spinecor

[shaes mom]

Pat,

Thanks for the info. Was that $3,000 2 1/2 years ago or is it currently $3,000? Do you happen to know?

[txmarinemom]

Do what you think is best for your kids. RugbyLaura, there's something very laughable about your claim of "hostilities", and it involves a kettle and a pot.

Again, Laura, you are in the UK - and maybe like the Canadians - your doctors consider Spinecor viable. That is not the case in the States, - and the proof for both the UK and Canada is that they have NO IDEA on whom it works. I find it funny only ONE person snapped to how in-brace x-rays skew results ...

Theresa, you *should* research the difference between VBS and fusion before you speak on either. Additionally, if your husband can TREAT your child's scoli, his profession matters. If not, he's simply a parent, and he could be a janitor for all it matters.

You jumped in with both feet criticizing a facility that prefers a method (VBS) that's demonstrated far more success than Spinecor. Again, despite all your backup voices, ASK yourself why orthos in the US don't rx Spinecor.

Laura, I thought you said something about "I shan't post again.". *sigh (no such luck)

[shaes mom]

txmarine mom,

Do you know how many private messages I've received telling me what an A__ you are!!!!

Now I know why you have the title you do. You're giving the marines a bad name.

I didn't criticize anything. And I wasn't speaking on VSB either. Where do you get off saying that?

What gives you the right to criticize everything everyone else says on here. Why don't you mind your F'n business. You obviously haven't done your research. Have you read the Orthopaedic Journal's study on Spinecor?

What the hell do you care if I take MY daughter for a Spinecor brace or not?

[txmarinemom]

Oh, Good LORD. You're certainly under the tutelage of the experts.

And anyone who resorts to "You give the Marines (yeah, along with all the OTHER things you don't know, it's CAPITALIZED) a bad name ..."

... you're in the right peer group, sugar. Carry on.

[shaes mom]

You know, I was just waiting to see if you'd berate me on my typos.

So you know what, you have a nice day and a nice life. Boy, it's only taken me 1 day (not even) to figure you out.

Bye-bye

[txmarinemom]

I'm entirely sure it was a typo. Just like surgery is surgery.

Again, carry on ... feel free to call me what you will, sweetheart. You're only upsetting yourself. Just drop it if you don't have anything to say.

[christine2]

Theresa

Just ignore all of this garbage and it will go away. Remember your task is to get information. This is a place where other parents are in the same boat as you and you need all the info you can get to make the best decision for your child. I also have been in the "hot seat" as you are now. My suggestion is to let everyone else bicker around you and just focus on your issues.

I am not sure if the $ of spinecor is still the same. Dr Rivard is good at returning calls and E Mails. Have you spoken to him yet?

[desheah]

theresa,

did you get my e-mail? it was heavily laden with attachments so i hope it went through okay.

deshea

[rtremb]

Jill - great news.
------------------
We bought the Spinecor for our daughter, Esme, last November and it was $3,100.00 Canadian including an extra Spinecor suit (worn under the brace). We are Canadian so didn't have to pay the professional fee for Dr. Rivard or for the x-rays.

The brace didn't work for our daughter but her curves were in the 50's when we found out about it and went to get it. I really believe it has a good chance of working on smaller curves. Dr. Rivard was very clear with us though that there are some curves that nothing will stop.

We see Esme's orthopaedic doctor next Monday to discuss surgery. Not looking forward to this! We are still "surgically reluctant"!

She had a rolfing treatment today and again Miranda made her back look great. Too bad the x-rays are telling a different story...

Ruth

[mariaf]

I do not consider the spinecor brace an *experimental* brace! It has been around for the past 25 years unlike vertebral stapling which has been around for 5 short years.

Where is the long-term data on Spinecor (25 years). I genuinely would be interested in seeing it.

[mariaf]

The articles on vertebral stapling are riddled with inaccuracies and inconsistencies. I am dismayed that many of the parents who are advocating vertebral stapling have only had the procedure for a few short months or slightly more than a year and consequently it is difficult to assess whether in fact the procedure is a viable alternative to “spinal fusion” Granted Maria’s son is holding steady at 30 degrees and I sincerely hope he does well, but many would deem such a level of scoliosis moderate! There is no guarantee that children who undergo vertebral stapling will not require more surgery at a later date. They will end up with more metal in their backs. A better word for these staples would be sharp prongs! What if one of these prongs migrates to the aorta?

You say the articles on VBS are riddled with inaccuracies and inconsistencies. If you care to point these out, I will present them to Dr. Betz for his explanation. You keep stating things like Spinecor has been used for 25 years, etc. but PROVIDE NO PROOF OF WHAT YOU SAY.

I'm not sure what you were getting at when you pointed out that my son's curve is "moderate". He started out at 40 and is now at 30 in the four years since VBS will improvement in his rotation as well. Prior to that he had been braced for a few years, with no improvement but the brace was apparently holding him. I believe, as virtually all orthos in this country do, that no brace will CORRECT a curve.

As far as kids who get VBS POSSIBLY needing more surgery later on, based on the past seven or so years (and many kids have reached skeletal maturity), I suppose a very small percentage will. But what about the kids for whom VBS PREVENTS fusion?

To your comment about a staple migrating to the aorta, the staples are not just "hanging" there. The bone actually grows around the edges of the staples. So, then what about a child with HOOKS, etc. from fusion - could these in your opinion migrate to the aorta as well. That was just a comment that would better have been kept in your head. Don't you think parents, prior to VBS or fusion or VEPTR CONSIDER ALL THESE THINGS??? Most surgeries have risks. You say that one person is against Spinecor.....Me thinks one person is against VBS - which is FINE - that's your choice - but don't beat up on someone else for having an opinion that is NOT favorable of Spinecor - shouldn't the same rules apply to everyone???? or are only certain people allowed to voice their opinions???

[Susie*Bee]

Hey, friends... this is the spinecor thread--

It's interesting that there are so many different ideas on scoliosis treatment in kids... but not surprising. We have seen how varied our doctors are in other areas as well. This forum is for support and information-- or at least that is what I thought. So let's try to keep our emotions at bay, and just "state the facts" and information as best we can, without resorting to written "shouting matches"... I know when something is near and dear to us, our emotions can be ready to burst open with the slight provocation. It's good to share, good to see different ideas of treatment, and even good to have constructive (helpful) criticism, but presented in a caring manner. We can all do that if we try.

[RugbyLaura]

Theresa,

I don't know how far back you've gone when reading this thread... You don't have to go terribly far back to see that until recently this was a wonderfully supportive and pleasant place to be 100% of the time. When Imogen was first diagnosed I spent most of my time here; it seemed that no-one else knew what we were going through. Yes, AIS is reasonably "common" but very few people you meet in everyday life have experience of Juvenile Scoliosis.

I will tell you our complete Scoliosis story (to date) as I find it theraputic to go through it all occasionally. Also because I find each story facinating so can only assume that (some) others may be interested in ours. Feel free to skip it if you're short of time!

When Imogen was 7 her gymnastics coach pointed out that she was unable to do a japana (sit with legs apart & put chest on floor). The coach said that this was because she had Scoliosis and that she (the coach) knew this because she had Scoliosis herself. I (much to my embarassment and guilt) was very casual about the whole thing, in part because of the casual way in which it was said and also because the coach was (is) a beautiful apparently physically flawless and talented gymnast. She introduced me to another coach with Scoliosis; they both appeared to be totally "normal" apart from slight physical anomilies - one had no "in" at her waist on the left & the other I can't even remember. Anyway, suffice to say that I thought nothing more of it for a year.

When Immy was 8 I began to notice that she looked twisted when she did some stretches. I had a quick look on the internet & thought "Hummm, perhaps I need to look into this!" So made an appointment with the GP. GP = General Practitioner, or family doctor in the UK. This Gp stated that Immy had "a slight asymmetry of the spine" and that "We're all asymmetrical to some degree." She told me that there was nothing to worry about & to go home & take some photographs so that we could monitor the situation ourselves. This was a young child with an obvious rib hump - I was not impressed!! I insisted on a referral & was made to feel like a fussing mother.

We were referred to a General Orthoaedic Consultant Surgeon, he was not a Scoliosis specialist; I was not aware that there were any at this stage or I would have insisted on one & saved some time. This Consultant examined Immy & agreed that she had Scoliosis, this was some months later & Imogen was now 9. He sent her for x-rays & wrote to us - after an alarming amount of time - to say that her curve measured 28 degrees and that he would see her again in a YEAR!! The man obviously knew NOTHING about Juvenile Scoliosis & was treating her as an adolescent! I instisted on an ealier appointment and a referral to a Scoliosis specialist. More time ticked by........

We saw a specialist - a bigwig in Scoliosis in the UK. He said that she had Juvenile Scoliosis & that bracing was generally considered to be a waste of time. He said he needed new xrays as the original ones did not show the whole spine & therefore he could not measure the curve.

More time.... xray appointment.

More time.... Back to the bigwig.

Going by our first appointment with him we were expecting him to say he'd wait & watch & to come back in 4-6 months. He actually did an about face & said that her curve measured 32 degrees & that he wanted to get her into a brace asap. Our jaws hit the floor & I spent the next 2 weeks in tears. asap turned out to be 3 months!!

During this time I discovered this forum and the Spinecor brace in particular. I "stalked" the founder of this thread & found out all I could about both the rigid brace & Spinecor.

When we finally got her Spinecor brace Immy's curve was measured at 38 degrees; it had progressed by 10 degrees in 6 months and was approaching surgery level (40 degrees generally accepted in the UK). Had we stuck with the first guy we would still be 7 months away from her next appointment.

That's the end of chapter one folks. Sorry to be so self-indulgent, hope I haven't bored the pants off you & that there are not too many typos (haven't the time to proof-read). Next installment - Our Spinecor experience will follow... (Of no! Not more!!)

Laura xx

[amandap]

Hi Theresa,

First of all welcome to NSF you really will find tons of helpful info from parents all over the globe who have a much knowledge on various different treatment options. Unfortunately there has been much debate and things do tend to get heated based on individual treatment choices. As parents we are all forced to make choices and we all do what we feel is best for our child.

I personally do not know a whole lot about spinecore and what insurance may or may not cover and who is best suited to presibe the brace for your child I can say that I would probably see an orthopedist for treatment before seeing a chiropractor (just my biased opinion here).

The one thing that does concern me about spinecor is the fact they do not do out of brace x-rays regularly which can lead parents to gain false hope about correction. My daugther wore a milwaukee brace for 6 months she was braced when her curve reached 42*. Her in brace x-rays were always great 18*, 20*, 17* which is good but it's not a permanent correction her out of brace x-rays (usually out of brace 24-48 hours) were right back to 42* no change which only meant that brace was holding her curve which is what a brace is suppossed to do ~ to date I know of no brace that will actually correct a curve long term when the brace comes off the curves go right back to where they were before. So please keep this in mind when making your decision and please seek numerous consultations each orthopedist you see will probably give you different treatment options.

Personally we chose to move forward with VBS (Vertebral Body Stapling) which is a surgical procedure. It has only been done for the last 7 almost 8 years and while the initial data was somewhat skewed with a number of faliures that has changed in recent years due primarily to the fact that the criteria for being a candidate has changed. Before the procedure was done on several children who had underlying medical conditions that contributed to their scoliois and they were also stapling much higher curves ~ obviously that did not work. The criteria now is a bit different and they only staple children who have idopathic scoliosis and they normally don't staple children with curves greater than 45* there must also be considerable growth remaining along with spine flexibility.

Our situation was very simple we had a 5 yr old daughter with a 42* curve the orthos we saw all told us the same thing ~ she would wear her brace 23/7 for the next 8-10 yrs and hope that her curve did not progress beyond 50* prior to puberty otherwise she'd have to have growth rods therefore requiring surgery every 6 months to expand the rods and of course best case scenerio was that the brace would hold her curve through puberty at which point she'd be fused. VBS gave us an alternative treatment (of course there are no guarantees) with staples applied to the convex (outer) side of the curve applying pressure to the growth plate to slow or stop curve progression. The added positive to this is that while growth is being slowed on the one side this allows the other side to possibly catch up over time and the curve itself is corrected. It is essentially an internal brace worn 24 hours a day 7 days a week VBS is not an alternative to fusion it is mearly an alternative form of bracing. My daughter is almost 2 years post op and doing great thus far, her initial 42* curve was corrected down to 26* and since then she's had about 5" of growth and the curve at her last appt in December 2007 was still at 26* at this point even if she does not correct at all the doctors wouldn't even think of fusing her on the other hand should the staples not hold her curve and she does end up being fused when she's 15 or 16 well at least she got to that point brace free and was able to grow up perfectly normal with no restrictions which in our opinion still means VBS was a success. That is another point I failed to mention with the staples the child's spine remains completely flexible and there are no restrictions kiddos can still do whatever they did prior to surgery.

Your daughter only has an 18* curve so you still have plenty of time to research and get multiple opinions there is no need to rush. If you'd like more info on VBS please feel free to visit the parent created website www.vertebralstapling.com from there you can access the list of doctors around the US who are now doing VBS as well as more info, you can read a few stories about children who have undergone VBS and you can also access the discussion forum from there. We live in Texas but travel to Philly for our daughters medical care at Shriners Hospital. Also feel free to email me if you prefer domingo_amandapompa@msn.com.

Please don't feel like I am trying to persuade your opinion, I am only giving you an alternative treatment option and explain what VBS is.

Like I said you will find this site to be extremely beneficial to you.

Good Luck ~ Amanda

[desheah]

since i was curious, i went to pubmed to see what was the first article published about the spinecor brace. here it is:

Ann Chir. 1999;53(8):781-91.Links
[Reductibility of idiopathic scoliosis during orthopedic treatment]
[Article in French]

Coillard C, Leroux MA, Zabjek KF, Rivard CH.

Département de Chirurgie, Faculté de Médecine, Université de Montréal, Hôpital Sainte-Justine, Québec, Canada.

Non-operative treatment of idiopathic scoliosis is long and difficult. For the patient and the therapist it is particularly important to define early the therapeutic prognosis. The goal of this study is to verify if the initial reducibility at the beginning of treatment with the dynamic corrective brace (Spinecor) would be valid as a prognostic factor, allowing a more effective prognostic judgement of the final outcome treatment. This is a prospective study which includes 99 scoliosis patients (88 female, 11 male), with a mean age of new 12.6 years, treated by the dynamic corrective brace for progressive idiopathic scoliosis curves (29 degrees mean Cobb angle). The initial Cobb angle was compared to the pre-therapeutic Cobb angle. The results demonstrate that the reducibility of the scoliotic curves with the brace at the beginning of treatment provides a significant global prognostic index but is difficult to apply individually. Other factors should be considered, such as the impact of growth velocity on the spinal deformity at the onset of the adolescent growth spent as well as vertebral deformities diagnosed around the apex.
_________________________________________________


i don't have access to this article (nor do i speak french so i couldn't even translate it if i could get it!).

the more definitive article wasn't published until 2003 and more recently last year in 2007 it was compared side by side to the providence night-time brace under the srs new standardized criteria.

if anyone wants copies of these other articles, i would be more than happy to send them along by pdf if you send me a private message through nsf with your e-mail address.

fyi,
deshea