Thursday, November 1, 2012
Arteriovenous Malformations are incredibly rare. They are among the list of conditions that most doctors don't know anything about. I was born with an AVM so I have been "medically fascinating" to most doctors I've come in contact with for the majority of my life.
This is good and bad.
The good is that I am relatively well spoken and I don't mind answering questions because I want more doctors to be aware of AVMs and what they do.
The bad is that there are still doctors who do not know how to treat these conditions but want to "try."
AVMs as I discuss in my book
(The Malformation of Health Care http://www.amazon.com/dp/B009V37CXU)
show up when a fetus is developing. In order for the gestational period to do what it is supposed to do, extra blood vessels show up to help grow the fetus. Usually these extra blood vessels do their job and then reabsorb in the body. However, for one percent of the population, those blood vessels think they still need to work so they become tangled and complex in a body that isn't supposed to house them long term.
I didn't find a doctor who knew how to treat my AVM until I was in my mid-twenties. Prior to then, I had a doctor who tried to "cut" my AVM out. This caused the AVM to grow more rapidly and out of control. I of course didn't know that at the time.
We tend to put faith into our doctors. The point of this blog is to encourage those dealing with an AVM or a child with an AVM to seek out a second opinion with a doctor who really understands and actively treats this condition.
My particular AVM should not have been cut into. Ethanol embolization treatments ended up being the way to go for me.
Here's an article on my doctor. He's one of the top docs a person with an AVM can see. I highly recommend Dr. Wayne Yakes as a second opinion if a person is questioning how to treat an AVM.
I also highly recommend http://www.avmsurvivors.org/ if you want to talk to others dealing with the same condition.