Lucky Number Seven: An Acoustic Neuroma Journey

I was diagnosed with a 3cm acoustic neuroma (vestibular schwannoma) brain tumor when I was 27. My brain tumor was discovered due to hearing loss. I realized that I could no longer hear on the phone on my left side. I was worried I was being a hypochondriac when I thought I couldn’t hear.

I didn’t even make my own doctor appointment, I just told my family doctor at my daughter’s well child visit. He kindly ordered a hearing test for me. The hearing test showed I had severe hearing loss on one side, so they sent me to an ENT doctor. The ENT did a test — an auditory brainstem response test — on my hearing nerve to see if it was functioning. When that came back inconclusive, he ordered an MRI on my brain “just to double-check.” He told me in his entire career, he had only seen six of these rare brain tumors, so that likely wasn’t the cause. I was lucky number seven.

The ENT doctor had informed me that he was going to be on vacation, so I wouldn’t get my MRI results in two weeks. However, when his partner saw the brain tumor on my scans, he called me with the results the following morning and asked me to come in that day. He told me that I needed to decide if I wanted to have surgery to remove the tumor or radiation. He scheduled appointments with both a neurosurgeon and a radiation oncologist to discuss my options. The best advice he gave me was to choose the treatment path I could live with and then don’t look back.

On my way to discuss my brain tumor diagnosis, I found the Acoustic Neuroma Association online. I am so incredibly grateful I found this organization. It helped educate me on options, outcomes, questions to ask, and resources I would need, and most importantly, it connected me to other people in the same situation. I literally cannot say enough good things about the Acoustic Neuroma Association.

Treatment Decisions

I spent time meeting with multiple doctors and doing a lot of research. I ultimately did not feel comfortable with radiation as my tumor was on the edge or over the edge of the line, where it would be too large for radiation to be safe. I also did not love that I was so young and we don’t have great data on the long-term effects of radiation. I felt nervous that radiation effects could occur weeks after treatment, and I live a long distance from medical care. Lastly, I wanted the closure of knowing the tumor was removed.

I also spent time talking to multiple surgical teams and ultimately chose a team I felt extremely comfortable with. They knew their stuff and regularly dealt with acoustic neuromas (they did at least one acoustic neuroma surgery a week). Because these tumors are rare, it is extremely important to choose a team that has a lot of experience for outcomes. Many neurosurgeons have never dealt with these or only have seen one or two. I chose to stay in my geographic area because, for my life as a mom and family business owner, traveling for treatment would have been a large hardship.

My doctors gave me the option to choose my surgical approach. There are three surgical approaches for acoustic neuromas, and my tumor was too large for one of them to be an option. My ENT surgeon thought to do retrosigmoid to attempt to preserve my hearing, but the neurosurgeon recommended translabyrinthine because it would give him a better view of my facial nerve and hopefully help him preserve my facial function. The downside to translab is that single-sided deafness is certain after the surgery as the surgical approach enters through your hearing structures and destroys them. It was extremely hard and emotional to make the decision to destroy my hearing, but I chose translab. I had 90% hearing loss in that ear, and I really wanted to preserve my facial function.

I had great surgery results. They were able to remove the entire tumor and preserve my facial nerve. I had a bumpy journey in the immediate time after surgery. I had a cerebral spinal fluid leak while in the hospital post-op and ended up needing a 10-day stay at the hospital. CSF leaks are very painful. I do not recommend it to a friend. As expected, I had some balance difficulties (the tumor is on the balance nerve, and the nerve is cut during surgery). I did six weeks of vestibular therapy after discharge and cannot recommend it enough. I went from a bit tippy walking to riding my bicycle by the end of therapy, which was huge as I love riding my bike, and it is my primary work transportation. I also struggled with headaches for about the first year to a year and a half, with them slowly lessening from daily to weekly to monthly to now only when I am under the weather. And, of course, I am single-sided deaf.

Life After Surgery

Recovery is challenging. I often feel doctors don’t paint a very realistic picture. I was entirely off of work for about 5-6 weeks. I then was part-time at work for a couple of weeks. Around 7-8 weeks post-op, I was back full-time. But being back at work doesn’t mean being 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 is a lot going on, such as the brain trying to handle the changes with the balance nerve gone. There was also a big learning curve in figuring out how to deal with single-sided deafness. Hearing takes a lot more work, and it took time to figure out the tricks and adaptations that help. I struggled with finding the balance of pushing myself to strengthen and recover skills but not pushing too hard and overdoing and setting myself back. The line could change day to day on what was too much for me, as recovery is often not a straight line. I also felt that once I was through the biggest part of the “emergency,” I had to take time to sort through my emotions and grieve what I lost. It is definitely a process, and brain surgery is not something you typically speedily bounce back from. It was important to give my body grace and time.

These days, I am well and living a full life where my brain tumor is a chapter in my story rather than my definition. I have had a second child since my treatment. I sometimes work more hours than I probably should, but I can work crazy hours if I so desire. I do yoga regularly (even paddleboard yoga and aerial yoga), which makes a huge difference in my balance. Six months after my brain surgery, I opted to get a bone-anchored hearing aid (baha) to help with my hearing loss. I absolutely love my baha. I wear it daily, and it makes a big difference for me, especially at work.

I decided I wanted to help out other brain tumor warriors and became a volunteer with the Acoustic Neuroma Association. I volunteer with the association in and variety of ways, and it has been a great joy in my life to connect with fellow young adult Acoustic Neuroma warriors. I appreciate the opportunity to take something lousy and turn it into a chance to help someone else.

While a brain tumor diagnosis is a very challenging journey, life can be great post-brain surgery.

TAGGED WITH: acoustic neuroma

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.