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.

Court Reporter – I'm sorry.

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We were still traveling home when I found out I could get an appointment for a Cochlear Implant evaluation at University of South Alabama at the Speech and Hearing Clinic. The appointment was with Dr. Wilder Roberts. I knew we wouldn't be able to make the distance in time, so I flew home for the appointment.
Meeting with Dr. Roberts and her staff started off with lots of questions before the tests in THE BOOTH. Questions concerning situations that are hard for me to understand in, what about when I can't see someone? Crowds? Groups? Did I ever feel unsafe (all the time unless I have a hearing person nearby)? And more. Dr. Wilder explained the test I'd have in the booth. They would play three different voices speaking simple sentences at normal speaking speed. I would just repeat what I understood. Well, to me that sounded daunting – the word PLAY tipped me off that I wouldn't be speaking with someone. Into the booth I walked, hearing aids on and sat down in a chair placed a couple feet in front of a good sized stereo speaker – only it was mono.
The voices began. I repeated the occasional word but spent most of the time muttering to myself – 'if the speakers would slow down…'if the one guy would speak more clearly…' I tried and tried to understand. The test went by quickly, I thought. Suffice it to say, I didn't do so well. I have .1% of understanding in one ear and .4% in the other.
Dr. Wilder got out the kit with processor colors and we looked over the equipment. I had already done tons of research and talked to other CI recipients and had decided that the Cochlear America equipment was for me (if anyone is curious, I'll be glad to share my research and reasoning). That over-the-ear-processor is sure big! I asked for the smaller processor, Kanso, as well – even though it doesn't have all the bells and whistles as the larger. We discussed accessories – the swimming covers for the OTE processor, a mic, a streamer for the Kanso. Then we discussed surgeons. Most everybody was booked for months ahead – I felt strongly about going to a surgeon who had done a LOT of implants.
Barb and I work for an RV Caravan company – we are scheduled to meet a new group in Maine to make a 59 day trip through Canada's Maritime provinces in July. I really need to have the surgery and activation as soon as possible so that I can be doing aural rehab for a while before being confronted with hugely challenging situations.
Dr. Wilder had worked with Dr. Blythe in Opelika, AL for some time and very much respects him. She sent the referral and we waited to 'hear' from the East Alabama Ear, Nose and Throat Clinic.

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@lizzy102

We were still traveling home when I found out I could get an appointment for a Cochlear Implant evaluation at University of South Alabama at the Speech and Hearing Clinic. The appointment was with Dr. Wilder Roberts. I knew we wouldn't be able to make the distance in time, so I flew home for the appointment.
Meeting with Dr. Roberts and her staff started off with lots of questions before the tests in THE BOOTH. Questions concerning situations that are hard for me to understand in, what about when I can't see someone? Crowds? Groups? Did I ever feel unsafe (all the time unless I have a hearing person nearby)? And more. Dr. Wilder explained the test I'd have in the booth. They would play three different voices speaking simple sentences at normal speaking speed. I would just repeat what I understood. Well, to me that sounded daunting – the word PLAY tipped me off that I wouldn't be speaking with someone. Into the booth I walked, hearing aids on and sat down in a chair placed a couple feet in front of a good sized stereo speaker – only it was mono.
The voices began. I repeated the occasional word but spent most of the time muttering to myself – 'if the speakers would slow down…'if the one guy would speak more clearly…' I tried and tried to understand. The test went by quickly, I thought. Suffice it to say, I didn't do so well. I have .1% of understanding in one ear and .4% in the other.
Dr. Wilder got out the kit with processor colors and we looked over the equipment. I had already done tons of research and talked to other CI recipients and had decided that the Cochlear America equipment was for me (if anyone is curious, I'll be glad to share my research and reasoning). That over-the-ear-processor is sure big! I asked for the smaller processor, Kanso, as well – even though it doesn't have all the bells and whistles as the larger. We discussed accessories – the swimming covers for the OTE processor, a mic, a streamer for the Kanso. Then we discussed surgeons. Most everybody was booked for months ahead – I felt strongly about going to a surgeon who had done a LOT of implants.
Barb and I work for an RV Caravan company – we are scheduled to meet a new group in Maine to make a 59 day trip through Canada's Maritime provinces in July. I really need to have the surgery and activation as soon as possible so that I can be doing aural rehab for a while before being confronted with hugely challenging situations.
Dr. Wilder had worked with Dr. Blythe in Opelika, AL for some time and very much respects him. She sent the referral and we waited to 'hear' from the East Alabama Ear, Nose and Throat Clinic.

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lizzy102, thanks for sharing this experience. I am not a candidate for a CI yet, so am interested in your reasoning for choosing Cochlear America over Advanced Bionics and Med-El.
Tony in Michigan

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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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Really good info! I'm so new to this new level of not hearing that I wasn't aware of the different companies, nor had I even thought about the various add-ons that might help.I was tested recently for a CI, but failed with a 55% score. The 55% is due to having some hearing with increasing age-related deafness in one ear with almost none in the other for over 30 years, until Meniere's disease moved in to my "sorta" hearing ear last May. My problem isn't hearing as much as severe distortion: I know that someone is speaking, but I cannot understand more than occasional words. I've thrown lots of $$ at the problem, but haven't yet found a way to understand during small meetings, not even around a round table for 10, or even in a small group of three or four. I'm okay during lectures as long as I sit in the front row right (only hearing is on my left side) with a small mic to help pick up what the person is saying–as long as they stay near the podium. I'm totally lost if they move to the other half of the front of the room, or, much worse, walk back into the audience.

I've found that some of the things I've bought don't work at all, others only work in some situations, so I often sit without being able to follow what's being spoken. I live in a very rural area where I've yet to find a meeting room with an induction loop, and even WiFi is hard to find. I'm currently looking for a meeting place for the lecture series I'm part of, so it's a great opportunity to see if there are any places that might be easier (even if they're out of the price range the group is willing to pay). For example, a workgroup about water availability I chair meets in a place where WiFi is only available to college students involved in the marine program, so the android phone I bought to use Live Transcribe doesn't work there. Before our January meeting, I'll try making a case to someone in charge–which, of course, will mean dealing with the telephone. I did try an IPhone initially, but found that our in-house WiFi (no cell reception whatsoever) isn't strong enough to work, either for me or for the person I'm trying to communicate with. There should be a mic like the directional one that pairs with Phonak aids, but I haven't found one. I'm not ready to invest in even one Phonak plus another thousand for the directional mic.

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Thank you for posting your thoughts, Joyces. I empathize. When I met with Dr. Terry in Albuquerque she told me the truth, at last. She said that hearing aids would not help me anymore. I've also spent thousands on technology trying to find ways to increase my discrimination / understanding of what folks are saying. Even my current incredible hearing aids only amplify what my brain 'hears' as word soup. One thing that does help me is to rest before meetings, to meditate is even better – 10 minutes of silent focus on my breath set me up fo understanding at the best that my body is capable. Sheri Eberts -https://livingwithhearingloss.com/2019/05/07/seven-ways-you-can-make-life-easier-for-someone-with-hearing-loss/ has a column that is very good. She's addressed many of the issues you bring up. I consider her a very good source of information. Best, Liz

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@lizzy102

Thank you for posting your thoughts, Joyces. I empathize. When I met with Dr. Terry in Albuquerque she told me the truth, at last. She said that hearing aids would not help me anymore. I've also spent thousands on technology trying to find ways to increase my discrimination / understanding of what folks are saying. Even my current incredible hearing aids only amplify what my brain 'hears' as word soup. One thing that does help me is to rest before meetings, to meditate is even better – 10 minutes of silent focus on my breath set me up fo understanding at the best that my body is capable. Sheri Eberts -https://livingwithhearingloss.com/2019/05/07/seven-ways-you-can-make-life-easier-for-someone-with-hearing-loss/ has a column that is very good. She's addressed many of the issues you bring up. I consider her a very good source of information. Best, Liz

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@lizzy102 thanks for sharing. I have unilateral hearing loss recently and ENT told me today that my ear is not aidable because word recognition is horribly poor. I am not sure CROS hearing aid would help. Cochlear implant is another option. I don't even know how to start the research, where to find the CI recipients and learn from their experience. I would love to hear more about your journey. Let us know how it goes. Are you doing both ears or one?

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@btpanda

@lizzy102 thanks for sharing. I have unilateral hearing loss recently and ENT told me today that my ear is not aidable because word recognition is horribly poor. I am not sure CROS hearing aid would help. Cochlear implant is another option. I don't even know how to start the research, where to find the CI recipients and learn from their experience. I would love to hear more about your journey. Let us know how it goes. Are you doing both ears or one?

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btpanda, you can find unbiased help on cochlear implants here: https://cochlearimplanthelp.com/
Tony in Michigan

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Btpanda, I was just sitting down to add to this journal when I read your post. Thank you for reading!
I started my cochlear research a few years ago. I didn’t know then about how much in implant could help me, I didn’t even know I was eligible. I’ve been ‘involved’ with the medical community since I was diagnosed with Glomerulonephritis (from a strep infection I had as a child). After that diagnosis, I went to the nearest medical school library and dug through anything I could read about the disease. From that point I have become an extremely well informed ‘patient’.
Initially, I wanted to know what people with CIs said about the experience. There are lots of online and YouTube stories told in the first person by CI recipients. I also talked to anyone who had a minute to share their story. Somewhere in that time, I stopped feeling that CIs are disfiguring. The stories folks told about learning to hear and how their brains somehow learned to translate the electrical stimulation in the cochlea into recognizable speech, it is inspiring to hear.
I also looked at the dangers of the surgery. A certain small number of implants are not successful and I wanted to make sure I was not one of them. Since I needed to have two kidney transplants and faced the risks of those surgeries, the CI risks paled in comparison. One thing I learned is that the surgeon is super important. They need to have performed many many CIs building an impressive skill level. I found it important that the surgeon take pains to see me as a person, to know what I hope the CI will do for me.
I also looked at each of the provider companies. First at their longevity in the business, their financial stability, reputation and customer reviews. I also assessed the support the companies offer. Since I travel so much, I looked for a company that would work with me no matter where I am, should one of my processors have a problem. It’s important to me that if I need an adjustment, there will be a lot of audiologists around who have worked with my CI company and know the processors.
But now, I need to get my journal updated!
Best, Lizzy

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After the appointment was set, I couldn’t resist revisiting some of my research. I had made the decision to go for a Cochlear Inc. implant and for some reason I began second-guessing my decision.
So, back to the internet. One of my favorite sites: https://www.fda.gov/medical-devices/cochlear-implants/benefits-and-risks-cochlear-implants takes a hard look at CI and gives information about what to expect. I went back to risks and recognized that some of my decisions to choose Cochlear Inc. addressed the very risks listed. For example: won’t be able to swim or shower – I chose a waterproof case for my processor as one of my accessories. I haven’t trusted swimming for years, being so deaf I wouldn’t have known that someone needed me out of the pool or ocean. Another concern, that the company may go out of business, by looking up the financial health of Cochlear Inc. that worry disappeared, this is a long running, healthy company. Dependence on batteries is another worry – well, right now I’m dependent on batteries for my HAs, I have them in all of our vehicles, in all of my backpacks and my purse, in the pockets of several outdoors jackets, in drawers in the front of the house and the back, it’s pretty funny. Also the idea that I’ll have to use processors for the rest of my life isn’t disturbing because I wear not super helpful HAs now and there is no end in sight to that scenario, the only difference is that with the CI I have a chance of improved understanding and engagement with my world. I’m not worried about upgrades because the company does upgrade processors and the current implant is going to be effective for a long time yet – or so I have been assured. Another big concern for me was that at some point I may need an MRI – the implant I’ve chosen is one that is technologically capable of being in MRI.
Then came appointment day. We drove up to Opelika the day before (3 hour drive one way) so I could rest and be at my hearing best when I met with Dr. Blythe the next morning.
Let me tell you, the appointment was a big surprise to me! I went into the room and right away turned the exam chair around facing away from a very bright octagonal window, looked over the seating in the room and decided where I would sit. I don’t mind telling folks how to speak with me – especially doctors, it’s important I understand as much as possible (Barb helps with the rest).
Dr. Blythe came into the room, worked at turning the chair back around and proceeded to wash his hands (facing away from me) and talk. I immediately protested! Nope, that didn’t work at all, he ignored me. He told me to sit in the exam chair. I explained I wouldn’t understand him and he commanded me to sit! YIPES. So I sat, he looked in my ears and cleaned out the sebum while moving my head around roughly. I looked at Barb and mouthed “No WAY!” I did not like this guy.
He had me sit down in the chair I’d chosen earlier and began to ask questions. I had to again ask that he slow his speech and speak more clearly. He replied that he was speaking at normal speed in a normal voice and that the problem wasn’t what he was doing but that I do not hear. I thought “Wow that’s a news flash!” I thought.
Suddenly, Dr. Blythe’s brusque demeanor completely changed. He said that he can look at audiograms, “AC Bio” and “Hint” tests all day long and not get any sense of how an individual functions in the real world. The whole beginning of the session was a test of my functioning and how much Barb helps me. He changed the way he was speaking which helped me understand more and explained the surgery, risks and recovery process. By the end of the session, I had completely changed my mind! Though I’ll only see Dr. Blythe twice, I know he’s the surgeon for me. The office scheduled my surgery – January 16.
We went to lunch and drove back home to await surgery. I’m not sitting on my laurels here though. I received an invitation to a cochlear community meeting in a nearby city and sent an RSVP to attend both the meeting and an open house. I’ll let you know what I learn at the meeting.

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Quite the story you have here. It is not clear to me what you think caused the reversal in his obnoxious attitude???

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Here are a couple more websites I used: This is a scholarly article and requires a bit of a wade through and is full of information about CIs, the companies that offer them, history, evaluation etc. https://www.asha.org/policy/TR2004-00041/
https”//www.cici.org is the Cochlear Implant Association.
All of the manufacturers offer support meetings for those seeking information and those with current implant experience.

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@lizzy102, wow, what a story. Can't wait to hear more in your next cheaper. Best wishes for your surgery!

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@barbb

Quite the story you have here. It is not clear to me what you think caused the reversal in his obnoxious attitude???

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He was testing my functioning in the real world – speaking as if he were addressing a hearing person. The attitude, I think, is part of the test. I think he doesn’t want to do a CI on someone unless it is necessary – no matter what the tests say.

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Did he say that's what he was doing or is that your surmise? Of course he could say that's what he was doing rather than treat you in an offensive manner!

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