Dana lives with a chronic, invisible illness. When she was in high school, she began having severe migraines and having a tremendous number of painful symptoms—enough to cause her to miss so much school, she had to complete earning her high school diploma through the Hospital Homebound program while her doctors tried to figure out what was going on. They didn’t, and despite the challenges, she was accepted to Clemson University and in the fall of 2011, she moved into her dorm. Within a few days, before classes even started, her symptoms became so debilitating, she had to move home immediately.
Doctors did an MRI and found a Chiari malformation—meaning her skull is too small for her brain, blocking a regular flow of spinal fluid. She also had a papilledema pressing against her optic nerves, causing blindness. The third of her trifecta was a pseudotumor—giving her all the symptoms of a brain tumor even though there isn’t actually one present. She was rushed into emergency surgery to decompress swelling in her brain from excess spinal fluid. She was bedbound for over a year for recovery and completely dependent on caretakers. Doctors eventually installed a lumboperitoneal shunt in her lower spine to help regulate flow of spinal fluid, but even that wasn’t effective immediately. Not long after she finally recovered, symptoms returned and Dana had another emergency brain decompression surgery, followed by another long period of recovery.
On the outside, Dana looks fine. What people don’t see are the migraines that come every night, the depletion of energy after even the smallest of tasks, her inability to take more than one or two classes per semester because of the workload, or even her inability to hold a job because of how many doctors she still has to see on a regular basis and her health being so unpredictable, she would be deemed an unreliable employee.
Within the past year, her health has started to decline again. She gets migraines regularly, has a hard time completing small tasks, difficulty with auditory processing, lost her ability to safely drive. A few months ago, she started describing what feels like a “puddle” on top of her brain.
Now that she’s an adult, her pediatric neurosurgeon can no longer treat her, so we have found a new one. In December, Dana had another MRI and a new technology called an MRI Cine which showed her spinal fluid is still being blocked by her cerebellar tonsils hanging too low, causing her brain to sag towards her skull. He believes this could be due to her LP shunt (most Chiari patients have a VP shunt installed but Dana’s ventricles were too small), so he’d like to do surgery to clamp off that LP shunt. After that, it’s likely he will schedule her for another brain decompression and install a different shunt in her spine.
This surgery is high-risk. Most Chiari patients have one decompression surgery and Dana has already had two. Going in for a third time means the neurosurgeon will have to cut through scar tissue buildup that may have formed so thickly, it could potentially be attached to her skull.