CCSVI in New York Times Sunday Magazine

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

CCSVI in New York Times Sunday Magazine

Postby cheerleader » Fri Oct 26, 2012 4:25 pm

http://www.nytimes.com/2012/10/28/magaz ... wanted=all


some good, some not so good....but Paul had an interesting angle and a good story with his friend Adam's CCSVI treatment, and Adam's brother, the dubious neuro. And everyone likes a good story.

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Re: CCSVI in New York Times Sunday Magazine

Postby daniel » Sat Oct 27, 2012 3:49 pm

More press is good press
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Re: CCSVI in New York Times Sunday Magazine

Postby cheerleader » Sat Oct 27, 2012 5:16 pm

daniel wrote:More press is good press


you are correct, dear Daniel! We've got a bunch of new likes on the CCSVI in MS page, and I put together a new welcome with info and links in one note. The more patients press for independent research, the better for everyone.
https://www.facebook.com/notes/ccsvi-in ... 5276122211


As an interesting aside, I did some research into Adam G's brother, the Yale neurologist Dr. Christopher Gottschalk. Oddly enough, he's published research on slowed cerebral perfusion in cocaine addicts. I sent this in as a comment to the NY Times yesterday, but it was not accepted. Hmmmm. Well, here's the info:

It is interesting that Adam's brother, Dr. Chris Gottschalk, has published research on the impact of slowed cerebral blood flow in cocaine addicts, even using diuretics to increase blood flow in patients' brains, yet he is dubious about his own brother's improvements after venoplasty. Here is a report from Yale on the paper he co-authored.

"The patients in these studies with reduced blood flow to the brain had significant impairment in thinking, concentrating, reading and remembering things," Kosten said. "They also had significant depressive symptoms that may have been related to these deficiencies in brain functioning due to a lack of sufficient blood flow to the neurons."
He said increasing blood flow back to normal can reverse these cognitive impairments and make these patients more responsive to behavioral treatments, which require learning of new skills to refuse drugs. "These improvements in cognition can also enable these patients to return to productive employment and be active members of society," Kosten said.
http://news.yale.edu/2003/07/07/diureti ... ne-addicts
This seems to be an example of the cognitive dissonance we see in the MS world regarding the impact of hypoperfusion in MS.


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI in New York Times Sunday Magazine

Postby daniel » Sat Oct 27, 2012 5:24 pm

Joan... please don't ever stop being awesome.
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Re: CCSVI in New York Times Sunday Magazine

Postby MrSuccess » Sat Oct 27, 2012 5:47 pm

their silence is telling .....

well done , Ringleader ....



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Re: CCSVI in New York Times Sunday Magazine

Postby 1eye » Mon Oct 29, 2012 5:14 pm

Yes, we might be confused, refusing all the wrong drugs. Instead of refusing cocaine maybe we should be refusing DMDs. If only we could get better perfusion we might end up not spending so much on drugs!!!
"Try - Just A Little Bit Harder" - Janis Joplin
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Re: CCSVI in New York Times Sunday Magazine

Postby cheerleader » Tue Oct 30, 2012 8:14 am

The sad footnote in this story is that Adam did end up taking tysabri, per his brother's recommendation, and he ended up in the hospital, close to death. The writer does not mention if this was due to PML, but that episode surely has not helped Adam's health. You have to wonder how some of the "riskier" drugs contribute to disease progression. One eye's right...at least if you were a cocaine addict, you could get someone to study your perfusion levels at Yale.

My comment was published in the online NYT link yesterday, three days after submission. I hope researchers begin to address the issue of perfusion. Dr. Gottschalk obviously understands the importance of cerebral bloodflow. He spent ten years studying the changes in cognition in cocaine addicts, due to hypoperfusion from the vasoconstrictive attributes of cocaine. For those on Facebook who care to read the whole explanation, with links to Dr. Gottschalk's research and explanations of the changes in cerebral perfusion seen after CCSVI venoplasty by BNAC---here it is.
https://www.facebook.com/notes/ccsvi-in ... 6624242211
Am I my brother's keeper?
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI in New York Times Sunday Magazine

Postby Cece » Tue Oct 30, 2012 11:26 am

Paul Tullis is a freelance writer. This is his first article for the magazine.

I think Mr. Tullis did a decent job on a complex subject. Finding a CCSVI patient with a neurologist brother was a good hook.
He didn’t look at Zamboni’s studies or at any of the subsequent studies investigating CCSVI. “I was just kind of going on what other people were saying their experience was,” he said.

I think, as much as possible, anyone considering the procedure should read the research and not just the testimonials.
research is here: http://www.ccsvi.org/index.php/componen ... ask=search
testimonials: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16157.html
and negative testimonials: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic12342.html

But by page 2 of the NYT article, Chris has had the procedure and experienced some improvements. I would have liked to hear more about what he described as his improvements, and less focus on whether or not he was still using a cane or able to dance. CCSVI treatment does not always improve mobility impairments, but that does not mean that there aren't autonomic nervous system improvements, vision improvements, fatigue improvements, bladder improvements...things that might not be seen by the reporter, but which are either believed or not believed when the patient reports them.
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