Sunderland Echo - - Front Page - By Kevin Clark [email protected]­me­ Twit­ter: @kevinclarkjp

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

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-yearold’s brain was push­ing down on her spinal canal, caus­ing her hor­rific pain.

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.”

For the next few weeks, Al­i­son spent her time go­ing from doc­tor to doc­tor, dropin 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.

“The let­ter said I was be­ing re­ferred to a neu­ro­sur­geon but that was about it, It didn’t tell me any- thing 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.

“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.

“I just have to get on with it. I’m go­ing to pain man­age­ment and see­ing what can be done to sta­bilise it. From dayto-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, Italy.

“I’m go­ing to pain man­age­ment and see­ing what can be done to sta­bilise it”


Al­i­son Stiles John­son on her grad­u­a­tion day and, in­set, after the op­er­a­tion.

Michael and Al­i­son

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