STEVE INSKEEP, host:
It's MORNING EDITION from NPR News. I'm Steve Inskeep.
Today in "Your Health," we'll hear about coping with chronic illnesses. We'll start with the debate surrounding multiple sclerosis. The conventional view is that MS is caused by a misguided immune system that attacks the nerves of the brain and the spinal cord. This can lead to muscle weakness, paralysis, even death.
But an Italian physician, Paolo Zamboni, says the disease is really the result of blocked blood veins, and that treating MS may be as simple as opening up those veins. Here's reporter Gretchen Cuda Kroen.
GRETCHEN CUDA KROEN: One day seven years ago, after a long walk with his dog along the Hudson River in Manhattan, Marc Stecker noticed he was limping. Not long after, he was diagnosed with multiple sclerosis.
Mr. MARC STECKER: Fast forward now, and my entire right side is pretty much paralyzed, and my left side is weakening.
CUDA KROEN: Stecker is now confined to a wheelchair, from where he writes a blog about his disease, called "The Wheelchair Kamikaze." More than a year ago, Stecker started writing about Zamboni's theory, which he calls chronic cerebrospinal venous insufficiency, or CCSVI. He hypothesizes that people with MS have narrowed or blocked veins that prevent the blood in the brain from draining back to the heart. The blood pools up, leading to inflammation, which in turn causes the immune system to attack the nerves in the brain and spinal cord. Stecker was hopeful.
Mr. STECKER: Because my disease is so aggressive, I have been very willing to be equally aggressive in trying to combat it.
CUDA KROEN: Stecker underwent a controversial treatment Zamboni calls the liberation procedure. His doctor inserted a tiny balloon inside blocked veins, to stretch the vessel walls open. It's a procedure called angioplasty, commonly used in the arteries of the heart but rarely used in veins.
Mr. STECKER: At first I was very skeptical, but anecdotal reports started coming through of almost miraculous results from it. So I decided that, you know, hey, it was worth a shot.
CUDA KROEN: But it didn't work. Although the doctor who treated him in New York found a significant blockage, he was unable to correct it, Stecker says.
Still, some would say Stecker was lucky. Many desperate patients have spent their life savings flying overseas to have the procedure, only to have it fail a few months later. Others elect to have tiny metal tubes, known as stents, placed in the veins to hold them open and have suffered serious complications, including life-threatening blood clots. Several patients have even died as a result.
Stecker says if he had it to do over again, he would have waited for more research, but he was anxious to try something that offered him the first real glimmer of hope for a cure.
Mr. STECKER: CCSVI equals hope, and a lot of MS patients just are completely devoid of hope. People don't want to have MS. They want to go back to who they used to be. You know, along comes this theory that offers an easy to understand solution so it's very, very, very seductive.
CUDA KROEN: It's so seductive, in fact, that Canadians and Americans with MS have been flocking overseas to get the liberation procedure, something that many researchers find very troubling. Robert Zivadinov, of the Buffalo Neuroimaging Analysis Center in New York, says that not only is the procedure unsafe and costly to many patients, it's impeding necessary research.
Dr. ROBERT ZIVADINOV (Buffalo Neuroimaging Analysis Center): Even if the treatment is not useful for patients with MS, I don't think that we can abandon the idea of vascular involvement in MS. And I think this merits very detailed understanding of what is going on.
CUDA KROEN: What is going on is still a bit of a mystery. Critics argue that although Zamboni's research suggests a vascular cause for MS, other studies don't. These discrepancies, and growing public controversy, prompted the Multiple Sclerosis Society to take Zamboni's claims seriously and fund a number of independent studies to investigate the relationship between CCSVI and MS.
Robert Fox is a neurologist at the Cleveland Clinic, currently overseeing one of the studies funded by an MS society grant. He says part of the confusion comes from variations in how CCSVI is measured.
Dr. ROBERT FOX (Neurologist, Cleveland Clinic): That's absolutely one of the potential problems in the previous studies - is, are the techs who got negative results, did they just not know how to do the ultrasound in the way that Dr. Zamboni described doing the ultrasound? And that's a very important issue.
(Soundbite of ultrasound exam)
CUDA KROEN: I watch while an ultrasound technician measures the veins in one of the patients in Fox's study.
Dr. FOX: I'll actually compress the neck; see how the vein collapsed? You can see the two walls come together, and you notice no clots in the vein. So that's good.
CUDA KROEN: Fox says he sent his technicians to a special training to learn how to properly measure the veins, because it's not something most technicians ever do. Meanwhile, in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging.
Dr. ZIVADINOV: CCSVI is not the cause of MS, but might be a consequence or a contributing factor to progression. And I think that has to be studied.
CUDA KROEN: Studying how the vascular system is involved in neurologic disease is an entirely new concept, argues Zivadinov - one that may have an impact beyond any single disease.
Dr. ZIVADINOV: What professor Zamboni discovered in terms of veins is something much bigger than multiple sclerosis, and we need to understand the role of the venous system in the pathology of the central nervous diseases and aging.
CUDA KROEN: Zamboni himself says that even if it turns out hes wrong, coming to a greater understanding of this disease would be the big reward both for him and thousands of MS patients.
For NPR News, I'm Gretchen Cuda Kroen in Cleveland.
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