After doing as much online research as possible, I still had a bunch of questions, so I emailed AB. They responded by saying they needed to know a little more about me and my lifestyle in order to help with the accessories, so I ended up giving them a call. The representative I spoke with was very helpful, so I’ve chosen the accessories I’ll get as my “freebies” with the implant:

• Naida CI Connect – allows streaming from any Bluetooth-capable device directly into the implant. Definitely a must for me, as I often stream from my phone or iPad.
• Phonak Roger Select – external microphone. I can put it next to any sound source or, say, in the middle of a table or by someone else who’s speaking so the sound from it will go directly into my implant. The rep sent me a video about it and it seems way more advanced than the SurfLink I use now.
• Roger 17 Receiver – receiver for the Roger Select (attaches to the external processor).
• AAA Battery Pack – I get 2 rechargeable batteries with the CI; this is just in case I’m ever in a situation where I have no power to recharge or I somehow use them up.
• Phonak TV Connector – for streaming the TV to my implant. We may have to get a new stereo receiver in order to use this, as the last time we tried a similar device to stream the TV to my T-coil hearing aid, it disabled the stereo speakers (we have the TV sound going through the stereo), rendering it only audible to me — not helpful when my husband is trying to watch with me.

Had my appointment with the audiologist on Friday to talk about brands and ask questions. I had narrowed it down to Advanced Bionics or Cochlear; I liked AB because you can still get MRIs without having to have anything removed first (and the MRI seems to be the preferred medical test nowadays), and Cochlear because it’s controllable with an iPhone app. However, basic program changes and volume adjustments can be done using the earpiece on the AB, and they have a dongle you can attach to stream Bluetooth directly, and AB seems, well, a bit more advanced in terms of technology. I don’t understand all the terminology or inner workings, but it sounds like Cochlear, being the oldest and most established brand, might be content to rest on its laurels rather than continuing to innovate.

I had a few concerns about doctor availability, given how long it took me to get the initial appointment with the surgeon (almost 2 months after my assessment with the audiologist), so I asked about it, since I do want to make sure that if I have any problems after the surgery I’ll be able to see someone. The audiologist assured me that emergencies and established patients are given priority, and that they have more than one doctor who will be able to see me if needed. So that’s a relief.

I have an order form that I’ll need to fill out to choose my accessories; AB uses a point system; each accessory “costs” a certain number of points, and you get 5 points free with the implant. Anything beyond that I’ll have to purchase (presumably then it’ll actually be in dollars, not points). I’ll need to do a bit of research to figure out what accessories I want.

I’ll also have to choose a color. That’s a harder question; I was thinking I might want to decorate mine, since it might not be easy to hide, and if I can’t hide it I might as well embrace it. So I could go with standard, boring brown like my hair, or something lighter that I could get a friend’s artist daughter to paint a pretty design on for me.

So aside from that, there’s just the waiting.

We did end up going to the cochlear implant talk today, and I’m really glad we did. I already knew some of it, but I also learned a lot. They talked about what a CI does, how it works, realistic expectations for users, and the rehabilitation work you have to do after activation. These were things I had heard about before, but not in any sort of detail.

I felt really young there — aside from the presenters (a surgeon and two audiologists), we were by far the youngest people in the room. I know hearing loss happens to younger people (I was 30 when mine started), but I guess there’s a reason why it’s stereotyped as an old-age thing.

During the Q&A session, a Deaf protester came in, stood in the back, and made (I guess) booing noises, protesting against implants. To his credit, the surgeon addressed the protest, saying that they support whatever solutions people want for themselves, whether that means getting an implant, or not getting one and remaining a part of Deaf culture.

Anyway, I also got to talk to several people with implants — one of each brand, in fact. All were very enthusiastic about their CIs, and all had decided opinions on what brand they preferred. (Interestingly, the one with Cochlear brand endorsed Advanced Bionics, because it’s the only one that allows you to get an MRI.) After talking to them, I also feel better about my surgeon and audiologist; I had some concerns about difficulties with communication and getting appointments, but apparently in some places it can take up to 6 months to see someone, and this place isn’t nearly that bad. Plus, my surgeon and audiologist seem pretty well-known and respected. So that’s good to know.

So, next thing is my appointment with the audiologist next Friday. I am keeping a list of questions that I’m adding to whenever I think of any.

Received my instruction packet in the mail over the weekend, and scheduled my pre-op physical/vaccination/lab appointment. And I have an appointment with the audiologist at my surgeon’s practice next week to talk about brands and ask questions.

Meanwhile, I found a local hearing loss support group that’s having its inaugural meeting this Saturday, with a doctor giving a presentation called “What you need to know about cochlear implants: Modern Candidacy, Outcomes, and Resources”. Very timely! Unfortunately we had other plans that day (the DC Bike Ride), but I think learning all I can about the thing I’m gonna have in my head soon is probably a bit more important than a bike ride. Sometimes being an adult and having to make adult decisions kind of sucks.

Hi, my name is Tina and I’m a 48-year-old woman living in the eastern United States. I am creating this blog about two months before I’m scheduled for a cochlear implant in my left ear. This will be a chronicle of my experiences with it.

Background

I first realized I had hearing loss during a cruise in late 2001, when I was almost 31 years old. I woke up in the middle of the night to something creaking in the cabin as the boat rocked. I rolled over onto my right side and realized I could no longer hear the creaking. I rubbed my fingers together next to each ear, and I could hear it in my right ear but not in the left.

When I got back home, I got an appointment with an ENT as quickly as I could, which turned out to be a couple weeks later. After an exam and a hearing test that showed a significant drop in my left ear, the doctor prescribed steroids and sent me for an MRI. The steroids didn’t help and the MRI showed nothing abnormal, so the ENT basically shrugged and said, “I have no idea why this happened.”

For the next seven years or so, I just lived with it. My right ear was fine, my husband got used to walking on that side of me, and I was an introvert who didn’t have much of a social life and worked in a relatively quiet office, so I could get by reasonably well.

In 2008, I decided to visit an audiologist to see about a hearing aid for the bad ear. Unfortunately, the one I went to was unscrupulous. He set me up with a conventional hearing aid; when I first tried it on, sounds were amplified but I still had virtually no speech recognition in that ear — it sounded like people were speaking through a pillow. The audiologist basically said, “Sorry, hearing aids are not perfect, and this one is not returnable.”

I didn’t learn until much later that they’re supposed to let you try it for a month, and if it doesn’t work for you during that time they’re supposed to take it back for a full refund. Lesson learned.

I did wear that first hearing aid for a while, but eventually I stopped bothering because all it did was make sounds I didn’t care about louder while doing nothing to help with sounds I did, like speech.

In 2013, I decided to make another effort to figure out what was up with my hearing. I went to a different ENT, who sent me to yet another specialist in problems with the ear. That doctor ordered all kinds of tests, including another MRI, but again found no obvious cause for my hearing loss.

Some months later, I came down with a cold. As often happens with colds, my ears felt full; more worryingly, higher pitches, like women’s voices, sounded robotic in my good ear, and it didn’t return to normal when the cold went away. Another round of steroids didn’t seem to make any difference while I was on them, but the day after I fully tapered off, the robotic quality went away and things sounded normal again. Still, a hearing test done around then showed a slight drop in the higher pitches in my good ear. I asked the doctor if there was any way to predict whether this would keep happening, but since he didn’t know the cause, he couldn’t give me an answer.

I saw a new audiologist around this time and got a pair of Phonak BiCROS hearing aids. CROS hearing aids are designed for single-side hearing loss. They work by basically transmitting the sound from your bad side to the good side; BiCROS means that the good side has amplification as well as being a receiver. They were an improvement over the conventional hearing aid, but I still had problems in noisy settings, which were becoming more common for me as my husband and I met a new group of friends and started socializing a lot more than we used to. In late 2017, I switched to a pair of Starkey BiCROS hearing aids.

In the last couple of years, I’ve had increasing difficulty, especially in noisy situations. I can no longer understand TV or movies without captions turned on. Live theater is difficult as well; luckily the biggest venue in the area offers both assistive listening devices and captioned performances, and there’s a group that organizes open-captioned movie screenings at various local theaters. I can generally hear people speaking; it’s understanding the words that’s a problem. My friends are used to having to repeat things for me, and my husband often has to act as interpreter, repeating things other people say for me. I have never learned ASL.

Which brings me to the present. During a routine visit with my audiologist in late 2018, she suggested that I might be a good candidate for a cochlear implant in my bad ear. I went to the ENT and they did a lot of tests that mostly involved speech recognition. With a conventional hearing aid in the bad ear, they played me recordings of people talking with various levels of background noise. I couldn’t understand a single word. My good ear was mostly okay, though not perfect.

The ENT’s conclusion agreed with my audiologist: that I could benefit from a CI in my left ear. However, they cautioned me not to get my hopes up too much: typically cochlear implants are only done for people who have severe hearing loss on both sides, so they didn’t think my health insurance would authorize coverage. I put it out of my mind as best I could while I waited to hear back.

Last Monday (early May 2019), I got a call from the ENT’s office: my insurance had approved it. I have a scheduled surgery date in mid-July 2019. I still have to make a preliminary appointment with the audiologist to talk about what brand I will get.

In this blog, I will document my experiences as I go through the implantation and rehabilitation process for my single-side cochlear implant. Probably there won’t be many posts here until after the surgery.