Jackson was in a serious car collision five years ago. In 2013, a woman hit Jackson’s parked van, throwing her face-first into the steering wheel and breaking her shoulder in two places. She needed two surgeries, underwent physical therapy for an entire year, and started having migraine headaches.
But two and half years after the collision, her symptoms started to change and worsen. While she’d had some nasal symptoms — a bit like a small cold or minor sinus problems — clear liquid started to run from her nose.
It got so bad that she was using three to four boxes of tissues a week, and had to carry them with her everywhere. But the symptoms were particularly bad at night.
“When I would wake up in the morning and I would sit up, it was like a waterfall,” she said. Her pillows, nightgown, and bed sheets were soaked with fluid.
Jackson visited multiple doctors, including a specialist, but the diagnoses and treatments didn’t seem to help.
Her runny nose was so bad, for so long, she even started to have suicidal thoughts, she said. No one seemed to be able to figure out what was wrong, or give her a treatment that actually helped.
Finally, Jackson made an appointment with a new ear, nose, and throat specialist at Nebraska Medicine in Omaha.
“I said I am not leaving this office until you tell me what is wrong with me. I was adamant,” she said.
Carla Schneider, the physician assistant who saw her at Nebraska Medicine, knew that the symptoms were worse than a typical allergic rhinitis, which is the medical term for a runny nose due to allergies that is also called hayfever.
“It was evident right away that this was something that was creating a lot of dysfunction in her life,” she told BuzzFeed News. “It was bothering her to the point of just feeling almost kind of depressed about it.”
And the fact that she was waking up covered in fluid “was one red flag,” Schneider said. “Just based on her description of the amount of drainage she was having I knew that wasn’t normal and wasn’t typical for any type of allergic rhinitis.”
Schneider, who works with Dr. Christie Barnes, an ear, nose, and throat specialist, at the practice, suspected right away that Jackson had a cerebrospinal fluid leak. Cerebrospinal fluid surrounds and cushions the brain and spinal cord, filling the open spaces. It is produced and circulates in the central nervous system and it’s highly unusual for it to leak from the nose.
“We keep it on the list for things to always consider,” Schneider said. “Even though it’s not very common, it is something that occurs.” A cerebrospinal fluid leak is dangerous for a number of reasons, mostly because the opening could be an entry point for bacteria or other pathogens and cause a serious infection.
The doctors asked Jackson to collect some of the fluid in a cup so that it could be sent to a lab for testing, which confirmed it was indeed cerebrospinal fluid. She had magnetic resonance imaging to determine the source of the leak, and underwent a procedure in April to repair it.
Barnes and a neurosurgeon grafted a piece of Jackson’s own nasal mucosa, which came from the lining of the nose, over the tiny opening.
The doctors told Jackson that she had been losing half a liter — or more than 16 ounces — of cerebrospinal fluid each day.
Jackson is feeling much better, but still has headaches.
“I feel better today than I did two and half years ago,” said Jackson. “I feel great. If I could get rid of the migraine headaches, I would feel awesome.”
Schneider said an injury from the accident was probably the cause of Jackson’s health problem. “It’s likely that with the impact of the car accident, she suffered an injury to the base of her skull,” she said.
Other things can cause cerebrospinal fluid leaks, including benign intracranial hypertension, which is an unexplained increase in pressure inside the skull.
And there are some differences between a CSF leak and allergic rhinitis, Schneider said.
“Allergic rhinitis will tend to involve both sides of the nose and typically there’s other associated allergy symptoms like sneezing; itchy, watery eyes; and a sense of nasal congestion.”
CSF leaks generally involve one nostril, although it can leak on both sides. “Typically the amount of fluid is copious,” said Schneider. “It’s not just a little sniffle or trickle — you lean over to tie your shoes and you get a gush of fluid.”