Vein-opening for multiple sclerosis investigations continues
More evidence in for so-called liberation treatment but answers still unclear
Whether opening up narrow neck veins in people with multiple sclerosis improves symptoms continues to be an unanswered question despite incoming data from studies.
Thousands of people with MS worldwide have paid to have veins in their necks checked for abnormal narrowing and treated with balloon angioplasty.
The treatment is based on a hypothesis by Italian doctor Paolo Zamboni who claimed that MS might be linked to narrowed veins and that removing the blockages could relieve symptoms.
Brian Light calls himself a desperate MS patient who lined up to pay a private U.S. clinic thousands for the procedure, in an attempt to stop his symptoms from worsening.
"He charged me way too much and it didn't work," Light said. "When you are faced with nothing, you try something."
At the American Academy of Neurology's annual meeting in San Diego, Calif., this week, doctors heard about a small study from Buffalo. Nine patients were randomly assigned to receive balloon angioplasty treatment and 10 others to a fake of the procedure. There was no appreciable difference between the two groups.
"What we were hoping would be that the preponderance of the people who got better would be the treated group and the preponderance of people who did worse would be in the sham group. That is not what we found," said principal investigator Dr. Adnan Siddiqui, an assistant professor of neurosurgery at the University of Buffalo.
The Buffalo study was one of the first rigorous scientific tests of the treatment. Previously, an Italian group conducted a blinded study of 1,856 people with multiple sclerosis, other neurological diseases and controls where a panel of ultrasound examiners did not know whose records they were reviewing.
The vast majority of those with MS did not have abnormal vein conditions and the proportion was the same in normal controls and subjects with other diseases, said Dr. Giancarlo Comi, a professor of neurology at the University of Vita Salute San Faffaele in Milan.
The prevalence in Comi's study was:
- MS patients: 3.26 per cent.
- Healthy controls: 2.13 per cent.
- Other neurological disorders: 3.10 per cent.
"The result of the study essentially says there is no link between CCSVI [Chronic cerebrospinal venous insufficiency] and multiple sclerosis," Comi said in an interview at the neurology conference.
Dr. Barry Rubin is part of a national MS scientific advisory committee that is reviewing such research.
The medical director of the Peter Munk Cardiac Centre in Toronto wrote a paper about the complications some patients have experienced at foreign clinics. "We've urged caution having this kind of treatment in uncontrolled environments especially where the quality of the procedure may not be similar to what a patient might expect if they're being treated in Canada," Rubin said.
Doctors and scientists are still looking for an answer to the question of whether there is a relationship between narrowed veins in the neck and MS, he said.
"It's not good news if you're an MS patient and you really thought and hoped and prayed that this would be the answer," Rubin said.
"But it is good news if we get the right answer and end up preventing harm from people that would be treated with this therapy if it doesn't work."
Despite the evidence so far, Light has had the treatment three times and says he would do it again.
"You give me false hope, I will take it because I have no hope," he said.
Results are in from two of the seven studies sponsored by the Multiple Sclerosis Society of Canada and the Canadian Institutes of Health Research. Those have also shown no difference between people with MS and healthy controls.
With files from CBC's Kelly Crowe and Melanie Glanz