I have been diagnosed with having an Arteriovenous Malformation (AVM) in my brain.
What started it all was this obnoxious wooshing sound I have had in my right ear for about four years. Finally on decent insurance, I decided to get it checked out. The noise was getting louder and I couldn’t handle it anymore. Turns out it is not related to my AVM and is something I will have to deal with for the rest of my life, unless I decide to repair the bone that is too thin near my ear. The miracle of everything, though, is that because of this sound, the doctors found something a tad more serious going on in my head. The wooshing sound is a whole other story….
So, in the past month I have undergone a slew of tests, including a hearing exam, MRI, MRA and an Angiogram to finally determine what is “wrong” with me. The AVM is deep within my brain in the Corpus Callosum; specifically called a Splenium AVM, which is towards the back of my brain above the Cerebellum.
To easily explain what an AVM is, one can basically say that it is an abnormal connection between arteries and veins. Your arteries are supposed to branch off into capillaries, and from there the blood flows to veins. What my artery is doing (in a small part of my brain) is branching directly to a vein, causing excess pressure on that vein, which it is not built to withstand. Over time this could deteriorate my vein and cause a bleed. Bleeds cause stroke, seizure, brain damage, and so on and so forth depending on how bad it is.
SO, I visited with my neurosurgeon, Dr. Tumalla at the University of MN on Tuesday. I got to see the images from my MRI and Angiogram and I have to say it was the weirdest experience ever. I saw the inner workings of my brain. I saw where I learned how to count, and my eyeballs. I saw EVERYTHING. He was very good at giving me visual perspective, such as “This image is like we are cutting your head from front to back”. Oh, neat, I think to myself. I saw how my blood flowed through my brain and saw the cluster of abnormal veins and arteries right smack dab in the center. Dr. Tumalla showed me how they discovered it and I could see that blood was flowing into a vein long before it should of been, signaling that there was a direct connection somewhere.
I now have the incredibly difficult task of deciding whether or not to get radiation or surgery. They both come with their risks and benefits. Radiation is a one time shot, and an out-patient procedure. I will have a box screwed to my head, have another MRI and Angiogram, and then undergo the treatment where they blast the center of this AVM with beams of radiation. I will probably feel a little gross for a few days and then have to wait up to three years to see if it has killed the connection my veins and arteries have made. Complications are stroke and seizures (life-long) and has, at most, an 80% success rate and could grow back.
Surgery is obviously an in-patient procedure with up to a 6 month recovery time. The dangerous part of this is that they have to move aside a lot of important parts of the brain to get to the AVM and if any complications arise during surgery, such as a bleed, the area will be hard to get to. If anything is damaged, I could permanently loose my peripheral vision. The success rate of removing the AVM is 100% and it will not grow back.
I know this may sound, and for lack of better words, like a no-brainer, but it has caused a lot of anxiety in my daily life. This is a HUGE decision. I will be talking to other doctors, and other people that have gone through brain surgery. My neurosurgeon recommended radiation, so I am leaning that way, but I am also concerned about the risks. I will be talking to someone who will be doing the radiation before I make any decisions.
Attached is a general diagram of the brain. Just so we are clear, I do not have the big C and it is not a tumor. It will not “spread” but it is something I was born with, so any super tiny abnormalities might grow with time. That is just something I will have to live with. I don’t smoke, I don’t eat Mc D’s, and I walk my silly dog two times a day, seven days a week. I like to think I am relatively healthy, so I hope that whatever I choose to do, I will come out on top.
More information to come. I just wanted to give everyone a general overview of what is going on. Let me know your thoughts and if you, or someone you know has gone through this. I would love to have the chance to hear others’ stories.