Choosing Bionics

Making the decision to receive an implant was the greatest hurdle on the road to actually obtaining one. 

This isn’t the case for everyone, apparently.  I’ve conversed with many who were ready, but didn’t yet meet the criteria; it seems they weren’t “deaf enough” by implantation standards.  In my case, my decline progressed quickly enough that I hadn’t fully digested the idea until I was already well within the zone, so the rest was simply up to me to put in motion.

When it was first mentioned, I immediately rejected the idea; surgery just seemed over the top!  I’d been hearing with aids pretty well so far.  From time to time, my progressive decline meant that once they were calibrated, they didn’t stay that way; or I’d eventually “outgrow” them and need more powerful ones.  And there was some medical hope, also.  I’d been chosen for a drug trial that showed some promise for the root cause of my hearing loss.  No, the surgical option was irreversible, and I was determined not to go that route while other options remained to be attempted.

Yet, over several months, a few other things happened.

When my hearing aids were sounding “not so great” again, I went in for a fitting (calibration), and I experienced a first.  My hearing loss hadn’t exceeded the capability of the aids, as had happened before.  These were quite powerful.  Instead, my right ear was registering pain from the increased volume before it registered sound.  So the aid was capable of greater volume, but now it was getting so loud I couldn’t take it anymore. I hadn’t outgrown my aids, I’d outgrown my own senses.  I was deaf in one ear.

I also spent months taking yucky medicinal syrup for the drug trial, and going in for weekly blood tests for analysis.  The result was largely uneventful.  But during this simple passage of time, I noticed the remaining hearing in my left ear becoming more “muddy”.

The issue of amplified noise is a problem with hearing aid users from their very first aids, but it’s generally correctible, and we all spend lots of time with our audiologists getting everything “tuned” just right (or close enough).  But at a certain point down the road, it’s possible there just aren’t any adjustments or filters remaining.  If a voice on the radio has lots of static, for example, and you can’t filter that out, then turning up the volume just makes the static louder.  Most HOH (hard-of-hearing) people tell a story of a friend or relative who’s asked, “How can (s)he hear some stuff, and also be deaf?” And this is why.

My left ear was following the path of my right prior to hitting the “pain point”.  I estimated I’d be deaf within the year if it continued at this rate.

Back in April, I attended my first HOH convention.  The SayWhat? Club was meeting in Baltimore this year, my home town.  Karma, neh?  Sort of like, “We dare you not to attend this time.” OK, ok, I get the hint….

This was a game-changer.  I didn’t know what to expect (first-time attendees never do), but for the first time I was among others like myself who’d had a wall placed between them and their chosen friends/professions/pursuits by this “hearing thing”.  It was a moving experience, being flooded with information and new behaviors within this protective micro-environment we’d created for the weekend.

And I “met” my first cochlear implants in person.

There were attendees, seminars, professionals – and the people could Hear.  I had better natural hearing than they did – they were deaf – and yet I could barely make out the conversations they were participating in.  Jotted notes, careful speech, CSL (crappy sign language), they were all part of getting it done, and in this crowd it was second-nature, but nothing was quite as earth-shattering for me as the clarity of comprehension shared by these implantees.

I could see my hearing coming to an end.  I could see work failing along with it, and not knowing what I’d do afterwards.  I spoke to my audi about the possibility of a CI.  We had to test my remaining hearing, but it was so far gone that there wasn’t any question whether I qualified.  The process was in motion.

From among the many voices I heard, “It might go faster than you think!” 

Activation Day

This is where the rubber hits the road.  No surgery is to be taken lightly, of course, but any physical problems or complications that might have arisen would have been apparent before now.

A few idle weeks passed while waiting for activation.  It was set up similar to a hearing aid visit, of which I've had many, but my anticipation was really focused on this event.

The first sounds were from test tones to learn the minimum signal I could detect at different frequencies.  Immediately afterwards, I was inundated with a whirling barrage of sound that reminded me of '60s psychedelic music. I tried to describe it while I was sitting there waiting for the next step in the process; where do they come up with these nutty test sounds, anyway?

At one point I tried to describe a hissing I'd heard.  I said "ssss".  I heard "ssss".   What?!?  My audi was speaking, and suddenly as I stopped talking and focused on her lips, I realized that the rhythm of the psychedelia was coming from her.  No way!  Things jumbled round, made new connections, and suddenly I was hearing her speaking, and understanding it.  The noise made sense now, but it was as if I hadn't been listening -- it seemed like background noise coming from all the wrong places that I was blocking subconsciously.  Once the realization hit my brain that "hey, this actually means something," it clicked into place almost immediately!

Ten minutes later I'm conversing with my audi and her assistant, listening to blind test vocabulary and repeating back, oh, about 80% of it (can't get the "G" sound for some reason), and everyone is pretty tickled with the outcome.  I know I am.

Over the next couple weeks, I'm plugging myself into everything I can.  TV, captions off.  Receptionist calling on the speaker phone.  Practicing phone calls to recorded messages, the more different voices, the better.  Music in the car.  Music plugged into my cell phone.  First meeting in the conference room - I had CART to fall back on, because we didn't know what results to expect, and it was important. I'm glad I had it to get over that hump, but it turned out to be a good meeting.  I was having a conversation!

And days later, my first group conference call; five of us, speaker phone and two more on the other end.  Feeling a new ease with myself among friends and colleagues, like the old days, and able to discuss things with them in a meaningful way.  That has really been my breakthrough experience.

...More of That Road

The surgery was smooth, and I was prepped against my real fear - nausea during recovery, which I'd experienced before - so it was really about being patient (no pun) for the moment.  There was some pain, but nothing like I'd expected.  I would find out later that I was on morphine and oxy-whatever at this point; I had to ask for it once again overnight, but after that first 24 hours, I was fine with just Tylenol for about four days.

There's really only one way to bandage the head, by wrapping things all round it just to hold whatever area in place.  As I write this I'd almost forgotten, but it really was the most annoying thing, and no way to look normal with all that going on.  At one week I had the staples/stitches removed and everyone was very pleased, and I was rid of the bandages, finally.  I told them all about the pineapple discussions...

There were a few side-effects to all this tunneling around the skull and ear, and there are enough possible ones with this surgery that most recipients experience a few of them. I've had a couple myself, and at the end of the week dizziness jumped in and dominated the stage.

I was most concerned because it started so late, when I was now feeling well along.  It turned out to be temporary, subsiding after about two days, and I felt well by the time I was heading back to work.  As usual, the collective feedback from other CI recipients gave me the perspective I needed not to panic, and to realize that what I was feeling was quite mild within the range of others' experiences, that it should be temporary and work out well.

The other side-effect is altered taste.  There's a jumble of nerves running around the vicinity of the inner ear, and this is a common outcome.  People have described it as a metallic taste, probably/hopefully subsiding over a period of a few months.  Another way to describe it is the remaining effects of novacaine after the dentist's office, when it's almost, but not completely, worn off, along the side of the mouth and tongue.

This is an annoying one, because it's always there, and affects a pleasure center (ah, food!).  But it does seem to be following the curve, and I can hope it will be gone at some point.

For work the next week, I wore a series of baseball caps.  They covered up a little, and seemed more distracting than parts of my head would have been without them, which I thought was a good thing in this case.

It was interesting to try to figure out who knew what.  I know there's chat among friends at the office (in which I could never participate, unfortunately), and the few people I told directly about my procedure, I also gave permission to pass it on.  But I didn't broadcast any announcements, considering there may be those who keep to their own affairs, and wouldn't prefer it.

Now back in the office, there's a minor reorientation with each person I see, depending on what they knew or guessed already -- "there's a hat, I heard something happened, but oops, he still can't hear, wha...?"

After a week, I had enough hair back and another followup with a clean bill of health, that appearances are back to barely-hearing normal.  Now it's just a matter of waiting a couple more weeks until ... Activation Day!

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...

The New Sound of Silence

What is tinnitus anyway?

It seems like most people with hearing loss are familiar with it, and few who have normal hearing know it by name.  It is, in effect, another layer of hearing loss difficulty that's invisible to the observer.

I have an analogy.  (People who know me well are rolling their eyes...)  Before CDs, tape (cassette) technology had come a very long way.  Just about all the latest techniques were aimed at one competitive edge:  reducing hiss in the recording.  That hiss is to tape what tinnitus is to human hearing.

As your hearing diminishes, whatever the source problem may be, the destination (brain) is receiving less and less sound signal.  Over time, it learns to listen to the lower input levels more and more carefully, until it approaches its absolute best effort.  But everything in the world has background noise, even the brain's "electronics".

In the tape analogy:  let's say you record a sound at quieter and quieter levels.  Each time you play it back, in order to still hear the sound, you'll need to turn up the volume (amplification) a little more each time.  But one thing that stays the same throughout is the background (hiss, in this case).  Eventually, as you turn up the volume, the hiss will become loud enough also that it interferes with or masks the original signal that was actually recorded there.

I've had tinnitus for years.  In my case, it's my Little Jet Engine, and it makes hearing tests difficult, because the audiologist is always searching for the lowest levels that can be perceived.  During testing, there's a lot of "did I just hear something...I'm not sure?" moments because of the "noise".

Remarkably, after having my implant activated, I've slept the past few nights in absolute silence (sleeping with  the CI removed).  Before, with aids, I'd remove the hardware and the hearing signal, but the jet engines remained.  Now, there's so much to hear all the time, and at such a level, that my brain just isn't trying so hard to hear those sub-whispers anymore, and amazingly, has remembered how to relax and just be quiet.

Hard Tech vs. Concerned

As I'm thinking about how to approach this, I realize you're all among (at least) two audiences.  Friends near and distant who want first to know simply "OMG how are you doing?" and so many others (friends as well) at different points along a similar path of hearing loss.  Many of those are frustrated by the scattered information available and want some nitty-gritty they can get their teeth into.

I know I had lots of questions and not always solid answers, but by continuing to ask, I was fairly comfortable when I finally got to implantation (surgery to place the electrodes behind your ear) and activation (turning on the electronics after the surgery heals).

Today is Day Two after my own activation.  I'll still have a lot of new information coming at me, but I feel like I'm at a point where I can start filling in some of those blanks leading up to this event for others.  Whenever I approach the detailed geek-speak, I'll try to give a heads-up for anyone who just finds that stuff TMI.  (Edit: in hindsight already, maybe I was being too optimistic, sorry; "it's my nature!")

Skip what you like, this isn't torture. :)

I hope the tools here, like monitoring and alerting for changes, and always having a link to my email, will help us stay connected. Whenever the events warrant, and whenever you feel like dropping in to see what's been happening, this'll be the place.

Let's Get Started!

Short intro:

After hearing aids and a long (or quick) slide to deafness, I was recently implanted with some cool 21st century technology, and it was turned on yesterday. Today I'm hearing again, and only now realizing just how far things had deteriorated previously.

This tech isn't unknown and others have written about it, but this is here for my friends and hearing loss compatriots who've been inquisitive about my own personal experience.  More soon!