Doctors diagnosed her with allergies, a winter cold, and head congestion, but nothing helped. "Everywhere I went I always had a box of Puffs, always stuffed in my pocket," she said.
Kendra said her runny nose was “like a waterfall, continuously.” And, even though doctors claimed it was allergies, she knew something else was going on. It wasn’t until Kendra went to Nebraska Medicine that she learned it wasn't snot coming out of her nose—it was brain fluid.
Doctors diagnosed Kendra with a cerebrospinal fluid (CSF) leak, and told her that she was losing about half a pint of brain fluid a day—the equivalent of a cup of water.
Her doctor ended up using some of Kendra's own fatty tissue to plug the leak, which was caused by a small hole between her skull and nostrils.
Now, she says, she has her life back again. "I don't have to carry around the tissue anymore and I'm getting some sleep," she said.
What is a CSF leak?
You’re probably not familiar with the concept of fluid leaking out of your brain, which is totally fair.
A CSF leak is basically a loss of fluid that cushions and protects your brain, according to Cedars Sinai. One way it can happen is after a lumbar puncture, or spinal tap (often done to test for conditions like meningitis), if the doctor accidentally places a needle through the membrane that keeps your CSF in place in your lower back, says Amit Sachdev, M.D., an assistant professor and director of the Division of Neuromuscular Medicine at Michigan State University. “This source of CSF leak is typically treatable but it can cause a headache,” Sachdev says. (Ya think?)
You can also get a CSF leak when you have a surgery in the base of your skull. “Then the CSF leaks through the nose, which is a fairly dirty place,” Sachdev says. This can create a pathway for an infection to get into your brain, which can be serious, says Santosh Kesari, M.D., Ph.D., a neurologist and chair of the Department of Translational Neurosciences and Neurotherapeutics at the John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, Calif.
And, like Kendra, you can develop a CSF leak after a head trauma, Alexis Jackman, M.D., an otolaryngologist head and neck surgeon at ENT and Allergy Associates, tells Women's Health.
While this all sounds terrifying, know this: Overall, these things are pretty rare, Sachdev says. Still, they happen. “I’ve treated this situation before,” Jackman says.
CSF leak symptoms
Obviously, you’d want to know when you have a brain fluid leak because, OMG. A leaky, runny nose is the major symptom, Kesari says. A CSF-induced runny nose is often watery and usually comes out of just one nostril instead of both, Jackman says. That’s the big tip-off that you’re dealing with a CSF leak and not allergies, although it’s possible for someone with allergies to have a deviated septum that causes a runny nose on one side, she says.
A lack of other typical allergy symptoms like watery, itchy eyes, having a runny nose that doesn’t respond to allergy medication, and having “allergies” that last beyond allergy season or happen even when you’re not exposed to things like dust and pet dander should be big clues that something else is going on, Kesari says.
CSF leak treatment
If your doctor suspects that you have a CSF leak, they’ll order testing of the fluid that’s coming out of your nose, Jackman says. The test specifically looks for beta-2 transferrin, which is something that’s almost exclusively found in CSF fluid, she explains. If you test positive for this, it’s pretty likely you have a CSF leak. However, your doctor will usually order an MRI to try to figure out what’s going on in there, Sachdev says.
Once you have a diagnosis, there are a few options doctors will take. If your leak is minor, your doctor may recommend conservative therapy like bedrest to decrease the pressure in your head, Jackman says. However, surgery to repair the hole is usually mandatory, Sachdev says.
It’s worth pointing out that your brain will replace the fluid that you lost, Jackman says, but again, there’s a big concern with the risk of a brain infection. Plus you’re probably not stoked to have brain fluid leaking out of your nose….
This article originally appeared on Women’s Health US.