Hi everyone.
For those of you who don’t know me, my AVM ruptured on what I thought would be a normal bike ride to work. With two miles left until I arrived, I felt a horrible “ice cream cold ” brain freeze sensation behind my right eye. It was severely painful, but in an effort to get to work on time, I pushed myself harder and harder.
When I arrived and showered, I became extremely confused. I barely managed to get dressed as I was so confused but after a few try’s, I eventually got myself dressed and made it upstairs to my team. Despite sitting through a briefing and being told several times by my boss to go home, I carried on as if nothing were happening.
Later, I was found wandering around the car park. Some of my teammates bundled me into a car and took me home.
I went to bed thinking it was a migraine, but the next 20 minutes were the most painful of my life. I felt like my head was going to explode. The pain came in waves, getting worse with every surge. I tried to call my wife on her mobile, but I was so confused and in such agony that I couldn’t figure out how to use the phone. All I could do was scream.
Thankfully, my teammates had called her when they dropped me off. At the point where I thought I was going to die, she came into the house and called out, “Are you okay?”
“NO!”
“Shall I make you a doctor’s appointment?”
“NO!”
“Shall I call an ambulance?”
“YES!”
It was at that point I realized I wouldn’t have been able to string a full sentence together to ask for help, but she made the right call. Unbeknownst to me, my brain was bleeding; I was essentially having a stroke.
After an ambulance trip to A&E and a CT scan, I was rushed to Addenbrooke’s Hospital. An angiogram located the cause: an AVM on my right frontal lobe, just behind my eye. After a day in critical condition, I was given three options:
Do nothing and hope it doesn’t bleed again (which could be fatal).
Radiotherapy, which would take a year and wasn’t guaranteed to be 100% successful.
A craniotomy to have it removed and sealed (with an obvious risk of death).
I chose the third option. On New Year’s Day 2013, I said goodbye to my friends and family, worrying it might be for the last time. While waiting to go into theatre, I was so nervous that I made myself a promise: if I came out of this alive, I would never let myself be nervous in an interview again. In the grand scheme of things, life itself is more important than a job.
The surgery was successful, but I soon realized I was not the same person I was before the bleed. It wasn’t a fault of the surgery; I just noticed I couldn’t keep up with conversations, couldn’t remember things, and couldn’t multitask. I was becoming irrational and snappy. Eventually, I began having seizures and had to retire from the job I loved—a career I had spent 18 years building.
Retiring was very hard to accept, but eventually, I learned to be grateful for who I am now and what I can do. I’ve made progress through hard work—finding workarounds, taking notes, and consciously putting in much more effort than I used to.
I love motorbikes, and I like the analogy that I am a 250cc engine in a 500cc bike. I can just about keep up with the bigger bikes, but you can’t see that my engine is working at double the speed of theirs. It is frustrating when people don’t make allowances for this. They say, “You look like you’re doing well!” It would be different if I had a broken bone; that’s easy to see. This really is an invisible injury.
Thank you for reading and I’m sorry you have had to go through the shitty experiences you have or are going through.
Welcome, thanks so much for being here and sharing your story. You and I share a fair bit in common, but I’ll have to pass that along a little later as I’m off to the gym and then work. I’m still working, for now, but retirement is coming soon. I very much appreciate “I learned to be grateful for who I am now and what I can do”. That is inspirational in many ways to me, and I am sure many of us in our family here, to get to that point sounds like it took time and effort for sure! Thanks again,
Welcome to AVM survivors! As we always say around here, it is great to meet you, it’s just a shame about the circumstances!
Can I say, you went through the toughest of things. I think especially for blokes, losing any career comes as a big hit: our careers are often a big part of how we define who we are, our status in the world perhaps, so not being able to carry on is a big big thing.
Fortunately, not all of us have been through a bleed, so many of us are well. I could hear my AVM so was able to get it investigated and embolized before it made a mess but I have to tell you that the other challenge with these things is the worry of a rupture! And we have a sizeable contingent of people here who have an AVM other than in their head, which often leads on more to pain than the things we brain AVM people worry about.
I’ve retired myself now – six years ago – and there are some mental challenges to being a retired person, even though I am perfectly well.
Welcome to our community! Sorry to hear about everything you’ve been through, but know that you are not alone.
I was ten years old at school when I had a brain bleed from an AVM in my right prefrontal cortex. I called my mom and told her to hurry because I thought I was going to die. The school secretary ignored this and put me with another ten-year-old in another room. My mom arrived within a minute and found me unconscious on the floor, lying in my vomit, with no adult looking after me. (Both the secretary and principal had remained seated at their desks the entire time.) Luckily my mom saved my life by calling the ambulance while my school did nothing. (Except follow the ambulance to make sure my parents didn’t press charges!)
Long story short, I had Gamma radiation in 2007 and 2012, a regrowth somewhere after that, and another bleed (although less catastrophic) in 2020. As I was not a candidate for other surgeries, I’m currently waiting to see if my third Gamma Knife treatment in 2021 was successful.
Thanks for sharing your story, and please reach out any time.
Hi! Thank you for sharing your story, it really resonated with me as so much of it was similar - bleed, craniotomy at Addenbrookes, having to retire, people saying you look well and not understanding the effort every little thing takes, learning to accept your many limitations - although my avm was in my cerebellum. So many stories are really positive which, although great, doesn’t help me feel any better about my situation. Maybe that’s selfish? I don’t know, but it’s good to know other people are in the same boat. Let’s be grateful for what we can do and that we’re still here to tell the tale. All the best.
I hope you are doing well today & know the feeling all to well about the misconception that we are 100% when our brains don’t function the same way prior to surgery… over time I have learnt to accept this is who i am today & grateful to be alive after surviving a bleed & surgery… God bless!
Friend if it helps, my memory has gone to shit since my Rupture. I don’t know if it was the Stroke or the two craniotomy but I cannot remember things like I used to and I used to be sharp. Luckily, as far as I can tell I am still smart. I have A’s in both my University classes right now but I had to work triple time to remember to turn in all my assignments. I failed three classes by forgetting to turn in assignments, thinking they were done. Now I have two reminders on my calendar so I double and triple check that my work is finished for the week. Most of the time I cannot remember what I had for breakfast
I hear you somewhere that is crazy. Had a AVM Riptur in my Cerebellum too. Definitely days I want to just give up, I like asking myself why are you here? Maybe it’s to share that tale. I was taking apart a pallet and I had the worst headache ever. I stopped sawing because I didn’t want to cut myself and laid down in the dirt. I was so confused. I was trying to talk to a guy to in Dutch and that I don’t speak Dutch and we are in Amsterdam some most people will pride themselves on speaking English. Til this day I have no idea who called the ambulance…thank you to that for who saved my life as my wife and son were playing outback. I had a craniotomy and later an embolization after they discovered the AVM through an angiogram like 3-4 months later. They had let down for a brain bleed and told my wife I was going to die. Scared the shit out of the nurse who turned off the sedation when I woke up. Stubbornness can be helpful to get out of bed and do things, which I read a lot of with the biking! I play table tennis (Ping pong) now and try to enjoy the little things. They don’t tell you “everything is going to change and no one will understand you unless they are a unicorn too” if you have questions please ask you can DM me as well.