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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.

grovelander | @grovelander | Mar 10, 2022
In reply to @billchitwood "I was activated Dec 1. Driving home after activation I heard sirens coming from three directions...." + (show)
@billchitwood

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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The first thing I heard on the way home was the directional signal on the car. Who knew it was that loud?
I went with Cochlear America brand of CI based on comments from others in my HLAA chapter and my research: they have a great record for quality and longevity. I have had Meniere's disease for many years, with serious vertigo; since the activation the vertigo is gone! I now can talk easily on the phone and enjoy conversations with friends, though hearing in a group is still a challenge. Still much better than pre-CI.
To anyone considering a Ci: Talk to as many people as you can about their CI experiences, and find an audiologist you trust and feel comfortable with; he/she will be a part of your life from now on.

REPLY
2 replies
Julie Chitwood | @billchitwood | Mar 10, 2022
In reply to @grovelander "The first thing I heard on the way home was the directional signal on the car...." + (show)
@grovelander

The first thing I heard on the way home was the directional signal on the car. Who knew it was that loud?
I went with Cochlear America brand of CI based on comments from others in my HLAA chapter and my research: they have a great record for quality and longevity. I have had Meniere's disease for many years, with serious vertigo; since the activation the vertigo is gone! I now can talk easily on the phone and enjoy conversations with friends, though hearing in a group is still a challenge. Still much better than pre-CI.
To anyone considering a Ci: Talk to as many people as you can about their CI experiences, and find an audiologist you trust and feel comfortable with; he/she will be a part of your life from now on.

Jump to this post

So true on audiologist. And the best surgeon. My recovery was so easy and fast. Two and a half weeks from surgery to activation. I never really even noticed the incision. Healed quickly, no pain and if there was any swelling, which I assume there was, I wasn't aware of it. Stitches took care of themselves! Didn't have to have them removed.

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1 reply
lynn4hearing | @lynn4hearing | Mar 11, 2022
In reply to @grovelander "The first thing I heard on the way home was the directional signal on the car...." + (show)
@grovelander

The first thing I heard on the way home was the directional signal on the car. Who knew it was that loud?
I went with Cochlear America brand of CI based on comments from others in my HLAA chapter and my research: they have a great record for quality and longevity. I have had Meniere's disease for many years, with serious vertigo; since the activation the vertigo is gone! I now can talk easily on the phone and enjoy conversations with friends, though hearing in a group is still a challenge. Still much better than pre-CI.
To anyone considering a Ci: Talk to as many people as you can about their CI experiences, and find an audiologist you trust and feel comfortable with; he/she will be a part of your life from now on.

Jump to this post

I have vertigo issues as well and I'm very nervous about waking from surgery and being dizzy. Sure hope I have your experience and the vertigo is gone after surgery!

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2 replies
grovelander | @grovelander | Mar 11, 2022
In reply to @lynn4hearing "I have vertigo issues as well and I'm very nervous about waking from surgery and being..." + (show)
@lynn4hearing

I have vertigo issues as well and I'm very nervous about waking from surgery and being dizzy. Sure hope I have your experience and the vertigo is gone after surgery!

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How soon is your surgery date? I wish you well and will think positive thoughts for you.

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1 reply
grovelander | @grovelander | Mar 11, 2022
In reply to @billchitwood "So true on audiologist. And the best surgeon. My recovery was so easy and fast. Two..." + (show)
@billchitwood

So true on audiologist. And the best surgeon. My recovery was so easy and fast. Two and a half weeks from surgery to activation. I never really even noticed the incision. Healed quickly, no pain and if there was any swelling, which I assume there was, I wasn't aware of it. Stitches took care of themselves! Didn't have to have them removed.

Jump to this post

My activation was 4 weeks post surgery-- standard practice here in Rochester. Healing was smooth and the swelling went down fairly quickly. Aren't we fortunate to be able to benefit from this amazing technology?!!

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1 reply
Julie Chitwood | @billchitwood | Mar 11, 2022

And one of these days they will figure out how to make those little cochlear guys regenerate themselves! My original audi described them as little hairs that decide to lay down on the job instead of standing upright - and the more that lay down the less you hear. I really wanted to 'zap' the slug-a-beds and get them back on their feet and working!

REPLY
2 replies
lynn4hearing | @lynn4hearing | Mar 11, 2022
In reply to @grovelander "How soon is your surgery date? I wish you well and will think positive thoughts for..." + (show)
@grovelander

How soon is your surgery date? I wish you well and will think positive thoughts for you.

Jump to this post

Early June, Thanks!

REPLY
grovelander | @grovelander | Mar 11, 2022
In reply to @billchitwood "And one of these days they will figure out how to make those little cochlear guys..." + (show)
@billchitwood

And one of these days they will figure out how to make those little cochlear guys regenerate themselves! My original audi described them as little hairs that decide to lay down on the job instead of standing upright - and the more that lay down the less you hear. I really wanted to 'zap' the slug-a-beds and get them back on their feet and working!

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Amen!

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lizzy102 | @lizzy102 | Mar 12, 2022

I love this discussion! Congratulations lynn4hearing! It would be great if you started gathering your training resources now - and learning to use them. After you activate the most important thing you can do is dive right in and start training. Your brain has been lazy, it will soon be time to create new connections and begin your new life. Check out Angel Sounds and Bring Back the Beat. Look at Cochlear Inc. library of word training lists and the ones for Advanced Bionics as well. There is lots out there and if you know the options you’ll be ready to hit the ground running as soon as you’re activated! Good luck, Lizzy

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 12, 2022
In reply to @lizzy102 "I love this discussion! Congratulations lynn4hearing! It would be great if you started gathering your training..." + (show)
@lizzy102

I love this discussion! Congratulations lynn4hearing! It would be great if you started gathering your training resources now - and learning to use them. After you activate the most important thing you can do is dive right in and start training. Your brain has been lazy, it will soon be time to create new connections and begin your new life. Check out Angel Sounds and Bring Back the Beat. Look at Cochlear Inc. library of word training lists and the ones for Advanced Bionics as well. There is lots out there and if you know the options you’ll be ready to hit the ground running as soon as you’re activated! Good luck, Lizzy

Jump to this post

Lizzy, I too love this discussion and am so grateful that you starting journalling your Cochlear implant story that has blossomed into a discussion helping many. Now it is like a kitchen table conversation where everyone shares their experiences, asks questions, gets answers and moves over to make room for new people. Did you ever imagine when you started this that it would help so many?

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