Originally posted by Ballet Mom
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mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Can you post the link to such study?? I'd be very interested in it. Thanks.
http://www.ncbi.nlm.nih.gov/pubmed/14560201
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the current parameters ARE posted on the VBS site
you call the site a professional VBS forum (whatever that means)
You missed the non.
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Originally posted by Ballet Mom View PostYou state that curves should be less than 45 degrees. I believe they are much less than that at this point.
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.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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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.Last edited by Ballet Mom; 06-29-2009, 04:12 PM.
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Originally posted by Ballet Mom View PostPooka,
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.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by Ballet Mom View Postquote from txmarinemom
Proving Pooka's belief that most research is false for various reasons.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by Ballet Mom View PostI 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 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.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Originally posted by concerned dad View Post
(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.
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.
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Originally posted by concerned dad View PostMaybe he needs to hire a web guy to modify the site and is waiting to include it in the next update.
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.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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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.
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Faith vs Evidence
Originally posted by Pooka1 View PostNo 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.
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?
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Originally posted by mamamax View PostFaith 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).
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 :-)
How can there be faith over evidence when - to trust evidence alone - is to have faith in evidence?Last edited by Pooka1; 06-30-2009, 05:59 AM.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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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 -
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Originally posted by mamamax View PostMorning 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 -Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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