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.

@barbb

Hi Lizzy, it's great all that you have accomplished with your CI! But sorry about those taste bud issues – which I have never heard of. Do you have an detailed explanation from the doctor for why these problems?

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https://www.ncbi.nlm.nih.gov/pubmed/18033736
The above is a good link to why they happen. It is not a rare problem at all, it is just one that folks don’t mention very often. My surgeon says it will get better with time. Could be as long as a year before they do, if they do. I’ll get used to it I’m sure. Would I hesitate to have another implant? No, The implant has made my life so much richer and I am more present to my life now. Thank you for your comment. Your thoughts are much appreciated.

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@joyces

In response to Lizzy 102 and others worried about Covid-19: Avoid all processed/packaged foods. Instead, cook from scratch. I've done this forever, and we never have colds or flu, nor did my kids when they still lived at home. Look at the labels on foods. If the ingredients list is more than the actual food item and contains any chemicals, put it back on the shelf. Stay away from salt, especially in canned foods. You can tell how much salt is present by looking at the sodium content. You only need, at most, 1,200 mg. of salt/day. Cooking from scratch is not necessarily difficult or time consuming. My husband is a brittle diabetic who had a kidney transplant over six years ago. Until he was forced to go on dialysis before the transplant, he sold boats at nine trade shows each winter, with everyone around him coughing, sneezing, etc. I precooked his meals and sent them with him to heat up in the microwave in his hotel room. In spite of working long hours at the shows and driving to/from them, he never had even a sniffle year after year. Although we did all the excess things with hand sanitizer, masks, etc. following the transplant, we stopped doing that after a couple of months and rely on simple hand washing. I prepare everything, using very little salt, sugar, or fat.

Lizzy102, thanks so much for your posts about your CI! It's very helpful for those of use thinking about getting one.

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Wow Joyce! All that you say is incredible! Your story should be published somewhere! I'm thinking you and your family were just born with "health genes"!

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@barbb

Wow Joyce! All that you say is incredible! Your story should be published somewhere! I'm thinking you and your family were just born with "health genes"!

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@barbb: My family has overcome several health issues that could have been far more devastating. As a kid, I had a ruptured appendix, thought it was the flu, went around with peritonitis for almost three months, and then was really, really sick. When I got pregnant, I thought I must have cancer, as I'd been told that I'd never be able to have children. When my father was 64, he took a fall from a ladder, shattered five vertebra in his back, crawled across the street and up onto a porch to ask the people to please call an ambulance. He was a self-employed house painter with zero insurance, so, instead of months in a Stryker frame in the hospital, they slapped him into a cast and sent him home. He was back painting houses a few months later while Sen. Ted Kennedy, who had broken his back the same week, was still having serious problems. My son, born two months early, started having discs in his back degenerate at 15. He's had two removed, but is very active, does back exercises every day and some form of strenuous activity daily, like "walking" five miles during lunch hour. I've fought Meniere's much of my life; thanks to daily VRT I still do instream fish surveys for our state fish agency in a wilderness location–at 77. My daughter, now 50, says that it's taking far too long to recover from a bone graft in her foot as the ortho promised she'd be playing soccer again this spring, but she still needs more PT work over a year after the surgery. Bunch of tough shanty Irish!
My husband, on the other hand, is hopeless. He had one disc surgery 11 years ago, flatly refuses to do PT or any exercise and is in terrible shape. He felt much better, was less cranky, a couple of years ago when I drove him two hours each way to biweekly PT. The PT gal finally gave up because he refused to do work at home, and he's far, far worse and in serious pain–but insists that he can't do anything because (whine) "it hurts." AARGH! Now he splits his time between his damned recliner and the couch, reading, watching TV, all day every day. I still have a few graphics clients, do all the housework plus all the outside work to keep the house and acreage in shape. I'm too lazy to cut and split enough wood to heat entirely with the Earth stove, but I do provide enough to have a good fire every morning to start the day off with a cozy warm house with less reliance on the backup electric heat.

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Time for an update. I just changed the dry brick in my instrument dryer, so I know it’s been about two months.
How things have changed! In this Covid-19 world, we are living in our 28’ RV. We got the house on the market and it sold in four days – we’re just waiting for closing now. We had planned to go west to the family and to find a new home. All of that is put on hold since RV travel is restricted by private and state campground closures. With my kidney transplant, I’m vulnerable and our ages put us in that category anyway!
I am SO GRATEFUL I had a cochlear implant! Beyond grateful. Without the incredible improvement in hearing, isolation would be torture for me. I talk on Zoom with family and friends, big groups of us. Barb and I have started the Mindfulness based meditation, MSBR, eight week class. I meditate with my eyes closed, listening to someone guide me through.
Barb complains that I talk so softly now she can’t hear me! I am still doing aural rehabilitation – even though my university based cochlear audiologist is no longer working.
With hope, things will return to ‘normal’ in the next year or so. With hope, we will all be here to comment and connect. With hope you are finding good in your situation. Hang in there, y’all.

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@lizzy102

Time for an update. I just changed the dry brick in my instrument dryer, so I know it’s been about two months.
How things have changed! In this Covid-19 world, we are living in our 28’ RV. We got the house on the market and it sold in four days – we’re just waiting for closing now. We had planned to go west to the family and to find a new home. All of that is put on hold since RV travel is restricted by private and state campground closures. With my kidney transplant, I’m vulnerable and our ages put us in that category anyway!
I am SO GRATEFUL I had a cochlear implant! Beyond grateful. Without the incredible improvement in hearing, isolation would be torture for me. I talk on Zoom with family and friends, big groups of us. Barb and I have started the Mindfulness based meditation, MSBR, eight week class. I meditate with my eyes closed, listening to someone guide me through.
Barb complains that I talk so softly now she can’t hear me! I am still doing aural rehabilitation – even though my university based cochlear audiologist is no longer working.
With hope, things will return to ‘normal’ in the next year or so. With hope, we will all be here to comment and connect. With hope you are finding good in your situation. Hang in there, y’all.

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@lizzy102 I was remiss in joining this conversation until now but I have just read through all of it. I want to thank you for journaling your whole experience so well. It's exactly what a person who is considering a CI needs — the pros and the cons. I know I will refer back to it if/when the time comes that I do qualify for a CI.

I am not quite to the point where I qualify for a CI but I know I am not too far from it. My hearing has degraded quite a bit in the last few years and my word recognition has really decreased. This seems to have happened since I had a liver transplant in 09.2016. I have read that there is some possibility that those things could be related – hearing loss and immunosuppressants. If so it's not a common side-effect but a less frequent one. It can be very discouraging and depressing to be in a group and not understand much at all of what is being said, even when speaking directly to one individual. The background noise intrudes too much. My family, particularly my son, try to accommodate my loss, and the couple we spend most of our social time with are very accommodating. She, coincidentally, had a deaf aunt and was a teacher of deaf children so they both have dealt with hearing loss.

I know that you cannot wear a CI in the water. I go to water aerobic classes regularly and wear my hearing aids — my head remains above water, but there have been a couple of occasions when I slipped and my hearing aids were briefly submerged. They were not damaged by that brief submersion. Would that be so also for a CI?
Thanks again for such an informative journal of your experiences.
JK

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I am a CI candidate but my drs at Penn listened to me- I have a love for music and CI tinnified music – delayed till this year( delayed by me – no $ to cover 20 percent) – vast improvements in being better for music
Both Advanced Bionics and Cohlear have it being waterproof- with add ins. ( ? Or not). It is waterproof though FYI Why it is extremely upsetting about the HLLA convention being cancelled – was going to really find out about $ help. My level of socialization ( very little – less so with the horror) means I cann get away with my aids( 15 and 13 years old! )
This site has some added information I never before and it concerns – taste buds being impacted . It took me a long time to be a foodie – shocked a lot of folks that knew me in my young days. I am still not a great eater when home- one – two meal/ eats a day. I did though on a whim answered a ad for grab and go meals for meals. I qualified- every 6 days get food delivered.
I learned from my former HLAA chapter president how important Roger pen type component has help in directional mike type thing for doing away background noises . Pocket talker does help too … lesser degree .
Sorry for long bit Take care. Feel free to ask for more information or adds on – this mayo sites have been helpful- real folks dealing with things day to day

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@bookysue

I am a CI candidate but my drs at Penn listened to me- I have a love for music and CI tinnified music – delayed till this year( delayed by me – no $ to cover 20 percent) – vast improvements in being better for music
Both Advanced Bionics and Cohlear have it being waterproof- with add ins. ( ? Or not). It is waterproof though FYI Why it is extremely upsetting about the HLLA convention being cancelled – was going to really find out about $ help. My level of socialization ( very little – less so with the horror) means I cann get away with my aids( 15 and 13 years old! )
This site has some added information I never before and it concerns – taste buds being impacted . It took me a long time to be a foodie – shocked a lot of folks that knew me in my young days. I am still not a great eater when home- one – two meal/ eats a day. I did though on a whim answered a ad for grab and go meals for meals. I qualified- every 6 days get food delivered.
I learned from my former HLAA chapter president how important Roger pen type component has help in directional mike type thing for doing away background noises . Pocket talker does help too … lesser degree .
Sorry for long bit Take care. Feel free to ask for more information or adds on – this mayo sites have been helpful- real folks dealing with things day to day

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@bookysue I have never been to an HLAA convention but had been considering going. Has it been postponed or totally canceled?

My audiologist gave me Phoanks and the other Roger accessory that you can put on a table to hear other people in the room. This would be great I think for people in a work situation sitting around a conference table but for me, using it on my coffee table at home while my family was here, it did no good thanks to the underlying noise, nor did it help in a restaurant.

I have Oticon Opn1 HAs. When I got them, 3 years ago, they were supposed to be the best for clarity. I have the Connect Clip that goes with them and one person can put it on. That really does help to hear the person who is wearing it. I go to a water aerobics class where the leader is not in the pool so she wears it. Without her wearing it I would never be able to hear her.
JK

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@contentandwell

@bookysue I have never been to an HLAA convention but had been considering going. Has it been postponed or totally canceled?

My audiologist gave me Phoanks and the other Roger accessory that you can put on a table to hear other people in the room. This would be great I think for people in a work situation sitting around a conference table but for me, using it on my coffee table at home while my family was here, it did no good thanks to the underlying noise, nor did it help in a restaurant.

I have Oticon Opn1 HAs. When I got them, 3 years ago, they were supposed to be the best for clarity. I have the Connect Clip that goes with them and one person can put it on. That really does help to hear the person who is wearing it. I go to a water aerobics class where the leader is not in the pool so she wears it. Without her wearing it I would never be able to hear her.
JK

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Convention cancelled- news came Friday – sad

Never use aids in pool- just behind folks- lipread. Interesting mishaps – but I make humor is part of my conversation.
White water rafting without aids- was an interesting but hard situation and I was on the level whereas I should not not have been- advanced High level- Fun never-less – lost my shirt literally –
As for Connect clip- should work with family- setting check up with your audiologists if you can. . I had to be creative thinker- my t coil helps in restaurants with tv. I know – I told my former audiologist this years ago- fascinating to her- but it has helped .
Check and see if there is an HLAA chapter in your area- very worthwhile group. Or maybe a bunch of you can set one up-

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I'm a strong proponent of the add on BlueTooth devices that work with the Cochlear N6 and N7, and also work with ReSound hearing aids that have been available since the N6 processor from Cochlear. I don't use the TV streamer because I've adjusted to captions…and also hear quite well with my CI and HA together and don't need it. It's the mini-mic and the mini-mic 2+ that I rate as 'excellent', especially in social settings where background noise exists. No, the devices do not totally block out background noise, but they sure help. It's important for those of us who use assistive technology to understand that the distance between the personal hearing device and the microphone from any broadcasting device will always affect the speech to noise ratio. (SNR) If you're in a small group around a small table it generally works well when set on the table. One on one, it's perfect. Three is a good number because two conversations cannot be going on at the same time. Add one more and that happens. We have to be able to explain that creates problems for us. It seems to happen often with couples. The men have a conversation and the women start their own. I may be listening to the men's conversation when the other woman starts another. She can listen to them and talk at the same time. I can't. I have to remind her of that. Also remind her/them that when this happens I try so hard to hear that I get exhausted quickly and may tune out completely. We have all been in these situations. If you are able to explain this and are with supportive people, ask them to pass the mike, and only talk one at a time. It helps. All of these assistive devices are based on microphones transmitting information directly to our personal devices (CI or HA) whether they are BT , hearing loops (induction technology), infrared or FM systems. That speech to noise ration thing is the key to the success of all of them. For the best result, the mike shouldn't be more than 6 inches away from the person who is speaking. Now we have a dilemma with the COVID-19 issue. How contaminated will that microphone get? And when everyone has masks on will we hear anything anyone says anyway. This issue is going to affect the hard of hearing population greatly. I'm interested to know how you will overcome this?

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@bookysue

Convention cancelled- news came Friday – sad

Never use aids in pool- just behind folks- lipread. Interesting mishaps – but I make humor is part of my conversation.
White water rafting without aids- was an interesting but hard situation and I was on the level whereas I should not not have been- advanced High level- Fun never-less – lost my shirt literally –
As for Connect clip- should work with family- setting check up with your audiologists if you can. . I had to be creative thinker- my t coil helps in restaurants with tv. I know – I told my former audiologist this years ago- fascinating to her- but it has helped .
Check and see if there is an HLAA chapter in your area- very worthwhile group. Or maybe a bunch of you can set one up-

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@bookysue my HAs never never gets submerged intentionally. I have slipped two times and my HAs got wet but they recovered immediately. Many hearing aids are fine with that.

There are no HLAA chapters within an hour of me. The closest has meetings at night. If they was during the day I would consider going but not at night.
JK

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