Almost six years after she was diagnosed with multiple sclerosis, Sharon Richardson heard that blockages in neck veins draining blood from her brain could have triggered the debilitating disease, which is marked by fatigue, weakness and pain. She quickly took to the web to investigate the theory, proposed by Dr. Paolo Zamboni, a vascular surgeon in Italy, in April 2009.
Two months later, Richardson was one of the first MS patients in the U.S. to undergo testing for the blockage, called chronic cerebrospinal venous insufficiency, or CCSVI.
"I had what's called a 'pancake vein,'" said Richardson, 68, describing the 3-inch stretch of flattened jugular vein that was apparently slowing the flow of used blood from her brain.
Drawing from a study of 65 patients in Italy, Zamboni concluded that inflating flattened, twisted or blocked veins in the neck with a balloon -- a technique called angioplasty commonly used to widen arteries narrowed by atherosclerosis -- improved MS symptoms. Despite the study's limitations -- it was small, unblinded and had no placebo group -- Richardson believed the theory made sense and had two wire mesh stents implanted into her jugular vein to puff it back out (the standard balloon angioplasty wouldn't hold in her 99 percent flattened vein).
She said she felt better instantly.
Zamboni's exciting but preliminary results and the personal testimonies of people like Richardson prompted MS patients worldwide to clamor for the unproven procedure, which costs about $10,000 and is not covered by insurance. But most neurologists agree it's too soon to tell whether clogged veins play a role in triggering MS, and whether Zamboni's fix, dubbed "liberation therapy," has a role in treating it.
"It certainly is an active area of debate," said Dr. Timothy Coetzee, chief research officer for the National MS Society. "As with many emerging areas in MS research, I'm hopeful that investing in research and exploring this hypothesis will give us the answer to the question, 'What is the role of CCSVI?'"
But some patients believe neurologists and other MS researchers have a financial stake in knocking down the CCSVI theory and keeping MS under their purview. Using online forums, they argue that MS drugs represent a multi-billion-dollar market that a simple one-time fix, such as unclogging neck veins, would squash. Some forums, including the Canadian MS Society's Facebook page, were even shut down after anonymous users posted nasty, threatening comments about liberation therapy skeptics.
The latest research, reported Friday at the annual American Academy of Neurology meeting in Honolulu, suggests that not everyone with MS has blocked neck veins, and not everyone with blocked neck veins has MS -- a finding that some researchers argue pokes holes in the CCSVI theory. But Richardson and her daughter, Carrie Rich, believe otherwise.
Rich, who accompanied her mom to every test and procedure, decided to have her neck veins tested. Sure enough, she had a blocked jugular vein just like her mom did. And although she showed no MS symptoms, a brain scan revealed hallmark MS lesions in her brain. Like her mom, Rich had a stent inserted to open the narrowed vessel. She remains free of MS but often wonders where she would be if she hadn't been tested for the CCSVI.
"I will always wonder, especially because it runs in my family," said Rich, 39.
Rich, a mother of two, said she'll one day have her children tested for CCSVI, too.
But Coatzee said it's impossible to conclude, based on a single case, that blocked veins cause MS and that treating them prophylactically might prevent it.
"I think it's very early in this process for us to make that leap," he said. "I think it's an important observation, and I think we should facilitate those studies."
Rich said she'll be disappointed if the CCSVI theory turns out to be wrong because she'll be back at square one: living with MS and not knowing what to do about it. But she has no regrets about having angioplasty.
"I don't know if having a stent in my neck means I'll never have symptoms of MS or that I won't get more lesions," Rich said. "What I do know is it makes sense to me. All of the research, to me, makes sense. A blocked vein can't be good, whether it's causing MS or not.
Richardson, who is president of the CCSVI Alliance -- an organization with the slogan "Opening veins, opening minds" -- agreed more research was needed to uncover the true role of CCSVI in MS. She said she never expected angioplasty to cure MS, but thinks it could ease some symptoms in certain patients.
In 2010, the National MS Society and the Multiple Sclerosis Society of Canada pledged a combined $2.4 million to examine the role of CCSVI in MS and, hopefully, lay the CCSVI debate to rest for good. But it could be a while before neurologists, radiologists and patients are all on the same page about CCSVI.
"Each study brings up more questions than answers," Richardson said, as she left her exercise class. "But more information is always positive."