Kendra Jackson, 52, of Omaha, had coughing, sneezing, a chronic runny nose, and migraine headaches for nearly 2½ years. The symptoms started after she had a serious head injury in a car accident. Her doctors told her the symptoms were probably allergies or a bad cold.
"When it didn't go away, I kept going back and forth to the doctors, and they prescribed every kind of medicine you can think of, and my nose just kept on running," she told CNN.
This year, Jackson sought the care of doctors at Nebraska Medicine, who quickly realized her symptoms were likely due to something more serious. A CT scan revealed she had a rare condition -- a cerebrospinal fluid (or CSF) leak -- caused by a tiny hole in the thin bone that separates her brain and nasal cavities.
Christie Barnes, MD, a rhinologist at Nebraska Medicine who treated Jackson, says she knew just after examining her that a CSF leak probably was causing her to lose about a half-liter of fluid every day.
“Her description of the drainage that she had -- it’s not typical for allergies,” Barnes says. “She would wake up in the morning and the front of her shirt was saturated with fluid. And she would have a gush of fluid -- tablespoons of fluid -- from her nose. So it was not just a nuisance drip that you’d get from allergies.”
While the condition is rare, it is common enough that a patient advocacy group -- the CSF Leak Foundation -- has formed to raise awareness. Specialists estimate the condition affects about five of every 100,000 people worldwide each year, often because of a head injury, but it is often misdiagnosed.
A CSF leak usually comes from a small tear or hole in the thin outer membrane that contains the fluid that surrounds and protects the spinal cord and brain. Losing that fluid reduces its cushioning effect and causes pressure, headaches that are worse when you sit upright, nausea and vomiting, neck pain or stiffness, a sense of imbalance, sensitivity to light and sound, and drainage from the nose or ear.
It can also cause blurred or double vision, eye pain, hearing problems, tinnitus, spasms, seizures, and other symptoms. In severe cases, it can be debilitating.
Often, a leak will heal on its own with bed rest, increased fluids, and caffeine. But other cases, such as Jackson’s, require corrective surgery.
Although CSF leaks were first documented in the 1930s, they are often misdiagnosed today -- particularly as migraine, sinusitis, or, as in Jackson’s case, allergies.
After examining Jackson, Barnes says, the clinic collected and analyzed her nasal fluids to confirm the diagnosis. A follow-up CT scan revealed a tiny hole in the potato-chip-thin layer of her skull -- probably caused or worsened by the accident, Barnes says, which allowed the fluid to drip into her nose and mouth.
To treat it, Barnes and another surgeon at Nebraska Medicine did surgery to plug the hole in Jackson’s skull on April 23, using tissue from her nose and abdomen.
“I went in through her nose, found the hole … and then I borrowed a small amount of abdominal fat and used that to create a fat patch to seal the leak, and over that I placed a piece of skin [from the] lining in her nose just to seal it,” she says.
Three weeks later, Jackson is healed and no longer has the chronic drip.
“She’s doing very well,” Barnes says. “She’s still having mild headaches, but she’s relieved not to have the drainage anymore.”
Barnes says she didn’t expect all the media attention Jackson's case has generated.
“It is a little surprising,” she says. “But, from my standpoint [the case shows] a lot has changed over the years about how we treat leakages. What’s so exciting about this from a medical standpoint is we’re able to treat her with a minimally invasive procedure. That wasn’t true 10, 15 years ago.”