Separate forum for CCSVI?

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Separate forum for CCSVI?

Postby cheerleader » Sat Mar 14, 2009 7:45 am

To TPTB....
The Zamboni/CCSVI thread in the general forum has become a bit unwieldy. Can we have a separate forum for it? Now that folks are going out and getting dopplered, it would be a good resource for international investigation and protocol. As well as theories regarding the cause of stenosis in the venous systems of MS patients.

Pretty please???
Thanks,
AC
Last edited by cheerleader on Fri May 01, 2009 10:08 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Separate forum for CCVI?

Postby NHE » Mon Mar 16, 2009 8:07 pm

I have forwarded this request on to the site's administrators. It's in their hands now.

NHE
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Postby cheerleader » Tue Mar 17, 2009 2:39 pm

Thanks so much, NHE!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Mar 18, 2009 4:28 pm

Hey I second it and this is how I suggest we might possibly set it up:

what if we have a sticky at the top with JUST links directly to the Zamboni papers and related papers?. I'm wearing my fingers to the bone looking up the online links to the same papers we keep referring to, it'd be so much better if we could say Zamboni '08 page 4 or whatever.

It could be like this:
Zamboni et al 2006 "The Big Idea; Iron dependant inflammation in MS"(make that a link)
This paper is the first one in which the theory about how MS lesions could potnetially be caused by a mechanism related to venous backjest is explained.

Zamboni et al 2007 "The .....

I will volunteer to go through the huge thread and mine the links if everyone agrees that is the way to do this best

as a crazy idea if we had a poll on it, it could be if you have had dopplers or referral for dopplers, did you a: speak to your neuro and get a referral for dopplers from him b: speak to your neuro and get no help, then seek care from a vascular specialist on your own c: seek care from a vascular specialist directly d: speak to another physician for referral (ie primary care)

The poll would perhaps make it easier for future people to decide how to go forward in terms of who to seek care from. MY GUESS is that few people seeking advice from neuros will get any help, and if we have a poll, unscientific as it is then people won't waste their time at the neuro if they are interested if it seems no neuro's are interested. It's just a thought I won't be the least bit bothered if it is a no go!
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Postby cheerleader » Fri May 01, 2009 10:11 am

Thanks to NHE and Aaron for setting up a separate thread.

I wanted to mention that I mistakenly called this diagnosis CCVI when I first posted back in December.

It is actually CCSVI...for chronic cerebro spinal venous insufficiency. I've corrected it in my own posts.
If it could be corrected in the heading, it will help direct people to the right forum, if they do a google search.

Thanks so much!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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