Bow Hunter's Syndrome Part 2: What, with a dab of why

Bow Hunter's Syndrome is named for people who shoot arrows at wildlife. In order to do so, they have to turn their heads hard to one side and hold that position until they are ready to shoot. Attempting this with Bow Hunter's Syndrome lands them in the emergency room, and sometimes gets the actual attention of a doctor, who will occasionally figure out what is going on, possibly provide treatment, and if they've gone to that much bother, almost certainly publish a report mentioning said venery.

That case study might refer to this condition as Rotational Vertebral Artery Compression Syndrome. The vertebral arteries are the main blood supply to the brain stem, one of those body parts humans can't do without, not even for a few seconds. There is one vertebral artery on each side of your spine, running up through tunnels in your cervical vertebrae, the spine bones in your neck. When a healthy person moves their head, each artery has enough space to wiggle in these tunnel, so that it doesn't get compressed, kinked, stretched, or otherwise lose flow. Rotational Vertebral Artery Compression Syndrome means that rotating your head pinches your vertebral arteries, usually at the joint between the two uppermost vertebrae, reducing or eliminating flow of blood to your brain stem. The various other names this condition goes by mostly include the word "insufficiency" referring to the shortage of oxygen in your brain stem, which is what causes the actual symptoms.

About those symptoms: tinnitus (a buzzing sometimes in both ears, sometimes just in my left), vertigo, dizziness, mental fatigue, and faintness, increased gradually over several years during which I did not notice that head position had anything to do with it. I would consistently feel dizzy while shopping in the grocery store, not noticing any connection to turning my head from side to side trying to find unsweetened pickles. Long after others had recovered from some cold, I would have lingering vertigo and a sense of mental fog. I gave up my habit of sleeping on my belly, which allowed me to fall asleep very quickly, but from which I eventually decided I was waking feeling tired and unwell. My first autumn in Wisconsin I wondered if I was wrapping my scarf too tight because I would start to feel like I was going to faint every time I tried to back my car out of the driveway. Attempts to discuss all of this with doctors were frequent but unproductive.

The symptoms became debilitating only after an accidental blow to the top of my spine that winter. I was diagnosed with a concussion, and because most of the symptoms of Bow Hunter's Syndrome are consistent with a concussion, I looked no further. Most of a year later, having recovered only slightly, I was a passenger in my moving van (on the way to California) when it turned over on the highway, flexing my neck too far forward. After that, the observation that the position of my neck had both immediate and lingering effects on my symptoms became unavoidable.

The blaring clue to my addled brain came from my new neighbors' fig tree. Having permission to pick, I was straining to reach a fig well above my head. I looked up, turned my head to the side, stretched my arm, and collapsed. My eyeballs were shaking, my vision went black, and the tinnitus became unimaginably loud, louder than the human ear could withstand if real sound was involved. I was breathing, but felt the urgent need to come up for air. I brought my head back to neutral and the screeching tsunami gradually receded, light started to return, the spinning slowed. I had survived my first "Bow Hunter's Stroke." I put that phrase in quotes because unlike a real stroke, no tissue damage showed on scans afterwards. My brain stem hadn't lost living tissue, just power. The medical jargon for such an event is a transient ischemic attack. My doctors were no more than puzzled.

In the fifteen months since then, I went through thousands of abstracts, scores of full scientific papers, two insurance companies, four primary care providers,  three neurologists and a wide variety of other specialists, countless imaging studies, three interventions including a poorly planned major surgery that nearly killed me right there on the table, and months of recovery before I could considered myself past Bow Hunter's Syndrome. All worth it. I'll dig around in the key pieces of that in Bow Hunter's Syndrome Part 3: Wresting diagnosis and treatment from the jaws of modern medicine.

Bow Hunter's Syndrome Part 1: A Survivors' Support Group of One

My doctor looked like I had just puked in his shoes, but eventually took the papers I was holding out to him. This was a better response than I had expected, but still I could tell he would not look at them. I switched doctors, and with the next one emailed him the papers after our appointment. He wrote the referral I needed but declined to see me for months thereafter, going so far as to change an in-person appointment for a possible broken wrist to a phone appointment, after I was already in his parking lot.

The only thing a doctor likes less than a patient walking in with an obscure self-diagnosis they found on the internet is when the patient brings the medical literature about that diagnosis for the doctor to read. I knew this, but also that my doctors had not heard of Rotational Vertebral Artery Compression Syndrome, and that I needed treatment for it. Adding insult to injury, my obscure self-diagnosis would eventually be unquestionably confirmed and successfully treated.

This same condition goes by multiple names in the medical literature including Rotational Vertebral Artery Compression Syndrome, Positional VertebrobasilarIschemia, Positional Vertebrobasilar Insufficiency, and Bow Hunter's Syndrome. This last name is the least descriptive, but also the shortest and least jargony, so I tend to use it.

Bow Hunter's Syndrome is quite rarely diagnosed. There are perhaps a few hundred cases documented in the medical literature, total, globally. This could mean that it is a rarely occurring condition, but given the lengths I had to go to get it diagnosed, the severity of those cases that are documented, and the peculiar circumstances that allowed me to reach diagnosis, I suspect rather that it is an only slight uncommon condition which generally goes undiagnosed. As a neurological condition not caused by any neurological defect, Bow Hunter's Syndrome tends to fall through the cracks.

I was able to diagnose my own case because I have a Ph.D. in biology, loquacious physicians as parents, and extensive experience finding obscure scientific literature outside my field of expertise. I knew I had something, as most patients do, but I also knew how to search the scientific literature for conditions associated with terms like "cervical vertigo," "rotational stenosis," "positional tinnitus," and "nystagmus,"  then skim through the results, read those papers that seemed most relevant, follow citations back and forth, improve my search terms, and so on to a diagnosis. What I had to figure out was how to then navigate Earth's most wasteful medical system (USA! USA!) to arrive at an official diagnosis and ultimately treatment, and I had to do all of this while suffering the symptoms of Bow Hunter's Syndrome (including vertigo, ringing in my ears, dizziness, intermittently blurred vision, and faintness).

The good news is that I am largely recovered from it, and from the surgery that resolved it.

The bad news is that I will be posting here a series of short essays with the hope of making this process slightly easier for other sufferers of Bow Hunter's Syndrome, a purpose which I do hereby gleefully acknowledge will horrify all medical professionals that happen upon this. There are, so far as I can tell, no popular accounts, no support groups, no blog posts written for the uninitiated, describing what Bow Hunter's Syndrome is, what it feels like, how to approach being a patient with it. Perhaps soon more patients will be wobbling into their doctors' offices mumbling about the blood supply to their brain stem and a condition the doctor has never heard of. One can hope.

Next: Bow Hunter's Syndrome Part 2: What, with a dab of why

Then: Bow Hunter's Syndrome Part 3: Wresting diagnosis and treatment from the jaws of modern medicine