A lucky coincidence helped connect Katrina to an expert who could correctly diagnose and treat her spinal CSF leak.
Katrina had just returned to Pasadena after a month-long trip to Australia with her boyfriend. She was 29, an interior designer who had just finished graduate school and begun working at her first real job, and she was excited about settling into their new apartment together and starting this new phase of her life.
And then the headache struck.
It came without warning. She had had a glass of wine with friends at a Saturday brunch, and shortly after that, the headache seeped in. She laid down and tried to sleep it off, but the headache continued. She thought it might be a migraine, something she’d experienced as a teenager, but the pain lasted all weekend. She went into work at her new job that Monday and found herself nauseated and sweating, the pain in her head like someone pushing a fist or baseball into the base of her skull at the back of her head.
She left work and went straight to urgent care, where she was diagnosed with a sinus infection and given steroids and a shot of antibiotics. She tried to go back to work the next day, but within two hours, the pain was unbearable. This time, she went to the ER, where she was diagnosed with a migraine and put on a caffeine drip. This helped a little, but again, upon returning to work two days later, she found herself having to leave and go to the ER. This time she was diagnosed with viral meningitis—but a subsequent spinal tap revealed that diagnosis, too, was wrong. The next week, she was able to see a neurologist, who observed her lying flat in his office, listened to her describe her symptoms, and within ten minutes of speaking with her gave her the diagnosis that actually fit: a spinal cerebrospinal fluid (CSF) leak.
When the dura mater, the tough membrane surrounding the brain and spinal cord, has a hole or a tear, cerebrospinal fluid can leak out. This can result in a range of symptoms, with severe positional headache like the kind Katrina experienced being chief among them. A spinal CSF leak can happen due to trauma or injury, due to a medical procedure such as a spinal tap/lumbar puncture or epidural anesthesia, or due to no clear cause at all—what’s called a spontaneous spinal CSF leak.
The neurologist knew enough to recognize a spinal CSF leak, but was unable to offer treatment options. Katrina did her own research and knew that she needed to get an epidural blood patch. She returned to the ER once again and persuaded a nurse to talk to an anesthesiologist about doing a simple blood patch. The nurse was suspicious: like many medical professionals, her knowledge of spinal CSF leak was limited, and she had only ever encountered a patient needing a blood patch in the wake of having received epidural anesthetic during childbirth. Katrina hadn’t given birth, so how could she have a so-called “epidural headache,” as these post-labor headaches are often called? Why would she need a blood patch? But the nurse spoke with an anesthesiologist, and Katrina got her patch. It gave her instant relief that lasted for 36 hours.
Katrina knew from her research that what was happening with her—a headache that had a positional aspect to it, that felt better when she lied down and worse when she stood up; a headache that improved after having a blood patch—was indicative of her having a spinal CSF leak, but she didn’t know what to do next after the benefits of the epidural blood patch wore off.
But then she received a text from a family friend. This friend, who had heard about her situation from Katrina’s mother, happened to attend a Christmas party across the country in New York. She was talking with another friend about Katrina’s strange endless headache, when another guest at the party came up and said, “I’m sorry, are you talking about somebody that has a CSF leak?” This other Christmas party guest had also experienced a spontaneous spinal CSF leak, and in fact was a moderator for an online support group for CSF leak patients. The friend passed the woman’s number on to Katrina, and Katrina called. The two spoke for an hour, sharing their stories. Katrina came away from the conversation comforted but also armed with a plan: there was a local expert doctor who specialized in spontaneous spinal CSF leaks like hers, and she would see him.
Ultimately, the specialist had her undergo an MRI myelogram, which revealed an extensive leak in her lower thoracic spine. She was given an epidural blood patch at more than one spinal level. Unlike the first blood patch Katrina had, the results were long-lasting. Sometimes, for some patients, one or two blood patches is all it takes. Katrina was one of these lucky patients. This bi-level blood patch offered her not just 36 hours of relief, but a month. And then three months. And then six months. And then a year.
Her recovery was painful and slow, and complicated by withdrawal symptoms when she stopped taking the medication that had been prescribed to her in the early days of her leak to help her cope with anxiety and pain. She also experienced rebound intracranial hypertension (commonly called rebound high pressure), a feeling in her nose and cheekbones as though the inside of her face was pushing forward. But she was more functional with the rebound high pressure than she was when she was leaking cerebrospinal fluid. She needed to return to work a month after her bi-level patch, and she found herself able to.
Now, a year later, Katrina is almost back to baseline. She still feels some of the rebound high pressure symptoms on days when the weather changes, and she still copes with memory disturbance, but overall she feels almost completely recovered.
The hardest part about being sick with a spinal CSF leak, Katrina says, is how all-encompassing it is when you’re in it. It’s your life, 24 hours a day, and even though lying flat can bring some relief from the head pain, her other symptoms—nausea, ringing in the ears, vertigo—continued. And as Katrina points out, even if you do get better, having had a leak is life-changing. “You’ll always carry that with you, you know?” she says. “You’ll always think of things differently, whether it’s not going on a roller coaster or not taking that big European trip because you’re like, well, if I was really far away, and something happened… It’s always going to be in the back your mind: what if it happens again?” And she wishes that more doctors understood that the condition is a common thing that is easily diagnosed if they know what to look for.
But overall she feels very lucky to have been seen and treated so quickly, and to have had the support she has had—support, she feels, which was crucial to her recovery. From the kindness of the family friend who had that fortuitous conversation and connected Katrina with a person who could connect her with a specialist; to her parents, who made the three-hour drive to be with her multiple times when she was ill; to her mother, who drove Katrina to work her first day back and sat in the car waiting all day, just in case Katrina wasn’t able to make it through; to her friends, who gifted her with a year’s subscription to a meditation app; and her boyfriend, who did the meditations with every night with her before bed. Her boyfriend’s support was especially important. “He’s a helicopter pilot and he had all these big tests going on at the time, and [yet] he would be in the ER with me with his book studying,” Katrina says. His being there, by her side during her illness, provided her with the motivation to keep going, and to not only return to but continue the life they had just been starting together.
Roughly nine months after the procedure she had to fix the leak, almost a year since her leak journey had begun, they were married.
For anyone experiencing a spinal CSF leak, Katrina says, in addition to taking advantage of all the support you can, whether in person or online, and advocating for yourself with doctors and other medical professionals, the main thing that helped her cope was to focus on doing the really small simple things she could to help herself feel better. “When you feel so out of control with so much, focusing on what you do have control over [can help]. While there are days where you maybe go down that black hole of the ‘what if’s and all of that, let yourself have that sad day—but then pick yourself back up the next day and try to get yourself out of that mindset because it really is the only thing you have control over at that point.”