Search This Blog

Sunday, August 29, 2010

Complex Auditory Aura

Thank you to my online friends for enlightening me on what I likely experienced more than a week ago. I have done a lot of reading about what is called a COMPLEX AUDITORY AURA and—though every case is different—I would guess this is what I experienced. Apparently it happens more frequently with trained musicians. So far it has only happened that one time with me.

I have had several days to digest the experience and I guess what really bothers me is my brain perceived something that was not there. We like to think the world is out there and what we pick up with seeing, hearing, touching, tasting and smelling pretty much sums it up for us. The brain is like Grand Central Station: all the senses are accounted for, computed and a clear mental image emerges of what is actually OUT THERE.

But what about the times when you are clearly sensing something—for an extended period of time—and yet you know this cannot be? As I wrote in my last blog, this was not like a tune stuck in my head nor was it music I was imagining. This was music I could hear, music that was playing live in the other room. It played on for over an hour. Thankfully, it was the sound of my wife's classical guitar and not a brass band.

I casually mentioned this to my ENT surgeon the other day (who performed half of both my brain surgeries). My surgeon also happens to be my next-door neighbor so there are plenty of opportunities to run into one another. He thought my experience was interesting and he mentioned cases where people have come to him hearing voices, wondering if they have a computer chip in their head.

"A computer chip IN their head?" I asked. "The voices are INside their head?"

"Yes, like a voice inside their head telling them things."

"My experience was a sound OUTside of me. It was in the other room and I had to go find it."

"That's less common," my surgeon said.

I've heard that before.

There have been a few other symptoms to report, mostly a continuation of what I have written before: ear ringing, occasional brain shocks (mostly under control with medication), bouts of disorientation relating to overstimulation with sounds and colors (grocery store = evil), and strange moments when one or both of my legs simply do not respond when I am walking. For the last symptom, it is like I have to say, "Hey, leg. Move it!" And then my leg responds, "Huh? Oh, sorry."

I have another two weeks until I will return to playing at least some oboe again. This summer—due to my wavering condition—I had to sit out what is usually the highlight of my musical year: The Cabrillo Festival of Contemporary Music in Santa Cruz, California. Last summer I experienced a few moments of dimmed vision and headaches during concerts that I dismissed as either jet lag or too many bear claws from the breakfast crew. The espresso in Santa Cruz is also lethal, so I assumed whatever was going on in my head was not anything to worry about. Let's face it: just like Monty Python's "Spanish Inquisition," no one expects a brain tumor.

To all my colleagues at Cabrillo, thank you for the sweet card! I was following all of you through Facebook and I was reading all the articles and reviews. You rock! And I'll be back. It killed me to miss the best year ever, but then again every year at Cabrillo seems that way, doesn't it?

Tuesday, August 17, 2010

Can't You Hear It?

George Carlin once skewered the subtle differences between "sick" and "don't feel well." When you are "sick" people leap to action and surgeons come in on their day off to operate. When you "don't feel well" you are simply a pain to everyone around you.

What I have been experiencing these past few months is the latter.

Between my occasional vision changes, pinpricks of light, brain shocks, light sensitivity, disorientation episodes and aversion to avian annoyances I am the walking poster boy of "don't feel well." I exude a general malaise but no one really knows what to do with me. By the time I see a doctor my symptoms have gone away and I am advised to keep resting, to keep healing and to try to stay the course.

Now there is something new. Again. Another strange occurrence to add to the list. I am hoping for comments because—for once—Google turns up nothing. Here's what happened:

MJ practices her classical guitar every afternoon. I like this instrument and often I will plant myself on the couch in the next room on purpose, writing while she plays. It is a lovely sound. Yesterday, when she was done, we sat together so we could talk about the rest of the day.

"Do you hear that?" I asked her suddenly.

"Hear what?" she replied.

"Someone is still playing guitar. Come on, can't you hear that?"

"Ale, I'm RIGHT HERE. How can you hear guitar music? We're deep in the woods."

I stood and walked to the doorway where I heard the music. "Can't you hear it?"


I was frustrated. I stood in slightly different spots, seeing if it was the wind or something else. "No, it's definitely a guitar," I said. "It's you playing, but softly. You're not playing guitar right now?"

She gave me a confused look, turing her palms up slightly and looking into her empty lap.

I asked, "There's not a recording going? Did you record yourself and it's still playing?"


"I can't believe you can't hear this. Are you sure you're not playing right now?"

"Ale . . ."

The guitar music played on, softly and peacefully. It was not the same thing as when a tune gets stuck in your head. This was different. The sound was outside of me, playing somewhere. I wanted to find it.

MJ said, "Why don't we sit on the porch for a bit? You can relax."

We went out on the porch. It was windy and loud but the temperature was nice. I sat and closed my eyes. The guitar music resumed.

"You don't hear that?"


"Oh come on. It's just off in the distance. A guitar."

She looked up from her book. "I promise you I don't hear it."


I sat up and examined the sky. A ray of sunlight caught my eye. Instinctively, I shut my eyes because lately I have been more sensitive to light.

Ping! A plucked guitar chord rang very loudly as I closed my eyes. This surprised me, so I blinked my eyes three times in a row as I tried to clear my head. Ping! Ping! Ping! Three more guitar chords, all the same.

I sat back again and looked at my wife. "That was weird."


"I think it's the light. Or some of my facial muscles. When I blink, I hear a chord."

I tried it some more. Blink, blink, blink, blink. ("Ping! Ping! Ping! Ping!") Interesting.

For the next hour I tried to fill my head with something else so I worked through the Wall Street Journal acrostic puzzle. The music stopped at some point but I still shake my head at how the whole incident was so strange. I was not using abstract thought to conjure music I had once heard. I do that all the time. This music was actually sounding somewhere and I was hearing it, although I know this is impossible.

Add this to the laundry list of other strange symptoms that come and go. Maybe somewhere out there George Carlin is strumming a guitar, laughing at yet another person who isn't quite "sick" but just "doesn't feel well."

Thursday, August 5, 2010

New Tests

Yesterday was quite a day. It was my first complete round of tests in two months. The very, very good news is there is no sign of tumor regrowth along my optic nerves. This is the most likely place for it to come back so most of the time they were studying my eyes.

I still have some serious symptoms—and the neurologist recorded all of them in great detail—but I am told they are more likely related to an ongoing recovery from the two brain surgeries last fall and not another regrowth of the craniopharyngioma tumor.

"But I read something on the Internet," I told my neuro-ophthalmologist.

"Oh?" he asked, staring into me like the little RCA dog.

"Yes," I said. "In some cases a craniopharyngioma can metasta ... metisasso ... uh."


"Yeah. In some cases the tumor can ... what you said ... to other parts of the brain and regrow and expand there. Could my symptoms of brain shocks, disorientation and tingly scalp be symptoms of that?"

"I suppose it's possible, but very unlikely," he said. "You would be having other symptoms too. And don't forget craniopharyngiomas tend to regrow very slowly anyway. An MRI in a few more weeks will spot any signs of a metastatic tumor."

I proceeded to tell him about my last experience in an MRI machine: complete torture.

He offered, "I can prescribe Atavan."


"It's a calming drug that will relax you for the experience. But only if you need it."


He asked me some questions about my life and my career.

"How's your composing going?"

"A review last month compared me to Andy Warhol. I think that's good."

"Oboe playing? Still feel like you're healing every day or have you reached a plateau?"

I moved my hand between us like a flatline. "Plateau." For some reason I spoke the word with a French accent.

He checked a box. I hate it when they do that. It doesn't capture nuance. Did he check "French?"

I added, "There's only so much I can give every day. If I perform in the morning, I'm useless for the remainder of the day. If I have a performance at night, I have to convalesce all day to prepare. It's been this way for months and I worry this is as good as I'm going to get."

"It will get better," he said. "Keep resting."

"Oh, I'm resting. I watched all of 'The Bachelorette.' That's how 'resting' I am."

Just then a fire alarm went off. "Code red! Code red!" a voice spoke over the intercom. He poked his head outside and I saw lights flashing up and down the hallway from the emergency units.

He came back inside and sat.

"Don't worry, that's nothing," he said.

Monday, August 2, 2010

The Thousand Points of Light

This morning I arose at my usual time, 5:27am. I don't set an alarm but I always wake within three or four minutes of this time. I stared at the ceiling and watched the pinpricks of light blink on and off. They were like stationary fireflies, single points of light blinking here and there. It was peaceful. Stargazing. I drifted off for a moment dreaming of how much I like the ceiling of the bedroom at our cottage, how we had especially put the blinking lights in the ceiling which sparkle during the wee hours of the morning . . .

I bolted awake. What lights? In the ceiling? There are no blinking lights up there.

I opened my eyes wide and stared into the dark ceiling.

Blink. Blip. Sparkle. Blip. Blink.

I closed one eye, then the other (something I do several times per day). Both eyes could "see" different pinpricks of light which moved when I switched from one eye to the next. This confirmed the lights were not actually up there and were not a reflection of something outside.

When my brain shocks were at their worst I experienced a visual disturbance I dubbed my "electric butterflies." They sparkled inside my eyes as I was sucked into the vortices that detonated the electric impulses in my head. This (in part) led a neurologist to prescribe a medication used in the treatment of Epilepsy. The brain shocks have mostly gone away (perhaps due to the medication) but from time to time I still get my electric butterflies.

This is the first time I have seen pinpoints of light in the distance. My neuro-ophthalmologist (who I am seeing on Wednesday for extensive tests) wants me to take note of every vision change. The craniopharyngioma tumor had been wedged between my optic nerves, so any little change could mean the tumor is making a move again.

The complicated part is I am now on the wrong side of forty, when every person on the planet begins to experience . . . vision changes. Hence, every little thing that panics me could simply be what every adult over forty experiences.

"Oh yeah, I remember when that happened," is a common refrain from friends when I explain my most recent vision changes, usually in a cold sweat.

But I must be diligent about taking notes as I continue to crash-land into middle age. With this morning's blinking lights on the ceiling, I could hear a comedian's voice in my head describing them. Much like the Stay Puft Marshmallow Man from "Ghostbusters," once I have made the mental association, it is irrevocable. As I sat up to rise from bed, all I could hear was Dana Carvey doing his memorable SNL impression of the first George Bush: "The thousand points of light, the thousand points of light, the thousand points of light . . ."