My wife Caroline’s lived with multiple sclerosis (MS) for eighteen years now. Canada has one of the worst MS rates in the world — 240 cases per 100,000 people when 30 cases is already high. A few drug treatments have been introduced over the years, more to the satisfaction of the pharmaceutical companies than of patients. They work a bit, some of the time, for some people, aren’t very pleasant, and are a far cry from being a cure. In fact, much of the medical literature around MS still centers on diagnosing it; even that can take months.
So when Paolo Zamboni, a vascular surgeon working in Ferrara Italy, announced a drug-free MS treatment and wonderful anecdotal cures, the MS world sat up. He reported that he’d found veins in the the necks of many MS patients to be constricted, as a result of which blood was unable to sufficiently drain from the brain. After widening these veins with temporary angioplasty, and sometimes stents (which are left behind), patients announced dramatic relief. Zamboni called the condition Chronic Cerebrospinal Venous Insufficiency (CCSVI) and suggested that the reflux of blood caused a harmful build-up of iron in the brain, eventually producing lesions and MS symptoms.
This explanation leaves doctors with more questions than answers. For example, is the iron accumulation found by Dr. Zamboni a secondary effect or a cause? The issue of increased iron deposits in inflammatory sites has been under review for the last decade, and still is. Also, a follow-up study in Buffalo found less clear-cut results than those in Italy, including the existence of constricted veins in non-MS sufferers, and the lack of any constriction in a good portion of those with MS.
Many MS patients want the procedure now, feeling they can’t wait another five years while their body advances to a point of no-return. They’re antsy, upset with bureaucracy, foot dragging and doctors afraid of upsetting the pharmaceuticals. They want funding for standardized CCSVI screening and treatment now. Some are flying to Poland, where the procedure is available for $10,000.
So, worldwide, groups like MS Liberation in Canada are organising fundraisers, walks, talks etc. to raise awareness and work together to spur CCSVI testing, treatment and research. There’ll be a walk/protest on Parliament Hill for CCSVI action on Wednesday, May 5, 2010 at 1:00pm – 3:00pm Ottawa. Look here. At least, you can sign this petition to the Canadian Government to Support Zamboni’s Liberation Procedure for MS patients.
Nevertheless, the MS Society (Canada) has freed up funds with alacrity and is inviting proposals for studies ahead of its usual annual deadlines. Successful applicants will be announced in mid-June. Each project grant is worth $200,000. Altogether the society is contributing four to five million dollars for collaborative, multi-institution studies, some of them in conjunction with US researchers.
Doctors are paid to be skeptical, but they must be excited too. After all, if you were a neurologist with about half of your patients suffering from MS, wouldn’t you enjoy being able to give them some good news for once? Still, researchers are firm that clinical trails are best way forward because they:
a) provide appropriate safeguards; including ethical approval & consent
b) provide appropriate protocols for information that flows from the patients’ reponse in a way that provides the answers that will refine both diagnostic and treatment methods.
In 1848, Ryan Fleish related MS to vascular problems. Almost a century later in 1939, when anticoagulants were discovered, they were widely given to MS patients for 20 years — until the first randomized clinical trials established that the treatment was ineffective.
CCSVI also suggests that MS arises from a vascular problem, though in the venous rather than the arterial system. What’s apparent so far is that if the azygos vein is constricted, angioplasty (expanding it from the inside with a balloon) is effective because the vein remains open. If the constriction is in the jugular, however, the vein quickly collapses again. Stents can be inserted, but the procedure is now less straightforward and carries risk: stents sometimes migrate, even into the heart. Research so far also suggests that the procedure is of no benefit to those suffering from primary or secondary progressive MS — only those with the relapse-remitting form of the disease. Caroline’s prognosis is borderline, still relapse-remitting in some ways but progressive in others.
There are also difficulties differentiating the response rate. Evaluating results is difficult since the only way to find out is to ask patients; they’re inclined to find hope in the smallest relief — that’s the placebo effect — so their reports are considered unreliable.
Ever since multiple sclerosis was first named, the disease has caused fear, disability and misery to countless millions of people; in recent years the incidence of the disease has grown rapidly. This possibility of a new treatment is the only slender thread of hope that’s ever been offered, so the overwhelming response is understandable. The down side, of course, is that if it leads nowhere, the fear and misery will be redoubled. Let’s keep our fingers crossed. We talked of going to Poland, but Caroline’s opted to wait for a thorough protocol to emerge, and then see where it leads. One thing’s for sure, if doctors can’t find any constricted veins, there’s nothing to be done anyway. The wait is agonizing.