Can’t believe that it’s now been 5 years since my first implant and 3 since my second.

I haven’t been updating this blog much lately because really there isn’t much new to say. I had my annual mapping almost a month ago, and my scores are fairly consistent with last year’s: word recognition in the 90s and sentences near 100% in quiet, not quite so good in noise. Overall sound quality remains about the same as I’ve described it before: it sounds like everyone I talk to is at the other end of a phone call. I’m pretty used to it by now, though.

So really, I’m just living my life. For the most part, it’s not all that different from before the CIs.

It’s been four years today since my first (left) implant was activated, and a little over two years since the second, so I thought I’d check in. I haven’t been posting lately because there hasn’t really been much new to say. Unlike in the beginning, there aren’t new milestones happening all the time; I’m just living my life.

I’m now at the point where I only need to see the audiologist once a year or so as long as I’m not having any problems. I just had my annual visit last week, and my results after testing in the booth were a bit of a surprise. The last few times I was tested, my individual word recognition scores in quiet were in the 70s, with sentences in the 90s, so I figured I had hit a plateau and that was as good as I’d get. However, this time I got 82% on individual words in the left ear, 94% in the right ear, and 99% for both ears together, which is a definite improvement. For sentences (with both ears), I got 99% in quiet, and 85% and 65% on the two noise tests (the latter being the higher noise level).

As the above scores show, my right ear is slightly better than my left, although I hear best with both together. The left is the one that I had to have the revision on last year; thankfully there have been no issues with the new implant on that side thus far, and AB’s reliability reports for that model have also been promising, with far fewer failures than the recalled model had at this point in its lifetime.

In terms of daily life, I live fairly normally; my hearing issues don’t really cause me too much difficulty. I do sometimes miss things here and there, and situations where there’s background noise are more challenging. That’s just a limitation I’m learning to live with, and I’m getting better at letting it go when I miss something rather than stressing about it.

I still tend to use captions when watching TV, movies, etc. I don’t have to rely on them 100%, but it’s nice to have them when the background sound gets loud or someone has an accent.

Music still doesn’t sound great. I can listen to songs I knew well before my hearing loss, since I remember how they’re supposed to sound, but my days of discovering new bands may be finished. This doesn’t bother me a whole lot, since it’s not like I was ever all that adventurous when it came to new music anyway.

The sound quality of the CIs is still just…okay, as compared to normal hearing. It still sounds like the person I’m talking to is at the other end of a phone call, which makes sense given that everything I hear is being picked up by microphones and there are 16 electrodes stimulating each of my cochleas rather than millions of tiny hair cells. However, it remains way better than being deaf, and I am grateful to be able to hear at all. And I do rather enjoy being able to completely shut off my hearing when the world gets too loud. I sleep way better at night now that every little noise doesn’t wake me up.

So, that’s the state of things after 4 years of having a CI and two years with bilateral CIs.

Been a while since I posted here, mainly because there hasn’t been much new to report. My revision activation went fine, as I mentioned last time, and by the next mapping I was at my optimum volume level. In the summer I went to my audiologist and got in the booth, where we found that my individual word recognition was 74% in the right ear and 72% on the left, and my sentence recognition in quiet was over 90%. Not quite so great in noise: 83% on sentences at +10dB SNR and 49% at +5dB. But that’s not much of a surprise. Which is actually a good segue into the topic of my post, since it’s a device that can help in noisy environments.

One of the new accessories I got with my revision was a Roger On iN, which is Phonak’s latest Roger microphone. This is a versatile device. Its primary function is an external microphone: you can have someone wear it, or place it in the center of a table or near a sound source such as a speaker, and any sounds it picks up go directly to your CIs.

The Roger mics have another function in addition to being external microphones: using the included audio cable, you can connect them to any device that has a headphone jack and stream sound from that device directly to your CIs. While the Bluetooth streaming capability of AB’s new Marvel processors is awesome, the fact remains that I do come across the occasional device that doesn’t do Bluetooth and just has a headphone jack. This is where the Roger is incredibly useful, as it can act as a streamer for these devices.

I have had a Roger Select, the Roger On’s predecessor, since I got my first CI a few years ago, but there were two things I didn’t like about it. First, it didn’t stream in stereo, only mono. Second, its surface was so touch-sensitive that using it as a streamer for non-BT devices was almost impossible if you were moving around. While streaming, the microphones on the device are muted, but the slightest brush against the surface of the Select would un-mute them so you’d get ambient sounds in addition to the streaming. This was highly annoying.

The Roger On iN solves both of these problems. It has a button to control its microphone functions, and that button is not easy to press by accident. And it can stream in stereo! (Note: you do have to pair it to each processor individually, or your processor and hearing aid if you’re bimodal, or else you’ll get the sound in both ears but it’ll be mono.)

After more than two years of not going to shows thanks to the pandemic, I went to one last weekend so I had the chance to try out the Roger On with the Kennedy Center’s assisted listening device. Here’s what it looked like:

The ALD was the thing that looks like headphones; it’s worn around the neck with the fat part facing the stage. Normally you put the earbuds in your ears, but I didn’t need to since I was connecting the Roger On (top) to it and using it to stream, so I just draped it around my neck with the ear buds in back, and the Roger dangling underneath. This might have been a little awkward if I were moving around, but I was just sitting still so it was fine.

The sound quality was incredibly clear; though the performance had open captions, I didn’t really need to use them. The Roger On makes an excellent non-BT streaming device.

So, looks like Phonak must have taken user feedback to heart when creating the Roger On, because it is a definite improvement over the Roger Select.

This review has mostly concentrated on using the Roger On as a streaming device, but of course its primary function is as a microphone. Basically, it has several modes. In table mode, as the name suggests, it’s meant to be placed in the center of a table; microphones all around the device are activated depending on who is talking. There is an optional phone app which allows you to focus on a specific speaker, as well. In pointing mode, the beam is focused directly in front of the Roger On, so you just aim it at the speaker or other sound source. And finally, in presenter mode the Roger On is meant to be worn by the person you are listening to. It comes with a clip and neck lanyard to make this easier.

The Roger On will automatically try to detect your current listening situation, and set its mode accordingly. If you want to set it manually, you just press the button on the front of the device until the correct mode icon shows up. (These are shown in the user guide.) The optional phone app can also adjust the mode, so you can remotely set it even if the Roger is further away from you.

During the time I have used CIs, I have found that the closer my processors are to a sound source, the clearer it sounds; air and ambient noise between me and the sound source tend to make it less clear. So the Roger essentially lessens that distance and brings the sound source closer to your processors, making it clearer; it can be placed up to 80 feet (25m) away from you. In noisy situations, this can make a huge difference in understanding; as an example, I’ve found that placing it near the speaker helps with clarity while listening to music or podcasts in the car. Combine that with its ability to stream from any device with a headphone jack, and it’s a worthwhile accessory to own in my opinion, especially as it fixes the problems that its predecessor, the Roger Select, had.

Despite the complication that happened during the revision surgery on my left ear, my recovery was very smooth and easy. I had no balance issues or dizziness, and once again didn’t even bother to get the painkiller prescription filled, as Tylenol was more than sufficient for the (very little) bit of pain I had. I do seem to have lost my sense of taste on that side, which is not great as it appears that the taste didn’t fully return on the other side after the last surgery. I can still taste some with the back of my tongue, so I’m just glad I didn’t lose it entirely.

Activation was this morning. I learned after the fact that they had not been able to test the new implant after the surgery because it was so late that the audiologist had gone home (can’t blame her — it was almost 10pm by the time I woke up!), so I had no idea if it would even work.

However, it turned out fine. She did the test first, and said it all looked good, so after the initial (tedious) setting of the volume for each of the 16 electrodes, she switched it on and I could understand her immediately. It wasn’t quite as clear as the right side, or the original on the left before it started failing, but it didn’t sound like beeps like the other two activations did, so I expect that I just need a little ramp-up time for it to start sounding clearer, which is pretty typical.

I’ve now got the usual activation setup: five increasing volume levels. Because I maxed those out really quickly last time, I asked her to increase the volume jump between levels this time. She agreed that the same was likely to happen again given that I could already understand her, so she did; she said that I might only get to level 3 before I’m at my optimum volume, but that’s fine by me.

The way that AB processors handle Bluetooth for bilateral recipients (since classic BT can only connect to one device at a time) is that one processor acts as the “primary” which actually connects to your phone or whatever, and it is paired with the other processor to enable stereo streaming. My right one had been the primary since I was implanted last summer; at this appointment I asked her to switch to the left so I could optionally remove the right processor and stream only to the left ear in order to give it more practice. She did, but I discovered when I got on a work call that they weren’t paired properly, so I only heard the streaming on the left. However, she actually had some time open this afternoon so I popped back over there (luckily, it’s only about 5 minutes away) and she fixed it.

So now, all is well.

After months of waiting, my failing implant on the left was removed and replaced yesterday. It did not go smoothly, but at least I wasn’t awake — I only heard about it after the fact.

Backing up a little, I didn’t get word from the doctor’s office about the insurance approval for the surgery until early April, more than a month and a half after I saw the doctor; I got the letter directly from the insurance company saying it was approved before the surgeon’s office did, for some reason. Anyway, the earliest date they had available was May 18th, which was later than I had hoped, so they said they’d check with the doctor and see if they could move it earlier. I didn’t hold out much hope for that, but 2 weeks ago I got a call asking if I wanted to have it done on April 26th. Though we had plans to take a trip that week, we decided this was more important and postponed it, and I rushed to get my pre-op physical done in time.

The hospital intake process was the same as the last two times: get undressed and into a gown, answer a whole lot of questions about my health, current medications, etc., talk to the doctor and anesthesiologist, and have my vitals taken and an IV set up. Aside from being a little cranky from hunger as the surgery was scheduled late in the afternoon so I couldn’t eat all day, no real issues there. (Bonus: the new date meant I would not be on my period during this surgery, as I was for the last two, and would have been if the original May date had not been changed.) The doctor said that since this was a removal and replacement rather than a new implant, it shouldn’t take long — maybe an hour or so. This turned out to be optimistic on his part.

I was wheeled back to the OR, scooted over onto the operating bed, gave them my right CI processor (which I had kept on till the last minute so they wouldn’t have to pantomime instructions in the OR), had the mask placed over my face…and then I was waking up. They gave me a cup of water and called Ray in, and that’s when I found out that there had been problems, and it had taken way more than an hour — there were no clocks around, so I hadn’t realized that it was almost 10pm when I woke up.

Ray said that the doctor had been out to see him 3 different times; he’d taken out the failed implant easily enough, but was unable to get the new one positioned correctly due to scar tissue, so he tried the backup, and was also unable to get that one in. He considered giving up, letting me heal for a month or so, and trying again, but decided to give the first one another try and was able to do it. The surgeon’s notes on what happened:

“A postauricular incision was then made. Dissection was carried down to the mastoid cavity where the previously placed cochlear implant was identified. This was dissected free from the surrounding soft tissue and bone before it was removed. The area of the round window niche was inspected and was found to be significantly scarred. The facial recess was drilled further open to achieve better visualization. The area of the round window niche was debrided and an attempt was made to place the new implant. After multiple tries, the back-up implant was placed, but xray did not show the electrode to be in place and NRT testing showed suspect results. The patient was then re-prepped and draped. The area of the round window niche was further debrided of scar and apparent boney regrowth at the round window was drilled away. The new cochlear implant was then inserted into the cranial well, and the implant was then placed to full insertion. This was confirmed by Xray. The wound bed was then copiously irrigated with normal saline. The electrode was coiled within the mastoid cavity.”

So it was after 10 by the time I got home; I ate some leftovers and went to bed. Didn’t really sleep, but I expected that as it happened the first two times as well, from the steroids they gave me during the surgery. I’ve lost my sense of taste on that side, but that happened on the other side when I went bilateral and it came back after a few months, so I’m not that worried. The only thing really making me miserable is that my chronic post-nasal drip has kicked into overdrive. At least it doesn’t hurt to cough. Ray has gone to fill my antibiotic prescription and find me some cough drops. I won’t bother to get the painkiller prescription filled, as I didn’t have much pain with the previous surgeries and the same is true so far with this one. If that changes in the next couple days, I can always go fill it.

Last time I got implanted, I only took off work on surgery day and the day after, but now I’m taking the whole week, mostly because I didn’t travel last year due to the pandemic, so I have vacation time to burn before my work anniversary date next month. So I’ll be taking it easy this week.

It occurred to me a few weeks ago that my insurance company’s website might have some indication of the status of my pre-authorization, and it turns out it does — there’s an “Authorizations and Referrals” page. I’ve been checking it once a week or so, and finally, late last week, it showed that my CI revision has been approved!

However, a week later, my surgeon’s office still hasn’t called me to schedule. I called them a few days ago, but got sent straight to voicemail; their message says they’re understaffed due to COVID and not to call more than once or it would take them longer to respond. I am SO frustrated! I really want to get this done, preferably at a time that doesn’t get in the way of my plans. I have a few things coming up, and scheduling around them will be tricky, especially since I will need to factor in recovery time and make sure I’m not exposed to COVID too close to my surgery. But short of going to their office in person, I don’t know how to get in touch with them when they don’t answer their phones.

I get that everything is messed up due to COVID, but the numbers are way down in this area so I would have thought that things would be getting back to normal. The rates were higher last summer when I got my second CI, and yet they got back to me within days after I saw the surgeon.

Anyway, I just needed to vent. I spend every minute of the business day glancing repeatedly at my phone, willing it to ring…but so far it’s only been spam calls.

Not much new news, unfortunately. I saw the surgeon a few weeks ago and am now waiting for insurance approval for the revision. I’m impatient — I just want to get this over with already.

I also did end up going back to the audiologist to get my left processor changed back to the previous program, as the tweaks to compensate for the bad electrodes were driving me nuts. As it is now, the volume and quality are worse than the right side, but I can live with it until I can get the revision done.

I ordered waterproof cases for both my processors, and I got a CI Wear shirt — this is a really cool product that someone on the CI Community Discord told me about. It has a closed pocket on either sleeve for the waterproof case, and inside the pocket is a sturdy elastic to clip the case to, as well as a hole to allow you to thread the cable through the sleeve, up the back of the shirt, and out the neck. I believe this is going to be my solution to the roller coaster problem; it might not keep the headpieces from coming off my head, but they won’t get lost. Now it just needs to get warmer so I can try it out!

But in the meantime, just waiting, waiting, waiting for that insurance approval….

As my friends have gotten older, more of them have started to experience some level of hearing loss, so occasionally someone asks me for advice, and it occurred to me that I could make a post here that I can just point people to when they ask.

Before I get to that, I should add a disclaimer: I am neither a doctor nor an audiologist or any kind of medical professional, and this post is based solely on my personal experiences with hearing loss. If you have any questions about your own hearing, please consult an ENT or an audiologist.

I will also mention that while some of this advice may be applicable to parents of children with hearing loss, I am a late-deafened adult with no kids. Therefore, I have no experience in handling hearing loss as a child, or as a parent of a deaf or hard-of-hearing child. Obviously, learning to sign is an option for anyone who loses their hearing, but as I have not done it, it’s also not a subject I have any experience in. This post is mainly aimed at late-deafened adults who have lived all their lives in the hearing world and want to stay there, although it is of course a perfectly valid choice to join the Deaf community and communicate exclusively by signing.

Specific bits of advice will be in bold and italics, in case you want to skip to them.

Sudden Hearing Loss

A lot of times, hearing loss happens to older people and comes on gradually — this is why there’s such a stigma around it, because it’s seen as an “old people’s problem.” However, as I personally can attest, sometimes even young people can lose hearing very suddenly and for no apparent reason.

If you experience a sudden loss of hearing, go see an otolaryngologist (ENT) as soon as possible. I cannot stress this one enough! If you call and they can’t get you in for weeks, push back or try someone else, because sudden hearing loss is an emergency, and the longer you wait for treatment, the less likely it is to work.

Treatment for sudden hearing loss usually involves a course of steroids, either oral or injected directly into the eardrum or both. They don’t always work, and even if they do, you may still end up with some level of loss, even if it’s not as severe as it was initially. So again, it’s extremely important to get to a doctor as soon as possible, preferably within a day or two after you notice the loss.

The ENT may also recommend an MRI after a sudden loss of hearing, in order to determine if there are any tumors that could be causing the loss.

Getting a Hearing Test

The first thing anyone with hearing loss needs to do is find a good audiologist and get a hearing test. I don’t really have advice on finding an audiologist besides the standard stuff, like looking at reviews and getting recommendations from your doctor. (Many ENTs will have audiologists on staff, so often you can just see theirs if you’ve also gone to a doctor.)

Hearing tests typically have a couple of parts. The first is called “pure-tone audiometry”. This is where they play you a series of beeps and you press a button or raise your hand when you hear them. The tones will usually start out loud and then get softer, or vice versa; the object here is to see how loud a sound needs to be before you can hear it. The louder it needs to be, the more pronounced your hearing loss is. Some hearing loss occurs only at specific frequencies; for example, you might have trouble with the higher ones but be fine in the lower range. After this test, the audiologist will produce an audiogram representing your specific hearing levels.

I won’t go into how to read an audiogram here; there are plenty of resources for that, like this: https://www.healthyhearing.com/report/52516-The-abc-s-of-audiograms

The second part of a hearing test is word recognition. Either the audiologist or a recorded voice will say words and you have to repeat them back. More thorough tests might even include sentences or background noise. They will probably test each ear separately, and assign a word recognition score (WRS) at the end, which is the percentage of words you heard correctly.

Always ask for a copy of your audiogram for your own records. If your hearing loss should progress, having this history will be helpful to future doctors and audiologists. I did not do this at first, and was chided by several doctors who wanted to know how my hearing had changed over the years.

Hearing Aids

If you do have hearing loss (but aren’t totally deaf), the next step might be to get a hearing aid. Hearing aids are basically little amplifiers. Microphones on the outside pick up the sounds around you and send it to a little speaker in your ear canal. Therefore, hearing aids may not help if your hearing loss is severe, because they only amplify sound, meaning you have to have some hearing in order for them to be effective.

There are several types of hearing aids available; this page does a pretty good job of listing several of them: https://www.healthyhearing.com/help/hearing-aids/types

Your audiologist is the best one to assess your specific hearing loss and recommend which type of hearing aid might be best for you.

The most important piece of advice I have for people who are looking for hearing aids:

Before you pay them a dime, make absolutely sure that you get a trial period of at least a month, more if possible. This will allow you to try out the new hearing aids in the real world and see how well they work for you, because when you’re sitting in the audiologist’s quiet office and it’s just you and them, that’s not a really good example of the situations you will encounter in daily life.

Most US states have laws requiring a trial period for hearing aids; I don’t know about other countries. Always, always ask the audiologist about this before you buy, because you should absolutely be able to get your money back if they don’t work for you. (I got burned the first time out and was stuck with a useless HA, because I wasn’t aware of this.)

Once you have your hearing aids, make the most of your trial period by using them in a variety of situations. How well you hear in a quiet room is going to be different from a crowded restaurant, or a live concert, or a movie theater, so you will want to try out as many of these settings as possible.

Keep notes on how well you’re hearing in different situations. With most modern HAs, the audiologist can give you different programs for different situations, or tweak your existing ones. Just because it doesn’t work for you at first doesn’t mean it can’t be adjusted; modern HAs have some pretty sophisticated abilities to handle specific types of hearing loss and specific settings (like lots of background noise). You might need to see your audiologist a couple of times during the trial period; however, if you get to the end and you’re not happy, don’t hesitate to return it and ask about other options.

Once you settle on a hearing aid you like, go see the audiologist at least once a year, or however often they recommend. Your hearing may change over time, so once you start losing it, it’s a good idea to get regular tests, talk to the audiologist, and have them make any necessary adjustments.

Volume and clarity are two very different things. This is something a lot of people who have never had hearing loss don’t really understand, and it’s also why hearing tests include both tones and word recognition. When I got my first HA for my left ear, it made everything louder, often to the point where things were way too loud. However, if I covered my good ear and just tried to listen with the HA in the other ear, it sounded like the other person was speaking through a pillow: the words were loud enough, but I couldn’t make them out, and my word-recognition score in that ear, even with a hearing aid, was somewhere around 10%. Conventional hearing aids can help with volume, but they do nothing for clarity, so there may come a point where they’re not useful.

Different hearing aids have different capabilities and accessories. If Bluetooth streaming is important to you, ask the audiologist before they order your HAs, as some do have the ability to stream built in. Some also have phone apps to allow you to tweak certain settings on the fly. Not all of them can do these things, so it’s important to tell the audiologist what’s important to you.

No two people’s hearing loss is the same, so what works for someone else may or may not work for you. This is why I am avoiding making any specific brand recommendations here. The only way to know what will work for you is to see an audiologist and try some out.

Single-Sided Hearing Loss

Some people only lose hearing on one side, and the other is fine. If a conventional hearing aid works on the bad side, great! But if it doesn’t, ask your audiologist about CROS hearing aids. These come in pairs; one goes in your bad ear and has the usual microphones to pick up sound, but instead of the sound going into the same ear like with conventional HAs, the one in the bad ear acts as a transmitter, which sends the sound from the bad side into a receiver in your good ear. This allows you to hear sounds on both sides through the same ear.

There is also a related type called BiCROS, which is for people with severe to profound hearing loss in one ear and mild to moderate loss in the other. They’re basically the same as CROS, except that the good side also has amplification in addition to being a receiver for the bad side.

CROS/BiCROS HAs aren’t for everyone; like everything, they have their advantages and disadvantages. Again, this is why a trial period is so important.

Surgical Options

There may come a time when conventional hearing aids don’t cut it (see above point about volume vs. clarity). We are pretty fortunate to be living in an era where some pretty amazing medical technology exists that can help. This is obviously something you’d want to discuss with your ENT if an audiologist says your hearing has deteriorated past the point where HAs can help, but I’ll mention a couple of options here.

The first is a BAHA, or bone-anchored hearing aid. They are surgically implanted; you can find info about them on the web (for example: https://www.hopkinsmedicine.org/otolaryngology/specialty_areas/hearing/hearing-aids/baha.html). You can actually try one of these without the surgery; my ENT lent me one to try some years back. (Without the surgery, a headband holds it in place.) BAHAs are used to bypass the outer and middle ear, so they’re only useful for certain types of hearing loss.

And the second, of course, is cochlear implants, which can be an option for people with severe to profound hearing loss when hearing aids no longer work. If you read the rest of this blog, you can find out how I ended up with them, from the evaluation process on up through surgery and activation, so I won’t go into that story here. The one thing I will say on this catchall page is: Neither CIs nor HAs are perfect. Once you start experiencing hearing loss, you will never have your normal hearing back again exactly as it was before, and it’s depressing to keep dwelling on that fact. I do my best to try and remember that it’s better to compare my current level of hearing with what I would have if this technology didn’t exist, rather than with the way my hearing was before I needed it, because my normal hearing is not coming back. So even though I do still have my struggles, I am incredibly grateful that I’m living in an age where this technology has been able to restore my hearing — not to normal, but to good enough to function in the hearing world.

Other Accommodations

People new to hearing loss may not be aware that accommodations do exist, although you often have to ask for them. Some movie theaters offer open-captioned showings at selected times, where the captions are displayed right on the screen. For those who live in the greater Washington, DC area, there is a group that organizes OC screenings in DC, Maryland, and Northern Virginia; you can find them on Facebook: https://www.facebook.com/groups/974135299310973

Movie theaters will also provide captioning devices if you ask, but I personally dislike them and prefer to seek out OC screenings. And the larger live theaters will also often have open-captioned shows; just look for “Accessibility” on their web page or call them and ask.

In addition, many theaters (both movie and live) also offer assisted listening devices (ALDs), though again you have to know to ask for it. These are small FM receivers with headphones, so you can get the movie or show’s sound directly from the theater’s sound system, which can be helpful if you have trouble hearing it through the theater’s speakers. I actually have an accessory that I can plug into an ALD’s headphone jack, which will stream the sound directly to my CIs, which is really nice. I can hear the movie sound okay just with the speakers, but it’s always clearer if I can stream it. This also has the additional benefit of blocking out any sound from the rest of the audience, so you can’t hear babies crying or people coughing or talking.

All modern hearing aids and CIs also have telecoils. This is an older technology that uses electromagnetic signals to transmit sound. It’s not hugely common in the US, but I know of at least one live theater (the Kennedy Center in DC) that offers ALDs with optional neck loops that transmit to t-coil HAs and CIs. You can also buy a neck loop which can be plugged into any device’s standard headphone jack and will transmit the device’s sound to your t-coil. However, this functionality must be enabled in your HA or CI by an audiologist in order to use it.

There are also live-captioning apps for various phones which will display speech on the screen. In a pinch, the Notes app which comes standard on Apple’s iPhone can be used to transcribe speech in real time; just open it up and tap the little microphone, and any words it picks up will show up on the screen. These apps are not perfect, but they can be helpful. Zoom, MS Teams, and other meeting apps also will often have a live-captioning option; you just have to look for it.

In my last post, I mentioned that I’d noticed a decline in quality on the left side. About a month ago, my audiologist had someone from AB come and do an integrity test. Today I found out the results, and it turns out that 6 of the 16 electrodes are failing as a result of the same issue that AB issued a recall notice for in late 2019. She turned off those electrodes and tweaked my program, but it sounds even worse. Still, I decided to give it a chance and see if it gets better as my brain gets used to it. If not, I will ask her to put it back.

In addition, I am going to schedule an appointment to talk to the surgeon about revision surgery (removing the implant and replacing it with a new one). The issue is likely to get worse, and I want to get it fixed as soon as possible.

So yeah, not a great start to the year.

Before my right ear was implanted a few months ago, both the doctor and the audiologist said that once I was bilateral, my right ear would very likely become my better one again, since it had been for 18 years before the left side was implanted. So after my last mapping, when I noticed that the volume on the right side has been higher than on the left, I attributed it to that, or to the fact that the right implant is still new and the mapping needs to be refined. I definitely notice that if I take off one processor or the other, I struggle to understand more if I’m just using the left one than with just the right one.

At my latest mapping the other day, I told the audiologist about the volume difference and she started to make adjustments. The typical procedure during a mapping is for the audiologist to use software to play a series of beeps in different pitches, each one stimulating a single electrode in the implant. As the beeps play, I tell her whether the volume is at a comfortable level, or whether it’s too soft or too loud. The levels on my left side have been basically stable for most of the last 2 years, so this test has generally gone pretty fast at previous mappings.

During this last mapping, however, the beeps on the left, at levels that hadn’t been changed in at least a year and a half, now sounded very, very faint; some of them I couldn’t even hear at all without a large increase in volume. It seemed strange to me that a second implant on the other side would be responsible for this, and so I suddenly wondered: could my left implant be starting to fail?

Towards the end of 2019, AB announced that there was a problem with recent implants from fluid getting into the sensitive internals. They immediately pulled existing products so no more of them would be used, and alerted those who already had them; I was one of the people who received the letter indicating that my implant was one of the ones that had the problem. The failure rate seemed to be fairly low, so they were not going to advise removing and replacing implants unless they started to fail. So all I could really do was hope it wouldn’t affect me. (My second implant is a newer model which hopefully should be okay.)

Anyway, according to the audiologist, the way to check for this type of failure is an impedance test, which she does at every mapping regardless. Apparently the impedance in my left implant is lower than it was last time, but not low enough to confirm that it is actually failing. So she said she would share the data with AB and see what they say. I am still waiting to hear back. She said that even if it is failing, there are ways to program around it, so we’re definitely not at the point that I need more surgery.

In other news, a few weeks ago we went to Cedar Point, then last weekend we went to Kings Dominion. At Cedar Point, I took off my processors to go on the roller coasters, because I didn’t want to risk losing them. However, since I really can’t hear at all without them, it felt like I was all alone on the rides, reinforcing the fact that deafness can be very isolating. So when I went to Kings Dominion, I tried using Ear Gear to secure my processors. They have covers with a loop for your eyeglasses arm to go through, and I modified them slightly using jump rings to make the loops a bit longer, because the positioning of these loops wasn’t really where my glasses are — it’s on top of the cover while my glasses are behind it. Here’s the modification I made — two aluminum jump rings and two rubber rings through those, which my glasses arm goes through:

This worked better, but turned out not to be a viable solution for roller coasters: the motion still made them come off my ears, although they didn’t go anywhere because the Ear Gear was pretty secure. Still, the goal was to be able to hear while riding, and they didn’t work for that. Plus, I spent the whole ride worrying about losing them, which didn’t make for a lot of fun. I think I will need to just suck it up and get the waterproof case, which would allow me to keep the processors off my ears and stick them in a pocket or something.

A few weeks ago I had a hearing test to see if I had retained any residual hearing after my second surgery. And the answer is: almost none. I heard about 3 of the beeps, but only at the very loudest volume. Considering that I had just been to an amusement park where I heard absolutely nothing without my processors on (despite the fact that parks are noisy places), this was not a surprise. I had hoped to retain some hearing, but I knew it might not happen so I had to make peace with this before getting the second implant.

So now I just wait to see what AB says about my left implant…