Experience: a brain surgeon dropped part of my skull on the floor

On a Sunday in May 2017, I was at the gym and using a chest press when there was this pop. It wasn’t a sound – it was more like a sigh in my body. There was no pain, but I went limp. I shuffled along the wall to some mats. I thought I was having a stroke, but I wasn’t slurring and my eyes and arms seemed fine. But my left leg felt numb – it was the weirdest feeling. Lying on my back with my legs bent, both knees stayed upright when I looked at them. When I looked away, the left one fell to the side.

I ended up in A&E for hours at nearby St Thomas’ hospital in London. I was 34, healthy and had started regaining feeling in my leg, so they theorised it was a bruised spine and thought it was safe to discharge me. Overworked staff and shift changes meant that when MRI images of my brain went missing, nobody tracked them down.

At a follow-up appointment days later, my partner, Luke, argued with the consultant. I was still struggling to walk, and assuming I’d had a stroke caused by a blood clot, the consultant wanted to prescribe a high-dose blood thinner. However, Luke – an ICU nurse at the time – demanded a scan.

He saved my life. I returned from a CT scan to find the consultant looking pale: they had found a massive bleed on my brain and were sending me to specialists at King’s College hospital. Blood thinners might have killed me.

Tests confirmed an arteriovenous malformation (AVM) – a mass of tangled blood vessels – had ruptured close to the part of the brain that controls motor function in my limbs, causing a stroke. The consultant neurosurgeon and AVM expert rated it 4 out of 6 on the Spetzler-Martin grading system, which measures complexity, location and size.

Grade 4 is typically considered too risky to remove. But I was young; he said if I was game, he was, too. Without surgery, there was the risk of another serious bleed.

The operation required three neurosurgeons plus supporting teams of anaesthetists and nurses, so it couldn’t happen until July. Those weeks of waiting were hard. My limp disappeared, but knowing the AVM could pop again was terrifying.

The surgery lasted more than 16 hours, and afterwards Luke was called and told it had gone well. However, the doctor sheepishly added: “There’s something we have to declare. We’re really sorry, but we dropped his skull.”

Right at the end, the piece they had taken out got knocked to the floor. Infection was the concern, so they considered 3D-printing a replacement and putting it in months later, but instead cleaned it and dosed me up with extra antibiotics.

Tom with his dog Binks in the West Yorkshire countryside.

I found out days later, when I was woken from my induced coma. But it meant nothing to me because I was on so many drugs, hallucinating visions and crying uncontrollably whenever I was happy or thankful.

I didn’t care. Even now, I find it hilarious that my skull has been on the floor. I love to imagine them picking it up, dusting it off, and saying, “Five-second rule!” The surgeons had pulled about 100 metres of blood vessels out of me for 16 hours. They were exhausted. And they fixed me.

Recovery wasn’t easy. Relearning how to walk was horrible, and I was exhausted for months. For a long time, whenever I tilted my head I could hear brain fluid gurgling. I still have loss of proprioception in my left foot – without looking directly at it, I can’t control it, so I can’t drive manual cars.

I’ve never felt sorry for myself, because I’m just so grateful. It brought Luke and me closer: we got engaged weeks after surgery and married in 2021.

I later learned that, once in surgery, they discovered the AVM was bigger and more complex than first thought. The consultant neurosurgeon now uses my case as evidence that larger AVMs can be removed successfully.

While recuperating, I came across a study that said survivors of life-threatening situations are some of the happiest people. I feel that deeply. You couldn’t design a better life-changing experience. Skull-drop included.

As told to Amy Swales

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