SUPERIOR VENA CAVA SYNDROME - GETTING THE DOCTORS TO UNDERSTAND

So many of the folks with Superior Vena Cava Syndrome have trouble expressing to their doctors what it is like to feel the way they do. In the 18 years that I have lived with this I've learned about a lot of responses. I think the most common is showing up at the emergency room and telling them that you have superior vena cava syndrome and they ask what it is. I tell them and they look at me like I am in the loony bin. They leave the room (my husband and I snicker because we know what is going to happen) and return a bit later having looked it up on the Internet. Then they treat me like a person who knows something about her body. It is almost always the same.

Because of the difficulty of venous access with this problem I have finally had my doctor write a letter that indicates what order the veins should be tried. This eliminates the need for me to make hard decisions when I am not well. I carry the letter with me along with a list of my medications and medication allergies.

Doctors don't understand the subtle symptoms of SVC. If I bend over for just a short time all of my blood goes to my head. When I stand up the pressure from this blood on my optic nerve causes me to go blind for a little bit. I'm guessing that there isn't a specialist out there who knows about this phenomenon. The doctors just know it is a "plumbing problem" in the venous system.

I'm glad to be alive. It sure beats the alternative. I hope that my writing is beneficial to some soul that is searching for answers to this rare disorder.