Talking Hearing Loss

Anji Greene ·Sunday, December 30, 2018

First I want to say that living with one ear is totally doable. It’s commonly referred to as Single Sided Deafness (SSD) and over the past 7 months I’ve learned that it is a known ‘thing’ that can happen to anyone, including me. Over 60,000 people in the US each year acquire SSD for various reasons. It is frustrating and isolating and there are several unexpected adjustments required (more later). However if you have to lose a body part, I would say losing one ear is not all that bad. I do not feel like SSD is disabling, yes it can lead to awkward situations at times, but I am just grateful that I can hear. I can listen to music, I can hear voices, birds chirping, dogs barking and all kinds of sounds.

I want to write down my experience with SSD in case this happens to you or someone you know. I am here to provide help. It is scary in the beginning, but finding others that have gone through the same thing was really what helped me the most. Not to mention I am surrounded by the best support system ever in my family and friends!

So what happened

Last May, while sitting in Bud Walton Arena in Fayetteville, AR, waiting proudly for my daughter to walk across the stage and receive her diploma from the University of Arkansas, I suddenly lost hearing in my right ear. There was no prior event or pain, it just felt like my ear filled up with fluid. Not wanting to miss any of the weekend festivities, I largely ignored my ear for the next couple of days and loading up on decongestants, none of which helped.Back in Austin, I immediately went to an ENT who set me up with an audiologist to evaluate my hearing. While the test showed my hearing was not completely gone, I was diagnosed with severe to profound sudden sensorineural hearing loss in my right ear. I could hear some high tones and no low tones, but unfortunately my word discrimination was zero – meaning that when isolated, I cannot understand any words in that ear at all. The best news was that the hearing in my left ear is really good, thank goodness.

The first 2 months were the hardest

Initially I had a lot of tinnitus in my right ear. For me, it sounded like someone crunching a bag of chips constantly next to my ear. Over time, this got much better, I think my brain adjusted/ignored it. Now I mostly ‘hear’ static in my right ear, but it is much quieter.The biggest challenge and where I still struggle, is in large group situations, especially restaurants, with a lot of people talking and things going on in the background. The sounds all blur into one flat mono channel and are almost incomprehensible. People with normal hearing can selectively hear a single voice against background sounds and focus on it. I pick up on maybe 50% of the conversation and it’s challenging to participate. Large meetings at work are tough too, I do a lot of guessing on what is being said, and often get it wrong.I’ve learned that without two working ears, the brain has difficulties distinguishing the origin of sounds, which hampers your ability to determine the location and direction of sound. With 2 ears, you essentially have stereo sound, or 2 channels. Your brain employs the ears to filter out background noise. It tells one ear, the one nearest to the sound you want to focus on, to listen to a voice. Your other ear handles the background sounds. This is why in a noisy restaurant, you can still concentrate on the conversation at the table. When you can’t use that tool, the mind gets confused. It’s unable to filter out background sounds like a fan blowing, so then the fan ends up being the only thing you hear.

Adjusting to SSD

• I always have to worry about seating in a meeting, restaurant or anywhere really – to accommodate
• I have no sound location skills, and generally have to spin until I hopefully see where the sound is coming. Being called by friends in a crowd, or from across the street is quite awkward
• Riding my bike and checking for traffic is nerve-wracking, cars tend to sneak up on me much more often
• Driving the car is frustrating, because I can’t hear conversations very well – the radio has to be silent
• It’s clearly annoying to others when I ask them to repeat often, sometimes I ask, sometimes I don’t
• In really noisy situations like with a band playing, I can’t participate in conversations at all so I just pretend. I’m all nods and “yes, sure, wow, oh that’s nice, I see, great thanks, oh my, awesome, really?” – I hate this
• I’m learning to be more perceptive of body language to piece in the gaps of the conversation I missed, instead of asking them to repeat
• At times, if I miss the little quip with a group of people but you know it’s meant to be a chuckle, I just laugh along to keep the conversation flowing
• It’s mentally exhausting most of the time trying to filter all the noise in one ear
• At work, when working on my computer it’s not an issue, but I do use headphones more often because if even one person is talking close by, I can’t block it out like I used to

So what caused it

The Net: We don’t really know. My doctor said it was most likely a viral infection.Most common causes of SSD

1. Tumor – acoustic neuroma, a benign tumor developing on the nerve that connects the ear to the brain (ruled this out with an MRI)
2. Sudden idiopathic (spontaneous) hearing loss, which is commonly due to viral infection
3. Blunt trauma to the head (ruled out because this never happened)
4. Ménière’s disease, a disorder that affects balance and hearing (ruled this out because I don’t have any of the other symptoms of Ménière’s)

I have a couple of other theories (Note: these are my personal theories, none of my doctors agreed with me)

• I had a tooth infection on the same side that spread into my sinuses the month prior to losing my hearing – ear-nose-throat, they are all connected. See? This makes more sense than ‘viral’ infection. Tip: Don’t ignore tooth pain.
• Otoxicity – drug or chemical-related damage to the inner ear, ibuprofen is one such drug known to be ototoxic. I have always been a big fan of IBP. Tip: Don’t take too much Advil!

So will the hearing come back

For some people, hearing can be regained (typically within 4-6 weeks). For me it did not.After I lost my hearing, I saw 4 different ENTs, 5 audiologists and proceeded with a variety of treatments over a 5 month period in hopes of getting my hearing back. There were no improvements.Treatment options taken: anti-virals, oral steroids, steroid shots in my ear and diuretics. (I’d be happy to share the doses, specific meds if you’re interested although they clearly didn’t work).

Permanent aids

In the order recommended by the doctor

1. CROS hearing aids (contralateral routing of signal)

I tested with the CROS hearing aid for a few weeks. This is when there is a transmitter in the bad ear which sends sound to a receiver in the good ear via bluetooth. Apparently this is helpful for a lot of people, however for me I found it to be not beneficial at all. It does nothing to help with my 2 biggest issues, sound localization and background noise filtering.

2. Bone anchored hearing aids

I also briefly tested with a bone anchored headband which is the same idea as the CROS. The BAHA devices send sound from the bad side to good side, but in this case the conduit is via bone conduction. The results for me were similar to CROS – no benefits.

3. Traditional hearing aids (sound amplification)

I tried 3 different hearing aids. 1 trial through the audiologist and 2 over the counter. I actually found the traditional hearing aid to provide some value, I was able to get a bit of sound localization back, however not enough to really want to wear it full time.

There are now several great over the counter hearing aid options (FDA approved). I would highly recommend for anyone looking for an easy solution for specific situations like in restaurants, movies etc. Check out Bose Hearphones and Nuheara IQBuds. These are both useful for binaural or unilateral hearing loss, they are thousands of dollars cheaper than hearing aids prescribed by the audiologist, and in my opinion just as effective.

4. Cochlear implant

This involves surgically implanting an electrode in your cochlea (inner ear). This device when turned on will partially restore hearing in that ear. Hearing through an implant is different that natural hearing and takes time to adjust, it sounds more robotic. Your brain has to learn how to marry the natural hearing with robotic hearing. Cochlear implants are now being used for SSD more and more with great success.

Now what

Originally, I had no interest in pursuing a cochlear implant. Any residual hearing that I had would be lost (most likely) and it just seemed like an extreme option to a problem that is very manageable. However, over the months I found myself more and more opting out of group situations and/or withdrawing from events that I typically love to participate. When ACL Festival rolled around in October and for the first time in probably 5 years I really, really did NOT want to go, I realized that a cochlear implant might be worth considering. A CI might make noisy, music-filled environments which I have always enjoyed – bearable again.

After much discussion, soul-searching, research and talking to others with SSD – I decided to move forward with the cochlear implant.

The electrode was implanted on Dec 18 and will be activated next week on January 3!

I know that I will never fully regain my hearing, and I am ok with that but if a relatively low risk surgical procedure gives me the possibility to get my stereo effect back, then it might be worth it!