72.1 Introduction

You have just been told you have a brain tumor. It is called a vestibular schwannoma (VS), also known as an acoustic neuroma. The diagnosis leaves you and your family numb with fear and disbelief. Your mind is flooded with questions. Why me? How did this happen? Sure, your hearing has been gradually declining and it’s been a little harder to hear over the phone lately. But a brain tumor? You are informed that there is no known cause and, though benign, the tumor may grow. You’ll feel an urge to take action, but where do you even begin?

The physician who frequently deals with cranial tumors may be relieved that the etiology of the patient’s symptoms is discovered and that the cause is a benign brain tumor. The patient, on the other hand, has never heard of a VS and may be devastated by the words “brain tumor” and all the new and uncertain information, fearing the worst. Never knowing anyone who has been diagnosed and treated for a VS makes the future feel very uncertain.

Diagnosis and treatment of a VS is a pivotal event in the patient’s life. Much of the rest of his or her life is defined in terms of “before or after my VS.” Whether pre- or posttreatment, many patients and their caregivers live a life where the impact of their tumor is felt every day as they adjust to their new normal situation (Fig. 72‑1 ). After treatment, the physician’s appraisal of the patient’s results may be quite positive with the tasks completed—the brain tumor treated—while the patient’s assessment of the same results can differ. Treatment may lead to hearing loss, tinnitus, balance issues, or perhaps some loss of facial function. These issues among others are often a source of ongoing distress to the VS patient.

72.2 Acoustic Neuroma Association—www.ANAUSA.org

The Acoustic Neuroma Association (ANA) was established to provide educational information and support in an effort to improve the patient experience—both pre- and posttreatment. Early patient education can provide realistic and accurate expectations regarding potential treatment options and long-term outlook. In addition, networking and social support offers opportunities for positive interaction with other VS patients who can offer valuable insight and reassurance to the newly diagnosed patient. Finally, finding a medical provider with substantial experience in VS treatment is critical to the patient’s long-term health and well-being. The ANA was established to improve patients’ overall experience with VS, and remains an important medium for connecting patients to other patients and to medical professionals.

The ANA was founded in 1981 by a VS patient, Virginia (Ginny) Fickel Ehr in Carlisle, PA. She found no patient information or patient support available when she had surgery for a VS in 1977. Ginny experienced significant neurological deficits before and after surgery and sought information about VS that could be understood by a layperson; however, none was available at that time. From this experience, she resolved that future patients diagnosed with VS would not face the same difficulties. With the support of her surgeon, she assembled eight patients who made up ANA’s first volunteer Board of Directors. The association was incorporated in 1981 and received tax-exempt status 501(c)(3). The ANA was thus founded to provide ongoing support and services to VS patients, family members, and caregivers through their VS journey. A mission statement was subsequently adopted by the Board in April 2006: The mission of Acoustic Neuroma Association is to inform, educate, and provide national and local support networks for those affected by acoustic neuromas, and to be an essential resource for health care professionals who treat acoustic neuroma patients.

Since its inception, the ANA has worked with tens of thousands of patients worldwide. Today, the ANA is the premier organization for VS patients and actively serves a membership of nearly 5,000 and communicates directly with nearly 10,000 VS patients, friends, family, and medical professionals. The ANA website receives 60,000 visits monthly, and ANA coordinates nearly 60 registered support groups. Patients involved in the ANA consistently report that they:

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  Find encouragement through the ANA support groups.

  
  
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  Appreciate the realistic and practical patient information the ANA provides.

  
  
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  Are grateful for the connection ANA provides to medical professionals who excel in VS treatment and posttreatment care, resulting in improved outcomes.

  
  
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  Are motivated by helping others and learning more, as they were helped, thus perpetuating the existence and need for the ANA.