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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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I had surgery this past week. Where do I find these lists to get me started? I don't get mine turned on until 3/30. Thanks in advance for any help you can give me.
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2 ReactionsI often wonder where and who I'd be today if I had not received a cochlear implant in 2005. My progressive sensorineural hearing loss had reached the profound stage. The only way my hearing aids helped was when I used assistive technology with them. Even then I was understanding less than 30%. After a few years using the CI and one hearing aid (bimodal) I was testing in the 90% range. My brain accepted the new way of hearing, and also accepted the bimodal pairing between the hearing aid and the CI processor. It's pretty amazing, and I'm so thankful I took the advice I received through my involvement in The Hearing Loss Association of America (HLAA), to go for the CI. I had been watching people I knew make that decision for several years before I did. Their results and stories encouraged me.
It really helps to meet and talk to others who have decided to go the CI route. I am so grateful to HLAA for providing that opportunity. It also helped me to determine which of the three manufacturers I would choose. I choose Cochlear Americas and have no regrets. The assistive technology they have developed that works with their processors has helped me a great deal. It just keeps getting better. 🙂
The HLAA Chapter in my area has a CI support/discussion group that meets every other month on Zoom. That group is not brand specific, so it's possible to compare devices. The attached newsletter has information about the link to the upcoming chapter meeting, and the contact information for the CI group as well. The meetings are open. Registration is required.
2022 March NL FINAL for circulation (2022-March-NL-FINAL-for-circulation.pdf)
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2 ReactionsJust a small bit of advice here. Before your CI surgery when they are prepping you, tell the prep team you want an anti nausea patch. Not sure why, but they don't automatically provide that. It can make a world of difference to you, especially if you tend to have vertigo. I asked for this with another surgery I had a few years back. They were surprised I asked, but provided it. Consequence: No nausea after that surgery either. It helps to advocate for ourselves.
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4 ReactionsThat's great advice Julie! I will ask for some meds! Thanks everyone for all your input - really awesome. I
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1 ReactionHi Julie, So interesting you talk about that. I have been exploring the HLAA website and came across a recent webinar. It was about a medication in trail from Frequency Therapeutics that tries to regenerate those little hairs! Still in the testing phases, but very interesting. This is the link. HLAA Webinar: Potential New Therapies and Clinical Trial Opportunities for Sudden and Noise-Induced Sensorineural Hearing Loss - Hearing Loss Association of America
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1 ReactionHere is a page of resources for all CI recipients. It is rich with resources! This one is from Cochlear USA. https://www.cochlear.com/us/communication-corner/program-selection/adults.htm Click on “Adults” in the first menu that stretches across the page. Then click on Adult Communication Skills. This is a generous program of skills training which you and a partner (my grandson loved doing this with me) work through.
Here’s one of Advanced Bionics offerings: The Listening Room. Create an account (no, you don’t have to own AB CI): https://thelisteningroom.com/
Put on your fun hat and get ready to play!
Another list of resources, when you reach the page, scroll down to Rehab and click on any of the listed options: https://www.access-audiology.com/resources.
If you’re luck enough to have your CI activated in a University setting, there are usually super interesting and fun studies you can join. I joined one that helped improve my P - K, B - D sounds hearing/understanding. I also learned so much about hearing the subtleties of musical instruments so I am pretty good at identifying them when they play. I do have a little trouble telling the harpsichord from the guitar without visual clues tho, lol.
You should have enough the get started with here. Reach out to your local CI group - if there is one. There isn’t one where I live so I’m trying to decide whether to start one or not…
Best, Liz
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1 ReactionI posted a list of resources but the post was taken down. I’m so sorry.
It’s there! Thanks!
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2 Reactions@lizzy102, your post with the list of resources is still posted. See it here https://connect.mayoclinic.org/comment/689246/
Thank you for the useful resources that helped you.
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1 ReactionOh gosh, thank you so much, Colleen! I looked everywhere and didn’t see it. Silly me.