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How to Find an Acoustic Neuroma Support Group



Acoustic neuroma, also called vestibular schwannoma, is an intracranial tumor of the vestibulocochlear nerve, involving the vestibular part of the 8th cranial nerve. Acoustic neuromas are benign brain tumors that affect a person’s hearing and can cause a range of symptoms that include tinnitus (ringing in the ears), poor balance, vertigo, headaches, deafness. It may also affect the other cranial nerves, causing additional symptoms.

Acoustic neuroma treatment options include observation and management, tumor removal, and radiotherapy. Patients living with or recovering from acoustic neuromas may wish to pursue additional treatments and assistance with coping by visiting a medical counselor or joining a support group.

  • Observation and management. Many acoustic neuromas grow slowly and don’t significantly affect patients’ hearing or lives for many years. Routine inspection through MRI is often the best course for elderly patients or those who want to take a natural or noninvasive approach.
  • Tumor removal. Removing an acoustic neuroma through brain surgery is an option for many patients. However, nerve damage, hearing loss, and other symptoms caused by the pressure of a growing acoustic neuroma can be difficult to reverse in many patients.
  • Radiotherapy. Radiation therapy can be used on many patients as a less invasive alternative to surgery. Also called gamma knife surgery, radiotherapy delivers a single, potent dose of gamma rays that stop tumor growth without affecting the surrounding tissue.

Finding a Support Group

 While acoustic neuroma is not a common condition, there are about 3000 cases diagnosed in the United States each year. If you live in a city, suburb, or other populated area, chances are you can join a support group and attend meetings to connect with other people suffering from this disease. Family members, friends, and caregivers may also be invited to participate.

If you live in a rural or underserved area, an online support group maybe your best option, and you can still benefit from the interactions, relationships, and resources that a support group has to offer. Ask your doctor or surgeon if a support group exists in your area, as your medical team is familiar with the number of people suffering from acoustic neuroma in your region.

The National Brain Tumor Society helps connect patients with support groups in their area or within the online community, as well as offering additional resources for patients to take advantage of.

The Acoustic Neuroma Association provides information and support to acoustic neuroma patients, including information on finding, joining, or starting a support group.

If you don’t want to attend meetings or make personal connections with other patients, an anonymous support group may be for you. This allows you to become an unidentified member of an online community where your involvement level is entirely up to you, and many valuable resources will be at your fingertips. You can also connect with other patients and support through social media outlets at your involvement level.