Lucky Number Seven

By Emily Truell

The author with her BAHA.

In 2015 when I was 27 years old I saw an ENT doctor because I had realized I could not hear on the phone with my left ear. The doctor told me that I had probably lost hearing on one side from a loud traumatic event, or a virus.

But since he couldn’t rule it out, he would do an MRI to check for a rare brain tumor called an acoustic neuroma (AN) or vestibular schwannoma. He told me, “You probably don’t have it. It is super rare. In my entire long career I have only seen six of these tumors.”

I was lucky #7.

In the course of seeing doctors and seeking treatment, I would often have medical professionals, friends, and family make statements like, “If you’re going to have a brain tumor, you’re lucky it’s this kind, this is the best brain tumor to have. You’re so lucky it isn’t cancer.”

But finding out you have a rare brain tumor definitely doesn’t feel like good luck—more like losing at long odds.

I was fortunate to have my mom as I underwent my brain tumor journey; she was also a survivor of a different kind of benign brain tumor. My mom gave great support and advice, and having someone in my corner who understood meant a lot to me.

I decided that I wanted to pay it forward, and support other brain tumor warriors on their journeys. It has been my way of taking something horrible that happened to me and turning it into something positive and good. I began volunteering with the Acoustic Neuroma Association in a variety of capacities. Helping other AN warriors has been a great joy in my life.

Single-Sided Deafness

I am single-sided deaf as a result of my AN and treatment, and it’s been a steep learning curve finding my way though motherhood and my career with hearing loss. I had a toddler when I was first diagnosed and now I have two kids, ages 10 and 5.

I have become very passionate about the topic of hearing loss, as well as hearing devices. I started a blog, Lucky Brain Tumor, as a place to support, encourage, and share resources for brain tumor warriors on their journey. I also want to use it as a platform for advocacy for those with hearing loss. I hope this is a place to feel seen, empowered, and more hopeful.

So often access to assistance is just not there. I feel strongly that cultural stigma around hearing loss and devices is creating huge, unnecessary barriers for folks with hearing loss. Insurance companies should not be treating hearing aids as cosmetic (many don’t cover them at all).

Young people should be able to feel comfortable in their own skin while using hearing assistance devices. Together we’re changing the narrative around hearing aids.

Me and My BAHA

I chose to get a bone anchored hearing aid or a BAHA, and since this is less common than hearing aids or cochlear implants I get a lot of questions about it.

A BAHA works by picking up sound, the sound’s vibrations, and sending these vibrations through the skull—via bone conduction—from my deaf side over to my hearing side. The working ear’s cochlear then sends the sound to the brain through the auditory nerve. Sending the sound waves through the skull means the middle ear is completely bypassed.

The BAHA can attach to your head as a clip on as mine does, or it can attach with a magnet. There are also nonsurgical options that attach to the head using a headband or adhesive.

The abutment is above and behind the ear.

Typically using a magnet is not an option for someone who's had an acoustic neuroma like I did, because a magnet results in sound that is a little bit quieter than a clip-on style. Most of us who have had an acoustic neuroma don't have a hearing nerve remaining on the tumor side of the head, so the sound has to travel all the way over to the other side of the skull. The amplification has to be as loud as possible.

The post in my head is called an abutment. It was installed as an outpatient surgery, just one day, similar to a dental implant procedure. There is not a long recovery or a lot of healing. It can also be removed during an outpatient office visit.

When I want to put on the BAHA, I just clip it onto the abutment, and I'm ready to go for the day. And honestly, almost no one ever sees it under my hair. It's totally hidden.

For me it makes a huge difference in my day to day living, particularly at work. I own and operate campgrounds. It is a family business that my grandfather started more than 50 years ago and has grown to over 450 sites. My work is extremely customer service heavy, and my BAHA really helps me be more successful at work.

The BAHA is not the same as having two hearing ears, but it is much, much better than only having one hearing ear, particularly when someone is speaking to me on my deaf side. With the BAHA I know someone's speaking even if I don't necessarily catch 100 percent of the words perfectly.

I can tell someone is trying to interact with me, I can tell there's a car going by if I'm a pedestrian or riding a bicycle—there are all sorts of safety reasons why it makes a big difference.

My hearing aid makes me feel so much more confident. From the moment I put it on, it made such a difference.  Personally, I am less anxious, less tired, and more connected all thanks to my BAHA. It helps me to be the mom and business person I want to be. It is so powerful to have the ability to compensate for my disability.

Emily Truell lives in Wisconsin. This is adapted from her blog The “Lucky” Brain Tumor, at luckybraintumor.com. Watch her video about using a BAHA. Read more of her story in the Fall issue of Hearing Health magazine.

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