spinecor

[Celia]

Has anyone noticed that the shoulders in the Spinecorporation case studies are all level????? In case #1 , the patient started out with a 38 degree curve and the shoulders were level more or less throughout treatment? Does anyone know whether the shoulders should remain level? I know twisting is involved for the corrective movement - how about uneven shoulders? I think what's causing the problem in Deirdre's case is the right shoulder is being pushed higher than the left and things look very asymmetrical. The slightest imbalance to posture can throw the whole spine off and start a vicious cycle. I was looking at the Spinecor Manual on the SRS website (refer to
P 9-10) and it doesn't look as though there should be a shoulder tilt for Deirdre's curve classification which is T8/T9. The shoulder tilt is reserved for high thoracic curves located near the neck. It looks as though there should only be detorsion of the shoulders and thorax and this is why we're getting this crazy stuff happening to the neck area.


http://www.srs.org/professionals/bra.../section13.pdf

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

[jillw]

I'm new here....

Hello,

My daughter, Katie, was diagnosed with scoliosis two weeks ago (just a couple days before her 7th birthday). As many of you can relate, I'm sure, I am heartbroken. In any case, the idea of her being put in a Boston or similar brace for the rest of her childhood and a decade or so (and still having to worry if it will progress to surgery anyway because she has so many of years of growth ahead of her) is an overwhelming thought.

For the first week following the diagnosis I was up all night every night trying to learn as much about scoliosis as I could. I have read almost all of the posts in this this thread (that took several nights! ) I am so hopeful that something like Spinecor might work for my daughter and in some ways she seems like she might be an ideal candidate at this stage. I have followed the journies you are all going through with hope and have felt your victories and disappointments.

Because I read so much and because I am still a bit sleep deprived, I don't remember each of you by name yet so I am very thankful to those of you who posted signatures that summarized your situation!

Melissa, I am thinking of you and I wish Nicole all the best with her upcoming surgery.

My daughter enjoys dancing as well so the concept of being able to move while braced is attractive to me as well (not to mention it just seems to make sense that a torso at work would be better off than a torso that was restricted for a decade or so). Gerbo, I too have wondered it if comes to surgery what kind of ability to dance would be there later. Although my daughter isn't a serious dancer at this age yet, she seems to enjoy it more than sports such as soccer, softball etc ; it seems to be her favorite way to keep physically busy. She was invited to join the competition tap/jazz team this year and it seemed to me like dance was emerging as a primary interest (but she's still so young that I don't know if that would change?) And I had to smile because I, too, was thinking that Irish Step dancing might be more conducive with a stiff brace or surgery!

Cheryl, Katie seems to be where your daughter was at the beginning...she has a 17 degree thoracic curve with a "small compensating curve" from T4 to L2. That is all I was told so far and I'm not sure if that t4 - L2 reflects the primary curve only or both curves? I have since contacted the orthopedist to find out where her apex is and the measurement of the second curve, but he was on vacation last week and I haven't heard back yet. She just had an MRI yesterday to (hopefully) rule out any other cause such as neurofibroma, etc) ANYWAY, I see that Rachel's curve jumped up to the high 30s when she was 10. Would you mind telling me what happened in those years? Were you "watching and waiting"? Was she in a different kind of brace? Did it grow gradually or did it maintain and then jump up quickly?

Our orthopedist is referring us to the Shriners in Springfield, MA (Dr. Masso?). I see that the Shriners in Erie will fit for Spinecor...does anyone know if they do enough of it to be "good" at it?

Also, I saw the most recently published results with spinecor but in that study they specifically EXCLUDED those they treated/were treating with juvenile scoliosis from their results. Has anyone seen any sort of data related to results for those with juvenile scoliosis that were treated with spinecor?

Well, although I have other questions, I see my post has gotten very long so I suppose I should sign off for now. But I also wanted to say thanks for getting me through some very long sleepless nights!

Jill

[cherylplinder]

We were watching and waiting. Rachel was not braced from 7 to 10 years of age. Her curve stayed in the 17 to 18 degree range for 3 years before jumping 20 degrees in 1 year(2005)
I asked for bracing at 17 degrees and the ortho told me that bracing would weaken her trunk muscles and make the scoliosis worse. The Boston or TLSO would weaken the trunk muscles. He was completely uninformed about the Spinecor brace and could have cared less when I told him about it after the Boston did not correct her any and we were looking for treament alternatives.
If you have any other questions, fire away. My e-mail is cherylplinder@hotmail.com, if you get tired of the constraints of this forum.

[rtremb]

Jill:

I am new to this forum too.

Our daughter Esme's curves progressed from T17, L18 to T40, L38 in eighteen months when she was 11 - 12 years old. We were not warned by the doctor her curves could progress so quickly. She grew 3.5 inches in the eighteen months which, we were told, is why her curves advanced so fast.

Her brother has scoliosis too but the pattern of changes in the curves was very different for him.

Had we known about the Spinecor brace we would have encouraged her to wear it much sooner when her curves were much smaller. The Spinecor brace was never mentioned by the doctors at the hospital here in Ottawa even though we live only one hour from where it was invented!! Needless to say we are not too impressed that the only option we were given was "hard shell" bracing.......anyway, we are now going to Montreal to see Dr. Rivard at the end of September to get a Spinecor brace for our daughter.

I hope if your daughter has to wear a brace she can wear the Spinecor which will not impede her ability to continue dancing.

Ruth Tremblay, Ottawa, Canada

[Celia]

Hey Ruth A fellow Canadian!!! I was feeling kind of lonely being the only Canadian on the Spinecor thread. Ottawa is not far at all from Montreal so it should be really easy for you.

Jill, I've heard really good things about Dr. Sanders and he's tops as far as I can tell....however I've heard some conflicting information about the orthotist that does the bracing for him. I don't know if it's lack of commitment to the craft but there was one child whose curves actually progressed on initial fitting which is weird when you think about it. The nice thing about getting the brace through Erie is that it would be free of charge.

[MATJESNIC]

thank you, Jill and I wish you good luck with your daughter. What area do you live in?

[joannemadden]

Shoulders and headaches

IN August we took my daughter Megan to Montreal for her first post brace check up. She had a growth spurt (height) and was basically the same...no better, no worse. They didn't give us much information besides that, which was disconcerting. We are I guess more accustomed to having more details about progress, etc.
Anyway, Dr. Colliard did adjust the brace and tightened the shoulder area considerably. When we left Megan had an extreme headache, and now sometimes has headaches. We also noticed that the shoulder portion seems pulled down and her torso appears more twisted.
Any thoughts from anyone....experience with this?

[rtremb]

Joanne:
I'd go back to the hospital to get the brace checked - your daughter shouldn't be having headaches.
It is really good that your daughter's curves didn't increase when she had a growth spurt - the Spinecor brace must be working?

[christine2]

Hi Celia

My daughters shoulders are definatly uneven. She has also had some muscle spasms in her neck. I have brought it to Dr. Coillards attention and she is not concerned but I am keeping on top of it.

Jill welcome, this is a great group on parents.
We go to Montreal and are VERY happy!! We drive 7 hours one way but I find it is well worth the trip. I do not in any way question their dedication to helping my daughter. It seems to me after the research I have done that at your daughters age she is an ideal canadate for spinecor. If you have any ? as to the capabilitys of the doc you are looking at perhaps you should call Dr Rivard in Montreal. He will tell you if he is comfortable with this docs abilitys. Dr Rivard is very easy to talk to and will give you his honest opinion.

[Celia]

It's interesting that a few of the kids are getting headaches. I can only speak from personal experience but I'm almost certain that the shoulder tilt is what's contributing to the kink on the vertebra, headaches and muscle imbalance on the upper right hand side. A year and a half ago dr. Rivard assured me that it was postural and maybe it was at the time but I fear that if this problem isn't addressed soon enough that it will become structural and then we'll be dealing with a high thoracic curve which is not so easy to treat. At this point in time, the problem seems very easy to correct and that is to keep the shoulders level. I'll have to phone her next week and discuss this with her.

[momw/scoli]

A Big Thank You!

I say ditto to everything Jill said. I wish I read all the posts before my daughter was fitted for a Boston Brace. My DD never mentioned Spinecor and when I asked him about it he said it wouldn't work.I think if we had started with the Spinecor my oldest daughters curves might have stayed the same. If my girls get fitted for the Spinecor I plan on calling the local newspaper and getting the word out about other options. I am traveling 10 hours from one end of Texas to the other end. Does anyone go to Dr. Marco in Houston? That's the best option for us. Montreal is just too far. Tell your Doctors there is a mom in Texas who wants to hug his neck for inventing something to replace plastic "torture chambers" or "Lucifer" as my daughter refers to her brace.
Melissa, I think everyone who reads these posts will be praying for you and your daughter on Sept. 12.

Becky
Mom to Brandon 15, Emily curves of 36 and 38, and Callie 9

[RugbyLaura]

Hi Gill, Ruth & Joanne,

Welcome to the Spinecor thread. I don't know what I would have done without it over the last few months. I wish you all luck with your Scoliosis Journeys (and everything else in life!). I only found out about Spinecor through this forum and dread to think how life would be without it. I know this sounds melodramatic but we have the rigid brace at home too & Imogen's life would have had to change enormously; she would have lost regular contact with many of her friends (through stopping dance).

Gill, whilst it's horrible that Katy has Scoliosis it's fantastic that you've caught it so young and with such a small curve. I only wish we had. I thoroughly recomend Spinecor and hope Katy enjoys the competition team.

Ruth, I hope Spinecor can help Esme. As you'll know from reading this thread, we're in a similar situation.

Joanne, Imogen doesn't get any headaches but her shoulder is pulled down and back. Mr Mills says this is part of the treatment, but I will follow it up at our next appointment in 2 weeks.

Thanks everyone else for you input re time out of brace. It really helps to hear about other peoples lives with Spinecor; helps us to feel "normal". Most other things in life we'd discuss with our friends and share experiences. It's great to have found some new friends who understand this particular issue!

Thanks, Laura x

[Sherie]

I am traveling 10 hours from one end of Texas to the other end. Does anyone go to Dr. Marco in Houston?

Hi Becky

Here's our story: I took my daughter to Dr. Marco to be monitored. She'd already been fitted in the Spinecor by Dr. Smouse here in Houston, he's a chiropractor. Dr. Smouse has been using the spinecor since 2003 so he has a lot of experience and was the only one here in Houston until last year. The only problem with Smouse is he put my daughter on a very expensive therapy program that wasn't doing anything at all, after 3 months of that and no improvement, we quit seeing him. I didn't know what to do at that point then I looked at Spinecor's website and noticed Dr. Marco had also started using it. We were their first patient to be seen with the brace. Dr. Marco used Dynamic Orthotics to actually fit the brace, that was a separate appointment. We saw Dr. Rigo at Dyn. Orth. and he adjusted the brace after studying it, I was very impressed with him then we went back to Dr. Marco for follow up xrays. I really like Dr. Marco, he's not pushy about surgery and will listen to your concerns. Unfortunately, the brace wasn't successful, I believe my daughter's scoliosis was too far advanced when we started it.

Basically, there's an initial consultation, the brace fitting and follow up xrays (3 separate appts on 3 different days for us). Are they going to do that all in one day since you're travelling so far? You might want to check, sometimes the people who make the appts. don't realize these things.

Good luck, let me know if you have any more questions.

[rtremb]

Sherie:
What were your daughter's angles when you first got the Spinecor brace?

We have an appointment on September 28th to see Dr. Rivard when he will decide whether to let Esme have the Spinecor brace - this decision will be based on whether he thinks it will work for her or not.

It is really hard having to wait so long before we can see him (especially for Esme) - think I'll call on Monday and see if they have a waiting list for cancellations since we are so close!

[Sherie]

Ruth,

Sheena's curves were about T33, L43 (I didn't take good notes but I know for sure the lumbar was that and they're always about 10 deg. apart). There was only a few degrees correction on the initial fitting, I think that's probably a good indicator of wether the brace will work or not, most of these kids are getting good correction on the initial fitting. At the 3 month mark, there was still no correction, after that, we saw it steadily progressing even in brace.

In hindsight, I would have made that trip to Montreal for the initial fitting to make sure it was done properly but I didn't really know better at the time and Dr. Smouse is just a 15 minute drive from my house, so it just made sense to see him.