(A Halloween post)
Goodbye to all that; a short history of CCSVI---
CCSVI debunked!---The end for CCSVI
If all you read were the headlines, you might think that CCSVI was nothing more than a scourge, a fantasy, a vampiric spector that science has, thankfully, stabbed through the heart and removed forever.
It's over. Move along, people. Nothing to see here.
But there is much more going on.
This week, a paper published in a neurological journal showed
"severe extracranial venous anomalies that signficantly impaired normal outflow from the brain" occur in some people with MS.
This discovery was part of the PREMiSE study held at the University of Buffalo. The full paper, in a provisional pdf, can be viewed here for free:
These scientists do not think CCSVI is over. They're still finding it.
Jeff and I know all about these extracranial venous anomalies that significantly impair the flow of blood from the brain to the heart.
Four and a half years ago, Jeff and I saw that very same problem happening in his body. We were astounded at the MRV images on the computer screen, showing slowed collateral circulation and two malformed jugular veins.
I put up an image from his magnetic resonance venography on an MS Forum.
And in doing so, poked a hornet's nest.
(You can see in this picture, Jeff had no jugular flow on the left side (right on pic), and reduced flow on the right. This is evidenced by the collateral veins that are lit up like Satan's curly fries. This is not normal. What you should see are straight veins and open jugular veins, that look like drinking straws. When Jeff's jugular veins were opened up, the collaterals went away, his cerebral blood flowed through his jugular veins in a timely manner. And Jeff's brain has healed. No MS progression. His gray matter looks normal on MRI.)
It's hard not to wonder what would have happened if I had simply taken the research to Stanford, where Jeff was treated, and then gone home to live out our days. But I was part of an online MS forum, and we'd been sharing information between pwMS and caregivers. In fact, that was how I first read Dr. Zamboni's published papers.
Maybe the research would have progressed more readily without patient involvement. Maybe the scientific community would have been more accepting of Dr. Zamboni's research, without the media and patient spotlight.
But I doubt it.
And anyway, there's no going back.
CCSVI exists. It impairs blood flow from the brain. It may not affect everyone with MS, and it may be present in normal people. It's showing up in other neurological diseases. There is great debate as to how it should be treated. Jeff's doctor used stents, others have replaced veins, ballooned, used cutting balloons--others believe lifestyle and exercise may be enough, or antibiotics might help. There is no agreement on the best course of treatment, and that has created confusion and controversy.
It's also clouded the fact that there are newly discovered and very obvious venous problems related to neurological disease.
How it is best treated will be debated, but this exploration is not even close to being over.