First research testing CCSVI theory

Yesterday, my feed from PubMed turned up what seem to be the first couple articles testing Zamboni's CCSVI hypothesis, from the Annals of Neurology:

Sundstrom, et al.:

To test this hypothesis, we studied 21 relapsing-remitting multiple sclerosis cases and 20 healthy controls with phase-contrast magnetic resonance imaging. In addition, in multiple sclerosis cases we performed contrast-enhanced magnetic resonance angiography. We found no differences regarding internal jugular venous outflow, aqueductal cerebrospinal fluid flow, or the presence of internal jugular blood reflux. Three of 21 cases had internal jugular vein stenoses.

Doepp, et al.:

Fifty-six MS patients and 20 controls were studied. [...] Except for 1 patient, blood flow direction in the IJVs and VVs was normal in all subjects. In none of the subjects was IJV stenosis detected. IJV and VV BVF in both groups was equal in the supine body position. The decrease of total jugular BVF on turning into the upright position was less pronounced in patients (173 +/- 235 vs 362 +/- 150ml/min, p < 0.001), leading to higher BVF in the latter position (318ml/min +/- 242 vs 123 +/- 109ml/min; p < 0.001). No differences between groups were seen in intracranial veins and during VM. None of the subjects investigated in this study fulfilled >1 criterion for CCSVI.

So it seems unlikely that MS is caused by CCVSI. Could it nevertheless be true that the "liberation" procedure cures, or at least alleviates, MS? Will anyone bother to find out?

UPDATE: Here's a link to a short Wall Street Journal piece about the impact of this research.

NYT on Zamboni "liberation"

Today's NYT presents a piece about the Zamboni "liberation" procedure as a case study in patient use of the internet:

The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.

“It’s eye-opening the way this group of patients has grabbed hold of the social-networking technology,” said Dr. Simon, an interventional radiologist at JFK Medical Center in Edison, N.J. “They’ve taken this to a level I’ve not seen in other patients. Patients used to read an article or two. Now, they’re actually seeing procedures on YouTube. Is this the future of medicine?”

If there was a cure for MS, I'd be in a hurry, too. But the only way to know if this CCSVI is for real is to wait for the scientists.

Try Googling 'CCSVI' and you'll find plenty of people who already want to sell you the miracle cure: No waiting! Top docs in India! A woman described in the NYT managed to pursuade an interventional radiologist in the US to perform the procedure, for about $10,000:

Although it was, technically, an experimental procedure, Dr. Simon said he did not have to ask his hospital for permission to perform it. The details were similar to other procedures that interventional radiologists do every day. It is not uncommon for them to take a device approved for one purpose and use it for another, like putting a bile-duct stent into a blood vessel — a practice called “off-label” use, which the Food and Drug Administration allows. Interventional radiology, Dr. Simon said, is an “off-label specialty” that depends on innovation and adaptability.