The USC Acoustic Neuroma Center provides Neurofibromatosis type 2 patients with a unique level of care and expertise in the management of their condition.
What is Neurofibromatosis 2?
Neurofibromatosis type 2 (NF2) is a genetic disorder that causes largely non-cancerous (benign) tumors of the nervous system including the brain, spinal cord and nerves.
It is estimated that approximately 1 in every 25,000 people worldwide is affected by this disorder regardless of sex, race or ethnic background. Of these cases, half are inherited or passed down from a parent with NF2. The other half is a result of a spontaneous genetic mutation without family history.
The onset and course of NF2 varies from person to person. Most individuals with NF2 experience their first symptoms in their teenage years or early 20’s. However, some individuals may not become symptomatic or have problems until their 40’s or 50’s.
Almost all affected individuals develop acoustic neuroma tumors (vestibular schwannomas) on both sides of the brain. Early signs of acoustic neuromas can include: hearing loss, tinnitus (ringing in the ear) and balance problems. Although bilateral vestibular schwannoma tumors are most common, persons with NF2 can develop tumors on other nerves. The symptoms depend on their location.
What can the USC Acoustic Neuroma Center provide NF2 patients?
The USC Acoustic Neuroma Center partners with its patients and their families for life. The center provides patients a collaborative and compassionate space for all their needs.
Keck Medicine of USC and Children’s Hospital Los Angeles Neurofibromatosis Programs partner to provide excellent care to adults and children with NF1, NF2 and Schwannomatosis. Clinicians collaborate between institutions to ensure that each patient has access to the most current medical and surgical treatments that are appropriate for their case throughout all stages of life.
Both institutions provide multi-disciplinary programs with access to subspecialists with expertise in NF in numerous areas including otolaryngology/ENT, neurology, neuro-oncology, audiology, neurosurgery, medical genetics, ophthalmology and orthopaedics.
CHLA is a member of the Department of Defense (DOD) NF Consortium, which coordinates multi-center clinical trials for individuals with NF1 and NF2. CHLA is the only DOD NF Consortium site on the West coast and currently has a clinical trial open using Avastin in individuals with NF2 and progressive acoustic neuromas with hearing loss.
What are my treatment options?
Treatment options for associated acoustic neuromas includes watchful waiting for non-growing and asymptomatic tumors in patients that choose that approach. Most often we recommend proactive surgical management of small tumors for hearing preservation and improvement in quality of life. In some cases, chemotherapy is an option. Radiation is rarely recommended due to slightly greater risk of malignant transformation and the high-published failure rate. We work hand in hand with our patients and their families to development an individualized and comprehensive treatment plan.
Can I contact the center for a consultation?
Our medical professionals are happy to share their expertise. The USC Acoustic Neuroma Center offers an initial, free-of-charge consultation over the phone with patients or their family members.
Consultation includes a complete review of the patient’s medical records, hearing tests, audiograms and MRI scans, previous medical history and any relevant medical histories of family members. An introductory discussion about the potential course of care ─ including observation, surgery or radiosurgery ─ is also included.
For more information about having patient records reviewed at no cost, please call (323) 442-4827.
How do I learn more?
The following links can provide additional resources: