Local support groups are an important part of the support network for acoustic neuroma and neurofibromatosis patients. For many people, the local support group is the only place where they can make personal contact with other patients who have gone through a similar experience. This article specifically looks at the Acoustic Neuroma Association and Neurofibromatosis, Incorporated and describes how these organizations help individuals.
Local support groups are a vital extension of the support network for acoustic neuroma patients. For many people, the local group is the only place where they can make personal contact with other patients who have gone through a similar experience.
Acoustic neuroma support groups
Acoustic neuromas are relatively rare, and most newly diagnosed patients feel very much alone. Providing contact with other patients provides education, support, and comfort.
The local support groups provide an opportunity for networking on all issues relevant to acoustic neuroma patients. The groups assist with social and personal support for all acoustic neuroma patients, including newly diagnosed, watch-and-wait, and previously treated acoustic neuroma patients and their family members. They provide the opportunity for personal connection and encouragement and are helpful for individuals facing the challenges of an acoustic neuroma, giving them an opportunity 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. Additionally, support groups provide the opportunity for education on pre- and post-treatment issues affecting acoustic neuroma patients with guest speakers from the health care profession.
Benefits of support groups for the acoustic neuroma patient
Communication
Acoustic neuroma patients and family members are able to communicate with each other in a nurturing, nonjudgmental environment with others who have shared a common acoustic neuroma experience. The open format allows participants to feel some degree of anonymity and to participate as they are comfortable. For some people, simply attending meetings and listening to the experiences of others can be helpful.
Sharing Information
For those who have experienced an acoustic neuroma, the value of sharing tips about everything from facial, eye, balance, headache, hearing, and tinnitus issues is invaluable. The sharing of information includes how to deal with specific problems, overcoming handicaps, and the ability to live with handicaps for a lifetime for some. The participants have an understanding incomparable to anyone else.
Education
Guest speakers from the health care profession are often a part of the local support group meetings. These medical professionals are able to present detailed information about various aspects of acoustic neuroma treatment and issues and address questions in a personal environment. For acoustic neuroma local support group meetings, guest speakers cover subjects such as treatment options, balance, facial issues, tinnitus, and hearing issues and devices.
Emotional Support
Since the acoustic neuroma patients have walked in their shoes, they can provide the important emotional support so necessary for some acoustic neuroma patients. Family members sometimes cannot fully understand the burden that acoustic neuroma patients must live with every day. The group helps patients develop realistic expectations and adjust to changing life situations, reassuring others that better times lie ahead. The healing power of groups is well documented and assists attendees by providing the mutual support that attendees provide one another.
Group Dynamics
All groups are unique yet ultimately behave similarly. Group leaders try hard not to focus on negativity at meetings and remember that everyone shares a commonality and can learn from each other. Occasionally, when a difficult person attends a meeting, it is important to recognize that this difficulty may be caused by fear. Information, support, networking with others, and reassurance can help to alleviate this fear, as well as emphasizing the positive. Groups help acoustic neuroma patients develop realistic expectations, with an understanding that sometimes things will not be exactly as they used to be. Much time is spent making connections and building relationships.
Testimonials for Acoustic Neuroma Support Group Members
The following testimonials are from acoustic neuroma association (ANA) members describing the positive impact received from attending a local support group meeting.
“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 “I remember how desperately I wanted to be able to talk with someone. I feel one of the many benefits provided by our group, is its ability to provide encouragement and compassion for the newly diagnosed.” — Greg from Washington, D.C. “I have found all the meetings that I have attended to be very informative and have made several friends. I have found it best to talk with individuals who have just started their AN journey and share my successful outcome.” — Joe from New Jersey “My greatest reward from attending this group is watching newly diagnosed patients attend a meeting and having the opportunity to meet a variety of people with many treatment types as they weigh all their options. I see the hope in their eyes appear as they learn we have all survived, and life after an AN (acoustic neuroma) is possible.” —Joan from Florida “I had great support from my family and friends, but they could not understand my concerns, thoughts, and feelings. I never knew anyone who had any type of brain tumor, so it seemed, at times, that I was going through this alone. Coming to the support group allowed me to meet people who also had a vestibular schwannoma. Even though our conditions may differ, it is a great feeling to relate to others.” —Jennifer from Florida “The group gave me hope and made me realize that I wasn’t alone. There were many others out there who shared similar problems to mine, and we were bonded on that basis. Together, we can make a difference for others who are newly diagnosed and those who have difficulty dealing with their present reality.” — Carol from Florida “It has been very meaningful for us to share and learn from others who can truly understand the daily challenges we all face with acoustic neuroma. We are constantly seeking out solutions to make our lives better. We are reminded at each meeting that there is life after acoustic neuroma!” — Gail and Elaine from Michigan
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