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Dream comes true for student with rare brain and spine condition

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Published on 07 December 2018

Graduate Alison with husband Michael
Graduate Alison with husband Michael

A university student who took on the fight of her life after being diagnosed with a chronic brain condition has achieved her graduation dream.

Alison Stiles Johnson had just started her MSc Tourism and Events at the University of Sunderland when she received news that was set to change her life forever.

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

But despite that pain, the student, from Wideopen in North Tyneside, has managed to beat the odds to complete her Masters, and has now graduated during the winter Academic Awards at the Stadium of Light.

The former nursery nurse has come a long way since she first started feeling ill during the Autumn of 2016.

Alison, 44, had a flu jab on October 15, 2016 and a few days later she began to feel unwell.

She said: “At first I thought it was a reaction to the injection but then it became obvious something wasn’t right. It was like someone had switched a pressure switch behind by 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.”

For the next few weeks, Alison spent her time going from doctor to doctor, drop-in centres to medical wards, without any resulting diagnosis.

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.

Alison, originally from Sunderland, underwent the scan just a few weeks before Christmas. Then, during the holidays her 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.

“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 with her.

“Of course, I looked up the worst case scenario and started panicking,” she recalls. “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.

“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 (RVI) 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.

She said: “I was in hospital for five days before undergoing a three month period of recouperation at home.”

But despite the operation, Alison is far from free of the condition. Instead, it is something she has to manage on a day-to-day basis, using pain-numbing medication.

She said: “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, all of Alison’s studies at the University of Sunderland 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 Alison 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.”

And complete it she did, graduating at the University’s winter Academic Awards at the Stadium of Light on November 30 this year.

“My condition means that 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 who have supported the couple, family, and friends in Sorrento.