Alice’s headache started after a sinus infection—but wouldn’t end until she had surgery to address the CSF-venous fistula causing her spinal CSF leak symptoms.
Alice is one of those people for whom the term “go-getter” was invented. At 58, she walked eight miles a day, attended regular Pilates classes, and was incredibly active as the matriarch of her big family, doing “everything for everybody,” as she put it. But when she got a headache after a sinus infection, she started to slow down. She took over-the-counter cold medicine and antibiotics for the infection, but the nagging headache she’d developed would not relent. Her primary care doctor prescribed her steroids, but those failed to work as well. Alice saw an ENT, who had her undergo at CT scan and ultimately sent her to a neurologist. He suggested that her never-ending headache might be due to some kind of cerebrospinal fluid leak—but he couldn’t be sure. She would need a second opinion.
In the meantime, the normally indefatigable Alice was getting tired. Her eight-mile walks went down to five miles, then three miles, then no miles at all. She felt best after sleeping all night: She would wake up in the morning feeling almost pain-free and like her usual self. Upon standing, however, the pain, brain fog, and exhaustion returned. The holidays were coming, which normally brought her great joy, as she usually hosts huge family parties and makes plates of tamales and other family favorites; but that year, she couldn’t bear it. She told her family she wasn’t up to it, and that made everyone, Alice included, realize exactly how serious this was.
She couldn’t wait any longer for the neurologist to refer her for a second opinion, so she searched online for spinal CSF leak experts and found a specialist near her. Luckily for Alice, the doctor had a cancellation, and she was able to be seen right away. She was incredibly comforted when the specialist told her that just from reviewing her case and listening to her descriptions of her symptoms, he was 95% sure she had a spinal CSF leak. She had further imaging done, and the doctor was able to see exactly where her leak was and target it with a blood patch.
For a year, Alice felt better—no symptoms, no headache. But then about a year after the patch, she had another sinus infection, and soon after she started feeling symptomatic again. She went back to see the specialist, but this time he couldn’t locate the leak. He performed a non-targeted blood patch, but it didn’t offer her any relief. Her headache returned. It felt different this time, in a different location, but she knew what she was feeling was pain from a spinal CSF leak. So she went once again to the specialist, and had another dynamic myelogram. This time, the specialist was able to visualize the leak. What he discovered was that Alice had what’s called a CSF venous fistula: an abnormal channel between the space where cerebrospinal fluid is held and a vein outside the dura matter. This direct communication channel allowed for cerebrospinal fluid to flow directly into her circulatory system, and required surgery to fix.
Her surgery was successful. She experienced numbness in her right leg afterwards, which took some time to recover from, but now, over a year since the surgery, Alice feels almost fully back to normal. She’s back to her eight-mile-a-day walks, her Pilates classes, and her big holiday meals, and considers herself very lucky. She makes sure to share with people what happened to her, as she understands the importance of raising awareness about something like spinal CSF leak that can happen to anyone. “I don’t like to be the center of attention, but I was telling everybody,” she says. “Because it’s so scary to have a headache, and, I mean, at first you think you’ve got a brain tumor, then you think, am I imagining things? People should know about this. So many people have this and they don’t even know what they have.”
Our team at Spinal CSF Leak Foundation wishes to extend our appreciation to all those physicians working so hard to help patients, as well as those who assisted with this feature story.