Emily’s Story: Acoustic Neuroma Brain Tumor & Hearing Loss

Article contributed by Emily Truell

I was 27 years old when I realized I could not answer the phone using my left ear. I had recently gotten over a cold, so initially I blamed it on sinus pressure and let it go. But it persisted, and while I wanted to dismiss it as hypochondriacal, I told my doctor anyway. 

“I’m not sure if I’m crazy, but I feel like I can’t hear with my left ear.” 

“So let’s get a hearing test,” he suggested, “and see if you’re crazy.”

I wasn’t. While my right ear had normal scores, my left ear had severe hearing loss.

The Diagnosis

At my follow-up appointment with an ear, nose, and throat (ENT) doctor, he searched for an environmental factor that would explain the hearing loss, but nothing I could tell him about my lifestyle explained it. He ran several tests, including one to check if my hearing nerve was functioning – and this one came back ‘inconclusive’. 

“I have to order an MRI to double check for this benign brain tumor,” he explained, as a matter of process. “It’s really rare – in my entire long career, I have only seen six of these. I’m sure you don’t have it, but we have to double-check.”

I was lucky number seven.

I was diagnosed with a 3cm acoustic neuroma (or vestibular schwannoma – it’s known by both names). This is a benign brain tumor that grows on the balance nerve, and it impacts hearing as well.

Making a Treatment Decision

With an acoustic neuroma, some people can monitor symptoms and wait to take action; but my tumor was large enough that I needed treatment. I had the choice between radiation or surgery. Choosing a treatment path required a lot of research; ultimately, I chose surgery because, according to studies, my tumor was too large or on the edge of too large to be safe for radiation.

Along the way, I spoke with several different doctors. An acoustic neuroma is considered a rare disease, so it’s important to make sure you receive treatment from doctors who are familiar with it. Not every neurosurgeon has operated on these. If you have the option, I recommend a team that does at least one of these surgeries a week.

Choosing a Surgical Approach

Once I had decided on surgery and found my team, I still needed to decide on a surgical approach. There are three different entry points for an acoustic neuroma surgery: 

• The first, middle fossa, I was not a candidate for. 
• The second, retrosigmoid, gave the possibility of saving my remaining hearing, but increased the likelihood of headaches after surgery, as well as possible damage to my facial nerve. 
• The third, translabyrinthine, would result in total deafness in the left ear, but had the best odds of preserving the other nerves. 

I chose the third option. It was the right and logical choice for me, but an extremely difficult and emotional call to make.

Surgery and Initial Recovery

My surgery took 9 hours, but they were able to remove my entire tumor, and my facial nerve was fully preserved. I spent the next 10 days in the hospital because I had the complication of a cerebral spinal fluid leak. I was extremely motion sick immediately after surgery, and I had to completely relearn my balance, as my left vestibular nerve was cut. When I finally built up to walking laps, unassisted and at a glacially slow pace, around the Neuro-ICU ward, the nursing staff cheering me on as I passed, I felt like a total rockstar.

The Long Road of Recovery

Recovery from brain surgery is challenging. I often feel doctors don’t paint a very realistic picture. I was entirely off work for about 6 weeks; then I returned part-time for a couple more. By around 8 weeks post-op, I was back to full-time. But back at work doesn’t mean fully recovered. I was definitely healing for eighteen months. The fatigue is very real.

Recovery is long and slow because nerves heal about an inch a month. There’s a lot going on inside as the brain adjusts to the change in your balance system. Simultaneously, figuring out how to deal with single-sided deafness had a steep learning curve. I struggled to balance pushing myself to strengthen and recover skills without pushing too hard and setting myself back by overdoing it. That line could move on a daily basis – recovery is not a straight line.

Emotional Healing and Vestibular Therapy

Coping With Hearing Loss

Unfortunately, I was not offered any sort of aural rehabilitation to help me with the sudden change from being hearing to having hearing loss. I had to do a lot of research myself. Luckily, I had some people in my life who also had one deaf ear, and they counseled me on strategies to help me cope with my hearing loss. There are so many small considerations that can lessen the struggles of hearing loss – like body placement or speech reading – and I wish there was a formal process for sharing those strategies with everyone as they’re starting out.

When I was diagnosed, I’d already lost about 90% of my left-side hearing. I thought that losing that last 10% would not be a big transition, but I was surprised to find that going to zero was very impactful. Though I couldn’t understand conversation with my left ear prior to surgery, I could tell there was traffic, or hear someone walking up on my left. Once I lost that last amount of hearing, I really felt the deaf shadow that was made by my head being in the way of the sound. I felt very unhappy with my hearing loss and decided to research my options.

Exploring Hearing Devices

Just feeling like I could do something about my hearing loss was helpful for my mental and emotional state. A diagnosis like a brain tumor can make you feel powerless. Taking steps to improve my quality of life and lessen my disability helped me feel stronger and more in control of my life. My hearing device journey was very empowering.

I met with an audiologist about 5 months or so after my brain surgery. I had the opportunity to try out both CROS and bone-anchored (BAHA) hearing aids. (I was not a candidate for a cochlear implant, as the tumor had destroyed my nerve.) Both a CROS aid and a bone-anchored hearing aid work by picking up sound at the deaf ear and routing the sound over to the hearing ear. A CROS aid accomplishes this by wearing hearing aids in both ears: one as a microphone, and one as a receiver. A bone-anchored aid does this by sending sound through the skull through vibrations.

I found that I did not really care for the CROS aid. I didn’t like wearing an aid in my hearing ear and blocking a little natural sound. I also found the CROS aids uncomfortable, though the audiologist assured me that custom molds would be much more comfortable. The final nail in the coffin: I chronically tuck my hair behind my ears, and the feedback from that movement was incredibly obnoxious.

But I loved the experience with the BAHA. I liked that it did not go in my ears or impact my hearing ear. It felt quieter than my hearing ear, so the more robotic qualities of the sound blended in. It felt comfortable to me.

Getting the BAHA

The Measurable Impact

At a recent appointment, I was able to get actual numbers on the impact the BAHA has on my hearing. I have normal hearing in my right ear, so when they test my hearing in just that ear in a quiet setting, I get a score of 100%. My left ear is totally deaf. They performed a speech-in-noise test, where they had me listen and repeat a sentence in the midst of lots of background noise. This test had sound coming from multiple speakers positioned around the room – not through earbuds. It really feels like trying to hear in a crowded restaurant. 

When I did the speech-in-noise test with just my right ear listening (the BAHA turned off), I got a 63%. I felt that was about what I would expect, as I have half the ears of normal people listening. Then I repeated the test using my BAHA, and my score was 81% – the BAHA added 18%. To me, that information really demonstrates the huge amount of assistance the BAHA gives me. I have always said it’s not like having 2 working ears, but it’s a lot better than one. By the numbers, it’s a solid ear-and-a-half! 

Looking Back, 10 Years Later

You can read more of Emily’s story on her blog, The “Lucky” Brain Tumor.