WASHINGTON – Under intense pressure from patients, some U.S. doctors are cautiously testing a provocative theory that abnormal blood drainage from the brain may play a role in multiple sclerosis – and that a surgical vein fix might help.
If it pans out, the approach suggested by a researcher in Italy could mark a vast change for MS, a disabling neurological disease long blamed on an immune system gone awry. But many patients frustrated by today’s limited therapies say they don’t have time to await the carefully controlled studies needed to prove if it really works and are searching out vein-opening treatment now – undeterred by one report of a dangerous complication.
“This made sense and I was hell-bent on doing it,” said Nicole Kane Gurland, of Bethesda, Md., the first to receive the experimental treatment at Washington’s Georgetown University Hospital, which is set to closely track how a small number of patients fare before and after using a balloon to widen blocked veins.
In Buffalo, N.Y., more than 1,000 people applied for 30 slots in a soon-to-start study of that same angioplasty procedure. When the University at Buffalo team started a larger study a few months ago just to compare if bad veins are more common in MS patients than in healthy people – not to treat them – more than 13,000 patients applied.
The demand worries Georgetown neurologist Dr. Carlo Tornatore, who teamed with vascular surgeon Dr. Richard Neville in hopes of getting some evidence to guide his own patients’ care.
“A lot of people are starting to go to fly-by-night places,” Tornatore said. Doing this research takes time, he said. “It’s a marathon, not a 100-yard sprint. We have to be very careful.”
A condition with an unwieldy name has become the hottest topic of debate in MS: Chronic cerebrospinal venous insufficiency, or CCSVI. An Italian vascular specialist, Dr. Paolo Zamboni, was hunting ways to help his wife’s MS when he discovered that veins carrying oxygen-depleted blood down the neck or spinal cord were narrowed, blocked or twisted in a group of patients. Zamboni reported that made blood back up in a way that might be linked to MS’ damage, by causing tiny leaks of immune cells into the brain that start a cascade of inflammatory problems.
Then came the step that spread excitedly through MS patient Internet forums: In a pilot study, Zamboni’s team used balloon angioplasty – similar to a longtime method for unclogging heart arteries – to widen affected veins in 65 patients. He reported varying degrees of improvement, mostly in patients with the relapsing-remitting form of MS who experienced fewer flare-ups over the next 18 months and some improvements in quality of life.
But nearly half had their veins relapse, and Zamboni urged a larger, more controlled study be done.
Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people, said lead researcher Dr. Robert Zivadinov.
Like many neurologists, Georgetown’s Tornatore watched the developments with a mixture of skepticism and curiosity. After all, decades ago some doctors first suggested circulation might play a role. The scars tend to cluster near veins, and blood-thinning treatment was tried before immune-targeting drugs were proven to help many MS patients.
He ticks off the possibilities: This could be a blind alley, like so many to befall MS over the years. Or it could work a little. Or it might be revolutionary.
“I have no idea. I’m not predisposed to any of them,” Tornatore said.
But he and Neville decided angioplasty was the least risky option for a limited test. In 30 patients who’ve undergone a $400 ultrasound exam so far, about half have evidence of the vein abnormality.