January 5th would mark the beginning of 8 doctor’s appointments in eight business days (six for brain stuff, two for IT band issues). Now, that may not seem that big of a deal except that two of them took up the entire day. The doctors would all call and say hey we had an opening tomorrow, can you make it etc? Each time thanks to the generosity of my friends I would be able to find a ride to and from there. It would be a week full of interruptions for daily life but those interruption would provide me all the information I needed to make a decision by January 14th to decide how to best proceed. I typically make New Year’s resolutions but in 2011 I made one for 2012: to receive my first paycheck of the year before having my maximum out of pocket insurance payment.
The first appointment was an eight hour neuropsychological test. It was filled with solving puzzles like finding what was missing in a picture, typically something as small as a one stripe on a road, or one picket on a fence. I had to spell things, spell them backwards, repeat things, repeat them backwards. This continued with more items like a personality exam, closing my eyes and seeing if I felt being lightly touched, touching my finger to my nose while having my eyes closed, recognizing things on the periphery of my vision while looking straight forward, finding numbers in the middle of rows letters as fast as I could, defining words, saying as many words as I could think of that began with a certain letter, an IQ test etc.
The tester and I didn’t click from the beginning and it continued to show throughout the day. I was actually on the phone when she took me out of the lobby ten minutes before I was scheduled to go in. Arguing with my insurance about the fact that neurosurgeon who did the biopsy was not on the insurance and that therefore they didn’t want me to do follow up with him. They would pay it initially since it had been through the ER but follow up was a different story. This was at best illogical in my mind, that I should follow up with someone besides the guy who had actually been in my brain. Rudely to the lady I would be spending the next eight hours with, I didn’t cut the conversation off but finished it while she was setting things up in her office. I didn’t even get a courtesy smile when I made a cancer joke after finally getting off the phone (with a minute to spare from our actual appointment time). During the entire time, I tried to figure out each exercise to figure out what it was trying to test for. Part of the reason I’d been Valedictorian and graduated suma cum laude was because sometimes getting a good grade was as much about figuring out the test as it was about knowing the info itself. A couple of times throughout the day, she gently (but clearly annoyed) nudged me to just take these tests without any extra effort into that. Being a psychology major and having some knowledge of this stuff, I knew that some of it was open to interpretation and that when the psychologists and the patient don’t click it can skew results. Still, she seemed a consummate professional so I trusted that it would be fine. Eight hours later I left and was told the results would be forwarded to my neurologist and neurosurgeon. I could also have a follow up with the psychologist as well. That follow up would be an hour long and would cost me “just the office co-pay.” For that small of an amount after all else that was being billed, it seemed a bargain.
The MRI was not too long after that (still no growth), EEG was still normal, met with two and some three of almost every profession (neurologist, oncologist, neurosurgeons, neuropsychologist). Each time I took all the records that were immediately done and left a notice that I wanted everything sent to me as soon as it was ready. My initial neurologist receptionist seemed annoyed by that request and said that most patients don’t ever ask for that. Another receptionist was also frustrated with how insistent I was about moving things up and said she’d never seen a patient who tried to have so many appointments so quickly.
Each doctor I posed the same question to. The options I asked them to consider were 1) do surgery now or 2) monitor and if when it grows do surgery then. The options to me included a 3rd… do nothing and if when it killed me, it killed me. I didn’t propose the 3rd option to them just the first two and asked “If this was your child or your significant other, what would you recommend?” Some of these doctors took it in stride, some were a little taken back, and one would not answer it phrased that way, he only wanted to think about it in regards to my case (that was my last visit to him). I needed them dealing with a human being not a disease and then recommend something based on that.
This was all so bizarre. I was spending many of life’s resources, time, money, emotions on something I couldn’t remember. This was all due to a seizure I had which was a blank in my mind. I have no memory of this, the symptom that was causing all this hassle was something I could not recall and had I been slipped a sleeping pill and woken up with an EMT over me telling me this, I’d know no better. And over that I was supposed to consider brain surgery?
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