sorry ForeignLesion, as I too often do, read quickly so misunderstood. AND i DO know where you are, for sure--just still not used to mixing with others in the same boat!
I am having the same problem, trying to get together info I need to convey to someone--it is in my field, I know the facts, but having a hard time getting it from the different sources and merging it into one smooth presentation.
I do have a deadline, and if I meet it, will then be freer to help you.
I'll check back here by Sat. eve, 30th Jan.
Meanwhile, a search here on site located this thread:
which I just went thru quickly-
Sharon suggested using the following, esp for neurologists:
http://msassociation.org/news_center/ar ... sp?a=ccsvi
Cheerleader elsewhere posted, and it was included in this thread, the test protocols http://www.facebook.com/notes/ccsvi-in- ... 5095842210
Fiddler posted this possible format for letter to drs on his blog
Saturday, January 16, 2010
Suggested wording of letter to doctors
Here is the suggested wording (slightly altered by me) for a letter developed by TiMS contributor GetActve to send to appropriate local doctors (perhaps especially interventional radiologists and/or vascular specialists):
Dear Doctor XXX,
As you might have heard the newest idea for MS treatment/cause is Chronic Cerebrospinal Venous Insufficiency. I have included an article from the MSAA's medical director about the idea (see link http://msassociation.org/news_center/ar ... sp?a=ccsvi
for a copy of the article). There is a lot of research going on about this right now.
It was so interesting to read today about the history of this research, starting in 1860 when a doctor said MS was a venous disease. Of special interest to me is the research of Dr. Putnam where he actually produced MS type lesions in dogs (1935) by compressing veins. He then tried to treat MS with blood thinners unsuccessfully, and his ideas were dropped as others have spent the last 70 years treating MS as an immune system disease.
Please consider treating these vein problems as Dr. Dake at Stanford and doctors in Albany NY, Italy and Poland have been doing. This is going to be a huge thing for the interventional radiologists to be involved in!
And below is a compilation Fiddler posted on the above mentioned thread:
Here is what I have on my blog so far:
Here is some information that could be provided by MSers to interventional radiologists, vascular surgeons, neurologists and family doctors who are interested in learning more about diagnosing CCSVI. If anyone knows of other or better links, please let me know.
Dr. Haacke's protocol for detecting CCSVI when using MRI/MRV: http://www.ms-mri.com/potential.php
Dr. Simka's protocol for Doppler Ultrasound is here: Simka Doppler protocol link and a paper describing the same here: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf
Another site is http://csvi-ms.net
which contains the following info (perhaps including links to Zamboni's protocols):
What should I give my neurologist?
Last modified: 13.09.2009 - 08:35 CET
I would like to inform my neurologist about CCSVI. What should I give him or her?
We recommend you give your neurologist the following material:
1. The PDF files of the bold written articles of
should be printed (the PDF links are at the end of the line),
2. the research foundation
should be mentioned since there are all the important articles of Prof. Zamboni listed,
3. and the information of the Bologna conference (08.09.2009)
Press release (Word)
should be printed out.
Optionally, a link to this website http://csvi-ms.net
could be added, as there are other important links listed and the site is regularly updated.
And a later addition (though perhaps a duplicate of other information):
http://www.facebook.com/notes/ccsvi-in- ... 5095842210
Anyway FL, I have no more time (or brain-energy either
)right now, but as I say, I'll be back--this is all centralized here now, so I (or someone else) can work it into better format--but I think it covers all you will need. And Pam hope this helps you also.
And of course, the sticky idea for the end product is great.