CCSVI- It’s My Turn

(Photo credit: The Fayj)

“There are risks and costs to a program of action. But they are far less than the long-range risks and costs of comfortable inaction.”
John F. Kennedy

I've been posting here for a couple of months about a new theory of the root cause of MS, called CCSVI. I’ve spoken to, called, emailed, blogged, private messaged, posted on message boards, Skyped, tweated, and Facebook chatted with so many people. I did all this to gain a better understanding of the relationship between CCSVI and MS, and I did this to find out what my options were for treatment. I am happy to say that the time for talk is over, and the time for action is here.

I met a wonderful group of MS patients who studied CCSVI even more than I did. They put me in touch with a doctor who is forward-thinking enough to start diagnosing and treating MS patients right now. Most of the folks in this group have already been treated for CCSVI. Now, thanks to them, it’s my turn.

On Sunday, my wife and I will be packing up the wheelchair van and driving to a “far away” hospital to spend a week or so with Dr. X, an Interventional Radiologist and Chief of Radiology at a major hospital. On Monday and Tuesday the 15^th and 16^th, I'll be going through some diagnostic activities (MRV and Ultrasound). On Wednesday the 17^th I expect to have a venogram and angioplasty (if warranted) on the veins that drain my central nervous system. No green beer for me on St. Patty’s day this year. I’m not exactly sure when I’ll be home- probably a couple of days later.

Dr. X asked me to keep his identity confidential, so that he is not inundated with requests that he cannot handle at this time. As soon as I am given the okay to disclose his contact information, I will.

Because many of you are interested in what I'll be going through with this experimental treatment, I plan to blog about the details of my experience on a regular basis -- hopefully at least once per day while I am at the “far away” hospital. 

Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.

For some basic information about CCSVI, and its potential relationship to MS, please read my previous posts on the subject.