On 29 April 2021, I experienced a sharp and severe onset of a headache. It was the worst pain I have felt but having not been affected by headaches I thought that it was a migraine.
A little bit about Niamh
At 26, most feel invincible, independent but with limited responsibility. A pizza doesn’t leave a week of regret and, whilst the hangovers may be starting to hurt, they are still worth the Friday night before. That is how I felt until April 2021.
On 29 April 2021, I experienced a sharp and severe onset of a headache. It was the worst pain I have felt but having not been affected by headaches I thought that it was a migraine. I planned to take paracetamol and ‘let it pass’ but my mum and fiancée, Josh, convinced me to call 111.
By the time 111 called, I was laying on the sofa, weak and sensitive to light. I was asked to repeat my symptoms and give my family history. I vividly remember being told that I was likely having a brain haemorrhage and that I must get to hospital. I was whisked up by Josh and we sped to A&E. The rest of what happened up until the next morning is retained in my memory like a 1920’s moving film, in disjointed clips and images.
Following a CT scan, I was told I had had a subarachnoid haemorrhage (a bleed between the brain and the skull), an arteriovenous malformation (AVM) and an un-ruptured aneurysm. The next day, I was taken to the National Centre for Neurology and Neurosurgery.
Medical procedures during the Covid pandemic
Covid-19 brought its own struggles. Like so many others I was not allowed any visitors and received that diagnosis alone. I was terrified.
On May 5th 2021, I underwent embolisation of the aneurysm and the AVM through a cerebral angiogram. There is nothing that can prepare you for decisions regarding urgent medical attention, however, there are things that helped me:
- Involve others in your discussions with professionals. I found it hard to take in what was being said and often came away with the scary headline and not the reassuring plan of action.
- Ask questions. Overthinking is likely to be far more harmful.
I consented to undergo vascular embolisation. This is where a specialist radiologist goes in through the artery in your groin or your wrist up through to your brain to ‘seal off’ the problem area - in my case the AVM and aneurysm. I have never had surgery so didn’t know what was next. I spent hours trying to google what to expect (to no avail) so thought it may be helpful to detail my experience for any others going through this now. My experience was as follows:
- I had already been nil by mouth for the morning, this is the only time you will ever long for hospital food.
- The consent forms. I found that this is when having people around is important. You’re being asked to accept the risks in black and white, you can’t escape them and it becomes very real.
- I was then visited by the anaesthetist. She was wonderful and her involvement remains with me. She sat with me for far longer than was necessary and promised she would come see me ‘when I was awake’, always speaking without a doubt that I would be okay, although I knew that no one could give that surety; it was so comforting.
The embolisation was successful removing 95% of the AVM and the aneurysm was ‘coiled’. I had no lasting physical or cognitive defects. I had a follow up angiogram in August '21. It was not until my later scan that I began to process what I had been through, I think because I felt in limbo, unable to process and recover from the trauma in April because the AVM remained, and I was at risk of a further bleed at around 2-4% each year.
When challenges come in two’s
In the months to follow, I had several meetings to discuss ‘what next’. The team explained that whilst the risk of a further bleed was low, it was cumulative. Skimming over the technical bits, my options were surgery or gamma knife radiotherapy. Each had their pros and cons. I realised how much I was affected by my first admission because no matter how hard I tried, I could not see myself opting for surgery. In any event, the advice was to try gamma knife. I was young and healthy, the risk of a further bleed was low and my AVM was small so they were hopeful regarding prognosis.
On November 23rd 2021 the date for my gamma knife radio surgery was confirmed. On November 24th 2021, I was rushed back to the National Centre for Neurology and Neurosurgery following a further haemorrhage.
This bleed was nastier, and my symptoms different. I was back at my table, working. Josh was in the other room. I looked down to my notes when I felt my heart beating rapidly. I am a barrister, and you always have a wave of nerves before any cross-examination. Someone once told me that if you lose those nerves you should give up the post. 5-10 mins into asking questions, the room began to spin, I couldn’t see my notes, nor read the words on the pages. I started feeling more and more nauseous and could hear myself making little sense. As my left side became weak, I knew something was seriously wrong. We broke for lunch, I closed my screen and collapsed to the floor. My head was pounding, the room spinning, my left eye uncontrollably darting left to right. I couldn’t speak. I knew I needed an ambulance, I tried to stand but couldn’t. I crawled to the door and as I lay by the sofa, Josh walked in and rang 999. I then became violently sick. Josh held me up in his arms whilst on the phone to the ambulance service.
The ambulance arrived with two wonderful paramedics. I remember being in the ambulance. I remember trying to go to the toilet at hospital and still not being able to walk. I was wrapped up in a warm blanket with heat being blown onto my legs, there were various other patients being rushed in and treated, life moving at 10000 miles per hour but I was still.
The CT scan confirmed that I had had another bleed, this time it had bled into the brain and caused my brain to swell. I was taken to intensive care for monitoring. Once in ICU I was visited by my neurosurgeon, my mum and Josh who were allowed to be with me. This was a huge relief and so comforting in comparison to the events in April. Being back in hospital was extremely triggering.
Radio surgery was out the window, the initial plan was to allow the swelling to go down, my brain to heal and then operate. This was the plan on the Wednesday but, by the Friday I was told the swelling was dangerously close to the brain stem and they were going to need to operate immediately.
Once I knew that I was going to have to have a procedure that day, I was less fearful this time. Through it again I went, the consent forms, the anaesthetist, being taken down to the operating theatre, putting your life into the hands of another. I woke up hours later, back in ICU. I wiggled my fingers; I was alive and had made it! Then followed a rush of euphoria, and a smile. I noticed my surgeon by my bedside. ‘I think I got it all’, he said. Aside from still being dosed up on morphine, I felt as though this was a dream. My response was less than gracious, muttering ‘thank god as I hate that AVM’ before swiftly throwing up.
How I am coping now
I struggled to believe that the AVM was gone. So as not to jinx it, I hadn’t told anyone but days later, after another angiogram and before discharge they confirmed it was! I am still struggling to come to terms with the fact that this is true. I continue to fear a phone call that they actually missed it or it was all a wild dream. Many people I speak to who have been through recurring trauma and illness say that the path to trusting that you may now be okay is so incredibly difficult. I agree!
I think it’s necessary to take the time to pay gratitude to all those who were involved in my care, from the paramedics to the surgeon who saved my life. Thank you.