14 Jul Surviving an Aneurysm
Just like many brain disorders or diseases, aneurysms can irreversibly change a person’s life. Andy Carter experienced this in 2013, when she was diagnosed with three aneurysms and had to undergo surgery as part of her treatment. Her story of surviving an aneurysm explores the impact that this had on her life and family, and the coping mechanisms that helped her through it.
Brain Foundation (BF): Can you tell us a bit about your story and how you found out you had aneurysms?
Andy Carter (A): In November 2013, I noticed a pulling and flickering sensation around my eye. I was working a full-on job at the time, styling the pantry in the Masterchef kitchen. My days were long and they started at 3 or 4am, so I put it down to stress but went to the GP just in case. She sent me to the hospital, and initially they gave me a different diagnosis, but I was back within 24 hours with a horrific migraine, leading to my diagnosis. I was lucky that they caught them early, and I found an incredible neurosurgeon. He was kind but very pragmatic which I loved, and I felt like I was in good hands with him.
Unfortunately, the initial coiling procedure failed, and I had to schedule a craniotomy for six weeks later. It was daunting to know they would be operating on my brain. Luckily, the surgery worked and they were able to clip 2 of the 3 aneurysms, but I was quite jarred by the experience afterwards.
BF: How did you cope with the aftermath of surgery?
A: It took a long time to process all of it. Basically, from the minute you step out of the hospital doors, your recovery is your own. For me personally, I didn’t feel like I knew what my options for support were. When I first came home from the hospital I had the support of my mum and sisters from WA, and then they left, and it felt like I just had to go ‘back to normal’ – but life wasn’t normal. The doctors tell you beforehand what happens during surgery, but I didn’t know I would wake up every day afterwards with a migraine – even to this day, though it’s not as bad. And there’s so many other psychological side-effects, as well.
I pretended I was fine for the first year, but I wasn’t aware of so many things in my life. I wasn’t aware of myself as an individual and a young mum – I had to change my whole way of life and I didn’t know how to do that. When I went for a check up after a year and saw the scans of my skull, that was quite triggering, and I couldn’t keep pretending it was fine. It brought up a lot of post-traumatic stress (PTSD), and I sort of wasted away as a person, which in turn had a huge fallout on my family and my two daughters.
I’m fascinated with my brain’s capacity to be retrained with daily neuroplasticity tools
BF: What was the process of recovering from that realisation and getting to where you are now?
A: Once I hit that low point, I had to start finding myself again. My mental health declined and the fallout was fight or flight on my physical body. Luckily, my mum and sister helped me through the process of finding a psychologist and the right mental health team who were a great fit for me. He introduced me to meditation and yoga as part of the treatment plan for PTSD.
It was the most beautiful insightful path to learning firstly about exactly what had happened to my brain and body and then to understand how to reconnect them, by just being the best version of myself as I could be. No matter what else is going on in the world, as mad as it is – and look where we are now – you can still be kind to yourself and others, and connect to your roots.
My one constant where I gained almighty courage, persistence & strength came from my family and where I grew up, in the Pilbara region of WA. My Mum and Dad are both amazing people and were very connected to the community, and I have so much respect for them. They raised four children in the searing Marble Bar & Port Hedland heat, adversities at their doorstep. Our rare & unique childhood was engulfed with love, nature & adventures.
BF: What advice would you give to someone after being diagnosed with aneurysm, or about to have brain surgery?
A: It’s certainly not a hopeless diagnosis in this day and age – it’s a standard surgery, so that isn’t the complicated or difficult part of it. It’s the after-effects, which I guess is true for many surgeries. It impacts your life so much, and it doesn’t just happen to you, it happens to your whole family. So then it’s important to bring beautiful things into your life to outweigh the bad – even just waking up with a smile one day, which doesn’t happen straight away. But it’s such a beautiful feeling when you start to realise that these little moments of happiness are coming back into your life.
Above all, the thing is to always reach out. I wanted to touch base and try to give hope to people who have been in that state of hopelessness. I’ve been on that cliff edge, but focusing on connection is so important. It can be a lonely, isolating place in your own head. Looking back, I should have asked for family support at that crucial time, but I was almost ‘ashamed’ to speak up. It’s easy to be misunderstood with an ABI (acquired brain injury), so having gentle, kind connections with your support team is important.
However, with knowledge comes power. I’m fascinated with my brain’s capacity to be retrained with daily neuroplasticity tools, and I’m currently studying a Diploma in Positive Psychology (Langley Institute). Learning more and developing kind connections with people has led me to find myself again, and I can hold my loved ones close once more.
Resources and Support
While Andy’s aneurysm was successfully treated, these anomalies can sometimes burst, resulting in a stroke. The most common symptom of a burst aneurysm is a sudden, extreme headache. If you think you might have an aneurysm, it’s important to seek medical help immediately. Go to the nearest emergency department or call an ambulance on triple zero (000) if you are experiencing stroke symptoms.
You can read our fact sheet on stroke vs aneurysm to learn more.
However, even after surviving an aneurysm, these disorders can continue to affect peoples’ lives and families. Brain Injury Australia is an organisation that provides resources to people living with acquired brain injuries. Please see their directory of Brain Injury Services to find support groups and services in your state. You can also find support groups on Facebook to connect with other people going through similar experiences.
This interview was first published in our Summer 2020-21 Brainwaves Newsletter.