When Big City Medicine Feels More Like Big Shitty Medicine

My eyes are special, well at least my left optic nerve is. Over 20 years ago, I had an episode of papilledema (inflammation of the optic nerve at the rear part of the eye), that led to the discovery of my brain tumor, and then to a suspicion of NF1. Because of this history, I have an annual eye exam with a neuro-ophthalmologist that includes visual fields testing and the occasional MRI.

I’ve written about my eyes (The Medical Mystery Tour) and in that post, I wrote about my previous eye doctor telling me I needed more care than he could provide, I needed a Neuro-ophthalmologist. He kicked me up the food chain to the Big City Medicine doctors at Hopkins. Last year my experience was fabulous. Well, what a difference a year makes! The following is a recant of my less than stellar experience with The Johns Hopkins Wilmer Eye Institute.

Creating the Illusion of Efficiency

I made the appointment a few months ago. A week prior, I received a text message to confirm. A few days later, I received an e-mail instructing me to log in to the patient portal and complete my check-in. Damn! Sure seemed as if they were ready for me! Like a good patient I complied, lest they follow through on their threats of taking my first-born or a vital organ if I failed to complete my patient questionnaire, cancelled in less than 24 hours, or god forbid was a ‘No-Show’.

Hurry Up and Wait

I breezed in at 11:18 for an 11:20 appointment. I thought I had given my self oodles of time but was stymied by an accident on I-97, curses! I apologized for not being there 10 minutes early as instructed (I truly hate being late.) The receptionist smiled, said, “No worries, they’ll call you when they’re ready.” I found a seat in the waiting room at exactly 11:20, whew!

Thirty minutes ticked by before the tech came to get me for the pre-exam. I wondered if I was being punished for being exactly on time. Cover your left eye; cover your right eye, blah, blah, blah! When we finished, I was told to have a seat in the dreaded ‘second waiting area.’ Eventually, another tech came to get me for the visual fields test, after which she dilated my eyes and sent me back to purgatory.

…And Wait

The waiting area saw a steady stream of patients in and out. Every time a scrub clad employee walked in, my hopes were dashed as fast as they had been raised. No one ever called my name. And not one staff member offered any explanation as to why the delay with my doctor. I admit I didn’t ask anyone either. My eyes were dilated, I could barely fucking see, my day was shot; resistance at this point was futile.

As the TV pumped out a steady stream of mind numbing HGTV, an older couple bickered over which career came first for the Property Brothers. The wife insisted they are actors. The husband was fascinated by his wife’s assertion, could it be true they were actors that became real estate agents? He decided his wife was wrong, the brothers had to be agents first and became actors later. Either way, the wife concluded, “it’s all fake garbage."

Two hours of remodeling mayhem later, my doctor finally popped her head into the waiting area looking for me. She thanked me for my patience, said she gotten behind this morning. I told her, “Being patient doesn’t mean I’m not irritated.” I explained having your eyes dilated kind of screws your whole day, I wasn’t going anywhere.

Everything Suffers

My eyes were examined, I was told my preliminary testing indicated all was stable, and I could come back in a year. I was done in less than ten minutes. I got the sense my doctor felt more defeated by the delay than I did, almost as if she wasn’t fully present with me. How could she have been? She was almost 2 hours behind schedule! I suffered, my care suffered, my doctor suffered, and every patient of hers after the event that balled everything up suffered. How is this quality care?

Health Care Is Broken

At every turn, preventative medicine is shoved down our throats, skin cancer screenings, glaucoma screenings, colonoscopies, dental cleanings and x-rays, etc. The message is: “Get it checked out before it’s too late!” Well, that’s all good in theory but the reality is; doctor’s appointments are a huge investment of time, energy, and money. I will gladly spend two and half hours on my health, but when I know an appointment (on a good day) could have been completed in half the time, I get cranky.

My neuro-ophthalmologist isn’t my only doctor. I go through this kind of crap at least once a month with other healthcare providers and you know what, I’m tapped out! I’m tempted to say fuck it and never go back, unless I start going blind. But who am I kidding; I’ll be back next year because my other options are not worth it.

I hear all the time about choice. Healthcare systems claim you can go off where ever you want for care. Well, within reason. Neuro-ophthalmologist doctors are not a dime a dozen, the closest to me is 40 minutes away. I could choose to go out of network but I’d pay a supreme premium; I can barely afford to stay in network as it is (the price tag for my optic odyssey was $580.00; my patient responsibility is $295.74!)

Inquiring Minds

I’ve chilled out since this chain of events yet I still have so many questions! Where in the morning did my doctor get backed up? Did one of her patients have a medical emergency? Could her office have called/texted me to let me know of the delay, to offer a chance to reschedule? I mean, they texted me about every other damn thing. I wonder what my reaction would have been if, once I arrived, they told me the doctor was two hours behind? Would I have stayed? Probably not.

Is there even a protocol for such a massive delay? I get it, shit happens. No one can predict how their day will unfold. For a doctor’s office, I feel there should be some kind of contingency plan. I wonder if the front of the house had any idea of the mess going on in the back of the house with my doctor. I almost hope they were clueless; at least there would be an excuse for their silence. Rather than the alternative which is, they just don’t give a shit.

The Medical Mystery Tour

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.