Hi everyone, I’ve lurked here on an off for the past 18 months but this is my first post.
I was diagnosed with a right temporal AVM when I was 28, in March of 2018. The AVM was found by accident after I was sent for an MRI by my GP to rule out any malicious causes of migraines I started getting.
I will cut a very long story short (although if you would like to hear it, I am more than happy to share) to say that in March 2019 I had a craniotomy to remove my AVM, and Saturday last week was the six month anniversary of my operation.
I think I am incredibly lucky - I had no symptoms prior to my AVMs discovery, my surgery went relatively smoothly (there was a complication, but it caused more trouble for my surgeon than for me!) and my recovery has been good.
During the year between my diagnosis and surgery I often visited this site, but I found it hard to read too much - and I won’t lie, a part of me feels a little bad posting this when compared to some others I have had a very easy ride.
But I also hope that maybe I can help someone, even just a little bit. Living with my diagnosis was a year of incredible stress and fear, I think it has fundamentally affected who I am as a person and has affected some of my relationships. I don’t think its easy to talk about something like this with someone who hasn’t been through it - I don’t think people understand, as much as they try to.
Although the AVM itself didn’t affect me much, psychologically I had a pretty rough year, and even now I think it still affects me. I would love to talk to anyone who feels or has been through the same - and I would also like to talk to anyone who has had a similar surgery to mine to find out what your experiences have been like.
Although the surgery was fairly plain sailing, recovery was tough for me and I still struggle to understand if the way I feel today is normal for someone in my position. I find myself very easily exhausted, I don’t have the strength or stamina that I used to have.
They say you should be the change you want to see in the world, and when I was struggling to decide what path to take after my diagnosis I desperately wanted to talk to someone in a similar position to me. I kept finding stories that were just too frightening, and I couldn’t find the information that I really wanted. Although I knew that there were no certainties in regards to the outcome of surgery, I spent hours and hours just trying to find out what it would be like. I wanted to know what would happen before, during and after.
So I hope that maybe one day I can be of help to someone who is taking the same path as me. I don’t know what it’s like to experience a bleed, or seizures, or any of the things which so many AVM sufferers struggle with - but I know what it’s like to live in fear, to feel alone and lost and so so unsure of what you should do.
Sorry for the long post, I hope everyone here is as well as can be and I look forward to hopefully speaking to some of you