Tuesday, 11 May 2010


This whole CCSVI thing has my head spinning some days.

(In case you don't know, CCSVI is Chronic cerebro-spinal venous insufficiency, a syndrome in which blood flow in thoracic and cervical veins, from the central nervous system to the heart, is jeopardized by a narrowing of the veins, making blood flow less efficient. The premise is that the insufficient blood flow promotes brain dysfunction...particularly lesions or plaques, known as multiple sclerosis. I don't necessarily buy it as causation, but I think there's a promising link there)

The pragmatic side of me says, "wait for the findings! Study the research!" but the…well, the me side of me says, "time is brain."

It's a saying largely used with people who have strokes - emphasizing that nervous tissue is rapidly lost as stroke progresses. The sooner someone who suffers a stroke has treatment, the more brain functioning can be salvaged. The same goes for MS. Time steals us.

So, do I sit and wait? Not try to get in on clinical trials? I hate the phrase "guinea pig," (neither from Guinea, nor swine) but the idea of experimental surgery feels like that - lab work….working research. I, like every person with MS, would love to halt the progression of this disease, but do I effectively want to be on Dr. Pennfield's table smelling burnt toast*? So much to think over.

I predict a tidal wave of false promises riding the coattails of this research - clinics run by people with questionable moral standards who are out to make a quick buck. New vitamin supplements targeting things that aren't yet defined. New diets. It's terrifying to me that many of those who have cognitive dysfunction due to MS face these decisions alone. Who am I kidding? It scares me that anyone faces any of it alone. I have a hard time comprehending detailed CCSVI information at the best of times and I have an okay grasp on human physiology. I can't imagine what this swamp will be like for anyone who doesn't.

So far I don't know what to think. I have many opinions, as I do about everything in life, but for now it's wait and see.

* For an explanation of Pennfield and burnt toast (you obviously aren't Canadian), go here.

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