Setting the Record Straight

[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.

[mariaf]

Even Dr. Betz in his studies states that bracing is successful in 50% to 80% of cases.

Can you post the link to such study?? I'd be very interested in it. Thanks.

[Ballet Mom]

Can you post the link to such study?? I'd be very interested in it. Thanks.

"SUMMARY OF BACKGROUND DATA: The success rate of brace treatment of adolescent idiopathic scoliosis ranges from 50% to 82%"

http://www.ncbi.nlm.nih.gov/pubmed/14560201

[Ballet Mom]

the current parameters ARE posted on the VBS site

You state that curves should be less than 45 degrees. I believe they are much less than that at this point.



you call the site a professional VBS forum (whatever that means)

to their private non-medical professional VBS forum

You missed the non.

[mariaf]

You state that curves should be less than 45 degrees. I believe they are much less than that at this point.


Again, you are looking quickly but not reading thoroughly. If you had read all the posts on the VBS site - and heard from as many VBS parents as I have and/or spoken to doctors who perform this procedure as I have - you would know that for a SELECT group of patients, VBS can be an option even for curves in the low 40's. These are, again, very select cases - usually younger kids whose curves are very flexible. In a lot of cases, the cut-off is 35 or 40 degrees - it varies depending on a lot of factors.

Why are you even bringing up these points (which have not been accurate) if you have no interest in VBS? Or am I mistaken - are you currently considering it? Just curious.

[Ballet Mom]

I am simply reading the information you have in front of your i.d. wall. I have not read the forum in a long time because you have added an i.d. to read anything there and I don't wish to get an i.d.

I actually had my daughter checked out for the possibility of VBS, because of your visits to this site, when my daughter was first diagnosed and told that she would probably progress to surgery. The surgeon told me that at her initial 35 degrees she was not eligible for VBS as they had found that the size of the curves are being found to be smaller and smaller that will be in the stapling range. (And my daughter has an extremely flexible curve). I had not read yet about the surgeons who believe that stapling might not be the right thing to be doing. I simply was reading the hype surrounding the VBS and feeling desperate.

I actually consider myself quite fortunate because, if I had believed everything on this forum, my daughter's bracing would have been unsuccessful and actually, it has been wonderfully successful. I was able to watch my daughter in ballet class yesterday and was thanking God that she looked so good and was still able to do her ballet, her passion. We have been very fortunate.

[Pooka1]

Pooka,




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.

You don't get it.

[Pooka1]

quote from txmarinemom

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

An Emily Litella moment. You aren't even a little bit correct. You clearly don't understand how science works to make that statement.

[mariaf]

I actually had my daughter checked out for the possibility of VBS, because of your visits to this site, when my daughter was first diagnosed and told that she would probably progress to surgery. The surgeon told me that at her initial 35 degrees she was not eligible for VBS as they had found that the size of the curves are being found to be smaller and smaller that will be in the stapling range. (And my daughter has an extremely flexible curve). I had not read yet about the surgeons who believe that stapling might not be the right thing to be doing. I simply was reading the hype surrounding the VBS and feeling desperate.

I am very surprised to hear that a child with a 35 degree curve, who was "extremely flexible" would be immediately disqualified as a candidate for VBS. Flexibility is an important factor in determining candidacy for VBS, as is degree of curvature (35 being still "within the range").

I was going to say that perhaps there were other factors - such as her age -that played a part, but that doesn't make sense either since I assume she has some growth left if she is being braced. If she were done, or nearly done growing that would be a different story.

In all honesty, I'm very puzzled by this. The only thing I can figure is that perhaps the surgeon is not someone who has done [many] VBS procedures. There are a lot of surgeons who, because they are unfamiliar with VBS (meaning they have heard of it but are not really involved in seeing a lot of cases and don't know everything about it), don't feel comfortable recommending it. I can't tell you how many times I have heard of this happening, only to have the patient then see a VBS-trained surgeon who considered the patient a candidate. Of course, it is not "the right thing to be doing" in all cases - no doctor will tell you it is - only certain patients fit the criteria. Many are told the VBS is not the right choice for them.

By the way, I just read a post on the VBS site about a girl who had VBS several months ago. She is 8 years old and started with a 36 degree curve. I'm guessing the curve was flexible because her curve now measures less than 5 degrees. I bring this up to point out that 35 degrees should not automatically disqualify someone for VBS (unless there are some extenuating circumstances.)

Best of luck to your daughter.

[mamamax]

(Snipped)

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

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.

Agree with the above CD. Have been looking through the NSF web pages. Maybe something about VBS could be posted under Frequently Asked Questions - along with a brief explanation including the link to SRS reports.

There's a LOT of information on the home page and the SOSORT link does appear there, albeit this is for 2008 vs 2009. The Scoliosis Journal link appears on the SOSORT page. Would be nice not to have to search that hard for it and have in on the NSF Home Page.

A search option for such things on the NSF web pages would also be helpful.

He is an enormously busy man (reference posting #1) - I'm sure its just going to take some time to update web pages, and as Linda said - maybe this is done on a volunteer basis.

[Pooka1]

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

No we can be very sure that is not the reason because rather than post old emails, he would have said he intends to put the link up but is awaiting help form a volunteer.

Faith versus evidence.

If you are trained to trust faith over evidence, it can spill over into things where the rubber meets the road like scoliosis treatments where all hell breaks loose. :)

[Ballet Mom]

The only thing I can figure is that perhaps the surgeon is not someone who has done [many] VBS procedures. There are a lot of surgeons who, because they are unfamiliar with VBS (meaning they have heard of it but are not really involved in seeing a lot of cases and don't know everything about it), don't feel comfortable recommending it.

No, it's not that. This was a surgeon off the list on your website. I don't know of anything else that would have caused her not to qualify. She had a negative four degree Cobb angle on her Charleston Bending Brace and a negative five degree Cobb angle on her new custom made brace that she received in May, so it is certainly not her spine flexibility. And my daughter was at a Risser 0 when we went to this surgeon.

[mamamax]

No we can be very sure that is not the reason because rather than post old emails, he would have said he intends to put the link up but is awaiting help form a volunteer.

Faith versus evidence.

If you are trained to trust faith over evidence, it can spill over into things where the rubber meets the road like scoliosis treatments where all hell breaks loose. :)

Faith verses Evidence:

Without faith - what a truly grim world it would be. Sometimes, faith (by the primary definition) is required over evidence in order to solve a large puzzle in the face of grand obstacles.

Primary definition of faith: confidence or trust in a person or thing: faith in another's ability.

Example: Scientists were rated as great heretics by the church, but they were truly religious men because of their faith in the orderliness of the universe (Albert Einstein).

I'm not sure that i can see anything wrong with faith as it may be the inspiration that brought mankind out of the cave :-)

How can there be faith over evidence when - to trust evidence alone - is to have faith in evidence?

[Pooka1]

Faith verses Evidence:

Without faith - what a truly grim world it would be. Sometimes, faith (by the primary definition) is required over evidence in order to solve a large puzzle in the face of grand obstacles.

Primary definition of faith: confidence or trust in a person or thing: faith in another's ability.

If you have evidence, you don't need faith. You can bet your bottom dollar every sane person would gladly exchange their faith for evidence for something. This is beyond obvious. Yes/No?


Example: Scientists were rated as great heretics by the church, but they were truly religious men because of their faith in the orderliness of the universe (Albert Einstein).

It is very unfortunate that Einstein used religious metaphors in his writing. See his direct quotes on this. As he said on so many occasions, of course he is not a theist. It's annoying and sickening to constantly see him claimed as a theist but it's partly his own fault.

ETA: The orderliness of the universe and the universal laws are precisely the things for which that Einstein used the religious metaphors as shown by the quote. But we know, as did Einstein, that the more education you get, the less likely you are to be religious. In fact ~93% of the top scientists in the US reject the idea of a personal god. Science makes religion optional. Brute facts trump wishful faith when you know those facts.

“I do not believe in a personal God and have never denied this but have expressed it clearly.” -- A. Einstein

"I have repeatedly said that in my opinion the idea of a personal God is a childlike one. You may call me an agnostic, but I do not share the crusading spirit of the professional atheist whose fervor is mostly due to a painful act of liberation from the fetters of religious indoctrination received in youth. I prefer an attitude of humility corresponding to the weakness of our intellectual understanding of nature and of our own being." -- A. Einstein

From this we might say he was an agnostic but all agnostics are atheists (because they don't believe). But it is arguable he is just giving too much respect to the social taboo against criticizing religion. If he were alive today, I suspect he would admit to being an atheist as most top scientists today do.


I'm not sure that i can see anything wrong with faith as it may be the inspiration that brought mankind out of the cave :-)

Well, it's a relief you realize people didn't get magicked into existence a few thousand years ago. I have faith that there is hope for you to understand basic scientific facts. :)


How can there be faith over evidence when - to trust evidence alone - is to have faith in evidence?

That is an epistemological question that has been handled elsewhere and would be very off topic here. Google it.

[mamamax]

Morning Sharon - sometimes i love debating with you and this is one of them, and i am glad you have faith that there is hope for me to understand basic scientific facts. I love science actually - it is a grand mystery. Sorry for going a little off topic but seems we all do that from time to time - and faith is something i love as much as science .. both grand mysteries with many unexpected answers. Have a great one -

[Pooka1]

Morning Sharon - sometimes i love debating with you and this is one of them, and i am glad you have faith that there is hope for me to understand basic scientific facts. I love science actually - it is a grand mystery. Sorry for going a little off topic but seems we all do that from time to time - and faith is something i love as much as science .. both grand mysteries with many unexpected answers. Have a great one -

Thanks Mamamax! Very kind of you. Same to you! :)

[mariaf]

No, it's not that. This was a surgeon off the list on your website. I don't know of anything else that would have caused her not to qualify. She had a negative four degree Cobb angle on her Charleston Bending Brace and a negative five degree Cobb angle on her new custom made brace that she received in May, so it is certainly not her spine flexibility. And my daughter was at a Risser 0 when we went to this surgeon.

Thanks for that info. If you wouldn't mind sharing the surgeon's name with me (either by PM or email) I'd be very interested. Not that I would contact him or anything - but I'm very curious to know who it is.

Reason being, I was involved in putting that list together (with another mom) and the doctors whose names appear wanted to be listed because they chose to perform VBS because thought it was a good choice for CERTAIN patients.

In fact, a few of the surgeons had someone on their staff contact us to say "Dr. so-and-so is now performing VBS surgeries and would like to be included on the list". None of those names were added without first checking with these doctors, so again I'm just a little confused.

Thanks again - I'm glad the brace is working for your daughter!

[concerned dad]

Einstein said=> I do not share the crusading spirit of the professional atheist whose fervor is mostly due to a painful act of liberation from the fetters of religious indoctrination received in youth.

Ah ha,:eek: Sharon, is this where you get your fervor? :D Where you fettered?


I prefer an attitude of humility corresponding to the weakness of our intellectual understanding of nature and of our own being." -- A. Einstein

hmmm, I guess I'm with Albert on this one ;)

I too often use religious references and metaphores. I do enjoy the traditions and celebrations that accompany many religious events. I suppose being married to a jewish woman and sending our daughter to a private catholic school pretty much covers the bulk of my religious involvement though. It is always a challenge to make sure the menorah doesnt catch the Christmas tree on fire.

Swinging the thread back around (almost) to scoliosis - My daughter believes her curve reduced to 34 degress because of the prayer we said at St Josephs Oratory (http://www.scoliosis.org/forum/showpost.php?p=70267&postcount=3522). I dont want to take that belief away from her. I dont know for SURE that it didnt. I have to admit the thought crossed my mind. But the scientist in me recognizes the myraid of other explanations.

[Lorraine 1966]

CD, thank you for that story "St Josephs Oratory" your post was just nice to read, on a day when I am feeling rather low.

Lorraine.

[Pooka1]

Einstein said=> I do not share the crusading spirit of the professional atheist whose fervor is mostly due to a painful act of liberation from the fetters of religious indoctrination received in youth.

Ah ha, Sharon, is this where you get your fervor?

Nope. Some people come to atheism for that reason but certainly not most! Atheism is just a way to say you understand why humans created gods and religions and that you are intellectually honest.

The crusading aspect is more and more apparent as people get sick of the clerical bullying, the trampling on church/state separation, and the general immorality of purely religious-based positions like banning embryonic stem cell research and gay marriage and trying to limit choice. There is no non-theological reason to limit embryonic stem cell research, gay marriage or choice so there is no rational reason to do so. There is a word for adults who think "souls" live in petrie dishes.


Where you fettered?

No. My parents were both atheists. I later put in the reading and research to understand the specifics from many fields including archaeology, psychology, etc. of why atheism is the only rational choice.


I prefer an attitude of humility corresponding to the weakness of our intellectual understanding of nature and of our own being." -- A. Einstein
hmmm, I guess I'm with Albert on this one

Yes scientists have humility and admit they don't know. In contrast, religious people will tell you they know the mind of god, what he wants you to eat or not eat, who you can and cannot sleep with, etc. That is the OPPOSITE of humility in claiming to know things they can't possibly know, yes?


Swinging the thread back around (almost) to scoliosis - My daughter believes her curve reduced to 34 degrees because of the prayer we said at St Josephs Oratory (http://www.scoliosis.org/forum/showpost.php?p=70267&postcount=3522). I dont want to take that belief away from her. I dont know for SURE that it didnt. I have to admit the thought crossed my mind. But the scientist in me recognizes the myraid of other explanations.

You also don't know that invisible purple wombats on the far side of Pluto didn't decrease your daughter's curve and she incorrectly attributed it to her prayer to the biblical god. :)

There's a lot we don't know. It's unseemly to pretend we do know things we can't possibly know.

[mamamax]

From Albert ~


Science without religion is lame, religion without science is blind

The only real valuable thing is intuition

From mamamax:

Belief (by all definitions) may be quantum (the fundamental unit of a quantized physical magnitude, as angular momentum) to cure.

According to the Scientific Method - there are times when - the Scientific Method simply, does not apply:

http://teacher.nsrl.rochester.edu/phy_labs/AppendixE/AppendixE.html

[CHRIS WBS]

CD, thank you for that story "St Josephs Oratory" your post was just nice to read, on a day when I am feeling rather low.

Lorraine.

Faith-based stories have a way of lifting one’s spirits, don’t they Lorraine? If you’d like, send me a PM with your e-mail address, and I’ll share with you the story of how St. Therese (my favorite saint) interceded for me during my surgery experience, and also what occurred to me during my darkest moment in the ICU.

[Ballet Mom]

mariaf,


If you wouldn't mind sharing the surgeon's name with me (either by PM or email) I'd be very interested.

I'm sorry, I am unwilling to do that. I have the utmost respect for this surgeon and wouldn't do anything to harm his reputation in any way...(other than complain about his radiology staff)... :)

I am satisfied that my daughter's treatment has happened in the way it has for a reason.

[Ballet Mom]

CD,


It is always a challenge to make sure the menorah doesnt catch the Christmas tree on fire.

Thanks for the great imagery!

[Ballet Mom]

Pooka,


If you are trained to trust faith over evidence, it can spill over into things where the rubber meets the road like scoliosis treatments where all hell breaks loose.


why atheism is the only rational choice.

My faith is earned, not learned. And in fact, it was obtained long after I was trained in the scientified method. My undergraduate degree was in engineering so I have many more tough science classes than the average bear. To have faith doesn't mean people are slack-jawed yokels, in case you didn't know.


Yes scientists have humility and admit they don't know.

I have to disagree. The arrogance on display by "pure" scientists is really quite amazing. Earlier on in my life I worked at a top technological university and I have to say that lots of time was spent on trying to prove to each other who had the biggest brain. I believe humility is a prerequisite for true faith, which is no doubt a great part of the reason it is so lacking in the scientific community.


all agnostics are atheists (because they don't believe).

I believe that agnostics are willing to admit they don't know or it is unknowable...atheists believe they KNOW.

[LindaRacine]

OK, enough on religion. If you want to discuss that topic, there are plenty of other places to do that.

[dailystrength]

I think everyone dealing with scoliosis can all get a little agitated when challenged about their current method of dealing with scoliosis. We are all tired, in pain, frustrated, and somewhat angry. This is a condition for which no cures are found and research is underfunded. I myself have "gone off on someone" who suggested that my PT exercising was not helping, when I suggested I still have some pain. As someone above said, there is no cure.

I wore a Boston brace back in 1978-9 to stabilize my spine, and I was never given follow up. Now, 30 years later, I found out my curve has severely progressed. Not to undermine bracing (would I have wanted surgery? - no), but the point is to KEEP FOLLOWING UP. Had a begun core strengthening, spine stabilizing exercises sooner, I may have had less of a curve to deal with now. My Dr. is leery of surgery, even in my case, if I can manage the pain. Anyway, that's my story. Currently, finding what works. It's a daily challenge. Best to you.
ps: A huge THANK YOU to the President (Joe, was it?)-- on research and development of the Spinecor brace. I am interested in adult use of it. I am also interested in posture alignment - how do I stand that is best for me? Do I pull the higher hip down? My body twists and pulls in all directions, esp. my neck. I would love research / treatment for finding what is good for a body, and for being able to discern this without an annual x-ray. Thanks!!!

[debbei]

I think everyone dealing with scoliosis can all get a little agitated when challenged about their current method of dealing with scoliosis. We are all tired, in pain, frustrated, and somewhat angry. This is a condition for which no cures are found and research is underfunded. I myself have "gone off on someone" who suggested that my PT exercising was not helping, when I suggested I still have some pain. As someone above said, there is no cure.

I wore a Boston brace back in 1978-9 to stabilize my spine, and I was never given follow up. Now, 30 years later, I found out my curve has severely progressed. Not to undermine bracing (would I have wanted surgery? - no), but the point is to KEEP FOLLOWING UP. Had a begun core strengthening, spine stabilizing exercises sooner, I may have had less of a curve to deal with now. My Dr. is leery of surgery, even in my case, if I can manage the pain. Anyway, that's my story. Currently, finding what works. It's a daily challenge. Best to you.
ps: A huge THANK YOU to the President (Joe, was it?)-- on research and development of the Spinecor brace. I am interested in adult use of it. I am also interested in posture alignment - how do I stand that is best for me? Do I pull the higher hip down? My body twists and pulls in all directions, esp. my neck. I would love research / treatment for finding what is good for a body, and for being able to discern this without an annual x-ray. Thanks!!!

I think you hit the nail on the head. We should have been told back then, to keep following up every x number of years, and don't wait until almos 30 years later like I did. I was living fat, dumb and happy that everything was ok for years when it was progressively getting worse and worse without my knowledge.

[Pooka1]

I think you hit the nail on the head. We should have been told back then, to keep following up every x number of years, and don't wait until almos 30 years later like I did. I was living fat, dumb and happy that everything was ok for years when it was progressively getting worse and worse without my knowledge.

It seems likely they were laboring under the false notion that <50* at maturity means you can avoid surgery in your lifetime.

That claim needs to be revisited.

[LindaRacine]

It seems likely they were laboring under the false notion that <50* at maturity means you can avoid surgery in your lifetime.

That claim needs to be revisited.

I think we always need to remember that these studies essentially report what to expect on the average. There will always be individuals that don't behave like the average.

--Linda

[Pooka1]

I think we always need to remember that these studies essentially report what to expect on the average. There will always be individuals that don't behave like the average.

--Linda

I question the average person below 50* avoids surgery, if not for progression then for pain or other ancillary issues.