MS patients seek treatment that promises 'liberation'

MS patients seek treatment that promises 'liberation'
SEATTLE -- It's a movement among patients that is unprecedented. People with multiple sclerosis are demanding access to a treatment they believe can stop the progression of the disease, even erase the devastating symptoms. They call it the liberation procedure, and it's being fueled by personal accounts and posts on the Internet.

YouTube and Facebook are flooded with the stories of MS patients before and after "liberation," jumping, jogging and leaving wheelchairs and walkers behind. Many report great improvement in MS symptoms.

Italian doctor Paolo Zamboni from the University of Carrera ignited the fire with the theory that MS may not be an autoimmune disorder, but instead the result of abnormal blood flow to and from the brain.

"I found the evidence of narrowing of the vein just in MS patients," said Zamboni.

The theory is called Chronic Cerebrospinal Venous Insufficiency, or CCSVI. The idea is because of strictures or blockages in the veins that drain blood from the brain and spinal cord, the blood backs up in the brain, creating dangerous iron deposits and eventually lesions that cause the symptoms of MS.

"I thought, well, if they're blocked, you open them. So I had them opened and I had immediate and profound relief," said Kathleen Lynch of Seattle.

Lynch travelled to Egypt for a venoplasty, a procedure in which a balloon is inflated within the constricted veins, relieving the backflow, or reflux of blood to the brain.

She describes the disappearance of her MS symptoms like headache, fatigue, brain fog and coldness in the hands and feet.

The accounts have helped create a legion of MS patients demanding to be tested and treated for CCSVI.

"When you see in your doctor's office a 3D image of your brain and only 10 percent of the blood is getting through that vein, it's a eureka moment! You know that needs to be fixed; you can't sit there and do nothing," said Blake Lemberg, another MS patient who says his symptoms almost disappeared after he was treated for CCSVI at Stanford. But that program was shut down after a patient died from rare complications of the procedure.

MS patients in the Seattle area, who've connected through Facebook, say most neurologists won't recommend the treatment, forcing them to travel, sometimes to faraway clinics to get it.

"I went to Egypt by myself for my angioplasty, never been there, seen the hospital, or met the doctor. People said, 'Oh, you're brave,' and I said, 'No, just desperate,"' said Lynch.

But Dr. James Bowen, who's been treating MS patients in Seattle for 27 years, says the theory is problematic. He says it's difficult to explain how blockages in the neck could affect so many parts of the body that are affected by MS, like the eyes.

"The theory has limitations, but as scientists, it's very important to keep an open mind. To embrace CCSVI would require us to scrap the old theories. Science, in general, and my colleagues - we're more than willing to throw away old theories and adopt new ones if sufficient evidence can be raised to support that," he said.

Bowen says the CCSVI theory is generating excitement like other possible cures that come along every two or three years, though this has gotten more attention because of the Internet.

"A lot of the excitement about this has been pushed not by the scientific literature as it has by the social media and patients getting together and getting excited about this," Bowen said. "The danger this time, a lot of the legitimate concerns of the scientific community have been viciously attacked in the blogs and the other social media outlets. Rather than expanding the discussion it has shut down a lot of scientific discussion of this, which is really unfortunate." (Watch entire interview with Dr. Bowen)

Most neurologists say they need data and controlled studies on the vascular theory to be sure results aren't just the placebo effect. They say they first need studies to show if MS patients have more blocks than other people. Until then, they can't recommend the angioplasty for CCSVI.

But patients say they can't afford to wait years for double blind studies and will go wherever it takes to be tested and treated for CCSVI. Many from Seattle are headed to San Diego to be "liberated."

Tarah Virgil and Danielle Rhéaume are among them. They met through the Seattle Facebook site for CCSVI.

Virgil was disabled six years ago with migraines, vision problems, fatigue, pain, and muscle spasms from MS. Rhéaume's diagnosis in May helped explain the physical pain and emotional problems she'd been suffering.

They were both diagnosed with CCSVI by neurologist Dr. David Hubbard, who learned of the CCSVI theory when his son was diagnosed with MS.

"It became clear to me the theories and treatments for MS were unproven and ineffective," the doctor said.

Hubbard's son says his symptoms disappeared after he was treated for CCSVI.

"I used to not be able to stand on one foot. I was irritable and tired all the time. I don't have any symptoms now," said Hubbard's son, Devin.

Virgil and Rhéaume say the procedure at a San Diego vein clinic was simple and painless.

" I don't think people should be fearful of this procedure at all. For me, I was more fearful of living with this disease progressing," Rhéaume said.

"If you compare it to the treatments I've been on to try to lessen my symptoms or slow the progression of my MS, I'm not scared of the risks. It's really nothing compared to the risks of the other things I've tried", said Virgil.

We visited both women seven weeks after they were treated for CCSVI. They report different results.

Rhéaume says she feels about 85 percent better.

"I feel a lot of major improvements. My fatigue is definitely gone, I almost have too much energy. My tremors have greatly reduced. My pain medicine is about half what it was. I'm not as sensitive to temperature changes, and my mental acuity is better.

"I'm way less sensitive and emotional. The depression is basically gone, which is great because it was one of my worst symptoms. So I'm ready to start working and doing the normal stuff I've been wanting to do," she said.

Virgil has had MS for several more years. Her report was mixed.

"The main thing I feel so far is improved fatigue. My energy level is greatly improved since the procedure. And that's a big thing. Also, I would get a loud wooshing sound in my head, which would be so loud I couldn't drown it out or focus on anything else. That's completely gone," she said. "I still have pain and cramping, muscle spasms, and headaches. I still have all of those symptoms."

Virgil says she hopes to see more improvement with time, but encourages MS patients to have realistic expectations.

"If this is the only benefit I have...improved fatigue? It was worth it. If I had to do this monthly, I would do it in a heartbeat over the options I've done in the past, because the side effects of the treatments made me so much sicker," she said.

Interventional radiologists who perform the angioplasties have come out in favor of clinical research of CCSVI, saying, "Venous interventions may potentially play an important role in treating some patients who suffer from multiple sclerosis".

"If we were to get referrals from neurologists today, we could do procedures tomorrow," said interventional radiologist Dr. Torre Andrews of Seattle Radiology. "The problem is most the patients who've contacted us have neurologists who either can't or won't refer them for treatment."

Andrews has done a few angioplasties on MS patients, and has received hundreds of calls in his office from MS patients wanting him to do the procedure.

"We would like to make it available to anyone who needs it. It's been difficult, because we are specifically trying to avoid running an angioplasty mill where we treat anybody who walks through the door, regardless of their background and their previous therapies and the involvement of their neurologist," he said. We feel it's important to have the neurology community be involved to help us select patients appropriately, to document function and to continue to manage patients."

Andrews believes it's possible to provide the treatment and collect data at the same time without waiting for double blind studies that will take years to do and millions of dollars to fund.

"To ask those people to wait while we do studies is very difficult. This is not like doing stem cell transplants to cure a hang nail. It's pretty much the opposite. It's more like saying if we treat your hang nail, maybe your cancer will go away. To say that patients will have to wait five, 10 years for the studies we all want to do is very difficult," he said. (Watch entire interview with Dr. Andrews)

Hubbard agrees. He's one of the only neurologists in the country recommending the CCSVI treatment for MS patients. In the 70 cases he's evaluated and sent for treatment, he says all but two have reported no change or have had improvement. Most of the symptoms that have gotten better are vascular, such as headache, fatigue, brain fog and coldness of the hands and feet.

"I find that to be compelling..so compelling that it's really a mystery to me that my neurology colleagues are not only showing no interest, they're actually hostile about it," he said. "If we weren't doing what we're doing not only here in San Diego, but across the country, we have a multi-center trial now, these people would be lost to follow up. Right now, they're going to Europe, Bulgaria, Egypt, and Kuwait. That data's not being collected by anyone. At least we're collecting the data, having everyone come back in six and 12 months. I think if we just waited for a double-blind controlled study, it would never happen." (Watch entire interview with Dr. Hubbard)

Virgil and Rhéaume are among the handful of Seattle patients being followed in Hubbard's study. They say they are excited to be a part of the research that may find some answers about treating the horrible disease of multiple sclerosis.

"In the past, we didn't have YouTube and Facebook and Google. But now we're finding this out on our own and demanding it be researched," said Virgil. "It's really a patient driven movement that we're saying this needs to be looked into because what's been done all these years is NOT working."

"A major number of people with MS are developing a relationship out there. They're tired of not having a cure. And they're tired of drugs that don't work and cost $3,200 to $7,000 a month and don't cure a disease. They're fed up!" Rhéaume said.

Hubbard says his practice charges $3,500 for the MRI to determine if CCSVI exists. The interventional radiology treatment costs about $7,500. Because the treatment is not experimental and FDA-approved, he says most insurance policies have been covering it as a treatment for venous obstruction, not MS.

Both women say it's a small price to pay for the hope provided by what they call being "liberated."

"There are so many people who have MS or who have a relative or friend with MS, who don't know about this. This information can be life-changing," said Virgil.

"It's a movement. We're activists, basically," added Rhéaume. "We all have to take our health care into our own hands. It's wonderful to have an option, to have hope with a disease you've been told there's no cure, there's no hope."