I have read some frightening and sad stories here. Also some success stories. I have had some scares myself with my brain AVM which has caused no end of problems in the last 5 years.
It was discovered in 2014 and operated on with “Gamma Knife” at Sheffield Hallum.
In 2016 it was still there - the size of a golfball. When it “awoke”, which was whenever it felt like it, I had scary awake seizures where all my muscles on the left side of my body cramped. It was agony every time it happened.
In 2017 I lost power in my ankle and thought nothing of it - but it became a mini-stroke which left me paralysed on my left side. I went to hospital again, this time for 3 weeks and, after another 2 attacks I finally got some use of my left side back. The Gamma Knife operation had caused scarring - this was now causing the problems. Meds were added and made me feel bad. I stuck with it though and came through the depression. Neurological meds are weird things.
A few weeks ago I had a check-up after another MRI. My AVM is now gone - no blood is flowing through it anymore. The scar tissue persists however - they don’t really know if that will cause a problem or not. So I stay on the meds - they make me feel tired all the time.
Anyway - overall I am a lot better now. I have not had a seizure now for 18 months (although I NEVER take it for granted that I will not have any more of them).
I don’t like it when people say “oh, you are so brave!” - I wasn’t brave at all - it just had to be done.
This condition has changed my life - but - in a good way. It woke me up to how lucky I am to live in a country with healthcare. Lucky and grateful to all those people who invented the surgery techniques and the great staff who studied for years to help me. It has been life-changing, in a good way. I am less arrogant, less judgemental and much more grateful for each day (literally each day I say “thanks” to fate).
I am so sad for the people going through frightening times with these AVM complications. There are some stories which go well and others which do not end so nicely. I feel for you. What can I write that will help? I don’t really know. I don’t want to sound like someone who has “made it” and is gloating - I just wanted to say how it went for me and how, in a back-to-front and upside down way it has helped make me a bit of a better person. It made me realise that planning too far ahead is not for me. I go to work but it is not as important as it was before. Stopping to talk or just having a look around you instead of always thinking ahead or making my boss happy.
I hope all of you who have this, and your loved-ones who have AVMs will be healed and get better.