Karl’s Chiari malformation story: “Some dads get to put their children on their shoulders, I’ve never been able to”
Karl was diagnosed with Chiari malformation Type 1 in 2016.
Chiari malformation Type 1 is a surprisingly common condition in which the bottom of the brain extends and puts pressure on the spinal cord.
While the condition is most commonly diagnosed in adults, it is thought to often be present from birth.
Karl, 35, had symptoms from when he was a teenager and spent 8 years trying to get a diagnosis.
The dad-of-1, from Wallasey, Wirral, said: “A lot of people felt sorry for me when I finally got a diagnosis but it was a relief.
“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.”
Many people with Chiari malformation are asymptomatic and it is only found if they have an MRI scan.
But Karl faced intense and debilitating neck pain, light-headedness, fatigue and numbness in his arms.
He said: “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, I’ve never got to do that.”
Karl, who also has epilepsy and depression, reached out to The Brain Charity in 2019.
Karl was also offered free counselling to help him come to terms with the diagnosis.
He added: “The Brain Charity helped me get a better understanding of what was going on with me.
“Not just my issues with my Chiari and epilepsy, but the other things going on in my life too.
“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.”
Published: 15 March 2021