Detroit — Soon after Robert Tyranski was diagnosed with multiple sclerosis, he volunteered to let a local researcher take thousands of images of his brain and neck.

The images will be used to examine a new phenomenon that has generated enormous debate in the MS community, especially in Detroit, where two high-profile Wayne State University researchers represent both sides.

Discovered by an Italian doctor, the theory's premise is that some MS patients have narrowed veins that impede blood flow in the brain and spinal cord. Symptoms could be relieved with a treatment similar to angioplasty, typically used in heart patients. A vast departure from conventional drug therapy, the theory has yet to be scientifically validated and some doctors are cautioning against it.

But many patients consider it a breakthrough and are traveling to other states to get treated for the phenomenon known as chronic cerebrospinal venous insufficiency, or CCSVI.

"It gives me a lot of hope," said Tyranski, a Livonia resident, echoing sentiments of others with the disease that damages nerves of the brain and spinal cord.

In 2009, Italian Dr. Paolo Zamboni coined CCSVI in the Journal of Neurology, Neurosurgery & Psychiatry after his wife was diagnosed with MS and he discovered old research suggesting the brain's veins might be a factor in t

"We have identified a new factor completing the complex mosaic of multiple sclerosis," Zamboni said via e-mail. "Not only that, but we have identified a system to diagnose and treat that factor. Preliminary results look promising."

Reports of Zamboni's work went viral on the Internet and hopeful patients began discussing the research and the treatment on social media sites. Heated debate ensued among researchers, including the two researchers at WSU.

Studies conflicting

Among the most vocal critics is Dr. Omar Khan, director of Wayne State's MS Center at Harper Hospital. He argues that Zamboni's initial study is suspect because nearly all of the MS patients had CCSVI, while none of the healthy patients did.

"Even if 1,000 people smoked cigarettes for 100 years, at 20 cigarettes a day, not all 1,000 people will get lung cancer," said Khan. "So when you present these kinds of percentages, it raises a lot of interest in the sense that the numbers are very impressive. But are the facts biologically true?"

Several studies have since refuted the findings, said Khan, who has debated Zamboni publically, warned patients against the experimental treatments and published journal articles questioning CCSVI as "science or science fiction."

But others contend the theory is a breakthrough with tremendous implications for MS treatment, and maybe other diseases.

One of the most visible proponents is E. Mark Haacke, head of the Magnetic Resonance Research Facility at Wayne State. As a researcher of veins who invented a new technique for imaging them, he has traveled the globe to give technical seminars on CCSVI and begun studies of blood flow of the small veins in the brain.

Haacke said the studies challenging Zamboni's work are small and didn't use the same technology as Zamboni. Scientists are still trying to understand the theory, he said, as thousands of patients have received the alternative treatment and reported their symptoms improved.

"When you are looking at 3,000 people who have been treated and the (doctors) find abnormalities in most of these people, it's kind of hard to refute that," Haacke said. "The problem is that many of these people are not publishing their results so you're only getting the word at conferences, but they haven't published yet."

Meanwhile, patients who have sought to discuss the phenomenon with doctors complain of getting brushed off.

"I've had the phone hung up on me," said Dana Dernberger, a Holland resident with MS. "I have been told by an MS specialist in Detroit that it is basically junk science. It feels like an underground therapy."

Similarities to acupuncture

Dr. David Williams of the University of Michigan has conflicting feelings about CCSVI after treating one patient. As an interventional radiologist, he routinely opens up veins of patients who suffer from blockages and experience severe symptoms.

He is skeptical of the theory because the blocked veins in MS patients are very minor compared to ones in the patients he treats. At the same time, he said he can't ignore stories of patients who say they've been helped by his colleagues.

Williams didn't think he did much for an MS patient whose veins he recently dilated — veins that weren't very narrow. But the patient let him know soon after that her symptoms had improved dramatically.

Even though he didn't understand why the patient got relief, he compared the effect to acupuncture.

"We don't really understand all the physiology and anatomy in that response and yet people get responses to acupuncture even though we don't understand all the pathways," Williams said. "So I am prepared to accept that there may be some things like that in this (treatment)."

Patients travel for treatment

The debate about Zamboni's theory has lead the MS societies in the United States, Canada and Italy to invest $3.4 million in research to determine the theory's validity.

Meanwhile, MS patients are seeking treatments and paying out of pocket because insurance companies are not covering the costs, which can range up to several thousand dollars.

Although most would like to stay in Michigan, patients are traveling to other states because no interventional radiologists are offering the experimental treatment here.

Phil Harding plans to go next month to New Jersey to get treated. Diagnosed with MS in 2002, Harding now uses a wheelchair.

Though he studied biochemistry in graduate school, the Ann Arbor resident said science is slow to benefit human health and he is unwilling to wait.

"I personally don't have 10 years to wait for good science to happen," said Harding, 58. "I would like to experience some improvement rather than just getting worse. If I did nothing, I would just get worse."

kkozlowski@detnews.com

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