Supporters of new medical procedure for multiple sclerosis hold fundraiser in Albany

Supporters of new medical procedure for multiple sclerosis hold fundraiser in Albany
By Damin Esper
Correspondent
Posted: 08/05/2010 09:55:51 AM PDT
Updated: 08/05/2010 10:30:20 AM PDT


Michelle Jordan was diagnosed with multiple sclerosis nine years ago. The disease, which can progress at different rates in different people, ravaged her. She has a picture of hiking with her daughter when the girl was 4 years old. Now, her daughter is 10. And Jordan has been confined to a wheelchair when she ventured outside.

Until two weeks ago.

The Albany mother of two traveled to Baltimore to undergo angioplasty -- a common treatment for people at risk for cardiovascular disease but relatively new for MS patients.

"I wasn't expecting any kind of improvement, I was just hoping not to get any worse," Jordan said. "I immediately started to get better. I used to sleep two or three hours every afternoon. It wasn't an option, I would just collapse. I haven't done that in two weeks now. When I was walking, my foot would drag and turn sideways and make it really hard to move and now it doesn't. Before, I would look at my foot and say, 'Lift up and turn straight.' I couldn't do it."

Jordan, 45, was able to get up from her wheelchair and walk to her mailbox.

"A few days ago, I dusted off my walking sticks which I haven't used for months," she said. "Today I dusted off my cane. And I haven't touched that in I don't know how long."

Albany resident Carol Schumacher has also undergone the procedure. She was diagnosed eight years ago and remodeled her house in anticipation of her needing a wheelchair.

"I don't think I will


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ever need a wheelchair now," she said. "I feel a lot stronger. I just started physical therapy and I cried I did so well."

The procedure is officially known as Chronic Cerebrospinal Venous Insufficiency (CCSVI) treatment. CCSVI refers to the blockage of veins that drain the brain and spinal cord common in many MS patients. The condition causes blood reflux and brain damage.

It is hoped that using angioplasty on the jugular and azygous veins might help relieve the symptoms of MS.

However, it hasn't had a clinical trial yet in the United States. To raise awareness of the treatment's promise and to raise funds to help support a clinical trial, a local group called the CCSVI-MSketeers are hosting a dinner on Aug. 14 at Sam's Log Cabin Restaurant in Albany.

For a suggested donation of $150, attendees will get dinner, live music and a talk from Stanford professor of cardiothoracic surgery Dr. Michael Dake, a leading proponent of the procedure.

The CCSVI theory was first popularized by an Italian doctor named Paolo Zamboni. It has generated quite a bit of buzz on message boards dedicated to MS.

However, it also contradicts the long-standing belief that MS is an autoimmune disease, classifying it as a vascular disease.

Zamboni published a nonclinical study documenting the blockages in the jugular and azygous veins in the Dec. 2008 issue of the Journal of Neurology, Neurosurgery and Psychiatry. He then began treating patients with what he called the "Liberation Procedure" -- otherwise known as angioplasty.

Dake reportedly met with Zamboni in Europe, then returned to the United States and began promoting the procedure.

Dake was unavailable for comment.

Schumacher is organizing the fundraiser along with her son, Sam.

The 55-year-old mother of three and grandmother of two was working on party favors earlier in the week.

Although she knows the treatment is experimental and hasn't been put through a peer-reviewed, double-blind trial, she's feeling optimistic about her condition for the first time.

"It's very profound," she said. "I'm trying very hard not to count on it and invest too much in it. I know this is new and there could be setbacks. Some in our group have done well and not done well again.''

"It was life-altering (being diagnosed) and this is life-altering in the opposite direction. It's astounding how much I didn't think I could hope again."

If you go
What: MS Research Fundraiser
When: Aug. 14, 6:30-8:30 p.m.
Where: Sam's Log Cabin Restaurant, 945 San Pablo Ave. Albany
Suggested donation: $150
Information: Carol Schumacher 510-367-1096; Ccsvi.msketeers@gmail.com