Article by Andrea M. Simonson, PhD, CCC-A
Sudden sensorineural hearing loss (SSNHL) doesn’t discriminate. It can affect anyone of any age. It can also impact the loved ones of those affected. Seeing someone you love going through a distressing or traumatic event can be difficult. It’s natural to want to help someone you care for to feel better again. But it’s also important to accept what has happened. Often both those affected by SSNHL and their loved ones, live through the journey together, experiencing similar emotions.
Hearing Strange Noises
On Friday, April 7, 2017, my husband, Shai, called me from work, where he was having lunch with a colleague. He told me that something strange had happened to his hearing. During their meal, he started noticing a rushing noise along with a muffled sensation in his left ear. He asked his colleague whether he heard anything strange, any odd sounds or muffling, but his friend heard nothing unusual.
Shai moved the phone over to his left ear and said that he could hear me, but it sounded odd. Two hours later, he couldn’t even hear a phone’s dial tone in his left ear. He was a little freaked out, but I reassured him that everything would be ok, as long as we got him on steroids immediately, which we did.
Seeking Medical Advice
A few days later, we visited an audiologist and Ear Nose & Throat (ENT) doctor, and, learned that I was wrong. Many people with sudden hearing loss do not recover their normal hearing even when treated right away.
On his initial hearing test, he felt one low frequency tone, but heard nothing, except for the whooshing sound that was being generated by his own body. He asked the audiologist who conducted the test whether they could just cut the nerve so that at least his ear would stop making noise. She replied that he would continue to perceive the noise, even if they cut the nerve. Ouch.
His ENT doctor looked at the audiometric results and assessed his balance and reflexes. Everything seemed normal, except for his hearing loss and tinnitus. Hoping for a reassuring answer, I asked the doctor how much of his hearing might return. Without considering his bedside manner very carefully, he looked at both of us and said, “Oh, I don’t expect it to come back very much at all”. That certainly was not the easiest thing to hear, in the early stages of grief resolution.
After two weeks of oral steroids, followed by three intra-tympanic shots, Shai recovered a tiny bit of residual hearing, but nothing really useful on its own. He reported that the difference between no sound and some sound in that ear was like ‘night and day.’
Still, the tinnitus gnawed at him. He swore at it, slapped at it. He developed a more positive coping mechanism of playing very loud music into his deaf ear. It gave him a bit of tinnitus relief and made him feel like his ear was not really deaf.
Those first few weeks were awful. Shai’s tinnitus was overwhelming. He complained that his ‘anti-ear’ made the hearing loss more like hearing interference. His grief was palpable. I’m an audiologist, but there was nothing I could do to fix this. I felt helpless.
Connecting with Others
I joined several Facebook support groups for sudden hearing loss and single-sided deafness (SSD). I found it comforting to communicate with people who had gone through a similar experience.
One of the people I met online, Robin, mentioned that she was participating in a cochlear implant (CI) research study at Massachusetts Eye and Ear Infirmary (Mass Eye and Ear) in Boston. She and I started corresponding independently of the group, and we ended up having dinner with her when she was in Boston for a follow-up visit.
She was a great resource, as she generously shared her story of her own sudden unilateral profound hearing loss and her decision to get a cochlear implant. She understood our emotions well, and she reassured us that even though it seemed really bad, it would get better. That was nice to hear, whether or not we believed it.
Considering a Cochlear Implant
About six months later, we visited Mass Eye and Ear and met with a specialist about potentially getting a cochlear implant.
Shai was concerned about protecting his residual hearing. The specialist joked with him, “Well, I’m going to shove a piece of plastic into your cochlea, so no guarantees there.” More seriously, he validated Shai’s concerns but reminded Shai that the potential benefits of the implant might outweigh the possible loss of the very little hearing that remained. Shai’s response was an appreciative, “No thank you.”
A Change of Mind
After a few months went by, Shai surprised me by sharing that he wanted to pursue a cochlear implant for his deaf ear. He’d thought about it a lot and decided that he had very little to lose.
We met with the specialist, as well as an audiologist at Mass Eye and Ear. Shai told them, “My job is to lecture and interact with college students. Since I became deaf in my left ear, it has made it much more challenging to hear my students when they make comments and ask questions. It is hard to figure out who is asking a question. By the time I identify who is talking, I miss what they said.”
Also important, cochlear implants have been shown to reduce or eliminate tinnitus in a majority of patients in many research studies over the past few decades. We hoped that a cochlear implant would give him some tinnitus relief.
Cochlear Implant Surgery
Shai had cochlear implant surgery on May 28, 2019. It went well, and he seemed remarkably alert by the next day. He was a little dizzy, and his sense of taste was metallic on the left side of his tongue, but he was back to more or less his normal routine within a couple of days.
We saw friends over the weekend, and they couldn’t even tell that he had had surgery!
Coincidentally, he had an appointment with his dermatologist for a routine annual check-up. Someone who routinely cuts and reshapes people’s faces, she was impressed by the surgeon’s stitching technique behind the ear.
Cochlear Implant Activation Day
Three weeks later, we visited the audiology clinic for a hearing test and activation, using his MedEl Sonnet processor. Shai retained residual hearing in his CI ear, but about 20 dB worse than previously.
Activation went well for 10 out of the 12 electrodes. The highest two electrodes didn’t sound right, and we would find out later that they reside outside of the cochlea.
Shai’s first impression of speech was that it sounds ‘munchkin-like.’ His audiologist reassured us that this is normal.
A Noisy World
As we left the hospital, we both noticed how noisy the world is. Ambulances approach with their sirens on; cars whoosh by; construction equipment buzz; dogs bark; birds sing. It was way too much for him, and he took his processor off while we walked across the city.
He tried again at lunch, and again at home, but basically, the only way he could stand it was when it was completely quiet. He became pretty miserable and decided this was a huge mistake. I did my best to empathize, but also to explain that it was too early to form any impressions.
We streamed Jeopardy! using a Roger Pen. He watched the whole show this way but didn’t like it. He mimicked how Alex Trebek sounded to him–it was pretty awful and pretty unintelligible.
Reaching Out for Support
I wrote a note to Robin, our CI-SSD friend. “So far, Shai hates how his CI sounds. It’s only been 6 days, and he has been wearing it pretty close to full time. He is quite discouraged. Do you remember what it was like for you in the beginning, and if/when it improved?”
She responded, “The first week after activation I was sightseeing in Boston. I remember it being very loud and everything sounded very strange. I intentionally pushed myself to spend as much time out in public as possible. I am not sure how much the quality of sound has improved. I think it is more about getting used to it…I tried not to compare it to what I remembered as normal. I just looked at it as an adventure.”
“Voices Sound Human!”
At our follow-up audiology visit, Shai expressed how much he hated the sound quality. The plan was to add an earmold and allow him to combine his residual hearing with the electric signal. He was very pleased with this new electro-acoustic signal (EAS).
A few days later, he wrote, “I cannot begin to describe the difference — It is not just night and day… It is alien versus earthly. Voices sound human! Music sounds like music!”
His audiologist also introduced him to the Rondo2, which is an ‘off the ear’ sound processor, so of course, it could not provide any acoustic energy.
His first reaction to EAS was so encouraging, that it was surprising and disappointing to see him take the ear mold out after a few hours of wear because it was bothering him physically. Over time, he decided that he preferred Rondo2 for ease of use and battery life, despite the poorer sound quality.
Air Pockets Causing Problems
One day, his Rondo2 stopped working after only a few hours. We wondered; did we forget to charge it last night? We put it away and charged it overnight. The next day, the same thing happened. This time, we tried the Sonnet too, and discovered that the acoustic part was working, but not the electric part. Now we became very concerned that his internal device may have failed.
Later in the day, we tried each processor again, and they were both working. However, he noticed that he could turn Rondo2 on/off by clenching his teeth. Uh-oh!
We checked in with his audiologist and learned that it is not uncommon for an air pocket to form over the magnet and prevent a solid connection. This happens occasionally to this day, especially after a big sneeze.
Nowadays, he nonchalantly rubs it back into place. It’s much less nerve-racking now that we know it’s no big deal.
Effects of the Pandemic
During that first year, Shai wore his Rondo2 regularly. However, during the 2020 Covid-19 pandemic, he started to use his CI less and less often. Life was different. He didn’t have any trouble hearing just me, or his students over Zoom.
Lately, he wears it only when he’s out in public, despite me reminding him that “all waking hours” would be better. He tells me he has gotten used to his single-sided deafness and doesn’t mind it the way he used to. He has also gotten used to the abnormal sense of taste on the left side of his mouth. That hasn’t gone away yet, after two years.
Shai seems at peace with what his cochlear implant can do for him. It’s nothing like natural hearing. It’s better than deafness, but not magic. As he describes it, it’s like a broken speaker that plays in conjunction with his good ear and supports it by adding volume. It doesn’t sound very good on its own, but it makes the world sound fuller, in combination with his good ear.
This is not exactly what we had hoped for, but we can accept it, live with it, and appreciate it for what it is.
Note: It’s important to note that everyone’s experiences with CIs are unique. CIs are a relatively new treatment for SSD and deciding to opt for an implant is a complex decision. Some people adjust to life with SSD without any assistive devices or with less invasive ones such as CROS hearing aids. If you have SSD and are interested in exploring CIs as a treatment option, speak with your healthcare team to see if a CI might be the right choice for you.
For some quick information about sudden hearing loss, visit the Sudden Hearing Loss Support homepage.