SAN DIEGO, Calif. (Ivanhoe Newswire) — 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 shared.
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.
Dr. Friedman continued, “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.”
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,” said Kris.
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.
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ACOUSTIC NEUROMA: BRAIN SPACE TUMOR
REPORT #2533
BACKGROUND: Approximately one person in every 100,000 in the United States is diagnosed with acoustic neuroma each year. While they can develop at almost any age, acoustic neuromas most commonly occur between 40 and 50. Recent studies have shown that more cases are being diagnosed partly due to advances in MRI scanning. These tumors usually grow slowly and do not spread through the body. They generally affect hearing, balance and facial nerves. Although acoustic neuroma is not cancer, the tumors can be dangerous if they grow large and press against the brainstem or brain. The diagnosis of an acoustic neuroma is often triggered by a patient’s symptoms. The most common symptom, occurring in 90 percent of patients, is hearing loss. The hearing loss is progressive in most patients, but in approximately 12 percent of patients the hearing loss may occur suddenly. Other symptoms include ringing in the ear, dizziness and difficulty with balance.
(Source: https://www.mdanderson.org/cancer-types/acoustic-neuroma.html and https://www.hopkinsmedicine.org/otolaryngology/specialty_areas/otology/conditions/acoustic-neuroma/index.html)
DIAGNOSIS AND TREATMENT: Acoustic neuroma is often difficult to diagnose in the early stages because signs and symptoms may be subtle and develop gradually over time. Common symptoms such as hearing loss are also associated with many other middle and inner ear problems. A doctor may order a hearing test. In this test, conducted by an audiologist, you hear sounds directed to one ear at a time. The audiologist presents a range of sounds of various tones and asks you to indicate each time you hear the sound. Magnetic resonance imaging (MRI) is the preferred imaging test to confirm the presence of acoustic neuroma and can detect tumors as small as 1 to 2 millimeters in diameter. Kris Siwek, acoustic neuroma patient, shares how she showed significant neurological symptoms like her eyes not blinking at the same time and one eye was bulging open. Her tumor was within the cranial nerve bundle that was affecting her facial function and hearing. She had lost almost all of her hearing leading up to her surgery, which is not recoverable once it occurs. Acoustic neuroma treatment may vary, depending on the size and growth of the acoustic neuroma, your overall health, and if you’re experiencing symptoms. To treat acoustic neuroma, your doctor may suggest one or more of three potential treatment methods: monitoring, surgery or radiation therapy.
(Source: https://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/diagnosis-treatment/drc-20356132)
NEW DEVICE FOR HEARING: Patients with rare brain tumors on the auditory nerve now have an option to prevent complete deafness at UC San Diego Health. The device, called an auditory brainstem implant, or ABI, fits behind the ear and connects directly to the brainstem. The device enables patients with neurofibromatosis type 2 (NF2) who develop bilateral hearing nerve tumors to be aware of environmental sounds, such as a door opening, a phone ringing or a car approaching. “An auditory brainstem implant can have a profoundly positive impact on a patient’s quality of life,” said Marc Schwartz, MD, neurosurgeon at UC San Diego Health. NF2 is an inherited disorder. There are two forms of the disease. In one form, patients develop growths called acoustic neuromas in both ears, which usually leads to complete deafness. A more aggressive form of the disease results in tumors throughout the brain and spine. “Auditory brainstem implants can help restore sound perception to patients with NF2. This is critically important as a matter of safety and the ability to communicate with the world,” said Rick Friedman, MD, PhD, neurotologist. “These implants are appropriate for NF2 cases where the hearing is already lost or when the tumors have become so large that surgery is indicated and hearing preservation is not possible.”
* For More Information, Contact:
Rick Friedman, MD, PhD Gabrielle Johnston, (858) 249-0428
