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.

@contentandwell

@bookysue Thanks for the reminder, I will check into that when we are able to come out of isolation.

@julie04 Sometimes when we go out to dinner with the couple we most often do that with, I forget my Connect Clip. The other husband has a booming voice and if the other wife and I are trying to talk it is impossible for me. That can be true even when I have remembered to bring my Connect Clip.
As I have mentioned, they are very supportive and understanding, but not everyone is. My sister feels terrible about my hearing loss but at one point when she and I were in the back seat of the car I asked her to wear the Connect Clip. She didn't want to!
JK

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We are very good friends with a couple we enjoy going out with. However, the lady of the couple is a constant talker. It always seems to start off with a group discussion that gets interrupted when she wants to interject something. The men keep talking and she continues to elaborate on her point of view. It's so expected that it's almost comical. What's really hard for me is that she can talk to me and listen to the other conversation and interject in that too. My head feels like it needs to be on a swivel to keep up with it all. I do remind her/them that this is extremely stressful for me, along with being exhausting. Can we please just have one conversation?? Thankfully, we are good friends and they 'hear me', but it doesn't stop it from happening. Tuning out always feels unfriendly and disrespectful, but sometimes I cannot help it. I always use my accessory microphone, which works well for the most part, but this kind of situation is a big challenge. Just saying. 🙂 Anyone who has hearing loss will understand this, but others don't. It helps to talk about it. That's what we learn from others who get it, and why I've always loved SHHH/HLAA.

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@bookysue

There is a book call Deaf Sense by David Losge- the book is a novel but the author was on dead on That I found out he has a loss. Hearing and not so hearing spouse. It is awesome . Really strange and I feel uncomfortable admitting this . But then I am not a people person . I have little patience for certain types hearing losses - I should be more patient but I have a really hard time understanding and hearing certain folks with certain sound .
And folks- now day; the last two weeks; Masks. Omg. Big part of my hearing is lip reading and I cannot hear the bank people etc- it is hard. I am trying to get set up for atm stuff and you supposed to call rather then the branch helping. Life is hard now.

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reply to bookysue about face masks and drive-up: Our bank has closed the ATM, which I was used to, and requires everyone to use the drive up. Fortunately (!) there are absolutely no masks for sale here, so not many people wear them, but, even so, it's a real challenge to hear at a drive-up window and understand. Face masks just up the ante!
Can any of us use the self-checkout places at supermarkets? I've tried a few times and just get totally frustrated because I can hear that a voice is telling me what to do, but can't decode the words. To this day, I don't know which side you're supposed to put your bag on to put things in after scanning them, so the whole thing breaks down and won't let me finish. I've gotten the same way when the phone rings: paralyzed because I fear I won't be able to hear well enough to avoid mega stupidity.

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@lizzy102

More on UPDATE. What a tragedy this Covid situation is... here I am, in an RV, living the life, just had a CI and can understand people speaking from 30’ away, loving communicating with friends and family on social linkups AND... I wanna go out and chat with everyone and that’s just not possible. I imagine that when this is over, I’ll be running up to people, hugging them and saying please talk to me, say anything, LOL. Stay safe, folks.

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Rv life you lucky- trying to do small Van rv type - folks are stating no no to Wandering Sue because of my hearing loss; no sense of direction, good medical team hear at Penn- still want -

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I do not have ci yet- and perhaps will never- my finances are bad. I am struggling with the aids I have ( 15 and 13 years old). I am not social so I can exist as I am. Still can hear somewhat with aids. I have asked AB and cochlear to help me - they cannot. Medicare only covers so much
Lucky critters are around and my books.

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@joyces

reply to bookysue about face masks and drive-up: Our bank has closed the ATM, which I was used to, and requires everyone to use the drive up. Fortunately (!) there are absolutely no masks for sale here, so not many people wear them, but, even so, it's a real challenge to hear at a drive-up window and understand. Face masks just up the ante!
Can any of us use the self-checkout places at supermarkets? I've tried a few times and just get totally frustrated because I can hear that a voice is telling me what to do, but can't decode the words. To this day, I don't know which side you're supposed to put your bag on to put things in after scanning them, so the whole thing breaks down and won't let me finish. I've gotten the same way when the phone rings: paralyzed because I fear I won't be able to hear well enough to avoid mega stupidity.

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Same problem with self check. Never know where to put items- bag and all Wow.- figures because I am a lefty and abstract - - scary though- ATMs needs to be available That’s why I am struggling to get access to such because banks do drive though( food and bank- I could never do) -and lobby appointments

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@bookysue

Rv life you lucky- trying to do small Van rv type - folks are stating no no to Wandering Sue because of my hearing loss; no sense of direction, good medical team hear at Penn- still want -

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Bookysue, I have RV’d for 30 years off and on. I have been near deaf that whole time. I am a very loud advocate for myself and taught people to hear me. With GPS, directionality is no problem. A good way to RV is to join up with a caravan - either through a company dedicated to creating tours that you drive your little house around to and everything is totally arranged, or through an RVing group like RVing Women or RVillage. Good luck!

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Thanks Lizzy. Awesome- glad to have this information thanks to you
Wandering Sue Deefie crew-ummmm

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@bookysue

I do not have ci yet- and perhaps will never- my finances are bad. I am struggling with the aids I have ( 15 and 13 years old). I am not social so I can exist as I am. Still can hear somewhat with aids. I have asked AB and cochlear to help me - they cannot. Medicare only covers so much
Lucky critters are around and my books.

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@bookysue I am new to the CI scene, I am not yet to the point where they are advised. I was under the impression that when you get to that point, insurance will pay for it? Is that not so, or do you not have insurance?
I rarely use self-checkout but the ones in the store that I most often frequent does not "talk" to you, the instructions are on the screen. I too would have a hard time understanding what was being said if they were like the ones you have used.

@lizzy102 How cool, that there are RV caravan groups. I think for women RVing alone that must be particularly great.
JK

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Medicare cover 80 percent. I do not and never will have the 20 percent
Rv with a caravan is a great idea because as stated folks folks are nervous about being off alone as a wandering Sue Deefie

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Thought I would add this note for those considering CI. When you first meet with your surgeon, take the hats you love to wear. Ask the surgeon to measure where to put the implant and assure you can wear your favorite hats. They may have different length implants which would allow them more leeway on where to situate the implant - and hence, where your processor will magnetically attach.
I LOVE listening to birds. Without my processor on, I cannot hear them at all and it is utter joy to hear them and look for them. I am not so good at locating them yet, will need more aural rehab to do that I think.
Stay well, folks, and breathe.

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