Support and advocacy for Acoustic Neuroma (Vestibular Schwannoma) and hearing loss (especially single sided deafness)


Changing the Narrative Around Hearing Aids

For many young adults with hearing loss, a hearing aid can be incredibly empowering. It’s a chance to take back some of what you’ve lost, and assists in the difficult task of regaining your footing in a world that seldom takes hearing problems into account. And for many, the first barrier to obtaining a hearing aid is the stigma.

Hearing aids have long been unfairly labeled as a sign of age, or been burdened by stories of the technological shortcomings of their past. It goes well beyond cultural stigma; even insurance companies treat them as ‘cosmetic’ devices, underselling the incredible impact that hearing aids can have on a person’s life.

So … 

I asked a group of young adults with hearing loss if they would take a photo of themself wearing their hearing aid and feeling good. 

Here are the amazing results (most of us had to work hard to even show our hearing devices).

“When I was 27 I was diagnosed with a rare brain tumor that destroyed my hearing in one ear. At the time, I had a two year old child and was working in a customer service management position in my family business. I struggled with feelings of social isolation, grief, and failure. I worried about safety for myself and my child. I decided to pursue options for hearing device assistance because I was so unhappy with how my disability affected my life.

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 hearing aid. 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. It isn’t the same as having two functional ears, but for me, it’s a whole lot better than one!”

Emily, age 35

“I have had CROS hearing aids since 2020, two-years after I became 100% deaf in my right ear, due to my Acoustic Neuroma brain surgery. CROS hearing aids are for individuals who have single-sided deafness. These hearing aids reroute sound that would typically be heard by an individual’s deaf ear, over to the ear that still has the ability to hear sound.

My CROS hearing aids allow me to feel more comfortable in social situations. They have relieved a lot of social anxiety that has accompanied becoming a young person with unilateral hearing. It’s been a major adjustment to be put in environments where I can’t hear the direction of where voices are coming from, nor hear people who talk to me while positioned on my deaf side. While CROS hearing aids will never give me back my ability to hear out of my right ear, I have seen a drastic improvement in being able to hear people who speak to me from all directions while wearing them.

I initially worried about people noticing that I wear hearing aids, as I started wearing them at such a young age; but they are so small that I’ve never had anyone notice I’m wearing them. However, I think that wearing hearing devices that people may be able to see is extremely courageous and shows off AN patients’ experiences as absolute warriors who continue to fight through this difficult battle.”

Abby, age 24

“I’m 27, and I got my hearing aids when I was 25. They have helped me tremendously in my job as an ICU nurse. My hearing aids increase my awareness of people on my deaf side, and increase the volume of conversations in social settings. I’m also not as likely to shout at people because I can better hear myself speak! I was worried about them being super noticeable, but people rarely see them.”

Rebecca, age 27

“I first got hearing aids at age 34 due to hearing loss from Lyme Disease. I’m a teacher, so being able to hear and distinguish between different voices is vital to my job. Getting hearing aids has allowed me to continue doing a job that is super important to me!”

Kjersten, age 38

Sarah, age 40

“I was diagnosed with an Acoustic Neuroma at 26 and my hearing was completely gone by the time I had surgery to remove most of it at 30. I would be nervous trying to do something like order food in a noisy restaurant without my husband to help me, but my hearing aid has given me more confidence to do something like that on my own.

I am also a musician and while it’s best to have two working ears in that field, my hearing aid allows me to keep performing as I did prior to becoming single sided deaf.”

Stephanie, age 34

“I was born with hearing loss. I started wear analog hearing aids at the age 3. I started wearing digital hearing aids when I was around 25. I’m wearing Phonak Paraside Hearing Aids. I wear my hearing aids from when I first get up in the morning so I can hear things until night time. I normally wear my hearing aids about 14 hours a day.”

Dawn

“I worked very hard to find a hearing aid that would work for me. I have had a serious hearing loss in my non-AN ear for over 25 years. I was ok, with one “good” ear. After SRS for my AN, I lost some of my hearing in my “good” ear and felt I really needed a hearing aid. 

I have abnormally tiny ear canals—I had a lot of trouble getting fitted with a hearing aid. I tried numerous brands of behind the ear aids. The molds/domes would easily fall out of my ears. Between masks, glasses, scarves the hearing aids weren’t secure. I could have tried deafmetal.com, but I didn’t know about it at the time!! 

I finally got fitted with a Starkey Livio AI rechargeable hearing aid. It never falls out- it is very secure. Starkey has been making custom hearing aids longer than any other company. I found this solution myself. “

Rachelle

If you would like to join in showing off your hearing device and sharing your story please contact me using the form below.

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About Me

Emily was diagnosed with a brain tumor at age 27 and decided to make that experience worthwhile by paying it forward to other brain tumor warriors. She is passionate about supporting people and advocating for hearing assistance around motherhood and running a family business.