In 2023, I was in a serious motor vehicle collision. The injury that followed, a vertebral artery dissection, required real recovery. I did the work and thought I had come out the other side. I was looking forward to celebrating my three-year anniversary since the accident. I was feeling grateful. I was not expecting what came next.
The bike
I love spinning. The bike was the first thing I reclaimed after the accident, one of the things that made me feel like myself again. Then one day after an intense ride, something was wrong. My vision blurred. A pulsating pain built at the base of my skull and radiated behind both eyes. That headache lasted two days. I thought I had healed so I kept my schedule and went to work despite the pain being almost debilitating. Looking back, that decision, to minimize, to push through, to not make a fuss, is one I would make differently now. I ignored what my body was telling me for far too long. I want to be honest about that, because I suspect I am not the only person who has done exactly this.
Years of on and off
This has been going on since the accident. Not constantly, but persistently, headaches that arrived, lingered, and receded, then returned. I rationalized (maybe it was hormones, migraines) and adjusted. What I did not fully register was that I was also changing in subtler ways: more irritable, quicker to frustration, shorter with my husband and children than I wanted to be. I would catch myself afterward and feel guilty, unable to bridge the gap between who I know myself to be and how I had just acted. My family has been with me through all of it and I have very young children who cannot always control their behavior. But some evenings I felt like my head would explode even from the stress. My family is the reason why I finally stopped minimizing and started looking for answers. I want to be present for them. I want to be myself again. I want to do the things I love. That motivation has pushed me further than the pain ever would have.
When I finally applied the same rigor to my own case that I would apply to a patient, a coherent picture emerged. My symptoms correlated exactly with a CSF leak. Headache upon standing which improved upon laying flat. The force of a serious motor vehicle collision (enough to dissect a vertebral artery) is sufficient to injure the dura, the membrane surrounding the spinal cord. Small dural tears, particularly at nerve root sleeves in the cervical and upper thoracic spine, can develop after high-energy trauma. They can go undetected for months or years, leaking cerebrospinal fluid slowly, resulting in spontaneous intracranial hypotension. The brain loses its CSF cushion and sags. Headaches worsen upright and ease when lying flat. Over time, the mechanical changes can produce symptoms that extend well beyond headache: mood changes, cognitive fog, fatigue, personality shifts that feel foreign to you and confusing to the people around you. I thought I had recovered from the accident. The dissection healed. The leak, it seems, did not.
A diagnosis worth knowing
There is a syndrome called frontotemporal brain sagging syndrome (FBSS) in which prolonged intracranial hypotension produces behavioral and cognitive changes that can mimic frontotemporal dementia. Cases have been misdiagnosed for years before the underlying CSF leak was found and treated. After treatment, patients recovered. Fully. That possibility, that these symptoms are reversible, is what I want every physician and every patient reading this to hold onto.
The catch is that finding the source of the leak requires specialized expertise. A variant called a CSF-venous fistula, where CSF drains directly into an epidural vein, is invisible on standard MRI and missed by conventional myelography. I am still figuring out the source of my leak and where I should be getting my care.
What I should have done sooner
I am a physician-researcher. I study the systems we build to catch patients early, to prevent deterioration, to close gaps in care. And yet I spent the better part of three years minimizing my own symptoms, accommodating a slow decline, and telling myself it was not serious enough to pursue. That is the part I most want other physicians to hear. We are not good at being patients. We are trained to carry on, to not burden others, to find the most benign explanation and get back to work. That instinct, left unchecked, has a cost. This diagnosis is still relatively new, and there are a few expert centers, but many patients still have to travel to seek care.
I do not know when or if I can get back on the bike. I am still working lightly. I am working toward reclaiming a pain-free me that can think clearly. This requires the diagnosis and the procedure, and I hope to get back to being the mom that is fully present with her kids, that feels like herself again. My family has shown up for me throughout this. Now it is my turn to show up for myself and to tell this story out loud, in case it helps someone else get there faster than I did.
The author is an anonymous physician.
