AVM Survivors Network

Finally AVM free!


So, it’s been quite some time since I have posted on here. Predominantly because I had forgotten my password and the name of the site lol. A lot has happened for me though. I was diagnosed with an AVM in my left frontal lobe of the brain. This was back in 2008. I was living in Georgia at the time and I thank God every day for that man. They started embolization treatments while I was down there (I had had my first daughter the November before that and found out just how serious of an issue it was!). I had to give up my schooling because my treatments were falling the same week my finals were, but I’m ok with that. I moved back to Missouri shortly after that and didn’t have anymore treatments for awhile as it took some time to find a good neurologist here. I met my now ex-husband when I came back and shortly became pregnant with my second daughter and knowing then what I did, I requested a c-section but was denied due to the fact that my embolizations were holding up well. I was NOT happy! I had her naturally (my biggest baby at 9lbs. 3oz.) And it was rough. I had finally found a neurologist in Columbia MO and we had met a few times. They had done more MRI’s and come to the conclusion that an actual surgery was going to be my best option. Then, surprise, surprise 23 months later here comes my youngest daughter lol. I requested a c-section with her and I was granted one. So my youngest child was a c-section baby. I was given a couple of years to recoup from having my youngest daughter and on April 29, 2014 I went in and had my surgery! I was scared to death (for those wondering, the increase of a bleed do grow as we get older) but so excited too. I don’t remember much about that day honestly. Just what I was told. My oldest nephew was there the entire week I was in the hospital. I couldn’t remember my family or even where I was. It took me a good 3 months to fully recover my life. I was told it was supposed to be an 8 hour surgery that turned into about a 12 hour surgery due to some complications. But, I made it!!! They had to fly in a special neurologist (whom I’ve been told decided to stay in Columbia as he was impressed with the facilities).

My story doesn’t end there though! My dad got sick in 2016 with pancreatic cancer. I came down to take care of him in Feburary of 2016 and he passed away in July of 2016. In February of 2017 I was staying with a friend of mine and had just gotten up to go to work. I had stretched and my neck locked up. I just kind of shrugged it off and went to the bathroom as usual. I got done and walked out and got really tired all of a sudden. I told my friend that I wasn’t feeling well and she might have to take me to the hospital. She agreed she would after she dropped her daughter off at school. I guess at some point I laid down and fell asleep. She somehow managed to get me to her car, to the hospital and was life flighted to the plaza as the hospital she took me to didn’t have the means to take care of me. I don’t remember any of that. I woke up in the neurosurgery ICU to be told that I had had an aneurysm. They had to remove 2 IV bags full of blood from my brain. I’m grateful to be here, that’s for sure. I was then approached by a neurosurgeon who informed me that when they did the initial surgery to remove my AVM they had missed a minute part of it in the very back and that when the blood was gone from my brain I would have to go in for a second surgery to remove the rest. This was less than 3 years after my first surgery. SOOOOO I am happy to announce that I am AVM free these days.

Now, I don’t tell you this because I’m rubbing it in or bragging. I’m telling you this because THERE IS HOPE!!! It doesn’t matter how serious the situation is, or where the AVM is located there is HOPE!! It’s going to be a long road for awhile, with. Lot of tears and frustration but you can’t give up. You can’t let go. Everyone has something to live for. EVERYONE!! So to those who have found recovery (physically anyway, as this is not just a condition that effects the body but it takes a toll mentally and emotionally as well) CONGRATULATIONS!! To those still going through it, hang tough my friend. YOU WILL BE OK!! I will pray for you, I will keep my ear open if you need to talk. I am here!!



Holy smokes and Welcome back! That is one incredible story of perseverance and courage, throw in a positive attitude and voila! Thanks so much for sharing that, it is amazing what a human endure. For me it shows the intricacies of the brain and the fact that location within the brain matters so very much. I was lucky with mine being in an area that left me some options as far as treatment as well. Thanks and Take Care, John.

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Thank you! I just wanted to share. I still have a hard time converting short term memory to long term memory and I don’t think I will ever completely recover, but that’s ok! I’m finding new ways to learn and stretching myself beyond my normal parameters. I am happy to be AVM free and I KNOW other people on here need hope as well! I am more than happy to listen and offer encouragement!

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Congratulations on being AVM-free! I can’t imagine words any sweeter than “AVM-free”. I hope to utter those words one day, as we all do. You have fought the battle and you have won. You are truly Blessed.

Sharon D…



You will be! It will happen by the grace of God! I wish you all the best of luck!