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.

@hba1c5

Which implant did you get, which Auditory Processor model do you use and how do you like it?

Thank you.

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I have a cochlear implant. I received the Freedom implant from Cochlear Americas in 2005. It has made a miraculous change for me. I currently use the N6 processor and am now eligible to upgrade to the N7 processor. Cochlear Corp. has been very supportive. They were the first CI developer to include add on devices for their processors. I use the hand held mini mic 2+ often in social settings where background noise is present. I don't always need it, but it comes in handy when I do. I am 'bimodal', which means I use hearing aid technology too. My brain has wired itself to use both technologies well together. FYI, the ear I had the implant done on, was my poorer ear. That ear had not been aided for decades prior to the implant. However, I did spend a couple years prior to the implant using a headset to listen to audio tapes. I had been advised to do that with the goal of pulling that unaided ear out of the state of auditory deprivation. It must have helped because I have had remarkable success with the CI. And, they keep getting better and better. I hope this helps.

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Which implant did you get, which Auditory Processor model do you use and how do you like it?

Thank you.

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@hba1c5

Which implant did you get, which Auditory Processor model do you use and how do you like it?

Thank you.

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@hba1c5 Welcome to Mayo Clinic Connect. You are interested in cochlear implants. I moved your question, "Anyone Have A Cochlear Implant?" to an existing discussion about cochlear implants. I did this so you could connect with members like @lizzy102 @contentandwell that have discussed this topic in the past. I also encourage you to scroll back through the comments to find previously shared posts.

May I ask how long you have had hearing loss?

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@erikas

@hba1c5 Welcome to Mayo Clinic Connect. You are interested in cochlear implants. I moved your question, "Anyone Have A Cochlear Implant?" to an existing discussion about cochlear implants. I did this so you could connect with members like @lizzy102 @contentandwell that have discussed this topic in the past. I also encourage you to scroll back through the comments to find previously shared posts.

May I ask how long you have had hearing loss?

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@erikas I am not yet to the point where I qualify for a CI but I do pay attention to the discussions knowing it could be on the horizon.
JK

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@mbower

Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

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@mbower Will your insurance cover the cost? When CI was suggested to me, my insurance would not cover any of the cost .. That was decades ago..

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@mbower

Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

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@mbower I got my first CI about 2 years ago, Med El. At the time Med El was the only one of the 3 companies you could have an MRI without any problem so I didn't do much research because I had to have that option, but they all have that option now. Based on my experience (and that of a friend as well) we have found Med El's service somewhat lacking. Since it can be very important to have good service, I would be sure to check that feature out in each of the3 companies. At some point when I was considering a CI I was given materials on each of the 3 companies. But this list and any other group of CI users may be the most informative about the 3 companies.

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Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

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@mbower Welcome to Mayo Clinic Connect, a place to give and get support.

You, "recently experienced sudden hearing loss" and you are looking to choose a cochlear implant.

You will see that I have moved your question into a discussion where members are currently discussing cochlear implants.

You will notice members like @joyces @bookysue @billgebhardt @edschickel @wittmack @davekoh @lizzy102 @alice44 @mwbucket @dstell @johnnyb7 @tulip @christinahaire @katherinebouton @wired4sound @wetmountainjohn have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the comments to find previously shared suggestions.

I have also linked two other previous discussions related to this topic.
- Cochlear Implant expenses: How much does it cost? https://connect.mayoclinic.org/discussion/implant-expenses/
- Cochlear Implants https://connect.mayoclinic.org/discussion/cochlear-implants-2e44a5/

May I ask what kind of information providers supply when one is considering a surgery like this related to the choice of products, brands ,etc. and what role insurance plays in this choice?

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@mbower

Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

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Through HLAA involvement I have met people with all three brands of cochlear implants. I'm convinced that all of the products are excellent. I only know the service provided by the CI I have, which is Cochlear Corporation. They are very helpful in navigating the insurance issue, and are very helpful when it comes to servicing their products, according to people who have needed to replace batteries, cords, magnets, etc., or have repairs, which are not common. In the 15 years since I received my CI, I've never had a problem that needed fixing. I upgraded from the Freedom to the N6 after using the Freedom for 9 years. I've been especially pleased with the innovations that Cochlear Corp. has developed for their products. The add on tech has been great. I love the hand held mini mic in noisy social settings. Now, with the N7 model, the processors stream directly with cell phones. My friends who have the other brands all say they like what they have. Prior to getting my CI, I had the advantage of watching many people go through the process of selecting a brand. I made my choice based on watching how well they did, and have no regrets. Have you ever attended an HLAA convention or chapter meeting? It does help to meet people who have CIs. Unfortunately, COVID is making that difficult.

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@mbower

Choosing the right Cochlear Implant

<p>Hi everyone, I recently experienced sudden hearing loss to my right ear back in February. After no improvement with oral steroids and steroid injections it was determined that a cochlear implant is my best option. Now I am trying to decide which CI is best for me, between the Advanced Bionics, Med-El and Cochlear brands. My question for you all is how were/are your experiences with any of these brands and what made you decide on getting one brand over the other. Thanks!</p>

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In response to mbower, about a very recent hearing loss and getting a CI:
I've had Meniere's for most of my life, was unilateral (one side only affected) until May 24, 2019 at 6:45 p.m. At that moment, Nancy Pelosi quit speaking in mid-sentence. The deafness descended that quickly. I had gone bilateral, and my "good" ear that had age-related hearing loss (I'm 78) was as useless as my bad ear had been for nearly 40 years. I could hear a little, but was unable to understand anything via phone or conversations unless I knew a lot about the subject and was totally alert, able to guess correctly for all the missing words. By Jan. of 2020, I was at the hearing center two hours away that does CIs. Because no one (not the audis or the surgeon) had had any experience with a CI for someone with Meniere's, I didn't decide on a CI. By that time, I was also having problems with balance, and V&V (vertigo and vomiting) became part of every day for hours. That's no way to live, so I finally found a local doc willing to prescribe hormones in large doses. Two weeks into HRT, not only had the V&V gone away, but my hearing returned to the level where it had been before I had gone bilateral. Big laugh, as I had thought that I was badly impaired at that level, but it was thrilling to have that amount of hearing back!

Now, there's only been one study of women with Meniere's who've tried hormone replacement therapy (HRT), a small one done in China. However, after moderating a Meniere's Discussion Group for decades, I can report that it's pretty common for women in their 40s or older to lose hearing and/or balance due to low hormone levels. If you're in that age bracket, you might think about trying to find a doc who will prescribe large doses of HRT--if it works, it will be pretty quickly. There are lots of horror stories about cancer, mostly due to the fact that for a couple of decades docs prescribed estrogen with either no progesterone or very little. We now know that the correct balance, which is 2.5mg progesterone for 1mg estrogen, does not seem to increase cancer risk; I've taken higher doses in the past and last May, even at my age. Further, if HRT does help hearing (and probably balance in the bargain), it can be tapered down to a much, much lower amount once hearing is better. For example, I took 5mg progesterone and 2mg estrogen every day for a month, then half that amount every third day, then every second day, then every day, tapering down gradually. I can tell when I've tapered too quickly if the tinnitus increases. So, over seven months I've cut the daily dosage in half and will try cutting that in half again, first every other day for at least a couple of months.

If you also have any imbalance or are now fearful of heights (more than normal) or of falling, HRT is really worth a try. I can add that I only began to have real problems with hearing/balance when I quit taking birth control pills in my early 40s. Prior to that, I had a couple of classic Meniere's crises when I had stopped taking birth control pills for some reason (to get pregnant in my 20s, because I was getting older in my late 30s). As soon as my hearing was far better and the V&V had stopped, I went to the big Vestibular Clinic two hours away in Portland, Oregon to learn the latest in vestibular rehab. in order to add new stuff to what I've done every day for nearly 40 years. As a result, I can hear (well, not everything, but enough to get by with an aid in my good ear) and do really active things like instream surveys for fish & game. A good VRT specialist will do an evaluation to determine what doesn't work as it should. I was surprised to learn that, although I've worked on proprioception (the information your feet give you) for decades, I've lost lots of feeling in my lower legs, so have to work harder on paying attention to what my stupid feet have to tell me! Basically, once again I can move around with confidence, even wade difficult rivers without fear. Well, okay, there's always fear when crossing a river with big boulders and fast current, but that's fear that make good sense!

I am extremely glad that I did not opt for a CI but did the work to regain my previous level of hearing. For a couple of months, I bored everyone around me by saying, "Did you hear that?" Shoot...of course they did, as all norms would! The first time I heard a bird sing was a real thrill. I'm still happy that I can hear appliances or the car engine running! While I was deaf, I'd turn on the water to fill a pot, cross the kitchen to do something, and, because I couldn't hear the water running, would be totally surprised to turn around and see that the pot had overflowed! Sheesh! I don't need to feel the dishwasher or washer to see if they're running...doesn't seem like much, but is a really big deal. It's great to be back in the world again!

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