Living with
a handful of chronic illnesses means living a life of adventure; I never know
what the day will bring! A purple spot on my shin could be a simple bruise, the
beginnings of a Crohn’s flare, or something sinister such as an adverse
reaction to a medication. Trying to
solve the mystery can feel like I’m in the movie “National Treasure”,
constantly on the run, chasing clues hoping the next one will be the last.
The Eyes Have It
One of my most
puzzling chases involves the health of my eyes. It was a case of papilledema (swollen
optic nerve) that led to my brain tumor diagnosis some 23 years ago. Changes in
the tumor led to a craniotomy, and post-op monitoring ultimately led to a
diagnosis of Neurofibromatosis 1 (NF1). Because of all the whoop-dee-doo with my
eyes, I see an ophthalmologist every year for visual field (VF) testing. A
super fun test where you sit in front of a white dome and with one eye covered,
focus on a target at the center and press a button every time a little dot of
light appears in the periphery.
Doctor 1
Five years
ago, my ophthalmologist noticed a “progression” on my
left optic nerve (compared to previous tests) and kicked me up the food chain to a
neuro-ophthalmologist for a second opinion; her concern? Optic nerve glioma (a benign brain tumor that grows on the
nerves that carry vision from the eyes to the brain; they are found in
approximately one in five children with NF1.
Doctor 2
Although he
was pleasant enough, he blew through the testing super quick. He concluded the
abnormality to be scar tissue from years of inflammation and not a glioma. He
asked me to come back in six months.
Six months
later and the VF were stable, he told me I didn’t need his services and could
follow with Doctor 1 in a year. I told him I was under the impression Doctor 1
was signing off. He said he would put it all in his note to her. I drove home
in a cloud of relief and frustration.
Doctor 3
A year goes
by and as fate would have it, Doctor 1 had retired, cue Doctor 3. He expressed the
same concerns regarding the glioma possibility. He gave me the “repeat in six
months” order. Six months go by, tests are repeated, results are stable but concern
loomed; he suggested I speak with whoever I see for NF to find out what they
would recommend. Fair enough.
Doctor 4
The appointment
for the neurologist didn’t go as I had hoped. Because I’m an adult with a “mild
case” of NF (their words) they scheduled me to see a PA and not the
neurologist. The PA hadn’t even viewed my test results prior to my appointment.
Even though I felt she was totally unprepared for my visit, I asked anyway –
“Does the clinic work closely with any ophthalmologists that are well versed in
NF gliomas?” Answer-“No one in particular.” UGH!
Back to Doctor 3
Ah my optic
nerve, stable yet still peculiar! He said he’d feel better if I saw a neuro-ophthalmologist.
I reminded him Doctor 2 doesn’t want me and the neurologist was a dead end. He
agreed and referred me to The Wilmer Eye Clinic at Hopkins.
It was at
this point, I froze. I worked myself into a nice lather, what if I needed surgery? What
if I lose my sight? Then I got mad at NF; for such a “mild case” you sure are a
big pain in the arse! I hung the referral slip on the bulletin board above my desk;
I’d look at it every day and tell myself, “I’ll call tomorrow.” Seven months
later, I made the call.
Doctor 5
Expectations
exceeded! She read my chart prior to my visit; she even viewed my old MRI
films. And she knew all about NF. She ordered an MRI of my optic nerve, said no
rush and to come back to see her in 1 year.
I asked if I
should still see Doctor 3. She replied, “I’m not trying to steal you away but,
this is what I do.” I realize now how
peculiar my question must have seemed but she had no idea of the road I had
traveled to find her!
Pay Dirt
Five years
and five doctors later, I found a great one and I know I am in capable hands. I
almost gave up but my health is my job, my mission. And while I still don’t
know if the abnormality on my left optic nerve is a glioma or not, I can
honestly say I don’t dwell on it. Sometimes it is less about finding answers
and more about finding a doctor-patient relationship that clicks.
