Multiple sclerosis (MS) has been incurable and intractable for so long that there was a collective gasp from the medical community in 2009 when an Italian vascular surgeon, Paolo Zamboni, MD, published a study in the Journal of Vascular Surgerydescribing a new surgery that, he said, relieved two major MS symptoms — fatigue and brain fog — and also might help ameliorate other symptoms as well, including improving energy level.

If you have or know someone who has MS, you might have picked up on this apparent breakthrough back then — but curiously there has been little said about it in the mainstream health media since the announcement. Even many people who follow health news closely wouldn’t be able to say whether Dr. Zamboni’s procedure has really turned out to be a godsend for MS patients. This disease of the central nervous system is so widespread and so insidious, it’s definitely time we found out — so let’s see where things stand right now.

A Controversial Matter

Some doctors believe that stenosis (narrowing) of the principle veins that carry blood from the brain, a condition that is also known as chronic cerebrospinal venous insufficiency (CCSVI), slows drainage of the blood from the brain and spinal cord, and even causes the blood to reflux back into both. And some think that, left uncorrected, the reflux may lead to oxygen deprivation and iron deposits in the brain tissue and theorize it may contribute to — or even cause — MS. The controversial new surgery Dr. Zamboni brought to light is called transluminal angioplastyand helps to correct the stenosis by opening those principle veins and widening them with stents.

However, many doctors are not convinced that reflux blood is a problem — if it exists at all. Nor for that matter are they sure how many MS patients actually have CCSVI or even how specific the condition is to the disease. Furthermore, doctors worry that the surgery for CCSVI carries considerable risk. Not surprisingly, this has caused a huge controversy in the MS world.

Dr. Zamboni’s study investigated 109 MS patients and 177 people without MS and found that all participants with MS had CCSVI while not one of the others did. Other studies have not replicated these findings, however. For example, in a large follow-up study at the University of Buffalo, just over half of MS patients were found to have CCSVI and, even more surprising, nearly 25% of the healthy “controls” also had CCSVI but with no symptoms.

Dr. Zamboni also reported that the surgery, which he performed on 65 MS patients, was quite successful, in particular for patients with relapsing-remitting (RR) MS, the most common form of the disease in which occasional relapses or flare-ups are interspersed with longer periods of disease remission. At a reassessment 18 months after surgery, RR MS patients had “significant improvement” in physical and mental quality-of-life measures compared with their condition before surgery.

However, there is little information to date about results of similar surgeries performed for CCSVI, and several alarming problems have emerged. One concerns use of angioplasty stents for the surgery. Neurologist Robert Fox, MD, medical director of the Mellen Center for Multiple Sclerosis at Cleveland Clinic, explained to me that angioplasty stents are designed for placement in arteries, which get progressively smaller the further they are from the heart, whereas veins grow larger as they get closer to the heart. This increases the likelihood that a stent placed in a vein will travel, a circumstance that can be quite dangerous — and indeed, one MS patient in the US ended up having emergency surgery to remove a stent from her heart.

In spite of these problems and the questions surrounding CCSVI, in general, a number of doctors in the US and abroad continue to perform the surgery on MS patients. Clearly, though, we need much more information to guide people in the MS community. Fortunately, a major step in gathering information about issues surrounding CCSVI, including what would be optimal ways to diagnose it, is now underway in the form of two-year studies at seven MS centers funded by the National MS Society in the US and the Multiple Sclerosis Society of Canada.

Dr. Fox’s Advice

Acknowledging the difficulty of doing so, Dr. Fox urges people with MS to hang on while researchers work to close the information gap between what patients want to be true and what we know is true. We discussed some of the specific questions people have regarding this controversial therapy…

  • What causes the vein blockages in MS patients? We don’t know — the ongoing studies are taking a step back to establish the true role blockages do or do not play in MS, along with what may or may not be different about them in MS patients and people without the disease. We want to find out if CCSVI is a possible cause of MS or is a result of it. MS, as well as other neurological conditions, cause the brain to atrophy, becoming what we call a “sick brain,” and that alone may create vascular changes. If a sick brain is behind CCSVI, the condition, when it exists, may not be a factor in causing MS, but rather a result.
  • Still, if MS patients’ doctors find blockages, why not just have them fixed? Not only are we not certain whether CCSVI has anything to do with MS, we also believe that the body is typically able to manage damaged veins by putting other veins to work. This means there may be no reason to open a vein and no benefit to be gained from it.
  • Shouldn’t MS patients at least be tested for CCSVI? We are not recommending this yet — we do not yet know what imaging techniques are most effective for making a careful diagnosis. And if a test does show CCSVI, we don’t yet have the information we need to know what to do about it.
  • The Internet is filled with offers for “medical-tourism” vacations overseas, some of which say this surgery is guaranteed as successful with no risk. While such claims are clearly exaggerated, could any of this be helpful? CCSVI surgery has generated a great deal of buzz in social media and on medical-tourism Web sites, and there is a lot of misleading information out there. One thing we do know to be absolutely true is that CCSVI surgery is a risky procedure.
  • When are we going to have the information we need to know whether CCSVI surgery is a real possibility to help MS patients have better lives? Information is coming in rapidly. By the end of this year, I believe, we will have many interesting results to share.

Bottom line:Until there is a follow-up to Dr. Zamboni’s study via large clinical studies, says Dr. Fox, there is no way to know for sure whether CCSVI surgery really is hope… or just hype. It’s understandably difficult for MS patients to be patient… but for now, that’s the strategy that seems to make sense.