• WEATHER ALERT Winter Weather Advisory

Bay Area women participate in MS treatment

August 10, 2010 7:26:39 PM PDT
Bay Area researchers will soon be joining the effort to examine a controversial treatment we told you about earlier this year. The therapy is for multiple sclerosis, but it's unlike any of the drug treatments currently in use. Instead of approaching MS as a neurologic or autoimmune disorder, some researchers believe there could be a vascular connection.

Carol Schumacher, Michelle Jordan and Simone Biase just returned from an east coast trip, but they weren't taking a vacation. The women flew to Baltimore together to receive an experimental treatment.

"We wanted to make sure each one was making a mature independent decision, but what a joy to be able to share it," Schumacher said.

All three women suffer from multiple sclerosis. The decision they shared was to undergo a controversial procedure, based on a theory known AS CCSVI -- or "Chronic Cerebro-Spinal Venus Insufficiency."

Its backers believe the symptoms of MS are caused by blockages in cranial blood flow.

To increase blood flow around Carol's neck and brain, doctors performed an angioplasty, ultimately placing a stent in her left jugular vein.

"I definitely feel better. I'm not as profoundly better as my friends are, I'll let them tell you," Carol said.

"The stiffness in my legs is like feels gone," Simone said.

"It's the craziest thing. My husband and I can't believe it," Michelle said.

Jordan, a mother of two, says ms had forced her to use a wheel chair for trips outside her home. She also received the angioplasty.

"I'm walking up and down the stairs, and it's no problem," she said.

All three women consider their treatment a success. That's despite the fact that much of the research community remains skeptical about CCSVI, pointing out that patient's desperate relief can often experience a placebo effect.

ABC7 first reported on the CCSVI therapy earlier this year, when a surgeon at Stanford who helped pioneer the technique stopped performing the procedure, saying he would wait to complete a clinical trial. And since that time, there has been an intense push to learn whether the science behind the procedure is real.

"I think that's the first step. If it's not a real phenomenon, then I think you can forget the notion of doing surgery" Dr. Douglas Goodin from the Multiple Sclerosis Center at UCSF said.

Goodin is also on the board of the Multiple Sclerosis Society, which recently awarded nearly $2.5 million in research grants, to study blood flow in ms patients.

"If this really were a cure, it would be very exciting for the patients. The problem is that it has not been established as a valid factor in the cause of multiple sclerosis," he said.

He says the MS Society was motivated in part, by the explosion in clinics now offering the procedure which is being dubbed liberation treatment and patients willing to travel across the country and across the world to get it.

Goodin expects to have data from the blinded trials, in about a year.

Meanwhile, Dr. Michael Dake, the Stanford researcher who helped develop the CCSVI procedure is now preparing to launch a clinical trial of his own.

Simone, Carol, and Michelle are organizing an independent fundraising event, to help with some of the costs.

"It's important that we support trials, and everything is done in a way that it becomes accepted in the medical field," Simone said.

And while they wait for results, the three women are believers in the relief they say they've found from a disease that threatens to cripple their bodies.

Last week, researchers in Sweden and Germany released data from two studies on CCSVI. Both groups said they were unable to find evidence of any vascular change in the ms patients they studied.

Information about fundraiser:

Sam's Log Cabin Restaurant
945 San Pablo Ave.
Aug. 14, 6:30-8:30 p.m
Albany, California
Suggested donation:
$150

Written and produced by Tim Didion

Load Comments