Amazing how a day can go. Especially when you've spent most of it in bed. Who am I? Well, I'm a woman living in Chapel Hill, North Carolina. What am I blogging about? I am blogging about my experience with chronic cerebrospinal venous insufficiency (CCSVI) and mutliple sclerosis (MS). Briefly, CCSVI is a defect in the veins bringing blood away from the brain; MS is a degenerative disease of the central nervous system. Recently, a vascular surgeon in Italy published reports that MS may be linked to CCSVI, and more importantly (maybe) that MS may be cured if CCSVI in the patient is corrected.
The day before Thanksgiving I got a call my psychiatrist. She wanted my email to send me an interesting article on MS, what's the theory I asked her? They think it could be the veins.
The veins? Now that's interesting. I could believe it was my veins.
This is all new and exciting and scary and frustrating. It seems like the prudent thing to do is to sit back and wait until further research comes out supporting or negating Dr. Zamboni's research. But if you have MS, which I do, you feel like your living with a time bomb, which your are. And so it is not surprising that people with MS have already started to flock to the very few practitioners who are doing the procedure to correct the CCSVI. And they have ingeneously posted the results on a great website:ThisisMS.
What have I done? Well a couple of things. I've called Stanford University Hospitals and put my name on the list. I was told that I would be contacted by an appointment scheduler and that it may take a while. They are, I was told, getting 80-100 calls from MS patients each day. My sister Joy graduated from Stanford. Does that count for anything? Probably not, but she tells me she has frequent flyer miles I could use and maybe a place for me to stay. But who knows when the scheduler will call.
I emailed a vascular surgeon at Duke University. He emailed me back and said he was aware of the procedure, that they weren't presently doing the procedure at Duke, but that he was trying to change that. He also said that the research was preliminary but promising.
I called a childhood friend who is a Chief of Surgery at Georgetown. She wanted to see the research so I sent her Zamboni's article. Balloons she said would be harmless, but stents that's a different story. But she also indicated that if the research had merit, physicians would jump on it pretty quickly. That's where my hope is, not with the nuerologist, but with the vascular surgeons. They are going to be the new MS go to Docs---and that is going to flip the MS world on it's head!!
I've written a letter to the Chapel Hill News and one to Representative David Price. Of course, as a person with multiple sclerosis I want to believe in a cure. Things look pretty bleak otherwise. (Especially right now when I'm laid up in bed, but it isn't always this way). But I certainly don't want to do something that may be potentially dangerous to me. So, we'll wait and see. I'll keep you posted.
