Nursery worker, 44, suffers permanent brain freeze after her vital organ slipped into her spinal cord

December 14, 2018  15:19

A former nursery worker battled permanent brain freeze after a condition caused her brain tissue to slip into her spinal cord.

Alison Stiles Johnson, 44, of Newcastle, was diagnosed with chiari malformation in December 2016 after initially dismissing her crippling headaches as a side effect of the flu jab.

Chiari malformation occurs when part of the skull presses on the brain, forcing its tissue into the spinal canal.

Ms Stiles Johnson, who had recently got engaged when the ordeal started, likened the pain to 'an ice cream headache that wouldn't leave'.

She underwent an operation in March last year to remove a section of her skull. This gave her brain more room and stopped it pressing on her backbone.

Although she still suffers occasional pain, as well as memory loss and speech problems, Ms Stiles Johnson refuses to let her condition hold her back and married her now-husband Michael Pearson, 38, in Italy last July.

The Brain & Spine Foundation in the UK and the National Institute of Neurological Disorders and Stroke in the US both estimate one in every 1,000 people are born with chiari malformation.

The disorder may actually be more common due to not all sufferers developing symptoms.

Speaking of her ordeal, Ms Stiles Johnson said: 'I initially thought it was the after-effects of my flu jab. But there was a pressure behind my right eye, and my vision was becoming blurred.

'The pain was like an ice cream headache that just wouldn't leave. My speech was awful, I was unable to finish a sentence and it felt like I was permanently drunk.

'Little did I know that my brain was actually crushing my spine.'
Ms Stiles Johnson went under the knife four months after she was diagnosed.

'During the op, doctors had to cut away part of my skull at the back of my neck, taking out some of the muscle,' she said. 'It was an attempt at decompression, to stop my brain crushing my spine and to prevent the condition from progressing.'

Refusing to let her disorder define her, Mrs Stiles Johnson only took one month off to recover while she was studying a Masters degree in tourism and events at the University of Sunderland.

The graduate even went ahead with her wedding plans just four months after the surgery, despite the flight causing her even more pain.

'My husband had proposed before diagnosis and he'd stuck by me, even through all the pain,' she said. 'So even though I was still in so much pain, we took both sets of parents and jetted off to Italy.

'I don't give up, and even though the high pressure of flying hurt me more, I was determined.

'I completed my Masters and got married. Not everyone would have been able to do that.'

Ms Stiles Johnson is in too much pain to work but hopes to one day pursue a career in tourism and events.

Despite her optimism, the surgery was not a permanent cure with only 20 per cent of patients going on to have no symptoms. Many even suffer changes to their personalities as a result of the procedure.

'I surprised myself,' Mrs Stiles Johnson said. 'I was the same person, but I don't fully understand the damage that's been done. I felt like the diagnosis was never fully explained to me and I just wanted a way to escape the pain.

'Now, I take daily medication but it feels like my neck can't hold my head up. It's felt like an out of body experience, but I've refused to give up.'

Mrs Stiles Johnson is speaking out to raise awareness of the poorly understood condition.

'I feel like it was never fully explained to me,' she said. 'I'm still searching for a way to live comfortably with the condition.'


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