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Thursday, August 15, 2013

Hello? Is This Thing On?

Just once a year now I have an audiogram. A hearing test. YES, me. Warum? The good docs want to test that wee shred of sound that I have left (right ear only). Once that takes the last train for the coast, I’ll be going in for ABI (Audio Brainstem Implant) surgery.

What in fuck’s sake is an ABI?

From the Journal of Neurosurgery:
The multichannel ABI proved to be effective and safe in providing useful auditory sensations in most patients with NF2. The ABI improved patients' ability to communicate compared with the lipreading-only condition, it allowed the detection and recognition of many environmental sounds...
Note the way this is couched ‘providing useful auditory sensations.’ Not actual words or music but a vibe, an awareness of noise.
Cochlear implants are generally ineffective for this kind of deafness (nerve deafness) because of the loss of continuity in the auditory nerve after tumor removal.
Slightly less jargony, from Wikipedia:
An auditory brainstem implant (ABI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf, due to sensorineural hearing impairment (due to illness or injury damaging the cochlea or auditory nerve, and so precluding the use of a cochlear implant).
The auditory brain stem implant uses similar technology as the cochlear implant, but instead of electrical stimulation being used to stimulate the cochlea, it is used to stimulate the brain stem of the recipient.
auditory brain stem implant recipients only have an awareness of sound - recipients won't be able to hear musical melodies, only the beat.[1]
Why not beat the xmas rush and get the implant now while I’m all young //snort// and healthy //double+snort//? When I’ve got the hearing aid in, that Lilliputian bit of sound sense I have in my right ear is about the same as what I’ll get (fingers crossed) with the ABI.

As much as it SEEMS like I’m addicted to brain surgery, much like Mick Fanning’s hooked on waves ...ah nope, I’m not. I’m willing to wait until it’s necessary to put my brain under Doctor Barker’s skilled scalpel again.

Yeah, I know -- WHERE is my sense of adventure!?

Meanwhile, back at yesterday’s Audiogram...
I have them done at Massachusetts Eye and Ear Infirmary, a teaching hospital like Mass General, where most of my surgeries happen. What this 'teaching hospital' thing means is that there is always a crew of baby docs following the Big Guy du jour around, learning from him. It also means that, if a newbie Audiologist is doing my tests, they’re shadowed by a department head.

This is all fine by me. I know that I have a rare-ish disease and totally WANT the upcoming docs and techs to know more, more, MORE about it (Neurofibromatosis type 2). Still, it sometimes gets a bit wearing to be the freak of the day, the trick pony, the learning tool.

In my usual audiograms I get a sheet of paper with words and pics -- the tech pipes in a voice saying words from this sheet. I have to guess which word the argley bargley, recorded voice is pronouncing. Visual cue is the paper with words/pics, sound cue is a disembodied voice with the same aural clarity as Monet at his most blind -- no lips to read.

It’s a test I can’t study for. A race for which I can’t train. I sink or I swim.

Yesterday’s very young, tremendously nice audiologist brought in her department head. He suggested that, since I did so well on last year’s tests, they’d try something new. Joy. They took away my paper with pics, my cheatsheet. All I had was the goddamned voice.

Given my generally surreal brand of interpretation, much hilarity with a side of crash and burn ensued. Breast pump? Dick head? Trilby? Those have seriously never been test words before! And no, they weren’t this time either. Ding dong, I’m wrong and we went back to the picture assisted test -- on which I did much better.

All in all, intensely frustrating with a substantial dash of feeling like a failure. I know, that makes no sense at all but still, it’s there. If I could I would bring back my hearing through unyielding, focused study and Herculean hard work, I would. If I could score better on these tests through adamantine will alone -- boyhowdy, I’d be there.


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