Portrait: Flavia
In January 2021, I had been feeling off for a while. I went to see an ophthalmologist. From that point on, it all went very fast. He sent me to get a brain MRI the same day, then I was sent straight to the university hospital. They had identified a 35 mm (about 1.38 in) aneurysm in my brain.
A little bit about Flavia
In January 2021, I had been feeling off for a while. I would get a bit dizzy and my vision was not right. It was nothing major, but something definitely felt wrong. I attributed it to the immense amount of stress I was experiencing in my life at the time.
I eventually went to see an ophthalmologist. From that point on, it all went very fast. He sent me to get a brain MRI the same day, then I was sent straight to the university hospital. They had identified a 35 mm (about 1.38 in) aneurysm in my brain. I had a 5-hour long surgery the next day, awake the whole time, during which they coiled the aneurism and shut down the carotid artery.
The surgery went well, considering how serious it was. I don’t think I was properly realising what was going on.
Encountering problems post-surgery
The problems started a few days following the surgery. The operation created a huge oedema in my brain. My eye shut down completely and ⅓ of my face was paralysed. I couldn’t feel my left arm or foot either. I could no longer coordinate my movements and the headaches were unbearable.
The first three weeks post-surgery, it felt like I was getting worse and worse. I was given the highest possible dose of cortisone which made me swell enormously. I had turned into a deformed monster. Although I was always mentally very present, my body was out of control. It felt like I had a melon in my head weighing on my left side.
Then, things started to get better. The melon started feeling more like a peach, then an apricot, a cherry, and eventually an olive. I got off the cortisone, but it took months before I started looking like myself again. Eventually, after eight months, my eye started showing signs of wanting to open.
Challenges that I manage daily
Today, I have recovered at about 80%. A cranial nerve was too damaged to recover fully so my eye doesn’t quite work with the other. I see double, which has huge consequences on my life: it affects my sense of balance, it makes reading difficult and I can no longer drive, to name a few of the nuisances.
What was missing from my recovery
While the operation was handled swiftly and efficiently, the recovery process was not. I was sent home with no help. I was given a hotline access to the neurosurgeon and the neuro-vascular surgeon who had operated on me. They were very competent but less and less available. My GP is competent, but my issue was way beyond her area of expertise.
My incredible support network
I live alone but luckily, I have an amazing group of friends. They took turns to help me, which, I think, turned out well as the burden spread among 15 people.
Every day, one of them would come to help me and spend the afternoon at my place and work remotely. At first, they would do my shopping, buy my medicine and feed me. Then they helped me with the dangerous tasks like cooking, and when I needed to get off the couch and get my body back, we would go on walks. It turned into a joke as they were making sure someone would “walk Flavia” every day. This went on for about six months. I never felt so loved!
Then, I started taking on more work after about eight months and had a whole new set of problems. When my eye opened and was not functioning properly, I started to experience big headaches and neck pain. That went on for months and I thought I would have to give up working, which was very distressing. Eventually, I got to see a super neuro-ophthalmologist who’s been working with me since to optimise my vision and alleviate the pain. I wish I had seen her sooner in the process.
During those months, I suffered from PTSD and lost about ⅓ of my hair. It eventually grew back.
Where I am today
Things are far from perfect, but my life is acceptable. I work at about 80% of my pre-brain injury capacity and I am back out there, hiking, swimming and even skiing when conditions are good! Functioning with one carotid artery is a bit debilitating for someone who likes to do these things, but I can manage as long as I follow certain rules: no high altitude, no scaring myself for fun, no more than two glasses of wine and sometimes I just need to rest.
I will not physically recover more than I have so far, but I feel like my brain is working around the issues.
I am a happier person now than I ever was. I used to suffer from stress and depression. Not anymore. I was given a few more years to live and I intend to enjoy them. However, I do suffer from anxiety, mainly at night.
Advice I would give to other survivors
There are two pieces of advice I would like to give anyone who is going through such thing:
The 1st one is to always remember the doctor’s prognosis.
Recovering from brain injury is a long process. Some days I felt so low that my life seemed like it had flown miles away from me and I was stuck in one I didn’t want. I was not seeing the end of it as I was not seeing any progress. But I would focus my mind on what the doctor had said: “It will get worse before it gets better. It will take a long time, but you will come back from this.”
And I did come back a long way.
The 2nd one is to get off the couch as soon as possible.
After a couple of months struggling with my body and under massive doses of cortisone, there was a point when I was only comfortable when lying down. It took all I had to force myself out of that position and get moving. All my muscles were in pain and I couldn’t wait to sink back into the couch. But exercise is how I got my body back.
When something like this happens, we have an excellent excuse to indulge but it doesn’t do us any favor.
Lastly, I would advocate for prevention. I believe everyone should have a brain scan past 30 years old to detect aneurysms and treat them before they swell or rupture.