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| The author, probably a horse |
Doctors are trained, when faced with an unusual set of
symptoms, to diagnose the patient as having an unusual presentation of a common
problem, rather than a rare disease presenting in its normal way. As my pediatrician-mother
likes to put it, "When you hear hoof beats, don't think of a zebra, it's
probably a horse." This advice likely serves many doctors well. That
odd looking rash on the baby's bum really is more likely to be an atypical
diaper rash than amoebic tushitis.
The problem with this policy is those patient who truly are
zebras. We are inevitably mistaken for, and treated as, horses. Before I knew of Bow Hunter's Syndrome, I saw two primary care physicians at the same office
about my vertigo-dizziness- tinnitus-faintness-etc. symptoms. The first was
sure I was depressed, asked if I had "heard of psychosomatic," and
walked out when I insisted I was a zebra. The second, two weeks later, told me
I was terribly allergic to my new home and would have to move out of town,
closer to the sea, immediately. Shortly thereafter I had my first, and worst, "Bow Hunter's Stroke."
Luckily, none of the doctors at the clinic were free to see
me that day, and I was shunted to their nurse practitioner. Nurse-practitioners,
unlike M.D.s, have listening skills. I described the whole thing to her, and she
immediately saw my stripes. I was no horse. She sent me for an ultrasound of my
carotid arteries (to check if the main blood supply to my head was obstructed)
which gave me a vital clue. While checking the carotid arteries, the technologist
always did the vertebral arteries too. While both looked normal on the
ultrasound (which was taken with my head in neutral position) this was my first
inkling that a blockage of vertebral arteries was even possible.
I'm not going to describe in detail the extraordinarily stressful process of
literature searching, doctor-switching, insurance switching, specialist bouncing,
bureaucracy fighting, scans, rescans, etc. In short, I found Rotational Vertebral Artery Compression
Syndrome in the literature, was struck by how exactly the case studies approximated
me, and spent a year actively working toward official diagnosis and treatment,
culminating in a near-fatal but successful surgery. There are several key
lessons I learned along the way that I want to share with other putative
sufferers of Bow-Hunter's Syndrome:
1. No doctor is going to bother to manage your care, but you
have to let them pretend they are going to manage your care. Managing
your own care is a full time job you have to do. Keep lists. Call every day to find out if
a slot has opened up, remind people of things they already know, catch their
errors, force them to communicate with you and each other, advocate for yourself. This difficult
process was somewhat ameliorated by the fact that I am a white male with a greying beard. Bring an old white man with you, there are plenty of
us around.
2. Bow Hunter's Syndrome can only be definitively diagnosed by
comparing blood flow through your vertebral arteries when you head is in a neutral
position to when it is in a position that brings on your symptoms. Make sure
your doctor is explicit about this need in ordering imaging. Medical
technologists are often not willing to take imaging with your head turned. They
are trained to do everything in a neutral position, and if you explain why it
has to be done with your head turned, they will worry you are going to pass out
in their expensive machine or onto their legally-liable floor. Call ahead
several days before your x-ray, CT, MRI, whatever, and insist on talking with
the technologist to be sure it will be done as ordered. They will tell you they
need to consult with the radiologist, who will want to talk to your doctor, who
won't be available, etc.
On the day of your scan, if the technologist won't unequivocally confirm that
your scan will be done both straight and with your head turned far enough to
induce symptoms, you must refuse to get in their machine. Stand there shivering
in the buttless gown and calmly insist that they do the scan the way your
doctor ordered it. If they tell you their MRI machine doesn't have space for
you to turn your head, tell them they have to put on the coil after your head
is already turned. If they insist the condition you are describing doesn't exist, whip out a published description. Walk out if you have to. Failing to do this once delayed my
care by four months and cost me several thousand dollars because once the scan
was done wrong, my insurance wouldn't approve the same scan again. I had to change
to more expensive insurance and doctors, start the process from scratch, and learn
to insist.
3. The ultimate confirmation of Bow-Hunter's Syndrome comes
from fluoroscopic angiography with arterial catheterization. This means they
take video of x-ray dye moving through your vertebral arteries, with your head
in various positions. The dye is delivered through a small tube that is
inserted through an incision into your thigh and wormed up as far as the back
of your brain. I found the moments when they were squirting dye into my brain
to be the most painful of the entire experience, despite the sedation and pain
killers. However after this procedure no one questioned my self-diagnosis.
4. The most common surgery for Bow Hunter's Syndrome is called
decompression. This means they made more space around one of my vertebral arteries
(one unobstructed vertebral artery is generally enough to keep your brain stem ticking)
by removing a piece of the bone that wraps around it on the side of my first
cervical vertebra. Such decompressions are done for a variety of syndromes that
are more common than Bow Hunter's Syndrome, and it is this fact that very
nearly killed me.
Surgeons are very busy people, and generally make physicians
look like excellent listeners. My surgeon performs a fair number of decompressions, but
mine was his first for Bow Hunter's Syndrome. His protocol for this surgery starts
with having another surgeon carve a path to the bone. Then he takes over and turns
the patient's head for a clearer view of his work grinding away bone without damaging
other important bits. You know, and I know, and he knew, that turning my head cut
off the blood supply to my brainstem. He did it anyway. That was the next step
in his protocol, he had not had time to think this through, and I had failed
to manage my own care on this point. Several minutes later, when they checked, no blood was flowing through my vertebral
arteries. He guessed it was measurement
error, and had another machine sent. Still no blood flow. They righted
my head, glued me up in a hurry, and went to scare the life out of my poor wife.
Luckily, they frappéd jargon with indirectness and she didn't understand what
had happened until after it was clear that I hadn't been killed. My brain stem responded
well to the return of blood and I was out of the hospital the next morning.
Recovery to the point of feeling better than before surgery took me about three
months.
5. Finally, as this is now long, they insisted I would
need opioids after my spine surgery. I did not. Accept them if you need to,
don't assume that you will need to.
I'm happy to be your support group of one if you're wondering if this
diagnosis is yours. I'm a Ph.D. though, not an M.D., so be aware that I can
only offer one zebra's perspective.
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