My Cochlear Implant - a journal

Posted by lizzy102 @lizzy102, Dec 9, 2019

I’ve been loosing my hearing for around 25 years. It started after my first kidney transplant - or that’s when it got bad enough to go see an audiologist to see why I was saying “What?” “Pardon?” “Could you restate that?” I would get home from work seeing clients and would be utterly exhausted, for no apparent reason. The audiologist I met with, Dr. Robert Sweetlow, advised a hearing aid for my right ear. I can’t even tell you how many aids I’ve had since then - about enough to buy a nice new car I’d guess, since they run about $2000 each.

I work and play for an RV Caravan tour company, we are wagon masters and tail gunners depending on the trip. We usually travel with 16 to 25 RVs and go all over North America, Europe, Africa and Australia. It’s super fun! And it is super stressful for me with my hearing loss. I’m with groups of people in all kinds of challenging hearing/understanding situations. As a retired psychotherapist, you have to know that I love connecting with people and being in the middle of things. Challenging? Oh my, yes.

In 2015 my discrimination was at R-46, L-32. In 2017, Resound 3D Linx hearing aides offered a lot of help to my declining understanding. So, I struggled along for those years. Then this year (2019), after a particularly challenging caravan, I decided to make an appointment for another hearing test and adjustment. In Albuquerque, NM I met with Dr. Terry Sankovitz. I just wasn’t understanding people and was cranky and exhausted all the time. After the exam, Dr. Terry showed me the audio gram... R- 14, L-12. Whaaat? Seeing it on paper my whole insides went cold and still, I was stunned. Barb, my best friend and wife, was just as shocked when Dr. Terry shared the test with her. The test measured how my ears understood speech without any visual cues. Dr. Terry said that there is no point adjusting my hearing aids further, louder wasn’t working. She talked about my options, one of which is cochlear implant. I had to let that sink in...

With a cochlear implant, there is no going back. You’re implanted period. But wait... with my ‘discrim’ I couldn’t go back anyway. The other option would be to withdraw from the world. Understanding .4 in one ear and .1 in the other is deaf. I am highly functional because I speech read; read bodies, context and situations - in the right situation I do okay. In groups, in noise, in a car, in low light... well you know.

It just happened that Cochlear Americas was hosting a panel discussion the next day, for people interested in CI (cochlear implant) and for those with CIs. Did we jump on that opportunity!!! WOW. What an eye opening. The group moderator was a woman who had been deafened as a child and as an adult had chosen bilateral cochlear implants. She was dynamic and compassionate. Her mother was a member of the panel discussion that included a couple, sisters and a single person. Here’s the best part. They hired a court XXX to transcribe speech to captions on a screen for all to see. I am not sure anyone in the room needed them as badly as did I. When I walked in the door, I felt afraid and when I left I felt elated. Arms full of booklets and information, Barb and I talked about the meeting and agreed that both of us felt a sense of hope, at last.

Interested in more discussions like this? Go to the Hearing Loss Support Group.

Hi everyone. Update - I am still i modal with the HA and Processor. I am SO grateful I had my implant surgery just before Covid took off. Communicating with masks without it would have been torture! I use an app from Cochlear Inc. called “Bring Back the Beat” for music training - it has helped me learn to discriminate various instruments from each other. I really like the games on that app! Also I use Angel Sounds for speech training. RE: Music. Like you, Julie, conversation with music on is really hard. When I remember to put my cochlear into Cafe mode, it makes a huge difference! I listen to music via my iPhone which bluetooths straight to my HA/Cochlear, same with audio books. TV isn’t a problem because I read under titles still - with British TV, that’s a must for me. Thank you to everyone for keeping this thread alive!

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Thank you for sharing this lizzy102. I also use the subtitles on TV, but realize I depend on them less than I used to pre CI. 🙂

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Hi Julie, I love reading your posts. Thanks for weighing in on important subjects. Same experience for me - err, except watching stuff in a language I am not familiar with! 😜

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@lizzy102

My processors were activated right on schedule. I have the Nucleus 7 and the Kanso. Both were activated and I’ve been using the Nucleus 7 this week.
Like folks say, the sound is electronic. Voices still sound like Elmer Fudd and there isn’t much tonal difference unless I sing - then I can hear the highs and lows. The sound is different and I’m dutifully working on aural rehab to learn to hear and have my brain normalize the sounds.
No matter what... from the moment the processor went live, I have been able to understand speech. I can hear/understand. my wife speak form the other room, she whispers to me in the car and I understand. I love this! Even thunder, which I’ve not heard in many years, is quite a sound. I can hear the rain, birds, understand some of the radio and some words in songs, It feels like a miracle or magic and is so much better than my poor HAs and amplification. I no longer have problems with recruitment - the processor just doesn’t work the same way so even loud sounds are manageable.
I am pleased and amazed.

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Lizzy - did you have implants in both ears or just one ?

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Julie - I’m reading a lot of information regarding the CI’s as I begin the process with Mayo. I too am from Wisconsin .. I am looking at the Cochlear device as that is what my Aunt has.

Can I ask what a mini mic is ? And how / when is it used.

Where did you go for your implant. I have requested Dr Driscoll at Mayo. They are reviewing all my records I sent to them right now.

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@rae54

Lizzy - did you have implants in both ears or just one ?

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Lizzy after reading further I see you are Bimodal so I have my answer.

I read you have a RV - has the Cochlear implant helped with your ability to have a conversation while driving? We have an RV and I’m hoping that after I receive my CI that I can communicate while we are traveling. It’s so difficult now when we travel not being able to have a conversation.

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Rae, I still use my Resound 3D Linx in my left ear and the processor is on my right ear. You’ll likely have a microphone that your partner can wear - the processor blue tooth’s to the mic and you can hear perfectly. Plan for a long learning curve to get your brain and implant/processor working together! Do the work. Do everything you can with as many different voices as possible - it will rocket you forward! Keep in touch please1

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I have Cochlear Inc Processor etc. My iPhone controls both my HA and the processor. It is really a great system.!

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Hello Lizzie. By “R-14 L12”do you mean 14% word recognition in right ear and 12% words recognition in left ear ? And if so at what dB level ? I have 64% word recognition in left ear at 90 dB and was born deaf in right ear. Would like to understand how I compare to your situation. In my case I would be 100% deaf if I installed a cochlear implant in impaired left ear and for some unexplained reason it didn’t work, an extreme version of your “could never go back” situation. Thus my reluctance to go to a cochlear implant.

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@jpj

Hello Lizzie. By “R-14 L12”do you mean 14% word recognition in right ear and 12% words recognition in left ear ? And if so at what dB level ? I have 64% word recognition in left ear at 90 dB and was born deaf in right ear. Would like to understand how I compare to your situation. In my case I would be 100% deaf if I installed a cochlear implant in impaired left ear and for some unexplained reason it didn’t work, an extreme version of your “could never go back” situation. Thus my reluctance to go to a cochlear implant.

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Hi JPL, allow me to tag @lizzy102 to make sure she sees your post. You ask great questions.

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