Six years ago, Danya Hodgetts was struck by a debilitating headache that would not go away.
Danya Hodgetts spent four years trying to get a diagnosis for her spinal fluid leak
The condition causes headaches and other neurological symptoms
The Brain Foundation says while the condition is rare, more community awareness is needed
“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.
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.
“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.
She said she also enlisted the help of a GP friend to come to her medical appointments as an advocate.
“That helps you try and build up this armour … to show that there is something wrong, you need continued help, and there is something that needs to be treated,” Dr Hodgetts said.
“It’s not like an episode of a medical drama on TV, where it’s all nicely diagnosed and wrapped up with a bow on it in 60 minutes. It is difficult.
“You’re really trying to establish yourself as someone who is not crazy, that you do have legitimate symptoms and that you are in pain.
“It’s a hard thing to convince someone of in 10 minutes or less.”
Leaks ‘the size of a pin’
Professor Kiernan added that CSF leaks were difficult to diagnose due to the nature of the problem.
“CSF fluid is usually clear, and the leaks we’re talking about are like the size of a pin,” he said.
“If it’s down in the spinal region, there’s a whole lot of other stuff down there. There’s bones that go around the spinal cord, there’s nerve roots … and to try to see a leak coming out, it’s virtually impossible.”
While one of Dr Hodgetts CSF leaks has been fixed, doctors suspect she has a second that will need further treatment.