the bad news from stanford

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

the bad news from stanford

Postby Billmeik » Thu Dec 02, 2010 7:54 am

Dont know about you but it was pretty bad news to hear dake talk about his 24 patients

http://www.ccsvi.org/

all I'd heard was rumours from patients of a 20/20 score. The results he talks about were far more real world.

I liked the fantasy.
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Postby ConstableComfortable » Fri Dec 03, 2010 4:35 pm

Good video thanks for the link. If you've seen Haacke's latest 'pdf' it's daunting the amount of variations in this condition and the trials that are therefore needed to prove this.

Positive message from the Dake & Mehta though, they seem excited about this and full of energy
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Postby bruce123 » Sat Dec 04, 2010 7:19 am

I guess I missed something because I didn't find anything sad in this video. It was very educational and logical. I found that it makes the future look exciting. Unfortunately, the future won't arrive as fast as we would all like.

The only part that bothered me was when they talk about having patients pay their own way in blinded trials. It is sad that there is no government funding for these small trials and that people are being asked to pay thousands of dollars to be part of a trial.

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Re: the bad news from stanford

Postby drbart » Sat Dec 04, 2010 1:23 pm

Billmeik wrote:Dont know about you but it was pretty bad news to hear dake talk about his 24 patients

http://www.ccsvi.org/

all I'd heard was rumours from patients of a 20/20 score. The results he talks about were far more real world.

I liked the fantasy.


Bear in mind that Dake, although brilliant, was the first in this country and was learning along the way.

I personally know only one Dake patient, and her recovery was nothing short of spectacular.

My guess is that the difference between great and so-so results is that there is something else going on, eg other veins or whatever, with the latter group.

I can't wait to read Sinan's results from Kuwait.
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Postby cheerleader » Sat Dec 04, 2010 4:28 pm

Billmeik---
We had a great discussion going on this CCSVI Alliance exclusive video here:

http://www.thisisms.com/ftopict-14815.html

I hope you might read it and reconsider calling the news from Stanford "bad."

22 out of 24 patients have no new lesions at one year is pretty "good" in my book. It's actually been pretty freaking "great" in my family, where Jeff had over twenty brain lesions at diagnosis, and hasn't had any new ones since angioplasty. We need to let the doctors continue on and not characterize their work as good or bad. Right now, I'd just call it new and exciting---
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Billmeik » Sun Dec 05, 2010 4:26 pm

so if a person has no restenosis what are the complications caused by?
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Postby Billmeik » Sun Dec 05, 2010 6:54 pm

really I was just hoping someone would chime in with the good news. Now I wonder how many attacks there would be in the same group without the operation?
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