have to interject amongst you're discussion... don't mind me.

...when a curve reaches a certain point and the muscles around it are stretched to the limit on the convex side and tightened up on the concave side, the muscles themselves can pull on the curve without any growth happening, and increase the angle, or, as she put it, cause additional spinal "collapse." At least part of the idea of SI and, in our case, MFR, is to break the pattern and allow the muscle to release the curve so the spine can grow straight if it wants to.The concept of spinal collapse occurs when the system (soft tissue including muscles, ligaments, articular tissues, ...fascia, etc.) can no longer provide sustainable support to the deformation of the skeletal system... in this case specifically the spinal curvature. Ultimately, gravity wins the battle... the forces imposed on the tissues from the weight of the body segments, angulations and so forth are far too great for the tissues to resist and collapse occurs.

As far as tissues themselves ("muscles") pulling the curve further... That's typically not the case unless there is an underlaying neurologic deficit/component to the cause of the scoliosis. The muscles on the concave/shortened side actually become inhibited, as demonstrated by EMG testings, ... But the fascia that comprises the shape and 3-dimensional form and structure of what we call 'muscles' actually shortens to the resting length determined by the position of the spine. It is the inelastic collagen fibers of the fascia (which constitutes what we call a 'muscle' along with the cellular muscle fibers) that restrict the spine from lengthening out of the concavity. And it is gravity that continues to force the curvature further into its progression. As long as a curve in the spine is present, there will always exist the possibility for progression due to gravitational forces...

It is ultimately the tenacity of the 'cause' of the scoliosis combined with the adaptability, strength and resiliency of the individuals system that will determine whether it progresses and/or how fast. In ideopathic cases, bony deformity follows the progression, rather than dictating it. But once deformation happens, it takes more sustained efforts to reverse the process, ...so you will generally see a greater likelyhood of progression if left unattended.

The goal, in part, of SI is to provide the openings (freeing of those restrictions) so that the body can ultimately orient to gravity more efficiently... which it inherently wants to do as we see with children when they learn to walk and so forth. Working in the proper places will allow for this potential change to happen... working on the fascia in the 'wrong' places will send a scoliosis spiraling into further progression.

structural

[amandap]

Stephanie,

You ROCK ~ girlfriend ~ THANK YOU!!!!!

Adele I believe this is the article you are quoting from ~ and oh my you were 100% on your info ~ go figure. http://www.wchstv.com/newsroom/healthyforlife/2082.shtml

[amandap]

I don't want to edit ~ but I hit the wrong key.

Stephanie thank you for clarifying what Dr. D'Andrea actually said and Celia once again you don't have a clue what you are talking about so STOP! I really wish there was a moderator here that would ban you from posting anything PERIOD! Now I'm wondering how much of a benefit you really are. Since I know very little about spinecor or casting I've always trused what you say as true and most importantly accurate information but I've just realized if you are THAT delusional and misinformed about VBS you must be that way about spinecor and casting as well.

Exactly what type of person does what you are doing to so many vulnerable parents? Why so much anger? Why so much hatred? You truly are a very hateful person to contiue what you are doing.

For everyone reading this ~ Celia is the ONLY reason Maria and I started the VBS support group site because it was IMPOSSIBLE to carry on a real supportive and helpful conversation. Our group started on 9/10 and we already have 51 members and I can honestly say there has NEVER EVER been this type of childish arguing and bickering. We are all there to support and answer questions to the best of our knowledge and experience. The majoriy of these people are afraid to even post on this site.

Celia you must be proud running off so many people, but rest assured Maria, Stephanie and I are not going anywhere we will be here day in and day out making sure people are aware that you have no credibility whatsoever with anything scoliosis related. Thank you for making that FACT more obvious to everyone.

~A

[milesmom]

Yes, that was the article, interestingly regarding the same topic and numbers. It would be rather odd that Dr D'Andrea would have such different opinions on such similar situations. She is not in the business of doublespeak.

I just want to express my gratitiude to Amanda and Maria for running a site that yes, is calm, collected and does what its put in place to do. You have been the salvation for many worried, sleepless parents and offer sound experience. I am proud to be a part of th e forum, and the many good things which come of it. What a family!

I appreciate that this site is in place as well, but saddened that just about every time I come here for discussion and support, I end up feeling more like I need to defend certain perspectives. ( kinda takes everything away from the words 'open' and 'forum'...)

Should any more parents decide to come to the Yahoo VBS SUPPORT forum (as a great number already have) I will suggest to run, not walk...right on over to this less combative setting. The info here, regarding VBS by Mz. Vogel...is simply muddled and misinforming.

[Celia]

... The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS?


Well guess what???!!! With 20/20 hindsight my daughter's chance of progression was 100%! I am thankful and grateful that I had alternatives besides surgery and I certainly hope this holds true for future generations because the way things look right now with the BRAIST study underway, people travelling huge distances to get the Spinecor brace because only a handful of orthopaedic doctors carry it and the rest feign ignorance about it's very existence, people complaining they just can't live with braces or that casting is barbaric (yet it works!!!!) etc. etc....our grandchildren won't have any other choice but surgery. Is this what we want?

Milesmom,

I was having a discussion with Renne before Maria et al. decided to join in. This is a non surgical thread so in the spirit of non surgical treatments I think we should keep the discussion on bracing and not vertebral stapling.

[cherylplinder]

I listened to the tape.
The question to Dr. Andrea was this:
We feel we will soon have the capability to predict which curves will progress with genetic testing. If a young child (a lot of growth left)came in with a 15 degree curve and a positive genetic test, would you perform stapling. Her answer was "Yes."

Why did you call Celia a liar? That is exactly what she answered.

Celia's point, and she should not be crucified for making it, is that there is a viable alternative to this surgery that provides actual correction, i.e. the Spinecor.

Obviously it is up to each parent to decide which option to choose, and I might even choose stapling for Rachel if she progresses in the Spinecor, but parents should know that there is an alternative to VBS that provides permanent correction in many patients and may prevent progression and fusion.

You all are very pro stapling. I understand that. It is the option you have chosen. It is a personal choice.

But why do you so vehemently oppose any mention of Spinecor bracing as an alternative to VBS?

I think Celia passionately feels that each parent should be educated on ALL their alternatives or she would not continue to state these facts. I have NEVER seen a lack of integrity in Celia. I read MANY of her posts.

I think it is time to stop these vehement attacks every time she mentions that there is an alternative to VBS.

I feel no animosity or condemnation for anyone on these forums. You are all parents doing the best for your children that you can and supporting one another.

Celia is a valuable and wonderful member of our forum and this seems like a vendeta against her. This is a Spinecor thread. You all are interrupting my converstion with your attack. Do you read everything Celia posts everywhere?

Lets allow everyone to speak their opinions without attacking them.

I think that is all she is trying to do is provide a balance of information. And information is just that........information.

[gerbo]

this was a factual and polite discussion up till post 2459 and just an exchange of information and views without any attempt to scare or bully anybody into any particular position. This changed with post 2460 and 2461 and further posts which became very personal for no reason but the strong feelings people have about this subject, and the strong personal feelings some people have developped against one particular member, from there it went inevitably downhill once again.

Please "staple-mums", you are genuinly doing a good job in providing information about what appears a exciting treatment possibility, but try to stick to a factual exchange of information without the personal bits thrown in.

we all can get a bit worked up at times, and dealing with a child with scoliosis is ever so hard and stressful, but let's direct our frustation, anger and energy at fighting the common enemy (scoliosis) and not each other.

[stephanieC]

[QUOTE=Celia Vogel]Well guess what???!!! With 20/20 hindsight my daughter's chance of progression was 100%! I am thankful and grateful that I had alternatives besides surgery and I certainly hope this holds true for future generations because the way things look right now with the BRAIST study underway, people travelling huge distances to get the Spinecor brace because only a handful of orthopaedic doctors carry it and the rest feign ignorance about it's very existence, people complaining they just can't live with braces or that casting is barbaric (yet it works!!!!) etc. etc....our grandchildren won't have any other choice but surgery. Is this what we want?

Celia,

Most of us do not have 20/20 hindsight yet. 20/20 is great when your child is in the success column. What does the mother of the child with 20/20 hindsight feel after casting or spine cor or VBS has failed for her!! 20/20 is only reassuring when it has worked for you!!

If casting works and spinecor works and VBS works and rolfing works, some people feel vestibular testing and treatment works...great, each person does their research and chooses the treatment that sits best with them. That is how it should be.

There will always be choices because even the doctors can't (and shouldn't) agree on one treatment. Spine cor and VBS do the same thing, work with the same principle. It is the philosophy of the internal brace vs the external brace. Only time will tell if one is "better" then the other. Both have success and both have failures. That doesn't mean too much. Scoliosis is different for each person who has it!! The genetic testing may lead us down the best path...prevention. Moms who have chosen VBS and moms who have chosen spine cor and moms and all people who have an interest in scoliosis, will agree....prevention would be best.

Spine cor is an excellent brace. I researched it long and hard myself. I contacted doctor Rivard and had a very lengthy discussion with him. It's a great option that may offer a chance to correct the curve. I simply chose a different great option.

I think it is obvious that you and I do not have the same parental philosophy!! You see surgery as a "last resort", I see this surgery as a proactive choice that I believe gives my daughter the best opportunity for a successful outcome!! I do not hold the same fear and anxiety about surgery as you do. I do not think surgery should be taken lightly by any means but many, many great things come out of surgery.

It is the way you mix truthful statements with negative opinion, and shift and manipulate little items, and imply little things and use sarcastic humor and whatnot, that stirs such angry responses. Wrong or right you 100% contribute to the "ugly" on the forum.

This thread is not the place for this discussion. Someone just said that. That is correct. I understand that this thread is a spinecor support thread. I will respect that and make this my last post here.

I only ask that when there is a support thread going for VBS could it be just that too, a support thread, a place to gain some insight into VBS and learn about the children, their stories, the doctors, and where to go for help or a consult. Maria keeps inserting the site of the stapling support group because she wants new parents to know there is a "safe " place to go for information, where you won't be attacked for asking. However, parents should be allowed to ask and receive information here on the NSF as well!!!

Stephanie

[stephanieC]

Sorry, in my last post I tried to quote. I obviously don't know how to do the quote thing right! :eek:

Stephanie

[Celia]

Yes, where parents can hear the same sales pitch "to run, don't walk" to the Shriner's in PA and get a consult with Dr. Betz and call Janet before it's too late! Your child may not be a candidate! Time is running out on this limited time offer! So Hurry! Precious time is wasting!

The moderators at the vertebral stapling site should also add to the above sales pitch:

Operators are standing by to take your call and if you call Janet right NOW to make an appointment with dr. Betz... a lovely fruit basket with a decorative floral arrangement will be sent to you as our thanks!

[Celia]

Cheryl,

I'm glad to know I'm not the only one whose hearing and comprehension is still intact when it comes to listening to SRS webcasts! Thanks!

[amandap]

Cheryl,

I called her a liar because she is. Celia's answer was
Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.

Which was a complete lie ~ the questions posed was a hypothetical question involvoing genetic testing (which is still not a viable option) Celia's post would lead people to believe that Dr. D'Andrea would staple a child who came in with 15* automatically and that is not the case. It was not an OVERWHELMING yes like Celia stated.

She takes what she reads and hears and turns it around to sound like something it is not, therfore misinforming people.

Celia yes ~ this spincor thread is about bracing and you were the one who brought VBS into the discussin with false information so of couse we have to jump in and correct your ignorance. You really should just stop mentioning VBS altogether!

Amanda

[WNCmom]

QUOTE: "The concept of spinal collapse occurs when the system (soft tissue including muscles, ligaments, articular tissues, ...fascia, etc.) can no longer provide sustainable support to the deformation of the skeletal system... in this case specifically the spinal curvature. Ultimately, gravity wins the battle... the forces imposed on the tissues from the weight of the body segments, angulations and so forth are far too great for the tissues to resist and collapse occurs.

As far as tissues themselves ("muscles") pulling the curve further... That's typically not the case unless there is an underlaying neurologic deficit/component to the cause of the scoliosis. The muscles on the concave/shortened side actually become inhibited, as demonstrated by EMG testings, ... But the fascia that comprises the shape and 3-dimensional form and structure of what we call 'muscles' actually shortens to the resting length determined by the position of the spine. It is the inelastic collagen fibers of the fascia (which constitutes what we call a 'muscle' along with the cellular muscle fibers) that restrict the spine from lengthening out of the concavity. And it is gravity that continues to force the curvature further into its progression. As long as a curve in the spine is present, there will always exist the possibility for progression due to gravitational forces...

It is ultimately the tenacity of the 'cause' of the scoliosis combined with the adaptability, strength and resiliency of the individuals system that will determine whether it progresses and/or how fast. In ideopathic cases, bony deformity follows the progression, rather than dictating it. But once deformation happens, it takes more sustained efforts to reverse the process, ...so you will generally see a greater likelyhood of progression if left unattended.

The goal, in part, of SI is to provide the openings (freeing of those restrictions) so that the body can ultimately orient to gravity more efficiently... which it inherently wants to do as we see with children when they learn to walk and so forth. Working in the proper places will allow for this potential change to happen... working on the fascia in the 'wrong' places will send a scoliosis spiraling into further progression."

Structural:

Thanks so much for the above clarification. I knew I wasn't representing it quite correctly, and I appreciate your outlining the fine points so I can understand them. One question: I've heard a lot about forces of gravity on the spine. I'm not clear on exactly what that means--does it go beyond the inelastic collagen fibres of the fascia? Can you/would you elaborate?


Mary Ellen

[amandap]

Celia,

You truly are delusional. I wish I had some time to actually transcribe the question/answer.

Amanda

[gerbo]

I've heard a lot about forces of gravity on the spine

this is literally just the force of somebody's weight, creating a downward pull on the spine, which a completely straight spine can stand, but an already bend spine will struggle with it, and be more inclined to "give"

[amandap]

Gerbo,


this was a factual and polite discussion up till post 2459 and just an exchange of information and views without any attempt to scare or bully anybody into any particular position.

How can you say this was a factual discussion it was NOT!

Celia purposely misinformed flowerpower by answering the way she did ~ Celia flat out LIED and I'm tired of her BS I've been very polite and have tried to hold off but this is absolutely RIDICULOUS ~ how can you defend her?

Dr. D'Andrea never said that surgery was her first line of treatment!

I will say it again ~ Celia is a liar and there was nothing "FACTUAL" about her discussion prior to my post ~ the only thing "FACTUAL" about Celia is that she is certifiablly NUTS!!!!!!!!

We "stapling mums" would love to stick to factual bits of info if Celia would quit giving out bogus info that we have to clarify.

Since you seem to her "friend" please shed some light as to why she continues this huge injustice.

Amanda

[mariaf]

I was having a discussion with Renne before Maria et al. decided to join in. This is a non surgical thread so in the spirit of non surgical treatments I think we should keep the discussion on bracing and not vertebral stapling.

Celia,

Excuse me, but I didn't think I needed your permission to join the discussion - YOU do that all the time.

And please go back and read the posts - it was YOU who brought stapling into the conversation on the Spinecor thread, not me.

[mariaf]

Well guess what???!!! I am thankful and grateful that I had alternatives besides surgery...

That's my point - if YOU choose to keep YOUR daughter in the Spinecor brace for the next 8 or 9 years that is YOUR decision. It's not for someone else to judge or criticize or say "gee, Spinecor isn't proven" or "it's too new" or "the majority of orthos done believe that it's a viable option: or "several kids have gone on to fusion from the Spinecor". That's irrelevant - it is YOUR decision to make.

[mariaf]

The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS? Her answer was not an "overwhelming" yes, as you stated but rather a thoughtful and well considered yes. Dr D'Andrea stated that if she could assume that the patient was very young with at least two years of growth left and this 97% PROVEN liklihood of progression, then yes, she would do the stapling. This makes perfect sense to me!!


Hi Stephanie,

Yes, that IS quite different from what Celia posted originally, isn't it? She seems to have NO understanding of the articles she is attempting to interpret for the entire forum. I'm actually glad she is urging folks to listen for themselves.

I guess we should not be shocked that she took a sentence or two from an 18 minute tape and presented it out of context so that she could bring stapling up YET again.

take care,

[WNCmom]

this is literally just the force of somebody's weight, creating a downward pull on the spine, which a completely straight spine can stand, but an already bend spine will struggle with it, and be more inclined to "give"


Gerbo:

So given this definition, intense physical therapy methods like Schroth relieve the force of gravity from the spine by/during the actual exercise, and that's one way the method works? Or does it rebalance the gravity load (during the exercise or as a result of strengthened or retrained muscles)? I've heard gravity spoken of several times in discussions of Schroth. One would guess that a spinecor brace is attempting to rebalance the load and retrain muscles. Just trying to wrap my brain around what all this means.....

Mary Ellen

[milesmom]

The moderators at the vertebral stapling site should also add to the above sales pitch:

operators are standing by to take your call and if you call Janet right now to make an appointment with dr. Betz a lovely fruit basket with a decorative floral arrangement will be sent to you as our thanks!


How kind, and relevant to anything regarding treatment options for our children. There you go, Celia supporters...more ugly, sarcastic, sour, unrelated drivvel in place of adult, reasonable, factual discussion, when debated. Beside the above quote missing any scrap of intelligence or substance, Im a tad surprised at the lack of emoticons used to fill in dead space as usual.

Your afterthought was correct though, Celia. The original discussion was on spinecor. No one jumped in and brought up VBS "quotes" other than yourself, and the info was yet another mash up of words, again misleading readers.

There are no "stapling mums"....."casting mums"....or "spinecor mums"...we are all however, "children with scoliosis mums" and must simply offer one another relevant, researched information and advice from personal experience. Statements like the above quote is EXACTLY what sparks angry retorts. What goes ON in the brain of one who attempts to make a joke out of the mention of another support forum?.. which I indeed maintain--includes none of this nonesense. For shame.

[mariaf]

Celia,

What on earth is wrong with you? NOBODY else on this forum acts so childish and irrational.

You know what they say about comedians who have to use vulgar language to get laughs - that they are not talented enough to entertain an audience with their wit.

That seems to clearly be the case here - you can't make your case against stapling logically and rationally so you resort to stuff like this which makes you sound like a total nut case.

[gerbo]

I think "Mum of Miles" (hopefully our children will never read these posts, now or in the future, as it gives a very bad impression of "adult" behaviour), i think that once the tone is set and the attack is launched (as happened in post 2460) and other "mothers with great knowledge and passion about stapling" join, things go pear-shaped and downhills very easily, and it becomes very difficult not to retort to very serious and un-warranted personal attacks with a degree of sarcasm, however unwise this might be.

dad of lisanna

[mariaf]

OK, getting back to what sparked all of this (not that I want to continue this "debate" but the following is something I think parents should read because it SPEAKS VOLUMES).

I just copied this from the VBS support site. Laura is the mom of that 11-year old male patient of Dr. D'Andrea that I spoke of:


"Maria,

You are absolutely correct! We saw Dr. D'Andrea and Brian's curve had gone from 25 degrees to 23, she said that it seemed that the brace was correcting and that if it was her child she would NOT perform surgery. She even explained to Brian that it was not a minor surgery and that if they could aviod it and keep the correction by bracing they would. She came to an agreement with him to only wear it at night. We went back 1 1/2 years later when he increased to 28 degree. We actually wanted the surgery and were really upset she felt so strongly about not doing it.
I am not the only one with a good memory!

Laura
Mom to Brian Age 12
Braced 2+ years
VBS performed on Sept. 24,2007 by Dr. Asghar Shriner's Philly
curve 30*/15* pre-op
post-op 6*/not measurable"


Does that sound like Dr. D'Andrea would EVER staple a 15 degree curve?

I'm talking about in reality - NOT when the question is posed hypothetically and in futuristic terms where she would absolutely know FOR SURE (97%) that a curve would progress. As Stephanie posted, under those conditions it WOULD make sense, but that is not what she was "misquoted" as saying.

By the way, please note Brian's FANTASTIC results. (sorry if that bothers you Celia, but we are all very happy for the boy).

[gerbo]

Gerbo:

So given this definition, intense physical therapy methods like Schroth relieve the force of gravity from the spine by/during the actual exercise, and that's one way the method works? Or does it rebalance the gravity load (during the exercise or as a result of strengthened or retrained muscles)? I've heard gravity spoken of several times in discussions of Schroth. One would guess that a spinecor brace is attempting to rebalance the load and retrain muscles. Just trying to wrap my brain around what all this means.....

Mary Ellen

first of all, although Schroth has many followers, the actual evidence that it "works" seems very limited (hasten to add, would seriously consider trying as not much better available), as evidence for most methods is ever so limited (like osteopathy, SI and even re our beloved Spinecor)

What I gather is that there are so many factors to take into account, but gravity on an unnatural upright spine (spine isn't designed to be upright, apparantly there is no scoliosis in mammals walking on 4 legs), really makes it all worse and isn't our friend.

Whatever causes the initial curve, I think it is commonly agreed that in many cases a vicious cycle sets into motion, where many factors contribute to an near inevitable worsening, this include assymetrical bone growth, assymetrical muscle action/ tension, changing movement patterns, and ofcourse progressive changes in various ligaments, and all of this exacerbated by the force of gravity pulling on the spine.

This then would mean that what you do in the way of treatment needs to be aimed at one or more of these factors to have a chance to be succesful, i.e. keep the spine as straight as possible (brACING/ POSTURE) to keep the assymmetrical pressure off the growth plates, and stop ligaments etc contracting assymmetrically, exercises to prevent or deal with abnormal/ assymmetrical muscle action and exercises to improve posture, all with the aim to try to keep the spine as straight as possible for all these factors to have as little influence as possible. Spinecor is meaned to do various things, i.e counterbending and twisting the spine in such a way that it is straighter, but also it is meaned to encourage a more natural movement pattern and help in that way.

I am sure structural will either correct me or give further detail, I think we agree broadly though

[milesmom]

I think "Mum of Miles" (hopefully our children will never read these posts, now or in the future, as it gives a very bad impression of "adult" behaviour), i think that once the tone is set and the attack is launched (as happened in post 2460) and other "mothers with great knowledge and passion about stapling" join, things go pear-shaped and downhills very easily, and it becomes very difficult not to retort to very serious and un-warranted personal attacks with a degree of sarcasm, however unwise this might be.

dad of lisanna

Agreed. But, the original commentaries make the rest of the posts defeating to what this is all about. To debate the validity of a statement, in honor of providing accurate info ( we DO all agree that we want the info on the forum to BE accurate, correct? Yes.) is one issue.

To purposely stray from the subject at hand and move into odd speak referencing "sunny days at lakes".... "only seeing the upside of VBS"...and lastly, " selling Shriners for free gifts"...is simply an adult who is not able to control their behaviour, and feels ok with shifting into that cruel downward spiral. Yes, some of the moms get heated, but if you look back it is ALL in reference to the SUBJECT AT HAND...I see no other speak of fairies, unicorns and useless oddities like that from them. Good grief, Celia is an *adult*...surley if she felt so horribly victimized she'd leave the discussion, but no she forges ahead with sly confronation.

Personally, my child would never see recounts of this, and I've not had experience with such behaviours with friends, family, or my other support group. Agreed, it is shameful, and either way, Miles is 2...and already well above some of the demeanors I see here.

The bottom line is that we wish that Celia would just stop bashing and misinforming, on some desperate quest to constantly feel "right". I do not see where anyone else has done so. Then, the subject matters could return to what they should be.

[gerbo]

By the way, please note Brian's FANTASTIC results. (sorry if that bothers you Celia, but we are all very happy for the boy).

i think there is an element here of putting "words in mouth", which doesn't help a rational discussion, and again, making critical remarks (which i would do myself re spinecor) does not equate to being against a method. (i do not think celia has argued against stapling, just has different opinions about its place in the therapeutic arsenal)

saying that; the mentioned result is fascinating; how is this explained? I can understand that growth inhibition by a staple on one side of a vertebra can have an effect in the long term, but how does one explain such a sudden improvement, what is actually done to the spine duringthe surgery for it to straighten out so much? This cannot be explained by the direct effect of the staple, or can it?

[mariaf]

Gerbo,

In watching the SRS presentation, I did see it mentioned that with regard to stapling, the best results occur when good correction is achieved on the operating table. This seems to hold true with regard to the dozens and dozens of parents I've spoken to as well.

I am not able to explain it adequately in medical terms, but the spine is gently moved into position and then the staple is inserted. The theory is twofold: (1) to achieve some initial correction right then and there; and (2) to achieve additional possible correction as the child grows and the growth on the one side of the vertebrae is inhibited.

One of our VBS members (in fact she's the longest out of surgery - nearly 6 years post-op) said that Dr. Betz told her at first the goal of the VBS, as with bracing, was mainly to hold or maintain the curve. The correction has just been, as we say "gravy".

I wish I could explain what happens in the OR in more technical, medical terms. Maybe Amanda, Stephanie or someone else has had it explained to them by Dr. Betz or Dr. Ashgar. I know that Stephanie spoke AT LENGTH to Dr. Ashgar about the procedure recently.

[mariaf]

I found another e-mail from the parent of one of Dr. D'Andrea's patients (actually BOTH of her kids are currently being braced by Dr. D):

(I took the first names out and just inserted "my son" and "my daughter" instead to protect privacy).

Here's the e-mail:

"[My daughter] is 8 years old. Dr. D'Andrea was great. I absolutely loved the way she handled the kids and our questions. She would like us to wait as far as surgery goes on both children ([our son] is 13 with a 27 degree curve up top).

What she said made a lot of sense. I have scoli, my mom had scoli and my
sister also has scoli. None of us ever needed surgery. Dr. D'Andrea said
it is quite possible that our childrens curve may never get to the point of
needing surgery either based on our genes. We will however keep bracing
both children and watch closely and call Dr. D'Andrea when and if they start
approaching 40 degrees. She said they don't like to do the stapling after
50 degrees. I feel bad for the kids that they have to wear the brace but in
some ways relieved that they don't need surgery right now. [Our daughter] (8) has done really well wearing the brace. [My son] (13) is getting his brace
tomorrow. I think he will have a tougher time simply because of his age.
I loved Dr. D'Andrea and would recommend her to anyone!"


This is NOT meant to stir anything up. I think it just shows the thought process that takes place and ALL THE VARIABLES involved when a doctor decides whether or not to recommend stapling.

[gerbo]

intruiging....... one wonders whether they are doing completely different then they think they are doing, because strictly speaking, putting a staple on one body of a vertebra (and not between 2) should not make any difference in the short term.

what is the oldest they tend to take on, either in connection to age or growthspurt??