Thursday January 18th 2018

MS controversy: Inflating veins, deflating symptoms

About 400,000 people in the United States are prisoners in their own bodies because of Multiple Sclerosis.

MS is an autoimmune disease affecting the brain and nervous system, causing nerve impulses to be stopped or slowed. Now, patients are traveling hundreds, even thousands of miles, for a controversial treatment that’s only performed by a few doctors in the U.S.

“I was 25 years old when I was diagnosed with MS,” said Barbara Garcia, 48. A year ago, she couldn’t get across the room without a walker or wheelchair. Multiple sclerosis was taking its toll physically and mentally.

“It was like, ‘Why me?’ I’ve been trapped in an old person’s body forever. There’s been no quality of life,” Garcia said.

Tests showed Barbara had a narrowing in the jugular veins that some say is associated with MS. When Dr. Bulent Arslan at Moffitt Cancer Center & Research Institute in Florida saw her tests, he agreed to do an experimental MS procedure called venoplasty for chronic cerebrospinal venous insufficiency — or CCSVI. Dye is injected into the jugular veins to locate the narrowed area. Then, similar to an angioplasty, a balloon’s inserted into the vein and inflated to improve blood flow from the brain toward the heart.

“We do that until we get enough improvement in the vein and the flow so that blood flow is not restricted, and she started showing improvement on the table, which I did not believe at the time,” Arslan said.

“He said, ‘Let’s see if you can walk,’ and sure enough, I was able to get up and walk around the bed,” Garcia said.

Now, Garcia can do a lot more than that — like take care of her granddaughter — even vacation in Spain. But some doctors still believe the short- and long-term benefits of balloon venoplasty are being blown out of proportion.

“We need to make sure this procedure works, make sure it’s durable, find out more about it,” said Dr. Bruce Zwiebel, an interventional radiologist at Tampa General Hospital.

Being free of a walker or wheelchair is all the proof Garcia needs.

Garcia’s case was the first of 120 of these procedures for Arslan. Venoplasty is not a cure, but he says 70 to 80 percent of his MS patients whose tests confirm CCSVI show improvement after treatment. More than $2 million has now been committed to study the procedure in the U.S. and Canada.

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