My 5.8 cm AVM removal

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. :nauseated_face:

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? 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.


I don’t have anything insightful to add, I really don’t

But, that was a very good read - apparently “we” all have very similar feelings going into this - glad you’re here with us & I was able to read that

Having brain surgery or brain procedures, sure puts a whole different perspective on life - sure did for me.

Never think less of yourself, I know it is extremely difficult - I don’t, it took a while & I am still working on it every day(more like every minute). And, like many others who’s stories I have read I am starting to have a few steps in the backwards direction. . . At least I’m still alive & mostly good for now.

Again - thank you for making the post & being here to share your reality.


Thank You…thanks for sharing your story. I can imagine the decision was incredibly difficult, but for me being a dad, you did it for the right reasons. I’m sure that lessened the worry some. Your 10 year old would be happy to help, and will understand the strength and courage of their dad, if not now soon. Take Care and thanks for being here with and for us. John

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Hi! It’s great to share your story and actually, it sounds like an amazing success. I recognised your name and, checking, I find I admitted you to the forum back in 2017, at which point you’d basically been told that your AVM was inoperable.

A bit later on and you asked about getting a second opinion and I gave you the idea of checking out the remote second opinion programme at Barrow Neurological Institute or at Johns Hopkins. Did you take those up? Where did you eventually find a neuro to take you on?

I want to say that your determination to do your best comes out in many ways… in wanting to be there for your son and in wanting to share your story. It’s absolutely great, so thank you for sharing.

More questions… When did you actually have your surgeries? I’m hoping you have some more getting better time still to go :crossed_fingers:t3:

It’s great to hear from you again!

By the way, I had an embolisation for my AVM and I must have used different glue from you because apparently I smelled of popcorn!

Very best wishes,



An incredible story. Thank you for sharing with us. I am an unfortunate one every neurologist I see tells me there is nothing they can do to help me. Stories like this make me happy to know people are being helped and will be able to enjoy their family. At 71 now, I just figure God will figure it out for me. God Bless you and your support team.


Thank you for sharing your story it is definately going to help members here in some shape or form and every story is unique… I hope things are on the up for you now and wish you the best of luck with everything for you and your family… God bless!

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Wow! What a story you have to tell. I thank you for sharing your journey with us. I will keep you in my heart and in my prayers.

Sharon D…

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