In my head: A Singer-Songwriter’s Experience with Superior Semicircular Canal Dehiscence

So it was one year ago this December that I found out.

I want to describe what it’s like. What it’s like to hear your own voice, amplified in your own head. Kind of like a bad monitor mix. Too much me. Like it’s time for a new sound guy. Pro-audio metaphors seem to work best.

Turns out, it’s not just neurosis, I actually AM “in my head too much.”
I actually DO have a kind of “hole in my head…”

More than 5 years ago, after getting over a monster cold – head stuffed up like it was going to explode, accompanied by all the usual symptoms, as well as my signature irritability (I now recognize that my irritability mostly CAUSES my ill health, not the other way around…but, I digress), I was left with that stuffed-head feeling. It was more like my left ear was still clogged, like it sometimes feels for a while after a plane flight, or after swimming. It was – well, irritating to say the least (hmmm…a permanent symptom).

I continued to have this feeling for years, saw several ENT specialists, was checked for earwax (none), tested for hearing loss (also none) and told “well, at least your ears are not ringing” (some comfort, but no relief). As I grew used to this clogged feeling, I realized there were other, less easy to describe sensations. I especially noticed these when singing. It sounded like my headphone monitors were out of whack; there was “too much me” in the mix. I could hear my voice in my head really loudly, and certain frequencies and tones created a sort of internal feedback, from a mild buzzing in my head to an extreme sort of jack-hammering and vibration against the inside of my skull, which may or may not be accompanied by dizziness. Performing certain vocal warm-ups while driving became almost dangerous.

My 2nd to last ENT (ear nose and throat Doc) was the most thorough up to that point, hearing out all my varied complaints and using a variety of low- and hi-tech diagnostic methods to check me for possible inner ear disturbances. He spun me around in circles blindfolded as if we were in a game of pin-the-tail-on-the-donkey, and then let me walk in a “straight” line as I veered off into the wall. He also strapped on the high-tech goggles and conducted videonystagmography, a series of tests to determine the cause of dizziness or balance disorders. All of this led to this medical conclusion – and I quote – “you may or may not have a problem in your inner ear, but either way, I cannot prevent your fate.” He actually repeated that line (in case my hearing WAS affected?) One of the most mystifying things I’d ever heard from a western medical doctor!

One day while scrolling through my Facebook news feed, I noticed a link shared by a fellow singer-songwriter (one that I am “friends” with on FB but actually have never met and don’t know at all – Tracy Grammer. Although I look forward to opening for her at The Uncommon Coffeehouse in Framingham this week, January 11 2013!) Her post was something like “This poor guy – I would hate this” and contained a link to an article describing the symptoms of something called “Superior Canal Dehiscence.” The condition caused, among other things, autophony (according to Wikipedia, “the unusually loud hearing of a person’s own voice, breathing or other self-generated sounds.” He could hear his eyeballs move, for instance. Well, doesn’t everybody?

Me, I also hear myself chewing. I have to cup my hand over my ear, old lady style, “eh?” when having conversation in a loud room or if I’m also eating. I hear my heart beat. When working out it can get pretty loud, and sometimes the whole scene in front of me jumps up down like a hand-held camera in documentary footage or reality TV.

I left a comment on the Facebook link, thankful for the help in finally identifying what was going on with me.

I’ve since read lots on this condition, but before I read this article on Facebook I had to wonder if I was going mad or if aliens had indeed surgically implanted something in my head.  So I called the office of the doctor who performed surgery on my vocal nodules in 1998 (Dr. Steven Zeitels, who recently operated on pop superstar Adele). It was time for a no-nonsense recommendation for the best medical opinion I could find. I got a referral to Dr. Jennifer Smullen, an otologist at Mass Eye and Ear. I told her, I think I know what’s wrong with me and can we just skip straight to the CT-scan to confirm it? The first thing she did was strike a giant tuning fork and stick it on my forehead. “Where do you hear this?” I pointed to my left ear. “Well, that tells me a lot.” She did skip fairly quickly to the scan (a cone beam, to minimize exposure and just examine that narrow area. Which of course left me paranoid that maybe I DID have a brain tumor somewhere that the limited range of the scan would not pick up… but I’m not dead yet, so I guess I’m ok). When she came back with the results she said, “Congratulations – you’re a genius. You diagnosed yourself.” Proud of myself I then thought, ‘oh shit. Now what?’

It turns out the only way to correct this is surgery (read: cut into scalp, lift brain, plug or patch hole, set brain back down, sew up hole in scalp…) Oh yeah, and there is a 1 in 10 risk of total hearing loss in that ear. Wait, what? When I research SCDS online and read about others’ experiences, I am frankly shocked by how many people casually talk about their upcoming surgery, or their completed surgery, and in some cases, resulting hearing loss. “Well at least I have my life back.” One of them said. All in all, I definitely prefer the “too much me” and occasional “feedback” and dizziness to losing hearing in that ear altogether.

But there was a time of grieving my gradual loss of normal hearing and permanent change in audio perception. I felt like my singing and recording careers, while I was just resuming them, could never be the same again (well, of course they couldn’t – this just made it more so, in a more concrete physical way.)

I have been trying to “wrap my head around” what it means to me to perceive in this way; trying to explain the sensation of what it’s like in my head. There is a clever if lo-fi youtube video called “Inside Todd’s Head” that Dr. Smullen told me about that attempts to capture some of the sensations of this condition. FYI, his eyeballs scrape way louder than mine do, but the heart beat is realistic.

My diagnosis coincided with my 50th year, the release of my first CD in more than 11 years, as well as some family issues that brought my own life-long experience with anxiety into sharp focus. These echoes inside my own head seem like a fitting physical manifestation of my experience with aging, mortality, and my coming to grips with fear and anxiety. They also seem a sort of ritual drumbeat calling to remind me of some notion of “my purpose…” something to do with my eternal urge to create and express and share some of what it’s like “to be me.” What it’s like to be here, now. What it’s like in my head.

But now I want to know, what’s it like in yours?