Activation Day

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Introducing Leslie Lianos, my all-powerful audiologist. She can make deaf ears hear with a click of her mouse.

I went to my post-op appointment black-eyed and woozy, listing to starboard and holding onto my husband’s arm to walk from the parking garage.  Normally, I would be lining up my offense and calculating a plan to fake the doctor and persuade the audiologist into an early activation.  The earliest I’d heard was one week post-op and I was still a day short of that.  But I wasn’t going down that road.  There was too much riding on this big gamble (my residual hearing for the implant behind door number one) and I wasn’t in a position to absorb a ‘no’.  I would rather not ask for early activation than be turned down.  Besides, my head was still swollen and achy.

So I read lips, straining through an hour-long equipment orientation (seems my good ear is confused about which side of my head is deaf) and prepared myself to wait, if not the regulation two additional weeks, at least one.  Imagine my surprise when, just as we reached the end of the gadget demo, Leslie, the audiologist who had introduced me to my new gear with pleasure and enthusiasm unusual for someone who has done this same exercise hundreds of time, offered to “turn me on”.

What.

I sat up straight for the first time in a week.  Who me, woozy?  What’s a little swelling among colleagues in the fight for better hearing?  The stitches were healing even as I sat there counting the number of charging stations I would need for my new accessories.  Yes!  Now!  Let’s do it!

I walked unassisted to the doctor’s office across the hall for the actual post-op exam which took all of two seconds. Go, Dr. Peters said.  Leslie’s ready to turn you on.

What fun these Ear Institute people turned out to be!

So there I was, my scalp connected via cable to the audiologist’s computer, the ACTIVATE button in plain sight right next to a series of bars that represented electrodes currently awaiting instruction in my cochlea.  George held his iphone ready to record the moment and Leslie explained what she was about to do.  Waiting for her cursor to press the activate button was just like hundreds of other moments in my life: my dad about to let go of my bicycle for the first time, driving a car, getting married or giving birth.  Things set in motion, relying on optimism that either I could do what so many people before me had done, or faith in God from whom all blessings flow, or the sheer force of momentum pushing me over the threshold, water over the dam, past the point of fear, into something new.

An immediate new world of sound.  Not what normal people hear.  Not what I hope to hear in two or three months, but sound.  Lots of it.  Sound glorious sound.  Sound like a recording made using a secret camera in a room with bad acoustics thirty years ago.  Each sound has a bell attached to it.  A tinny cow bell.  What it lacks in quality it makes up in quantity.  Low sounds and high sounds, sounds so high I haven’t heard them since I was 20.  Big, generous, whole sound.  And so much more where this came from.  I’ve been warned that learning to hear with a cochlear implant will be difficult but, so far, compared to daily life with hearing aids, it’s a walk in the park.

Post-Op Recovery

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IMG_1036Here I am on the evening of surgery day.  Not my best look.  Although I am a novelist who spends entire days imagining, and then writing about things I have not personally experienced, I am bad when it comes to imagining and preparing for experiences that are about to happen to me.  For instance, when I travel to cold places I tend not to pack enough warm clothes because it is not cold in Dallas and I cannot imagine being cold where I am going.  When I have surgery I do not prepare for downtime afterwards because I can’t imagine I will feel any different as a result of cutting, drilling, and anesthesia.  As you might guess, my life is full of surprises.

This is how the first week went:

Day of Surgery:  I don’t remember much about leaving the hospital.  My surgery was at 7 AM and I was home around noon.  I slept in the car going home and my husband helped me climb the stairs to my bedroom.  I slept all afternoon and when I got up around 5 pm I felt pretty good and visited with friends who delivered food.

Day 1:  Not bad.  I worked at my desk and got a lot of busywork done although I felt a bit woozy.  I napped and did a little kitchenwork.  The head gear really bothered me and I finally loosened it a bit.  Took pain meds.

black eyeDay 2:  I was allowed to remove the head gear on the morning of Day 2 and it came off at the crack of dawn.  But two unpleasant things started on Day 2:  dizzyness and a black eye.  I slept all afternoon.

Day 3:  My worst day.  Woke up nauseated and could not stay upright long enough to pour water for tea.  Took a nausea pill and promptly vomited.  Spent the entire day in bed asleep or just lying there. Could not read or write and was dizzy when awake.  Note:  no lying on surgery side of head.

Day 4:  Better.  Sometimes I would spin out of control as I lay in bed.  Opening and closing my eyes helped.  I worked at my desk and noticed that I could hear a dog whining for attention on my right side but when I looked for her she was on my left.

Day 5:  I left home.  Showed up for my regular volunteer stint and then went to the grocery store.  Seemed people were looking at me funny and I remembered my black eye.  I did not take a nap and I drove without my sunglasses, the incision behind my ear too tender for the arm of my glasses.

Day 6:  I went to the doctor’s office for my post-op appointment and got a big surprise.

 

My Cochlear Implant Surgery

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I was asleep but the operating room probably looked something like this

I slept through the entire procedure so I don’t have anything to report about my surgery.  However, I can tell you what the psychotherapist who had observed Dr. Peters in surgery told me in my pre-op interview:

In her opinion, cochlear implant surgery is like dental surgery in that there is not much blood involved and the surgical instruments resemble tools a dentist uses.  The doctor cleans the area, makes an incision behind the ear, drills through the skull to thread the electrodes into the cochlea, creates a niche in the skull above the ear to place the implant, and closes the incision.

The psychotherapist said that, having observed the procedure, she would never be afraid to have a cochlear implant herself, should the need arise.  Even though I was asleep while it happened to me, I can agree that there is nothing to be afraid of.

Zzzzzzz.

 

 

 

Last Days of Residual Hearing

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Me with my mother, sisters, and cousins for Three Birthday Weekend in Charleston.  Note the tiaras.

Me with my mother, sisters, and cousins for Three Birthday Weekend in Charleston. Note the tiaras.

In case I got cold feet, the Girl’s Trip to Charleston with my female relatives served to remind me of the profound nature of my hearing impairment and how lucky I was to have an opportunity to act.  Every group conversation in every noisy restaurant where I could not keep up served to reaffirm my appointment in the operating room.

I would sit at the table with a smile on my face, looking engaged enough to be involved but not so engaged that someone addressed a question or remark my way.  I have enough energy to strain for about one hour before I am exhausted and ready to quit asking people to repeat themselves and stop trying to understand my way into a group conversation.  But my trouble is not limited to noisy restaurants and groups; I can no longer understand one person in a quiet room without reading lips.

The alternative is to stay home.  And as I reach the limits of my ability to participate in the hearing world I increasingly understand why many choose that option.  My husband, friends, and family are very generous in accommodating me but there is a point where it just becomes a waste of energy to try.  But I don’t want to stay home.

On the day before surgery, my husband asked me if I was nervous.  I said I was not.

 

Choosing the Device

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This part of the device is implanted.

The decision was mine and I put it off as long as I could.  Three manufacturers make cochlear implant devices and neither my doctor nor my audiologist nor Google would tell me which of the three to choose.  The only person who will tell you without hesitation which brand to choose is one who actually wears the implant.  And they all recommend the same manufacturer.

The one implanted in their head.

My method for making this decision was to:

  • Query every resource my audiologist provided
  • scour online websites and blogs like the one I am now writing
  • ask my husband for help (he’s good at this sort of thing)

On decision day, my husband and I reviewed all of the data: manufacturer’s materials, emails, and notes (not mine, the cogent notes he took during demo sessions, thank goodness) and developed a list of attributes.  We scored the devices for each attribute on the list and then weighted the attributes most important to me.  I am pleased to announce that our method generated a clear winner.

(It is not the purpose of this blog to promote anything other than the author’s experience but in the interest of sharing details that will be important to some, I’ll divulge the fact that I chose Med El.)

Pre-Op TO DO List

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The BEFORE picture.

I reached the point where I was ready to commit to a cochlear implant and called to schedule my surgery.  But like Dorothy arriving in The Emerald City to ask for a new ear, it wasn’t that easy.  Before a surgery date could even be discussed with The Great And Powerful Oz I would have to fetch a few broomsticks.

I exaggerate.  Various doctors and technicians were required to examine and certify me cochlear implant-ready before proceeding.  Following is the list of people and procedures that signed off on me:

  1. Audiologist to make sure I’m REALLY deaf
  2. Auditory-Verbal Therapist for a preview of what’s to come
  3. Psychotherapist to make sure my spirit is ready
  4. Internist to make sure my body is ready
  5. Brain MRI–last chance for an MRI before magnet installed
  6. Chest X-ray: just checking…
  7.  VNG Test: videonsytagmography where cool and warm air was blown into my ear while I counted back from 100.  (I passed)
  8. And if that wasn’t enough, I was sent to the pharmacy for a pneumonia/shingles vaccination.

When I arrived for my pre-op appointment with Dr. Peters, I felt the confidence of one who has accomplished a demanding mission, actually showing up with the infamous broomstick.  But I’m totally on board.  If there is any reason I should not have a device implanted in my skull, I would rather know before the drilling occurs.

And Then I Went to the Support Group

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Each meeting features streaming captions projected on the wall.

At a meeting of the Cochlear Implant Support Group I quickly discovered there were two types of people in attendance:  those who could hear and those who couldn’t.  The people who could hear all had cochlear implants; the rest of us had hearing aids.

The people with cochlear implants were calm and happy.  The people with hearing aids were craning to read the captions projected on the wall as the speaker presented a program on the latest hearing gadgets.  The people with cochlear implants asked questions and shared anecdotes.  The people with hearing aids (me included) just tried their best to keep up.  Admitted, the hearing aid people were having trouble keeping up, not because hearing aids are inferior, but because we’d exhausted the benefit of hearing aids; they’d done everything they could for us and it was time for us to move on.

A kind young man with a cochlear implant he’d had since the 80s introduced himself and offered encouragement.  He said the most surprising thing was how much more energy he had after the implant.  He no longer had to work so hard to understand everything and had excess energy to put into other things.  That sounded promising as I headed home, exhausted.