Acoustic Neuroma Association
600 Peachtree Parkway
Suite 108
Cumming, GA 30041

Another Story of Remarkable Irony
Darren Raber

After reading A.J. Blum's article, A Remarkable Irony, on the ANA website, I felt we had something in common. It inspired me to finally share my story - also one of remarkable irony.

To begin, I am a very proud father of two deaf children that have cochlear implants. Since I'm "deafinitely left" myself, I have a greater appreciation for the hardships my children faced growing up and how they responded to those challenges.  I am so proud of how special they are. Also a remarkable irony - I have a brother that also had acoustic neuroma. His surgery was about nine years ago.

 

My AN journey began when I went for a routine ear cleaning in the spring of 2017 which led to an audiogram.  The audiogram revealed moderate hearing loss and a hearing aid was suggested.  I decided to delay the hearing aid, but over the course of the next six months my hearing worsened.  A re-test prompted an MRI. The doctor remembered me mentioning that my brother had an acoustic neuroma, and he welcomed me as a new member to the acoustic neuroma club, too.  Familiar with my brother's experience, I was  relieved that it wasn't a malignant tumor.

Looking back, the loss of hearing, persistent balance issues and vertigo when performing certain outdoor activities all began to make sense. Over the years, I had just dismissed these changes or blamed them on old age.

I decided to watch and wait. During that time, I chose to not think about my tumor.  I was always willing to discuss my AN, though. I wanted to be able to explain to others that I could not hear them correctly or may have misinterpreted them. I especially wanted to be able to explain those embarrassing times when I lost my balance!

In January 2021, I received the news that I needed to make a decision. This came as a surprise. After all, I had slow but very consistent growth for the last three years. If I continued to observe, the tumor might grow too large to be a candidate for radiation and surgery would be my only option.

My wife and I decided to get a second opinion. After all, we had one shot at this. I had also been researching hearing preservation surgery. There was so much to consider.

One day, an intervention occurred. I happened to run into our hospital's radiation oncologist (the hospital I am employed at) and I told him what was going on. He suggested a consult with OSU Wexner Center to get another opinion, to help me consider all my options and put a plan in place.

The OSU team thought Gamma Knife was my best option. I was pretty impressed the neurosurgeon didn’t recommend surgery!  We discussed tumor size, location and my symptoms.  Hearing preservation surgery was not really an option anymore, so that made the decision easier.

Because of logistics and other considerations, I delayed Gamma Knife for about two months - I was so proud that I didn’t talk myself out of it!  I had treatment on April 28, 2021 and the doctors, nurses and staff were incredible and helped us feel at ease with our decision and making sure I was comfortable.

I am still recovering and it is going well. Since I've never had many medical issues, this was a HUGE crossroad for me. My best advice is to submerge yourself into all the possible options and seek hospitals that specialize in AN treatment. That course of action allowed me and my family to feel completely comfortable and at peace with our decision.

Now that I'm on the other side, I'm glad to be an AN warrior and contribute my story. I hope it will be helpful to others that are just  starting their journey.

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To connect with any of the patients featured, please contact ANA at 678-331-5369 or email volunteers@ANAUSA.org.

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