Last February I got new processors. Here’s my latest update on what I’m hearing, and how I’m working through the insurance issues.
Music has been fantastic, and I was listening to it for hours every day throughout March. Recently I’ve been taking a break, though, because it was getting to be a little bit much: whenever I took my processors off I would keep hearing Boléro or Fool on the Hill or any of a half-dozen other pieces of music. I’m sure this happens to normally hearing people too, but for me, when the processor comes off there’s nothing to compete with my auditory cortex, and it gets unruly. So I had to give it a rest.
Not that I’ve been completely off of music. I’ve tried, among other things, Dave Brubeck and Luther Vandross, and The Byrds, and the Brandenburg Concertos. I still get that same wow effect from music generally.
When I last visited the audiologist in early March, the goal was to make me hear music better, especially by spiffing up my right ear, which has always been the worse ear. We turned on all sixteen electrodes in my right ear and amped the IDR up to 80. Just opened that baby up to see what it could do. Music sounds fuller and more connected in that ear, although still nowhere as good as in my left ear. As I mentioned in my last entry, the problem is pitch matching: the same key on a piano keyboard sounds different to both ears.
I saw the audiologist again this morning, and the obvious approach seemed to be to turn on two more electrodes in the left ear. So now I’m running 14 electrodes left, 16 right. The idea is to work up to matching the two ears electrode for electrode, frequency range for frequency range.
I haven’t really had a chance to listen to music with both ears that way yet. But the left ear sounds extremely strange for speech, with voices sounding much hollower and more mumbly. Whole consonants have gone AWOL. I can barely understand people’s voices. I can’t even understand my own: to myself I sound like I’m talking with my mouth shot up with Novocain. My wife sounds like a male teenager from Alabama.
Here are some of the mishearings I had over dinner:
Working sounded like walking (the words sound the same to me now)
Daughter sounded like straddle, as in “Linda straddle…”
Police sounded like British (I heard “It’s a British drama” when we were talking about The Wire)
Good sounded like little (an odd perception of an extra syllable there)
Lawless sounded like nerdiness (again, an extra perceived syllable)
Erin sounded like Aaron
Jeannie sounded like cheating
I’m not too worried about it, of course: my familiar old programs are safely ensconced in the other four program slots and I can have them back any time I want. But it is the strangest-sounding auditory experience I’ve had since activation in 2001. It may be that the newly turned-on electrodes are interfering with the other electrodes. That was why, years ago, I turned off four electrodes in the left and right ears.
Now we’ve woken them back up for the express purpose of putting them to work for music. My brain may or may not learn to interpret them in a useful way. Piano keys do sound more similar in both ears. Whether that is a good thing, I am not entirely clear on at the moment.
We tried turning ClearVoice off three weeks ago, and that appears to have been a mistake. I heard a good deal of background hiss. We turned it back on this morning, and the hiss has mostly gone away.
In my first-look blog entry on the new processors, I wistfully noted how much easier the system would be to use if my iPhone could talk directly to the processors, without having to use the compilot as an intermediary. I’ve heard rumors that Advanced Bionics is working on doing that. (Just rumors on Facebook: I’ve been out of touch with Advanced Bionics for a long time, and I have no special insight on what they’re doing.)
There is a significant problem with the ComPilot. I’ve noticed that when I turn my head to the left, my right processor moves relative to the wire in such a way as to lose the connection. The cutout lasts only a fraction of a second, but it sounds like a crackling or popping sound, and it’s quite distracting. I can reproduce the effect by holding the wire near my ear and moving it back and forth. I also get it with both processors in the right ear, so I’m sure it’s not processor-specific. Nor do I hear such sounds when hearing in the usual way through my microphones.
Why I don’t get these cutouts in my left ear, I have no idea.
I sent the ComPilot back on the guess that the wire might be damaged, but the new one has exactly the same problem. It doesn’t happen if I wear the wire around my neck in such a way that it makes a larger circle, but I can’t think of a way to wear it such that it does that. It might be a design problem, and if so, it is a serious one.
I also got a chance to try Phonak’s Roger Pen FM system. (Strictly speaking, it’s not an FM system, but the idea is the same.) It’s a handheld microphone that sends a speaker’s voice wirelessly to the user. I used devices like this all through high school and college, so I’m very familiar with them. Unfortunately, I wasn’t impressed with the Roger. Its range is terribly short, less than thirty feet. Even worse, if I turned around just fifteen feet away, my body would cut off the signal. With a range like that, the device is just not practical. It’s a pity, because it costs $4,000. I certainly wouldn’t buy it. I have heard, however, that Phonak’s “Inspiro” transmitter works better, and I hope to have a chance to try that too.
My insurance saga continues. So far CareFirst has reimbursed fifty-five percent of the cost on an out-of-network basis, and I have sold two Harmony processors back to Advanced Bionics, making our total cost so far about $7,000. Much better than $19,210, but still a lot of money. I appealed to CareFirst have it treated as in-network, on the basis that I had to buy it out-of-network; that is, I had no choice but to buy them out of network. They rejected it with a form letter. I called to ask what the next step was, and they had no record of having sent the letter. In short, they denied having denied the appeal! I am now writing a letter to the DC state insurance commissioner asking for an external review, and we’ll see how that goes.
After two months of using the new processor, I’m generally very pleased with it. Music sounds fantastic. But the user interface – meaning the remote and the ComPilot – desperately needs an overhaul and an upgrade.
And at the moment my wife sounds surpassingly weird. But of course I love her dearly, no matter what my electronics think she sounds like.