I am setting here trying to remember when I was first diagnosed with my AVM. I think it was August 1996. I had seen a bazillion doctors before that and they came up with everything from cat scratch fever to me gnashing my teeth together at night. They put me on more kinds of antibiotic and different pills than I have ever seen. I had a kind of swelling under the right side of my jaw line. So finally one of the doctors got the idea to do an MRI. I am 26 years old and I have an AVM coming out of the bottom of my tongue. It is not really visible unless it gets big again.
My doctor is in Denver Colorado and his name is Dr. Wayne Yakes he is at Swedish medical center and he has been a Godsend. I owe my life to him and his staff. I undergo what they call embolization as many as the rest of AVM patients do. So far it keeps coming back. It is a whole lot smaller now but I can still feel the nasty thing growing every once and a while. My first surgery was in Oct of 1996 and it was an experience. Since AVM patients vascular systems are a little different than non AVM folks they clipped the top of my left lung and it started to collapse. I have never felt such pain besides the fact that when I came out of surgery I looked like Jay Lenos chin. It was awful. I didn't know if the swelling would ever go down. After my first surgery everything went pretty smooth up until August of 1997. They didn't realize that the AVM had wrapped itself around the major blood supplier to my tongue and they didn't realize it was inside of my tongue. Oh man what a mess.
I was in intensive care for a while, I don't remember how long. They had to put a live drip of blood-thinner and anticoagulant to my tongue so I wouldn't loose it. My tongue turned black. It was swollen so bad I couldn't hardly talk. It took a long time to get it back to semi-normal. It still isn't all the way normal. I got so skinny because I couldn't eat. During this time period we had to sue one of the insurance companies because they claimed it was preexisting. Now I am currently in the process of suing another one.The first one I won!!!!
Since that one surgery I have had pretty good luck as far as nothing happening to me. The only problem is that they keep telling me its supposed to be gone and its not. It keeps growing, it is very tiny and I think that is part of the problem. I have had 10 procedures total and I will have more in the coming year. I know there are those of you out there that know what its like and understand what an impact something like this can have on your lives. I feel very lucky and blessed because I know there are people out there who have them everywhere. But I also feel very alone sometimes. I don't know anyone else that has one of these things.
If you or someone you know has been recently diagnosed with an AVM, I would if I were you, always get a second opinion. Don't let them cut you open until you know what your dealing with. I don't bear a single scar because they did all mine through embolization. If any of you would like information about my doc in Colorado please feel free to email me or email me anyway just to chat. I got married on August 21, of this year!!! My husband just graduated from college on the 14th of December. Please write so we can share stories and experiences, I would love to hear about other peoples experiences.