CCSVI

Chronic cerebro-spinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. It has been hypothesized to play a role in the cause of multiple sclerosis (MS). This hypothesis was first put forth by Paolo Zamboni in 2008. An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure.

In a nutshell. People that have MS are more likely to have veins that are collapsed or restricted and once they get the venogram, their symptoms go away almost immediately. The interventional radiologist goes in through the femoral vein and looks for those sad veins that need to be happy again. Once they find one, they put a little balloon in the vein and blows it back up. Creepy huh?

This is a new procedure that folks with MS are volunteering to undergo. I have only heard good things about it and I talked to Dr. Vincent about it and she was all for letting me take a shot at it. She ordered the venogram for me and we got it scheduled for today. A week or so ago I got an ultra sound on my jugular veins because they suspected that this is where I might have some restricted veins. The results came back that I did have a little abnormality in some veins so I was a good candidate for the CCSVI procedure.

My procedure was scheduled for 12:30 p.m. At 10:30 a.m., someone called me from the hospital and said that since I hadn't seen Dr. Hatch yet; there was no way that this procedure could take place. The lady I spoke to said she didn't know how I had gotten onto the schedule for today but I was going to have to reschedule.

I was so ready to be done feeling this way. So ready to be done feeling nauseous after looking at the computer. So done not being able to watch TV. So done not being able to drive and SOOO done not being able to walk without looking like a drunkard. I was crushed. I cried all of my make-up off and put my sweats back on.

I called my mom and told her what happened. She was all over the situation(she works in the radiology department so she has the inside scoop). She got on the phone with Dr. Hatch and basically ripped him a new one. If I was brave enough, I would have done this myself. He said that the hospital caught up with him and said that he hadn't turned in the correct paper work for me. blah blah blah. He apologized a billion times and said there was nothing he could do.

So for now, the earliest I can get in for the pre-venogram is on January 7th to make sure I am even a candidate(happy birthday Chels!). After that, who knows how soon I can get in for the real venogram?

I'm pissed, sad, and tired.

It's so important not to stress too much because stress makes my symptoms worse but that is almost impossible today.

Faith, not fear.