ANA 2013 Year in Review
ANA continues to grow and expand our programs and services. Just this past year, ANA launched several programs of vital importance to AN patients.
● Patient survey results from 2012 published, the latest in a series. Click here to view the results.
● Webinar program launched with presentations by leading acoustic neuroma
● Social Media presence with a significant increase of Likes on Facebook.
● Acoustic Neuroma Legacy Society for planned giving opportunities was initiated.
● AN Awareness Week launched in May.
Information About ANA on the Internet
The mission of the Acoustic Neuroma Association is to inform, educate and provide national and local support networks for those affected by acoustic neuromas. Our national organization is committed to being the most trusted source of accurate medical information about acoustic neuromas. All of the medical information published by ANA, either on our website, within social media or in print has been approved by our Medical Advisory Board.
ANA advises that users be wary of information found on the internet, as it does not always come from a trusted source and can communicate incorrect information. Your personal research is key in determining risk factors, symptoms, treatment options, side effects and post-operative treatment effects of an acoustic neuroma. Please utilize the resources provided by ANA or other respected sources to double check information found on the internet to determine its value.
Local Support Group Overview
Local support groups are a vital extension of the support network that ANA members can provide for one another. The local support groups provide an opportunity for networking and are able to assist in social and personal support for all acoustic neuroma patients including newly diagnosed, watch and wait and previously treated acoustic neuroma patients, their family members and any interested persons in the local area. Click on our Local Support Group link for more information.
Willing to Talk (WTT) Program
If we don't have a local support group in your area or you want to network with others, a very valuable resource is our Willing to Talk list - a list of ANA members who have had an acoustic neuroma, gone through treatment and recovery, and are now willing to have their contact information shared as a source of information and support. Networking with AN survivors on this list can be very beneficial and is a benefit of ANA membership. Click on the Membership link to become a member.
Acoustic neuroma patients often times have the need for a caregiver - either in the short-term, mid-term or long-term. Caregivers include spouses, parents, children, friends and siblings who are connected to the acoustic neuroma patient. Contact the ANA office for a Caregivers Information Sheet and click on our Caregivers link for more information.
Medical Resources Listings
ANA strongly urges patients, families, or anyone seeking information or treatment for an acoustic neuroma to consider consultation with physicians who have had substantial experience in treating this condition.
The physicians or organizations listed have self-reported data to meet criteria established by the ANA for having substantial experience in treating acoustic neuromas. The physicians have paid an administrative fee to be listed. These listings should NOT in any way be construed as an endorsement, referral or recommendation by the ANA. The ANA does NOT make any independent determinations concerning the qualifications of any listed physician or organization. It is every individual's responsibility to verify the qualifications, education and experience of any healthcare professional.
ANA advises that all treatment choices, including "watch and wait" have consequences. ANA recommends those patients, families, or anyone seeking treatment to carefully weigh treatment options and make a well-informed decision after careful consideration of risks, consequences, complications, and potential outcomes.
Click here to view the Medical Resources Information.
Website Member Section
There is a special ANA Member Section. In this section you will find the following:
ANA Newsletter, Notes – quarterly issues - 2006 to current
ANA patient information booklets
AN Articles – published medical journal articles related to acoustic neuroma
Webinars presented by leading acoustic neuroma medical professionals
Symposium 2013 Audio Recordings for workshops and general sessions
Symposiums 2009, 2011 and 2013 PowerPoint presentations for some workshops and general sessions
ANA 2012 Patient Survey
In a continuing effort to advance our understanding of the acoustic neuroma condition, Acoustic Neuroma Association conducted a survey of acoustic neuroma patients in 2012. The results can be accessed by clicking here Patient Survey. Thank you to all who participated in our 2012 Patient Survey.
Cell Phones and Acoustic Neuroma
Note: In recent press reports that link cell phones to cancer, there have been references to acoustic neuromas being in the risk category. Acoustic neuroma is NOT a cancerous brain tumor – it is a benign, non-malignant brain tumor, which is NOT a form of cancer.
CINCINNATI, June 2, 2011 – John M. Tew, MD, a neurosurgeon with the Mayfield Clinic and Co-Chair of the Acoustic Neuroma Association’s Medical Advisory Board, re-iterated his position that cell phone users should avoid placing the phones next to their head during conversation. Dr. Tew re-stated the position following the release of a statement by the International Agency for Research on Cancer (IARC), an arm of the World Health Organization, describing cell phone use as a possible cancer risk.
The IARC placed the use of cell phones in the same category for cancer risk as lead, engine exhaust and chloroform. A team of 31 scientists from 14 countries, including the United States, evaluated exposure data, studies of cancer in humans, studies of cancer in experimental animals, and mechanistic and other relevant data to reach their conclusion. They concluded that the evidence for glioma (a malignant brain tumor) and acoustic neuroma (a benign brain tumor) was limited among cell phone users and was inadequate to draw conclusions for other types of cancers.
“We have always said that cell phone users should avoid placing the phone to their ear,” said Dr. Tew, who is also Clinical Director of the University of Cincinnati Neuroscience Institute. “A wireless or remote receiver or a speaker setting should be used for frequent or extended conversations.”
Dr. Tew said the issue of children’s exposure to non-ionizing radiation from cell phones is especially important, and that researchers and practitioners at the Mayfield Clinic and UC Brain Tumor Center are following the issue closely and with concern. Children’s brains absorb more radiofrequency energy from cell phones because their skulls are thinner. (The skull of a 10-year-old is a few millimeters thick; an adult’s is at least twice the thickness, up to 15 millimeters thick.)
“We’re not ready yet to say that cell phones cause cancer, because it has not been proven,” Dr. Tew said. “At the same time, when you don’t know whether something is safe or unsafe, you take the proper precautions, and the proper precautions are to keep the phone away from your head.”
Concern over possible risks from low-level radiation emitted by cell phones, which are used by 4.6 billion people around the world, has grown in recent years with the publication of 30 epidemiological studies. In 2010 a large international study showed that individuals who were in the highest category of heavy cell phone use (reported average: 30 minutes per day over a 10-year period), showed a 40 percent increased risk for glioma.
In 2010 the Acoustic Neuroma Association Board of Directors published a “cautionary alert” regarding cell phone usage and acoustic neuroma. The statement was endorsed by the ANA Medical Advisory Board.
In response to the WHO’s statement, Dr. Tew made the following recommendations:
- Avoid use of cell phones while driving and cycling because the risk is comparable to the risk of driving under the influence of alcohol.
- Keep cell phones away from your head; a safe distance is at least five inches away from the skull. Use an air-tube headset if possible.
- Limit the use of cell phone whenever possible, particularly in children to reduce exposure to the developing brain.
There has been much interest and controversy in the past decade regarding the possible role of mobile phones as a cause of brain tumors. The use of cell phones has become ubiquitous around the world and if they played a causative role in a disease process, even such as causing a benign tumor like an acoustic neuroma (AN), it would have tremendous public health implications. According to the International Telecommunication Union, by 2006, 91 persons out of 100 were cell phone subscribers in developed countries. As many as 32 persons per 100 were subscribers in the developing world.
There have been 25 epidemiologic studies published between 1999 and 2008 trying to examine the role of mobile phones in the etiology of brain tumors, including ANs. Most notably, a large study from Sweden by Hardell and colleagues, and a multi-institutional study involving 16 centers in 13 countries called INTERPHONE, have admirably tried to answer this important question.
Overall, the best interpretation of the results of these studies does not demonstrate support for an increased risk of developing an AN in frequent cell phone users.
However, the science is very suggestive that the most malignant brain cancer (glioblastoma) and a benign brain tumor of the auditory nerve (acoustic neuroma) increased in cell phone users after 10 years of use, and the effect is more pronounced in children’s brains. But the science is not absolutely positive, and research in this area is continuing.
The World Health Organization (WHO) announced that long-term use of cell phones may be linked to elevated risk of some types of brain issues. The conclusion, which is reportedly still inconclusive, is derived from a landmark international study overseen by the WHO that has lasted for decades.
The results, though not entirely conclusive, clearly have concerned the WHO. Its head, Dr. Elizabeth Cardis, is quoted as saying “In the absence of definitive results and in the light of a number of studies which, though limited, suggest a possible effect of radio-frequency radiation, precautions are important.” There is particular concern regarding use by children, as their thinner skulls are less likely to shield the brain from harmful frequencies.
The Food and Drug Administration says the research “does not allow us to conclude that mobile phones are absolutely safe, or that they are unsafe.” Those who cannot avoid using cell phones may consider the advice offered by the Environmental Working Group to minimize their exposure to radiation.
- Use a low-level radiation cell phone. Check out www.ewg.org for the best 10 cell phones that emit low-level radiation.
- Use a headset or speaker.
- Listen more and talk less. Cell phones emit radiation when you talk or text, but not when you are receiving signals or messages.
- Hold your cell phone away from your body.
- Text more and talk less.
- Stop trying to communicate when the signal is poor. Poor signals mean your cell phone needs to send stronger signals (higher level radiation) to the tower.
- Don’t allow your children to use or play with your cell phones. Children’s brains absorb twice as much radiation as adults.
- Don’t use the “radiation shield.” Radiation shields such an antenna caps or keypad covers reduce the connection quality and force the machine to emit higher radiation to deliver a stronger signal.
ANA Patient Information Booklets
Diagnosis Acoustic Neuroma - What Next? - Updated February 2014
Acoustic Neuroma Basic Overview - Updated November 2013
Headache Associated with Acoustic Neuroma Treatment - Updated November 2013
Improving Balance Associated with Acoustic Neuroma - Updated September 2013
Facial Nerve and ANA - Possible Damage and Rehabilitation - Updated July 2013
A Glimpse of the Brain - Updated April 2013
Hearing Loss - Rehabilitation for Acoustic Neuroma Patients - Updated January 2013
Eye Care After AN Surgery - Updated August 2012