Symposium Shines Bright Light on Acoustic Neuroma

From left: Event Co-Host John M. Tew, MD, ANA Founder Ginny Fickel Ehr, ANA Executive Director Judy Vitucci and ANA Board President Amy Pack. Photo by Martha Headworth / Mayfield Clinic

Near the conclusion of the Acoustic Neuroma Association’s 20th National Symposium, Katherine Robinson, a banker, author and inspirational speaker, gave her presentation, “Toasting the Bright Spot.” She spoke of the original bright spot: the acoustic neuroma that appeared as a luminous white marble on her MRI nearly three years ago. And she spoke of the bright spots that followed: the kindness of doctors and friends, the new opportunities that followed her recovery, and her emerging role as a bright spot for others.

It was a fitting summation of the symposium, which drew support group leaders from 26 states to the Cincinnati Hilton Netherland Plaza, July 17-19. The retreat-like weekend was itself a bright spot for patients as well as the UC Brain Tumor Center team, which hosted the event with the Mayfield Clinic and UC Health. Over the course of two and a half days, during lectures, small workshops and one-on-one consultations, clinicians and patients taught, listened and shared. No question went unanswered and no individual tale of loss went unheard.

“This remarkable event will not be soon forgotten,” said John M. Tew, Jr., MD, Clinical Director of UCNI, an event co-host and Co-Chairman of the ANA’s Medical Advisory Board. “I have been deeply moved by the strength of individuals affected by acoustic neuroma and by their eagerness to learn more so that they can help others who are newly diagnosed. We are all enriched by their perseverance.”

“All of us – both patients and clinicians — have learned much this weekend,” said Ronald Warnick, MD, Medical Director of the UC Brain Tumor Center. He commended the physicians and staff who worked closely with the ANA to stage a complex event that featured more than 50 presentations.

An acoustic neuroma is a benign but challenging brain tumor that forms from the covering of the eighth cranial nerve, near the inner ear. It can lead to single-sided deafness, tinnitus (ringing in the ears) and balance problems. Hearing loss can occur with or without treatment, while loss of facial function can occur if the facial nerve suffers damage during surgery.

“An acoustic neuroma is a chronic disease,” Philip Theodosopoulos, MD, a neurosurgeon with the Mayfield Clinic and UC Gardner Neuroscience Institute, told the audience one afternoon. “You will have it, or its effects, for the rest of your life.”

UC Brain Tumor Center experts were joined by clinician-researchers from other prestigious institutions, including Harvard University, the Mayo Clinic, the University of Pittsburgh, the University of Southern California, and Yale University.

The 12 UCNI clinicians who donated their time were John Breneman, MD, Dale Greene, RN, Jessica Guarnaschelli, MD, David Hom, MD, George Jewell, PhD, Brendan Kelley, MD, Nancy McMahon, RN, Myles Pensak, MD, Ravi Samy, MD, John M. Tew, MD, Philip Theodosopoulos, MD, and Ronald Warnick, MD.

A few highlights from the symposium:

* Elizabeth Claus, MD, PhD, an epidemiologist and neurosurgeon from Yale, reported that upcoming research will involve studying DNA of people who have been diagnosed with acoustic neuroma. The studies will use saliva samples that contain cheek cells, which contain DNA. Scientists theorize that genetics could make a person more susceptible to an environmental exposure, translating into a risk for acoustic neuroma.

* Access to data involving acoustic neuroma has improved as a result of a 2002 law that established a national registry for benign tumors. Previously, physicians had to report only malignant tumors to a national registry. The registry was launched in 2004, and in 2010 data began to become available. Preliminary data show that 6 percent of all primary tumors — those that originate in the brain — are acoustic neuromas.

* Innovations in the treatment of acoustic neuroma are trending toward a multi-modal, “adjuvant” approach. For example, although acoustic neuromas are “benign,” the chemotherapeutic agent Avastin has shown promising short-term benefits in treating them. “I think in the future, there will be more promise for small-molecule and chemotherapeutic agents,” said Dr. Theodosopoulos (above left, with colleagues). “We can’t practice in that surgical island of bravado anymore. We need to consider multiple approaches to treatment: surgery, radiosurgery and chemotherapy.”

* While surgeons have long been concerned about damage to the hearing nerve during acoustic neuroma surgery, they are discovering that patients find damage to the facial nerve more debilitating. Facial nerve preservation is “an important new paradigm in treatment,” Dr. Theodosopoulos said. Partial removal – subtotal removal – of large tumors (over 3 cm) can help protect the facial nerve.

* If the facial nerve does suffer damage during surgery, Tessa Hadlock, MD, of Harvard, said much can be done to manage the paralyzed face. It is a myth, she said, that “you are at the end of the line.” Some fixes in certain horizontal “zones” of the face, such as the brow, eyelids and nose, can be accomplished in 20 to 30 minutes. Dr. Hadlock suggests considering facial restoration if there is no restoration of tone 8 to 12 months after surgery.

* David Andrews, MD, of Thomas Jefferson University, said the future of radiosurgery points to fractionation, the delivery of small doses of radiation over a period of 26 days. An upcoming study will further reduce the dose, protecting the cochlea. Whether the lower dose will still be effective in eradicating the tumor remains to be seen.

* Dr. Warnick explained that fractionated radiotherapy works because healthy cells are able to heal themselves overnight, while tumor cells are not. Day after day, irradiated DNA in tumor cells suffers a little more damage. Over 26 days of fractionated radiotherapy, the tumor cells are all killed off.

* Michael Link, MD, of the Mayo Clinic, said that two 2005 studies, one by neurosurgeons and one by otolaryngologists, showed that mean growth of an acoustic neuroma is less than 2 millimeters a year. Watch & scan, also known as “watch and wait,” is a good option for many patients, he said.

* Rick Friedman, MD, PhD, of the House Ear Clinic in Los Angeles, said that “watchful waiting,” though painless, does present a risk for hearing loss.

* Nancy McMahon, RN, (above right, with Dale Greene, RN) of the Mayfield Clinic, reminded caregivers to trust their instincts about what is best for loved ones. She also said that because caregiving is a job, caregivers should reward themselves with breaks.

Officials of the Acoustic Neuroma Association announced that the 2013 symposium will be hosted by the House Ear Clinic in Los Angeles.

— Cindy Starr

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