My hearing loss journey...consider a cochlear implant?

Photo by behear

It's been nearly 9 years since I lost the hearing on my left side. To be precise, the hearing on my left side has been replaced by a constant tone of about 3.2kHz. Thankfully, I am able to ignore it most of the time.

It was a Friday night. I had been taking clarinet lessons from an awesome teacher. Sadly, I am unable to remember his name. Anyway, I was finishing a practice session at home and that 3.2kHz tone started ringing in my left ear. I didn't think too much of it at the time and expected that it would soon cease.

My wife arrived home shortly after the end of my practice session. As she spoke, I realized that something was off. She came closer and we figured out that I could not hear anything in my left ear, other than the infamous 3.2kHz tone.

I didn't know what to make of it and continued to think that it had something to do with me blowing into the clarinet. Perhaps I blew too hard, though Autumn Leaves is not a tune that requires any intense breath.

It came time for bed and then the bad part started. I awoke to an episode of vertigo. I recalled the room spinning when I was younger and drank too much. Well, when you haven't had a thing to drink and you wake up to the room spinning, it's pretty freakin' disturbing. I got up to go to the bathroom and was dizzy. After the spinning subsided, I went back to bed to try to get some rest.

I got up the next morning, still feeling dizzy when getting out of bed. I sat down at my computer and searched for "sudden hearing loss." Much to my dismay, everything I read said "you should consider this an emergency situation." I told this to my wife and off we went to the emergency room. We were living in Bellevue, Washington at the time and the hospital was only 20 minutes away.

It being a Saturday morning, there were no particular specialists in the ER that had experience with what I was dealing with. They reached out to an ear, nose, and throat specialist, gave me a prescription for a steroid to reduce any inflammation that might be the cause and told me to see a specialist as soon as I could. Again, it was a Saturday, so the soonest I could see a specialist was the following Monday.

My dizziness continued and I had to be careful whenever I stood up.

When I got to the specialist's office, they did a hearing test which revealed, as expected, a total loss of hearing on my left side. There was some slight bit of hearing at very low frequencies, but no matter how loud they tested my word recognition, I could not make out a single word and the sound was just garbled noise.

I described the situation of my hearing loss and how I had been playing the clarinet and asked if it could be the result of the clarinet playing. He said no, that could not have caused it.

The doctor ordered a head MRI to determine if there was a tumor that might be the cause. The doctor also prescribed an anti-viral medication as there are some viruses that can cause hearing loss.

I returned to the doctor about a week later. They did another hearing test...same results. The MRI was clear, thank God. The prescription for the steroids, and it was a lot of pills each day, ran for about 2 weeks. When that was done, I went in for yet another hearing test...same results. At that point, if the oral steroids have not been effective, they proceed to inject steroids directly into your inner ear, through the ear drum. It's not as painful as it sounds. The needle is remarkably thin and they give you a local anesthetic. My wife got to watch it on a screen as they guide the needle with an ultrasound monitor. There is a series of 3 injections that they do over a period of 3 weeks.

After that 3 weeks, I again returned for a hearing test...same results. At this point, the doctor shrugged his shoulders and said that they have no idea what caused my hearing loss and that it was unlikely to return. They call it idiopathic, meaning:

"relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown."

Swell!

Over the course of the next couple of months, my dizziness dissipated and my balance got back to normal. I no longer had to put my hand on the wall in the shower to feel stable on my feet. I could even feel ok playing tennis again.

I decided to get a second opinion. We had had very good success with doctors out of the University of Washington. They have a medical school. I looked up all the ear specialists and made an appointment. Needless to say, it started with a hearing test...same results. This doctor also said that the clarinet playing could not have been the cause of my hearing loss. He did mention that a cochlear implant could be an option, but noted that I did have some residual hearing, so it might not be a great option. At the time, I did not consider this to be a serious option for me and dismissed the idea.

For those who don't know what a cochlear implant is:

"A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin." Source: National Institute on Deafness and Communication Disorders

Fast forward 9 years...here I am, about to embark on the journey to see if I'd be a good candidate for one of these.

So why now? There are several reasons for considering taking this path. The challenges of single-sided deafness have been increasingly have an effect on my quality of life. Since it is very difficult to tell where sound is coming from, when out in the world, walking in town or through parking lots, it takes additional visual diligence to feel safe in my surroundings. This takes energy, and as I age, it does take its toll. Second, when out in a restaurant with friends, it can be very difficult to hear the conversation, particularly in a noisy restaurant...not fun. Third, as I age, it is likely that the hearing in my "good" ear will begin to deteriorate. And if, in an unlikely scenario, I were to lose the hearing in my good ear, I would be left completely deaf. With a cochlear implant, the hearing in my implanted ear will not deteriorate, so I would still be able to rely on it. Lastly, that 3.2kHz tone that I mentioned is a condition called tinnitus.

"Tinnitus (pronounced tih-NITE-us or TIN-uh-tus) is the perception of sound that does not have an external source, so other people cannot hear it. Tinnitus is commonly described as a ringing sound, but some people hear other types of sounds, such as roaring or buzzing. Tinnitus is common, with surveys estimating that 10 to 25% of adults have it." Source: National Institute on Deafness and Communication Disorders

From my research, people suffering from tinnitus, who go on to have a cochlear implant find that their tinnitus symptoms are greatly reduced or eliminated. That sure would be nice.

Before describing my path to considering a cochlear implant, I should note that there are other options for treating single-sided deafness. They include a bone-anchored hearing aid, or BAHA. These operate my mounting a device, including a microphone, into the skull on the deaf side, and through bone-conduction, the sound is transmitted to your good ear. This, however, does not solve the problem of determining the direction from which a sound is coming from. Nor does it do anything to relieve tinnitus.

A second option is called a CROS (contralateral routing of signals) hearing aids are designed for people who have hearing loss in one ear. The hearing aid picks up sound from the affected ear and sends it to the healthy ear, which processes all hearing signals from both sides of the head. This allows you to hear all sounds around you, regardless of which direction they're coming from. CROS devices require that you wear a hearing device on both sides. Like the BAHA, it does not solve the sound direction problem or provide relief from tinnitus.

So how does one go about determining if one is a good candidate for a cochlear implant? We live in Northern California, north of San Francisco. We have had good success with the doctors at UCSF (a successful knee replacement and a great cardiologist). So I located the UCSF Cochlear Implant Center. I contacted them and described my situation. They sent me a packet to fill out. I filled it out and sent it in. They called me to set up 3 appointments. The first is for a 2-hour hearing assessment, the second is for yet another 2-hour hearing assessment, and the 3rd is for a meeting with a surgeon...we're talking about May, June, and July of this year, with that first hearing assessment scheduled for 11 days from now.

I have been doing a lot of research into what is involved in the process. Interestingly, it is not as if once you have the implant that you can suddenly hear as you did before. The audiologist that you work with post-implantation adjusts the signals generated by the device and they work with you to tune it to meet your needs. Then there is a 3-6 month (or as long as a year) rehabilitation process, involving a lot of practice listening, to get your brain to understand these signals as speech. It is quite a process.

There are 3 primary manufacturers of the devices, Cochlear America, Advanced Bionics, and MED-EL. They each have their pros and cons. And each company, once you reach out to them for information, goes to considerable lengths to educate you about why they have the best product. In fact, I've had one-on-one video calls with representatives from each of the manufacturers and they have put me in contact with users of their devices. I've had several conversations with users and have joined a couple of forums. There's a Discord Server where you can discuss everything about them. On this particular server, they ask that you go through a process that color codes your user name according to which implant you have, or even if you're just considering an implant. And there's a Reddit channel for discussing cochlear implants. One of the manufacturers has a forum called HearPeers where I've met several wonderful people and have participated in a Zoom conference with several of them. All in all, it's quite a community of people willing to provide input and help in this journey.

I'm both nervous and excited by the prospect of being able to hear in my left ear again. I had given up the clarinet lessons after losing my hearing as the vibrations of the reed made it more difficult to hear the sound as I played. Not to be music-less, last year, I started to learn to play the piano. I wrote a couple of posts about that journey here and here. I hadn't practiced in a few months, but recently restarted and hope to continue.

Well, that's where I am at this point. I suppose that noting the start of this journey commits me to writing about progress along the way. Stay tuned...

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