From M.S. Patients, Outcry for Surgery - NYTimes.com

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From M.S. Patients, Outcry for Surgery - NYTimes.com

Postby CharW » Mon Jun 28, 2010 1:51 pm

Just wish they would not call it surgery! But good exposure none the less...
http://www.nytimes.com/2010/06/29/health/29vein.html WORD!
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Postby Cece » Mon Jun 28, 2010 2:13 pm

It is minimally invasive percutaneous venoplasty done under limited anesthesia. That's more of a mouthful than 'surgery' but more accurate with less frightening connotations.

ok, off to read the article....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ikulo » Mon Jun 28, 2010 2:27 pm

I think the key will be finding what causes the vein to become become stenosed after multiple balloons. Are there any drug treatments that somehow strengthen the veins so that they don't collapse again? perhaps that could be used in conjunction with the balloon treatment.
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Postby FlashHack » Mon Jun 28, 2010 2:41 pm

Thanks for posting this. I have already forwarded to about ten people. If you can, try to use the NYT web site to email it so that it will show up on their "Most Emailed" list. This will get it more exposure!
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Postby HappyPoet » Mon Jun 28, 2010 3:28 pm

Good article!

I especially love that our Dr. Sclafani was quoted. ^5, Doctor.

Also, I'm glad I learned about the nonprofit CCSVI advocacy organization Reformed Multiple Sclerosis Society--I love their name! Being in this article will be terrific for them.

Good idea, FlashHack.

Thanks for posting this, CharW.

~HP
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Postby thornyrose76 » Mon Jun 28, 2010 6:11 pm

Good too see this story is getting better coverage in the press stateside-The New York Times is a good start. I particularly appreciate the very last sentence.

"...patients should not be given unproven treatments outside of clinical trials. They said they did not disagree. But they also sympathized with patients who had progressive diseases and who felt they did not have the time to wait. “In the real world,” Dr. Eshkar said, “things happen at the edge of scientific proof.”
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Postby cheerleader » Mon Jun 28, 2010 7:23 pm

Some good, some bad, some....odd choices? (No CCSVI Alliance?) And there were a few factual errors, but mostly a positive.

It was presented as a very compelling story, certainly interesting and will no doubt get more MS patients and caregivers googling CCSVI. I really hope it gets more vascular doctors and interventional radiologists interested in testing and treating. The description of Neelima wheeling in the file cabinet full of research papers made me smile. We sure gave her a mountain of papers on the CCSVI in MS page :) The doctors and patients are learning together in real time, and it's a work in progress. Looking forward to the next chapter...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby FlashHack » Tue Jun 29, 2010 7:21 am

Just got the paper and what a spread! Front and center on page D1. Also this article is third from the top on the Times "Most E-mailed" list of articles. This is such great exposure. This may not be the turning of the tide, but I'll wager it is ticking off plenty of neurologists!!
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Postby CharW » Tue Jun 29, 2010 7:36 am

I think it is ticking off more than neurologists. Just read the on-line comments, and I am shocked by how close minded some people can be. At the very least do the research and then draw conclusions.
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Postby HappyPoet » Tue Jun 29, 2010 7:49 am

FlashHack,

Right now the story is #1 for both Most Emailed and Most Viewed!

:D :D

CharW,

Could you please post the link to the online comments? Thanks!

~HP
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Postby CharW » Tue Jun 29, 2010 7:57 am

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Postby HappyPoet » Tue Jun 29, 2010 8:00 am

Welcome CharW,

I just saw that you're new to TIMS.

Thanks again for posting the article. I wonder how many newspapers picked up the story for their paper circulation and/or their Internet websites.

I'm happy you found us, and I hope you keep posting! :)

~HP
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Postby CharW » Tue Jun 29, 2010 8:10 am

Thanks HP... TIMS is a great source of information, and we all should be informed!
Just noticed that they changed the heading to: "From M.S. Patients, Outcry for Unproved Treatment" No longer surgery...
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Postby Cece » Tue Jun 29, 2010 8:17 am

I like that change! I wonder if that's the title it ended up under in the print version?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby FlashHack » Tue Jun 29, 2010 8:24 am

Cece wrote:I like that change! I wonder if that's the title it ended up under in the print version?
Print version says "Surgery."
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