NPR - January 31, 2011 |
by Gretchen Cuda Kroen |

One day 7 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.
"Fast forward now, and my entire right side is pretty much paralyzed and my left side is weakening," Stecker says.

Stecker is now confined to a wheelchair, from where he writes a blog about his disease, called Wheelchair Kamikaze.

More than a year ago, Stecker started writing about a theory Italian physician Paolo Zamboni proposed in 2008 called chronic cerebrospinal venous insufficiency, or CCSVI.

Its been thought that multiple sclerosis is caused by a misguided immune system that attacks the nerves of the brain and spinal cord and can lead to muscle weakness, paralysis and death. However, Zamboni suggests that the disease instead is the result of blocked blood veins — leading to inflammation, which, in turn, causes the immune system to attack nerves in the brain and spinal cord.

Zamboni proposed that treating it may be as simple as opening them up. Stecker was hopeful.

"Because my disease is so aggressive, I have been very willing to be equally aggressive in trying to combat it," Stecker says.

The 'Liberation Procedure'

To clear the veins, his doctor tried opening them with a tiny balloon. Zamboni calls it "the liberation procedure" but it is actually a common technique known as angioplasty when it's used to open clogged arteries — not veins.

"At first, I was very skeptical. But anecdotal reports started coming through of almost miraculous results from it.…So, I decided, you know, hey it was worth a shot," Stecker says.

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 says he was eager to try something that offered him the first real glimmer of hope for a cure.

"CCSVI equals hope and a lot of MS patients just are completely devoid of hope," Stecker says. "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."

Read more...