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 group.

Hi JPL, I meant 12/15 out of a hundred words. Cochlear Audiologist said I should have had the implant years earlier!

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Here I am, 2021! I just finished leading an RV Caravan of 20 RVs and 30 female guests. It was amazing, we shared the gorgeous Grand Circle (the four corner states) and all of the National Parks therein. We all had a Covid cautious fabulous time. I cooked, organized, went on hikes, played games and talked talked talked and listened listened listened! None of this joy would have been possible before my CI.

I’ve figured out that it’s fairly easy to tuck my processor up inside my hat – a big brim sun hat and enjoy the day.
Music has become a true pleasure again and listening to audiobooks narrated by MEN – they were so much harder for me to understand pre-CI.
I still hear noise using my linked Resound 3-D Linx HA on my other side and it helps with balance and locating speech, it seems to augment the CI to help me understand speech in difficult circumstances.

Was it worth it? Yes, Will I do the other side when it is time? Yes.

Thank you ask four following my Journal. I’m so glad to share the journey with you.
LW

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Hello Everyone,

I found this all very informative. I have unilateral hearing loss, with 4% hearing in my right ear. After 3 appeals with my insurance company, I have been approved for a CI in that ear, but insurance has approved me for a 3 month window – Yikes! I need to learn a lot in a short time. I am working with a Doctor at Mayo and he has a CI and wears a HA in the other ear. I have to decide on which brand of CI. Very nervous about the implant surgery/recover/and retraining my brain process. The posts on here have helped. It's reassuring to read that you are happy to have gotten a CI. Thanks for sharing!

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@lynn4hearing

Hello Everyone,

I found this all very informative. I have unilateral hearing loss, with 4% hearing in my right ear. After 3 appeals with my insurance company, I have been approved for a CI in that ear, but insurance has approved me for a 3 month window – Yikes! I need to learn a lot in a short time. I am working with a Doctor at Mayo and he has a CI and wears a HA in the other ear. I have to decide on which brand of CI. Very nervous about the implant surgery/recover/and retraining my brain process. The posts on here have helped. It's reassuring to read that you are happy to have gotten a CI. Thanks for sharing!

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I went with the Advanced Bionics because their CI 'talks' to their Phonak HA – meaning a lot less work for me. I'm 81 and worried about doing it at my age but so thankful I did. I can now enjoy – and hear – family gatherings. And the family have been wonderful in supporting me! They also help with my retraining, making sure I get out and about, especially to noisy places, they talk to me on the phone a lot (the iPhone streams which is wonderful). From 3 months of activation I can now understand a lot of the dialog on TV movies (I had given up watching movies). There are programs for training that you can use on computer and phone. Using audio books is great as well (I use the ebook and turn on audio so brain hears and sees at the same time). I listen to music a lot, especially all my old favorites that the brain tends to remember. Bill has the TV on a lot. What you don't want is silence.

Wishing you the very best.
Surgery was very easy as was recovery. Followed doctor's orders. I had a few weeks of finding it difficult to sleep because of the one ear being the side I always liked to sleep on (took a Tylenol for those few weeks at night and worked great). During the day I really wasn't aware of it.

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@billchitwood

I went with the Advanced Bionics because their CI 'talks' to their Phonak HA – meaning a lot less work for me. I'm 81 and worried about doing it at my age but so thankful I did. I can now enjoy – and hear – family gatherings. And the family have been wonderful in supporting me! They also help with my retraining, making sure I get out and about, especially to noisy places, they talk to me on the phone a lot (the iPhone streams which is wonderful). From 3 months of activation I can now understand a lot of the dialog on TV movies (I had given up watching movies). There are programs for training that you can use on computer and phone. Using audio books is great as well (I use the ebook and turn on audio so brain hears and sees at the same time). I listen to music a lot, especially all my old favorites that the brain tends to remember. Bill has the TV on a lot. What you don't want is silence.

Wishing you the very best.
Surgery was very easy as was recovery. Followed doctor's orders. I had a few weeks of finding it difficult to sleep because of the one ear being the side I always liked to sleep on (took a Tylenol for those few weeks at night and worked great). During the day I really wasn't aware of it.

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Thank you Julie for the comments. So many things to think about so hearing others experiences is very helpful.

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@lynn4hearing

Thank you Julie for the comments. So many things to think about so hearing others experiences is very helpful.

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One thing with Mayo, you are working with the one of the very best! I was so impressed with the care they have taken every step of the way.

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Lynn,
So glad you are getting an implant! Mine was activated in early November. What a wonderful experience! I was able to recognize voices right away, a very very fortunate thing. Some people only hear noise for awhile. Eventually, the brain adapts and allows you to hear properly. You WILL hear better.

I'm in western New York state and work with an audiologist from the University of Rochester, an excellent practice. My surgeon was wonderful and the whole process has been problem free. Trust your doctors and follow their directions and I'm sure you will do well. Best of luck to you. Nancy

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@lynn4hearing

Thank you Julie for the comments. So many things to think about so hearing others experiences is very helpful.

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@lynn4hearing I sent you a personal message with contact information for a lady you would enjoy meeting. She's in FDL. Would love to meet you, etc. It helps so much to talk to people who share experiences. 🙂

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@julieo4

@lynn4hearing I sent you a personal message with contact information for a lady you would enjoy meeting. She's in FDL. Would love to meet you, etc. It helps so much to talk to people who share experiences. 🙂

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That would be wonderful. I would really appreciate chatting with her. Thank you!

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@grovelander

Lynn,
So glad you are getting an implant! Mine was activated in early November. What a wonderful experience! I was able to recognize voices right away, a very very fortunate thing. Some people only hear noise for awhile. Eventually, the brain adapts and allows you to hear properly. You WILL hear better.

I'm in western New York state and work with an audiologist from the University of Rochester, an excellent practice. My surgeon was wonderful and the whole process has been problem free. Trust your doctors and follow their directions and I'm sure you will do well. Best of luck to you. Nancy

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I was activated Dec 1. Driving home after activation I heard sirens coming from three directions. Hadn't heard a siren for some years! Kept me out of the intersection I was headed for! Made my family's day – and mine too as possibly other peoples. My reason for deciding to go for the CI was a safety reason. The additional perk was being able to hear the family and friends again and able to use a phone. Truly a blessing. Everyone progresses at a different degree. Some days better than others. A support system, such as this, can make a tremendous difference. All have 'been there' and 'done that'.

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