Dad’s 8 year battle with ‘intense neck pain’ was brain slipping into his spine
A dad who complained of "intense neck pain" for eight years was diagnosed with a rare condition that pushes his brain into his spine.
Karl Johnston, 35, is speaking out to raise awareness about Chiari Malformation, a condition where the brain pushed down into the spinal cord.
The dad was diagnosed of the disease in 2016 and spent eight years battling symptoms including intense neck pain, light-headedness, fatigue and numbness in his arms.
He said it was a "relief" to finally have an answer because he had been telling people that he had been suffering for years but they didn’t believe him.
Speaking to LiverpoolEcho, Karl, from Wallasey, Wirral, said some days the condition still devastates him because he has never been able to put his daughter on his shoulders.
He 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.”
Chiari Malformation Type 1 is commonly diagnosed in adults but is thought to be a condition that is present from birth.
It is usually asymptomatic and is only found when people have an MRI scan, but Karl said he had symptoms of Chiari since he was a teenager.
Karl has come forward to speak about the disease on behalf of The Brain Charity to help them raise £6,000 in support of people with a neurological condition.
He said the charity helped him "get a better understanding" of his condition and insists there needs to be a "way to make doctors and people in general more ware of these rarer conditions."
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Karl said: "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."
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