Nasha Smith (pictured) knows that skeptics would say her multiple sclerosis got better after an unorthodox treatment at Lankenau Hospital simply because she believed it would.
But the 40-year-old Reading resident also knows the "placebo effect" can't explain her transformation. Practically overnight, she went from being homebound - disabled by foot numbness, fatigue, balance problems, and painful bowel spasms that left her incontinent - to being able to complete a three-mile fund-raising walk for MS.
"I know there's a lot of controversy about this, but I don't know why," Smith said. "The procedure was so simple, yet life-changing."
The procedure, balloon angioplasty, is routinely used to open clogged heart arteries. But MS patients around the world are seeking what they call "the liberation procedure" to widen veins.
Groundbreaking research by an Italian vascular surgeon suggests that narrowed veins are common in MS patients, causing blood to drain improperly from the brain.
For a disease long blamed on out-of-control immune cells that attack the central nervous system, the blocked-vein theory is a radical departure - one that experts say remains speculative. To begin to confirm it, the National MS Society and the MS Society of Canada on Friday awarded $2.4 million to seven groups. They will study the diagnosis and frequency of poor vein drainage but will not treat patients who have the problem.
"We certainly feel the patients' sense of urgency," said Patricia O'Looney, vice president of the National MS Society. "But there are conflicting reports from scientists. The appropriate action is to bring clarity to the question" of whether veins play a role.
Patients are not waiting for more clarity. Dissatisfied with the marginal benefits and serious side effects of standard therapies, they are turning to interventional radiologists like Lankenau's Joseph Bonn, who treated Smith.
At least, until hospital lawyers step in.
In April, they ordered Bonn to stop performing balloon angioplasty on MS patients pending approval by officials at the Wynnewood hospital.
It's not clear who coined the catchy term liberation procedure, but it stems from the work of Paolo Zamboni, a vascular specialist at Italy's University of Ferrara.
While trying to help his wife's MS, he discovered that the three main veins that channel blood from the brain back to the heart - the jugulars and the azygos - are often twisted, bent, compressed, or otherwise constricted in MS patients. He gave this abnormality a distinctly uncatchy name, "chronic cerebrospinal venous insufficiency," or CCSVI. His first paper on the condition was published only a year ago.
Neurologists, the specialists who usually treat MS, as well as others, see holes in his out-of-the-box thinking.
For one thing, poor vein drainage doesn't bother everyone who has it. Zamboni found it in the majority of MS patients, and few of the healthy people he checked. But then he and University of Buffalo neurologist Robert Zivadinov did a larger study of 500 patients. CCSVI showed up in 60 percent with MS, 43 percent with other neurological conditions, and 22 percent of healthy controls.
Another thing: Not all MS patients get better after angioplasty. And the veins often re-narrow within a year. Zamboni found this happened in up to 47 percent of jugulars, although azygos veins usually stayed open.
Stanford University researchers tried to combat the re-narrowing with stents designed to prop arteries open. One patient needed open-heart surgery when the stent dislodged, and another died of brain bleeding while taking a blood thinner prescribed with the metal devices.
Still, Zamboni's maverick work offers a neat explanation for the central mystery of MS: why immune cells run amok, attacking nerves in the very body they are supposed to protect.
Zamboni found that blood backs up in the brain, or "refluxes," as it creates new drainage patterns to circumvent the blocked veins. Iron settles out of refluxing blood and, like toxic pollution, irritates delicate brain tissue. In theory, this signals immune cells to seep out of the blood and try to clean up the mess.
Normally, vessels in the brain are impermeable, so immune cells can't access that all-important organ. But the constricted veins develop high blood pressure, making them stretch and spring microscopic leaks. In theory.
Friday, June 18, 2010
Balloon angioplasty for MS controversial but praised by many people with MS
The first part of a story from The Philadelphia Inquirer: