Brain Foundation urging awareness of often under-diagnosed cerebrospinal fluid leaks

Brain Foundation urging awareness of often under-diagnosed cerebrospinal fluid leaks

Six years ago, Danya Hodgetts was struck by a debilitating headache that would not go away. 

“When I got quite bad, when I was bedridden, I basically couldn’t be upright at all. I got about 20 minutes a day of upright time so I could quickly have a shower, have something to eat, and then back into bed.

“As soon as I got upright, I had vertigo and felt like I wanted to vomit.”

The CQ University sport researcher was originally misdiagnosed with migraines and chronic fatigue.

At her lowest point, the mother-of-three spent 18 months in bed.

But she felt so unconvinced by her original diagnoses, she started reading university-level papers and became certain she was suffering from a spinal cerebrospinal fluid (CSF) leak.

“I’m talking about reading medical journals, rather than just Doctor Google,” Dr Hodgetts said.

Brain Foundation urging awareness of often under-diagnosed cerebrospinal fluid leaks
Dr Hodgetts says the journey to her diagnosis, which included significant travel interstate, was difficult.(ABC Capricornia: Jasmine Hines)

After four years and two explorative surgeries, her condition was confirmed.

“It was very validating,” she said.

“I knew my symptoms better than anyone else and I read a lot of the literature about spinal fluid leaks and how difficult they are to detect.”

The Brain Foundation said CSF leaks are an under-diagnosed cause of headaches that are treatable.

The charity is urging greater community awareness about the condition.

What is it?

Matthew Kiernan, co-director of the Brain and Mind Centre at the University of Sydney and president of the Brain Foundation, said postural headaches should raise alarm bells to see a specialist.

A man with dark hair wearing a suit smiling. There is a park in the background
Matthew Kiernan says postural headaches can signal a CSF leak.(Supplied: Brain Foundation)

“So, as [people are] lying down, the headache goes away and as soon as they stand up [it’s] a very severe headache,” he said.

“That sort of postural type headache that is persistent, going on for days, that usually is [where] you start to wonder, is there a CSF leak?”

Professor Kiernan says CSF leaks are “very uncommon” and affect about one in 200,000 people.

They occur when the lining where brain fluid circulates tears or opens and are most often caused by lumbar punctures and trauma, but often there isn’t a clear reason why someone has the condition.

‘Speed dating’ doctors

Dr Hodgetts said she felt dismissed by several doctors when she was trying to get help for her CSF leak.

“Sometimes it was like speed-dating doctors. You’re trying to convince them you’re sick, that there’s something wrong with you, but also that you’re not crazy,” she said.

Dr Hodgetts said some doctors suggested her pain was purely psychological, so she saw psychologists to help her manage it and to prove at appointments that her suffering was physical.

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