MS, CCSVI, and QA

These days, it’s pretty rare to come across a person that doesn’t at least know of someone who has Multiple Sclerosis. Canada has the distinction of having one of the highest instances of the condition in the world. Despite rigorous efforts, concrete causes and cures have eluded the medical community but, happily, research ever continues and various treatments of symptoms over the least decade have made life much better for many stricken with this illness. Choosing and pursuing different treatments can be a slippery slope, however, as there are instances of misinformation and poor presentation that offer questionable results. Such can be said for CCSVI (chronic cerebrospinal venous insufficiency).

My wife was diagnosed with multiple sclerosis in 1997. At the time, she had what is referred to as “relapsing-remitting MS”, going through periods of illness followed by what was then often extended periods of good health (where she was fit enough to return to playing squash, cycling, and playing the downtown Toronto blues and R&B circuit with her band). About 6 years ago, things took a turn for the worse, her diagnosis changing to what is referred to as “secondary progressive MS” – a stage where full recovery from a relapse period is not possible. Things changed. Thankfully, I was already working from a home office at this point so it was convenient for me to take on the role of “caregiver” to tend to her disability. I’ve had many friends say things like, “I don’t know how you do it, Claudio” and, “I couldn’t handle the pressure or the stress of it if I were in your shoes”. I say to those – don’t sell yourself short. It’s remarkable what the human spirit can accomplish under adverse conditions, especially when it comes to taking care of someone you hold most precious in your life.

So……

In 2009, we received a telephone call from a family member that urged us to watch a CTV W5 report that was going to air that evening. Apparently, there was some news about treating MS – perhaps even curing it. We’ve kept an open mind here regarding all treatments, and tuned in to see the report. The profile featured a doctor from Italy who professed to finding a cure for MS, based on the principle of there being a relationship with blockage in veins – specifically, a blockage resulting in a buildup of iron affecting the central nervous system. We saw clips of the procedure, and people afflicted with MS looking like they were cured – most notably the doctor’s wife. Like the rest of affected Canada, my wife and I held hands and cried our tears of joy, feeling that better health was within our reach. But then, about an hour or two after the broadcast, we had questions. Serious questions. Being in the QA field gave me a chance to rethink what I had just seen….and I was far from convinced.

– Why was the test group so small? Only 50 patients? That was enough for the doctor to make this claim? Also, that was enough for the CTV for broadcast a piece that they must have known would generate questionable hope for a large population?

– He performed the surgery on his own wife? This was presented as a “labour of love” by the CTV…but doesn’t address the question around medical ethics in doing so.

– We were told that “special equipment” was needed in order to detect whether or not a patient did indeed have this vein blockage. Really? There wasn’t already medical exploratory equipment that could determine this?  I found this hard to believe, and on further research found that the doctor who made this discovery had a financial stake in the company that manufactured this “new” equipment. Hmmmm.

– We were told that the doctor’s wife was a shy person that preferred not to speak on camera. I might’ve found this most disturbing of all – your husband may have made the biggest medical breakthrough in the past decade and you won’t talk about it? She continued to remain quiet in the coming months as people began to question the validity of her husband’s research? Very odd.

We decided to adopt a “wait and see” approach here. The news gave hope to the MS community, and Canada was especially aggressive in the desire to pursue treatment (who could blame them?). We started seeing reports come in on social media, web sites, etc. from people who flew to places like Costa Rica and Sri Lanka to have the procedure done while Canada was contemplating its next move – and read claims of improved health. However, as the months after the broadcast turned to 1, 2, 3 years we started hearing a very different story. No one could duplicate the doctor’s results – whose agenda now changed form “cure” to “I’m just trying to encourage more research”. There was no conclusive evidence that people with MS suffer from CCSVI at a greater rate than people without MS. People who felt better after treatment started coming forward to claim that they started getting worse again. In some cases, even worse than they were pre-surgery. Our own neurologist imparted some wisdom to us that seemed to slip through the cracks – CCSVI was investigated in its relationship to MS back in the late 50’s/early 60’s and was found lacking in establishing a relationship back then. We also read some rather alarming reports of health risks in the procedure – sadly even resulting in a few deaths.

In the case of my wife and I, we decided that all we needed to do before even considering pursuit of the operation was to determine if there was indeed this vein blockage. We had no reason to not trust current exploratory methods, and scans and xrays showed that she indeed did NOT have any sort of blockage whatsoever. End of story there. From there, what affected us most was seeing the reactions of the MS community. As is easy to understand, desperation took hold for a couple of years there – Canadian and American resistance to pursuing the procedure was seen as some grand conspiracy to keep people ill and favour pharmaceutical companies.

The influence that Quality Assurance had here was not only in the disputable procedure itself, but in the mindset required to ask questions – the “right” questions. It was a lesson in people “believing what they want to believe” and embracing it.

What is now called “the liberation treatment” isn’t all bad, though. It’s important to note this. What the real discovery here was that opening the blockage in question DOES make a person feel better – but this is a general medical conclusion, and not an MS-specific matter. Whether you suffer from progressive MS or are an Olympic athlete, you’re going to feel better with blood flow normalizing. That’s just common sense, yes? Happily, there’s a population that may have a diagnosis of MS that is coupled with this and will indeed experience at least some relief.

Better than nothing at all, no?