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.

@lizzy102

I had a fun meeting with some other CI folks the other day, I told my tale of the meeting with the surgeon and guess what? Both of the people I was speaking with thought their surgeons were ‘jerks’. We all realized that the surgeon is the last gate keeper to make an assessment. I respect the surgeon now, for his experience and caring.
I’m two days from surgery and have anticipatory nerves. Step by step I am moving forward toward better hearing and understanding.

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@lizzy102, anticipatory nerves for a CI implant is normal. You're right to taking everything step by step and coax your mind back to the present instead of letting it wander to fabricated "what if's."
I'm bringing in some other CI members to share their support and experiences, like @katherinebouton @edschickel @joee @hlaasdan @dstell @angus @julieo4 @christinahaire

Lizzy, trust your decision. You did a lot of research and questioning that you can rely on. What last minute questions or concerns would you like to share?

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@colleenyoung

@lizzy102, anticipatory nerves for a CI implant is normal. You're right to taking everything step by step and coax your mind back to the present instead of letting it wander to fabricated "what if's."
I'm bringing in some other CI members to share their support and experiences, like @katherinebouton @edschickel @joee @hlaasdan @dstell @angus @julieo4 @christinahaire

Lizzy, trust your decision. You did a lot of research and questioning that you can rely on. What last minute questions or concerns would you like to share?

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I woke up this morning tingly, giggly and filled with joy. The wait for the first step toward understanding and hearing was so difficult for me! Per other CI recipient stories, I’m in for an even more excruciating wait in the next two weeks until my activation appointment. I am certain the decision I made is the correct one – the joy tells me so.
Last minute? What are the odds I’ll have to stay overnight at the hospital?
Has anyone had a CI and NOT come out of it with balance problems and dizziness?
How do I best handle the days right after surgery?
Thank you, in advance, for any guidance.

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@lizzy102

I woke up this morning tingly, giggly and filled with joy. The wait for the first step toward understanding and hearing was so difficult for me! Per other CI recipient stories, I’m in for an even more excruciating wait in the next two weeks until my activation appointment. I am certain the decision I made is the correct one – the joy tells me so.
Last minute? What are the odds I’ll have to stay overnight at the hospital?
Has anyone had a CI and NOT come out of it with balance problems and dizziness?
How do I best handle the days right after surgery?
Thank you, in advance, for any guidance.

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Surgery was today! It went just great! My surgeon was a peach and the staff very caring. I popped out of anesthesia with no dizziness or other issues. Pain is manageable. I do have a grapefruit sized bowl over my ear that has 4 x 4 dressings in it.Got a little bruising and my neck is sore from my head being turned on the side.I don’t notice an increase in tinnitus at this time.
Thoughts about “How to get ready for your surgery”.
Do neck stretches – looking over your shoulder with your shoulders down and back, for a couple weeks before the dare.
Eat extra protein before surgery and bring some for the evening after. I did protein drinks and ate my usual healthy diet.
Bring socks.
Bring your positive attitude.
Bring Gatorade or a better electrolyte replacer for after surgery, hospital gave it to me and I had some in the hotel room.
Questions?
Thoughts?

REPLY
@lizzy102

Surgery was today! It went just great! My surgeon was a peach and the staff very caring. I popped out of anesthesia with no dizziness or other issues. Pain is manageable. I do have a grapefruit sized bowl over my ear that has 4 x 4 dressings in it.Got a little bruising and my neck is sore from my head being turned on the side.I don’t notice an increase in tinnitus at this time.
Thoughts about “How to get ready for your surgery”.
Do neck stretches – looking over your shoulder with your shoulders down and back, for a couple weeks before the dare.
Eat extra protein before surgery and bring some for the evening after. I did protein drinks and ate my usual healthy diet.
Bring socks.
Bring your positive attitude.
Bring Gatorade or a better electrolyte replacer for after surgery, hospital gave it to me and I had some in the hotel room.
Questions?
Thoughts?

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Experienced some balance issues this morning but they have resolved. So far so good. I wear the protective gear for one more day then get to wash my hair – joy! Incision is not “little” it runs along the back of my whole ear. It is healing nicely and pain is still minimal, for me. Nobody mentioned that the muscles in my neck would be so sore! I’m using Bio-Freeze on it and Arnica Cream on the bruising. Will upload photos this afternoon.

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@lizzy102

Court Reporter – I'm sorry.

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Iizzy102, I would like permission to post your journal directly onto our website, http://www.hearinglosskentucky.org . We currently have one CI Journal posted there. Your journal would give another view. Our website has over 2000 real person visits each month. Please contact me. Thanks

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@lizzy102

Hi Tony, I have three main reasons for choosing Cochlear America. The company has the longest track record, about 40 years since the original owner pioneered the implant procedure. They also provide a LOT of support: from the first contact – they offer mentors and meet-ups to the time you make your decision and go for the implant to activation and the enormous amount of support they offer for learning to hear and understand again. The other companies did not answer when I reached out. I really liked feeling like one of a community.
Also, I had spoken to a CI recipient who chose one of the other implants and was very unhappy. He had moved to a different state and there was no audiologist nearby that worked with that particular implant, he needed adjustment and was very unhappy. Because I travel so much, I need to be able to find providers easily.
Third, I use Resound HAs and am going for a Hybrid Hearing solution to my discrimination problems – Cochlear and Resound are partners so my remaining HA will work perfectly with the CI processors. I’m accustomed to using my iPhone and the Resound app to manage my HAs – the app for the CI isn’t much different and will work seamlessly with my HAs.
I also appreciatthe accessories that Cochlear offers. I’m getting the swim cover for my main processor, the second processor – the Kanso, the mic (I have one but it’s been in near continuous use since I got it), and the phone streamer for the Kanso and my audiologist ordered an extra battery – I’ll have three.
I hope this answers your question, Tony.
Liz

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I chose Advance Bionics for very similar reasons. I liked the idea of the T-mic and I liked the ability to pair with my Phonak hearing aid. I participated in 4 research projects with AB and learned more about how and why of the costs of implants and aids.

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@edschickel

I chose Advance Bionics for very similar reasons. I liked the idea of the T-mic and I liked the ability to pair with my Phonak hearing aid. I participated in 4 research projects with AB and learned more about how and why of the costs of implants and aids.

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Wow, Ed, I would have loved that!

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@edschickel

Iizzy102, I would like permission to post your journal directly onto our website, http://www.hearinglosskentucky.org . We currently have one CI Journal posted there. Your journal would give another view. Our website has over 2000 real person visits each month. Please contact me. Thanks

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Hi Ed. I would gladly share my journal with your HLAA readers. I have a version that is a little more fleshed out and am happy to email that directly to you, if you would like. I liked the CI journal you have going on your site. Let me know how I can help!

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@lizzy102

Experienced some balance issues this morning but they have resolved. So far so good. I wear the protective gear for one more day then get to wash my hair – joy! Incision is not “little” it runs along the back of my whole ear. It is healing nicely and pain is still minimal, for me. Nobody mentioned that the muscles in my neck would be so sore! I’m using Bio-Freeze on it and Arnica Cream on the bruising. Will upload photos this afternoon.

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Jan 25. I'm driving, running errands, picking up materials, doing yard work (trying not to lift over 10-20#), cooking and trying to hold up my piece of the sky!
This is a unique situation, I'm sure. We are in the midst of preparing our house for sale and packing up our things. Today, I realized that having the surgery and expecting to recover quickly enough to get on with the work I need to do is CRAZY! Yipes. There are four weeks left until we "go live" with the house on the market – crossing my fingers.
I'm still in pain. My surgeon says it's likely because they have to use 'packing' in there and use a gel that absorbs back into the body – and because it is major surgery, tiny surgery but still significant. The pain feels like a terrible case of swimmers ear with someone intermittently poking that area with an ice pick. I do not like it. Pain meds knock it back though and I do not like that either.
I realize I may have somewhat unrealistic expectations for post-surgery recovery. I've had two kidney transplants, a parathyroidectomy and an upper eyelid/forehead lift (to correct and give me back my peripheral vision). I was off pain meds within the first 4 days with all of them. Counting the days until pain goes away.
Did I already mention that my taste buds are affected? Apparently those nerves are close to the facial nerve. My surgeon prefers to lean over toward taste buds and away from that facial nerve. Thank you, Dr. Blythe! My taste buds will grow back and I'll be okay again. That's one thing I don't need to worry about!
A good thing is that when I put my right HA into my ear, looks like I have some some residual hearing there, I heard the start-up beeps! That will help with aural rehab.
We met with my audiologist on the 23rd. and got a lot of reassurance. Looks like we will activate early. My audiologist wants to start with the smaller processor, the Kanso. She'll activate that one and then the OTE processor. I am so excited. Since I've been disappointed about post-surgery recovery, I am hoping madly that I won't be disappointed when we activate.
I'm working to get MyCochlear account going so that I'll have individualized attention from Cochlear should the need arise. I'll have access to the Cochlear Rehab site. Likely, I'll use the Advance Bionics and Med-El rehab sites and Angel Sounds. Anything that will shoot my rehab to the stars! I want so badly to be able to understand my family, especially my four grandchildren.
If you're reading along here, please let me know. I would love to know you're out there. Nobody around me is HoH or ever needed to even think of something like a CI. Sometimes I feel a little isolated.
Thanks for reading.

REPLY
@lizzy102

Jan 25. I'm driving, running errands, picking up materials, doing yard work (trying not to lift over 10-20#), cooking and trying to hold up my piece of the sky!
This is a unique situation, I'm sure. We are in the midst of preparing our house for sale and packing up our things. Today, I realized that having the surgery and expecting to recover quickly enough to get on with the work I need to do is CRAZY! Yipes. There are four weeks left until we "go live" with the house on the market – crossing my fingers.
I'm still in pain. My surgeon says it's likely because they have to use 'packing' in there and use a gel that absorbs back into the body – and because it is major surgery, tiny surgery but still significant. The pain feels like a terrible case of swimmers ear with someone intermittently poking that area with an ice pick. I do not like it. Pain meds knock it back though and I do not like that either.
I realize I may have somewhat unrealistic expectations for post-surgery recovery. I've had two kidney transplants, a parathyroidectomy and an upper eyelid/forehead lift (to correct and give me back my peripheral vision). I was off pain meds within the first 4 days with all of them. Counting the days until pain goes away.
Did I already mention that my taste buds are affected? Apparently those nerves are close to the facial nerve. My surgeon prefers to lean over toward taste buds and away from that facial nerve. Thank you, Dr. Blythe! My taste buds will grow back and I'll be okay again. That's one thing I don't need to worry about!
A good thing is that when I put my right HA into my ear, looks like I have some some residual hearing there, I heard the start-up beeps! That will help with aural rehab.
We met with my audiologist on the 23rd. and got a lot of reassurance. Looks like we will activate early. My audiologist wants to start with the smaller processor, the Kanso. She'll activate that one and then the OTE processor. I am so excited. Since I've been disappointed about post-surgery recovery, I am hoping madly that I won't be disappointed when we activate.
I'm working to get MyCochlear account going so that I'll have individualized attention from Cochlear should the need arise. I'll have access to the Cochlear Rehab site. Likely, I'll use the Advance Bionics and Med-El rehab sites and Angel Sounds. Anything that will shoot my rehab to the stars! I want so badly to be able to understand my family, especially my four grandchildren.
If you're reading along here, please let me know. I would love to know you're out there. Nobody around me is HoH or ever needed to even think of something like a CI. Sometimes I feel a little isolated.
Thanks for reading.

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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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