Jack’s* Chiari malformation diagnosis story

Jack, 25, experienced severe headaches from the age of 16 as a result of a Chiari malformation. It is a condition where part of the brain pushes down through the base of the skull into the spine.

In 2015, when Jack was 16, he began having headaches which he described as “at the very high end of the pain scale”. He
also experienced other symptoms including issues with his balance and coordination and fatigue. He “put up with it for a bit” but as the pain continued he knew he needed medical support.

Jack says he was initially told his headaches were due to exam stress.

He said: “I knew there was something more to it because none of my peers in college were having what I was having and didn’t
seem to be struggling as much as me.”

After his exams Jack persisted in seeking a diagnosis over two years thanks to encouragement from his mother.

GPs worked to rule out a tumour and other conditions. He was referred for an MRI and only then was diagnosed with a Chiari malformation.

Jack said: “Eventually it got to the point where I just needed an answer.

“I knew there was something there. I wouldn’t just keep going back and keep putting myself through that for no reason

“It’s very dispiriting to be disbelieved. I feel there’s people out there who are really, really suffering and will have given up trying to get treatment.

“There needs to be greater awareness of the painful implications of a condition like mine, otherwise people will continue to suffer without a quick resolution.”

After diagnosis Jack received surgery within six months of being approved.

He said: “After the first surgery I felt loads better. The pain was still there but it was much, much, much reduced.

“The headaches would go away with paracetamol whereas before no amount of drug would touch it. I’m so much better, and I could have been better earlier.”

Jack also had a second surgery in 2019 and is now studying for a health course.

He said: “I’m using my own experience as I feel I can empathise a lot better than the average person. I’ve turned a bad thing into a good thing.”

Jack’s story is one of the case studies in The Brain Charity’s report on the delayed diagnosis and misdiagnosis of neurological conditions. Read our It’s all in your head report here.

*Jack is a pseudonym to preserve anonymity