About implants

Most readily available cochlear implants are made by two companies: Cochlear Corporation which makes the Nucleus, and Advanced Bionics, which makes the Clarion.

A cochlear implant involves an electrode surgically implanted in the cochlea, with a portion recessed in the skull. After the skin heals back over that, an external part is attached magnetically and connected by a wire to a processor that is worn on the belt like a Walkman or newer models in a smaller casing that can be worn closer to the ear. The microphone in the external ear-level part picks up the sound, and sends it down to the processor via the wire. The processor sends back a signal saying which electrodes to stimulate. This signal is transmitted through the skin to the implanted electrode which is in contact with the auditory nerve, and the nerve can then pass the signal to the brain the way it used to before the cochlea went on the fritz.

I think that is about the only way technically available to restore auditory perception but you have noticed that it has pros and cons:

Con: as you've noticed, it's expensive. I live in Canada. All I paid for was the parking at the hospital. However, I had to wait 18 months from the time I signed up to the time I got it. I think it is about $30,000 including the device and surgery, but many private insurance plans will cover it. Because it aligns nicely with their business goals, the cochlear implant companies are often able to help candidates get the insurance approval. They also, I think, help people in low-income circumstances identify sources of support such as service clubs who might pay for the surgery.

Pro: restores auditory perception (if successful).

Con: this is not the same as hearing.

Pro: after 3 months with an implant myself, I can now recognize 40% of monosyllable words with my eyes closed, which makes lipreading easier. I have over 30 years experience with lipreading and I was almost perfect at it while I had some residual hearing in earlier years, therefore it is not a “given” that anyone with the same amount of hearing can enjoy the same degree of lipreading success as I do. I do not use the telephone. I could probably call 911, but I don't want to have to struggle through that guessing game again of trying to make a social call and only understanding half the words. I want my family to meet me where I am and not where they are, communication-wise. There is no directionality, since they implant only one side. The sound quality varies and it depends on the individual “map”, or signal processing program. On mine, one of the maps sounds like bottles clinking together. The best sounds kind of like a robot talking. My husband can hear music if it’s live, not recorded. I can’t hear tunes at all. It is all one note. I heard a news item on the radio; I cannot will it to happen however.

Con: the darned wire tangles in the clothes and the magnet gets pulled off the head. The device is supposed to fit on your belt, which is only good if you wear a belt and your waist is convex, not concave. Hello!… Women get CIs too. Minor annoyances but you live with the magnet and wire every waking hour that you want to hear.

Pro: Hearing people fawn over this like nobody's business. They seem to think it's saintly. If you want to manipulate people, therefore, it's a good move.

Con: there are ongoing costs as well. The need to insure the processor against damage and loss. Cost of replacement when a new processor comes along (it seems to always be $5,000). Batteries. Wires. Possibly costs of aural rehab and remapping, depending on whether it was covered by the funder.

Con (there are more cons than pros): you can’t hear when it's off. You can’t swim with it, or sauna, or sleep, really.

Con: people think that you’re fixed, and now they can go back to talking with their fingers in their mouths, talking two at a time, etc.

Con: this is major surgery. They cut a hole in your skull. I went for surgery at 10:30 and the first clock I saw afterwards said 4:30. There are many short term side effects such as wild tinnitus (the Mars Philharmonic!), dizziness (and naturally, the hospital has a gigantic revolving door with a potted plant that goes around to deceive your tenuous balance), and of course a big bald spot and you can’t wash your hair for 2 weeks (truly the worst!) I also can no longer feel or taste on the corresponding side of my tongue. (The nerves are very close together; to access the required spot, the nerve to the tongue sometimes is stretched or even cut.)  Other people have facial nerve twitching, or permanent numbness of the incision site on the skull. A few cases had to be removed. Experience of the surgeon is very important. Many of the adverse outcomes that have happened with the implant are surgeon error. I figure you avoid that by picking the most skilled and experienced surgeon you can get to take you. The device itself may not work out for some people, but that’s just chance. It can’t really be predicted in advance. They do a CT scan of the head and so on, and can rule out some people, but once they approve it, it’s a crap shoot whether your brain can make sense of the electronic signals. Both my husband and I are among the lucky ones, but we do know people who were disappointed. The new implants are technically much better than the old ones so the potential improvement is better, but there is still the chance of failure.

Pro: when the processor is hooked up, the tinnitus is a little less.

Con: I hear birds. They never stop.

Bottom line

There are more cons than pros, it seems, but I did it anyway. I am not sorry I did it, but I do not wish I had done it sooner. Aside from the tongue thing, I got what I hoped to get from it. Birds I could do without.

Why I will not advise anyone else to get a CI

Everyone is different. One of the things that strikes me as a factor is the stress level of the person. This is based just on my own social interaction with lots of deafened people and implantees over the last 10 years, not on any studies, but my observation is that the ones who put all their eggs in that basket are not the most successful ones. It’s like their desperation and the need works against them. Ironically the most successful adult implantees I have met are the ones who also know and use sign language. This is in the same category as the people I can lipread best are the people who can sign, even if they are not signing at the time. One of the ironies of life.

I started to learn sign language in my late 20s. In fact, many of the people who are born deaf and put into oral programs by their parents are in their 20s by the time they wake up to the reality that signs are bigger than lips and they can cut their eyestrain by 99% if they learn to sign.

These are people who have “hearing world” jobs and ambitions, but they just can’t hear. They aren’t low-achievers with no language skills, selling fingerspelling cards in the bus depot. I found them to be a wonderful source of friends. They are a great source of coping techniques and tips and a refuge from the pressure of the world that expects me to hear it.

After studying sign language for a year, I started to use an interpreter at work, not all the time, but for hectic and/or important meetings, and I found that it worked wonders. Not only does it save stress for me but it saves other people repeating themselves. The worst thing a deafened person can do, often, is quit their job because they feel they can’t hear well enough. ADA or not, people give breaks to the people they know and not necessarily to strangers. Everyone knows you can’t hear, but only the people who know you know what you know, and that is what gives them the rationale to give the breaks. Deaf people, even without implants, do get by in the work world. There are concessions, such as using a TTY instead of a regular phone, and writing notes, but a good sense of humour and personal resiliency goes a long way.

Obviously, I do think that all deafened people, with their families, should take at least one course in sign language, with a deaf teacher, to negotiate some common communication ability and realize that even if the cochlear implant is a total failure, they can still communicate. It would take the pressure off the implant to solve all the problems and bring things back to the way they were before, because it won’t ever at the best of times do that.  It doesn’t have to be perfect sign language; it just has to be a common vocabulary of gestures that get past the communication hurdles. Even though we both have implants, we sign at home, and so does our little girl, who is hearing.

So, back to the beginning, the cochlear implant might be the right solution, but there are many parts to the puzzle, and any candidate and the whole family will want to explore them all. Most medical professionals will only guide you in the medical aspects, but restructuring and rehabilitating communication and relationships in the family may be a priority.