Cochlear implants are not like in the movies

I watched “Sound of Metal” last weekend. I figured with it being up for Best Picture at the Oscars I should see what’s being put out there to the world. It had moments of greatness and fantastic acting. But as a story about hearing loss it was extremely lacking. I could go into detail, but without too many spoilers I want to clear some misconceptions people may have after watching it, and I want to spell out the cochlear implant process so people can learn what that movie doesn’t show.

Okay, so you suddenly can’t hear. What should you do?

Sudden hearing loss does NOT necessarily mean it’s gone for good. If you’ve been hearing your whole life and have never had issues before, something is likely medically wrong. Find that cause, or at least some probable causes. And start corticosteroids, a heavy dose of prednisone. If your doctor/ENT asks why, call me. Just have them do it, and do it as quickly as possible after your hearing loss. Trust me. I don’t know the whys exactly, but it’s been proven in many, many cases (including mine) to restore hearing.

#2 – See a competent audiologist
Unlike the in the movie, where the audiologist was absolutely awful, go see someone who will actually take the time to explain your options. Moving forward, you’re going to have a strong relationship with this person, regardless of whether or not your hearing gets better. If it does get better, you should probably still get your hearing tested regularly. If not, your audiologist is your new best friend. They’re the person who is going to make you hear again to the best possible extent. You’re going to see them a LOT. You may need to try a couple of different people, and that’s completely okay. Depending on your prognosis, you may want to find a center that works with both hearing aids and cochlear implants.

#3 – The Implant Evaluation
If your audiologist determines from your initial hearing tests that you may benefit from a cochlear implant, the first step is the implant evaluation. This is a different hearing test than what’s normally given. It’s a full speech recognition test. I’ve gone through it a couple of times in the past – obviously the last one, I qualified, so I don’t need to ever do it again – and the test has evolved. The most recent test I had was various voices reading simple to complex sentences at varying speeds. It felt like there was probably 50 sentences, but I’m guessing in reality it wasn’t that many. Some of them had background noise. This is to determine your speech recognition score at normal conversational volume. If you wear a hearing aid, it is done with you wearing the device. It’s designed to see how well you function in hearing society. In the US, the FDA has a specific number you need to score below on this test to officially qualify. That number used to be 30% speech recognition back when I first took the test, but they have since raised the number, and made the test more difficult and more like reality. In 2007, I scored 100% on the test. In 2016, I scored 27%. My hearing didn’t change, the test did. Insurance companies may have different numbers than the FDA on whether or not they’ll pay for a single implant or bilateral implants.

Oh yeah, back to the movie. HEALTH INSURANCE WILL COVER COCHLEAR IMPLANTS. Sorry, didn’t mean to completely blow your plot there, writers.

#4 – Research the technology
Whether your audiologist recommends hearing aid(s) or cochlear implant(s) or one of each, it is your responsibility to learn about it. There are countless brands of hearing aids, but really only 3 or 4 brands rise to the top, especially once you get to the level of severe or profound hearing loss. There are only 3 brands of cochlear implants in the entire world. They all have advantages and disadvantages. You can ask your audiologist what they recommend, and they may specialize in one brand over others. But if you decide you want to go with Advanced Bionics and/or Phonak after reading the material and your audiologist doesn’t program for those devices, shop for an audiologist that does. You are not married to their suggestion, it is your entire life you are deciding.

#5 – More medical tests
If you qualify for cochlear implant(s), you’ll then meet with the surgeon who will go over your medical history, the cause of your hearing loss (remember step 1? that’s important.) Then they’ll order an MRI of your head. This is important so they can see the bone structure and pick the best placement on your head for the implant to sit, and also to make sure your hearing anatomy is in good enough shape for the implant. In the past, cochlear implants (like mine) were not compatible with MRIs, so this would be your last MRI unless the implant is removed from your head. So it was also to see any issues you may have in your brain that will need future MRIs. In my case, my brain is questionable (hahaha), so I also had to have a neurologist sign off on getting the implant. In the last year or two, Advanced Bionics has released a new implant that can be used with MRIs, so it’s not quite a big deal, but this step still needs to happen.

#6 – The surgery
The surgery is usually done outpatient, and really doesn’t take all that long. You’ll be put under, and will need someone to drive you home. In fact, you shouldn’t drive for a minimum of 2 weeks post-surgery, in case your balance is temporarily affected afterwards. (Sorry to blow that plot again, but how exactly did he get to/from surgery?). The recovery was not nearly as bad as I was expecting, but I have a weird tolerance for things. Again, I’d suggest researching it. Listen to what your surgeon is telling you, because they’re all a bit different, and each surgery center is different. My incision was not closed with staples (when did he go get those out?) and was not nearly as big as shown in the movie. Depending on your anatomy, the surgeon, and just the situation, you may not lose whatever hearing you still have in the ear. If you wear a hearing aid, it may still provide you some benefit. I had no hearing in my implanted ear, so I have no idea if I lost any more or not.

#7 – Recovery
I took a week off of work. I should have taken two. I was tired. My body takes a long time to heal. I was off of the pain meds during the day on day 3, but I did take them to sleep, because I’m a side sleeper and was afraid of rolling onto that side, which was more bruised than anything else – again, that’s specific to my body. The bruise from my IV during surgery was far worse. I’ve heard that some people temporarily lose taste, some have dizziness, some have jaw pain. For me, the weirdest thing was the lack of feeling on that side of my head until the nerves healed. It wasn’t bad or painful, it was just sort of uncomfortable. I couldn’t feel my ear, it didn’t feel like it was attached to my head. But that lasted only a couple of weeks.

My incision, 4 days post-surgery
It’s not nearly as big as you think. They barely shaved my hair.

#8 – Activation
Technically, the implant itself is activated and tested during surgery. It’s stimulated to see that it works inside your body. But the implant, the part that goes in your body, is a passive device. From that moment, it is not active again until what’s known as the “activation” appointment with your audiologist. The implant is “activated” every time the external processor (the device worn outside the body, with a magnet that connects it to the internal piece) is connected. But this appointment is where your audiologist will give you the external processor that you’ve chosen and you’ll hear for the first time post-surgery. They’ll go over all the equipment with you (and there is a lot more than just the processor) and then they’ll stimulate each internal electrode one-by-one to make sure you can hear each one. Okay, it works! You can magically hear again! Not so fast, they turn it off again as quickly as it was turned on. Then you slowly go through each set of electrodes and set the maximum comfortable volume on them. When you haven’t heard for awhile, that may be really quiet. My audiologist gave me three programs on my processor, simply increasing the volume on each one because she knew that within a day or two, my brain would be able to tolerate more volume. When I saw her again a week later, I was already on the third level.

#9 – Mapping
A week or so after activation, you’ll go for your first mapping – mapping is the programming of the processor to get you hearing to the best possible extent. This is a lot of trial and error. So rather than flying to Paris, you should probably plan on sticking close to your audiologist for at least the next 6 months. I had appointments weekly for three weeks, then monthly for 6 months, then every 3 months, then twice a year, and 5 years later (and really only due to COVID), I’m at annually – but will probably go back to twice a year because after 5 years, the warranty on my processor is up, so my insurance company will buy me a new one. My brand (Advanced Bionics) has released an entirely new processor with new hearing aid and new software this year, so I’ll be upgrading, which will likely require more regular mapping appointments again. Why do you need so much mapping? So you don’t hear people like cartoons or robots, or like he does in the movie. Your brain is changing and recognizing new sounds, especially in the early months, but this will continue for the rest of the time you have the implant – it may not be dramatic changes, but I find I need a “tune-up” every now and then.

#10 – Rehab
Hearing rehabilitation starts the moment that processor activates your implant. You can be active or passive about it. I highly recommend active, and your audiologist will too. This means listening exercises, audiobooks while reading along, and actively trying to distinguish sounds. I did several hours of this a day for the first month actively, then was able to move to a more passive model, where the sounds I was hearing in my normal environment were enough to improve the quality of what I was hearing. Then I started throwing music into the mix, which was another process in itself.

#11 – Happiness?
If you’re lucky, you’ll end up like me, and getting the implant will be the best thing you’ve ever done for yourself. I have 98% speech recognition now, even in background noise. Music is rich, deep, and honestly better than I remember with my natural hearing. I can distinguish pitches and can sing again, better than I ever could before. I spend a lot of my workday on the phone. I go to movies without captions. While I can watch TV without captions, I choose not to because if I’m watching TV it’s so my brain can relax. Unfortunately there are people who don’t get to where I am. But I would bet that the majority of those people would still say it was worth doing.

So there you go. Please don’t believe a work of fiction on how it all works and everything they left out. They had the opportunity to educate, and they absolutely completely blew it. I’m not even commenting on the Deaf community and my opinions on that. My belief is that if you have grown up as a hearing person, you will not be happy in a Deaf community. You are used to functioning in the hearing world and need to do what you can to be able to continue doing that.

Take it off!

If we learned anything in 2020 it’s that masks are easy to hide behind. We can hide our face, our personalities, our germs, and of course, our mouths. I wrote at the beginning of the pandemic about how difficult lipreading is when everyone’s wearing masks, but what I’ve learned since then is that you can tell what kind of person someone is by how they behave about their masks.

Continue reading

Live from my living room

So it’s been awhile. I haven’t felt the need to talk much about my hearing lately because, at 3.5 years post-implant, there’s not a lot of new things going on. I go through my days alone, spend a lot of my workdays on the phone (!), and have little issues in my daily life unless I forget to actually put my hearing devices on in the morning. But I want to address a few issues for people with hearing loss in the current pandemic that I have personally run into.

Continue reading

Living a deaf girl’s adventure tale

I’ve spent the past three years writing about how music has changed for me – from being a hearing person, to a deaf person, to a cochlear implant user. The song that I keep coming back to as my example piece is “Take On Me” by A-ha. I’ve talked about how each time I listen to it I hear something new – a nuance that I missed before. Well, recently I got to have the ultimate listening experience as I caught A-ha live twice on a visit to the UK. It was both amazing and awful and I loved every second of it.

Continue reading