Tuesday, December 30, 2008

The Nature Of Bicuspid Valve Disease

As I wrote to my new friend Jane, who also has a bicuspid aortic valve, I have found out that BAV disease is actually a syndrome, with associated connective tissue disorders, that affects other things in your body, like your arteries, and is even associated with other physical manifestations like nearsightedness, which I also have. In this respect it is in some ways similar to other systemic conditions such as Marfan"s Syndrome. It's not merely a problem confined to the aortic valve. BAV disease appears to be something that is not well understood by doctors, even cardiologists. It's a cutting edge sort of condition. With BAV, you should be screened for the condition of your arteries: your thoracic aorta, your carotids, you should get a brain scan, and a scan of your abdominal aorta. Aneurysms can occur in any of these places.

I'm not anxious to have the surgery on the one hand. On the other hand I want it if it's time, and before there is permanent damage to the heart, and before I blow a gasket and have an aortic dissection or rupture. I want this for myself, and for those I love and who care about me.

2 comments:

Barbara Ann Levy said...

I want that for you too! Love to you, Barbara

alerion said...

Hey Jim,
I just posted on the VR.com forum and followed your link here. I too have a bicuspid aortic valve and I hadn't realized the extent of possible risks until I read your post here. Fascinating and, of course, troubling.
I am as blown away by the support and caring and community the websites provide as I am by the sudden news of my impending OHS. Good luck on the 6th. I go for my Cath on the 7th. Sounds like we'll be trading war stories pretty soon!

David Telles