Hi, my name is Andrew. I want to share my story in hope it helps others whome have an AVM and are afraid of surgery. I am not the best with stories so please bare with me.
Growing up I had many signs of a brain AVM, like a lot of people it was misdiagnosed, over looked and simply no one realised it until I was older. It had actually been found around 26 or so so about 6 years now. I had gone in due to smelling things…well a lot different sometimes. They had told me a lot of things during my life wear seizures and I was not just me over thinking or just thinking things smelled weird. I always have had trouble explaining what I mean. While yes I had and still do have seizures while they were looking at my brain scan they came across my AVM. It simply was found by luck. My AVM was found in the back left of my brain being over 5cm. When it was first finally removed it was 5.8cm, almost inoperable.
When we found a good neurologist that we felt would be best for me and I felt I could trust we slowly being looking more and more into what we should do.
Eventually we chose to have it removed due to me wanting to be there for my son and hopefully one day grandchildren. I was told that if I did not do the surgery they believed that it would be what killed me. Could of been anywhere from 1 hour to 30+ years but every year the chance would go up. When we found the right neuro surgeon we began the embolization process (they basically went up into my brain and clued the arteries for it closed, which h even that was not able to be completely done due to the size and location of it. ) After having the embolizations the stuff they used made me stink to high heaven as it secretes from the lungs. Breath, body, urine dead got it was bad lol. Smelled like asparagus.
I ended up getting some kind of pneumonia after the first one by body did not like it at all. After we waited a week I was told we had no choice but to continue or I would guaranteed died withing a week maybe two. (The blood flow to it was well a lot of pressure.) Afterwards, a nice little set back happened and by original neurosurgeon had a family emergency and flew to another country to be with family. Speaking of I hope all is well for him now. I was now getting this surgery from someone to in their field but I had no clue about them. I got to meet him once. Obviously if I wanted to live I had no choice but to go with it. The day finally came for them to remove it. The removed literally like 1/4 of my brain. Kinda cool really xD. By the grace of God I am surprisingly still able to talk, see, move around. I had to and still am relearning almost everything. Even reading is hard, my 10 year old has to help me sometimes which makes me feel…well less than a man. In reality they say I should not be able to really be able to do the things I am. I lost the right part of each eye so it is hard to adjust to this vision loss and not being able to drive but Just because this is seem like there is no hope does not mean there is. Having the talk with my mother that if I came back brain dead or dead dumb and blind I did not want to live like that. It was a hard thing to do but needed done
I had full belief that I would come out fine with things that I had to learn to live with, after a religious experience.
I know a lot of this may not make sense and may be badly misspelled for that I am sorry. I am always open to answering questions if you need or would like. I know this is a scary process by I…emplore?..you to not take this journey a lone. Even though I had this resource I did not use it had a support tool. It would of made a huge difference in helping me through this process. There is hope, and scary as it may be I, and many many many others are here for you!
I’m not really sure how to continue but I want you to know I am here for you, it is scary. We know this, you will be scared no doubt but here…you will never be alone.