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How my mom dealt with acoustic neuroma and hearing loss

acoustic neuroma and hearing loss
According to the National Institute on Deafness and Other Communication Disorders (NIDCD), “About two to three of every 1,000 children in the United States are born with a detectable level of hearing loss.” Also, the Mayo Clinic says that one in two people over the age of 75 have a hearing loss due to aging or exposure to loud noises over a lifetime.

These are the types of hearing loss I think are most commonly talked about, but hearing loss can also occur completely unexpectedly. This is what happened to my mom when she had acoustic neuroma

Unexpected Phone Call

In October of 2018, I got a phone call late at night that I never expected to receive: 

Mom: “Hi Ash, what are you up to?”

Me: “Oh, just drinking tea and getting ready for bed. What about you?”

Mom: “Well, I went to Urgent Care because I thought I had a sinus infection. You know, the side of my face was feeling tingly. Because of my age, they thought I was having a stroke, so they did a CAT scan and um, they found a tumor.”

Acoustic Neuroma Diagnosis

My heart sank to my toes. I stayed up the rest of the night waiting for updates as she was rushed to UW Hospital in Madison, Wisconsin, about 40 minutes away from my hometown. After several more tests, it was found that she had acoustic neuroma (also called vestibular schwannoma). Acoustic neuroma is a slow-growing, non-cancerous tumor that develops on the nerve that goes from the inner ear to the brain. Symptoms — which my mom experienced — can include loss of balance, difficulty hearing, and numbness in your face.

After her successful 12 hour surgery by a team of world-renowned surgeons, Dr. Mustafa Baskaya and Dr. Mark Pyle, it was expected that my mom would experience hearing loss and/or partial facial paralysis. In the end, she had hearing loss. She has recovered amazingly and has been able to return to her job as a third-grade teacher. I interviewed my mom to fully get her perspective about her experience.

Q: Looking back, when did you first start noticing things were different with your body, be it your hearing, balance, or facial nerves? Anything else?

A: “I started to notice that hearing was difficult for me about five years ago. It was especially hard to make out whispers. Any balance issues I had I attributed to aging. The tumor probably grew for decades, but during the month of September, something really changed. According to the doctors, the tumor starts growing on the auditory nerve and keeps growing until it starts pushing into the brain. Looking back, it all kind of made sense why I felt the way I did.”

Q: What were you thinking when they first told you they found a tumor?

A: “I felt shocked. Pure disbelief. I kept thinking, ‘I have to go to school tomorrow.’  I didn’t want to have to call my daughters and family and tell them the news.”

Q: Before your surgery, how did you prepare yourself? Did you find anything that helped calm any fears you had about the procedure?

A: “I purposely did not look up things on the internet. I didn’t want to see any horror stories about it. The only thing I did watch was the video of actor Mark Ruffalo’s interview about his experience with acoustic neuroma.”

Q: In the days leading up to your surgery, how did you feel? What thoughts were going through your head at that time?

A: “It was one week between the diagnosis and my surgery. I was disappointed that I had to miss the Wisconsin vs. Nebraska college football game and asked more than once if I could go back to school to see the kids and teach for a couple of days, but the doctors said no. I also felt a sense of acceptance as I just wanted to get the surgery over with because there were no other options. It was very cut and dry. The tumor was four cm (about the size of a plum) so it wasn’t like we could ‘keep an eye on it.’ It gave me some peace of mind knowing there were no decisions that had to made or other options to consider.

It was reassuring to know that I was in the best place I could be with the best doctors. People come from all over the world to see the doctors at UW Hospital. They kept telling me that I was a ‘classic case’ of acoustic neuroma, which felt good to hear since it wasn’t ‘We don’t know what’s wrong with you.’ They did a hearing test to decide how they would proceed with the surgery and found that I already had a significant hearing loss in my left ear. Therefore, the preferred method of surgery would be to sacrifice all of the hearing in my left ear to ensure the entire tumor was removed. Even though I obviously didn’t want to lose my hearing, when you’re at the hospital you quickly realize how bad the alternatives could be.”

“Even though I obviously didn’t want to lose my hearing, when you’re at the hospital you quickly realize how bad the alternatives could be.”

Q: How has your life changed after the surgery?

A: “It is immensely better. You really expend a lot of energy just trying to feel normal [when diagnosed]. In September, I was on a wobbly ship with occasional double vision, face tingling, and trouble just walking straight through a door without bumping into things. I remember I went to go sit on the couch and just fell off onto the floor. It was crazy because a month before, I was standing on a ladder, setting up my classroom, but within just one month it got so much worse.

acoustic neuroma

Luckily, since the surgery I no longer have ringing in my ears, the dizziness is significantly better, and I feel like I can walk into a room without needing to touch furniture to guide me. It feels good to get up in the morning and feel more solid on my feet. Initially, when I came home, I was taking lots of different medications but now I don’t take anything. Also, whatever hearing I had in my left ear is now gone, but it doesn’t feel like a drastic change for me. The weird things are not being able to tell where a sound is coming from, common sounds sounding different, and feeling confused if multiple conversations are happening on my good side.”

One option for my mom is a Bone Anchored Hearing Aid (BAHA), which requires outpatient surgery to insert a titanium plate in the patient’s head. Then, an external “sound processor” goes on the outside of the patient’s head and it transmits vibrations to the titanium plate and the bone. The vibrations send sounds from the deaf side to the hearing side. This procedure is pricy (about $40,000) and my mom’s insurance does not cover it, so this may be an option in the future if insurance or pricing changes. 

Q: Are you worried about how your teaching career might be affected by your hearing loss now?

A: “Some situations will be more difficult. Noisy situations will be hard, but individual/small groups are easier for me. I’m fortunate to have normal hearing in the other ear. I’ve been learning compensation techniques with the good ear and I try to use more visual cues. I noticed that before my surgery, I was often asking people to repeat things. Now I wonder why I didn’t get my hearing tested five years ago, but I guess I just attributed it to aging. Plus I teach third graders, so I’m always saying, ‘What?’ anyway. I once had a substitute teacher tell me I was a pro at ignoring a particular student’s negative behavior, but I probably just couldn’t hear it.”

Read more: My experience with sudden deafness

Q: Do social settings feel more challenging now?

A: “In a noisy setting it is more difficult. I try to seat myself on my good hearing side and I have no problem telling people, ‘It’s easier for me to hear if I sit here.’ Sleeping is easier if I sleep on my good ear so that’s actually nice!”

Q: Do you have any words of wisdom to share after this experience?

A: “If you notice changes in your hearing, don’t ignore it — talk to your doctor or see an audiologist. Lastly, I have such an appreciation for feeling good and having my symptoms gone. As my nurse practitioner said, ‘You’ve been given a new lease on life, take advantage of it!’ Life is good.”

Every day we are so grateful that my mom is in good health now. If you or someone you know has been diagnosed with acoustic neuroma, feel free to reach out to me or my mom, Renee McGoey, at rmcgoey@fontana.k12.wi.us.  

What was your experience with acoustic neuroma?

Ashley McGoey
Author Details
Hi! My name is Ashley. I am 24 years old and I was born with a sensorineural hearing loss. I have worn hearing aids since I was 3. Growing up, I struggled to accept my disability and feel good about myself because I felt like I was the only young person with a hearing loss. I wish that I had been able to connect with people who have the same hearing loss as I do, so that we could feel less alone.
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Ashley McGoey
Hi! My name is Ashley. I am 24 years old and I was born with a sensorineural hearing loss. I have worn hearing aids since I was 3. Growing up, I struggled to accept my disability and feel good about myself because I felt like I was the only young person with a hearing loss. I wish that I had been able to connect with people who have the same hearing loss as I do, so that we could feel less alone.
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