Woman shares experience with acoustic neuroma

Acoustic neuroma is a condition where a usually benign tumor grows on the nerve for hearing and balance. It only happens to one in 100,000 people per year, so identifying the problem and finding specialists who can treat it can be tough.

Here is one woman’s story of her experience with acoustic neuroma while she was in her first trimester of pregnancy.

Kris Siwek was 28 when she noticed she had lost some hearing in her left ear. Things got worse after a hearing test and an MRI that revealed a four centimeter tumor on the nerve to her inner ear.

“I couldn’t feel my face anymore, my eye stopped closing. I was having difficulty swallowing water. I couldn’t walk on my own,” Siwek said

She found acoustic neuroma specialists, Rick A. Friedman, MD, PhD, Professor of Otolaryngology and Neurosurgery, Director of Otology and Neurotology and the UCSD Acoustic Neuroma Center, and Marc S. Schwartz, MD, UCSD Neurosurgery, Co-Director Acoustic Neuroma Center.

“It’s a surprise to someone young and in the prime of their life to be told they have a tumor. I don’t call them brain tumors because they’re not in the brain but they’re in the brain space. I call them ‘next to the brain’ tumors,” Dr. Friedman explained.

“People with large tumors generally need surgery, whereas people with small tumors have a lot of options, and that could be surgery, it could be radiation, it could be just waiting and observing with MRI’s,” said Dr. Schwartz.

The surgeons can usually save patients’ hearing if the tumors on the nerve are small. But Kris’s was big. She had surgery days after her son was born, and is now deaf in one ear.
Now, she works with Dr. Friedman as a patient navigator for UCSD’s acoustic neuroma program.

“We’ve designed our program to be a safe place for them, a place where they feel like their questions are answered, their phone calls are answered, and their needs are met,” Dr. Friedman said.

Kris spends her days sharing her story and helping patients feel better.

“I think that by connecting with them and seeing someone who’s walked in their shoes and still walks in their shoes, that I can help provide them hope, I can help them understand and appreciate what their new normal is,” Siwek said.

It’s something she wishes she had when she was diagnosed.

Symptoms of acoustic neuroma are single-sided hearing loss, tinnitus, vertigo or balance problems, and swelling issues. Dr. Friedman says don’t panic if you have these symptoms, but get a hearing test and see a competent ENT. Doctors know low-dose radiation and genetic disposition can start some acoustic neuromas, but say there’s no main identifiable cause.

Contributors to this news report include: Wendy Chioji, Producer; Roque Correa, Editor and Bruce Maniscalco, Videographer.