Mission, Vision & Values
The Acoustic Neuroma Association, the premier resource to the Acoustic Neuroma community, informs, educates and supports those affected by Acoustic Neuroma brain tumors.
To continually improve the lives of Acoustic Neuroma patients and their families through communication, support, innovation and partnerships with the medical community.
Respect: to honor the needs and privacy of acoustic neuroma patients
Professionalism: to maintain high ethical standards at all times
Objectivity: to remain free of bias in everything we do
Patient Centricity: to place the patient and their community at the forefront of all ANA efforts
Leadership & Staff
Board of Directors
Chad Nye - Lakeland, FL
John Gigliello - Niskayuna, NY
David Puzzo - St. Petersburg, FL
Members at Large
Luke Bagato – Western Springs, IL
David Begnaud – West Hollywood, CA
Marla Bronstein - Bellingham, WA
Meredith Mueller Daly - Atlanta, GA
Neil D. Donnenfeld - Swampscott, MA
Roberta C. Hutchings - South Bend, IN
Leah Keith - Los Angeles, CA
Chad Nye - Lakeland, FL
Joel Perrell, Jr. - Baltimore, MD
Miranda Sacharin – New York, NY
Tom Sattler - San Francisco, CA
Scott Van Ells - Flagstaff, AZ
Joseph A. Vargo, III - Cresson, PA
Deborah R. Walls - New Whitehead, IN
Immediate Past President
Alan Goldberg - New York, NY
Virginia Fickel Ehr - Carlisle, PA
Medical Advisory Board
Calhoun D. Cunningham, III, MD, Duke Health, Raleigh, NC
David S. Haynes, MD, FACS, Vanderbilt Medical Center, Nashville, TN
Medical Advisory Board Members
Siviero Agazzi, MD, FACS, University of South Florida Health, Tampa, FL
Chrisfouad R. Alabiad, MD, Bascom Palmer Eye Institute, Miami, FL
Babak Azizzadeh, MD, Center for Advanced Facial Plastic Surgery, Beverly Hills, CA
Steven D. Chang, MD, Stanford Health Care, Palo Alto, CA
Christopher J. Farrell, MD, Thomas Jefferson University Hospital, Philadelphia, PA
Steven L. Giannotta, MD, Keck School of Medicine of USC, Los Angeles, CA
Shannon E. Kahn, MD, Emory Healthcare, Atlanta, GA
Joseph J. Montano, Ed.D., Weill Cornell Medical College- NY Presbyterian Hospital , New York, NY
Ravi N. Samy, MD, FACS, UC Gardner Neuroscience Institute, Cincinnati, OH
Marc S. Schwartz, MD, UC San Diego Health, La Jolla, CA
Patrick Shumrick, DPT, The Center for Balance and Dizziness, Cincinnati, OH
Kris Siwek, UC San Diego Health, La Jolla, CA
Rafael J. Tamargo, MD, Johns Hopkins Medicine Baltimore, MD
Allison Feldman - CEO
Jennifer Farmer - Director of Programs and Development
Melanie Hutchins - Manager of Volunteer Programs
Stephanie Rommer - Project Manager
Kristin von Meyer - Office Specialist
Holly Stone - Assistant
Melissa Baumbick - Communications Specialist
Choosing a Healthcare Provider
It is the individual's responsibility to verify the qualifications, education and experience of any healthcare professional, hospital, or other provider of services and products and to assess the suitability of any services or products. In the case of doctors, information is generally available from state medical boards concerning a doctor's number of years in practice, where the doctor went to medical school, if there are any open complaints against the doctor or whether the board took disciplinary action against the doctor's license. Similar information may be available from state licensing authorities concerning other healthcare providers. Read more about researching a provider. Below are a series of questions to consider when choosing a healthcare provider.
- Does the medical team have substantial acoustic neuroma experience?
- Is the physician Board eligible or Board certified in the related specialty?
- Has the physician received specialized training or have significant ongoing practice experience related to acoustic neuroma treatment?
- Does the treating physician use a team approach for treatment where applicable, with access to a team or referrals, with the patient having access to all members of the team? In the case of surgery, a neurotologic and neurosurgical team should be used. In radiosurgery, a team would consist of the radiation oncologist, neurosurgeon or neurotologist and radiation physicist.
- Are specialists skilled in a variety of rehabilitation issues (facial reanimation, cognitive, vestibular balance, hearing, tinnitus, headache and physical therapy) available before and after treatment as needed?
- Is the physician willing to share the number of cases and outcomes with the patient?
- Is the physician willing to discuss all treatment modalities with the patient, where applicable, and willing to explain why the physician is making the specific treatment recommendation?
- Does the physician allow sufficient time during the initial consultation and subsequently if need be, so that the patient feels all of the patient’s questions have been answered satisfactorily prior to making a decision about treatment?
- Does the patient feel comfortable with the physician’s experience, demeanor, and responsiveness to questions?
Licensing requirements for physicians vary from state to state. To facilitate the verification of the license status of practitioners, most states provide Medical License Lookup web tools. License lookup tools for other health practitioners can be found at the Federation of State Medical Boards.
Acoustic Neuroma Association® was founded in Carlisle, PA in 1981 by an acoustic neuroma patient, Virginia Fickel Ehr. She found no patient information or patient support available when she had surgery for the removal of an acoustic neuroma in 1977. She resolved that future acoustic neuroma patients should have easy-to-read medical material about their condition, and support and comfort from each other. With the help of her physician, she contacted eight other patients and formed the organization.
The association is incorporated and is a 501(c)(3) non-profit organization. The patient-focused, member organization now serves nearly 5,000 members including acoustic neuroma patients, family members, friends and health care professionals providing information regarding all treatment types. It is governed by an all-patient (or family member) Board of Directors and is operated by a small staff in metropolitan Atlanta, GA.
With assistance from a number of leading surgeons and patient volunteers, ANA was incorporated in 1981. During her decade and a half of ANA leadership, Ginny contacted thousands of acoustic tumor patients and worked for the association's growth in services and numbers. In addition she wrote patient-perspective articles for medical journals and spoke to both patient and medical groups in the U.S. and Europe. She retired as President of the Board of Directors of the association in 1992 and now serves at President Emeritus. Ginny continues to be a resource to ANA.
Since the founding of ANA in 1981, thousands of patients, family members, friends and health care professionals have received comprehensive and non-technical information about acoustic neuroma. Pre- and post-treatment information is provided in our quarterly newsletters, patient information booklets, our website, webinars, and support groups.
ANA membership benefits include receipt of a quarterly newsletter, patient information booklets, access to a network of support groups, participation in our webinars by leading medical professionals, access to a list of acoustic neuroma patients willing to talk about their experience throughout the country and our website Member Section. Our exclusive website Member Section includes all of our patient information booklets, newsletters and webinars. ANA also maintains an interactive website at www.ANAUSA.org with an ANA Discussion Forum.
ANA is patient-founded, patient-focused and patient-funded.
Each heading slides to reveal information.
Questions to Ask Yourself
How do my priorities impact decision-making?
All treatments have benefits and consequences. You must make a choice that reflects your individual situation. Your work life, family life, or hobbies can influence what your priorities are for treatment. Your doctor will also consider your priorities from a medical aspect. One treatment does not fit all situations, and it is a matter of making the most appropriate match--one that you believe in.
Talk to your doctor about your expectations. For example, is hearing preservation possible? Consider whether your current hearing level is conducive for a hearing preservation treatment approach. Some patients may prioritize facial function or other factors, based on profession or lifestyle. You must be comfortable asking your doctors questions about how your priorities will be taken into consideration when choosing a treatment.
What are my expectations for post-treatment?
It is important to have reasonable expectations about acoustic neuroma side effects and your recovery after surgery or radiation treatment. It is important to ask questions about the procedure, immediate aftercare, and any longer-term care. Your doctor can explain what specialists are available for any post-treatment side effects, such as vestibular therapy, and whether he or she will coordinate any aftercare treatment with your home town physician (if you travel for treatment).
Managing your expectations about returning to work, or resuming other activities post-treatment is beneficial to your recovery. These are important subjects to broach with your doctors as well.
What is the best treatment option for me?
Sometimes, choosing a particular treatment is not a clear-cut choice, and it can be very difficult to make a decision. Depending on the size and location of your tumor, your hearing, age, general health and other factors, not all treatment options may be recommended. It is important to get more than one opinion about treatment, if possible. ANA provides downloadable lists of questions about surgery and radiation to bring to your doctor visit when you are considering treatment options.
Do I want tumor removal or growth arrested?
If removal is important to you, surgery is the only route, and you must then decide which surgical approach suits your situation best. On the other hand, radiation does not entail an invasive procedure, and if arresting the tumor's growth would be satisfactory, radiation may be an option. It is also important to ask your doctors about the potential for regrowth of the tumor with any given treatment, and what the follow-up treatment would be in that situation.
How important is long-term outcome data in my decision-making?
Many patients are more comfortable analyzing information about treatments and outcomes before making a decision. Surgery is the oldest treatment option for acoustic neuroma and therefore has the most data associated with it.
In the 1950s, to professors in Sweden began to investigate combining radiation beams with stereotactic (guiding) devices capable of pinpointing targets within the brain. However, this technology was not used in the United States until The Center for Image-Guided Neurosurgery at the University of Pittsburgh Medical Center installed the first North American Gamma Knife in 1987. Gamma Knife radiation is always delivered in a single dose.
In 1982, the Linear Accelerator (LINAC) technology was developed using X-rays instead of gamma rays. This system allowed for Fractionated Stereotactic Radiotherapy (FSR) delivering lower dose radiation over multiple visits rather than a single higher dose.
The CyberKnife technology was developed in 1987 using a robotic arm and a compact linear accelerator. It was developed at Stanford University Medical Center and the first patient was treated in 1994, however, this was not an FDA approved treatment option until 2001.
It is important to remember that even within each of these options, the protocols are constantly being refined in an attempt to improve patient outcomes.
If I choose observation, when might I seek treatment?
If a patient chooses the observation/watch and wait option (generally reserved for smaller tumors), periodic imaging is required. Following initial diagnosis, a reasonable plan would be to get a new MRI scan in six months. If there is no growth, the next scan can be done one year later and then on an annual basis. If there are any new symptoms, your physician should be notified immediately. These changes could indicate that the tumor is growing more rapidly. By waiting, there is a risk you could lose part or all of your hearing in the involved ear. There are two significant potential pitfalls with observation. First, it is critical that patients are absolutely prepared to insure that they will follow-through with MRIs as planned. Second, it is necessary to review all MRIs over time, rather than comparing any new MRI only to the immediately preceding one. Tumors may grow slowly enough so that no significant change can be seen over the course of one 6 or 12 month period even though there is significant growth over years. If significant growth does occur during the observation period, active treatment is indicated and you and your physician may decide to choose between one of two therapies: radiation treatment or microsurgical resection.
Will my insurance cover treatment?
Check your insurance policy and make necessary phone calls to determine if the facility/physician is in or out of the network. Find out what the difference in individual responsibility (i.e., 10% or 20%) will be, depending on whether the facility is in or out of the network. According to your policy, what is the maximum out-of-pocket deductible that would be your responsibility during a calendar year? Find out what is considered reasonable and customary charges. Some centers will assist you with insurance coverage issues.
Questions to Ask your Doctor
QUESTIONS FOR THE RADIATION TREATING MEDICAL PROFESSIONALS
If you have opted for radiation treatment of your tumor, you may want to ask some of the following questions of your radiation therapist, neurosurgeon, or neurotologist. Be sure that you are comfortable with the responses:
- How long have you been performing radiation treatment of acoustic neuromas? Have any problems emerged in any of your patients?
- Have you been certified to do radiation for patients with acoustic neuromas?
- Will this be a one-dose procedure - radiosurgery, or will it consist of several smaller doses - radiotherapy?
- What type of radiation treatment (e.g., Gamma Knife, LINAC, CyberKnife, Novalis FSR, proton beam, etc.) do you most commonly perform? What are the advantages of this type of radiation over the others that are available?
- Why do you recommend this particular form of radiation treatment over others?
- Do you expect hearing, balance or ringing in the ear to be potentially altered by radiation treatment?
- Do you anticipate that the tumor will swell after treatment? For how long? If the tumor swells, do you expect there to be any problems? If there are any problems, how would you treat them?
- What are the long-term side effects of this treatment? Say 10 years or more? How will I know if something is changing?
- Are physicists involved in the planning of your radiation treatment?
- What symptoms are commonly experienced by your patients after treatment? How do you define “side effects”?
- What are the more serious complications such as malignancy, hydrocephalus and others that can happen with treatment and what are the relative frequencies?
- How many of your patients have experienced continued growth of their tumors following treatment? How many of your patients have you followed long-term to draw your conclusion? If this happens to me, what would be my best follow-up procedure? Can I have microsurgery, or can I repeat radiation treatment?
- After radiation treatment, may I go about my business as before treatment, or are there any special precautions I should take?
- When and how often should I schedule follow-up MRIs after treatment? Will I get these MRIs for the rest of my life?
- Why would you choose radiation for me?
QUESTIONS FOR THE ACOUSTIC NEUROMA SURGEON
If you have decided to have your acoustic neuroma surgically removed, you may wish to ask some of the following questions of your surgeons. Be sure that you are comfortable with the responses:
- How many acoustic tumors have you removed this month/this year and what specific training in acoustic tumor surgery have you had?
- What is your total experience in operative cases of acoustic neuroma tumors over what period of time?
- What microsurgical approach do you recommend for my tumor size, location, age, health and level of hearing? How comfortable are you with each of the surgical approaches?
- Do you feel that the facial nerve results or the hearing results are more important in the long-term outcome? How do you achieve their preservation and what are your success rates?
- Do you electrically monitor the facial nerve during surgery?
- In your experience, when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop?
- For a tumor the size and shape of mine, what have been your results with respect to facial nerve function, both temporary and permanent?
- What is the likelihood that my remaining hearing will be preserved after this surgery?
- Do you anticipate total tumor removal with a single operation? If not, what are my follow-up options? Surgery? Radiation?
- Will this surgery be done by a team of physicians with more than one specialty?
- What has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak and headache?
- When and how often should I schedule follow-up MRIs after treatment? Will I get these MRIs for up to 10 years?
- Does your hospital have a neurological intensive care unit?
- About how many days will I be in the hospital?
- What follow-up care will I need?
- How much discomfort should I expect from headaches and from the incision after this surgery?
- What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.
- Did you feel comfortable with the surgeon, the information shared, access to a non-biased sample of his/her previous patients?
- All other things being equal, when can the surgery be scheduled?