The Road Travelled

Some time after 9/11 I was having my first "huh" moments, usually in meetings or with background noise around while having a conversation.  It seemed very subtle, and hard to be sure about.

"We were wondering what you'd have to do about that," I heard from a coworker, after I mentioned having my hearing checked.  Apparently it wasn't so subtle to everyone else....

My ENT wanted to get an MRI - he really liked MRIs, maybe a little unnaturally, I thought.  But when it came back, he just said, "There's 'something' here I'm not ready to interpret.  You need to see a neurologist."  So much for bedside manner!

The next year or so was full of strange connections, largely forced by health coverage that required specific participants, and my MRI seemed to baffle more people along the way.  Eventually though, I ended up at Hopkins neurology around the end of 2003, and even there I passed between the specialists who had a clue.

An aside please here, bear with me:  It's "Johns Hopkins" university or hospital, (not "John", puhleease) - that was the man's name.  Hopkins' home is here in Baltimore, and while some travel far to see their specialists, the experience for me is more like visiting a really big clinic.  The docs sure do seem to know their stuff, but the parking and walking is still particularly annoying.  Hey, didn't those guys just have their own reality show or something?  

OK, it turns out there are nerve problems.  It's not the ear, it's the nerves, and the hearing nerve is one of the largest in the head, so problems often show up there before anywhere else.  Oh, and I'm also one of about 50 known cases in the world, and boy do most of those guys have it bad off, they tell me.  I'm in a pretty good place, relatively.  "Wanna be in a trial?"  Cool.

In the meantime, I lost my job of several years (company buyout), hearing aids are indicated, and my interviewing confidence is sliding, because I'm not able to have a solid conversation, let alone precisely discuss tech stuff.

I started on the somewhat random road of finding an audiologist.  This is well before list memberships, or knowing anyone late-deafened, or the "Say What?" Club (man I love that line now), and it was just convenient.

The audi seemed to know his craft, and after considering options (and not yet being fully comfortable with the idea of wearing these things), I went with in-the-canal hearing aids.  Not invisible like the teeny totally inside ones, but fairly low profile, and with more features than the tinier ones in general.  They were quite expensive, and I needed help to pay for them.

What the audi didn't consider, however, and I didn't yet have the knowledge to press, was the details around this nerve thingy.  The fact is that people with my condition tend to go through higher-powered aids quickly, and it's best to just buy the cheaper ones, because they won't last that long anyway. (<== hindsight).

Jumping ahead: New living situation, new audiologist, new aids (hi power, behind the ear, chevy-not-lexus) and I landed a creative position part-time, replacing a full-time employee who opted not to take the cut.  It's a referral from a colleague that was part of a cost-cutting consultation during the credit crisis (a leasing company, go figure.)  In the last three years I've been here, those shiny new aids are already worthless.  My right ear gave up less than a year ago, now complaining from the pain of the volume before it actually hears anything. My left is sounding more gravelly and whispery by the week.  Conversation is hard, and I live mostly in email.

When I originally met my new audi, I came in full of fire and brimstone, with more knowledge and fully put off from the decisions made with the last one.  She weathered it with humor, and has been unflappable ever since. So when she suggested the possibility of a CI, though I wasn't immediately ready until I explored some other information, I started thinking and planning.

She performed the tests for a CI, and all those words and sentences that used to be familiar, I just can't hear any of them.  There's still a faint sound of voice, so I know when she's speaking, but no comprehension at all.  The good news seems to be that there's no question whether I passed, either (or failed, as it may be).

I was pre-approved for the surgery and scheduled for early September.  The day before surgery, I got a call/email that the CI rep was ill, and couldn't transport the hardware for the next day, and it needed to be rescheduled.  Ugh!  All that prep, no NSAIDs for a week (another story), and now this...  The clock was reset for 10/6 and I kept waiting.

About a week after the missed date, my CI manufacturer issued a recall of the model I was to receive.  Frosted at this point, I started contacting everyone involved - "what's the plan now?" I insisted.

It turns out they were still manufacturing the previous version of the implanted part, which had been on the market for many years and is still compatible with the latest electronics on the outside.  I asked implanted friends (now there are many) about their experiences with these specific parts.  And the older one had never had a defect.  So I was on again, and not stopping.

Pineapple time!  Someone on the CI mailing list mentioned pineapple and healing.  There is some drug-like supplement in there, it's just easier to get from pineapple rather than a prescription.  I didn't buy any fresh (that stuff will corrode your fingers if you're not careful), but I gave it some lip service and drank a lot of Dole's over the next few weeks.  :)

People are quizzical.  How am I feeling?  Am I anxious?  Not really.  How am I so Zen?  Ha!  It's just another hurdle lately!  First, this is just the plumbing, so to speak.  We won't know whether the whole thing is successful for another month, after I heal and the electronics come into play, so this particular day is more towards the annoying - planning, having a ride, scheduling the time off, bleh.

Continued...