More media butchery

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

More media butchery

Postby CureIous » Sat Mar 31, 2012 11:11 am

Watching Fox news right now, they interviewed Dr. Samadi on CCSVI.
Not sure where he fits into all this, anyone?

He never once mentioned "CCSVI", said they have found "blood clots" in MS patients (collective groan please), but not to rush out and get treated RRMS has normal remitting phases yadda yadda.

Well at least they're trying to get in front of it now.

Who is this guy?
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: More media butchery

Postby Cece » Sat Mar 31, 2012 12:15 pm

http://en.wikipedia.org/wiki/David_B._Samadi

He's on Fox News Medical "A-Team."

Blood clots can be found in MS patients' jugulars as a complication AFTER they have had minimally invasive percutaneous endovascular treatment for the congential venous malformations found in many studies to be highly associated with MS. The rate of clotting may be as low as 3% according to Dr. Ferral's recent single center experience. True anticoagulants and proper sizing of the balloons and the use of IVUS are the best ways to prevent clotting.

But everyone except Dr. Saladi, Fox News, and those who watch Fox News already knows that.
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Re: More media butchery

Postby CureIous » Sun Apr 01, 2012 11:30 am

http://video.foxnews.com/v/1540504109001/studies-show-clearing-veins-could-ease-ms-symptoms

They've posted the video segment online for those interested.

Its Dr's like this that get under my skin. All camera and fluff, and light on the meaty stuff. Thank God the average MS patient has much more perception and intelligence than Dr's like this give credit for.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: More media butchery

Postby cheerleader » Sun Apr 01, 2012 7:56 pm

wow. Good find, Cure.
So much misinformation. Posted on FB to lots of groans from real pwMS.
He states that only women get MS, and CCSVI is about removing "clots from veins" (that's the procedure), and the studies presented at SIR are the very first ones. Yikes.
note the links to "related stories" under the video are for gilenya, and this doc is from Mt. Sinai....
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Re: More media butchery

Postby 1eye » Sun Apr 08, 2012 6:37 pm

I was a fairly long time between seeing anything in the media (tho I knew of it, most didn't) in Nov. 2009. There were no doctors anywhere I could get to in North America, and within weeks there were IRBs withdrawing and people being shut down all over, even though almost nobody offered anything, anyway. In Canada you couldn't even get Doppler ultrasound for a while. It seemed as if there was a concerted effort, at least here, to nip CCSVI in the bud. Thanks to a few courageous people you now have a lot of choices, possibly including bad ones :sad: . There may be people who are just cashing in, because it still costs a lot, compared to what the IRs have to spend (yes, IVUS is expensive but worth it), but remember that it's pretty new stuff, at least in these veins, and everybody involved has to weigh risks, including IRs. It may be minimal but it's still invasive, and things go wrong sometimes.

Anyway can I reiterate that only going by what you see on TV is a mug's game. On the other hand, I have learned a lot on TiMS and met some of the contributors from Canada and the US, who seem to be pretty discriminating, informed people, including the non-MS sufferers.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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