spinecor

[pat]

It is not easy, we, too, are going longer without wearing the brace; what we're doing is more shorter stretches, instead of one or two long ones; so she probably never has it off more than two hours . . . I don't know what to do . . . . . it's summertime! p

[MATJESNIC]

We just got back from the shore and there were times that Nicole had her brace off for 5 hours or so because of the beach or pool. Of course, she is not swimming many laps, so I can't say the hours don't count. There is not much we can do. As soon as we come in, she showers and puts it back on. I really don't think it will make a difference. It will work or it won't, regardless of these events.

I keep asking Nicole to try something other than those bodysuits, but she refuses. She is doing indoor performing arts camp starting next week, so it will be cool where she is.

Today is officially 10 months that she is in the Spinecor.

Anyone want to meet us in Montreal? We are going for just one night because Nicole will have her camp show the next day.
I think we are going on the 19th of July. I have to go look it up.

Happy 4th of July.

Melissa

[Celia]

The first time she went into the lake, I said "o.k. 2 hours of water fun and then get the brace back on" Well…. it’s really difficult to get a kid out of water especially when her brother and friends are in there having a grand old time. I know that 2 hours out of brace are allowed in the morning and evening and I'm pretty sure that the 4 hours are not to be taken together. I'm just hoping that when she's in the water she's weightless and it won't have any effect on her vertebrae --- wishful thinking????? :eek:

Melissa, I would love to get together but we won't be there until October.

[cyprusmom]

Hello to everyone,
as you know my daughter is going to have surgery. By now we are all very positive about it and know that it is the best we can do for her. The Spinecor was a great hope for us but with a curve of 40+ at the time of discovery and age and risser of 0, it became clear that nothing would have stopped the progression.
We just got the surgery date about a week ago, Aug 16th (my birthday) so that for me is an extra special of a day.....
We are flying to the US, Springfield, Mass. at Shriners hospital, July 17th-yes in less than 2 weeks :eek:- for the first pre-op meeting, first blood donation etc. Then we will have 3 weeks to spend in California, stay with family and for Anastasia to do her favorite summer camp at Idyllwild summer arts academy for 2 weeks....couldn't have better activity before surgery!
Then Aug.8th back to Mass. for the rest of the pre-op tests and prepare for the day.
The main thing is that she is positive and ready to have the surgery, she will only miss the first 2 weeks of the new school year.
Like everyone else she has been wearing the brace less and less, with beach trips and pool days....we do live on a very hot island.... :cool: it is hard to ask her to wear it more....
Hope everyone is having a great summer, I will keep you posted.......
Love to all,
Pola

[gerbo]

Now, just imagine what it would be like with a boston type brace, that is really, really hot. We have always sinned against the 2x2 hour rule as with lisanna's daily ballet classes, this is nearly impossible. Most days she'll have a 3 hour stretch without and on saturday, which is washday and the day of her special ballet classes she goes for about 6 hours. Mr Mills has accepted that as long as things do not deteriorate.

When Lisanna wore the tslo, we used a "coolmax" undershirt, which did have a special effect on sweating. I have tried to persuade isanna to try this one with the spinecor as well, unfortunately she is unwilling as she associates it too much with that nasty hardbrace

We alsways have seen swimming as weightless time and there fore not counting. This is surely what was said with regards to wearing the TSLO brace, so celia, i think you can relax about that one

Generally, what ever regime we want to put our daughters in, it needs to be manageable and livable, otherwise they will eventually completely rebel and not wear the damned thing at all, abit of flexibility now and again will help with long term compliance, i am sure. We do not want to destroy their youth completely, do we??

Pola, i was just thinking about you this week and wondering how things were going, so thanks for writing in. It really looks as if you are facing the future positive, this is great and i am sure well warranted. Just think of it, a few months and no brace at all; what a blessing. Can i please sincerely wish your daughter, you and your family all the best with regards to the operation. Do keep us posted

with best and warm (hot) wishes (anybody want to have another go at my polarbear joke, just to cool down a bit?) :eek: :eek:

gerbo

[MATJESNIC]

Pola,

We all wish you the best as you prepare for the surgery. It sounds as though it will be combined with a lot of fun and family visits. That is great that you were able to work it out that way.

Would you prefer that we visit you in Mass before the surgery or sometime after? Please let us know and we will make the arrangements. How long do they want Anastasia to stay before she is allowed to fly back home.

Nicole is really looking forward to meeting Anastasia.

Keep in touch. Our thoughts and prayers are with you.

Melissa

[MATJESNIC]

Gerbo,

As hot as I am, I couldn't possibly take that polar bear joke again. Our humor is so different here in the States!!!

Anyway, I agree with you that our girls have to have fun in the summer. I am sure they are all doing fine with their extra breaks.

Melissa

[gerbo]

What really bothers lisanna again and again is that with most trendy "tops", which tend to have quite open necks, the straps are so visible. If she feels strong that's ok, if she feels insecure, it becomes very tough.....

[gerbo]

Our humor is so different here in the States!!!

Absolutely not; Friends, Mash, Shrek, Steve Martin (nothing beats older steve martin films in our family) george bush, Humor in the states can be fantastic!!!

[Celia]

Oh... have you seen the new Steve Martin movie "The Pink Panther" ????? It is sooooooo funny ! I highly recommend it. :D We also saw "Eight Degrees Below" and my 8 year old son couldn't stop crying at the end.

Gerbo, thanks for the reassurance about having the brace off for more than the recommended number of hours. I certainly don't want to rob her of the thrill of childhood.

[Celia]

Pola,

I can't possibly imagine the emotions you're feeling right now. It's such a huge operation for a seemingly healthy young girl. I'll be thinking of you and Anastasia as the day approaches.

[gerbo]

Oh... have you seen the new Steve Martin movie "The Pink Panther" ????? It is sooooooo funny ! I highly recommend it. :D We also saw "Eight Degrees Below" and my 8 year old son couldn't stop crying at the end.

that was much better than we expected and really made me and my 13 year old son laugh. Our favourite remains "Roxanne" and if you have never seen it, get the dvd, get a bottle of wine and take the phone of the hook, it is so funny

eight below, that was the doggy one of walt disney wasn't it? Louise (my wife) and myself had more tears in our eyes than our children


Gerbo, thanks for the reassurance about having the brace off for more than the recommended number of hours. I certainly don't want to rob her of the thrill of childhood

it isn't really meaned as reassurance, as i am not in a position to really reassure, just sharing what we are doing, rightly or wrongly. (i think that was meaned as kind of a disclaimer celia, still, i do believe that life is for living, and we cannot stop our children enjoying their childhoods)

[gerbo]

and not to forget "three amigos", set in the heat of the mexican desert, so no polar bear in sight, seriously funny....

[meagain]

Just thought I'd jump in and update- my daughter and I took the train from Seattle to L.A. connecting to Fullerton. The Starlite Express as it is called runs anywhere from 9-14 hours late and plays funny movies like the Pink Panther repeatedly to help parents like me finally get why - "I would like to buy a hamburger" is so funny.

We were a little late for our appt. with Dr. Gorrie's office but they graciously accommodated us.

I was very happy with his thorough evaluation of my daughter. I believe some decisions are made because of a matter of degrees.

Olivia went from a 45 T.L. with original x-ray to 40 with a lift and then 33w/lift in brace. Her Mid Thoracic went from 34 to 25.

Dr. Gorrie determined she was at Risser 3 instead of 4 with the clearer x-ray, confirming my thoughts that she really isn't done growing.

The word compliance has new meaning to me, as we are working toward full-time in the brace. She seems to be getting used to it, but not without a few complaints. Luckily, our N.W. weather is not too hot.

Take care all, Megan

[Sherie]

- "I would like to buy a hamburger" is so funny.

Definitely my favorite part in the movie, I laughed until I cried.



Olivia went from a 45 T.L. with original x-ray to 40 with a lift and then 33w/lift in brace. Her Mid Thoracic went from 34 to 25.

The word compliance has new meaning to me, as we are working toward full-time in the brace. She seems to be getting used to it, but not without a few complaints. Luckily, our N.W. weather is not too hot.

Hi Megan,

I was particularly interested in your post because your daughter's curves are nearly identical to my daughter's, Sheena. She's also been in Spinecor, next week we are going for 3 month eval.

The results you are getting are much better than ours. I was wondering if the 'lift' your referring to is for the shoe? That's a big difference with and without it. I plan on going to a different dr. if there's been no improvement in-brace after next weeks xrays.

We are in Houston, it's really hot and humid here in the summer but Sheena hasn't complained too much because we just don't do much outdoors in the heat.

Take care and it's encouraging that you are getting such good results.
Sherie

[MATJESNIC]

Hi Everyone,

Megan, it seems as though your daughter is doing well with Spinecor. That's great.

My daughter has a shoe lift. The problem is that she can't wear it in flip flops or other shoes. She is hardly ever wearing her sneakers in the summer.

As far as correction is concerned, 2nd opinions are always a good idea. There are so many different ways to wear Spinecor (10 ways, in fact!!!) and of course there are varying degrees of tightness.

The brace is only as good as the doctor who fits your daughter in it.

I'm sure there are many mistakes made that can easily result in failure of the brace. That may be one reason Spinecor hasn't caught on.

Gerbo, I didn't know you had a son. That's great.

Celia, I didn't know you had a son, either. Awesome!!

You all know about my other kids because I have told you about them. So I won't bore you with details.

Take care,

Melissa

[meagain]

Sherie and Melissa: Olivia's left foot is pronated and she has very flat feet. Her feet were actually stuck upright on the front of her legs when she was born. But, the doc wasn't concerned and they eventually flexed down.

Her legs are the same length, but her left ankle is lower to the ground than the right. All along I was asking this leg length question and kind of getting blank looks.

One chiropracter put a lift in and one took it out. So, at the recommendation of Dr. Gorrie we will go with about a 3/8 inch foot leveler.

Leveling makes a difference when measuring.

I'm concerned about summer shoes too- we'll be checking out Foot Leveler's catalog for flip-flops and probably get an insert for tennis shoes. Megan

[meagain]

Sherie: The 3/8 inch lift was just put under her foot for the x-ray. Sorry, I rambled on without answering your question. Megan

[Sherie]

Thanks Megan. It's so funny this came up. Yesterday my daughter had her 2nd session with the personal trainer and the first thing she did was measure Sheena's leg from her belly button to ankles. It appears her left leg is 1/2" longer. I'm a little upset that the dr. never thought to do this. On a positive note, Sheena really likes going to the gym and so far, we are doing torso rotation and a lot of stretches and leg strengthening exercises.

Melissa, I wanted to give our doc a chance with his program and he is in the same area as me, therefore convenience is a big factor for us. But I appreciate the advice and will definitely go to another dr. if there hasn't been a significant improvement next week and will discontinue the program most likely, it's consuming a lot of our time and not to mention money.

[gerbo]

On a positive note, Sheena really likes going to the gym and so far, we are doing torso rotation

what are you using for this?


Big check up day for lisanna tomorrow; Q scan, brace adjustment with mr mills, X ray and orthopaedic review, it'll be fun (?????)

[Celia]

Gerbo,

Fingers crossed for good results tomorrow! What's a Q scan ? :)

[Sherie]

Gerbo,

We are using the torso rotation equipment at the health club.
Hope your appt goes well today. :)


We had another very disappointing 3 mth checkup. Very little change, so we are planning a trip to Montreal before summer break is over. We are also discontinuing therapy there. I am going in friday to consult with a Pneumex dr and also plan to continue the exercise program on our own.

[Karen Ocker]

Sherie:

If you search the forum there are numerous Pneumex posts but I have not seen anything about long term improvement.

Maybe you can PM those people to see how they made out.

[gerbo]

Gerbo,

Fingers crossed for good results tomorrow! What's a Q scan ? :)

q-scan = quantec scan which is a method which uses dots placed on skin over vertebrae to get an impression of the scoliosis angle and also horizontal light beams (making you look like a zebra) giving an impression of the bodycontours. Doesn't use radiation and apparantly gives a reasonable correlation with findings on x ray.

Results; not bad with an angle of 18 degree in brace, still, although strangely enough had to battle to convince the consultant to actually measure the angle; "what difference does it make whether i measure or not????" He was in a rather awkward mood not really wanting to enter in any serious questions ("I have been a consultant for many years, you know") and quite dismissive of the spinecor ("I am only using it because this was what was used here when i started working here") and " where i was trained we never braced anybody, and just observed as "bracing hasn't shown to make any difference". Just what lisanna wanted to hear ("why am i using this in the first place then")

Anyway, care and dedication of mr mills, the spinecor man did make up for it a lot, and at least, with regards to bracing we are getting what we want out of the department. A bit more constructive attitude of consultant would help though.....

[MATJESNIC]

Gerbo,

That is really good that Lisanna is 18 degrees in the brace. I don't remember what she is without the brace. I wonder if they are familiar with that method in Montreal. I will ask next week. I'm very happy for you.

Melissa

[Celia]

Gerbo,

This is good news when you consider that Lisanna is right in the middle of the adolescent growth spurt! This is probably not what you want to hear but I'm one of those "glass half full rather than half empty" kind of people ;) How accurate are the Q scans relative to x-rays? Nevertheless, it's great they're trying to reduce the radiation exposure by using alternative measures.

What is with the consultant ?????? :eek: I think the excitement is just too much for him :D

[tmom]

My son was doing Pneumex for 9 month 2-3 times a week (if anybody remembers my previous posts, yes, we went through all of this: hard brace, Pneumex, Spinecor, Schroth, you name it…). Anyway, during that time his curve only worsened from 30th to 40th. To me, Pneumex looked like a good system that makes sense, but now I kind of think that for the primary lumbar curve that my son has, it totally not working, if you look what Pneumex offers. Maybe for higher curves it works better, don’t know. Or maybe our PT didn’t know a lot…hard to say now. I don’t want to disappoint anybody, just to share our experience. That’s what this forum is all about….

[Sherie]

Thanks for sharing your experience about Pneumex, good or bad. We are going tomorrow morning for a consultation. From what I've read, and in general this seems to be true for all therapies, it works better for curves of lesser degrees. My daughter's lumbar is already 45 deg, so I'm not expecting any miracles, but hope for any improvement. The system also makes sense to me, if it truly isolates the muscles that stabilize the spine.

[pat]

Hello, we had our 9 month check-up; everyone's pleased, her #'s and rotation are holding with her brace. Did some readjustments (she grew some), and got new straps. Unfortunately, my husband (Dad!) took her, and didn't come home with any paperwork, so I've got to call and get the #'s myself! pat

[Allegra]

wow ok I have been following this whole thread (or whatever you call it) for about a month now. I've read all 54 pages and decided to finally do some posting.

I'm Allegra and I live in California. I'm 14, and i'm pretty sure I have scoliosis. Last year, when I was in 7th grade, they did a school screening, but my mom didn't sign me up for it because the testers were only volunteers, like parent helpers from the pta or something. I wasn't too worried untill last December. My back is sloped just a little more than other people's. I don't know if it's a serious problem, but both my shoulder blades do kinda of stick out. I did a lot of research, and, of course, found spinecor.

I told both my parents, but they don't believe me. I could just be paranoid, but I would really like to go the doctor just to make sure..you know, to calm my fear. Both of my mom's sisters came to visit from the east coasta couple of weeks ago, so I asked them what they thought. They think I'm just being paranoid. Maybe I am!

My last resort is to wait until high schol starts in a month or 2 when we do sports. If I want to try out for a sport, I have to have a physical. Maybe during this, I can ask the doctor.

But for now.....this is all I can think about. Being parents yourselves, I was hoping you might be able to help me. I can't believe I want to prove this when I could end up in a brace, but I just want a better life when I'm older, even if it means a little suffering now.

Thank you in advance for taking time to read this, and possibly offering advice. From what I've read, you seem to be a wonderful support group. That's why I'm asking all of you.

<3
Allegra

[gerbo]

Once you've got something on your mind and you are worried about it, it is difficult not to be paranoid.

However, I do think you might be able to relax a bit about things. You might have a low degree of scoliosis, but if it is not obvious to the outside world, it is likely to be of a lesser degree. Age 14, you are likely to be past your major growth spurts, so the risk of progression should get less.

Still, if it is on your mind you should be entitled to get some reassurance by a qualified person. Have you got something like a family doctor you could see? Plan B, i.e waiting to see the doctor when you return to college isn't too bad neither, but that could mean just getting more and more worried (and paranoid) over the next few months.

Best action I think is to ask your parents to get you a family doctor appointment, just to get it checked and "out of the way"

Best wishes

gerbo

[cherylplinder]

Hey Allegra!
Hugs to you!

Are both your shoulders even when you look in the mirror from the front?
If one shoulder is higher than another, that is an indication of a thoracic(like between your ribs) curve.

Are your hips at the same level? Are both legs the same length?
If your hips are not at the same level,i.e. even, or if one leg is longer than the other, that may indicate a lumbar(lower back) curve.

You could also get your mom to look for a rotation when you bend over. That is called the Adams forward bend test. A true scoliosis will show a rotation on this bend test.
There are probably pics posted on the forum of people doing this test. Do a search-for an idea of what scoliosis would look like in this test. I know that there are pics posted on scoliosis-support.org. Look under member galleries.

I couldn't tell if you might be describing a kyphosis(when you said your back curves more than normal) which is when it looks like you are slumping.
Kyphosis is not scoliosis, but is of concern and is also treatable with a brace.

If you have to wait until your physical for a doctor to check you, maybe these simple tests will give you some peace of mind. The Adams forward bend test is what they use to screen for scoliosis. I would be sure and have the doctor check you when you have your physical. It should be part of the physical, but you may have to ask for the doc to check you for this.

Hope this info helps! Best of luck and warmest wishes!

Cheryl

[cherylplinder]

Hello, we had our 9 month check-up; everyone's pleased, her #'s and rotation are holding with her brace. Did some readjustments (she grew some), and got new straps. Unfortunately, my husband (Dad!) took her, and didn't come home with any paperwork, so I've got to call and get the #'s myself! pat

Congrats Pat!

[pat]

Thanks Cheryl, it's such a relief, . . . till the next one! pat

[gerbo]

pat, is still close to zero degrees?

[Allegra]

Thanks for replying, Cheryl and Gerbo.
Cheryl: My shoulders look even to me, but they are a bit slanted-of course that could be normal.
I'm pretty sure both my legs are the same length, although my left is more flexible. My hips are what I'm worried about. They are shaped differently, rather one is regular, where my hip just naturally slants up to my stomach ( a small curve). The other hip......it's kind of round, and then slants up to my stomach. I think I might be rotated but I can't figure out which side it is! At first I thought i was to the right, but my shirt seams on the sides are more to the left-geeez this is so confusing!but...hugs back <3

Gerbo: I just turned 14 in May, and I'm pretty short. My back is flexible, and I still have some more growing to do. I'm taking tumbling this summer, and the coach told me I have a very flexible back. That's why I'm hoping it isn't serious, and would be easy to fix. (it probably isn't serious) and uh gerbo? I'm going into high school, not college, although I'm in all-advanced classes! But I don't want my summer to turn into paranoia central!

*Maybe I'm missing something here. I neglected to tell you that my father has polio. It partly paralyzed him when he was very young. He was living in Lebanon at the time, and came to Pennsylvania for surgery. They put a metal rod in his back to keep it straight, which is still there, after 40 years. He just turned 50, and is doing fine. He's a great lawyer and lives a perfectly normal life, whether driving his saab in sport mode, or riding in is awesome titanium wheelchair. I think I first gt the idea that I had scoliosis from him, because of his back. ???

Thanks for reading through this really long message that I wouldn't read if I saw!

<3
Allegra

[Allegra]

oh and I don't think it's kyphosis, because I don't slump like....not to be mean, but an older person might. It would be the opposite.

[Snoopy]

Allegra,

Have you ever thought maybe your problem is with your hips and not your back? Just a thought. Also, may I ask how tall you are and how much you weigh. I know several young teenagers who don't have Scoliosis whose shoulder blades stick out because they are very thin.

Mary Lou

[Allegra]

hhmmmmmm...Mary Lou, I never thought of that.
I'm about 4"11, maybe 5 feet, and I'm 90 lbs.

[Allegra]

I don't know if this helps, but in the case of pear or apple body shapes, I'm pretty sure I'm an apple! :)

[gerbo]

lisanna is getting worried that her right breast might stay behind in development, as a tight strap presses it down, whilst the "free" left breast will grow unrestricted?

Any thoughts on this? I cannot work out whether this is likely to be an issue.

gerbo

[pat]

pat, is still close to zero degrees?
Hi Gerbo, yes, she's still holding at a "1" in brace, and she grew an inch since last appointment, so that's encouraging. I read your most recent post, that's something I never thought of yet, my daughter's not there yet . . . . thanks for raising the question, anxious to see some replies. pat

[gerbo]

Hi Pat, that is really fantastic!! Catching it early seems to be working there!

Lisanna seems to be stuck at about 18 degree in brace, as such not bad, but I still want to try to get more out of it. We have started seeing a physio with the specific purpose of loosening the vertebrae more on the concave side. Don't know whether it will work, but something is stopping the spine moving beyond the 18 degree, hopefully some ligament stretching will be of benefit.

One can only try....

Gerbo

[Wack]

Hello, I've just joined after reading the thread. I have a 12 year old daughter with a 21 degree curve diagnosed one month ago. We live in the UK, and our orthopaedic surgeon does not recommend bracing at all. I was very interested to read Gerbo's experiences with his daughter - do you actually live in Sheffield Gerbo? If you are from out of area how did you get referred to the NHS hospital there? As far as I can see there aren't many places in the UK where the spinecor bace is available on the NHS - is going private the only option if you aren't lucky enough to live near an NHS hospital which uses the spinecor brace?

[gerbo]

welcome here and so sorry to hear you've found yourselves in this situation.

questions; where was your daughter seen? which consultant. What level is the curve? Has she started her periods yet, is there still a lot of growth expected?

perceived wisdom is, that 21 degree is below treatment level, but any significant worsening over the next three months (5 degree extra) would mean bracing. Some would advocate to wait for that next review (is that planned?) others on this forum would say; go ahead and treat. Hard decision I have to say as a fair proportion of curves of 21 degree will not get worse (i am sure somebody will be able to quote percentage chance of this happening)

we actually live in the midlands, were initially seen in birmingham, but as we were not happy asked for a second opinion in sheffield (knowing they used spinecor, and mr mills, the orthotist who owns the spinecor firms works there)

your GP these days can refer you to any hospital anywhere in the country, a benefit of labour's emphasis on "choice", so you do not need to go private. We did that initially though, just to get things sorted a bit quicker.

hope this helps

ask more if you want

best wishes

gerbo

[Wack]

Thanks Gerbo,

We live in Cardiff so the referral might be more complicated as the NHS in Wales is run separately and has not gone as far down the choice agenda. My wife also had scoliosis as a child and had surgery and is keen to do anything to avoid that for our daughter. She is absolutely convinced that we need to get her into a spinecor brace, but I am unsure of exactly how to go about that given the approach locally. That's why I'm so interested in your experience so any tips gratefully received. I've noticed on lists that Southampton and cambridge also use spinecor, but couldn't find anything on their websites.

She is due for a four monthly review in October. As I said it seems that they only observe and do not believe in any sort of bracing in the Ortho department here.

She has not started her periods and from her x-ray seemed to have a fair amount of growing to do. She is already quite tall for her age. All I was told was that she had a 21 degree curve with a smaller compensating one in her lower back and that they observed every 4 months and operated if the curve progressed beyong 45 degrees. He said that the odds were against it progressing but... and yes she also dances like so many on here.
Wack

[gerbo]

few things you can do

- contact mr mills via email/ contact details on spinecor website
- contact "health authority" (is it the local health board???) area where you live, ask whether there is a patient liason person, speak to him/ her and explain your situation, basically asking for a "second opinion" and as this particular treatment is not available in wales you would like that in the UK, is that possible? In the past we had something like "extracontractual referals" in the UK, not sure whether they still exist. See how far you get that way.

- private option; we paid about 400 pounds for initial assesment for suitability and xrays, I thought it was worth it, mr mills would give you all required details. I remember being quoted about 1500 pounds for the spinecor itself as a private option. Regular reviews would be on top of that i would think

in cambridge you'd deal with a different consultant, but still with mr mills, so that would be ok, in southampton, you'd deal with a different orthotist; skill of the person applying the brace is important, that's why i would not go anywhere different than sheffiled or cambridge

- if my wife had surgery for scoliosis i would get my child braced earlier than otherwise; spinecor is a relatively person friendly option, knowing what i know now, i would go for it

- this is an excellent forum, but mainly USA based, additionally consider visiting www.scoliosis-support.org which is more UK based, I use both forums myself, giving you a wideranging set of opinions and experiences

gerbo

[pat]

was that she had a 21 degree curve with a smaller compensating one in her lower back
Wack
My daughter, whose been in a Spinecor brace for 9 months now started w/a 19 thoracic and a smaller compensatory lower curve; we put her in a brace so early cause her sister had fusion surgery two years ago. She's doing beautifully with it, complete compliance and her curve's down to a "1" (in brace). pat

[Wack]

Thanks Gerbo and Pat that's really very helpful.
Wack

[Celia]

Pat,

So happy to hear the spinecor is holding your daughter's curve at "1" degree !!! YAY !!!! :D

[gerbo]

You're back then! Holidays I suppose, enjoyed it?

[Celia]

I was dangerously close to getting cabin fever with hubby around LOL ! All kidding aside..... it was really nice. Thanks for asking. Here are some pics of the vacation, hubby is the one fully dressed on the beach (with cap and sunscreen of spf 50 ) :D :D :D He wants us to spend the *entire* months of July and August next year at the cottage :eek:


http://i41.photobucket.com/albums/e251/sealy25/beacg215.jpg
http://i41.photobucket.com/albums/e251/sealy25/beacg235.jpg
http://i41.photobucket.com/albums/e251/sealy25/beacg.jpg
http://i41.photobucket.com/albums/e251/sealy25/beacg230.jpg

[cherylplinder]

Hi all! Rachel had her appointment today! Her thoracic curve was 20 degrees and her lumbar was 18 degrees. She grew 2 cm. That is down a bit from last measurement. Last was 23T/22L. Yay!
Today was the day for Pola's daughter's surgery in Springfield. I look forward to hearing.
Hugs to all, my friends!
Cheryl

[MATJESNIC]

Cheryl,

That is great! Did you go to Montreal or somewhere else? Are you talking about in-brace? I'm so happy for Rachel.

I have been thinking about Anastasia all day. Today is Pola's birthday. I spoke to her on E-Mail and they were just about to close her up. That was the last I heard. I'm sure those first hours after surgery are some of the most difficult. I'm sure we will all hear something tomorrow.


Melissa

[cherylplinder]

Hey Melissa!
Yes, We came back to Montreal. I am so comfortable with Dr. Rivard and Dr. Coillard. They are so wonderful. They have done such a wonderful job with Rachel. I am afraid to change anything.
I can't tell you how relieved I was today. I expect the worst and hope for the best. 20/18 would be a best for me.The 20T/18L is in brace. She was last measured out of brace in April. Her curves were 30T/20-somethingL, out of brace-that is down from 38T/27L in January, but you never know how measurement error has played a role. I was just happy that it didn't measure larger than January.
Not only that, but Rachel is completely pain free. She has had back pain for so long(2 years). Even if her curves were getting worse, I would not take her out of the brace.
She used to have pain if her brace had to be off for more than an hour or so, but now she never has pain. She can play for a couple of hours and has occasionally gone longer, and not have any pain.
We flew to Albany and drove to Montreal from there this time. I hope to drop by and see Pola tommorrow. Springfield is a little over and hour from Albany. We don't fly out until Friday morning. I took Wednesday free from travel. I was just too beat to travel every day this week(We got back from camping in the Smokey Mountains at 1:30 AM Monday morning, and I drove to Birmingham, AL at 10PM Monday night to catch a really early flight Tuesday.)
When is your next appt for Nicole, Melissa?
Hugs to all my dear friends! You are the best support group! I love you! If you need anything, I obviously travel.(lol)Be glad to help!
Cheryl

[Celia]

Cheryl,

I am soooo happy !!!! YAY!!!! :p I know you were really worried.


I haven't heard from Pola in ages! I'm hoping everything is well with Anastasia and that Dr. Masso got great results.

[AILEA]

Cheryl, good news!
I was looking forward to hear from you; Now, with those results, you can see you made a good decision; (We all know how difficult is to make such a decision!).
I´m looking forward to hear from Pola too, i´ve been thinking about her all day. I hope they´re ok, and we hear from them soon!
hugs!

[cyprusmom]

Hello wonderful mothers and fathers,
thank you for thinking about my daughter. She had a very successful surgery yesterday, all went very well, doctors and nurses are very happy with the results and how she is doing now. Doctor Masso of Shriners in Springfield is an excelleny surgeon and (with a rather long fusion, T3-L4) got her corrected to less than 10 degrees. I can't say Wow, because fusion is fusion and believe me I was the last person to think I would let that happen to my daughter who's been dancing for years.....like most of us spinecor mothers and dads kids. Unfortunately we didn't see her scoliosis until it was 40degrees and there wasn't much any brace could have done for her.....
After meeting Pat (yes Pat from spinecor) and her wonderful 14 year old who had the surgery 2 years ago I realised that fusion especially for a healthy kid, doesn't mean the end of their being 'normal'. And great Pat also invited us to one of her scoliosis support groups she runs at the Hartford hospital which coincided perfectly 3 days before my daughters surgery. We met about 20 kids mostly post-op who are all wonderful healthy, 'normal' looking and happy.
Anastasia is now almost 24hours post-up, I am staying with her at all times which is great, she has her own room and own nurse. Excellent staff here at Shriners, excellent doctors, highly skilled and specialised to help the families too. Never felt safer in a hospital/doctor situation.
Cheryl, thats great about your daughters results, keep it up!
Hugs to all of you, those that I met, that I am about to meet, Melissa and Cheryl, and those I might never see in person....
Pola :)

[MATJESNIC]

Pola,

We are so happy that the surgery is over and Anastasia is on the road to recovery. We wish you all the best.





Melissa

[cherylplinder]

Pola, Anastasia, Bill, and Odie(sp?),
It did our hearts good to get to see you yesterday! We are all on this journey together, and being together makes it bearable! I hope all is going well today!
Much love!
Cheryl and Rachel

[AILEA]

Pola, glad your daughter´s surgery is over and went well!
I hope she has a quick and easy recovery.

Best wishes from "one of those you might never see in person"

Ailea

[ohiomom]

Hello, I am new to NSF and welcome any and all info,suggestions,comments that can be offered. My daugther is 10yrs old and was fitted for the spinecor brace today in Erie PA. I see alot of parents going to new york and montreal for this and wonder, am i missing something? She saw an orthopaedist in cincinnati, which was our second opinion since the first one wanted to have her fitted for the milwaukee brace with the neck ring and everything. I had a hard time believing that was her only option and that nothing else was available until I started looking into other bracing options. I saw spinecor and I was thrilled. I hoped it didint look too good to be true, that it would be able to benefit the same if not better than any of the traditional braces. She has a triple curve however, the second orthopaedist believes the high thoracic curve is congential and that the other two curves are not a result of it. I am confused to hear that one curve is congential and the others idiopathic? Has anyone else ever heard or dealt with that? In any case, I am willing to see if bracing her 40T 34L curves will provide any positive results. In the brace they measure 32 and 21. This is obviously something different and difficult for her to deal with and I mentioned she may be able to find kids her age going through the same thing on forums like this. Does anyone know how she can get in touch with spinecor kids or any scoliosis child to exchange thoughts and questions with? Everyone sounds so helpful and hopeful in here so I look forward to being in here with you all! :)

[christine2]

Try spinekids website she will have fun on that

[Celia]

I agree with Christine, Spinekids is a great place for kids.

[MATJESNIC]

Christine,

Didn't you have your appt. in Montreal yesterday? How did it go?

Melissa

[MATJESNIC]

Christine,

I just saw your post. That's great news!!!


Melissa

[ohiomom]

Thx christine and celia, I will look into that for her!

[desheah]

hi everyone,

i posted awhile back looking into the spinecor for my son lucas 4yrs 9mos old.

brief history: diagnosed with infantile scoliosis at 18 mos. braced with a tlso during the day and a charleston/bending brace at night for 1 yr at children's boston, ma. then serial plaster casting for 2 yrs at the shriners in erie, pa with dr. sanders.

in june, lucas had a hard brace made in erie that looked a lot like the cast. he finally had a standing x-ray since he had always been under anaesthesia with the casting procedure and therefore, laying down. in brace, he was 20o. considering he started out at 68o/45o, his casting experience has been quite a success. now that he is closer to 5 yrs old and not growing quite as quickly, i really wanted to get him into a brace that would still potentially correct his curve further, but with the help of his own muscles.

long story longer, we ended up going to montreal to see drs. rivard and coillard in july, and lucas was fitted with the spinecor. in brace, he is 13o. we go for our follow up appointment this thursday. i am hopeful that we will continue to get good news. i have been very happy with this brace, and lucas moves so well in it. i will post an update when we return.

also a response to marta regarding going to erie versus montreal -- since lucas is so young, dr. sanders would not fit him with the spinecor. the youngest they have ever fit is 7 or 8 yrs old. so we did not have the option to go to erie. therefore, we went to the inventor. actually, lucas is officially the smallest child that they have fit for this brace. so my point is, i think that because your daughter is older, and you have the option of going to erie, then you are all set. i love erie although it was quite a trek for us for 2 years from massachusetts, but i would do it all again . . .

thanks for letting me ramble!
deshea

[christine2]

Hi Desheah

My name is Christine we just got back from Montreal and my 6 year old was fitted for the Spinecor. She had a reduction from 33 to 9 degrees. What a wonderful thing. It works better in younger kids. It is very important that it is fit PROPERLY!!!

That is why we went to Montreal, The inventers. I have no dought in my mind that my daughter is getting the best treatment availible.

Christine

[desheah]

hi christine,

i saw your post on another thread. that is fabulous news about your daughter's correction in the spinecor. i hope that lucas can further correct with this follow up appointment.

i agree that for the children who are younger, then it is probably best to go to drs. rivard and coillard, but i do believe that other places can follow the same protocol and make the spinecor work in the older children. i didn't want marta to worry about her decision to travel to erie. ;)

deshea

p.s. did you take the train to montreal from ct? i looked into it from boston, but it is a long, long trip that way! plus, my sister and brother in law live in northern vermont so we combine it with a family visit. :D

[ohiomom]

Wow, I kind of wonder about the whole fitting properly thing now. I'm sure these orthotists know what they're doing but it did cross my mind as to the correct procedure for doing so. It seems hard to believe that the spinecor is helping to manipulate her curves because she is pretty receptive to it and is doing well even though she has not yet worn it for the 20hrs/day that we are slowly working her up to. Did everyone else start their children out w/a few hours a day up until about a weeks time? Is anyone else braced w/curves similar to alyssas? I'm just curious if anyone has had positive results with somewhere near the same degree of her curves.

[christine2]

We drove. We drove to Plattsberg NY(Melissa's suggestion) and stayed over night there the drove to Montreal in the AM. Then drove straight home (6 hours not a bad ride )

I am sure there are other Doctors that can fit the brace. It is done thru computer program. I think that anyone who has taken the time to even research other possibilitys for treatement is already one up in the game. My pediatrician was almost offended that I did not follow her advice.

I have no regrets.


After they fit my daughter it just stayed on. No one mentioned easing her into it, it just stayed. Erica has accepted it so far. Not a single complaint. I am sure there will be issues once school starts. (the difference may be age. My daughter is only 6)

[Celia]

Marta,

It's really interesting that the spinecor was prescribed for a congenital curve. How big is the congenital curve ? I guess by wearing the spinecor they are trying to correct the two other curves. Are you seeing Dr. Sanders ? I'm surprised more people don't go to Erie and get the brace for free instead of blowing $6,000.00 to see Dr. Deutchman. I live in Canada and personally I would rather see Dr. Rivard and Dr. Coillard who are the inventors of the brace. The brace only cost us $2,900.00 and it was fully reimbursed by our insurance company. I don't know if it's more of a problem to get reimbursed by insurance companies if one sees a chiropractor.

To answer your question, my daughter started wearing the brace 23/7 right away - there was no problem with compliance.


Deshea,

How did the test go on Monday ??? I got a hold of the vertebral stapling articles from the library. I'm going to bite the bullet and spring for a scanner today.

[cherylplinder]

Ohio mom,
Rachel's beginning curves were 38/27 out of brace. She is now 20/18 in brace. She wore the brace anywhere from 20 to 23 hours a day from the first day. She loves her brace. With it she is pain free. She had significant pain from her scoliosis. She has worn the brace since January.
HUGS,
Cheryl

[ohiomom]

Celia, yes, I was pretty confused to hear that the orthopaedist believed her top thoracic curve, 34degrees, to look congenital yet not believing it resulted in the other two curves. He tried to explain the way the way resulting curves usually form from a congenital curve and apparently alyssa's didnt so bracing should be effective? I guess there's no harm in trying. She was also found to have an abnormailty with her brain stem upon her xrays from the 1st orthopaedist and has had an mri done, she will be having another done next week to make sure there isn't an underlying cause that should be addressed. Apparently it sits lower than it should but the neurosurgeon said that is actually pretty common and not a concern but 2nd mri will confirm that. It's one thing to try to grasp the scoliosis thing but then to try and understand what else is going on with the whole neurology thing, I'm telling you, I just feel like I'm at a loss sometimes. I try to get online and research and understand the various aspects of everything but theres sooooooo much to try and learn, it's pretty extensive. I'm doing what I can and remain grateful and hopeful about everything.

[ohiomom]

Has everyone in here had their children fitted for spinecore with the aid of computer imaging? This was not done for my daughter. The orthotist took measurements of her w/ measuring tape and recorded them, since we weren't 100% sure about the brace at the time. Upon arrival of her appointment he basically started fitting her into the brace, I am kicking myself now for not being more vocal about him not having some more precise knowledge as how to custom fit her for her particular curves. Her orthopaedist is here in ohio, however, orthotist is in PA. I do believe I have some questioning to do here. She will see him again next month, does anyone have any suggestions for anything I should address him about. Perhaps if you can give me a breakdown of what your children went through pertaining to the fitting and follow ups of spinecor, so I know what is usually the protocol for spinecor. So very disgusted right now, hope to hear from any of u soon, thx.

[desheah]

hi marta,

maybe i'm a little confused, but that is pretty common! are you only seeing jonathan the orthotist in erie through presque isle orthotics (or some name like that)? did you go to the shriners in erie? if you didn't, then i would highly recommend going to dr. sanders (an orthopaedist) for a second or even a third opinion about your daughter especially considering the potential congenital nature of one of her curves. of course, this is just my opinion, but dr. sanders is a wonderful doctor, and he works closely with jonathan in making braces. considering they are down the street from one another, it is a much better situation than the ortho in ohio.

as for the spinecor fitting, drs. rivard and coillard did use a computer program to figure out the best configuration for the straps and such for my son. i believe that they based this on the x-ray that they took out of brace and mapped points on it to correspond to the placement of the spinecor. then handling lucas, they manipulated him with corrective movements and placed the bands accordingly.

did the orthotist have x-rays on hand of your daughter? perhaps then with the x-ray and the tape measurements, he put those numbers into the computer in between your appointments . . . you can always ask. she is getting correction in the brace from your initial post. perhaps at the one month follow-up (you will have one right?), they will be able to further correct her.

good luck!
deshea

[ohiomom]

Hi, deshea. We are in central/southern ohio and the only orthopaedist that I saw that deals with spinecor braces was in cincinnati. Jonathon makes trips to cincinnati @every two months which is how we got in touch with him. We went to Erie to get the brace sooner. Jonathon did not have alyssas xrays or even notes as to the degree of her curves. We went by my memory of her initial xrays of the orthopaedist we saw in columbus. He tried to have copies faxed and emailed but the images were blurred and small and he was only able to get two of the curves measurements on his own from them. I feel he should have obviously had this information in his file already especially since that would have saved us alot of time waiting around for everyones nurses to send out and compile information. Yes, we did see some correction with the brace her thoracic curve went fro 39 to 32 and the lumbar one from 31 to 21. I just wonder if we can get better correction if the fitting had been done utilizing the spinecor software? I am pleased with the spinecor brace and perhaps i am nitpicking about the technicalities, but that is what i do, i just wanna know that she is getting the best possible correction that she can.

[cherylplinder]

Marta,
I'm a bit confused. Does your daughter have a high thoracic curve that is 34 degrees, another 40 degree thoracic curve, and a 34 degree lumbar curve?
It sounds from your post like they are bracing the two "idiopathic" curves. What does the congenital curve measure when she is in brace?

I also would get a second opinion from Dr. Sanders in Erie. Jonathan has been fitting the brace for quite a while, I think, and it might give you comfort for him to look at her. Be sure you tell them that you want an appointment with the orthotist, too, not that he just be available. Let them know you definitely want to see him.

We also go to Montreal. Dr. Rivard and Coillard are wonderful. You couldn't go wrong there, but it is expensive.
We are having excellent results, though, and I haven't wanted to change anything, even with the expense.

Rachel started out with a 38 degree thoracic curve and a 27 degree lumbar curve. On her first fitting, she was 31/19 in brace. In April, she was 23/22 in brace. This time she was 20/18 in brace.

HUGS,
Cheryl

[cherylplinder]

I was typing as you were posting. I see that you have already seen Jonathan. I understand your reservations.
Dr. Coillard did not use a computer to fit Rachel's brace, either. Maybe it is not necessary if you have a lot of experience fitting the brace, which I think Jonathan also has. I hope that makes you feel better.

Again, you could always make one trip to Montreal and see how you feel. It really is not very far from you(8 or 9 hours?)
ALso, maybe you can have all your original x-rays with you on your followup appt. We tried e-mailing x-rays once, and it didn't work for us either.

I hope it is some comfort that the original correction Rachel recieved in Montreal is close to what you acheived with Jonathan on first fitting.

I know how stressful this all is! You are in good company.

A big cyberhug!
CHeryl

[Celia]

Cheryl,

What wonderful improvement in such a short period of time for Rachel! I'm really surprised that Dr. Coillard didn't refer to the software program for the initial fitting - are you sure :confused: We had a similar experience to Deshea and Lucas. Deirdre had three x-rays prior to the fitting - P/A, lateral and prone. After having the x-rays done, measurements were taken and these numbers were jotted down on the computer. Deidre was then fitted with the brace and we were sent off for the final inbrace x-ray. The first followup was 5 weeks later and the following one 5 months thereafter. Each time we go, measurements are taken and plotted on the computer and again adjustments are made and we're sent off for the inbrace x-ray.

I don't blame Marta for being concerned! Granted she is getting some correction but maybe she can be getting *better* results?!

[ohiomom]

Thanks so much, it is so nice to get some feedback and see how everyone else deals. I'm glad to hear your daughter is getting such positive results, that's really great. My husband is trying to calm me down and wait until the appt. in cincy next month to see what's goin on before i make plans to start leaving the country! Plus I don't know how that would work with the insurance seeing as how they've already covered their share for her current brace, surely i wouldn't get approval for the same thing? I don't know, I'm trying to relax and be open-minded.

Does anyone have any suggestions as to the undergarments the girls wear with their braces and how long it took them to get that no/2 strap buttoned? i'm sure everyones varies but my daughter is having a heck of a time trying to button one that is behind her, i'm sure it will take time but she gets soooo easily frustrated and discourged. She doens't like the bodysuits and she also doesnt like regular undershirts, she complains alot about the sleeve she has and how tight it is. Sure this is common in the kids adjustment period? Well, this is the first nights she's sleeping in it so we'll see how it goes. Oh yeah, how does everyone wash it? She wants me to wash it hoping that is becomes less rigid. Thx for all your replies. Hope I can be as helpful sometime!

[christine2]

Please feel free to e mail me or perhaps we can speak on the phone. I did that with Melissa and it helped me tremendously!! My husband and I researched alot both different doctors as well as research papers.

firstcmd@sbcglobal.net

Christine

[MATJESNIC]

I agree that it is easier to email or talk on the phone about all of these specifics. I would be happy to help. My address is matjesnic@comcast.net.

Sept. 4 will be one year that my daughter is wearing her spinecor so I could really give you some of our experiences.

Melissa

[cherylplinder]

They did put Rachel's numbers in the computer. I didn't realize it was a program for fitting the brace. Sorry!

Be happy to talk to any of you buddies any time! My e-mail is cherylplinder@hotmail.com.

Hugs!
Cheryl

[Celia]

I'm almost certain that Marta would get better results if Jonathan had at the "very least" an x-ray to work with :D

[ohiomom]

I'm wondering what the girls preferences for bodysuits are in here? I went to bodysuit.com and ordered a couple and now I've just been browsing through the specialclothes.com website. They seem to take quite awhile to ship out, is it worth it? Are they just as nice and/or better than bodysuit.com? :confused:

[MATJESNIC]

We tried Special Clothes and Nicole didn't like the way they fit. But you may have better luck. They are very nice and will work with you. Nicole was happy with bodysuits.com. Pat recommended them to us.

Melissa

[gerbo]

re clothing; lisanna prefers not to use any bodysuits at all, the underwear currently in fashion (in the UK at least) have a bit of a "hotpants" appearance, with slightly longer legs, they suit her her fine. Toppart of the body doesn't need anything

re software; main reason to use this is, is that with four straps and different ways to attach these, there are many different configurations. Level of apex and direction, and also number of curves are variable and all have their own configuration of straps, hence need software, just to remember. I suppose if the montreal drs come across a curve they see a lot of, they will not need to use the software, as they remember

cheryl; isn't your rachel doing fantastic!!

gerbo

[cherylplinder]

Thanks, Gerbo! Yes, She is doing fantastic!
I know you are encouraged with Lisanna's results. Like you, I keep hoping that Rachel will curves will continue to improve, but will be relieved if she even holds where she is.
I keep reminding myself that the literature on juvenile scoliosis is probably primarily based on traditional braces and not the Spinecor.
I am hopeful now that she may avoid surgery.
Thanks for cheering us on!
Hugs!
Cheryl

[pat]

We've been ordering bodysuits from Bodysuits.com now for about a year now, with great success! Rita and Denise are most helpful, and know all about Spinecor and what bodysuits work with the brace. Pat

[clrodefeld]

My daughter was recently diagnosed with scoliosis... she is 13, and her curves are 31/32...

Does anyone know of a doctor in NC that specializes in the Spinecor brace?

[cherylplinder]

You can check the spinecorporation.com website for the nearest provider. Several forum members have gone to the Shriners in Erie, PA to get their braces. All treatment, including the brace, is free at Shriners to children under 18.

[desheah]

hi everyone,

we're back and not going anywhere for awhile! i'm pooped - to borrow a hokey pokey elmo phrase.

we went for our 1 month follow up to montreal for the spinecor. lucas had an adjustment = tightening of straps and then we were sent for an in brace standing x-ray. he is 18o/14o (1 month ago he was 14o/20o). drs. rivard and coillard were pleased with the results since they were able to get a better handle on the lower curve. we like this brace a lot and decided to fork over the big bucks and go for it. we have our next appointment in 5 mos (Jan).

i just sent an e-mail to dr. sanders, who was lucas' ortho for the past 2 years for casting, telling him of our decision to go with the spinecor versus the tlso. he sent a very short reply back so i'm not sure if he's pissed or if he deals with parents jumping ship all the time. :confused: i feel kind of bad, but then again, lucas is our child, and we are the decision makers. i will be sending dr. sanders lucas' most recent x-rays and pictures of him in the brace. i would like to keep him informed and be able to ask his opinion if anything changes in the future. i don't want to burn any bridges!

i think that's it for now . . . :D

deshea

[desheah]

okay, 2 posts in a row from me!

i wanted to ask a question regarding the vest that they put in prior to the x-ray in montreal. i believe that it has metal in it that puts a "dot" on lucas' x-ray. what is that for? measurements?

thanks in advance,
deshea

[ohiomom]

I just received the bodysuits from bodysuits.com, love the colors but i know they will be too big for alyssa, even though they are xsmall. Has anyone tried altering these? Sewing and alterations are not my thing but I wondered if it was possible to do this w/out making them look awkward. I'm getting really sick of washing the same bodysuit everyday when she takes it off for the two hours each day, i'm usually heaping everything outta the washer and dryer into or around baskets! But, they do have to fit properly now don't they. Does anyone get theirs from anywhere else besides special-clothes and bodysuit.com?

deshea, glad to hear you got some positive results at the one month checkup, alyssa will go for one on the 18th, hope to hear good news like u!

[Celia]

okay, 2 posts in a row from me!

i wanted to ask a question regarding the vest that they put in prior to the x-ray in montreal. i believe that it has metal in it that puts a "dot" on lucas' x-ray. what is that for? measurements?

thanks in advance,
deshea



I always thought it was a lead jacket that protected internal organs from radiation but I was told otherwise at the last appointment. :rolleyes: I'm not sure how dr. Sanders feels about you jumping ship, some doctors do take it on a personal level. I would send him chocolates and some flowers or else write his name up in the sky and say THANK YOU THANK YOU for saving my child's life :p :p O.k. I'm getting a little carried away..... maybe just a little "thank-you" would suffice.

[dizzymom]

New to site, interesting read. Have 14 yr daughter- been Boston bracing- 4 yrs- curve worsening. Referral to surgeon. now 30 in brace-thoracic.

Looking at Spinecor..... Atlanta is closest for me- 7 hours- I'm in eastern NC. Do those of you who have used this awhile feel it is helping? I take it from the site, most kids prefer it over the hard brace.

Anyone have trouble with getting approval thru insurance?

Also saw where Shriners does it free. Any other info on this and are they as good there as Dr D and Dr L- except for the Canadian Docs.

Actually got an appt in just 1 month when I called- but having difficulty with the $6000 up front. Any suggestions or helpful info would be great!

Neva

[gerbo]

blasted, $6000 upfront, that's a lot, is that the going rate??

For what it is worth, and you might have seen this already, this is link to the spinecorwebsite http://www.spinecorporation.com/English/index.htm , with a list of treatment centres

[Sherie]

I think we paid $4500, 6k sounds high to me.

[Celia]

I think the chiropractors charge more *coughs* because they do some phoney baloney eye exercise testing to "correct" the scoliosis. :D

[dizzymom]

I had not found that web- the only one that came up for me was Dr Deutchman. This one was much more informative.

It is the Atlanta tx center listed on the site, as well as the Dr Lamanti. :confused: I was alittle concerned when he mentioned the eye thing and vibration something therapy.

I read that some were not as impressed with the Jonathan. But sounds like Dr Sanders is good at it. Any other suggestions. I don't think Pa is much farther than Atlanta for us. If you all recommend those in that area. Any other recommendations for Doc impressed with.

So is everyone mostly impressed with Spinecor and the results so far. Or not. Did insurance pay anything?

Neva

[gerbo]

So is everyone mostly impressed with Spinecor and the results so far

although i cannot answer for "everyone", i think that results vary, some, specially with smaller curves had very good corrections, others, with bigger curves haven't always reacted that well. I (well, my daughter) started with a high 20's degree curve out of brace and currently has a high teens curve in the spinecor. I'd love that to come down more, but would also be fairly happy to keep it this way, considering that spinecor literature suggests that eventually you keep the corrected curve, rather than going back to the original curve, as is the case for hard braces.

My feeling is that with a 14 year old (past her growth spurt??) you have less room for manouvre, might end up with surgery anyway (as the boston is clearly not stopping it), so what have you got to loose?? (besides lots of money)

The spinecor is easier to cope with for the patient than hard bracing, so there is the argument that if you torture you r child anyway (as we all have to do) you might as well do it with the spinecor. However, apparantly proper fitting is paramount, and if living in the USA, I would consider, if only once, to get my child assessed by the drs in montreal. Not sure what the financial implications of that are. (Anybody? What do they charge? For brace, xrays, consultations??) If this initial assesment gives a large correction, you know you could well on to a winner, if it hardly corrects from the beginning; your chances will be less, but hey, at least you tried

gerbo

[cherylplinder]

Glad you answered, Gerbo! I'll just say "well said". As usual, I couldn't have said it better! He's such a good mind to have when you're analyzing your options!
Hugs!
Cheryl

[christine2]

We just went to Montreal 3 weeks ago. We paid a total of $3534.00 which include 2 x tra body suits. We are also expecting reinbursement of $2434. in out of network insurance. From all of the research we have done the placement of the brace is extremely important to get the best results!!!!

Perhaps if you could get a referal from a orthopedic in network you may be able to fight for in network benefits.
Christine

[jgd1991]

I think the chiropractors charge more *coughs* because they do some phoney baloney eye exercise testing to "correct" the scoliosis. :D


I would be careful to discredit someones work without giving good back up research to support your opinion.
There seems to be a number of research articles connecting scoliosis to a vestibular problem.
I think that the additional cost to evaluate the vestibular system is worth doing, based on my readings.

For example i found this paper

ARE ASYMMETRIC OTOLITH VESTIBULO-OCULAR REPONSES A
PREDICTIVE FACTOR FOR IDIOPATHIC SCOLIOSIS IN CHILDREN?

Sylvette R. Wiener-Vacher, and Dominique Antolini., Nn. 1

In idiopathic scoliosis spinal deformities start to develop at the time of the initial rapid growth at the
onset of puberty. A suggested cause of IS is a disequilibrium in the otolith vestibular control of the trunk
muscles. Supporting this hypothesis our previous results (2) showed that 67% of children with IS, but no
other inner ear or neurological abnormalities, had an asymmetry of their otolith vestibulo-ocular reponses
to the Off Vertical Axis Rotation test. These were significatively greater than in a control age-matched
group of normal children. We suggested that this asymmetry was a central otolith vestibular system
disorder and could lead to a vestibulospinal system imbalance, which would then provoke IS.
The goal of this study was to determine if this asymmetry exists prior to the appearance of the spinal
deformities.
Our preliminary results show that the vestibulo-ocular asymmetry appears before the spine starts to show
any significant clinical and radiological deformity.
In patients at risk for IS (e.g. a family with IS history) screening for otolith functional asymmetry could
be used as predictive factor of scoliosis and help for earlier prescription of IS preventative treatment.

1
Thanks to the Cotrel Foundation (Fondation de France) for supporting this research.
2 S.R. Wiener-Vacher, K. Mazda. Asymmetric otolith vestibulo-ocular responses in children with
idiopathic scoliosis. J. Pediatr 1998 ;132:1028-1032.

[Celia]

The goal of this study was to determine if this asymmetry exists prior to the appearance of the spinal deformities.
Our preliminary results show that the vestibulo-ocular asymmetry appears before the spine starts to show any significant clinical and radiological deformity. In patients at risk for IS (e.g. a family with IS history) screening for otolith functional asymmetry could
be used as predictive factor of scoliosis and help for earlier prescription of IS preventative treatment.


I don't see the point of expensive *tests* by chiropractors if the children that go there *already* have scoliosis and as the above study points out "vestibulo-ocular asymmetry appears before the spine starts to show any significant or radiological deformity". What exactly are the chiropractors planning to do with their results ????? Brain surgery ?????

[jgd1991]

The vestibular Systems controls the muscle tone of the back muscles surounding the spine . If that system is not working symetrically, the scoliosis is being supported in negative way. Vestibular exercises have been well established and in the research. I rather have this system working with me then against me.
These are two more research papers conecting the vestibular system to scoliosis. I think they are on to something very important. I'm certainly not going to dismiss efforts being put in a direction that may help.Abstract from Scoliosis Research Society (SRS) 2003 Meeting

Matthew T. Provencher M.D., Derin Wester, Ph.D., Bruce Gillingham M.D.; Naval Medical Center- San Diego, CA. Orthopedic Research and Education Foundation- Resident Research Grant
Conclusion: A central vestibular deficit is present in scoliosis patients. Central vestibular function is worse with larger curves, and the dysfunction is opposite to the curve. Curves with location in the mid-thoracic region demonstrated less central deficit than low-thoracic and lumbar scoliosis curves. The data supports a central vestibular dysfunction in patients with scoliosis.



A study of labyrinthine function in patients with adolescent idiopathic scoliosis. I. An electro-nystagmographic study.

Spontaneous nystagmus (SN) and positional nystagmus (PN) were found in 24 out of the 47 patients with single curvatures and in only one subject in the control group (P less than 0.001).

Significant differences were observed in the caloric response between right and left scoliotic patients (P less than 0.05). The right convex patients had a sensitivity dominance in the right labyrinth and the left convex patients in the left labyrinth (Acta Orthop Scand 1979 Dec;50(6 Pt 2):759-69 Sahlstrand T, Petruson B.)

[Celia]

Vestibular exercises have been well established and in the research.


You mean eye exercises ? Where is it well established ?

[cherylplinder]

This may be a factor in scoliosis, but it is one theory of possible causes. It may deserve further study, and probably does. But should the patient pay huge sums to be the recipient of such research? I highly question, not the study, but the profit from the study. That, I think, is where Celia is coming from...

A true researcher is not going to charge astronomical sums. A true researcher rather is looking for a participant willing to take the risk to be a part of his study.
The vestibular component of scoliosis and treatment of that component of scoliosis are still under research.

I think this practice is a racket motivated by profit. It cannot cost 3000 dollars a patient to run these tests and teach the exercises. There is no documentation that these exercises do anything to help the scoliosis. Therefore, they are still experimental. I think it is highly suspect to charge such astronomical sums and prey upon the fears of the parents and patients.

When and if this is ever a well documented treatment for scoliosis, it would be ethical to charge a reasonable fee.

[christine2]

Well said Cherylplinder !!!

Dr. Rivard's Office visit was only $100. and he spent approx. 3 hours on my daughters case.

Christine

[Celia]

Dr. Rivard's Office visit was only $100. and he spent approx. 3 hours on my daughters case.

Christine


The man is a Saint! I have to agree with Christine that Cheryl made some EXCELLENT points :D


jgd1991,


Nowhere in the studies that you have referred to, does it elaborate on how to *correct* this asymmetry. You are trying to legitimize these bogus eye exercises which are totally unproven by referencing studies conducted by *true* researchers such as the Cotrel Foundation.

[cherylplinder]

Yes, Dr. Rivard is a Saint. He asks so little for his time, I am tempted to make a donation!

[jgd1991]

I have two neices in the Spinecor Brace. They both had vestibular imbalances that are being addressed with home exercises. The reason we brought them to NewYork City for Spinecor was that this was the only office that seemed to address other aspects conected to scoliosis. We also found that most of the other spinecor offices did not offer even the exercise program from spinecor. They offered testing that made sense to us. The Vestibular system controls balance and spinal muscle tone. The fees for the testing ranged from 800-1200 for my neices. This test is a well established medical test and these fees were normal for this test. I' m sure Spinecor also had this type of atitude from patients when they first came out. People were being charged for the spinecor brace and wondering why it should cost the same as a hard brace. Over time people are becoming very happy with results and are glad they found it at almost any price.
In addition, when I was in the new York office for a quartly visit recently with my neices. There was a young child that had been in for 3 months earlier for an examination and had come back for a followup. I was told that the child had a 9 degree curve and was given only vestibular exercises. The parents were expecting that she may have progressed and need a brace only to find out that her curve reduced to less than 1 degree. I was very excited for them and was real happy that we didn't try to cut corners and miss out on any possible benefits from there program.
Everybody has to do what they feel is the right thing to do. I only came on the forum with my coments because I thought people were being guided improperly.

[Celia]

Oh...you're actually a patient ??? :eek: You sounded like a chiropractor. :D These tests are medically established and necessary? According to who ? Do you have studies that show that these eye exercises are nothing but pure fiction ?

[jgd1991]

I'm at work but I found a study for you.

Role of vestibular adaptation in vestibular rehabilitation.


Herdman SJ. Department of Orthopaedics and Rehabilitation, University of Miami, Coral Gables, Florida 33146, USA.

Recovery of gaze and postural stability in human beings with vestibular deficits is well documented. The mechanisms that contribute to this recovery form the basis for the exercises used in the rehabilitation of these patients. These mechanisms include the central preprogramming of eye movements and of postural responses, the potentiation of the cervico-ocular reflex, modification of saccadic eye movements, and the substitution of visual and somatosensory cues for the lost vestibular cues. . .

I really think that this is going to be the next Ah ha. of course we should have been doing these exercises.

[Karen Ocker]

I see that one of the studies was published in 1979 from Scandinavia; are there any more than 3 such studies?
Unless other studies ---with other populations by other researchers replicate those results there is not enough evidence suggesting validity as a basis for a treatment modality. Also, were there any flaws in the conduction of those studies? There were not very many subjects.

What about this problem in blind people; do they get scoliosis? How would they be treated by these vestibular exercises?

I have actually heard about that theory before.

I also read a promising study in Poland(found on PubMed) about "syndrome of contractures" in children.
By diagnosing these contractures early and instituting early PT in these children scoliosis was avoided. The other children in the study, with these contractures, were watched and later developed scoliosis. In the 3rd part of the study PT was instituted later on and scoliosis still developed.

Sounds interesting because, during a hysterectomy last Spring, my surgeon noticed my abdominus rectus on the right was poorly developed; on the left it was normal.
This may explain why early bracing/PT works in minor curves.

Maybe the vestibular problem develops afterward???...if it really exists.


I've always had excellent balance with and without the severe scoliosis.
Chicken before the egg or vice versa???

[Celia]

I really think that this is going to be the next Ah ha. of course we should have been doing these exercises.


I think we may be on to something BIG :D So, if I have scoliosis and I train my eyes to move in a certain direction this will straighten my spine ?

[gerbo]

such a cynic, you are..... :rolleyes: :rolleyes:

[Sherie]

"syndrome of contractures" in children.


What is this Karen? I never heard of it, but I believe all these bits and pieces may someday come together to form a picture of what we can look for in children genetically disposed to developing scoliosis. My daughter who's 14, is already questioning wether she should have children for fear of passing it on. It made me sad to hear her say it, but what if they found some commonalities that children could be watched for and treated from a very early stage, then perhaps this wouldn't be a concern.

I am not sure that any of these therapies are beneficial, but I don't agree that all chiropractors who try them are out to get your last dime. I think most of them probably have a real interest in helping their patients. The chiropracors I've seen so far have been compassionate and have a real desire to help. Believe me, if the medical community had something better to offer, I would jump at it, but my daughter seems to be beyond bracing, so what are the alternatives? We could do nothing and hope it doesn't get worse or she can have surgery and be fused in her lower back the rest of her life. Hmmm....I think we'll try the alternatives first.

[dizzymom]

Whew!!!! that was alittle over my head for a while. Guess I obviously haven't done that much "research" yet. Was very interesting! I have a lot to think about.

Thanks for the info. Clear as mud..... just kidding. Now to hear from insurance and decide where to go. How long a wait to get into Montreal docs? Do they see adults? I, too, am blessed with scoliosis.

neva

[dizzymom]

Forgot to add.... maybe that's why I have always been a klutz. :D My vestibular something or another is out of wack. Could be the problem!

Would be interesting to really see more research into such things....but alas they take time and money.
Chow.... neva

[cherylplinder]

Neva,
It doesn't take long to get in to see them, usually. Just give them a call. The number is on the Spinecor website. You can also e-mail. Let us know.
If you have any trouble, I'll check and see if I can come up with another e-mail address or number. I know they are in Tuesday through Thursday; so if you call on a Friday, it may seem like they are not getting back to you very quickly.


Hugs,
Cheryl

[MATJESNIC]

Hi Spinecor Friends,

Just want to tell everyone that we met Pola and Anastasia last weekend. They are wonderful people and it was so great to spend time with them. Anastasia is doing so well. The two girls had a lot in common and I was only sorry that the get-together was so short.

I hope one day we can all meet!!



Hope everyone is doing well.

Melissa

[Celia]

That sounds so nice!! Did you guys go to a restaurant ?

I spoke to Dr. Coillard on the phone last week (her English is very good by the way) and she was telling me that I shouldn't replace the elastic bands so often. I replaced them once already and my plan was to replace them every six months. We have a follow up next month and what I might do is just get a new brace because the one Deirdre has been wearing for the last year is looking a little rough around the edges. :) Has anyone else been replacing the elastic bands ?????

[MATJESNIC]

Yes, Celia,
We had dinner together.
Yes, we replaced one or two straps because they were shot a while back. We also replaced the thigh bands because they were gross. Now her brace seems fine.

Melissa

[cherylplinder]

I replaced Rachel's at our last visit(the week before.) That was at the 8 month mark. I might get an extra set to rotate each week. It would make washing easier.
Did Dr. Coillard say why?

[Celia]

Well....we might still get the elastic straps at the next follow up visit however I wanted to get it a few weeks in advance so that any stretching that takes place would be accounted for when Dr. Coillard sees Deirdre. I'm reluctant to just pick it up on the day of the visit knowing that it stretches a little.

Dr Coillard was telling me that some centres in other parts of the world were replacing the elastic bands on a regular basis ( she didn't say how often ) and were NOT getting very good results with the brace. When they stopped changing the elastic bands, their results improved ?! It doesn't make any sense to me :confused: If the elastic bands get worn out how is that helping maintain the curves ??? Deirdre's curve is at "1" degree - we just want to keep it there ;) :D

[MATJESNIC]

The only thing I can think of is something Dr. Coillard said to me on the last visit. I said that since we wouldn't see them for 5 months, did she want us to make the bands tighter as time went on and they got loose. She said not to do that because they have found that leaving things the way they are is best. The straps shouldn't be messed with. I also remember Dr. Deutchman saying that tighter wasn't necessarily better. In fact, one time when he got no correction he said he knew he could get some correction by making it tighter. But he didn't think that was the best thing to do at that point.

But I also remember when Nicole had her last growth spurt and her curves increased and her bands were shot. We then replaced the bands.

At least your girls have some room for growth. Nicole has been "skating on thin ice" since her diagnosis. She has no more room for an increase. You know what an increase means in her case.

Melissa

[pat]

Has anyone else been replacing the elastic bands ?????

Hello! We have only replaced the crotch bands, and we're coming up on a year now wearing the Spinecor. pat

[gerbo]

It doesn't make any sense to me

neither to me, if old worn out bands work better, why not manufacture the whole thing out of old worn out bands in the first place. Are there other factors we do not know about?? Maybe thightly applied less elastic bands give more corrective forcr than tightly applied more elastic bands?? If so, the whole design needs rethinking. I am confused.........

[Celia]

Maybe someone else can give her a call and get a different interpretation on this ? I think Dr. Coillard has a clinic today.

[christine2]

We go for our 1 month re check on Monday. I will try to pick Dr. Colliards brain about the subject. I am wondering if she just does not want us messing with the bands at all to reduce human error.

Christine

We have bodysuits on order from special clothes I hope they work. My daughter is growing and the spinecor body suits are expensive. Bodysuits.com do not make her size (6 years old)

[gerbo]

the spinecor body suits are expensive

but also remember that you can do without them altogether

[gerbo]

Maybe someone else can give her a call and get a different interpretation on this

i'll try to get a reply out of mr mills

[Celia]

Hey....I just thought of something :rolleyes: Deirdre has been wearing this brace for one year and naturally there has been *some* vertebral growth. If we get the same measurement straps that we got last year when she was 43 inches tall - she is now 45 1/2 inches tall - the new straps might be too tight for her current stature size and this is why Dr. Coillard wants to see Deirdre before giving me the new straps. The old straps she has now have naturally stretched a little to accomodate her growth BUT they are still snug enough to hold her curve.

[gerbo]

and remember, regular washing keeps them thight as well (lisanna hates the washing as they all feel so much tighter after)

[cherylplinder]

I had the same thought that you did, Gerbo. It could be that the "worn out" bands have less elasticity and hold the curve better than the bands that are stretchy. Maybe they are looking for the reasons that some clinics get excellent results with the brace and some do not.
There is possibly still some fine tuning to be done.
I am still a happy customer at this point.

[gallathea]

Hi everyone.

I've been following this thread for a few weeks since we found out our six-year-old daughter has scoiosis and needs bracing. After following the discussion, doing a pile of on-line research and talking to Christine (thank you, Christine!), we decided to go for the Spinecor. We just couldn't stomach putting her in the Boston Brace for 8 years (we saw Dr. Emans here at Boston Children's and that was his recommendation.) We just got back from seeing Drs. Rivard and Colliard and Annabel is now in the Spinecor, but we have a ton of questions.

First off, some factoids: Annabel went from a 28/18 to a 19/12 right away, so that seemed promising. We found Dr. Colliard's bedside manner a bit off-putting (she basically called her fat in front of her, which I loathe given how tough it is to be a girl with a good self-image to begin with--never mind having to be a girl in a brace), but she certainly seems to know her stuff. Rivard seems like the optimist of the operation, and Sue-Ann (the technician who assisted with the fitting) was phenomenal.

Now the questions: Our biggest issue is with the crotch and thigh straps. It sounds like that's tough for a few of you. We cut out the crotch of some exercise shorts and put the body suit over that to help with the chafing, but going to the bathroom has been really hard. She gets the thigh straps wet (could they be positioned too high?). Also, we don;t get why it's okay to unsnap the crotch bands without having to put the whole brace back on, but it's not okay to take off the thigh straps to use the bathroom. Isn't it the crotch straps that anchor the pelvic base?

Any other suggestions on how to manage the underwear situation?

That's all for now, but I look forward to a long online relationshipo with you other Spinecor families.

Caroline

[MATJESNIC]

Caroline,

Welcome!!! I wish you lots of success. I agree with you about the "fat" comment. In this country, many parents are sensitive about that because we don't want our children developing eating disorders and such. I'm sure she didn't even realize she said that.

I know what you mean about the crotch snaps and thigh bands. If you undo the thigh bands, the entire brace will shift. If you undo the crotch snaps, you are okay.

My daughter has been wearing hers for a full year. She has tried wearing the brace with nothing underneath and hated it. She has tried all sorts of panties and hated that. She has always loved wearing a bodysuit with snaps. So that's what she does. I have never heard of the thigh bands getting wet. But be sure she holds the crotch snaps up so they don't dangle into the toilet.

I wish you all the best of success. Feel free to ask me anything at anytime.

Melissa

[Celia]

Hi Caroline,

Deshea also travels from the Boston area to Montreal to see Drs Rivard and Coillard. Correct me if I'm wrong.... but statistically children who are little on the overweight side do not do well with conventional rigid bracing however I don't think this is necessarily the case with the Spinecor because I recall one case of a young man who was/is "obese" and his curve corrected completely after a few years of wearing the spinecor brace. I believe his story is briefly mentioned in last year's SRS presentation.

As for bathroom issues....I'd be happy to e-mail you privately if you like.

[christine2]

Hi Caroline

try Celias private message suggestion it works for us!! My daughter needs NO HELP now. She has been wearing her brace for 1 month. We just ordered body suits with velcro from special -clothes.com I will let you know how they are.

I am very proud of my daughter at gymnastics today she was hot and took off her shirt and exposed her brace to the whole class. She did not care what anyone thought. This whole ordeal has made her more confident in herself.

Christine

[Celia]

Great news Christine !!! I'm really happy to hear things are going well and I hope it's goods news all the way on Monday.


Caroline, I was thinking about your experience with Dr. Coillard. She is such a sweet, brilliant doctor and you have to remember that English is not her native language and it's difficult for a non native speaker to know what is the "right" word is to describe a given situation or what might come across as politically correct or incorrect.

[mariaf]

In any language it is not acceptable nor professional to refer to someone as fat - particularly right in front of them. The doctor should have known better. I would be offended, as well, if it were my child.

[Celia]

Maria,

I wasn't there of course, but weight does play an issue in bracing as we all know from studies that have been conducted AND is a real "factor" in treatment. What is the politically correct way of saying "fat" in French without offending the anyone - being a non native French speaker would you know :confused:

[mariaf]

You're right - you and I were not there. The mom WAS there - and she WAS put off by it.

I'm simply stating how I see it. I probably would have been put off as well and can sympathize with this mother's feelings (as Melissa agreed earlier).

You are, of course, free to interpret it differently. I wish everyone well and don't come on here to argue with anyone :)

[Celia]

:D :D :D We're not arguing :D

[mariaf]

I'm glad :)

It sounded like you were upset at my interpretation of the doctor's comments. I'm sure whatever she meant or didn't mean by it, that she is a very good doctor. It's just that, as parents, we can all be sensitive to anything said about our child, regardless of the intent.

[gallathea]

Hey everyone:

I didn;t mean to cause a ruckus with my comments. Clearly Colliard is brilliant and I'm under a lot of stress. I just wanted to vent a bit. But from now on I'll stick to talking about brace issues.

Hope we can start on a new foot,
Caroline

[mariaf]

Caroline -

No need to apologize - you didn't cause a ruckus - we always have "lively" discussions here - but everyone tries to help..........

I wish you all the best :)

[Celia]

Maria and I have had some pretty lively discussions on other forums :D

[gerbo]

Maria and I have had some pretty lively discussions on other forums

where? I love reading these lively discussions, they are so entertaining!! :D :D

[gerbo]

Hey everyone:

I didn;t mean to cause a ruckus with my comments. Clearly Colliard is brilliant and I'm under a lot of stress. I just wanted to vent a bit. But from now on I'll stick to talking about brace issues.



I don't think you should stick to talking about brace issues at all, it is important that you can feel you can really express yourself about all aspects of what happens to you and how you feel about things. And if this results in a lively discussion, so be it.

(now, if you really want a lively discussion, tell everybody you are a chiropracter and found a cure for scoliosis. Explosive discussion garanteed!!)

[Celia]

Hey guys,

We have our appointment next week in Montreal on October 5. Is anyone else going to be there ? I'm getting the habitual "sinking in my stomach" feeling as though I'm falling into a bottomless pit and I have absolutely no control of events. Deirdre's back looks great but x-rays are more telling. Not sure if we're getting a new brace or just replacement pieces. Deirdre as usual is very excited about the train ride and has already started packing her dvd player and various dr Suess books. Sometimes we're lucky and get seating in the first class compartment and the seats are sooooo luxurious and everyone looks "tres" rich - of course I don't know what I'm doing there but it's nice to play the part. :D :D :D

[gerbo]

Is anyone else going to be there

it would be nice to meet you, but not this time, a bit of the beaten track for us


I'm getting the habitual "sinking in my stomach" feeling as though I'm falling into a bottomless pit and I have absolutely no control of events

in reality ofcourse, you are in full control, things are going well, and her back will be as straight as ever.


Deirdre as usual is very excited about the train ride and has already started packing her dvd player and various dr Suess booksHow long will the trainride take?

remember dr Suess so well from when my children were small. I am sure you will have seen the filmed versions; the cat in the hat (very good) and "The Grinch" (sublime, and so, so funny) Apparantly there is another one (something to do with piano's) but i never saw it appearing in the cinema's or as a dvd

We have been noticing last week with Lisanna's back that the ribhump looked slightly more prominent, which really is unnerving us a bit. Could be a punishment for letting go a bit over the summer, stopping the torsorotation for 5 weeks and having her out of brace for 8 hour/ day for quite a few weeks as a result of preparations for a large balletshow (which was fantastic, and she was outstanding and beautiful) Anyway, we have tightened up again and hope and pray that things remain OK

[Celia]

How long will the trainride take?

Five hours.



We have been noticing last week with Lisanna's back that the ribhump looked slightly more prominent, which really is unnerving us a bit.

Gerbo,

I certainly hope it's just your imagination! Do you know what level rotation Lisanna has ? It could be that until her rotation is addressed, her curve will not correct further.

[gerbo]

I certainly hope it's just your imagination! Do you know what level rotation Lisanna has ? .

the only measure of rotation I know of is via scolimeter, clearly very inprecise, and figures between 7-9 (degrees?) were mentioned.


It could be that until her rotation is addressed, her curve will not correct further

but there is nothing else we can do to address this (???)

[Celia]

but there is nothing else we can do to address this (???)

Adolescent curves are a lot different than infantile or juvenile curves. Rotation may be long standing and structural, there could be wedging. I'm almost certain that some amount of correction must take place even with adolescent curves but I don't know the extent. If you look at some "before" and "after" pictures of children whose curves have resolved with the spinecor brace - the little "eyes" (pedicles) on the vertebra near the apex of the curve look a lot better after the curves resolve. Another problem is asymmetric loading on the growth plates and if that stress can be alleviated -I guess that's the whole point of bracing.

[MATJESNIC]

Gerbo,

I know how you feel. Today Nicole had to leave ballet early because she had discomfort in her lower back. She was wearing her brace at the time. She said it feels like an arch. I have no idea what that means. But my husband took a look at her back and is imagining that it doesn't look good.

We are thinking about taking her to the Shriner's in Phila in the next month instead of waiting to go to Montreal in Dec.

No matter what happens, I keep telling myself that we will get through it. If her curves have increased then we are at surgery level.
I wish I could understand what Nicole is feeling in her lower back.

Anyone have any feedback in this area?

Melissa

[MATJESNIC]

Nicole has clarified what she is feeling. It is a pressure on a specific part of her lower back. Yesterday the pressure was greater. Today it is not so obvious. But when she stands up really tall with her shoulders back, it hurts on that spot. I don't know if this means anything.

Melissa

[mariaf]

Melissa,

Sorry to hear about Nicole's discomfort. Best case scenario it could just be a muscle spasm or something like that. But certainly not a bad idea to go check it out in Philly. I hear the concern in your tone and you're right, you WILL get through it, whatever it is - but you don't know anything for sure - so maybe you should go check it out for peace of mind if nothing else.

Good luck - I'll keep my fingers crossed for some good news.

Maria

[gerbo]

the pain is most likely a muscle or ligament and in its own right innocent. Obviously your concern that her scoliosis might be getting worse is relevant and this could contribute. You must worry a lot and all I can do is send you some kind of cyberhug, (whatever that means exactly)

next month or december won't make an awful lot of difference I suspect, at some stage you just want it over with and a decision made re the next step.

you're really in my heart about all this.

Keep going, it'll be ok in the end

gerbo

[Celia]

Melissa,

I can understand your fears. I always thought that pain associated with scoliosis in young children is not common. Has she had an MRI or has any doctor suggested one ?

[Celia]

Gerbo,

Deirdre's all time favourite dr. Suess book is "Green Eggs and Ham" There is another one by a different author that she really likes as well and it's called "I Know an Old Lady Who Swallowed a Fly" :D :D If you're not familiar with it here it is:

http://www.peterpaulandmary.com/music/17-07.htm

[gerbo]

Yeah, i remember that one from when mine were little.

Some of our favourites were http://www.amazon.com/Going-Bear-Classic-Board-Books/dp/0689815816, even found the text:

We're Going on a Bear Hunt

We're going on a bear hunt,
We're gonna catch a big one,
What a beautiful day,
We're not scared.
Oh ,oh!
Grass,
Long, wavy, grass.
We can't go over it,
We can't go under it,
We've gotta go throught it!
Swishy swashy, swishy swashy.

We're going on a bear hunt,
We're gonna catch a big one,
What a beautiful day,
We're not scared.
Oh ,oh!
Mud,
Thick, oozy mud.
We can't go over it,
We can't go under it,
We've gotta go throught it!
Squelch squelch, squelch squelch

We're going on a bear hunt,
We're gonna catch a big one,
What a beautiful day,
We're not scared.
Oh ,oh!
A river,
A deep, cold river.
We can't go over it,
We can't go under it,
We've gotta go throught it!
Splish splosh, splish splosh.

We're going on a bear hunt,
We're gonna catch a big one,
What a beautiful day,
We're not scared.
Oh ,oh!
A forest,
A big, dark forest.
We can't go over it,
We can't go under it,
We've gotta go throught it!
Stmble trip, stumble trip.

We're going on a bear hunt,
We're gonna catch a big one,
What a beautiful day,
We're not scared.
Oh ,oh!
A cave,
A scary, dark cave.
We can't go over it,
We can't go under it,
We've gotta go throught it!
Tiptoe, tiptoe.


OH NO IT'S A BEAR!!!
Quick!
Through the cave, tiptoe, tiptoe,
Through the forest, stumble trip, stumble trip,
Through the river, splish splosh, splish spolosh,
Through the mud, squelch squelch, squelch squelch,
Through the grass, swishy swashy, swishy swashy.
Run to the house, run up the stairs,
Oh oh forgot to shut the door!
Run back downstairs, shut the door,
Run back up, to the bedroom,
Jump into bed, pull up the covers,
WE ARE NEVER GOING ON A BEAR HUNT AGAIN!!

The most fantastic bedtime story for little ones is; http://www.walkerbooks.co.uk/Cant-You-Sleep-Little-Bear-Paperback-1844284913

how often did I read that, both in Dutch as well as english, knew it by heart eventually.......

[Celia]

Gerbo,

I LOVE the Bear Hunt! :D


Christine,

Well.....inquiring minds want to know. How did the appointment go ???? :)

[MATJESNIC]

Thanks Everyone for your caring and support. Nicole's pain went away the nest day, then last night she said it was hurting again.

Not sure what we are going to do at this time. I guess we will see how she is feeling in the next few days.

No, we have not been told to have an MRI. Nicole has seen a total of 6 orthopedics - 3 from Shriner's, 1 from Temple, 2 from Montreal. Nobody has ordered any tests.

I am trying not to be negative, but I need to mentally prepare my mind for anything. We have been "skating on thin ice" since her diagnosis a year ago. When you start with a 37 degree curve, there's not much room to play with.

I also love Green Eggs and Ham. I am not a huge Dr. Suess fan, but I do love that one!!

If you ever go to Universal Studios and Island of Adventures in Orlando, Florida, there is a section of the park devoted to Dr. Seuss. There was one ride that actually took you through the story of the Cat in the Hat. It was really sweet.

Melissa

[cherylplinder]

I feel like Nicole should have an MRI to be on the safe side. Chances are there is nothing, on the other hand, if there were any underlying causes to be addressed, you would beat yourself up for not checking.
I didn't realize tests had never been done.
Hugs. Call me anytime.
Cheryl

[cherylplinder]

Melissa,

I can understand your fears. I always thought that pain associated with scoliosis in young children is not common. Has she had an MRI or has any doctor suggested one ?

Rachel had significant pain until the Spinecor. She could not function like a normal child in the year before Spinecor. She has no underlying issues. But I agree that an MRI is necessary for Nicole. I am really surprised no one has taken that precaution before.

We are also great Dr. Suess fans. I have almost all of his books, and they are some of our favorites. Another favorite is Goodnight Moon. We loved to search for the mouse! I am also incredibly fond of Pooh bear; he, Rabbit, Piglet, Eeyore, and Tiger are just dear old friends!

[Celia]

I think an MRI can be ordered through a regular pediatrician. It's better to have the report read by a pediatric neurosurgeon because sometimes the obvious is missed when it's read by an orthopaedist....NOT that we *ever* had this problem with our ortho.

[Snoopy]

Just curious, is it routine to do an MRI on a pre-teen/teenager when they are diagnosed or is that just the standard for very young children? My daughter was 12 y.o. when she was diagnosed and none of the five doctors who saw her recommended an MRI until we were planning surgery and their explanation for the MRI was to check the size of her pedicles before surgery. I'm glad they did the MRI because it showed her pedicles were too small for pedicle screws and therefore, we knew this before her surgery.

Melissa,

I didn't realize Nicole was diagnosed at 37*. Jamie was diagnosed at 36*.

Mary Lou

[MATJESNIC]

Mary Lou,
I have never heard of an MRI being done either, unless surgery was the next step. I even asked her ortho at her diagnosis and he said she had the typical, ideopathic scoli. I guess he based this on her age and type of curve. I later asked the orthos at Shriner's and they said it was not necessary.

Cheryl,

Did you say that Rachel had one done?

Melissa

[MATJESNIC]

I just posted on SpineKids to ask other Parents of pre-teens and teens if their kids routinely got an MRI when they were diagnosed. I'll let you all know what I find.

Melissa

[cherylplinder]

Yes, Rachel did have an MRI. She is a juvenile case, though. Maybe they don't routinely order them on adolescents. But adolescents can have the same underlying causes as juveniles. One of my friends has a daughter that until recently was thought to have AIS, but with an MRI, they found a syringomyelia. IF it is not routine with adolescents, maybe underlying causes are less common for adolescents. Hmmmmmmmmmmmmmm.............

[Celia]

I find it ironic that MRI's are routine prior to spinal surgery but not before. If the "cause" of the scoliosis is detected/addressed early enough i.e., through decompression surgery or tethered cord release etc. then the scoliosis will usually resolve to some degree. Sooooo.... why would some doctors wait for the curve to progress to surgery levels and then * oh me oh my * discover that there is an underlying cause that obviously has to be addressed and then perform spinal fusion ????

[christine2]

Dr Colliard called on Thursday to reschedule. How inconvenient. We had the whole weekend planned (hotels, a dog sitter, scheduled days from work) Needless to say we are going this weekend I will up date everyone as soon as we get back.

Christine

[MATJESNIC]

Speaking of our mutual doctors in Montreal, I wonder why they didn't ask us if we ever had an MRI. Why didn't they ever suggest one?

Melissa

[Celia]

Melisssa,

I don't know. We had an MRI done with our previous ortho but I think it's standard for infantile scoliosis. There is obviously more to this that I can't possibly comprehend. Maybe the costs of MRI's are prohibitive to have everyone scanned :confused:

[MATJESNIC]

I guess if there are no other symptoms and the child is a pre-teen, they just view it as the most typical of cases. Like I said, we saw 2 from Montreal, 3 from Shriner's in Phila and one from Temple Hospital. I wouldn't be against having one done. It's just interesting that nobody has asked for one. When Nicole was diagnosed, he said her case was so standard and typical that only one x-ray was necessary. He didn't want to order a bunch of x-rays in various positions and expose her to unnecessary radiation.

[Snoopy]

You guys really have me thinking now. Like Nicole, Jamie was seen by several doctors at a total of three different hospitals and the doctor at Shriner's of Philly was the first one to order an MRI (when planning surgery), plus he also ordered a CT (or maybe a CAT scan, not sure which). So, has anyone else had both an MRI and a CT scan? I'll have to check and see if I can find out why he ordered both.

Mary Lou

[pat]

Hello all! Chiming in with my two cents! My surgery girl had her one and only MRI as a pre-requisite for surgery, and my Spinecor girl has yet to have an MRI, and she's also been seen by a few different orthos. My thought is you do the MRI if the bracing doesn't correct the problem, then it's on to surgery or find/see the "cause" for the lack of correction. pat

[gerbo]

On page 14 and 15 of this overview http://www.int-pediatrics.org/PDF/Volume%2017/17-1/pg%2013-20%20stricker.pdf
you'll find some indication on when MRI's might be indicated.

In this http://www.emedicine.com/orthoped/topic504.htm more extensive article it is stated that

MRI has been suggested to be primarily indicated in patients with idiopathic scoliosis with unusual complaints such as severe unexplained headaches and when clinical findings such as ataxia or cavus feet are present (Schwend, 1995). Routine MRI evaluation of all patients with adolescent idiopathic scoliosis is not recommended.

[MATJESNIC]

Gerbo,

Thanks so much for those articles. They were extremely informative.

Melissa

[gerbo]

you're welcome

hope you're ok and coping

gerbo

[BETall]

gerbo,

I know there has been some discussion about this, so I suggest you do a search. Also, if I remember correctly, there has been more discussion about the SpineCor on the SpineKids website. Good luck.

Mary Lou
Hi :
Please go to :SOSORT.org and info@skoliosehandlung.de for more information

[Celia]

Hi :
Please go to :SOSORT.org

I went to the website and it's very exciting !! I think it's mainly for medical professionals and not for parents of children with scoliosis.

[coloradogirl]

I am interested in the SpineCor brace, but I don't know if I want to do it. Here's why. I was in a bracing program for two and a half years when I was in my early teens and I later found out that the doctor was not really a doctor. He was a fraud and he was arrested and was charged for 117 counts of fraud. What would the chances be of these doctors being frauds too? :(

[gallathea]

When we saw Dr. Rivard, he told us that they don't even do MRI's in Canada anymore unless the upper curve goes left. He said that it never ended up being a surgical issue when the curve went right. Hope that helps.

Christine, I'm sorry you had to reschedule your follow-up on such short notice. I hope all goes well for you guys!

Caroline

[gerbo]

I later found out that the doctor was not really a doctor. ? :(

this is the problem ion the states, where every tom, dick and harry can call themself a doctor, very confusing and misleading


What would the chances be of these doctors being frauds too

Dr coillard and rivard are both "properly registered" medical doctors and specialists, no issue about that at all

Understand that you must be at least in middle/ late teens now and stopped growing. Spinecor is unlikely to be of much benefit, at least not in a therapeutic sense.

[bizzleber]

Someone above said:
He said that it never ended up being a surgical issue when the curve went right.

Which is a "right" curve -- one that's shaped like a "c" or one shaped like a backwards "c"? Mine was a backwards C at the top and I had fusion surgery many years ago. My son has now been diagnosed with a slight curve and his goes the other direction.

At 10 years old with a 10 degree curve, is it too soon to go see Dr. Rivard in Montreal?

[Celia]

Hi,

From the sounds of it, your son's curve sways to the left ? You mentioned that you had surgery for your scoliosis at an earlier age and even though the majority of scoliosis cases are deemed "idiopathic" there is an undeniable hereditary link. A curve that goes to the left in an adolescent child is some cause for concern however I wouldn't start worrying just yet. Have you seen an orthopaedic surgeon ? Do they normally see cases where curves are only 10 degrees ??? I don't know what the criteria is to be seen by a specialist. If you really want to see dr. Rivard, it wouldn't hurt to give him a phone call in advance and ask for his opinion - if you need his number, let me know. Your son is 10 years old and these things have a tendency to progress very quickly especially during growth and you certainly don't want to kick yourself 6 months from now if his curve has progressed during that time.

I saw your other post about the torso rotation machines and I don't know too much about it since my daughter is only 5 years old and hence too young to use the machines. :p

[Celia]

Christine,

When is your appointment next week ? Is it Monday ? I didn't think they had clinic on Mondays.

[gerbo]

Which is a "right" curve

A RIGHT SIDED CURVE "BULGES" TO THE RIGHT (CONVEX) AND IS HOLLOW (CONCAVE) TO THE LEFT


At 10 years old with a 10 degree curve, is it too soon to go see Dr. Rivard in Montreal

Whether you see any specialist at this stage is up to you, but at least it would give you the confidence things are monitored properly

However, it surely is too soon to worry, risk of progression with a curve of 10 degree (which could be actually less as measuring curve sizr is hopelessly imprecise) is quite small

see the following and take into account that in boys the risk is even smaller than in girls

The risk of progression is dependant on curve size and age of the patient. Premenarchal girls are at highest risk of progression. Thus a 20 degree curve in a premenarchal girl warrants careful attention, while the same curve in a girl approaching skeletal maturity has a very low risk of progression. Lonstein quantitated the risk of progression in a curve less than 20 degrees in a child with Risser grade 0-1 skeletal maturity at 22%, the same curve was noted to have a 1.6% risk of progression in patients with Risser grade 2-4. Boys, who do not have a biologic marker similar to menarche can be followed by determining peak height velocity. While generalizations are helpful, individual variation in behaviour of a given curve is common, and is affected by factors incompletely understood at present.

I'd say, dont panic, you're likely to be OK, but do keep an eye on things (with or without specialist input) "just in case"

[Celia]

... Thus a 20 degree curve in a premenarchal girl warrants careful attention, while the same curve in a girl approaching skeletal maturity has a very low risk of progression. Lonstein quantitated the risk of progression in a curve less than 20 degrees in a child with Risser grade 0-1 skeletal maturity at 22%, the same curve was noted to have a 1.6% risk of progression in patients with Risser grade 2-4. Boys, who do not have a biologic marker similar to menarche can be followed by determining peak height velocity. While generalizations are helpful, individual variation in behaviour of a given curve is common, and is affected by factors incompletely understood at present. [/I]

I've seen this famous quote many times and doctors use this reasoning to justify not bracing curves until they're past 30 degrees in some instances. While I don't agree with bracing a curve when it's 10 degrees, I think careful monitoring is appropriate. I find it odd that vertebral stapling surgery is gaining widespread support by the medical community and will be widely offered in a few years time. It's my understanding that vertebral stapling is an alternative to bracing and this *surgery* is being performed on curves as small as 18 degrees ! Now if someone were to argue bracing a curve as small as 18 degrees, they would be ridiculed.

[gerbo]

I've seen this famous quote many times and doctors use this reasoning to justify not bracing curves until they're past 30 degrees in some instances. While I don't agree with bracing a curve when it's 10 degrees, I think careful monitoring is appropriate

i think we fully agree here

[pat]

yes, curves can certainly change quickly. My daughter was a 10 thoracic and a 18 lumbar in May, and four short months later her thoracic progressed to a 33 and the lumbar to a 45! pat

[gerbo]

Pat, I know this is true, but it seems so incredible to me,( must do to you as well). Were there special circumstances to explain this??. Did she have an enormous growthspurt in those four months, any anatomical problems to take into account. Were the first xrays reliably measured? How old was she at the time?? Or is this kind of progression quite common?? (ignore my ignorance...)

[mariaf]

It's my understanding that vertebral stapling is an alternative to bracing and this *surgery* is being performed on curves as small as 18 degrees ! Now if someone were to argue bracing a curve as small as 18 degrees, they would be ridiculed.

Celia,

According to what I understand from talking at length to Dr. D'Andrea and others at Shriners in Philadelphia, stapling of an 18 degree curve is never recommended UNLESS there is another, larger curve. If a patient presents with both a 30 degree and an 18 degree curve, let's say, and they were going to perform surgery for the 30 degree curve anyway, then they might want to staple the smaller curve as well.

I have also spoken with several parents who took their kids to Shriners with curves in the low 20's, for example, and they were not advised to get the stapling even though in some cases that's what the parent and the child really wanted. One boy with a curve around 20 degrees who did not want to be braced, was even asked by Dr. D'Andrea if he could deal with bracing on a part-time basis, to which he reluctantly agreed. Dr. D'Andrea made a deal with him that should his curve progress above 25 degrees, despite part-time bracing, then she would agree to consider the stapling. The mom even commented to me that she was very impressed that Dr. D'Andrea didn't just want "another one for the record book".

I know you're not a big fan of stapling and you are certainly entitled to your opinion, as we all are. I always tell parents that stapling isn't for everyone - but it is another option for many patients - and for some, particularly teens (and I have two of my own so I can relate) they might prefer this alternative, even though it IS surgery, over wearing a brace - and that's a decision each family must make for themselves.

The point that I wanted to make is that at Shriners in Philadelphia anyway, they are VERY conservative when choosing the patients for stapling. I just wanted to clear that up :)

[cherylplinder]

Rachel's curve also progressed quite rapidly. She grew about an inch and her curve progressed from 24T/?L to 38T/18L in six months.

I would like everyone's input on a current delima. A friend's daughter had a 10 degree lumbar curve at the end of July. (X-ray done by GP and read by radiologist) I saw Caroline at that time and the curve was not visible to the naked eye. I saw her a couple of weeks ago and noticed that her hips are now uneven. She was seen by an orthopedic surgeon for the first time today. He did not repeat x-rays, but did find that her pelvis is now uneven by 3/4 of an inch. I think we are seeing rapid progression in this child, but his recommendation was to wait and x-ray again in December. What is your advice?

[bizzleber]

I've seen this famous quote many times and doctors use this reasoning to justify not bracing curves until they're past 30 degrees in some instances. While I don't agree with bracing a curve when it's 10 degrees, I think careful monitoring is appropriate.

I definitely want to do that. I'm just struggling with who to go see and what to say to my son (and how to say it without breaking down in tears and sobbing uncontrollably...). Pediatrician advised I go see the orthapedic doctor in her group, but I looked at his credentials and they don't say anything about scoliosis. How do you find the right doctor? I looked at the SRS list. But it seems just like picking from the yellow pages. I, of course, know noone in the greater New York area with this condition to trade notes with, but I'm sure there a lot of great doctors. Sorry, this is probably a topic for another forum...

[gerbo]

I am sure others in this forum can advice you who to see, so no reason to panic on that front. And really, no need to panic on any front, if he has scoliosis at all, it is minimal, it is more likely not to progress significantly than to deteriorate. If it gets worse and comes closer to the 20 degree, than you have time enough to institute treatment, which is likely to be effective. So again;NO NEED TO PANIC!

(ps, I can understand how you feel, considering what you might have gone through yourself, and this colours your response and feelings. However, this is a different person in a different time, and he'll be fine (you'll make sure!!))

[mariaf]

So sorry, Pat and Cheryl, to hear your daughters' curves progressed so rapidly in such a short time. I think it's what we all fear - and my heart goes out to you both. I echo Gerbo's sentiments that it seems incredible, but we all know that possibility exists. Did this happen during puberty? I ask because I've always been told that is the "danger" zone.

Good luck to you :)

[cherylplinder]

Rachel has juvenile. It happened when she was 9, from 9 to 10.

[Celia]

The point that I wanted to make is that at Shriners in Philadelphia anyway, they are VERY conservative when choosing the patients for stapling. I just wanted to clear that up :)


Maria,

I read the 2003 study and one patient presented with an 18 degree curve and was operated on - there were also quite a few patients with 20 - 24 degree curves. It's not that I'm not a fan of vertebral stapling because I can see how it could a viable alternative to spinal fusion - if it works ?! Maybe the criteria for candidates has changed but who is to say that some over zealous surgeon out there isn't going to perform surgery on other children with very low curves ?!!! Vertebral stapling is still *very* experimental with *no* guarantees of avoiding spinal fusion later on and who knows what kind of pain issues these children will face later in life.

[mariaf]

Celia -

I can assure you that, at least in the case of Shriners Hospital of Philadelpiha, where my son has been treated for nearly three years, they are anything but overzealous - in fact, I've seen quite the opposite. I don't know if the 2003 study you mention refers to Shriners - or what the exact circumstances were - because I haven't seen it. Perhaps, as you say, the criteria has changed but I am certain that today, at least at this facility, they do not routinely staple curves of that size - and I totally agree with you that they shouldn't.

I understand that any surgeon, in any field, could be overzealous and that is never a good thing.

That being said, I have complete faith in Dr. Betz and his team. He has devoted the past few decades to improving the quality of life for thousands of kids - not just with scoliosis but with all sorts of conditions and he's highly regarded by his peers. I also think the fact that many other doctors, who were skeptical earlier, are now at least considering this alternative says something - since the medical community is often hesitant to embrace a new procedure unless and until they are convinced it can be a viable option. Yes, the stapling has only been around for 5 or 6 years but one of the only negatives I hear so far is that there is "no guarantee". But what comes with a guarantee? Surely not bracing - but we accept that as a form of treatment.

I guess in the end it's just a personal choice which form of treatment to choose. I would truly love to see them all work for David, Deirdre and all the other brave and wonderful children!!

[christine2]

Celia

The clinic is closed Mondays. I guess they felt bad that they had to rescedule my last Appt. with little notice. We leave Saturday and are going to go to the Safari Parc Zoo 1 day to break up the trip.

Christine

[pat]

Did she have an enormous growthspurt in those four months, any anatomical problems to take into account. Were the first xrays reliably measured? How old was she at the time?? Or is this kind of progression quite common?? (ignore my ignorance...) Hi Gerbo, believe it or not, she only grew 3/4 of an inch from the 10/18 to four months later 33/45. She was 11. The more I see and hear w/scoliosis and treatment there is no rhyme or reason to it (I run a fairly large support group at our hospital); it can be the most frustrating unpredictable disease going! Maria, she hadn't started her period yet, she started it two years after the initial May 10/18 reading. pat

[mariaf]

I agree, Pat, unfortunately scoliosis IS a very frustrating, unpredictable condition!

[Celia]

I found the following article on MRI's and specifically juvenile scoliosis however, it mentions that *symptoms* are not often found prior to doing the MRI. The article is by Dr. Evans et al. I guess I should also post this in the juvenile section :rolleyes:


http://www.jbjs.org.uk/cgi/reprint/78-B/2/314

[gerbo]

celia

wishing you all the best for your first class trip and review tomorrow

(better leave early in case heavy snowfall blocks the track....)

[Celia]

Thanks Gerbo ! :D Hopefully we'll be assigned to first class seating since the curtains on the windows available *only* in first class are *absolutely* necessary since the blinding sun in the morning prevents me from reading the morning paper LOL !! :D :D :D

I was also going to comment that we're having a lovely Indian summer here in Canada :)

[cherylplinder]

Celia,
Have a great time!

Christine, how did your visit go?

Hugs,
Cheryl

[Celia]

Hey guys,

Just a quickie update... I`m waiting for our return train home as I type this. Deirdre`s curve is still at 1 degree and holding. Dr. Rivard wanted a lateral x-ray as well this time around, so we had two x-rays. We got new crotch straps and that was it! I don`t think Dr. Coillard wants us to replace the brace until next year when it`s anticipated that Deirdre will have outgrown it. I was discouraged from replacing the elastic bands and it was explained to me that replacing the elastic bands is a big no no :eek:

[MATJESNIC]

Celia,

I'm happy to hear that Deirdre is continuing to do so well!!!


Melissa

[cherylplinder]

I am not surprised at your results, but I can't believe how relieved I am. Your blessings make me feel blessed. I am rejoicing with you, because I know you are beyond rejoicing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!

Did Dr. Coillard explain the theory about the bands?

[gerbo]

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

[christine2]

Cheryl

I did post when we got back from Montreal but I will do again. Thank you for asking.

5 weeks post bracing my daughter is holding a 11 degrees, was 9 (margin of error) Dr Colliard said she looked great out of brace as well. She tightened the shoulder strap I assume to get more correction.

We are all very happy with the decisions we have made I just hope that it stays that way!!

I want to screem from roof tops early detection and Spinecor. What a great product. My daughter has not complained once about it. I fight with her to take it off!!!

We do not go back now for 5 months which makes me nervous. I called and spoke to a nurse at Childrens Hospital in Hartford CT and was told that they had another girl they are seeing wearing Spinecor.

Pat is that your daughter ? We have an appt in early December.
I was initially nervous about going there because I was afraid that I would be shamed into considering a hard brace but it sounds like Pat has paved the way for us and future kids.

Thank you to all for allowing me to vent and feel some what in control thru this. My familiy has been through alot the last couple months and being able to come to this forum has helped alot

Christine

[gerbo]

I`m waiting for our return train home as I type this. first class, or did you have to sit with the ordinary people ??


Deirdre`s curve is still at 1 degree and holding.

that's not a curve, that's straight in my opinion


Dr. Rivard wanted a lateral x-ray as well this time around, so we had two x-rays. did that give any additional info, ??anything still abnormal on the lateral??


I don`t think Dr. Coillard wants us to replace the brace until next year when it`s anticipated that Deirdre will have outgrown it.

any indication how long they think she needs to stay in the brace. Do they think she is at increased risk of developping scoliosis again at a later stage??

You must feel very chilled, relaxed and happy :) :)

[Celia]

Cheryl,

Your post left a lump in my throat, it’s so emotional. It is quite a relief that her spine is holding at 1 degree, out of brace her back looks amazingly straight. This is quite an emotional journey and we really don’t know what the outcome will be but until that day…. it’s great to have a few buddies to share our joys and disappointments.

Gerbo,

Since you asked… on the trip to Montreal the conductor usually uses one of the first class compartments for economy because they overbook by 20%. The trip is five hours long and every little bit that adds to comfort helps! It’s hard to be “fresh” after a five hour trip. Each seat in the “luxury” compartment has an outlet where portable dvds and laptops can be plugged in, not so in the economy. Yes we did get into one of the “luxury” compartments on the way there but not on the way back. As for how long she'll have to wear the brace is really a non issue for me - it's not like she's being tortured as she would be in a Milwaukee brace and for all intents and purposes is living a very normal life right now and I see no signs of psychological trauma. I think I would be more of a nervous wreck if she didn't have any kind of support. :p


Anyhoo…. in the morning since the train heads east, we see the sunrise over the lake – which was absolutely spectacular and on the trip home, the train heads in the direction of the sunset and that was equally spectacular….hey I’m trying to enjoy this journey!

[gerbo]

mmhhh, crossing canada by train, sounds like a bit of a dreamjourney to me, well, you never know, once I've done the transsiberia express...........

[Celia]

I didn't have time to post this earlier but in response to Cheryl's question regarding the elastic straps....dr. Coillard said that some European centres were replacing the elastic bands every three weeks and were having poor results. I could feel that this a very contentious issue at the moment and nerves are strained. :eek: She did say that if I really wanted to replace the elastic bands or the entire brace for that matter that I would have to come back in 1 month to have everything adjusted and I guess additional x-rays. Alternatively, they don't like the idea of shipping the elastic bands out to parents in advance since we may not know where to place things and screw everything up. So.... that's it in a nutshell!

Gerbo, I don't know why a lateral x-ray was taken but I think it does have some predictive value otherwise he wouldn't have asked for one - maybe he's looking at the kyphosis or lordosis number?

[gerbo]

I don't know why a lateral x-ray was taken but I think it does have some predictive value otherwise he wouldn't have asked for one - maybe he's looking at the kyphosis or lordosis number?

that's not like you, not to question the reason for why things are being done.


As for how long she'll have to wear the brace is really a non issue for me

I can completely understand your reasoning and your fears in this respect, however, it would be interesting to know whether the doctors still consider her at risk of developping scoliosis again. Are you confident, or are you still quite worried?

Still, the big picture is that you have really made a big difference to the life of your daughter, and you should be so proud of how against perceived wisdom you worked out yourself what was best for her, stuck to your guns, and now have the results to prove you were right all the time. Keep going!! :) :)

[Celia]

Thanks Gerbo! What a sweet thing to say!!!!! :) We're all trying to do the very best we can and I'm grateful to doctors such as Min Mehta, Dr. Rivard and Dr. Coillard who are making it possible for children to live/lead better lives....if not for them I don't think Deirdre would have done so well. I shouldn't forget the doctor who made it possible for Deirdre....Dr. Hedden the greatest doctor in the world !!!!

I already know why the lateral x-ray was necessary so I didn't have to ask :D :D :D :D

[Mom37]

I wanted to thank all for your ears and advice! If I hadn't told you, Shriners in Erie, PA said no brace will hold our daughter's curve, and she will eventually need surgery, but that it Spinecor was as good as any. So we went to Scottish Rite in Dallas for a 3rd orthopedic opinion due to rapid progression of the scoliosis to get our foot in the door if spinal surgery becomes needed. Dr. John Birch was terriffic. We will continue our orthopedic needs there should fusion surgery become needed. With my daughter's high thorasic curve, an MRI was ordered. She has a cyst in her spinal cord, a syrinx, and her diagnosis is Syringomyelia and Chiari I malformation. Great resource is www.asap.org. We were referred to see a neurosurgeon at Childrens Medical Center in Dallas by Scottish Rite. Their first date was Nov 27th, so we got the pediatrician to refer us to Cook Childrens in Ft. Worth, TX sooner. We have seen the neurosurgeon at Cooks yesterday and Chiari surgery will be needed before the end of the year. Scottish Rite got Children's to work us in sooner on Nov. 7th for our second opinion. doctor in We are continuing Spinecor for now as we want the curve to hold from further progression as long as possible as no guarantee the surgery will help the scoliosis from progressing, but is probably the cause of the scoliosis. We know Scottish Rite doesn't support Spinecor either, but they are also not sure a hard brace will help either like Shriners. Thanks.

[Christina_in_NC]

I tried to catch up on your history but I didn't see what your daughter's curve is. Did they think the Spinecor would not hold it because the curve is too high, or because of the other complicating issues going on with it?

[Christina_in_NC]

We saw a surgeon yesterday, he measured the upper curve (which the last surgeon did not do) - 36 degree thoracic curve and 32 degree lumbar. I am trying to get an appointment at the Shriners in Erie to decide between SpineCor and Boston.
Do any of you who are using SpineCor have upper curves in that range and does it seem to be helping at all? With this new data we are not quite as certain anymore about the SpineCor.
Our surgeon here would rather us get the boston if she is willing to brace at all, but he said if we got Spinecor he'd still be happy to follow her for us. We go in December for a second x-ray to check progression and would love to get a spinecor asap so we can see if the in brace correction is worth going with that brace.
Thanks,
Christina

[LATigner]

My daughter (now 16) got Spinecor at age 15 & 3 mo. Basically she was already done growing (Riser sign 4-5). Both curves were in the low 40's. With the Spinecor brace she got 10 degrees of correction after 1 month of wearing (5 degrees initially). This was with wearing the brace only about 10-12 hours per day rather than the 20 hours. Unfortunately, she had already done hard bracing earlier and was not willing to wear the Spinecor the amount of time she really needed to. So we are back to curves of 44 & 44, she is wearing the brace at night only and the curves are holding. I will tell you it is night and day with respect to comfort and compliance. I believe if we had gotten the Spinecor when she was 12 1/2 (first diagnosed) there would have been no issues with wearing it. Aside from comfort & invisibility (which is huge to a teenager) with Spinecor you are re-educating the soft tissues (muscles, tendons, ligaments) so that there is a much better shot at retaining the correction you get. With hard braces they only hope to slow the progression & usually the curve reverts back to wear it was after the hard brace is discontinued. If it were my child, I would absolutely go to Montreal & get their opinion.

[cherylplinder]

Christina,
My daughter Rachel's curve progressed by 20 degrees last year(from 18 thoracic in January to 38 thoracic in December.) She turned 11 September 28th, 2006. We traveled to Montreal in January of this year and put her in the Spinecor brace.

Her first x-ray in brace was 31Thoracic/ 19 Lumbar, the day of the fitting. In April, her curve was 23T/22L in brace. In August, her curve was 20T/18L in brace. She has grown at least three inches since she got her brace in January. By contrast, the year her curve progressed so much, unbraced, she had only grown a couple of centimeters(about an inch.)

She was in a lot of pain in 2005. She could not function normally. She couldn't play for very long without coming in with her back hurting. She couldn't sit at the paino more than 10 to 15 minutes without being in pain. She is now completely pain free. This brace has been amazing!

I was told by Shriners in April that Rachell had a 100% chance of surgery. That is correct according to the literature, but the literature is based on traditional bracing, I am certain. So far we are beating the odds.

I have the highest regard for Dr. Rivard and Dr. Coillard. They are some of the most amazing physicians I have ever met, with consumate integrity and compassion. I would not hesitate to go to them.

[MATJESNIC]

Cheryl,

I hope Rachel continues to do well with Spinecor. Nicole's curves always increased with growth spurts. We don't know what will happen now that the major spurts are probably done.

Question for you Spinecor Parents out there. Do your kids complain of back hurting without Spinecor on? Nicole's back feels fine with brace on but when walking aroung the mall without brace (going dress shopping for example), her back hurts and she can't wait to put it back on. This does not seem too encouraging to me. I will talk to the Docs in Dec. when I see them.


Melissa

[Mom37]

I tried to catch up on your history but I didn't see what your daughter's curve is. Did they think the Spinecor would not hold it because the curve is too high, or because of the other complicating issues going on with it?

My daughters curve is in the upper thorasic, almost cervical area. The curve is in the upper 40's out of brace. That is why an MRI was ordered as her curve is a high thorasic curve, and not quite typical of ideopathic scoliosis. Her Chiari, and Syrinx is the believed cause of the curve, and the believed cause of the high progression. We are still using Spinecor, as we want to reduce the chance for a rapid increase. Andrew Mills, head of Spinecor, and great orthotist, came from out of the country, and did our first "adjustment" to the brace at 1 month. He was very happy with the bracing, and said he would have done the same. I really think Spinecor is the best brace out there. I would certainly find out what you can from Shriner's in Erie, PA. If we were unable to PA, they were going to do an evaluation by us sending in films and getting back to us. I think that is a great alternative to the trip, if it is hard to get in, or go there. We were told to get a Boston brace, but many Orthopedic Surgeons do not know about, or enough about Spinecor. Shriner's doctor told us Spinecor was as good of a brace as any, but just not sure any brace would hold hers. I found the staff helpful at Erie, just make sure to schedule when the orthotist for Spinecor is there if you go in person. Then confirm before you leave that the orthotist and brace is going to be there before you make the trip. That the orthotist is still going to be there is the one thing I forgot to reconfirm and he wasn't there to check and adjust her brace. I didn't agree to just not continue a brace, and since we already have it, we are certainly not going to just stop and give in without a fight. We went to Scottish Rite in Dallas, still planning to use Spinecor. We just wanted to be an established patient if fusion ever becomes necessary, and as a third opinion. We really liked Dr. Birch there. I am seeing more hositals and doctors on that Spinecor list in the U.S. and I believe that the benefits are worth using Spinecor. We plan to use after Chiari surgery if possible. Hope this helps.

[cherylplinder]

In the first couple of months, Rachel's back hurt when she was out of her brace for very long. In August, we went camping. Rachel was out of her brace for extended periods of time, often several hours at a time more than once a day. Her back did not hurt. I found it very encouraging. She never complains of back pain anymore.

[cherylplinder]

Just an encouraging word..........

One of my friends commented tonight that she could see that Rachel's posture and alignment were much straighter.
That is the first time any adult has commented that they had noticed that she was not straight or that they had noticed the improvement.

The kids in her Sunday school class had noticed and asked her about it last year. Her shoulders were noticeably uneven, by an inch or more. They are now completely even.

She is growing like a weed!!!!!!!! An inch in the past few weeks!!!!!!!

[Celia]

Cheryl,

This is such great news!!!! I'm glad you mentioned the leveling of the shoulders because Deirdre has a left "C" curve and the straps push her in one direction - to the right. At the last clinic appointment I noticed a little kink above her curve going in the opposite direction - to the right. There is still some rotation to her spine so I guess that's why the kink developed. Dr Rivard assured me that this is strictly postural and I'm hopeful *praying* :eek: that over time everything will balance out. We were give a different size #4 strap (40 cm versus 50 cm) so that her right shoulder wouldn't tilt so much to the right. The different size strap seems to be doing the job because her shoulders are now level whereas before her right shoulder was significantly higher than her left and I wrongly thought that this was "normal". Anyway...I thought I would mention this so that others could keep a heads up for potential problems developing in their own children. This is purely an FYI and keep in mind that each case is unique so what may apply to Deirdre may not apply to anyone else - remember this is an art not a science.

Here is a picture of Deirdre wearing the spinecor brace taken before our trip to Montreal and you can see how the right shoulder is higher than the left. Still....she looks like such a sweetie doesn't she :p

http://i41.photobucket.com/albums/e251/sealy25/Picture004_edited.jpg

[pat]

Yes, she is a cutie!!! Thanks for shoulder and different size strap info; we head up next month for our next appt; it's been a year now! p

[cherylplinder]

Yeah, she's a doll!!!!
I think Rachel's strap may be pulling her right shoulder a little lower than the left. Before, her right shoulder was higher than the left, and I thought that maybe it was desirable for the left to be higher than the right slightly to correct her curve. She has grown since her appt. I don't think it was that way right after her adjustment.
I have been wondering, as fast as she is growing right now, if I should take her back before January. She has put on almost 2 inches in the last 2 months.
Any input would be welcome.

[Celia]

Cheryl,

Wow !!! Rachel has grown 2 inches since the last appointment?! Wasn't that in August ? She's right in the middle of the growth spurt. I would contact Drs Rivard or Coillard and make sure that everything is O.K. - they have your daughter's profile on the computer. I know that the spinecor works on the principle of postural disorganization and that any kind of disorganization that occurs should be temporary..... I think :rolleyes:


Pat,

Good luck next month and know that we're all sending you our best wishes for a good uneventful appointment. :)

[gerbo]

lisanna's right shoulder is deliberately pulled down to help to correct her (Right T11) curve

[Christina_in_NC]

CherylPlinder and Mom37,
thank you so much for the info. It is very helpful. At this point we have an appointment at Johns Hopkins because it is easier to get to for us. We may yet change that.
Rachel sounds like she is doing great!
Christina

[cherylplinder]

Christina,
I corresponded with Dr. Paul Sponseller in the beginning. He was very kind. Because Rachel is plump, he was unsure about putting her in the Spinecor. That is when I contacted to Dr. Coillard to ask if the biomechanics of the brace would be affected by that. Dr. Rivard called me within hours and encouraged me to let them take a look at her. The biomechanics of the brace and outcome do not seem to be affected by weight as with the TLSO or Boston.
And I am quite encouraged by Rachel's progress. I am beginning to be hopeful that we might avoid surgery. But even if we don't, she has been extremely comfortable in the brace. When her back hurt her so much at the beginning of the year, she was reluctant to take it off because she would begin to hurt when it was off. She is now pain free even out of the brace, so that would have been worth it all.
She has also achieved a much better alignment of her body. She used to have one foot that turned out. It made her walk funny. The brace corrected that also. I was really amazed by that. It had occurred to me, in the beginning that the two might be related, but our orthopedic surgeon at that time dismissed my observations about the change in her foot corresponding with the change in her curve(it had not always been turned out.) I trusted him and therefore I had mentally dismissed it. A few months into the Spinecor, I noticed that her gait was greatly improved.
Anyway, if she takes a turn for the worse, I still have absolutely no regrets and am very grateful for all this brace has given us.
She was absolutely miserable in the TLSO. She couldn't move. She was hot. Of course, since the TLSO did not correct her curve at all, she only wore it until she had her first in brace x-ray, about a month. We had no other choice but to consider other options. I am so glad of that now.
Best of luck.
Hugs!
Cheryl


Gerbo,
Thanks!
Cheryl

[MATJESNIC]

Deirdre is a cutie.

I'm happy for all of your daughters who are doing so well with Spinecor. Although I don't know if Nicole will avoid surgery, I will never have any regrets about my decision to go with Spinecor. I would not, could not have put her in the hard brace. If her curves are evil and uncooperative, it is not Spinecor's fault. I have even convinced Nicole of that. She was going to burn Roxy (her Spinecor) in the fireplace if it didn't work. Now she has changed her mind because she knows Roxy is doing the best job she can. Yes, we are all going nuts here. Roxy even "talks" and has a very interesting voice and unique language. It sounds a little bit French and a little bit of other dialects mixed in. Hey, whatever helps you get through this, right?

Melissa

[gerbo]

It sounds a little bit French and a little bit of other dialects mixed in. Hey, whatever helps you get through this, right?

:D :D :D :D

[Celia]

Melissa,

I'm laughing my butt off ! :D :D :D Actually....I find French accents very sexy. :D

[gerbo]

Lisanna had 3 month review with mr mills yesterday, I wasn't there, having booked an evening in the theatre with my son ages ago (bloodbrothers, fantastic musical set in Liverpool, won't mean anything to non british I suppose, lead woman was played by now elderly lady who in the 60's was leadsinger of the "New seekers" singing "I'd like to teach the world to sing, in perfect harmony", quite a famous tune at the time, and amazing how 30-40 years onwards her voice stil sounded exactly the same, anyway, i am digressing)

this was just spinecor adjustment, no x-rays, but reports were that mr mills was very happy, thought she looked good and measured her at 5 degree with scolimeter, (nothing to do with Cobb angle of course) lower than last time and according to him a level where you would consider not to treat yet if you would present first time.

As I have said myself before, scolimeter is a rather inprecise instrument and one must not get to obsessed with numbers, but still, it was a bit of a relief knowing that nothing appeared worse, considering she is growing a fair bit (25 mm in 3 months) and over the summer we had been rather easy going on the wearing of the brace

Encouraging, is what you call it, and most importantly, she is such a happy girl in the spinecor, compared to when she was in her hard-brace........ :) :) :) :) :)

[Celia]

Gerbo,

I've noticed within the past year or so that Lisanna only had x-rays at initial fitting, have you requested no x-rays or something ?? If so, how did you get away with it ? :p

Congrats on the level 5 scoliometer reading !!!!!! Deirdre' was a 4.5 so I'm quite pleased too. There was a study in pubmed and the authors were dr. Rivard and Coillard and it dealt with monitoring scoliosis with scoliometers vs x-rays and I'm wondering why Deirdre had both ????? I would prefer less exposure to x-rays. The study is here:

1: Eur Spine J. 2000 Dec;9(6):516-22. Links

Relationship between gibbosity and Cobb angle during treatment of idiopathic scoliosis with the SpineCor brace.Griffet J, Leroux MA, Badeaux J, Coillard C, Zabjek KF, Rivard CH.

Department of Child Surgery, Faculty of Medicine, University of Nice-Sophia-Antipolis, H pital de l'Archet, France. griffet.j@chu-nice.fr

The objective of this study was to quantify the relationship between gibbosity and spinal deformation expressed by the angle of Cobb before and during treatment with a brace for different classes of idiopathic scoliosis patients. As part of the standard treatment with the Dynamic Corrective Brace (SpineCor), 89 idiopathic scoliosis patients underwent an initial radiological examination and gibbosity measurement with a scoliometer wearing and not wearing the brace. The 89 patients were classified in relation to the apex of the scoliosis curves: thoracic (n = 29); thoracolumbar (n = 40); lumbar (n = 7) and double (n = 13). With the dynamic corrective brace, the patients showed a mean decrease of 8.3 degrees for the major Cobb angle, and a mean decrease of 2.3 degrees for their gibbosity. There was a significant positive relationship between gibbosity and Cobb angle with and without the brace for the thoracic and thoracolumbar curves. A linear regression analysis identified a small mean estimation error for the thoracic curves (7.4 degrees no-brace; 2.7 degrees with brace) and thoracolumbar curves (5.2 degrees no-brace; 5.3 degrees with brace), indicating a predictive potential of the scoliometer. The measure of gibbosity with the scoliometer provides a fairly reliable estimation of Cobb angle at the initial clinical examination of a scoliosis patient. However, when initial Cobb angle and gibbosity are considered, the measure of gibbosity when wearing a brace provides the clinician with a highly reliable estimation of the Cobb angle while in a brace. This relationship also exists for the follow-up with a brace, permitting a judgement of the patient's evolution under the treatment with SpineCor.

PMID: 11189920 [PubMed - indexed for MEDLINE]

[gerbo]

I've noticed within the past year or so that Lisanna only had x-rays at initial fitting, have you requested no x-rays or something ?? If so, how did you get away with it ? :p

she actually did have an in and out of brace PA on assesment and in brace PA at 3 and 6 months, this was the 9 months visit where xray was not needed, all according to protocol. Next review, the 12 months one, apparantly includes in and out of brace x rays, although i would be inclined to ask for an inbrace one only as I cannot see the relevance of an additional out of brace one, it won't change the management as far as i can see.

we actually have been having three different methods being applied at the same visit at 6 months; xray, scolimeter and q-scan. Somehow the non-radiation methods only make sense if they reduce the dependence on x-rays.

still, lisanna was such a happy girl yesterday, i think she'd sensed our worry and now also felt the relief that we are still on track......

[cherylplinder]

Congrats Gerbo!
I'm so happy for you. I assume the 5 degree scoliometer reading was out of brace?
That's fantastic!!!!!!
Hugs,
Cheryl

[gerbo]

mmhhhh, no, it was in brace, and only 1 or 2 degrees lower as on previoius readings (so hardly statistically significant). Still ,currently i am mostly interested in in-brace inprovement, (as that gives a good indication of eventual out of brace outcome, I think)

feel quite confident at the moment, so thanks for being happy with me :D :D

[cherylplinder]

Well, I was just hoping for the 5 out of brace for you. Rachel is 10 to 11 out of brace and 6 in brace, so really, it makes me feel more comfortable with where she is. I was anxious that her rotation at her first fitting out of brace was 6, and in brace was 0. The next visit, it was about 3 in brace. The next visit it was 6 in brace. That progression was bothersome, but her x-rays were undeniably better, so I felt hopeful. Dr. Rivard and Dr. Coillard have been unconcerned with the change.
Rachel's rotation looks so much better in brace than out of brace; it's amazing. You can really see what her brace is doing. That is how I check every week to see if her scoliosis might be progressing. As long as her rotation seems to be staying the same in brace, I feel like she is alright.
Happy days for you! Me too!
Hugs!
Cheryl

[Christina_in_NC]

Cheryl,
Thanks.
We are going to see Dr. Sponsellor Thanksgiving week. It feels like a long way off. The orthotist said she'd like to see better than a 10 deg. in brace correction to suggest that the Spinecor might work. Dr. Sponsellor has been wonderful about returning e-mails and his staff has been very helpful.
In the meantime we are going to start torsion/rotation exercises and continue PT.
Christina

[MATJESNIC]

Gerbo,
It sounds like your daughter is doing well with Spinecor. I am sharing in your happiness. Even though we are supposed to go to Montreal in Dec., I will see if we can go in Nov. We haven't been there since July.

Melissa