Posted: Mon Jun 28, 2010 8:46 pm
Thanks DRsclafani...no letters after my name, alas...and I enjoy the back-and-forth too.
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I sent you a CD with all of my tests. Feel free to use them if they are of any help to an atlas... I don't need to be named.drsclafani wrote:
I want to create a teaching atlas of the images of CCSVI. As long as i am grounded, i might as well make myself useful. Would you be interesting in sharing toward something like that?
Of course, there would be no identifying marks on images I put in the Atlas, no names, no dates, no hospital or doctor.. .Everything would be anonymous, unless you would like to be named as a contributor.
Sure. Let's talk...drsclafani wrote:marcmarcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...
Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?
want to co-author an atlas on imaging of CCSVI?
We are climbing Mount Everest!Dr. Paul Hebert, a critical care physician and editor-in-chief of the Canadian Medical Association Journal.
Though treatment advocates believe it is relatively risk-free, Hebert says manipulating fragile veins can be dangerous.
"We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die," he warns. "At some point it will happen because putting in vascular catheters is dangerous at the best of times."
Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.
Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.
"One would be dependent on the people doing the procedures to provide useful information. And the validity of the information provided by the people doing these procedures is not necessarily the kind of information that we would like from a scientific perspective."
Miller explains the procedures are mainly being done by interventional radiologists. They know about imaging vessels, but they may not know a lot about multiple sclerosis.
"So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."
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Dr. Dake asked the same question and is finding that as well.drsclafani wrote:Will all the drama of last week, i forgot to bring up another concept that Paolo and Fabrizio brought up during my visit with them.
CCSVI causes cerebrospinal venous collateral flow. One of the major pathways for collaterals is just upstream to the most common area of obstruction, down low near the point wheree the jugular vein connects with the subclavian vein. Among the many prominent collaterals are veins running through and around the thyroid gland. Is it possible to get "multiple sclerosis" of the thyroid gland because of this excess blood in the area? The answer i got was that it is quite possible.
So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?
It would be rather naive to expect MSS to support CCSVI going by their stance throughout ... the sooner we get out of MSS rut, the better the chances of ccsvi ...Squeakycat wrote:It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.
Their results have already been previewed in the Dutch and Germany studies coming out of the world of neurology. If you don't follow the protocols, you won't find the problems and we can all go back to life with expensive drugs with awful side effects that do little to stop progression of this nasty disease.
Dr. Aaron Miller, chief scientific adviser to the U.S. National MS Society, makes it clear in the quote below that the rantings of IR's will not provide the science necessary to make CCSVI acceptable.
Meanwhile, the editor of the Canadian Medical Association journal warns against the dangers of treatment.
We are climbing Mount Everest!Dr. Paul Hebert, a critical care physician and editor-in-chief of the Canadian Medical Association Journal.
Though treatment advocates believe it is relatively risk-free, Hebert says manipulating fragile veins can be dangerous.
"We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die," he warns. "At some point it will happen because putting in vascular catheters is dangerous at the best of times."
Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.
Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.
"One would be dependent on the people doing the procedures to provide useful information. And the validity of the information provided by the people doing these procedures is not necessarily the kind of information that we would like from a scientific perspective."
Miller explains the procedures are mainly being done by interventional radiologists. They know about imaging vessels, but they may not know a lot about multiple sclerosis.
"So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."
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And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?
I'm not surprised at all. This isn't the first time the NMSS has shown it's true colors. Look at what they could do for LDN, and yet they've done nothing. They first came out against it, with force, and then when TIMS posted to counter the NMSS stance, they changed their tune but have done NOTHING to further LDN research or to make it an established treatment for MS. Even though it does work so much better for so many, with NO risks and NO needles at very low costs. So here is something else nonPharma up to help MSers and they do the same dance.sbr487 wrote:It would be rather naive to expect MSS to support CCSVI going by their stance throughout ... the sooner we get out of MSS rut, the better the chances of ccsvi ...Squeakycat wrote:It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.
We are climbing Mount Everest!
And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?
Fantastic. Is that lemonade I smell?marcstck wrote:Sure. Let's talk...drsclafani wrote:marcmarcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...
Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?
want to co-author an atlas on imaging of CCSVI?
Who, pray tell, besides the people doing the procedure ever provide useful information? Isn't that the case in every published scientific experiment?Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.
Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.
"One would be dependent on the people doing the procedures to provide useful information.
...
if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."