MS back in the spotlight

Zamboni and various experts are discussing standards for diagnosis—and turning their eye to other vascular diseases

MS back in the spotlight

Alessandro Vincenzi

Paolo Zamboni is finally relaxing in a chair in his hotel room in Bologna, Italy, reflecting on the long day of rigorous research presentations, all part of this week’s inaugural annual meeting of the International Society for Neurovascular Disease (ISNVD), of which he is the president and mobilizing force. The gathering of the new interdisciplinary group of scientists—among them vascular surgeons, interventional radiologists, physicists and a few neurologists—represents a fresh focus on the overlooked role of the vascular system in neurological conditions. It’s a timely endeavour, given the aging population. “I think we let in a little new light,” the thoughtful and mild-mannered Italian doctor says gently.

Much of that wattage, predictably, falls on chronic cerebrospinal venous insufficiency (CCSVI), a condition Zamboni identified that is characterized by blockages in the neck and chest veins. It was in this Italian city, in October 2009, that the former vascular surgeon first publicly presented his research linking CCSVI with multiple sclerosis patients. That, in itself, wasn’t groundbreaking: vascular theories of MS predate its classification as an autoimmune disorder. What made headlines, and inspired rare hope among MS patients, was Zamboni’s claim that angioplasty to restore blood flow resulted in symptoms abating, sometimes dramatically.

Eighteen months later, CCSVI is a hot, and incendiary, topic. The medical establishment has shown resistance and skepticism; many neurologists dismiss Zamboni’s hypothesis as spurious and unproven. But that hasn’t prevented an estimated 10,000 MS patients from seeking treatment at clinics springing up internationally to meet demand.

Meanwhile, as evident in Bologna this week, a CCSVI community has formed, manifesting all of the tribal habits of any new society. A pecking order is unfolding, a language defined. Establishing consistent standards for CCSVI scanning and diagnosis was the first matter of business on day one, as the 40 founding members reached a consensus on protocols. “There was a lot of testosterone in the room,” one woman present observed. Over the next two days, an audience of more than 300 listened to 39 research submissions with such titles as, “Hyperfusion of brain parenchyma in CCSVI” and “Risk factors in vascular dementia.” Much talk and debate ensued over the minutiae of imaging methodology and clinical protocols.

And new territory was forged. Zamboni says he was buoyed by repeated findings that identified CCSVI in more than 90 per cent of MS patients. San Diego neurologist David Hubbard announced preliminary findings that quantified positive post-CCSVI treatment results, the first clinical proof they aren’t merely a “placebo effect.” Albany, N.Y., vascular surgeon Manish Mehta revealed the first double-blind CCSVI treatment study of 150 patients showing marked improvements across measures ranging from mobility to quality of life. Physicist Mark Haacke, regarded here as the Picasso of state-of-the-art imaging, weighed in with blood-flow measurement analysis that provides clues to why some people benefit more from CCSVI treatment than others.

The meeting was all about blood flow, both literally and conceptually. Buffalo, N.Y., neurologist Robert Zivadinov observed CCSVI is not unique to MS, a concept echoed by other scientists studying vascular formation in neurodegenerative diseases—Parkinson’s, Alzheimer’s and ALS. Imaging revealed similarities in MS and Parkinson’s lesions, The overall effect was Rashomon-like, as findings informed and contradicted one another. “I feel like a kid in a candy store; there have been so many disclosures,” Mehta said.

Zamboni views the ISNVD as “a genuine academic and cultural movement determined by people and by results.” Board members pay their own way, he says; there are few sponsors and none of the high-roller extravagance seen at many medical meetings.

That may be, but booths set up outside the presentation hall reflect the emerging CCSVI industry. One of the meeting’s sponsors, medical imaging conglomerate Esaote International, is selling the $73,000 Echo Doppler, billed “the only product designed for the diagnosis of CCSVI.” Another for Bard Peripheral Vascular displays the latest in angioplasty balloons.

The fact that there’s potentially big money to be made here, ironically, only reinforces the need for the kind of dialogue and debate evident in this medieval Italian town this week: we may now be in the 21st century, but mysteries of the human body still remain to be revealed.

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