Battling Sunderland University student Alison defies chronic pain to graduate

A university student who defied a cripplingly painful brain condition to complete her studies has achieved her graduation dream.

Friday, 7th December 2018, 10:40 am
Updated Friday, 7th December 2018, 10:55 am
Graduate Alison Stiles Johnson attends the Sunderland University Winter Graduation event at the Stadium of Light with husband Michael

Alison Stiles Johnson had just started her MSc Tourism and Events at the University of Sunderland when she received the life-changing news.

A section of the 44-year-old’s brain was pushing down on her spinal canal, causing her horrific pain.

Graduate Alison Stiles Johnson with husband Michael on their wedding day

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But despite that pain, she beat the odds to complete her Masters, and graduate during the winter Academic Awards at the Stadium of Light.

The former nursery nurse first started feeling ill during the autumn of 2016, a few days after having a flu jab: “At first I thought it was a reaction to the injection but then it became obvious something wasn’t right,” she said.

“It was like someone had switched a pressure switch behind my right eye. I went and got my eyes checked out and they said there was nothing wrong.

“Then I started having problems with my speech and seemed to be having stroke-like symptoms with lots of headaches.”

Alison on her wedding day

For the next few weeks, Alison spent her time going from doctor to doctor, drop-in centres to medical wards, without success. Eventually, in November 2016, she got to see a neurologist at Sunderland Royal Hospital.

“I thought I had a tumour but they said they would send me for an MRI scan to see exactly what the problem was,” she said.

Alison, from Sunderland, underwent the scan just a few weeks before Christmas. Then, during the holiday period, partner Michael, 38, asked her to marry him.

“Three days later I got a letter from the hospital telling me I was suffering from Chiari Malformation, a condition where the lower part of the brain pushes down into the spinal canal,” said Alison.

Alison after her operation

“The letter said I was being referred to a neurosurgeon but that was about it, It didn’t tell me anything about the condition, there were no details.”

Alison Googled her diagnosis in the hope of better understanding exactly what was wrong: “Of course, I looked up the worst case scenario and started panicking,” she recalled.

“I knew the fact I’d been referred to a neurosurgeon was not good. My parents were trying to calm me down while all this was going on.

“It was around this time I was due to go to New York with the university as part of my MSc in Tourism and Events.

Graduate Alison Stiles Johnson

“I had no idea if I’d be able to fly due to the potential pressure build up inside my head. But I’d paid my money and nothing was going to stop me from going.”

Alison underwent a consultation at Newcastle’s Royal Victoria Infirmary, where her surgery was due to take place.

“To be honest, I didn’t take much in,” she said. “I just remember them saying that part of my brain was like a cork in my spine that needed to be pulled out.”

On March 13 2017, Alison underwent her operation, in which surgeons removed a section of her skull, going through muscle before helping ‘uncork’ the trapped area.

“I was in hospital for five days before undergoing a three month period of recuperation at home,” she said.

The operation may have been a success, but Alison is far from free of the condition. It is something she has to manage on a day-to-day basis, using pain-numbing medication.

Graduate Alison Stiles Johnson with husband Michael on their wedding day

“I just have to get on with it. I’m going to pain management and seeing what can be done to stabilise it. From day-to-day I have to cope with a lot of pressure behind my eyes, numbness in my arms and legs, pressure build up on my neck and swelling of my eyelids.”

During this time, Alison’s studies were put on hold. She had managed to complete the first module of her MA but her illness meant she would have to take time out and she was grateful for the help she received from the University.

“I couldn’t fault them, they were really supportive and I always knew I’d be able to go back and complete the MSc,” she said.

“My condition means I look fine, so I get a lot of people saying they’re glad I’m over the illness, when the reality is I just have to live with it.”

Alison and Michael did manage to get married in June this year, in front of both sets of parents, family, and friends in Sorrento.