When retired nurse Rose Kruze started suffering from debilitating headaches she had no idea they were a symptom of something more sinister.
“It’s just pounding in the head — you just can’t even think,” she said.
“I stopped from being very active to being sedentary and just laying in bed all day.”
The Townsville grandmother put her pain down to sinus or tension issues, seeking temporary relief with icepacks and coffee.
But after six weeks, the throbbing headaches became too much to bear.
It turned out that cerebrospinal fluid (CSF) was leaking from a tiny hole in the 63-year-old’s spinal chord.
The leak caused intracranial hypotension, a condition where there is abnormally low pressure in the skull.
“The brain floats on fluid,” Townsville neurosurgeon Ramon Navarro said.
“If you take the fluid from below, the brain is going to sag, and can give you all these headaches.”
‘Private investigator job’
The condition is known to affect an estimated five in 100,000 people, but the true number is believed to be much higher.
Dr Navarro said the condition was widely under-diagnosed because the leaks were so challenging to find.
“It’s a little bit like a private investigator job to find the leak that’s causing all these problems,” he said.
After a series of scans and tests, doctors found the source of Ms Kruze’s headaches — a “pinhole” that was constantly leaking fluid through the spinal canal.
Interventional neuroradiologist Muhammad Usman Manzoor navigated a catheter through the veins of her leg and used special glue to plug the hole.
He believes the procedure, performed at the Townsville University hospital in November last year, was a Queensland first.
“Once we had plugged that fistula, we knew it was an instant cure for the disease,” Dr Manzoor said.
The procedure was less invasive than other treatments and meant Ms Kruze only spent one night in hospital.
She now has her life back and has the energy to keep up with her eight grandchildren.
‘Such a rare diagnosis’
Doctors believe a lack of awareness about CSF leaks means many more patients are suffering in silence.
Dr Manzoor said the cause of the leak was unknown in most cases.
“Because it is such a rare diagnosis, people can just be lingering on with the symptoms for many months or years,” he said.
Ms Kruze sought solace in a Facebook group of other self-described “leakers”.
“A lot of them have found that doctors haven’t taken them seriously, have put them on all sorts of medications or done surgeries and things, and they’re struggling,” she said.
“So I’m very thankful that [my doctors] took it seriously and said, ‘We will find it.’
“It is very real and very debilitating.”
