Developing a low-pressure headache after receiving epidural anesthesia in childbirth is not uncommon: New mothers are often warned about the possibility that an anesthetist’s needle can slip just a hair too far, piercing the dura, allowing cerebrospinal fluid to escape, and resulting in what is euphemistically called an “epidural headache” or “post dural puncture headache.” But that’s not what happened to Nicole. Here is her story.
Nicole had no anesthesia at all during her labor with her son in October of 2014, no epidural, nothing—there was no time. Her son’s labor was what’s termed “precipitous”: He was born roughly 30 minutes after Nicole’s first contraction. This was Nicole’s second child, so she knew what to expect. But the delivery was faster and harder than anyone could have predicted, and afterwards, her head hurt. A lot.
Women who experience low-pressure headaches after childbirth are usually offered an epidural blood patch, an infusion of their own blood injected low in the back, in roughly the same place where the epidural anesthesia was administered. But because Nicole hadn’t had an epidural during the birth, her headaches weren’t considered suspicious for a puncture-induced spinal CSF leak, and she was not given a blood patch. Instead, her headaches were attributed to normal postpartum readjustment and lack of sleep. And so she forged ahead with her life, caring for a four year old and a newborn.
By New Year’s Eve, things had become unbearable. Nicole remembers sitting with her family for dinner that night and realizing that she was having a hard time thinking clearly. “I felt completely nauseous. It was like I was drunk, but I hadn’t been drinking. I went to bed and didn’t wake up till the next day. From then on, I barely could sit up. I couldn’t hold the baby, I needed help to do normal things. And the headaches just were horrible. I had to lay down all the time.”
In January, an inadvertent injury gave her some paradoxical relief. She experienced sudden excruciating pain in her hips one day as she was doing laundry, to the point that she had to go to the ER. The doctors there diagnosed her with a sacroiliac joint issue, which they also attributed to her recent pregnancy. She was given medication for the SI join pain, but she was also told to go on bed rest, and that’s when she noticed that her headaches improved—not from the drugs, but from laying down. Once she started going to physical therapy for her SI joint, she realized the headaches were much worse when she was upright. She sought help with the headaches from her primary care physician and obstetrician, but they still considered these headaches to be a postpartum issue that should resolve in time without intervention.
Unfortunately, her headaches did not resolve. In fact, Nicole’s symptoms intensified. She lost dramatic amounts of weight. She started to lose her sense of smell, her sense of taste. She found it difficult to hear, and her vision became blurry. She was only able to be upright for a few minutes at a time. Finally, she consulted with a neurologist.
Nicole, like many spinal CSF leak patients, is normally indefatigable, high-achieving, and laser-focused. Even while incapacitated, she managed to work full-time from home, from her bed. In addition to this, she also tracked and did research on her symptoms. So when she went to the neurologist, she went armed with two pages of documentation about everything that had been happening to her since her son was born. She also had a theory: she’d come across a story about a man who had a spinal CSF leak, and the most intriguing detail to her was that he said when he laid his head down, his headache went away—just like her.
But when she shared this theory with her doctor, that her headaches and other symptoms might be caused by a spinal CSF leak, Nicole says, “That doctor looked at me and laughed. He said, ‘You need to stop going on the internet and googling things. You have a migraine. You don’t need any scans.’ ” He sent her off with migraine medication—medication which, unbeknownst to her, also lowered CSF pressure. Immediately upon taking the medication, Nicole felt worse. Her vision started to go, she couldn’t hear, and she had the curious sensation that she was watching herself from outside herself, like she was separated from reality. She stopped taking the medication.
By this point, Nicole was fully confined to bed and had moved in with her parents. The pain, and the way she was being treated by the doctors she saw, contributed to a feeling of depression and hopelessness. But Nicole got back to her research. She managed to find a medical practice that focused on spinal pain, and she set up an appointment. This time, she tried to be a “good patient,” and did not arrive with bundles of papers documenting her symptoms, or theories that might get her laughed out of the office. So Nicole was surprised when, after giving her history, the doctor she was consulting with didn’t laugh at all. In fact, to her surprise, he told her he suspected exactly what she had been suspecting all along: that she might have a spinal CSF leak.
He sent her directly from his office to a nearby hospital for an MRI with contrast, and waited with her until the results could be interpreted. They were unequivocal, showing marked tonsillar descent and enhancement around the brain. She was sent back to the pain and spine practice for an epidural blood patch.
The doctors at the practice had never seen a spinal leak that wasn’t related to surgery, and they were not experienced enough to be able to detect the exact location of the leak on Nicole’s MRI. But they knew the general region to target. The blood patch gave Nicole a few days of relief, but once she noticed her hearing starting to deteriorate again, she went back to the doctor. This time, she shared some of her research. She had learned from an online support group about a hospital where there were experts in treating spinal CSF leaks, and she asked her doctor if it might be worth going there. He did a little research of his own, and agreed to forward her records. Soon, she got a phone call: the experts told her they had reviewed her scans, and they could see exactly where her leak was.
Nicole was scheduled for a targeted blood patch with fibrin glue. When the doctor performed a lumbar puncture as part of the testing process, he confirmed that Nicole had an opening cerebrospinal fluid pressure of zero. After being patched, while in the recovery bay, Nicole experienced rebound high pressure so severe that she had to be taken back in to have some of her now plentiful cerebrospinal fluid drained. But after that issue was resolved, Nicole felt some relief. It took about two weeks for her symptoms to return.
“It happened slowly, it wasn’t immediate,” she says. “But it was kind of like every day started to get worse. I could barely get up to the bathroom—my mom would make me about four shots of espresso to help me be able to get up, with help, just to go to the bathroom, and then go right back to bed.”
She called the experts, and they told her that they suspected her leak might not be an ordinary spinal CSF leak after all. After reviewing her scans and observing her response to the blood patch, they suspected her leak might be due to something called a CSF-venous fistula, which requires surgery to address.
A CSF-venous fistula is an abnormal channel between the space where cerebrospinal fluid is and a vein outside the dura mater. What this meant was that instead of being circulated within the dura mater, Nicole’s cerebrospinal fluid was being siphoned off through a vein. No matter how much cerebrospinal fluid she produced, that fluid was constantly being whisked away into her circulatory system. This is why the blood patches she’d had offered only temporary relief.
Nicole returned to the experts and had a dynamic myelogram performed, which helped to visualize the CSF-venous fistula. Finally, she had spinal surgery to repair the leak.
The surgery went well, despite some rebound high pressure afterwards, which was managed with medication. “A week after being home, I was able to sit up,” Nicole says. “I held my baby for the first time in months. And it just it kept getting better and better. I was able to move around, I was able to sit, my hearing came back. I could eat again. I could taste, hear, see, smell… Everything.”
Today, four years later, she considers herself 90 to 95% back to baseline. She still feels as though she’s not as sharp, cognitively, as she used to be, and her hearing never completely came back. But, she says, “I’m pretty much back to my normal lifestyle. Right now, I’m upright, I can walk around, I can live life. I’m fully functional.”
The emotional toll, however, is still ongoing. “I don’t have a lot of memories from that year [when I was sick with the spinal CSF leak], which is pretty heartbreaking, because they’re also the memories of my son’s first year. I can’t remember much from then. I feel like that was stolen from me.”
Living with uncertainty is challenging as well. To the casual observer, Nicole’s recovery seems complete and final, but for her it’s an ongoing process. “People don’t want to hear [that you’re still struggling],” she says. “[But] there’s some days where I don’t know what’s going on. Because a simple headache for somebody else is not a simple headache for me. I wonder for days, you know, what is this? Is this a regular headache? Is this a spinal headache? There are still times where I’m like, Oh, my God, is something happening again? Or, how long is this good period going to last?”
But Nicole has been able to make peace with the fact that if something was going to happen again, it would happen, regardless. And so she has decided to live her life, feeling the fear and getting on with things anyway.
Recently, she and her daughter did something Nicole has always wanted to do together: they jumped off a pier into the ocean. And after that? “I went ziplining with my daughter at Girl Scouts,” she says. ‘My mom was like, ‘Are you sure you should be doing that?’ Like, I don’t know! I mean, I think you could say that about everything. And I can’t just live sitting at home on the couch. Or, at least that’s a choice I’m making. I don’t want to live at home sitting on my couch. Until I have to.”