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 | @barbb | Dec 21, 2019

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

lizzy102 | @lizzy102 | Dec 21, 2019

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.

btpanda | @btpanda | Dec 21, 2019

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

lizzy102 | @lizzy102 | Dec 22, 2019

In reply to @barbb "Quite the story you have here. It is not clear to me what you think caused..." + (show)

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.

barbb | @barbb | Dec 22, 2019

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!

Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2019

Hello All:

Mayo Clinic recently released a Youtube video about Cochlear Implants (CI). I found it very interesting and wanted to share it with this group. The video (only about 10 minutes long) talks about who can benefit most from a CI and what the surgery is like. What I found most interesting was that this procedure is most helpful for people who have a hard time hearing when there is background noise.

For those of you who have had this surgery, will you let us know if your experience was similar to what is discussed in this video?

lizzy102 | @lizzy102 | Dec 23, 2019

In reply to @barbb "Did he say that's what he was doing or is that your surmise? Of course he..." + (show)

He told us what he was doing. I’m not sure he was all that rude - you have to remember that I could not understand him until he revealed his ‘test’. He was speaking at normal volume, normal speed, and acted like ‘normal’ people do when confronted with a HOH person. They remember for a minute that you asked them to make accommodations and then forget. I deal with that attitude from clerks in stores and other strangers all the time. I appreciated his care - after I realized it was a test and calmed down - in wanting to assure himself of just how much a cochlear could benefit me.

lizzy102 | @lizzy102 | Dec 23, 2019

In reply to @hopeful33250 "Hello All: Mayo Clinic recently released a Youtube video about Cochlear Implants (CI). I found it..." + (show)

That was very interesting. The discussion of ‘real world functioning’ is a mirror of my experience with the testing and the surgeon. Thank goodness the criteria have expanded to include more of us who are having trouble functioning and have problems with recruitment.

lizzy102 | @lizzy102 | Dec 29, 2019

ApproachIng the implant appointment I am having anxiety at night or at odd quiet moments. Worried that I can actually hear better than the tests could decipher and the ear I’ve chosen for the implant is the wrong one. Worried that my tinnitus will be unbearably worse in that ear. Worried about the color of processor I chose (of all things). You name it, I’m probably worried about it! Yikes!
I have been so certain... this feels a little weird, sudden UN-certainty.

lizzy102 | @lizzy102 | Jan 14, 2020

I had a fun meeting with some other CI folks the other day, I told my tale of the meeting with the surgeon and guess what? Both of the people I was speaking with thought their surgeons were ‘jerks’. We all realized that the surgeon is the last gate keeper to make an assessment. I respect the surgeon now, for his experience and caring.
I’m two days from surgery and have anticipatory nerves. Step by step I am moving forward toward better hearing and understanding.