Andrea J. Buchanan is a New York Times bestselling author whose latest book is THE BEGINNING OF EVERYTHING. She chronicles her experience with a spinal cerebrospinal fluid (CSF) leak that abruptly derailed her ability to function and to think normally. She leads us through her diagnostic and treatment journey, then through her inspiring recovery. This compelling narrative shall no doubt elevate the awareness and understanding of this underdiagnosed yet treatable disorder, while validating the often trivialized suffering of so many others afflicted. This week, Connie Deline, MD, interviewed Andi to learn more about her experience and this new book.
Would you tell us a bit about your background?
I’m a writer and a mother of two. The Beginning of Everything is my eleventh book, but before I was published as a writer, I trained as a musician, studying classical piano.
Can you share a bit about how your symptoms began and how things went to receive a diagnosis of spinal CSF leak?
Everything started for me with a really bad flu in March of 2015. I had a really high fever and a terrible cough—in fact, it was a coughing fit during this bout with the flu that was the likely culprit of my leak. At first, it was hard to know what was going on, since headache was one of my many flu symptoms. But about a week after I was over the flu, I still had this lingering headache that seemed different from any other headache I’d ever had. It was seemingly constant, for one thing; and it was at the base of my skull, on the right side of my head, very concentrated. It just never seemed to go away—although eventually I began to notice that it improved slightly when I laid down.
Initially, my primary care doctor thought my headache might be due to a sinus infection, and she prescribed a course of antibiotics. When the headache didn’t improve after a few days of the antibiotics, she recommended I have an MRI done. The MRI was read by a radiologist, but also by a neuro-ophthalmologist, a colleague of my then-husband’s, who told me he suspected I might have something called a spontaneous CSF leak. So, I did have a vague possible diagnosis fairly early on—about a month in. However, the doctors I saw didn’t have much experience with CSF leaks in general, and no experience at all with spinal CSF leaks, and so it took far longer for me to find the proper treatment.
At first, I was referred to an ENT (ear, nose, throat surgeon), who assumed I had a cranial leak (despite my lack of any symptoms that would correspond with a skull-based leak). Luckily, I did not go through with the through-the-face brain surgery he recommended. Then I was given a lumbar epidural blood patch, which offered some relief, though not complete remission. I regained some functionality for a period of weeks, but my headache never went away. A few months later, I had a second blood patch and an infusion treatment for pain at a different hospital before finally being referred to Duke, where I was finally successfully treated in January of 2016.
[note that CSF leaks that arise in the head (cranial CSF leaks) and those that arise at the level of the spine (spinal CSF leaks) have entirely different symptoms, underlying causes, complications, testing and treatments, yet misconception about these being part of the same disorder remains pervasive]
Were you surprised by the low level of awareness among physicians?
I was! Especially because I was being evaluated at a world-renowned research hospital, with highly trained specialists and subspecialists. I was surprised that there was no one there who fully recognized what the problem was, let alone how to treat it. Even when I moved to a different hospital, with a well-respected neurology department and headache center—the physicians there did at least know about spinal CSF leaks in general and had encountered patients with leaks, but they were still only able to try to manage the symptoms. Treating it effectively, or curing it, seemed out of reach.
How were you affected in day-to-day life?
It was extremely debilitating. The pain itself was overwhelming. Just this constant, unrelenting softball-sized slap of pain lurking in the back of my skull, at the base of my head. At first, it improved when I would lie down, but after a while, any relief I got from being flat was minimal, and so it was just constant, a 24/7 headache that never got better and got much, much worse if I was upright. And of course, I had to be upright sometimes—I have kids, they needed me to do things, I needed to function. But if I was up more than 10 to 15 minutes at a time, I experienced awful cognitive dysfunction in addition to the constant pain. I explained it to friends at the time as feeling as though I were very, very drunk—I could talk and walk around, the way drunk people can talk and walk around, but it was like “I” wasn’t there. The me that was “Me” felt very far away, not in charge of myself anymore, and lots of times it felt like I was watching myself go through the motions of functioning from a very far distance. I couldn’t think clearly, I couldn’t remember things. Other strange things happened when I was up for too long, too—I would “lose track” of my arms, so that it felt like I didn’t have any arms or hands unless I was looking at them. If I could see them, they existed; otherwise, they were gone. Or I would cry—not from being sad or in pain, just from being upright too long. I’d just realize I had tears streaming down my face. And of course the pain was intense and exhausting. Concentrating on anything was exhausting! I couldn’t follow conversations, I couldn’t make sense of things enough to watch TV. Reading was impossible. I listened to a lot of podcasts just to keep me company, in the dark, lying in bed, as flat as possible, staring at the ceiling.
How was your family affected?
It was a difficult time. A few months before I got my leak, my husband and I had started the process of getting divorced. So it was really hard on my kids, not knowing what was wrong with me or if I’d ever be okay, going through this time of profound uncertainty just as they were also learning that their family would be changing in irrevocable ways. It was a lot at once, and even though I tried to protect them from how scary it was and how much pain I was in, I was also struggling. They were 12 and 15 at the time, so, at a point in their own development that can feel like a crossroads even absent any illness or problems at home. I felt terrible being unable to be as fully physically (and mentally) present for them as I wanted to be during such a crucial time. Luckily, they are great, smart, sweet, resilient kids who are fantastic communicators, so we were able to have the tough conversations we needed to have—and to laugh about it sometimes, as well. They also both had some counseling during that year and afterwards, which helped them cope. Watching your primary parent suddenly no longer be able to do the things you’ve come to depend on them to do, or fill the role they’ve always played in your life, is really unsettling and scary. I was glad they had a safe space to talk about these feelings, in addition to being able to talk to me.
Your path to resolving your leak took some time. What was that like?
Frustrating. With so little known about the condition, and with so many of the symptoms being “invisible”—pain, brain fog, confusion—it felt impossible, sometimes, to be taken seriously, and to see a way out. My diagnosis of spontaneous intracranial hypotension confounded the doctors I saw, none of whom could agree on where, precisely, this “brain leak,” as one of them had called it, might actually be located, or how to cure it. I wished at many points along the way for one expert “master doctor” who could oversee the whole thing and put together all of my disparate symptoms into a single overall governing concept or point of view, instead of my having to float through the fog from one specialist to another, all of whom only saw one puzzle piece of the problem (and who viewed it through the narrow lens of their own specialty). It was also frustrating to have to be my own advocate at a time when I couldn’t think clearly. I kept being told by various doctors that it was “my call” to have procedures done, to be admitted to the hospital, to have certain treatments. But I was in no position to evaluate whether any of those things were good ideas, or the right kind of treatments to pursue. At a certain point in my time while leaking, I couldn’t even remember my own daughter’s birthday! I was in no way capable of being discerning or making informed decisions about my care. And yet, with every doctor I saw before getting to Duke basically shrugging and saying they’d run out of options, that was kind of what I had to do. I also struggled with knowing how hard to push for treatment, and when exactly I’d know when I’d exhausted my local options. I managed to find information online about experts who treated CSF leaks, but I wondered, was my case legitimate enough? Was it extreme enough to warrant involving expert physicians from other states? What if I wasted everyone’s time? What if my case wasn’t serious enough? What if it was just my own personal fault that I wasn’t getting better? Shouldn’t I just try harder and see if that worked? It wasn’t until I broke down in my neurologist’s office, telling her, “I can’t live like this,” that I was finally referred to Duke and a team of doctors who understood how to approach the problem.
When it was evident that recovery from your spinal CSF leak would not be as simple as some might imagine, you self-designed a remarkable rehab program. We would love to hear a bit about that.
If there is comparatively little research about spinal CSF leaks in general and treatment outcomes in particular, there is almost none about the recovery process after treatment. So, while I was able to be told roughly what things I might expect physically in the months after my procedure at Duke, and how long it might take, given a best-case-scenario recovery process, to return to my baseline level of function, I wasn’t given any guidelines about what the recovery process could be like for my brain. We don’t really know exactly what happens to the brain while leaking, what kind of damage is done, and what kind of neurological rehabilitation might be optimal during recovery. So once I was able to read again, I was hungry for information. I craved stories of explorers: mountaineers coming to grips with the limits and capability of the human brain and what it requires to function, monks that were able to regulate autonomic function, regular people who survived stroke or traumatic brain injury. I listened to neuroscience podcasts and read books about the plasticity of the brain, the ways in which the brain adapts to even severe trauma. This lead me to develop my own theory about what might help my own brain recover, as I waited in the purgatory of physically healing from the patches in my spine without knowing for sure if I would start leaking again. The research on neuroplasticity seemed to point to focused, small, repetitive physical movements requiring intense concentration as being the most useful for patients suffering brain damage due to illness, trauma, or stroke. In the books I read and the interviews I listened to, this took the form of practical life exercises, like using a stroke-impaired hand to stack cups or wipe countertops. But what it reminded me of was piano practice.
I’ve studied piano most of my life, and when I was in music school, I was practicing six to eight hours a day—practice that pretty much consisted entirely of focused, small, repetitive physical movements requiring intense concentration. So I decided to try practicing piano as a form of therapy—both to increase my tolerance for sitting upright and hopefully help spark something in my brain. I began with just ten minutes or so a day, playing through basic technique exercises, and gradually increasing my time and branching out into the comfortable muscle memory of old repertoire, and then the unfamiliar territory of new pieces. Within a few weeks, I began to experience the feeling of my brain reconnecting itself, like going from dim sparklers of ideas to full-on fireworks. I still had trouble with executive function and organization, I still lost words and found myself overwhelmed by sound and visual information; but I was able to hold ideas in my head, I was able to make connections between concepts, I was able to have insight. I could also remember things better from one moment to the next, complete tasks more efficiently, have wide-ranging conversations and not lose my train of thought. Did that happen because I had over twenty-five years of high-level music training already in my brain, ready to be reactivated? Would other people have similar results? I wasn’t sure, but it was clear to everyone around me, from my doctors to my family members, that something was happening. The more I practiced piano, the more I invoked the coordination of sight and sound and concentration and memory and physical motion and intellectual analysis, the more I felt my brain return to itself. It was, for me, a crucial part of my recovery.
How did your experience with having a spinal CSF leak change you?
It’s interesting: when I was leaking, and trying to think through this constant pain and brain fog, I felt very cut off from my sense of self. The me that was “Me” felt like it was tucked away somewhere deep inside my brain, like my mind was a passenger in a car that my body and brain were driving. It was deeply unsettling, in an existential sense, and yet also profound, this sense of observing the self from a place of detachment. I was only able the feel full impact of both of those feelings once I began to recover, and I did worry that the experience had changed me, and that the leak had damaged my ability to think, or to think of myself in the same way I always had. Post-leak, I understood that I couldn’t always depend on my brain, on my mind; and that the ways of thinking and responding that I’d always taken for granted might not always be accessible to me. That’s a scary thing to think about, especially when thinking (and writing down those thoughts) is your job. When I started writing again, and specifically beginning to write about my experience with the leak, I was worried that the “Me” on the page was not my usual voice, that having the leak meant I’d lost the ability to write the way I used to be able to. Once I’d finished my first attempt at putting something about this experience down in words, I sent it to my agent, who’s known me for almost 20 years, and asked her, “First of all, is this writing? And second of all, is this me?” It was incredibly reassuring to me when she responded, “Absolutely yes, and yes.”
My path to recovery has been an exercise in living with uncertainty. Will I leak again? Will I always have to be careful about coughing, about lifting heavy things, about twisting and bending? Am I always going to be sensitive to pressure changes? Is there anything I can do to make sure this never happens again? It’s tough when the answers are: possibly, basically, no idea, and no, not really. And yet, to be fair, this uncertainty has always been there. There are no guarantees about anything. I just wasn’t fully aware of it until now. My first year post-patching I called “Year Zero.” It was the start of a brand-new period of my life, physically recovering from having a spinal CSF leak and from the procedure that fixed it, and I spent that year resting, waiting, being cautious, gradually trusting in my tentative healing process, exercising my brain with piano practice and music therapy. This past year, “Year One,” I spent writing this book, revisiting the time when I was most ill and attempting to make sense of an experience that felt senseless, in which I felt senseless. It was its own form of brain therapy and also a grieving process, writing my way through this part of healing and uncertainty, letting story and narrative do its powerful work. Now, as I begin “Year Two,” I hope to keep healing, and to keep growing, and to keep remembering what I experienced so I can keep working to raise awareness about this condition and give hope to those continuing to struggle with it.
THE BEGINNING OF EVERYTHING is available for order HERE.
(a purchase using this link yields a small donation to Spinal CSF Leak Foundation)
Andrea J. Buchanan is a New York Times bestselling author whose latest book is THE BEGINNING OF EVERYTHING. Her other work includes the multimedia young adult novel GIFT, the internationally bestselling THE DARING BOOK FOR GIRLS, her essay collection on early motherhood MOTHER SHOCK: LOVING EVERY (OTHER) MINUTE OF IT, and seven other books. Before becoming a writer, Andi trained as a pianist, earning a bachelor of music degree in piano performance from the Boston Conservatory of Music and a master’s in piano performance from the San Francisco Conservatory. Her last recital was at Carnegie Hall’s Weill Recital Hall. She lives with her family in Philadelphia.