spinecor

[Snoopy]

Linda,

Any suggestions on how to catch kids earlier? Had my daughter and Melissa's daughter been caught earlier, who knows what their outcomes would have been. For my daughter, even if her school did routine Scoliosis screens, I doubt they would have caughter her Kyphosis. Are these school nurses even checking for Kyphosis?

We need to figure out a way to inform more people of the signs of Scoliosis-uneven shoulders, uneven waist band of their shorts, uneven hem on skirts--so maybe we can catch it at an earlier stage.

Mary Lou

[mariaf]

Mary Lou -

I agree with your view - mainly because everything you said mirrors my personal experience with orthopedic surgeons.

While I am not a huge fan of rigid bracing, it obviously does work in CERTAIN situations. More importantly, I do see surgeons routinely checking braces after the orthotist prepares them. David's former orthopedic surgeon definitely believed bracing had its place in her practice (I met several girls who were braced and never needed surgery - probably, as Linda said, these curves were caught at the right time among other things). She worked hand-in-hand with the orthotist, back and forth, until the brace was fitted exactly how they wanted it, the surgeon having the final say. This probably was what held David's curve.

I do agree that a large number of patients who are braced (hard brace, spinecor, etc.) will end up needing surgery - and there are all the other issues to deal with regarding brace wear - but from what I have seen I simply don't agree that orthopedic surgeons are against ridig bracing by any means.

[gerbo]

I suppose our opinions are based on our own experiences, which will vary widely. My personal experience in the UK was that consultants were not at all involved in the bracing, and did not particularly seemed to be interested as they seemed to think that it wouldn't make an awful lot of difference anyway.

I suppose this can than become a bit of a self-fullfilling prophecy as lack of "trying to get the best out of bracing" and lack of enthousiasm (to fire the patients motivation to wear the damned thing for 23 hours) is bound to lead to relative failure.

even our current "spinecorconsultant" doesn't seem to believe in anything to do with bracing and as celia suggests, it is really the orthotist who takes all responsibility. we do leave the hospital at times wondering why we still see the consultant at all........ (but i am sure he will be wonderful once he can take up his scalpel and start cutting......)

still, i am sure there are many consultants who are totally different and very positive re bracing, haven't come across many of those though

[LindaRacine]

Linda,
Are these school nurses even checking for Kyphosis?

Yes, when I sat through training, looking for kyphosis curves was included.

As to how more kids can be caught, I really have no idea. It looks like many U.S. states may be moving away from screening as a way to reduce budgets.

The good news is that there will hopefully be gene therapy to actually cure scoliosis in our lifetime.

--Linda

[gerbo]

The good news is that there will hopefully be gene therapy to actually cure scoliosis in our lifetime

that sounds ever so optimistic

[mrf]

I had thought more schools were performing the screening. My daughter's curve was first detected by the school nurse during a regular screening - not her pediatrician who had seen her a month before!!

I am dismayed by the number of orhopedists I have spoken with on the East Coast - even those who are on the Spinecor list - who are dismissing it as a form of treatment. What I have been told is that IF the particular patient is compliant with the TLSO then a switch to the Spinecor should not be made. A huge disappointment in that even with the additional positive findings/benefits with the Spinecor, most general orthopedists are still sticking with the TLSO. If we decide to go with the Spinecor for our daughter, I feel as if we are making the decision without any medical support.

[mrf]

Gerbo - Lost your last response. Can you repost?

[Celia]

The main reason I chose to go with the Spinecor brace and Drs Rivard and Coillard in particular was because they have a *real* interest in making this whole bracing thing work. They are the inventors of this brace and I knew that my daughter would get 110 % from them. I read numerous studies and accounts before hand that pointed to dismal failure with rigid bracing be it non compliance or uncaring doctors /orthotists. I only have two kids in this world and Deirdre is my only daughter and there were/are no second chances for her. She was diagnosed with one of the most aggressive forms of scoliosis – I had to learn very quickly. I was very fortunate not to have ended up with a schmuck ortho right from the get go because I have read *so many* horror stories when it comes to infantile scoliosis. My daughter could easily have been one of the many young children now facing repeated surgeries. When I read accounts of young babies whose curves have progressed within a matter of months to unmanageable proportions due to *gross negligence* on the part of some of these doctors I think to myself: there but by the grace of God go I.

[gerbo]

Gerbo - Lost your last response. Can you repost

I pulled it as on reflection I wasn't sure whether you wanted the kind of comment I was going to give However, now you are asking for it; the big question could be; what is having a TLSO brace supported by your consultant going to do for your daughter. Again, with a good correction and willingness to wear it, nothing wrong in using it, but realise that evidence for succes is not fantastic, although there is a fair amount of it, contrary to spinecor evidence, of which there is less, but what there is looks good. Bit of a dilemma really and in the end you need to make decisions based on available evidence plus your experience with either system. If you get a good initial correction with spinecor, and your daughter is willing to wear it, I think you can be pretty sure you'll do at least as well as with TSLO No garantees though but nobody wil give you a garantee, whatever you do, still my daughter has always been grateful for our choice, and a year onwards, we still have had noreason to regret

[mrf]

Most disturbing for us is that we have been told not to expect any correction the the TLSO. While this is based on our daughters specific situation, how do I balance that with Spinecor providers telling me we will surely have a correction with Spinecor? I know there are no guarantees.

We have come a long way in two weeks of wearing the TLSO. We are up to 16 hours a day and while she has yet to wear it to school, she has worn it to friend's houses and even told her best friend about it (although still not discussing with siblings, extended family or schoolmates). I must say, my wife and I are both shocked at her compliance! Which brings us to the major issue of the Spinecor. As I see it, the major advantage of the Spinecor is the willingness to comply with wearing the brace. If she refused to wear the TLSO, the Spinecor would be a no- brainer. Her compliance with the TLSO makes the decision to pursue the Spinecor much more difficult.

[MATJESNIC]

Hi Everyone,

I see three major benefits with the Spinecor. One is the willingness to wear it. Two is the positive affect it has on the body regarding muscles, lung capacity, etc. Three is the possibility for correction. When you have a curve that is borderline surgery, you desperately want some correction, not just a holding of the curve.

With that being said, I want to clarify something regarding early detection.

I did have early detection for Nicole. When Nicole was 10 1/2 her regular doctor noticed a small curve. She told me to come back in 6 months. I didn't take her back in 6 months. Her curve could have been a 20 at that point. Her doctor should have sent her to an ortho or sent her for an x-ray. "Come back in 6 months " was not an alarming statement to me. When I was Nicole's age, they thought they saw a curve and sent me for x-rays. Nothing came of it. So that was my thinking. I spent that year taking care of my 3 kids, working, and taking Nicole to numerous doctor appointments for bronchitis and other illnesses. She was sick a lot that year. Nobody ever asked to see her back. I never thought to ask them to look. It totally flew out of my head. Which is strange because I usually worry about everything. The one time I decide to be laid-back, something bad happens. Now a thousand other Parents could have been in my shoes, and a year later, their kids' curves would have still been tiny.

A year later at her next physical, the doctor saw a bad curve and would not let me leave the office until I called the orthopedic.
I have told this story many times. I just want to stress that Nicole could have been one of the lucky ones because her doctor did catch it early.
I dropped the ball. We can't go back in time. Her outcome could have been different. We will never know.

Sorry for the long post.

Melissa

[christine2]

Hi Melissa

I think what needs to come out of what you have been through is that waiting and watching should not be an option. If your Doc had said go get X rays now you would have. There are many parents that follow doctors wait and watch suggestions and as we all know scoliosis is unpredictable. We need to let parents know how important it is to be pro active!!!

Early detection is also very important my daughter was diognosed at 6 years old and I hope to god that we can reverse the curve (so far so good) My daughters pediatrician is checking all kids well or sick at every O.V. I wish we could get the message out.

Christine

[LindaRacine]

Again, with a good correction and willingness to wear it, nothing wrong in using it, but realise that evidence for succes is not fantastic, although there is a fair amount of it, contrary to spinecor evidence, of which there is less, but what there is looks good.

Hi Gerbo...

I think we've had this discussion before, but there is plenty of evidence that TLSO braces do, in fact, work for the majority of patients. Here are just a few:

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Regards,
Linda

[Snoopy]

Melissa,

I'm sorry your doctor wasn't insistant about sending you for x-rays right away. Had you known then what you know now, I'm sure you would have insisted on x-rays immediately.

Mary Lou

[christine2]

Melissa

I want to make sure that you know how helpfull you have been to all of us. I have learned a ton from you about scoliosis. If it were not for you, my daughter would not be in the spinecor and her quality of life would have been greatly comprimised. I am not sure of the outcome. She was diognosed with a 33 degree curve at 6 years old (big curve so young) But I do know one thing If she ends up having surgery her muscles and lungs will be strong which will better handle recovery.

Thank you
Christine