Setting the Record Straight

[txmarinemom]

At this point, I would pick VBS over 23 hour/day bracing if I had a JIS kid and they qualified. No question. Not sure if I would have made that decision 4 years ago... I might have tried a night-time brace first. But after that, I likely would have picked VBS over full time bracing. Life is short.

Amen, Sharon. Having been a braced child - and probably (in my day) what's now considered a prime VBS candidate - I WISH the option had been available to me.

I may stand alone in this view, but VBS vs. bracing (that BRAIST is actually set up to prove does NOT work) is a no brainer ...

[txmarinemom]

I'm going to have to buzz you on that. Not even a little bit possible/credible.

Scoliosis is his game. If he hasn't researched VBS by now then scoliosis isn't his game (which it is).

By the way, how long do you think he would need to research VBS in order to make a decision? How many days? Weeks? Months? Years? Decades? Centuries? Millenia? Geological deep time periods?

And even if you were correct, he could have jumped back on here at any point since Maria has been asking him to post the link (which is measured in years at this point I think) and said he hasn't had the chance to research it (which is of course unbelievable).

Rather he posted some obfuscatory/obscurantist stuff upthread. Please review those posts.

Care to try again?

Uh, yeah ...

In my emails with him, he speaks of no changes in the VBS arena since *2005* ... that is ABSOLUTELY not accurate.

[Pooka1]

Uh, yeah ...

In my emails with him, he speaks of no changes in the VBS arena since *2005* ... that is ABSOLUTELY not accurate.

I was right. He's a man of faith, not evidence.

He's a man of faith AS AGAINST evidence.

Science is a way of knowing. Faith is a way of pretending to know.

[Pooka1]

And in 90+ years, Schroth is proven? They are blasted all over the home page here.

Legal ramifications???

For providing info??? You, of all people, are constantly saying people should be aware of non-surgical alt tretaments. Babe, VBS isn't alt ... it's just a tad too ~icky~ for some. It isn't fusion, and it has a HELL of a lot better record than Spinecor OR Schroth. This site refuses to even post the current parameters and corollaries for VBS.

If I were Betz, I'd cut ties with NSF for talking out of both sides ... but that's just me.

I suppose the crushed hopes provided by Schroth and Spinecor (Joe's supported treatment choices) are more kind ...?

Faith versus evidence.

Emotion versus reason.

Wishful thinking versus science.

Stark choices that don't overlap even a little bit.

Before I came on here, if you had told me there were a bunch of people who think alternatives treatments MUST work simply because they can't conceive of them not, I wouldn't have believed you.

I find this forum jaw-dropping in that regard. In the kids section is one thing... in the adult section is remarkable.

Reality... not just a good idea.

[mamamax]

Faith versus evidence.

Emotion versus reason.

Wishful thinking versus science.

Stark choices that don't overlap even a little bit.

Before I came on here, if you had told me there were a bunch of people who think alternatives treatments MUST work simply because they can't conceive of them not, I wouldn't have believed you.

I find this forum jaw-dropping in that regard. In the kids section is one thing... in the adult section is remarkable.

Reality... not just a good idea.

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience

Simple research by reading two books would clear up many things.

(1) Scoliosis and the Human Spine by Martha C. Hawes

(2) Three dimensional Treatment for Scoliosis by Christa Lehnert-Schroth

IF the intelligent people found here (who have not read these works) - were actually to study them .. This forum would be phenomenal.

[mariaf]

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience

Mamamax,

If you've read the posts here, seemingly intelligent people have discounted VBS as well (which is their right), not just Spinecor and Schroth. What is your view on that?

In fact, back when discussions regarding VBS first began here (and were very heated) that was our argument as well - did the folks opposed to VBS (who, for some strange reason, also seemed to be the big supporters of Spinecor) have any personal experience with VBS as I and others did?? They did not. So, we were simply trying to share what we had learned through in-depth research, as well as our PERSONAL EXPERIENCES with others - but it was very difficult to do given the hostile responses by some folks here - and unfortunately, our moderators never interevened. I guess that's part of life - folks will form opinions whether they have personal experience or not.

By the way, Pam - I'm glad you saved all of those e-mails with Joe. For anyone who believes he is "still researching VBS" (as Sharon said, a third grader could figure out that's not the case), I'm going to estimate and say that our original discussions (and request for a link) began over a year ago (perhaps Pam or I can find the exact date). Just how long does he need to do his research???

[Pooka1]

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience

Simple research by reading two books would clear up many things.

(1) Scoliosis and the Human Spine by Martha C. Hawes

(2) Three dimensional Treatment for Scoliosis by Christa Lehnert-Schroth

IF the intelligent people found here (who have not read these works) - were actually to study them .. This forum would be phenomenal.

Yes I see. In other words, the orthopedic surgeons are idiots.

You actually don't see the multiple flaws in your reasoning, do you?

[Pooka1]

Mamamax,

Apparently, seemingly intelligent people are discounting VBS as well (which is their right), not just Spinecor and Schroth. Was is your view on that?

By the way, Pam - I'm glad you saved all of those e-mails with Joe. For anyone who believe he is "still researching VBS", I'm going to estimate and say that our original discussion (and request for a link) began over a year ago (perhaps Pam or I can find the exact date) - just how long does he need to do his homework???

VBS has too much evidence. It would stand out like a sore thumb if lumped with Schroth and Spinecor that rely on faith at this point.

[Pooka1]

He may be researching it himself personally? Seems Joe does do such things. Just my 2 cents.

"Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling." -- Joe O'Brien, 2009

ETA: As I said, scoliosis is his game. It is ridiculous to suggest he wasn't up on it. What isn't ridiculous to suggest is that what gets linked to is simply where O'Brien's hopes and interests lie, as opposed to where the evidence leads. His site, his prerogative I suppose but that is not really being true to what facts are or are not out there.

Mamamax's response... "...

[concerned dad]

I havent been following this too much but the links page looks like it has mostly general info.

Just where do you want him to put the link?

Do you want him to put it between Spinekids and the National institute of Health? or after Quackwatch?

I dont see any SpineCor or Schroth links there.

I would agree with Joe that Maria's signature probably steers more traffic to the VBS site than any obscure link page.

Maybe he needs to hire a web guy to modify the site and is waiting to include it in the next update.

I think it would be equally (if not more) helpful to include a link to the european scoliosis support forum.
Also, maybe a link to the SOSORT website and the online Scoliosis Journal website. (I mean, Joe is active in SOSORT isnt he? Do you think they are offended he hasnt gotten around to linking to them - he does link to SRS. Does that mean he doesnt condone or respect SOSORT? I suspect he just hasnt gotten around to updating his links - he probably can look at page traffic and that page may get limited hits, so limited to make it not worthwhile to bother right now)

I also think that removing the link to here from the VBS site is petty. Who does that help and hurt? I dont think it hurts NSF but it does hurt the parents at VBS who may find useful info here.

Just my 2 cents.

[LindaRacine]

Maybe he needs to hire a web guy to modify the site and is waiting to include it in the next update.

As far as I know, Joe counts on a volunteer (who only occasionally has time) to update the entire website.

[Ballet Mom]

txmarinemom,

“And in 90+ years, Schroth is proven? They are blasted all over the home page here.”

Sorry, I don’t see where you are seeing this.

“Legal ramifications???”

Yes, of course. No one can prevent anyone from suing them…I’m sure you know this. Why would anyone knowingly open themselves up as a target? I’m quite sure a non-profit organization has more to do with their limited funds than fighting lawsuits.

“Babe, VBS isn't alt ... it's just a tad too ~icky~ for some.”

Oh please.

“This site refuses to even post the current parameters and corollaries for VBS.”

I can search the archives and find postings of VBS. There doesn’t appear to be anyone stopping posts of VBS. And they certainly allow Maria to come and direct people to their private non-medical professional VBS forum. I also notice that Maria's site doesn't even post the current parameters for stapling.

“You, of all people, are constantly saying people should be aware of non-surgical alt tretaments.”

I would caution everyone to be aware of the profit motive behind both the alternative treatments AND the surgical treatments. I would be just as leery of someone trying to sell me a “scoliosis chair” for lots of money, as I would be of say the potential for an employee or a major shareholder of a company like Medtronics (just an example, I’m not accusing them of anything), who sells both the nitinol staples and spine implants participating anonymously in a forum such as this to promote their products to increase their profit margin. (And no, I'm not talking about the moms who decided to have their kids stapled).

Where else are you going to help convince someone to use their highly profitable scoliosis products other than the surgeon’s office? And the surgeons will eventually respond to that created external demand. It would probably be considered a very innovative method of product management.

“If I were Betz, I'd cut ties with NSF for talking out of both sides ... but that's just me.”

I suspect Dr. Betz has better things to do with his time than to worry about the latest hissy fit over a requested link to a private parent forum.

[Ballet Mom]

Pooka,

I was right. He's a man of faith, not evidence.

He's a man of faith AS AGAINST evidence.

Science is a way of knowing. Faith is a way of pretending to know.

Seeing as he has directly seen his kids avoid surgery by utilizing braces, I hardly think your comment is even close to being accurate. And I've read about many successful bracing stories also, including my own child with a rapidly progressing curve. Even Dr. Betz in his studies states that bracing is successful in 50% to 80% of cases.

[Ballet Mom]

"I may stand alone in this view, but VBS vs. bracing (that BRAIST is actually set up to prove does NOT work) is a no brainer ... "

quote from txmarinemom

Proving Pooka's belief that most research is false for various reasons.

[mariaf]

And they certainly allow Maria to come and direct people to their private non-medical professional VBS forum. I also notice that Maria's site doesn't even post the current parameters for stapling.


I suspect Dr. Betz has better things to do with his time than to worry about the latest hissy fit over a requested link to a private parent forum.

Ballet Mom,

I'm not sure where you are loooking, but:

1. the current parameters ARE posted on the VBS site (by the way, as much as I'd love the credit it's not MY site, but rather was put together by several parents with the help of Dr. Betz and others in the field who provided articles, and in Dr. Betz's case the names of doctors he'd trained in the procedure so we could list them on the site, etc.)

2. you call the site a professional VBS forum (whatever that means) - we state right on the home page that we are not medical professionals but rather parents of kids w/scoli who are willing to share our VBS experiences, etc. and support each other as parents of kids w/scoliosis.

Did you even look at the site at all? How could you have missed the above?

As for Dr. Betz, in addition to what I posted above, while he surely does spend his time doing very meaningful work, he himself e-mailed Joe (his idea, not mine) to say that he not only approved of the site but that he hoped Joe would support it in all respects including adding a link here. I guess you didn't know any of this though. I've known Dr. Betz for almost six years (the time he's been treating my son) and we've had numerous discussions on scoliosis, VBS and other related topics - yet even I wouldn't speak FOR him.