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