Spinecor Adult Users

[concerned dad]

I suppose this is as good a place as any to post a few extracts from this paper that came out in last month's Spine Journal. It may help explain the reason for some of the skepticism we are expressing to Maxene.

Clinical Research
Is the Spine Field a Mine Field?
SPINE Volume 34, Number 5, pp 423–430

Many interventions are performed for axial back pain associated with common degenerative conditions, sometimes with weak or absent evidence of efficacy: so-called “dynamic stabilization” with various implants, distraction with interspinous devices, corticosteroid injection into the facet joints, prolotherapy, intradiscal steroid injection, botulinum toxin injection, intradiscal electrothermal therapy, radiofrequency facet denervation, radiofrequency sacroiliac denervation, and intrathecal therapy with opioids, to name a few. Though thousands of patients have been treated with these methods, there is no evidence of high-grade efficacy for even one of them.

At the same time, highly publicized news stories of surgeons receiving “millions in consulting fees, royalties and research grants” have appeared, in the context of “sham consulting agreements, sham royalty agreements, and lavish trips to desirable locations.”12 A large device manufacturer has paid a fine to the government to settle such allegations. 13 As a result, the spine field has been subject to ugly characterization in the press, highly skeptical governmental investigations, and frank accusations of corruption. Consumer Reports recently listed spinal surgery as number 1 on its list of overused tests and treatments.14 This is clearly not where this field wants to be.

A recent commentary in JAMA labeled the current system of industry-sponsored clinical research as “broken” and suggested that clinicians can no longer rely on the medical literature for valid and reliable information.47

(That last paragraph is especially for Sharon)

Granted that this paper/essay is focusing on spine surgery, I don’t think the conservative (ie bracing, Schroth, etc) treatments deserve to escape the same scrutiny; indeed I would suspect the situation there is worse. (As an aside, I wonder if they are referring to VBS when they say “dyanamic stabilization” in the first paragraph - hope not.)

I don’t think Maxene is a shill/plant, I think she is someone excited about the results she is seeing and wants to share the news with others. At the same time, and please don’t take offence Maxene, it sounds a bit like you “drank the cool aid”. I interpret the statements from the manufacturer as a warning to folks to stay away from practitioners offering correction and vestibular rehabilitation. You read the same statements as being ‘conservative’ and destined to change soon. (They did change soon, I’m pretty sure they were just put up there recently).

I agree the last thing you need is us telling you here that you are going to fail. That is not helpful. But there is a fine line between rooting for your success and reining in the influence of your enthusiasm on others who stumble across the posts (about the potential for a curve correction in an adult spine).

Let me just leave you with this encouraging thought. My opinion only. I would not rule out the possibility that the folks you are seeing could teach the inventors a thing or two about their brace. There is something to be said for experience and it sounds like they have treated a lot of people, maybe more than the folks in Montreal. The person who invented the paint brush doesn’t necessarily lay claim to being the best painter.

[green m&m]

Originally Posted by mamamax

Sharon Dunn from Canada <http://en.wikipedia.org/wiki/Sharon_Dunn> - her son braced with Spinecor as a young adult. Sharon subsequently wrote a magazine article about it that has become somewhat infamous <http://ca.geocities.com/dunnsharon@rogers.com/post/brace.html>. As you will read, her son was 16 when he began the journey. He is in his 20's now- and has maintained the correction. I've been fortunate enough to correspond with Sharon who has knowledge of many people and their experience with the Spinecor brace as result of her article and professional affiliations. She has shared some adult stories with me. She is building a site that will reference these stories shortly - will post the link here when she sends it to me.

A male scoliosis patient achieving correction through bracing, even as late as his early 20s, I'd never consider that to add to validity of bracing correcting adult curves. Guys can still be growing into their 20s so... I personally wouldn't consider his success equating to any possibility of the same happening to mature adult curves.

Originally Posted by mamamax

There are some adult testimonials on youtube.com .. just type in spinecor scoliosis in the search. Isn't everything on youtube?

YouTube? Please say you are joking. Anyone and their dog can post stuff there... I'd never trust it to be a valid source of anything. Good for laughs though.

Originally Posted by mamamax

I realize these are few in number and broad in scope. It is only in the last five years that Spinecor has been used on adults - i believe my provider has treated the largest number in the US. Only within the last month has the Spinecor manufacturer decided the brace is viable for adults (in fact they are now in the process of designing an adult brace based upon the information coming in) ... the information regarding the reduction of curves in the adult spine is just beginning to surface - but, it does in fact exist and appears most promising. Thank you for your question - good one ... and excellent choice in M&M!

These are few in numbers... I thought/hoped you had more valid material backing up your statements. Oh well...

[mariaf]

[B]
Pam, i would like to say that Spinecor has proven the exception to the rule regarding bracing in that it does effect change in the adult mature spine

I already regret posting to this thread, but I have to ask:

Where is the proof of this????

Or, for that matter, the proof that Spinecor - or ANY brace - can PERMANENTLY correct/change a curve in anyone, adult or child?

To my knowledge, bracing can only (best case scenario) maintain a curve, not permanently correct it - only surgery can do that.

[Pooka1]

In answer to question #2 - I think i know the difference between evidence and faith - and like many who have managed to live into their sixth decade, have seen an interesting number of exceptions to the rule in either case. You know me well enough to label me a short on the former and long on the latter? How odd.

I didn't mean that as a global comment on you. But it obviously applies to the bulk of your posts here.

You would not be alone on stumbling over the issue that evidence is the only way of knowing and that faith is merely a way of pretending to know.

[mamamax]

I didn't mean that as a global comment on you. But it obviously applies to the bulk of your posts here.

You would not be alone on stumbling over the issue that evidence is the only way of knowing and that faith is merely a way of pretending to know.

The bulk of my postings seem to be largely concerned with justifying my existence, don't they? Are all new members in the non surgical bracing forum treated so warmly, or is it just the Spinecor users. I wonder.

[mamamax]

A male scoliosis patient achieving correction through bracing, even as late as his early 20s, I'd never consider that to add to validity of bracing correcting adult curves. Guys can still be growing into their 20s so... I personally wouldn't consider his success equating to any possibility of the same happening to mature adult curves.



YouTube? Please say you are joking. Anyone and their dog can post stuff there... I'd never trust it to be a valid source of anything. Good for laughs though.



These are few in numbers... I thought/hoped you had more valid material backing up your statements. Oh well...

I would be curious to know if you actually checked any of the references out before dismissing them and am even more curious as to why you completely ignored two references that show there can be correction made to the adult spine without surgery (i.e, Dr. Martha Hawes, which proves the adult female spine can be improved significantly without surgery - scientifically documented and referred to by the medical and surgical community world wide http://www.psychosomaticmedicine.org.../full/63/6/994
and the studies provided at http://www.scoliosissystems.com/adult.html
Did you bother to research and read any of those?

Youtube is a direct reflection of the Internet - there is both good and bad information there. My brace provider has posted testimonials there (did you even look at one?) - real people telling of their Spinecor experience: http://www.scoliosissystems.com/adult.html

As for Susan Dunn's son Jay - yes he was young and male ... operative word - ADULT (capitalized for emphasis - not shouting). Wonder what he would think of dismissal of his seeming miracle. Probably nothing as he's fit and feeling well.

Maybe it is worth mentioning here that the current vice president and CEO of the National Scoliosis Foundation (which sponsors/provides this forum) has three children using the Spinecor brace. He has been quoted as saying that the brace - "does what it is supposed to do". http://www.spinecorbrace.biz/

Use of the Spinecor brace in adults is only five years old, it will be years until enough data is gathered, categorized, scientifically analyzed, etc, and published, so yes, the numbers are few and my access as a lay person is limited. When it comes to references - perhaps people only see what they wish to see. If i apply such lofty wisdom to myself - i cannot dismiss these - but then my perspective is this: i am an adult scoliosis patient who is not electing surgery at this time, in need of help - and these things look good to me ... furthermore, my experience is proving valid to me.

There was a time when all thought - no, knew - that the world was flat. I'm beginning to understand how those who suspected differently must have felt.

[LindaRacine]

Hi...

I agree that Mamamax looks and sounds like a shill. There are so many holes in her statements that one couldn't possibly no where to begin to start the debate.

Mamamax isn't the first to pull this, nor will she be the last. Those of you who participated in the MIT list years ago, may remember the minions of adults who got sucked in by Arthur Copes, and who tried every way they knew how, to convince other adults to join them. Their claims were almost identical to those of Maxine (barely started using the brace, and claiming huge curve decreases, both in and out of brace). To this day, I've never met a single adult who had a permanent improvement from wearing the Copes brace. (I have, however, known many individuals who ended up having to have surgery after being in the Copes brace.) Sometimes, there is justice. Arthur Copes now sits in prison, having not only sucked in individuals, but insurance companies as well.

Maxine... I don't think any of us care very much if you want to pursue this treatment for yourself. But, it is irresponsible to try to encourage others to do the same without any proof that it works.

Folks, if any of you work in insurance companies, or know people who do, please ask them to investigate medical professionals who get reimbursed for unproved treatments like this. It's criminal that insurance companies withhold reimbursement for things like BMP, but will reimburse for something like this.

Regards,
Linda

[hope404]

When we pursued the Spinecore for our 18 year old I remember the doctor clearly saying he was seeing changes(for the better) in adult spines.

Now are these changes permanent??? just a sales gimmick, not founded in truth..I don't know, but I can't knock Maxene for giving it a shot..its
not like there are tons of options out there...blah!!!

Personally, my FAITH in Spinecore has been shattered by concerned dad's "hypothetical" situation which he had presented in another thread....thanks CD.... one more option down the tubes haha

[LindaRacine]

By the way, for those who haven't seen it, this is an explanation of why the traditional medical community believes bracing in adults doesn't work:

http://scoliosislinks.com/AlternativesDontWork.htm

[Pooka1]

The bulk of my postings seem to be largely concerned with justifying my existence, don't they? Are all new members in the non surgical bracing forum treated so warmly, or is it just the Spinecor users. I wonder.

Just the folks who rely on faith versus evidence. If the shoe fits, pray about it.

[mamamax]

By the way, for those who haven't seen it, this is an explanation of why the traditional medical community believes bracing in adults doesn't work:

http://scoliosislinks.com/AlternativesDontWork.htm

Are you a medical professional Linda - noticed this web page is of your own creation - and also did not see the reference for the information given, can you provide it? Thanks.

[mamamax]

..........

[hope404]

Linda Racine...found the link interesting as to why bracing in adults doesn't work
just ran and got my daughters xrays.(paranoid)

the shape of her vertebrae are normal and unchanged..though I'll admit on the inner part of the curve the disc is squeezed almost to where it is bone on bone...ah..could explain her pain.

So I assume these endplate changes must occur in older more severe cases ???? Then it makes total sense as to why bracing would not possibly cause a permanent change in an adult.

So Maxene, go check your xrays.?????

Now a million dollar question, can bone heal itself and go back to its original shape once the stress is removed???

[Pooka1]

There was a time when all thought - no, knew - that the world was flat. I'm beginning to understand how those who suspected differently must have felt.

How the hell could they have KNOWN it was flat when it is round (actually an oblate spheroid)?

Nobody could have KNOWN it was flat. Nobody proved it was flat with

E-V-I-D-E-N-C-E.

You could say they "knew" the earth was flat EXACTLY LIKE like young earth creationsists "know" the earth is a few thousand years old which is to say they didn't know squat.

Here again is your obvious difficulty with anything remotely scientific.

[hope404]

run and check those xrays!!!!

wouldn't people who have had fusion be able to look at their xrays (several years post-op) and see if the shape of their vertebrae has returned to normal,(assuming the endplates had changed proir to surgery )once the stress was removed....it would be interesting to see.

Has anyone seen any articles on this ????