Is a support group for me?
"We have faced a common trauma – coping with an acoustic neuroma. Face-to-face group meetings give the opportunity to be with others who truly understand. By sharing how we have coped and been helped by receiving medical information from professionals who may be new to us, we can restore ourselves by the strength furnished by a caring community."
Ginny Fickel Ehr, ANA Founder
“Support Group” does not fully describe the extent of the support that groups provide. Although support is a big part of what groups do best, they provide so much more! Encouragement, networking opportunities and outstanding presentations from a variety of guest speakers are highlights of these meetings.
If you haven’t attended a meeting yet, perhaps you are unsure about what to expect or whether a group meeting is right for you, please take time to consider the following information.
Who can attend a support group? Support groups are open to all AN patients, family members, caregivers and interested persons. We welcome AN patients at every stage of their journey, whether just diagnosed and seeking information, or are many years post-treatment and want to support and encourage new attendees. There is no charge to attend.
How often do support groups meet?
Groups vary in the frequency of meetings. Some groups meet every other month, quarterly, or twice a year, depending on the needs and desires of the group members and the availability of the leaders/facilitator(s).
What is the format of the support group meeting? Group meetings vary based on the educational topic and guest speaker. Some meetings may focus on an educational format only while others may be strictly supportive; frequently meetings feature elements of both. The supportive meetings feature an open format, which allows attendees some degree of anonymity, participating only if they are comfortable. For some, simply attending meetings and listening to the experiences of others can be helpful.
What types of educational topics are discussed? Who are the speakers? Various aspects of AN treatment and issues are presented, often by guest speakers from the health care profession. Subjects such as treatment options, balance, facial issues, tinnitus and hearing issues and devices are presented, with time to discuss issues and address questions in a personal environment. Networking and caring and sharing time provides opportunities to learn new ways to handle challenges cope with changes and maintain new behaviors. A small tip goes a long way to make a patient feel normal again.
Who are the support group leaders and co-leaders? Leaders and co-leaders are ANA volunteers who are AN patients, family members, and/or caregivers. Most importantly, they are people just like you! Individuals leading their own busy lives when one day they are faced with an unexpected challenge – the diagnosis and treatment of an acoustic neuroma. They volunteer their time and energy to give back to other acoustic neuroma patients. These special individuals schedule and coordinate support group meetings that provide opportunities for education, encouragement and networking in their local communities.
What are the advantages of attending a support group meeting? Nothing can replace the face-to-face interaction, warmth and closeness that can develop when people interact on a personal level, in a nurturing, non-judgmental environment. For many the local group is the only place to make connections with other acoustic neuroma patients who have gone through a similar experience; they provide emotional support that sometimes even family members cannot fully understand. There is mutual support, understanding and reassurance that help to develop realistic expectations and adjust to changing life situations. Support groups have participants from a specific geographic location, so there is a familiarity that comes from shared community experiences that can strengthen bonds among participants.
Support groups are available across the U.S. and we welcome you to attend a meeting soon.