Dad Told His Brain Is Slipping Into Spine After Years Of Neck Pain
A dad was told his brain is slipping into his spine after spending years trying to get a diagnosis for his mysterious neck pain, and is now hoping to raise awareness for his condition.
Karl Johnston, 35, was diagnosed with Chiari Malformation Type 1 - where the brain pushes down into the spinal canal - back in 2016.
He'd suffered for eight years while trying to get to the bottom of his symptoms, which included intense and debilitating neck pain, light-headedness, fatigue and numbness in his arms.
Karl, from Wallasey, Wirral, said: "A lot of people felt sorry for me when I finally got a diagnosis but it was a relief because I'd been telling people that I was suffering for years and they hadn't believed me.
"You start to question yourself about things. Just knowing takes a lot of the weight off you.
"Some days the pain is so much that it's difficult to move around and all I want to do is lie down.
"It's devastating when my daughter wants to play and I'm not up to it.
"Some dads get to put their children on their shoulders, but I've never got to do that."
While Chiari Malformation Type 1 is most commonly diagnosed in adults, it is believed to often be present from birth.
Many people with the condition are asymptomatic, meaning it is only found if they have an MRI scan.
Karl had symptoms from when he was a teenager, but getting a diagnosis was difficult due to the lack of awareness around Chiari Malformation - which meant his GP had never had another patient with the condition before him.
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Karl, who also has epilepsy, has found help from The Brain Charity, a national charity based in Liverpool that supports people with all forms of neurological conditions.
Being able to talk to people at the charity since last year has helped Karl understand how fighting for a diagnosis has affected his life, and is now supporting the charity's #Sixmas appeal to raise £6,000 to help the 1 in 6 people with a neurological condition.
Dad-of-one Karl continued: "The Brain Charity helped me get a better understanding of what was going on with my condition.
"It has felt like so many people haven't taken me seriously but The Brain Charity has.
"They didn't pity me but tried to understand what I was going through.
"There needs to be a way to make doctors and people in general more aware of these rarer conditions because otherwise people just fall through the cracks.
"The Sixmas campaign will help for the charity to support more people like me, giving them the much needed information about their conditions."
This year, The Brain Charity has seen a 70 percent surge in referrals due to the coronavirus pandemic, despite many fundraising events being cancelled.
The charity is now asking people across the UK to organise and participate in sponsored events themed around the number six - either virtually or in a Covid-safe way - to help highlight the fact that one in six people has a neurological condition.
You can also pledge to donate £6 a month to support The Brain Charity to provide practical help, emotional support and social activities for those with such conditions.
Featured Image Credit: Liverpool Echo
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