Tina Gets a CI

Editor’s Note: A person’s hearing loss has a powerful impact on family members, especially spouses. But what if both partners have a hearing loss? My good friends Tina Thompson and Dr. Beth Wilson share a moving and humorous account of the early days of Tina’s cochlear implant in 2014.

By Tina Thompson and Beth Wilson

Beth—January 7, 2014

I just spoke with Tina’s surgeon; the implant surgery went well and Tina is in recovery. I’ll be able to see her in about an hour.

Yesterday, we checked into the Liberty Hotel, a converted jail and had an early dinner because we had to get up before the birds for the check-in process. Apparently there’s a rule that at least one piece of paper must be filled out for each minute of surgery. Tina’s surgery was almost four hours, so her binder was pretty big.

We arrived at 5:30am to check in—just before the elevators started working. I was allowed to be with Tina for the prep, which was good because the surgical team kept introducing themselves and asking questions. Tina was relieved when they wrote an R on her right earlobe. She was afraid they would implant the wrong ear. The surgeon had a case for Tina’s hearing aid that she removed after Tina had drifted into LaLa land.

A color coded board shows when a patient is in prep, surgery, post-op, and recovery. Watching Tina’s code as she progressed through the various colors was like watching flight arrivals and departures at the airport. The family waiting area is separate from the patients’, because it would be rude to drink coffee among people who haven’t been able to eat or drink for 12 hours.

Tina will report in once the Happy Juice has completely worn off.

Beth—January 8

Tina is still down and out, although we just arrived home from the hospital.

While her surgery went well, the post-op was character building. She came out of the anesthesia with no problems, but needed pain medication for the things done to her head, which was held to one side for 4 hours. Then came a severe migraine. Since she often gets a migraine from things like anxiety, disruption of her eating routine, and caffeine withdrawal, the surgical team agreed they’d managed to hit all her major triggers.  I commented that the only thing more they could have done was to arrange for someone wearing a lot of perfume to pour asphalt nearby. Tina spent an unexpected night in the hospital.

I had bought a small whiteboard to communicate with Tina once what was left of her hearing was surgically removed. Despite attending multiple sign language classes, Tina’s vocabulary is limited to “I forgot”.  This morning I could see the staff used the board as well. She was doing much better and able to move around slowly. Just before noon the nurse completed the discharge paperwork and gave us seven pages of instructions, restrictions, and warnings.

Tina looks stunning in her new turban, which is a good thing since she has to keep all the bandages in place for three days. She has to sleep with her head elevated for a week and avoid strenuous activity and the gym for three weeks.

Hopefully the next update will come from Tina.  She is sleeping now, quite content to be in PJs that are not open in the back.

Tina—January 12

I have surfaced, but still moving slowly.

My stay in the hospital was not what I’d hoped for—I wanted to recover in the lovely Liberty Hotel. The woman in the next bed was recovering from an eye procedure but having both eyes covered didn’t prevent her from watching TV all night long. She couldn’t see it and I couldn’t hear it. Between us, we got all the reruns of Law and Order.

We removed my lovely turban on Thursday, with Beth complaining that although she is Dr. Beth, she is only qualified to treat computers. She read the discharge papers over and over again, before finally cutting the bandage and unwrapping my head. She had gone to CVS and bought enough supplies to treat a platoon of wounded soldiers. If anyone needs gauze, adhesive bandages, cotton balls, or hydrogen peroxide, call us.

Yesterday, I was feeling better, but moved around too much and now I have vertigo. Beth says the vestibular system is trying to heal and may be reacting to my movement yesterday. I’m not supposed to bend over or go downstairs, but I had to clear the dishwasher and had to check the basement for any water from the heavy rain. Also, my stitches run all the way up behind my right ear, so I can’t put my glasses on. We removed the right arm on my old glasses so I can watch TV, but they’re bifocals and never seem to be in the right place.

Beth—February 1

We’re approaching the activation milestone on Monday.  We were both nervous about how we would deal with Tina’s month of recovery and silence.  Spoiler alert: we’re still married.

With no hearing, she can talk to me but has difficulty understanding my responses. She can lipread if what I say is simple, visible, and predictable. If I appear in front of her around noon and say “I’m going to have lunch”, she doesn’t need any supplemental tools. Anything more interesting or complicated has to go on the whiteboard. I hooked up a wireless to Tina’s Netbook so we can chat over for lunch and dinner. No one who knows Tina would attempt a conversation over breakfast.

During recovery, Tina can’t bend over because it still makes her dizzy. You don’t realize how many times you tilt your head all day until you can’t do it.  We reconfigured the refrigerator so that everything she gets herself is either on the door or the top shelf.  If she sees the mailman walking toward the house, she meets him at the door to have him hand her the mail.

I have been working from home since the surgery which has been an experience. Tina can page me on my office base phone, which works well because otherwise I wouldn’t hear her calling me. And because she didn’t drive for the first two weeks, I did the shopping, not my usual job. But she complained it took me too long and I didn’t get the right things, so now she comes too. I push the cart and fetch whatever she points at. I’ve been doing most of the household chores such as vacuuming and laundry—even those that don’t require bending because any exertion makes Tina’s tinnitus really loud and the surgeon wanted her to take it easy until the activation. I believe I am highly competent in all of these areas, but Tina’s supervision would say otherwise.

We’ve even gone out to eat at familiar restaurants, bringing along the whiteboard for my part of the conversation. Tina’s interaction with the wait staff is no different than before the surgery so I am starting to wonder how well she heard their questions before, vs. predicting what they would be asking for.

I knew Tina was feeling better when she announced this morning that she wanted to climb the stairs down to the basement. Her real reason was that she’s lonely for her golf clubs. After taking attendance and reassuring them that the snow will go away eventually, she returned upstairs. For something to do, Tina has been watching a lot of captioned home reno shows on TV and I got nervous, observing a pattern of the TV reno programs, Amazon purchases on the computer, followed by UPS deliveries. The biggest box turned out to be K-cups for the coffee maker and not power tools.

Today Tina starting plowing through the information on the processor she’ll be getting on Monday. The audiologist has warned that the initial programs are focused on volume and sensing sounds. There will be a number of visits to map the electrodes to the frequencies being detected by the external processor.  It reminds me of tuning a piano.

As Tina moves through the mapping process, we will need friends who can hear and live nearby to help with noises around the house.  I can’t hear anything above 3,000 Hz with my hearing aid, so we have been walking around the house speculating what might make a noise that Tina will hear that neither of us knew made a noise.  For example, I know that the coffee maker beeps when it is done—but only because I read that in the manual.

Next Week: Activation!

Tina Thompson, a retired social worker, and Dr. Beth Wilson, an engineer, are passionate advocates for people with hearing loss and long-time members of the Hearing Loss Association of America. They live in Massachusetts.