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My Cochlear Implant - a journal
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.
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It is really great for all, women included. Many couples love having all of the arrangements made for them so they can travel without worrying about anything. Also, Caravan companies have tail gunners who make sure every RV makes it to each destination. If there is a problem or breakdown, the tail gunner is there to help. It is a great way to travel, for sure, JK.
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2 ReactionsGreat to know. Thanks
Please watch for updates on http://www.hearinglosskentucky.org starting in May. Most of your material will be posted then. I am looking for other journals, other experiences as well. If you would like to your compiled version, you can do so via the info. response on the website. Thank you.
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1 ReactionTime keeps passing and having a cochlear system sure gets more interesting. I need to learn to locate the direction a vehicle is coming from and the direction a bird song originates! Luckily the University near me has finally figured out the online situation for Cochlear training and rehab. I cannot wait. I have things I want to discuss with the Cochlear Audiologist who runs the group. For those interested, my taste buds continue dysfunction, at first I wasn’t bothered by it. Now, I cannot wait for those nerves to recover! I’m already super skinny and food tasting ‘off’ is no help to my appetite. Mean 20 months to recovery per one of the studies I read. There is so much that is positive and that my cochlear adds to my life, it still feels like things balance to the fabulously lucky side of the scales. Be safe out there, friends.
Breathe.
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2 ReactionsUpdate:
My implant surgery was January 12. 2020. Activation 2/3/2020. Mapped 2 times then Covid hit, usual mapping appointments cancelled.
Today I was mapped again after extensive testing.
In November, on the Monosyllabic Word Test Key (CNC List 1) MTSB CD Track 14 my results were 4 out of 50 words, 49 of 150 Phonemes or 32.6%.
Today, 5/12 same test, list 6: 44 our of 50 words, 142 of 150 phonemes or 95%.
In November on the AZBio Sentence Test, List 5: I scored .01% correct.
Today, I scored 95% without my HA in my non-implanted ear, in the booth.
With the advent Coronavirus and masked communication and electronic get togethers with family and friends, I’m very aware of how lost I would have been in these frightening times were I still relying on my HAs. Now, because I have a CI I am not afraid, I can hear through masks, communicating on Zoom and FaceTime are amazing experiences (I spend hours with my grandchildren every week).
We renovated and sold our house in the middle of all this and are living in our RV again preparing to cross to the West from the South and look for our new home. Even with Covid-19 restricting my life severely (renal transplant - immunosuppression - and A-fib), I feel grateful for my now incredible hearing!
I never guessed a CI could be so transformative.
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3 ReactionsWelcome to the bimodal world! CIs Rock! So glad you've had such a good experience!
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1 ReactionThank you, Julio4! They sure do!
I just spent 4 days in hospital. Overall it was a completely different experience, I could understand nurses and doctors - behind their masks! I had to have a heart cath though and because my wife wasn’t in the building, went to the procedure without my processor. I took paper and a pen so that staff could communicate with me. I was there for hours. What a horrible experience. 1. Because I couldn’t hear, I was treated as if I were not only deaf but also stupid. 2. Questions I had to answer were shortened to accommodate staff not wanting to write out the whole question... I could go on. The point is, a cochlear implant will not help if you don’t have the processor. Not that this shocked me as it’s been my previous experience. The staff was frustrated that I had not brought my processor, which considering the risk of it’s being lost or stolen I’d decided against doing. Lesson: next time, my wife comes with me every step of the way to take custody of the processor when I can relinquish it!
Having a cochlear implant is a big, momentous, scary, exhilarating, and exhausting experience. Six months in, my life transformed. I’m bird watching and can identify the White-Eyed Vireo, Summer Tanager, Cardinal, Titmouse, Red-eyed Vireo and more by sound alone. We sit 10’ from friends and have lunch and I understand what they’re saying. I can discern a vehicle coming down the hill vs. going up the hill. I understand my grandchildren on FaceTime and the whole family on Zoom. My taste buds have almost returned to normal. Somehow with all of those wonders, I feel a little like an pause or end is coming for this Journal. I wish I could post huge exciting changes every day, there aren’t any. Having a CI is a wonder, a miracle for me, period. I am so lucky.
We are still living in our RV here in the same state park, waiting - like so many others - for a vaccine or the virus to hit critical mass and disappear. I dislike uncertainty and the virus has offered a huge challenge for my meditation practice to managing the uncertainty and my impatience to get on with life. Thank goodness for the 8-week course we started during the early Covid time! I would likely be all kinds of crazy without it. There are good things about being in one place and forced to slow down. I hope each and all of you survive and thrive beyond Covid-10.
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1 Reaction@hba1c5 I got the Med Elin 2018 which has now been updated. A friend who also has Med El, and I are not thrilled with their service so do what you can to check out what the service of the other ones is like. If you find out the details of what a company says about their service and let us know, then we would be in a better position to evaluate and also tell you some detailed questions to ask about service.