spinecor

[gerbo]

ruth; be prepared that the best you can expect is to "buy some time" prior to surgery by using the spinecor, the chance it will give any substantial improvement is small. Surgery is not a disaster or failure; it is a blessing that with todays technology these things can be succesfully put right.


melissa; hope you and nicole and other familymembers are ok

celia; i am just back from little trip to holland; parents had their 50 year golden wedding anniversary on 26/9; big party, great fun, son played beautiful piano and l danced for guests, very touching...

cheryl; we are so much in a similar situation; keep your head up, girl!!

generally; re in/out brace xrays; the protocol states yearly in and out of brace xrays with in brace xrays in between, one wonders how much this is out of clinical necessity and how much this protocol is driven for research reasons.

strictly speaking, as long as everything is stable and under control in the brace you can hardly see anyreason to do out of brace xrays as the experience is that the eventual outcome of treatment is predicted by the extend of the curve whilst being treated (i.e.; in brace) (this is assuming that published evidence is correct)

I think that once things are not under control, or when you worry whether (certain aspects of) the treatment could actually be harmful, it becomes more logical to ask for out of brace xrays

in this context, we will be asking for one as we worry we have lost control, and we worry that the brace is exacerbating the 2nd curve. For similar reasons, i think celia should ask for an out of brace picture next time, but then, knowing her, she will make up her own mind about this

[Celia]

..in this context, we will be asking for one as we worry we have lost control, and we worry that the brace is exacerbating the 2nd curve. For similar reasons, i think celia should ask for an out of brace picture next time, but then, knowing her, she will make up her own mind about this

Generally, I just follow directives.... I honestly am feeling very good about the latest x-ray. I was looking at the vertebrae from L5 to T9 and they're all lined up nicely like little ducks in a row - it's such a sight to see! Her rib cage is expanding and growing by leaps and bounds, I think the little aveoli keep multiplying until the age of eight so we're doing good and I don't think this would ever have been possible with a confining TLSO. I don't regret my decision to go with the spinecor brace at all! I'm so thankful to drs Rivard and Coillard. I love them both.

[Celia]

Gerbo,

I completely understand your worries and it does seem as though Lisanna's compensatory curve is leading the charge and the primary curve is following suit. I don't think this should be the norm and the brace is not being fitted correctly. You were mentioning that Lisanna has a very severe shoulder tilt and this could very likely be the cause. In Deirdre's case one shoulder should be more forward than the other because of the twisting but in terms of height both shoulders should be level. It doesn't make any sense walking around with severe shoulder tilt - this goes completely against the theory of balance and corrective movement.

[gerbo]

that is, according to the manual, not correct, as the shoulder tilt is part of the corrective movement for our curve, and if they would be level, you would not have this corrective action. The theory is that as the spine can still go throough its complete range of movements, this should not result in a permanent sec curve. Saying all that; we have asked at our last visit foran adjustment, as the sec curve was giving us increasing concern, and the action of thatband has been changed, now giving more a twist backwards of the rightshoulder (a derotating movement?), rather than pushing it downwards. It all can be a bit bamboozeling i have to admit.....

[Celia]

... The theory is that as the spine can still go throough its complete range of movements, this should not result in a permanent sec curve.

That's theory! It's obvious by looking at Deirdre's x-ray what the shoulder tilt was doing. It doesn't take much to project what will happen as the higher curve progresses and the rest of the spine tries to balance out. This is all based on my very limited knowledge of human physiology - so I probably don't know what the heck I'm talking about. In the end, whatever I do has to make sense to me.

[rtremb]

Hi Everyone:

We saw Dr. Rivard today. What a great doctor...good sense of humour too! He was not very optimistic about the benefit of Esme wearing a Spinecor brace since her curves are T52 and L51 on the computer x-rays. He said he would fit her with the brace but only gave a 10-15% chance it would do any good. These are better odds than we got from the first orthopaedic doctor at CHEO who wants to do surgery next February. The second doctor at CHEO encouraged us to try whatever we could since Esme has a little time before surgery is absolutely necessary. We are thinking we will go with the Spinecor for the next six months, carefully follow the Spinecor physiotherapy and see how it goes. Who knows maybe Esme will be lucky and her curves will reduce as she grows taller like her brother's did....trying to be optimistic here!! Esme can get fitted for the Spinecor brace in Montreal in mid-October when Dr. Rivard returns from Europe.

Dr. Rivard also talked to us about fusionless surgery which he is now starting to do. He said Esme could be a candidate but only if she is flexible enough. The flexibility is judged by examining bending x-rays. We are interested in learning more about this if anyone on the forum knows anything about it? He says this technique only fuses two vertebrae therefore more spine flexibility is retained.

[Celia]

Hmmm... that procedure sounds interesting. I wonder if it's this patent Not sure. I'm sorry about the appointment.


http://www.google.com/patents?id=T3I...rd+c.h#PPA1,M1

[rtremb]

Celia: Thanks for the link - will print and read. Don't know if this is what Dr. Rivard is referring to.
About Esme's appointment with Dr. Rivard - we are pleased that he will permit her to at least try the brace. I was concerned he might not even let us try it. While it is a long shot I guess that is where we are now and can only keep trying things and hoping something will work. Too bad no doctors mentioned Spinecor earlier when her curves were less than 20 degrees.

[RugbyLaura]

Ruth, I don't know of any doctor that has suggested Spinecor. Everyone I know has had to search it out themselves. Hopefully in time this will change. I agree that 10-15% chance is at least something to aim for and it helps to feel that you're doing something. You never know! My fingers are crossed for Esme.

I agree that the "fusionless" surgery sounds fantastic.

Laura

[alabama mom]

Hi guys. I have a question for the moms of the older girls. What do the girls do, and what works best, in regards to their menstrual cycles. I haven't really seen anything on this thread about it, and I am concerned about making this as easy on my daughter as possible. If any of you feel more comfortable contacting me privately, that would be just fine too. Thank you. Nancy

[MATJESNIC]

Just put the pad on the spinecor bodysuit. That worked fine for us.

[Sherie]

Ruth: Well, that doesn't sound like the best odds, but at least they're giving you a chance to try it. I hope it works.

If she ends up having surgery, this fusionless surgery would be wonderful. I searched and called a few places but couldn't find anyone who was doing this here in the States. Did he say anything about the degrees being a factor? I wonder how many kids they've done this on?

[Celia]

Ruth,

It's unfortunate the doctors didn't think to take action when your daughter's curve was still about 20 degrees!!!!

Your daughter has a lumbar curve, right? Have you looked into the torso rotation exercises?? There is an article by an orthopaedic surgeon, Dr. Vert Mooney and also recently Dr. Marc Asher and they discuss the success of torso rotation exercises. It's not an expensive undertaking at all. I'll try to dig up the article for you - maybe someone else can? I've read the article and the results are quite impressive. There is also a link somewhere which lists facilities that carry the medex torso rotation equipment and I'm sure there's one near your area.

[gerbo]

http://www.scoliosis.org/forum/showthread.php?t=3627

all relevant info in here, (if all links still working)

have to say, the few "failures" were with larger curves. Worth trying i think myself (we are still faithfully rotating twice a week)

[Celia]

Darn...the links don't work! How does one go about locating facilities? I've uploaded the article to scoliosis-support. Here's the link:

http://www.scoliosis-support.org/upl...ey_article.pdf