'I woke up with a puffy eye, doctors were shocked I hadn't had a seizure'

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A woman who woke up with a headache and a puffy eye Googled the symptoms and diagnosed herself with inflammation, but a trip to hospital found the truth was much more frightening. In June this year, 41-year-old Nikki Bennett from Abergele, North Wales woke up with her unusual symptoms.

She did some Googling and thought she may have temporal arteritis, which is where the arteries at the side of your head become inflamed. Attending her local A&E, preliminary tests didn’t show anything, but doctors later ordered a CT scan - which revealed a large mass in the front left of her brain.

“Before my diagnosis my life was brilliant,” Nikki said. “I had just changed career from accountancy to customer service in a garage. “When I first got the headache I thought it was temporal arteritis because of the location and the symptoms.

“I had checked on the NHS website and that's what it suggested I had so that's what I presumed it was. I had all the signs and symptoms. I'd had the headache the previous year and had steroids from the doctor for it. When I started to get a slight swelling above my eye, I just thought I needed to go to the doctor’s to get it checked but didn't think it was anything serious.”

Doctors eventually decided to scan Nikki just to calm her nerves, saying they were sure it would be fine. “I didn't realise how serious it was at all until the doctor at the hospital told me they had found a mass,” Nikki said. “I had been checked over by a couple of doctors and because I had a slight pain in my jaw they thought it was due to the dentist but I hadn't been so I knew it wasn't that.

“They did the initial CT scan just to appease me. I just thought it was a type of headache that I had and would be fine after steroids. I had had steroids in the A&E department the previous evening and they helped so just thought I needed a longer course. I presumed the CT wouldn't show anything, and that I would get some steroids and be sent home.”

Nikki found out that she had a brain tumour the size of an orange, and was quickly referred to The Walton Centre NHS Foundation Trust, where within days of the discovery she was booked in for emergency surgery to remove the tumour. “I was surprised when they initially told me, but very quickly I was on autopilot, finding out what the next steps were and getting the ball rolling,” she explains.

"There was no way I was letting this mass get the better of me. Other than the little headache in my temple and my eyelid looking different, I would’ve had no idea I had a brain tumour. When I found out about the diagnosis, I just went into autopilot. I was calm and just taking in everything they were saying.

“I knew I was in good hands and I just did as they needed me to do. I didn't overly worry because I didn't have any facts. I had melanoma in 2013 so I knew I needed to stay calm, not get stressed and just wait for details as and when they found them out.”

Nikki’s team of doctors at The Walton Centre were very surprised that, with the size of the mass, she was still going to the gym and driving and that she hadn’t suffered a seizure. “My surgeon was very specific that I was not to continue with strenuous activity, as a seizure could be fatal,” Nikki said. “This news was a big shock to us, but we knew it had to be taken seriously.”

After the tumour was successfully removed, Nikki recovered in the hospital, but once she got home, after 10 days, she began to feel the headache again. She called the neuro-oncology specialist clinical nursing team, who told her to return to the hospital immediately.

After further investigations, she was readmitted to intensive care, with what turned out to be meningitis. Despite the stress of meningitis on top of her tumour, Nikki speaks positively about her hospital experience.

“I feel incredible now,” Nikki explains. “I had the setback of meningitis 10 days post-op and ended up back in the Walton again for three and a half weeks. The care from everyone in the hospital is commendable. You are treated impeccably from the moment you arrive and I think that's so important for a successful recovery.

“I have come off all my painkillers, I walk a lot and have started exercising now I have had the ok from the doctor. I am waiting on my skull replacement surgery in January so for now I am taking on the 99 Miles in November challenge to raise money for Brain Tumour Research and I will enjoy Christmas and be ready for my surgery in January.”

Liam, Nikki’s husband, stayed in the charity-funded Home from Home relatives’ accommodation while she was receiving life-saving treatment. Inspired by this and the care Nikki received, he’s hoping to raise over £5,000 for the hospital next year by taking on a series of challenges including a marathon and an Ironman.

Nikki and Liam both want to raise awareness of brain tumours and champion more brain tumour research, earlier diagnosis and development in treatment. “Liam and myself want to really push for more awareness into the signs and symptoms of brain tumours,” Nikki adds.

“The more we read and hear about brain conditions the more we see that not enough is known about what to look for and when to act. I'm so lucky they caught mine and I didn't have a seizure as the tumour was the size of an orange. A seizure would have been fatal before it was removed and I'm so lucky I managed to have it removed so quickly.

“The care you receive from the minute you are in the care of the Walton is second to none. They looked after me and my husband Liam impeccably - I cannot thank them enough for what they did for me and my family. They saved my life!”

Find out more about Liam’s fundraising challenge at https://www.thewaltoncentrecharity.org/fundraisers/zero-to-hero-charity-challenge

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