Angioplasty has emerged as a safe treatment for chronic cerebro-spinal venous insufficiency (CCSVI)—a possible cause of the autoimmune disease multiple sclerosis (MS)—and earned internet acclaim within the MS community, but the verdict is still out on whether it’s actually effective. While the Society for Interventional Radiology (SIR) has acknowledged the promise of the procedure promise for MS patients, it also has issued a call for more research.
Gary P. Siskin, MD, chairman of the department of radiology at Albany Medical Center in Albany, N.Y., said word-of-mouth has been the driving force behind the progressive use of the procedure.
“It really is the classic model of one person tells two friends, they tell two friends and so on,” Siskin said in an interview. “There are a lot of anecdotal reports of success, that haven’t necessarily been published in the literature, but have been circulating among social networks online. Patients are hearing about this through their friends.”
A review of social media websites and quick Google search pulls up advertisements for CCSVI treatments at hospitals—both inside the U.S. and internationally—that offer to perform the procedure without wait. It has even been dubbed “liberation therapy” by some of its proponents, and in late June, the Canadian Minister of Health announced government funding for clinical trials.
Siskin said the MS community is paying close attention.
“They might not see each other in close proximity, but online, this is a very tight-knit community of patients. They share information regularly,” Siskin said. “When someone undergoes a procedure and they have an outcome that they consider successful, many of those patients will go online and tell patients who are suffering from the same illness about their experience.”
The procedure involves using angioplasty to widen the jugular and azygos veins to improve blood flow. Blockage in veins that drain blood from the brain and spinal cord and return it to the heart might contribute to MS and its symptoms, according to the treatment’s proponents. Siskin, who performs the procedure for patients at Albany Medical Center, said it’s minimally invasive and low-risk.
“There have been principally two reports that have focused exclusively on safety. Both of them have found a very low rate of significant problems,” Siskin said.
Among problems reported in the accounts were changes in heart rhythm, which for all patients returned to normal, and neck pain or headache, which tended to disappear in a matter of hours or days, Siskin noted. One reported complication involved the migration of a stent into the heart. However, that risk is specifically associated with stent use.
Over the last two years, the recent wave of patient-driven performance of the procedure has generated interest from the medical community, according to Siskin, and the literature is starting to develop. But in the long run, larger studies will be needed, Siskin said, and physicians should be aware that the popularity of the procedure was developed through the internet.
“We feel that ultimately, a multicenter trial is going to be needed. We feel that there are very early preliminary data that has largely come out of Europe about this procedure. What the Society for Interventional Radiology would like to see is more studies,” Siskin said. “A large multicenter trial needs to be done. We just need more data.”
The neurology community wants more data as well, Siskin noted.
“The view of the neurology community is that this isn’t real until data demonstrates that there’s something to it,” he said. “Honestly, that’s a fair opinion.”