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I’m Still Hear: My Cochlear Implant Adventure

Sound Advice by Ruth Bernstein

I’ve been dealing with my deteriorating hearing for four decades. As the years went by and my hearing continued to get worse,

Dr. Lafargue, my ever-patient CHC audiologist, encouraged me to consider a cochlear implant (CI). I was reluctant because I have a long history of hypersensitivity and allergic reactions to medications and anesthesia. My allergy to the plastic in hearing aids also did not bode well for CI devices.

Over a 20-year period, I was evaluated five times at CI Centers in New York. Each time I came away feeling it wasn’t time yet. I was still able to have one-on-one conversations in quiet spaces, use the phone and hear music, which was surprising given the fact my audiogram said I was technically deaf. Finding the right CI team is a very personal decision. Everyone should interview the teams to find the right fit for them. One size does not fit all.

An unexpected development

Six years ago, when I turned 80, I realized conversations were getting more difficult. I needed a Bluetooth streamer or captioning to use the phone and my physical fatigue level, caused by the huge amount of energy my brain was burning to keep me hearing, was slowing me down a lot. As always happens when I need to transition to new hearing technology, an unexpected development presented itself.

My CI adventure began in earnest two years ago when, on my way to CHC to have my yearly hearing check-up, the subway car I was riding in suddenly, inexplicably became a roller coaster, and I was scared! My Columbia/Presbyterian MD sent me to Dr. Lawrence Lustig, the head of the Columbia ENT Department for a diagnosis.

I had met Dr. Lustig and his wife socially at an HLAA-NYC fundraising event a few months before I saw him professionally and was impressed. My good feelings were reinforced as we went through the process of searching for an explanation for the frightening roller coaster incident. After a thorough evaluation and MRIs of my head and neck, which did not  show any irregularities, Dr. Lustig concluded I had vertigo for which there was no physical explanation. He suggested, and I agreed, I was a candidate for a CI because my ears were in good shape. I used Sea Bands to control the vertigo and it disappeared three months later.

My cochlear implant evaluation

I was evaluated by Megan Kuhlmey of the Columbia CI Department. The results were not surprising. I was almost deaf in both ears and needed a CI. I had finally found a surgeon who understood my physical needs and a CI audiologist who understood my auditory needs. It was time to move forward.

After talking with Dr. Lustig, my MD agreed to the operation because I would only be under anesthesia for two hours, something he was concerned about because of my age (86). First, we had to decide which ear should be implanted. I discussed this with Dr. Lafargue because she knows my auditory system better than anyone else. Although my right ear has been my “worse” ear all my life, listening with my left ear had recently become erratic. Sometimes it worked and sometimes it didn’t. We chose my left ear for the CI in the hope it would become more reliable.

Choosing a device, surgery and my recovery

Med El Sonnet Over the Ear Device

MED_EL Sonnet over-the-ear device

Now it  was time to choose a device I would not be allergic to. That process took 18 months, as I went through a series of patch tests for the various CIs made by Cochlear, AB and MED-EL, the three manufacturers in the USA. The final choice, which avoided the plastic over the ear hook I’m allergic to, was a MED-EL Rondo 2, a CI device that sticks to the back of my head magnetically.

Surgery took place at Columbia on Friday, August 23, 2019, at 7:30 a.m. I had no dizziness or nausea afterwards and was home eating lunch at 2:00 p.m. My daughter Debby and daughter-in-law Amy took me to the hospital, brought me home and took excellent loving care of me all weekend. My son Danny arrived for the Labor Day weekend after Debby went back to Denver.

The three-week recovery period was relatively uneventful. I was not totally cut off from the world because my right aid was working and I knew what to expect, thanks to my wide circle of friends with CIs who shared their experiences and the professionals who imparted their knowledge. I made an executive decision to forgo all extra curricular activities for the month of September, which allowed me time to heal and eliminated any possible stressful hearing situations. I found I had to nap every afternoon for three weeks. Dr. Lustig explained I needed to rest because it took my body time to eliminate the anesthesia in my system.

I told family and friends to contact me by email or text; although I use InnoCaption for operator-transcribed phone calls, I asked for no phone calls, please!  Otter, the app that does instant AI transcription on iPhones and Androids (which is 90 to 95% correct) became an inseparable part of my life. A week after my implant, I went to a friend’s funeral. Sitting three rows back from the podium at the funeral parlor, I was able to read every word said on the Otter transcription on my iPhone 10s. This phone has a mike logo on the lower right corner of the screen. When I tap on the mike, it transcribes brief conversations as well as writes dictated emails and texts.

My cochlear implant was activated by Megan Kuhlmey on Tuesday, September 16th, an experience I will write about in detail in a future blog post.

Cochlear Implant rehabilitation

One of the major advantages of being a CHC client, is that staff works together for the benefit of the people who come to the Center. They also work with the CI surgeons and CI audiologists at the hospitals throughout the metropolitan area, a big plus for everyone involved! When Dr. Lafargue learned the date of my operation, she set up a pre-op audio therapy evaluation for me with Elizabeth Ying, Co-Director of CHC’s Shelley and Steven Einhorn Audiology and Communication Centers. With that  evaluation in my file, my first appointment with Rebecca Piper, the speech pathologist assigned to me, was on Tuesday, September 17th, the day after my activation.

I see Ms. Piper once a week and practice learning sounds, words and sentences I have difficulty understanding. She assigns online practice sessions on my iPad and helps me learn to use the assistive listening equipment that comes with my CI. She reports on my progress to Ms. Ying and Megan Kuhlmey, who uses the information to make the necessary adjustments at each of my monthly CI mapping sessions. Mapping is the electronic process that adjusts the CI computer program in my  implant.

Learning how to hear electronically

As I write this I am ten weeks into learning how to hear electronically. In this short time I discovered my Met volunteer pass activates bells when I use it to open locked staff-only doors, something I hadn’t been aware of in the 20 years I have volunteered at the museum. I can hear the timer on my iPhone ring from two rooms away and my slippers make a swishing sound on wooden floors. The elevator in my building makes a clicking sound at every floor as it travels to the 22nd floor. That’s a lot of clicks I haven’t heard since I moved into the building in 1976!

Best of all, I have a lot more energy. I was exhausted at the end of every day because, when you have a hearing loss, the brain burns a lot of physical energy trying to understand and process what it hears. More energy is good news because two of my grandchildren are getting married, one in April and the other in September of 2020. Although I enjoyed my eldest grandson’s wedding on New Year’s Eve, 2018, it was a very difficult hearing situation for me. I’m hoping the CI will make it easier to hear at these two very special upcoming events.

Read my New Year’s Eve Wedding blog post »

I’m looking forward to sharing this hearing adventure with you and answering your questions.

Best wishes for a happy holiday season!

Ruth D. Bernstein Consumer Advocate

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