Thanks, Rogan. Mark felt I was saying this is a proven correlation....but if you read my post on the anecdotal case of the woman with MS and NPH, you see lots of "what ifs" and "discovery process". I thought that one case was interesting, that's all. And I'm so glad that Dr. Haacke started measuring cranial circulation and oxygenation after we had a discussion with the Hubbards on what might be measurable, tangible benefits of venoplasty. (I knew Jeff's results would be called placebo.) And CSF measurements may well be coming from Dr. Haacke in the future. He's really the friend of pwMS, and his work is laying the foundation as we move forward. He is an incredible scientist.
My rant was more about the fact that Dr. Frohman understood what CCSVI might be doing to MS brains back in '09, since he has been studying the results of NPH, and knew all about how the increased size of the third ventricle was common in MS and NPH---but this phenomena is called "brain atrophy" on MRI, once an MS diagnosis is made. And frankly, it ticks me off that he isn't working with vascular doctors to understand this. I mean, if you were he, wouldn't you be intrigued??
What Cece brings up is key...would that woman's NPH have improved if she had been treated for CCSVI with venoplasty, and not shunted? The recent BNAC study shows that venoplasty alone, without surgical shunting, provided better clearance of CSF and a change in flow velocity in ALL who were treated. Now, here's the kicker.....there MAY BE a correlation here with Alzheimer's, Parkinson's, dementia and other diseases of neurodegeneration---these are all diseases where slowed cerebral bloodflow (hypoperfusion) and slowed CSF clearance harm brain tissue. Shunting CSF works for some, but not all of these patients. And I know of one study going on that is looking at this correlation and learning exciting things.
I am not a scientist, I am not a spokeperson for pwMS. I just care about this research for personal reasons. My Dad had undiagnosed NPH, and died way before his time, because his gait was shuffling, he was becoming confused, he fell, hit his head, bled in the brain and never pulled out of it. My husband lost his peripheral vision as a kid, from drusen and increased pressure on his optic disc, and he developed MS decades later. The way I look at it, I'm doing this for my kid, because his deck is loaded.
Mark's a good guy, an outspoken advocate for CCSVI treatment. He has a tough time in the UK where Lemtrada/Coles/Compston reign. I'm lucky to live in the wild west. But we're all on the same team.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09