Under intense pressure from patients, some doctors are cautiously testing a provocative theory that abnormal blood drainage from the brain may play a role in multiple sclerosis — and 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.
"This made sense and I was hell-bent on doing it," says Nicole Kane Gurland of Bethesda, Md., the first to receive the experimental treatment at Washington's Georgetown University Hospital, which is set to 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 the procedure. When the University at Buffalo team started a larger study 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 evidence to guide his own patients' care.
"A lot of people are starting to go to fly-by-night places," he says.
Multiple sclerosis occurs when myelin, the protective insulation that coats nerve fibers, gradually is destroyed and scar tissue builds — impairing walking and causing fatigue and vision, speech, memory and other problems. It affects about 2.5 million people worldwide, including 350,000 Americans.
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.
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.
But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done.
The MS Society soon will announce funding for additional studies.