The End of CCSVI

“This is the way the world ends
Not with a bang but a whimper.”
T.S. Eliot

We hoped. We prayed (some of us did, anyway). We researched. We organized. The MS patient population and a few sympathetic practitioners stood up to the medical establishment, goddammit! I wrote forty blog posts about CCSVI (forty-one now). But, given what we know today, there’s something that must be said.

I was wrong.

We were wrong.

For those unfamiliar with this saga, the term CCSVI was coined by Dr. Paolo Zamboni of the University Ferrara, Italy, in 2008. The acronym stands for “chronic cerebrospinal venous insufficiency.” Zamboni theorized that restrictions in the veins that drain the central nervous system — the brain and spinal cord — contributed significantly to MS disease activity. Furthermore, he believed opening such restrictions via balloon angioplasty or the placing of cardiac stents could improve MS outcomes.

This Is Not Spinal Tap

Getting diagnosed with multiple sclerosis usually takes time. For some, it takes years, even decades. For others it might take months waiting for signs of progression before a neurologist will commit to a diagnosis and start treatment. But recent research has found that the earlier treatment is started—as of this writing there are 13 approved disease-modifying treatments in the US for MS—the better. “Real-world data … confirm the effectiveness of the early treatment strategy in delaying the accumulation of irreversible disability in RRMS patients,” said the October 2017 study.
Yes, “irreversible disability” is as bad as it sounds. You don’t want that. You really don’t want that. But getting in the way of prompt treatment is the fuzziness of an MS diagnosis, a methodical and laborious process of elimination.

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