Two years ago, Jeff and I looked at this image in Dr. Dake's office. All of us had dropped jaws...look at the left side of Jeff's head (on your right) there are less cerebral veins, less bloodflow, no jugular flow and a trickle through the left side which was taken by curly fry collateral veins. We knew this wasn't normal, and as Dr. Dake said, it wasn't good for Jeff's brain.
Two years later, Jeff finally has equal and constant blood flow through both sides of his brain. It's taken three treatments, some stents, some lifestyle changes and lots of staying local and follow up. It has not been as easy as we might have hoped in the beginning. A lifetime of a venous malformation (a malformed left dural venous sinus and two stenotic jugular veins) created lots of damage. Jeff lost his peripheral vision as a child. Ironically, if he had presented with that vision loss today, he would have had an MRI/MRV and his venous malformation would have been caught and stented. But it wasn't caught...and 30 years later he had depression, fatigue, heat intolerence and over 20 cerebral lesions. It took Dr. Zamboni's research to make us question his venous system.
One might ask, why bother? Why keep writing about this or work to keep this information out there? Good question. I believe that every pwMS has the right to know if a venous malformation is part of their disease. I do not know if it causes MS, or whether MS makes a venous malformation worse. All I know for sure is that Jeff's brain was not receiving adequate blood flow, and now it is. And he is functioning much better, no new lesions, no brain atrophy and no disease progression. Only relief from fatigue, headaches, heat intolerence, muscle spasms, sleep apnea and cognitive fog.
If I had MS, I'd want to know if my brain looked like Jeff's. I'd want a local neurologist or vascular specialist to test me with MRV or doppler. I'd want a relationship with a local doctor who cared about me, would follow me for the rest of my days. That's what this is about. Not the cure for MS in a distant land, not a political debate or endless arguments. Just the facts....what do my veins look like? How is my cerebral blood flow?
If my blood flow looked like this, I'd want to know.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS