Hi all, I wanted to give back to this community group as this is something that really helped me get through my AVM and treatment. Hopefully, the below helps at least one person going through the same as I did.
How I found out about my brain AVM:
I was 22 years old when I found it I had an AVM and found out quite a brutal way… I was doing some work on my laptop when I heard a sudden loud sound in my head and then almost a “pop”. I then suddenly lost feeling in my right hand completely, at first I thought this was carpal tunnel or something not as sinister, I went to A&E where I had head scans reviling it was a bleed on the brain.
After 5 days in the hospital, they did multiple CT scans and MRIs and Blood tests and couldn’t find a reason why it happened I was then sent home after a few days due to the bleed regressing and worked on physio with my hand. I had multiple meetings with my neurologist and they couldn’t understand why I had this bleed. especially with all my tests coming back perfect
My neurologist at my hospital was brilliant and referred me to Sheffield for an angiogram. After that angiogram was finished, the doctor who operated said it initially looks look there was nothing there! So I walked out and got on with my life puzzled. I then received a letter around a month after saying something was found the in images from the Angiogram and it was a tiny AVM (they described this as small but aggressive) with a 2% chance per year of it going off.
My bleed left me with really bad fatigue and sickness that was the biggest battle I faced after quite a few months I think I have finally shaken this off, my hand managed to get back to normal maybe 95%. the only other problem it’s left me with is my vision it’s gone quite grainy since the doctors describe this as “visual snow”.
Having my Treatment
I went to Sheffield after a couple of months waiting for my Gamma Knife treatment. To start with you have had the metal frame put on your head. This is probably the worst part of the day and most painful just think you’re in the best hands and once you get past that it’s almost plain sailing! At first, my head and jaw felt so tight and horrible but this went away for me after a few minutes.
After this, I then had a 30-minute MRI, not the most enjoyable if you suffer from claustrophobia, my advice would be to ask for some music to be played or a podcast it’s their job to make sure you’re comfortable. Also, just to note you have someone who is with you at each stage comforting you this really helped me.
The final part was having the angiogram this was much quicker than the first time as in my case they were only exploring the area where the AVM was. Another quite uncomfortable experience but a quick one.
I then went to a waiting room where I relaxed for a few hours so they could keep checking on me, at this point I felt awful, I had a horrible headache and flashing lights in my eyes, this soon passed and was probably likely due to the long hours with my head frame
After my treatment
I suffered fatigue and quite bad headaches in the first few weeks but after that, I haven’t had many problems there’s some anxiety there that there’s still a ticking timebomb in my head but other than that I feel really lucky.
Lessons I learnt / Advice for anyone going through something similar
I understand all cases are different some more severe than others but I just wanted to share some advice that helped me through the bad times
- It Does Get Better: for weeks I beat myself up about losing movement in my hand, at the time it feels like you’ll never be able to do what I used to do, but if I keep at it listen to the doctors and physios there is light at the end of the tunnel!
- Keep Your Mind Busy: I sat alone and spent so much time worrying about the “what if’s”. Being around the people I love and enjoy spending time with as much as I can, and doing things that I love from watching a movie to playing a game really helped. Just keep your mind away from anxious thoughts as much as you can as they don’t help you.
- Your Life is Not Over: This is something I struggled with thinking my career would be over and I can’t get back to my old life. You can, I did in time and stuff I couldn’t do I explored and found new interests. The best thing I got told was to think of what happened as a tiny blip it would be a small paragraph in the book of your life
- Dont worry about things that haven’t happened yet: This is something I found most useful, although there’s a small chance I could have another bleed until my AVM is gone, they said this could be 1 year, 2 or even 4 but a very small percentage of this happening. My point is to try live in the moment don’t focus on the what ifs as you will certainly look back and regret it.
I do hope I haven’t come across as insensitive as I wanted to share from my perspective, feel free to give me a message if you just want to talk or ask any questions