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Notes Celebrating our 25th Anniversary 1981–2006 INSIDE NSIDE I From the Board Join Usholds at the ANA Future Symposium 2 more promise for AN patients 2 National Symposium Philadelphia 3 Mailbag 3 Local Group Spotlight Eastern NC 4 Local Group Spotlight Mailbag 4 Local Support Group Recap 5 Voyages Structural Damage 6 ANA Contributors • Kansas City, KS 410 Membership/ Donation Form 12 “ANA recommends treatment from a medical team with substantial acoustic neuroma experience.” This statement was adopted by the Acoustic Neuroma Association Board of Directors in October 2001 and demonstrates its belief that treatment of acoustic neuroma by a medical team with extensive experience is critical to your best chance for a successful outcome. Criteria to be used in the selection of medical professionals can be found in the Medical Resources link on our website at www.ANAUSA.org. Issue101, March 2007 M EDICAL R EPORT Headache Associated with Acoustic Neuroma Treatment BY JOHN RYZENMAN, M.D. 0% to 73% depending on the type of surgical approach, technique used, Advances in the management of and reporting interval since surgery. acoustic neuroma have reduced both Frequent and severe POHs have been the associated surgical mortality and more often associated with the submorbidities (e.g., facial nerve paralysis, occipital or retrosigmoid approaches cerebrospinal fluid leak, meningitis). than the translabyrinthine or middle Head pain is expected in most patients fossa approaches. immediately after acoustic neuroma Pre-operative headaches attributed surgery (acute phase) because of the to the acoustic neuroma alone are relaincision, variations in cerebrospinal tively uncommon. Headache sufferers fluid pressure, muscle pain, or even of other causes (migraine, tension meningitic pain. It typically responds headache and even fibromyalgia) rarely to appropriate medications and rehave significant exacerbations due to solves within several weeks. surgical removal of the tumor. In paHeadache that persists for months tients who experience chronic POH, or even years after surgery (chronic the pain often persists for prolonged phase), can be debilitating and may be periods of time, and does not always an under-appreciated complication. respond well to various medical and The International Headache Society surgical treatments. Publications in the recently added a classification of post past decade including ANA surveys in craniotomy headache not related to 1989, 1998 and subsequent analyses trauma. This definition clarifies both have increased treating physicians’ to patients and physicians the nature awareness of the impact of headaches of the post-surgical pain. The exact on recovery from acoustic neuroma prevalence and causes of chronic treatment; improved their ability to acpostoperative headache (POH) are curately counsel patients preoperativeelusive. After surgical treatment of ly; and as a result, several preventative acoustic neuroma, the reported inci- therapies have been proposed. See Headache, page 8 dence of headache has ranged from ANA 18th National Symposium July 13-15, 2007 John M. Ryzenman, M.D., is Director at the Ohio Ear Institute, LLC in Columbus, OH. He is a graduate of the University of Cincinnati, OH, and completed his residency with the Department of Otolaryngology Head and Neck Surgery in Cincinnati. He completed his fellowship in Neurotology at Northwestern University, Chicago, IL. Dr. Ryzenman is the recipient of the Paul Holinger Resident Research Award in 2003. Register Now Sponsored by The Department of Neurosurgery, Thomas Jefferson University, Jefferson Medical College in Philadelphia See December Notes or visit ANA online for all details, program, and registration form. New – Early Discount Registration by May 1, 2007 F ROM T HE B OARD Join Us at ANA Symposium ANA MISSION: The mission of ANA 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. We cannot recommend doctors, medical centers or specific medical procedures and always suggest that one consult with a physician before making any medical decisions. Your comments, ideas, suggestions and financial support are needed and welcome. Published in Cumming, GA four times a year (March, June, September, December) by the Acoustic Neuroma Association. Acoustic Neuroma Association 600 Peachtree Parkway, Suite #108, Cumming, GA 30041 Phone 770-205-8211 Fax 770-205-0239 Toll-Free Phone 877-200-8211 Toll-Free Fax 877-202-0239 Web www.ANAUSA.org E-mail [email protected] EXECUTIVE DIRECTOR Judy B. Vitucci EXECUTIVE BOARD President Agnes Garino, Kirkwood, MO Vice President Barbara Hyatt, MSW, Denver, CO AGNES GARINO President, ANA Kirkwood, MO In just a few months, AN patients, family members and medical professionals will meet in Philadelphia for ANA’s 18th symposium. From July 13–15, as the symposium theme expresses, we will be “Visiting the Past and Discovering the Future” for AN patients. My first symposium was in the summer of 1997 in Dallas. One can only hope that Philly will not be as hot as it was in Dallas that summer. Mid-summer 1997 was just 18 months after my surgery to remove a 11⁄2 centimeter AN. While the surgery had gone well, no facial or balance problems, I had been experiencing almost daily headaches, some quite severe. I saw attending the symposium as a way for me to learn more about dealing with headaches and about this medical “problem” that I, like I’m sure many of you, had never heard of until diagnosed. This symposium like all the subsequent ones I’ve attended reinforced the value of these biennial opportunities to learn, network, and experience the camaraderie of meet- ing other patients. I encourage you to review the symposium program in the December 2006 issues of Notes or online at www.ANAUSA.org. The meeting offers a myriad of ways to help and inform AN patients. We encourage Agnes Garino, you and your family to join ANA Board us in Philadelphia as we cel- President ebrate our 25th anniversary of serving you and other AN patients, with special thanks to our founder Ginny Fickel Ehr. In recognition of this special event, we invite you our members to consider a special financial gift to ANA. You may designate a person to honor or be designated in celebration of our 25th anniversary or sponsor a workshop at the symposium. If you would like more information on our special anniversary gift program, please contact our executive director, Judy Vitucci, 1-877-200-8211, or via email at [email protected]. Look forward to meeting many of you in Philadelphia in July. Treasurer Nancy Busey, Mobile, AL Secretary Steve Houghton, Nokomis, FL Botox® Use for Facial Issues MEMBERS AT LARGE Botox (Botulinum Toxin) has received a great deal of media attention as a cosmetic procedure for reducing wrinkles. It is also being used increasingly in cases of facial paralysis with synkinesis, to improve facial coordination. Botox blocks the electrical signal generated by the facial nerve from entering the muscle. That portion of the muscle injected becomes paralyzed and cannot move. This is a temporary effect lasting 3–6 months. Christine Bakalar Highland Park, IL Frederick S. Buckner, M.D. Seattle, Washington Daniel Gallington, Alexandria, VA Pam Golum, Valley Village, CA David Krasne, Cleveland, OH Amy Pack, Visalia, CA Rebecca Pennington, Chula Vista, CA Gordon R. Seidenberg Great Falls, VA When injected selectively into improperly contracting muscles, Botox can be very effective. On the other hand, it can cause severe paralysis when injected in the wrong place. Botox must be administered by a qualified physician who has experience with facial paralysis and synkinesis. Editor’s Note: Botox is also being used to treat various types of headaches. See headache article beginning on page 1.) Joe Speiden, Louisville, KY Past President John Zipprich, Houston, TX PRESIDENT EMERITUS Virginia Fickel Ehr Brevard, NC © March 2007 Acoustic Neuroma Association 2 Updated ANA Patient Information Booklets n Acoustic Neuroma Basic Overview Facial Nerve and AN: Possible Damage and Rehabilitation n Headache Associated with AN Treatment Order online at www.ANAUSA.org or call ANA office at 1-877-200-8211 n ANA Notes | March 2007 National Symposium in Philadelphia Welcome to Philadelphia, where in Visiting the Past, one can Discover the Future. This year’s symposium not only brings together the latest information on pre- and post-treatment presented by the nation’s leading experts on acoustic neuroma, but is also the return to Pennsylvania to celebrate the 25th Anniversary of the Acoustic Neuroma Association. Planned for July 13–15, 2007 at The Doubletree Hotel Philadelphia, the symposium will provide opportunities to learn important AN information, to network with physicians and other AN patients and to share friendship. Location and Accommodations All symposium and social events will be held at the Doubletree Hotel Philadelphia. A block of rooms with a special room rate has been arranged at $139.00 plus tax, per night for single/double occupancy. To make your reservations call 1-800-222-TREE as soon as possible (deadline for this rate is June 8, 2007). Registration Online registration is available at our secure website www.ANAUSA.org using the Symposium Registration Form. If you prefer, registration and payment can be mailed or faxed using the registration form in the December 2006 newsletter, Notes, to: ANA National Symposium 2932 Ross Clark Circle, Suite 191 Dothan, AL 36301 Fax: 334-792-0126 Please Note: New this year is our Early Discount Registration of $110. The deadline to obtain the Early Discount Registration is Tuesday, May 1, 2007. Symposium Events Friday, July 13, 2007 The symposium is kicked off with the Opening Welcome General Session. This is following by a General Session specifically for Newly Diagnosed / Pre-treatment Patients — Discussing Your Options. For Treated Patients there will be two workshop sessions addressing your needs. In the late afternoon an optional tour of the facilities at the Thomas Jefferson University Hospital is being offered. There is also the opportunity to sign up for an individual 15-minute March 2007 | ANA Notes physician consultation session. On Friday evening, join us for Evening Gatherings with a light meal and join one of the roundtable discussions with topics such as: Caring and Sharing, Newly Diagnosed Decision Making, Networking for Young AN Patients and For Family Members Only. Saturday, July 14, 2007 The symposium continues with a full day of valuable information, including an extensive general session with leading AN presenters. Highlights of the afternoon include the Founders Address, featuring Ginny Fickel Ehr, ANA Founder, and Albert Rhoton, Jr., MD, early Medical Advisory Board Chairman. Symposium then continues with breakout workshop sessions. Join us for the evening event at the 25th Anniversary Gala Banquet. This semi-formal dress gala will include a silent auction, special anniversary awards, a visit from a local celebrity, and music and entertainment — the Scott Romig Band — whose “signature” style includes swing, jazz, Motown, R&B, soul, funk and good vintage rock n’roll. Sunday, July 15, 2007 An interdenominational Worship Service will be offered in the morning. This will be followed with additional workshops, individual sessions and concluded with the General Session Brunch. The inspirational speaker is Allie Bowling, author of Dancing through Life with Guts, Grace & Gusto: Fancy Footwork for the Woman’s Sole. Allie is a professional speaker, humorist and author and holds a B.A. in Business Administration and a Ph.D. from the school of hard knocks. In 2004 she underwent brain surgery to remove an acoustic neuroma. She is a brain tumor survivor and thriver. Join Allie Bowling Taking a Trip Down the Humor Highway of Life as she takes you through the twists, turns and transitions highlighting the everyday choices you are given. Please refer to the entire 18th National Symposium program and registration form at www.ANAUSA.org or the December issue of our newsletter, Notes. For more meeting information, please contact Maureen Frazier, Envisioned Meeting and Events, at 334-792-0126 or e-mail: [email protected]. MEDICAL ADVISORY BOARD Co-Chairmen John M. Tew, Jr., M.D. Cincinnati, OH Richard Wiet, M.D. Chicago, IL David W. Andrews, M.D. Philadelphia, PA Patrick J. Antonelli, M.D. Gainesville, FL Derald E. Brackmann, M.D. Los Angeles, CA H. Jacqueline Diels, OT McFarland, WI Rick Friedman, M.D., PhD. Los Angeles, CA William A. Friedman, M.D. Gainesville, FL Douglas Kondziolka, M.D. Pittsburgh, PA Jed Kwartler, M.D. Springfield, NJ Robert Levine, M.D. Los Angeles, CA Myles Pensak, M.D. Cincinnati, OH Nancy Ratner, PhD. Cincinnati, OH Harry van Loveren, M.D. Tampa, FL Chairmen Emeriti Robert G. Ojemann, M.D. Boston, MA Albert L. Rhoton, Jr., M.D. Gainesville, FL ANA INTERNATIONAL CONTACTS Australia New South Wales Pat Purcell 6 Cambridge Ave. Narraweena, NSW 2099 Queensland P.O. Box 254 Stones Corner Queensland 4120 www.qana.asn.au Victoria Acoustic Neuroma Association of Australasia c/o Better Hearing Australia 5 High St. Prahran, Victoria 3181 [email protected] www.anaa.org.au Canada P.O. Box 369 Edmonton, Alberta T5J 2J6 [email protected] www.anac.ca Denmark Claus Joergensen Aasletten 16, 3500 Vaerloese www.acusticusneurinom.dk Germany Prof. Erich Schulz-Du Bois Brunneweg 3B 24211 Preetz www.akustikus.de Great Britain British Acoustic Neuroma Association Oak House, Ransom Wood Park. Southwell Rd. W., Mansfield Notts NG21 OHJ www.bana-uk.com New Zealand Heather Deadman P.O. Box 222 Taumarunui acousticneuromaassnofnewzealand@ xtra.co.nz 3 LOCAL G ROUP S POTLIGHT: Eastern NC Facing the Challenges Together BY STEVE COLEMAN AND KARLA JACOBUS Group Co-Facilitators We all would like to choose our challenges — but that’s not what life is all about, as the members of the Eastern North Carolina Acoustic Neuroma Support Group can testify. We can, however, choose how we cope with life’s challenges, and how we challenge ourselves. Our support group, formed in January 2005, meets four times a year in the central part of North Carolina, and has served acoustic neuroma patients and family members from the coast to the mountains as well from across the border into South Carolina. Members range from “oldtimers” diagnosed and treated twenty-odd years ago to newly-diagnosed “youngsters” (These terms have nothing to do with age, although our ages have ranged from 14 to 70+). In our meetings, we have explored treatment options, both locally and around the country; discussed experiences with treatment including surgery, gamma knife, and “watching and waiting”; and shared approaches to dealing with common post-surgical issues — balance problems, hearing loss, facial paralysis, headaches, and tinnitus, among others. A primary function has been to provide information and support to newly diagnosed patients and their families as they research and make decisions about treatment. The national ANA organization has assisted us with information, and both ANA and local medical centers have referred patients to our group. Personal Experiences Important Sharing information is only part of our group’s mission. Possibly more important is the sharing of personal experiences with the shock of diagnosis, the difficulty of making treatment decisions, and the problems of post-surgical is- sues. We’ve talked about the hospital experience (don’t ever go to a hospital without a family member, friend, or body guard!), post-surgical discomfort (I bit my tongue, and I can’t talk or eat!), and the everlasting ringing in the ears (how can you describe this?). We’ve even found humor and laughter, vital tools for facing treatment and recovery. Members of the support group “get it” — they understand the feelings of fear, frustration, and being overwhelmed at times — as doctors, nurses, friends, and even family members cannot. Members give extra support and encouragement through emails between regular meeting times. Most of all, our members are a testament to positive approaches to life’s challenges. When approaching surgery or other treatment, many members have visualized their goals for recovery. These goals are as individual as the members, ranging from parenting active children, to shopping, traveling, and visiting friends independently, to returning to a challenging job, to athletic pursuits like snow skiing, soccer refereeing, distance running, making your freshman tennis team, and running in a state-wide judicial campaign. One member even wanted to be able to get back on a roller coaster! We know that it may take time, and adjustments may have to be made, but we are living fulfilling lives after treatment. Passing the Cane Our group’s concrete symbol has been a cane, first used for post-surgical balance problems by one member, then passed from member to member as each person prepared for surgery. Some members have needed and used the cane, others have not; but all of us have benefited from finding and giving support in the group and from challenging each other. M AILBAG E-mail addresses, if available, are included. You can also contact the writers of these letters by telephone or mail through the ANA office. Support Group Provides Assurance I went to the support group meeting in Washington, DC, on Oct.14th. I would like to thank all those who organized this event. This is my first meeting, and it was GREAT!!!! I went away feeling very confident and selfassured, knowing that my life is what it is — or it is what I do with it. An acoustic neuroma can be a bump in the road of life. I still suffer from facial paralysis and throat paralysis along with numbness of the tongue, deafness in my left ear, and excessive dryness in my left eye. BUT I really have come a long way. Talking with people at the meeting gave me comfort about my future, and I realized that I need to be patient with myself. Debra Hoar Damascus, MD [email protected] Thorough Research Is Critical I read about a radiosurgery experience in the Mailbag column of the June 2006 issue of Notes and it made me want to share my own experience, which was quite different. I am a 62-year-old male, in excellent general health. About a year before my Continued on next page Support group members help each other meet life’s challenges. 4 ANA Notes | March 2007 M AILBAG Continued from previous page radiosurgery treatment, I retired from my career as an airline pilot. Had my experience taken place before retirement, my career would have been forced to an early end. I was initially diagnosed in October 1999 with a left side acoustic neuroma approximately 6 mm diameter. At that time it was causing only a faint tinnitus, and my ENTs — two of them — Continued on next page Why Should I Join a Support Group? The Local Support Groups provide networking opportunities for newly diagnosed and post-treatment AN patients, family members and interested persons in the local area. Among the Benefits ■ Educating and informing AN patients about the latest AN topics of interest. ■ Nurturing those connected by a common experience. ■ Disseminating information on dealing with specific problems, overcoming handicaps and reassuring that better times lie ahead. ■ Helping the patient to develop more realistic expectations regarding their situation. ■ Providing emotional support. ■ Assisting patients to cope with pre- and posttreatment. ■ Reducing isolation and loneliness. ■ Listening in a nonjudgmental manner. For more information, call the ANA office at 1-877-200-8211. March 2007 | ANA Notes LOCAL S UPPORT G ROUP R ECAP Editor’s Note: ANA publishes annually reported support group meetings that have taken place over the past year (January 1, 2006 to December 31, 2006). Reported attendance numbers are in parentheses following meeting date and topic. Join now if you are not currently active in a support group. Contact the leader nearest you listed below so that you may benefit from this program. For a complete support group list including newly formed groups, go to our website at www.ANAUSA.org. Participating in a support group will help you have contact with other ANA members who have gone through a similar experience. Group interaction is very successful and can be extremely beneficial! ALABAMA Mobile Joana Busey, 251-666-2789, [email protected] Reba Cuevas Ladner, 228-669-9238, [email protected] 4/29/06 Caring & Sharing (9) ARIZONA Phoenix Melody A. Welsh, 480-496-0832, [email protected] Doug Brown, 480-991-2097, [email protected] 11/7/06 Tinnitus by Dr. Michael Robb (16) ARIZONA Tucson Carol Franklin, 520-722-8340, [email protected] Nora Encinas, 520-572-7802, [email protected] 4/9/06 Caring & Sharing (7) 10/16/06 Post Surgical Expectations and Complications by Dr. Peter Weissdopf (13) CALIFORNIA Long Beach Carol Mayhew – 2006 Leader (Currently recruiting for replacement leader) 3/18/06 Digital Wireless CROS/BiCROS Hearing System (20) 10/28/06 Caring & Sharing (14) CALIFORNIA Sacramento Charles Bormann – 2006 (Partial) Leader Hazel Berman – Current Leader, 916983-9313, [email protected] 1/14/06 BAHA Hearing Device (22) 5/13/06 Open Discussion and Selection of New Group Facilitator (4) 9/16/06 Planning & Discussion (12) ILLINOIS North Dave Skaja, 847-367-0534, [email protected] 4/20/06 Rehab Options for SSD by Auditory-Verbal Therapist, Leslie Schumaker, MS (5) 8/19/06 Neuromuscular Retraining for Facial Paralysis by H. Jacqueline Diels, OT (12) CALIFORNIA San Diego Kathryn Harris, 619-281-5371, [email protected] 8/12/06 Meet & Greet (12) ILLINOIS West Chicago Susan Byrne, 630-871-0725, [email protected] 3/26/06 Dealing with Tinnitus and Info on Hearing Aids by Mark Christian, Clinical Audiologist – Lead by Larry & Becky Narjes (41) 10/8/06 Social Meeting - Lead by Larry & Becky Narjes (15) CONNECTICUT Hartford Ann Andrews, 860-666-6782, [email protected] Susan Clark, 860-472-7221, [email protected] 4/27/06 Caring & Sharing (5) 10/26/06 Tinnitus by Lynn Firestone, AcD., CCC-A, FAAA (11) DC Washington Greg Schlosberg, 703-313-9633, [email protected] 1/21/06 Vestibular Issues (20) 6/10/06 Caring & Sharing (15) 10/14/06 “Sherry’s Story: Balance and Hearing in Jeopardy” video presentation (15) FLORIDA Ft. Lauderdale Neil Frank, 954-473-8545, [email protected] 4/30/06 Gamma Knife Radiosurgery Treatment by Dr. Jacques J. Marcos (20) 11/12/06 Headache Management for the AN Patient by Dr. Priscilla Potter (11) FLORIDA North Lois Seay, 904-268-1266, [email protected] Joan Vanderbilt, 904-287-8132, [email protected] 1/21/06 Caring & Sharing and Symposium Update (6) 4/8/06 General Discussion (6) 9/9/06 General Discussion (12) 12/9/06 General Discussion (12) FLORIDA Orlando Dennis Marsico, 407-888-8082, [email protected] 4/12/06 Dealing with AN, Before & After (6) FLORIDA Sarasota Judith Rock, [email protected] 4/22/06 Coping with Tinnitus by Dr. Nick Digges (16) 11/11/06 Caring & Sharing (12) GEORGIA Atlanta Chapter Amy Nabavi, 770-751-7176, [email protected] Diane Sale, 770-786-7001, [email protected] 10/28/06 Caring & Sharing (24 ) HAWAII Jane Fowler, 808-531-3505, [email protected] Patty Mitsui, 808-625-1676, [email protected] Hannah Kawamata, 808-742-1837, [email protected] Kathleen Fukushima, 808-573-1221, [email protected] 4/1/06 Caring & Sharing (5) 7/29/06 ANA 2005 Symposium, Caring & Sharing (10) 10/28/06 Caring & Sharing (8) ILLINOIS Central Tammy Desmond, 309-662-0993, [email protected] 11/04/06 Meet & Greet INDIANA Indianapolis Kathy Mackey, 317-846-3735, [email protected] 2/23/06 Hearing Aids (6) MARYLAND Baltimore Catherine Tyson – 2006 Leader Katherine Frawley – 2006 Co-leader Elaine Ball –Current Leader, 410-5572582, [email protected] 7/22/06 The BAHA System (14) MASSACHUSETTS Springfield Christine Nuger, 413-567-7062, [email protected] 4/29/06 Meet & Greet (8) 10/28/06 Improving and Maintaining Balance Through Yoga (8) MICHIGAN West Bloomfield Gail Beale – Current Co-leader, 248681-0780, [email protected] Elaine Glasser-Silk – 2006 Co-leader Jim Notarnicola – Current Co-leader 313-274-2675, [email protected] 3/19/06 BAHA implants by Cochlear America (16) 6/25/06 Tai Chi and Balance for the AN Patient (27) 10/29/06 The Importance of Support by Family & Friends of the AN Patient (32) MISSOURI Kansas City Dave Kellogg, 913-345-1727, [email protected] 1/21/06 Assessment and Audiologic Management of Tinnitus (8) 4/15/06 The Role of Humor in Recovery presented by John Klein, Executive Coach, Nextel Corp (9) 7/15/06 Current Concepts in the Management of AN (8) MISSOURI St. Louis Dona Anderson, 618-288-9936, [email protected] Peggy Wangrow, 636-227-7673, [email protected] Schatzi Clark, 636-227-1059, [email protected] 1/14/06 Caring & Sharing (15) 4/22/06 Improving & Maintaining Your Balance presented by Natalie Pustari, MPT (15) 7/15/06 Tai Chi Information & Demonstration presented by Nancy Dollenmeyer, MPT (10) 10/14/06 Questions & Answers – Insurance Issues (12) NEW JERSEY Northeast Jonathan Bonesteel, 973-783-8723, [email protected] 4/26/06 Meet & Greet (4) NEW JERSEY Chapter Wilma Ruskin, 609-683-4650, [email protected] 4/30/06 Making Lemonade from Lemons – Rediscovering Joy and Humor (22) 10/22/06 AN Symptoms – Watch & Wait by Dr. Samuel Selesnick (37) NORTH CAROLINA Eastern Steve Coleman, 828-295-8071, [email protected] Karla Jacobus, 919-467-1556, [email protected] 1/21/06 Meet, Greet & Support and Restoring Balance through Yoga (18) 7/22/06 Meet & Greet (21) 11/4/06 Meet, Greet & Support (21) OHIO Dayton Sr. Annette Grisley, 937-643-0296, [email protected] 2/11/06 Education Meeting (4) 5/13/06 Caring & Sharing (4) 8/12/06 Summer Picnic (5) 11/11/06 Balance Issues & Rehab for the AN Patient (5) OHIO Northeast Robin Data, 330-877-8521, [email protected] 5/4/06 Temporal Bone Registry and Caring & Sharing (7) OREGON Portland Jerry Harris, 503-292-4268, [email protected] 2/27/06 Treatment Techniques for AN Tumors by Dr. Sean McMenomey, (21) 5/13/06 Caring & Sharing (13) 9/9/06 Radiation Treatment for AN in General and AN Gamma Knife by Dr. Steven Sueng (14) 11/14/06 Caring & Sharing (13) PENNSYLVANIA Reading Nancy Graffius, 610-939-9114, [email protected] 6/3/06 Tour of LINAC Dept. at Reading Hospital by Dr. Raymond Truex (13) PENNSYLVANIA Tristate Pat Ravey, 412-793-8615 [email protected] Joan Clement, 724-941-1122 9/16/06 Management of AN Utilizing Radiation Therapy by Dr. Russell Fuhrer (25) SOUTH CAROLINA Columbia Peggie Wolfrom, 843-688-5350, [email protected] Bess Moss, 803-642-5006, 4/1/06 Open Discussion (16) 10/28/06 Caring & Sharing (13) TENNESSEE Nashville Marya Elrod, 615-595-6711, [email protected] Linda Winters, 615-791-7742, [email protected] Arlene Walkington, 931-537-2490, [email protected] 12/02/06 Caring & Sharing TEXAS Dallas Pamela Denesuk, 214-706-0545, [email protected] 9/30/06 General Discussion, Dr. Brandon Isaacson, M.D., UT-Southwestern Medical Center, Dept. of Otolargnology (20) TEXAS Houston Shelly Davis Dimiceli, 713-780-1461, [email protected] 4/8/06 Caring & Sharing and the Re-organization of the Houston Group (15) WISCONSIN Green Bay Audrey Laskowski, 920-822-5635 11/4/06 Assessment & Treatment of Memory Loss and Other Cognitive Impairments Following AN by Dr. Casey Smet, Neuropsychologist (17) 5 VOYAGES M AILBAG Structural Damage BY CATHIE GANDEL Bridgehampton, NY [email protected] “It’s probably a tumor,” I say laughingly, hoping that to speak my worst fears out loud will make them false. “Yes, it probably is,” the doctor agrees. He has just finished looking at my MRI scans and shows me the pea-sized tumor which has, for some time, been my secret companion, gradually silencing my outside world. Three weeks earlier my husband and I had attended a kabuki performance at the Japanese American Cultural Center. Because the play is performed in Japanese, we rented headsets for the simultaneous translation. I could hear nothing in my right ear and blamed the headset. As I was on my way to the lobby for an exchange, my husband suggested I try the other ear. I could hear perfectly in my left ear. For the rest of the evening my mind was on my deafness, not the play. “Surgery is explained in words of one or two syllables.” Still small and benign, my acoustic neuroma had already wrapped itself around my balance nerve. Now, greedy for more space, the tumor was advancing against my hearing nerve in the first stages of a campaign that, if successful, would ultimately have it fighting my brain for space, a battle that my brain would lose. Or, as my doctor puts it, “If we don’t remove the tumor now, it will grow until it presses against your brain and you’ll die.” Surgery is explained in words of one or two syllables. “We’re going to cut a hole in your skull, move your brain out of the way and cut out the tumor,” the doctor tells me. Then he hands me a pamphlet that will answer all my questions. I put the pamphlet in my pocket, shake hands and leave. On my way out, I meet with a surgery counselor. We schedule my operation for December 18th. Sitting in my car, I pull out the pamphlet. I read that an acoustic neuroma accounts for a small percent of all brain tumors. I read that these tumors lie “deep within the skull, adjacent to vital brain centers.” I read about the 6 risks of surgery: hearing loss, taste disturbance, facial paralysis and brain complications. I turn back to the paragraph on facial paralysis. The auditory nerve, the balance nerve and the facial nerve are so close as to Cathie Gandel be almost braided together like ribbons on a maypole. It’s hard to get at one without disturbing the other. I read that facial paralysis is a common occurrence. The facial nerve can be stretched or even damaged during surgery. For the next month, in between driving carpool, volunteering at my synagogue, pitching a new job, making school lunches and family dinners, going to meetings and movies, I reread the pamphlet at least once a day. It starts to look like a map on a cross country road trip worn, smudged and creased. Daily I estimate my chances of making it through “intact,” without any facial paralysis. When I do imagine an aftermath with the worst case scenario, I tell myself it won’t matter: I am not my face. Sometimes I almost believe it. The day of my surgery finally arrives. As I am pushed down the hospital corridor, I whisper the Twenty-Third Psalm to myself. “The Lord is my Shepherd.... Even though I walk through the valley of the shadow of death.... Thou art with me....” “Even though I walk through the valley of the shadow of death.... Thou art with me....” When we reach the operating room, I slide off the gurney onto the table. There is classical music playing. The lights are bright. The air in the room is cold, but the flannel blankets that cover me are warm. I feel like a fragile piece of porcelain, carefully wrapped. I lie on my left side, offering the right to scissors and scalpel. The surgical nurse asks if I want to keep the hair she has just shaved off. Like porcelain, I Continued on page 7 Continued from previous page agreed that the best course of action was to “wait and see.” At their recommendation, I got follow-up MRIs every two years or so. In 2005, the tinnitus was becoming annoying, and the tumor had grown to about 7 mm by 10 mm by 6 mm. My ENT, a partner in a well-known ear clinic, continued to recommend against surgical treatment due to the significant risk of hearing loss and facial paralysis. On the other hand, he said treatment would become more difficult as time passed and the tumor continued to grow. I consulted a radiation oncologist, and he advised that a radiation treatment could successfully treat the acoustic neuroma, with virtually no risk of adverse side effects. He was a well-respected physician, and practiced in a highly reputed hospital, so with no further investigation, I opted to have the Gamma Knife radiosurgery. The procedure was done just before Christmas, 2005, by a team consisting of the oncologist, a neurosurgeon, a medical physicist and a neurosurgical nurse. It soon became a living nightmare. Within 24 hours after the treatment, I suddenly lost all hearing in the affected ear, the tinnitus grew substantially louder and was accompanied by a loud static noise, and the room started spinning. I couldn’t walk without assistance. I made a panic call to the oncologist. He said he had never heard of such side effects, and Continued on next page ANA Notes | March 2007 M AILBAG Continued from previous page assured me that the vertigo would be short-lived, and that my hearing would eventually return, perhaps in a month or two. It took a couple days for the vertigo to subside to the point that I could drive a car, but the hearing did not return, and the tinnitus grew even louder. A follow-up MRI, about two months after the treatment, showed no significant change in the tumor. This was as expected, as it takes a year or so for the tumor to shrink, but it did not explain the hearing loss. About four months after the Gamma Knife treatment I revisited my ENT, as I was still deaf in my left ear. To my complete surprise, he said that the side effects I was experiencing were not at all uncommon for Gamma Knife patients, although they usually take quite a bit longer to appear, and that I should expect them to be permanent. In fact, his impression was that some risks of side effects are similar for Gamma Knife and conventional surgery. His only positive suggestion was that I consider an implanted bone conduction hearing device, the BAHA described by Amy Pack in the June 2006 issue of Notes (“Learning to Turn a Deaf Ear,” page 6). Her report makes this option sound like something worth considering; in fact, I am presently pursuing that course. Today, just over a year after the Gamma Knife surgery, I remain deaf in my left ear, with loud tinnitus that Continued on next page March 2007 | ANA Notes Continued from page 6 too am painted, but only on one side and in only one color: the muddy brown of antiseptic. Five hours later I come out of the anesthesia slowly, hearing my husband’s voice. “It’s over,” he says. The last time I was in a hospital, for the birth of my younger son, I challenged God. “Okay, God, it’s your last chance to make this kid perfect.” Now I am not so arrogant. Now I silently recite the Jewish prayer for healing. “Heal me O Lord, and I shall be healed. Save me and I shall be saved.” “We got all the tumor. And you’re lucky. We saved your hearing,” my neurosurgeon boasts. “My face is paralyzed. I feel angry and cheated…” “What about my face,” I whisper to my husband. We had arranged a secret signal: one squeeze of my hand if my face was okay; two squeezes if there had been some damage to the facial nerve. But now I can’t trust these subtleties. Still drugged I can’t even feel the difference between one squeeze and two. If my hearing has been saved, then I want to hear his answer. “What about my face,” I ask again, my voice muffled and my speech slurred. “You look fine,” my husband says gently, and I know instinctively that my worst fears have been realized. My face is paralyzed. I feel angry and cheated, but I have been taught to be polite. It won’t do to make a scene. “Rise above it,” my mother always said about unpleasantness. Firmly anchored by tubes, monitors and catheters, I can’t rise above anything, especially my fear. I sob for the woman left behind in the operating room, but when I start to cry, the tears fall from only one eye. Two days later, finally disconnected from most of the tubes and catheters, I ask to go to the bathroom. The nurse is not fooled. She knows I only want to look into the mirror, to assess what I insist on calling the “damage.” I don’t recognize the woman who looks back at me. The right side of my face seems to belong to someone else. I look like I have suffered a stroke. My right eye stares dry and unblinking straight ahead. My mouth is crooked. My lips don’t meet. I’m drooling. Matted hair hangs down on only one side of my head. The other side is naked, decorated with a large questionmark shaped incision. My skull drops off like the Continental Shelf. I now resemble cracked and broken china. I return to work and the routine of life with two children, but months later I am still in mourning for the woman I used to be. I am surprised and ashamed at the extent of my vanity, how much it bothers me to have a lop-sided hair style, how much I mind that my eye doesn’t work the way it used to, that my lipstick is crooked and my face asymmetrical. I feel that my spiritual shallowness has been exposed, that I have been caught in my trivial belief that the outside is what matters. I’m selfconscious and ashamed when seeing people for the first time. Over and over, I look at photos taken before surgery and then compare with the “after” photos, trying to find some resemblance between the two women. I pull at my hair as if that will make it grow back faster. I look in the mirror and hate the face that stares back. “I, too, am still standing.” And then one night I dream that I return to our home in Los Angeles after a terrible earthquake. The house is still standing. I walk through the rooms to check for structural damage. I find cracks in the stucco walls, cracks large enough for the wind to whistle through. I go into a closet that I have been in many times, but this time there is a door in the far wall. Opening it, I find a hidden room, one that I have never seen before. It’s a beautiful room. The floor is carpeted in a warm rose. The walls are clean and white. There are upholstered chairs, paintings on the walls, tables and reading lamps, even a baby grand piano. I stop at the door in wonder. Then I enter and wander through, running my fingers over each piece of furniture. I am smiling. When I awake I am still smiling. In spite of structural damage, I, too, am still standing. Patient Update: Since 1993 middle fossa surgery for a small tumor, my tumor grew back and was larger the second time. After translab surgery in 1997 I lost my hearing. I now have a BAHA hearing device and my face has pretty much recovered. I can see a difference, but no one else can. I still don’t have tears in my right eye, and when I’m tired, my face pulls. But all in all, I think I’ve come out pretty well, and am very grateful. 7 Headache Continued from page 1 Therapeutic Options The best treatment for headaches occurring after acoustic neuroma surgery almost certainly is prevention, since these headaches have proven difficult to treat once they occur. Nevertheless, with increasing recognition of these headaches, additional treatment strategies have been reported with encouraging results. In general, if headache is not prevented, or the exact source of pain not treated at the initial onset (steroids for aseptic meningitis, etc.), there is potential for a more prolonged recovery. The majority of chronic post-operative headaches improve with time, but in the interim the perception of the pain can be altered with various techniques, however, patients’ success with any given treatment may differ. Treatments that have a clinically proven benefit over placebo are more likely to be advocated by physicians. Unfortunately, there are no well-designed studies specific to the post-craniotomy headache population. Thus physicians need to infer from studies for more common types of headache (migraine, tension, chronic daily headache) to guide their treatment strategies. Regarding complementary or Eastern Medicinederived treatments, if a patient is able to achieve notable, consistent relief from a non-invasive or minimal risk therapy, at a reasonable cost, it may be beneficial even if not clinically proven. Surgery — Revision Cranioplasty A number of reports have described secondary cranioplasty as a treatment for headaches in patients who had craniectomy at the initial surgery. In this procedure the bony opening is reexposed and covered with either acrylic (plastic) or, less often, a graft of skull bone taken from another site. The reports to date are largely anecdotal without good control comparisons, although there are numerous reports of dramatic improvement in headache in individual patients. The disadvantage of this therapy is that it requires another operation, though the procedure is not nearly as extensive as the original surgery. Medications — Acute Phase The majority of headaches occurring after acoustic neuroma surgery are treated by various medications. Because inflammation (either in the meninges or muscle) plays a large role in the origin of the pain in the first weeks to months, anti-inflammatory agents are the most 8 common forms of treatment. Corticosteroids (Prednisone, Dexamethasone) are very potent anti-inflammatory agents, and produce dramatic improvement in the headache in a large percentage of cases. However, corticosteroids have profound long-term ill effects, and should not be taken for longer than a few weeks at a time. Corticosteroids can be particularly effective when given at the early stage of onset of postsurgery acoustic neuroma headaches, i.e., within the first few weeks after surgery. Some physicians typically prescribe an initial high dose followed by a gradual taper over two weeks, at which time a transition to non-steroidal antiinflammatory agents is prescribed. Non-steroidal anti-inflammatory agents are the mainstay of therapy for headaches occurring after acoustic neuroma surgery. There are a variety of these agents available over the counter (Ibuprofen, Naprosyn), and they generally can be taken safely for prolonged periods of time. Some physicians recommend that patients take these drugs at higher doses (e.g., Ibuprofen 600mg three or four times daily) on a continuous basis, even when the headache is not severe. The treatment is continued for several weeks and then gradually stopped. A recent clinical trial substantiated the efficacy of nonsteroid anti-inflammatory agents, and also noted the potential efficacy of two additional drugs (Divalproex sodium and Verapamil) in patients who fail this treatment. The major potential side effects of non-steroid anti-inflammatory agents are upset stomach and potential stomach bleeding. Excessive doses beyond the recommended limits may be associated with kidney injury. Muscle relaxants often may serve as a helpful adjunct to treating neck muscle spasm. These drugs could be habit-forming or decrease in effectiveness over time. Medications — Chronic Phase Medications used during this phase are aimed at lessening the perception of pain while minimizing the adverse reactions. They do not necessarily treat the origin of the pain (as do steroids in the acute phase). Low dose antidepressants such as Nortriptyline and Amitriptyline have been proven to be effective additions to other treatments. If depression is present they can be taken at higher doses, however, with potential for an increase in adverse effects such as dry mouth or urinary difficulty. Anticonvulsants such as Neurontin or Valproic Acid are being used more commonly to treat chronic pain. A recent review of multiple Continued on page 9 M AILBAG Continued from previous page grows even louder with physical activity. It is difficult to hear conversation in a noisy atmosphere, such as a restaurant, sports event or shopping mall. I also have some residual amount of vertigo. If I knew then what I know now, I would not have had the treatment. What did I learn? Check it out before you start! Had I asked my ENT beforehand what he thought about Gamma Knife surgery, he would have warned me that there are significant risks. I rushed into a treatment based on the opinion of one medical professional, and I’m paying the price. Keith J. Kennedy Denver, CO [email protected] Cautiously Optimistic after CyberKnife I am now three months out from three CyberKnife treatments and although it is too soon to tell the outcome, I can say my experience was great. I feel I made the right choice for me. It’s important for me to tell you, however, that this is not easy. Some days are more difficult than others with pain and difficulty walking. On the more difficult days, I try to hold on to hope and not become discouraged. God’s grace is sufficient for me. Thanks to the ANA Discussion Forum (on the ANA website) I know these increased symptoms are normal. I do have Continued on next page ANA Notes | March 2007 M AILBAG Continued from previous page some options (steroids for one), but I choose not to try them at this point. Over this year of diagnosis, research and treatment I have been learning how to cope with the symptoms. I did a lot of research before making my choice and although my symptoms might not disappear, I chose the more conservative (didn’t want to risk open surgery) approach to stop the growth. I know that I might have to live with my current symptoms (there is hope that they will improve over time). Although it does impact my quality of life, I have been able to live my normal life with some adjustments, and I am so grateful that this is benign that I dare not complain too much. I have a co-worker who was diagnosed with a malignant brain tumor at about the same time as I started my treatment. I thank God every day!! Continued from page 8 randomized placebo controlled trials was conducted by the Cochrane Pain, Palliative and Supportive Care Group looking at the use of Neurontin to treat acute and chronic pain for conditions such as post-hepatic neuralgia, diabetic neuropathy, phantom limb pain and others (none were specific for post craniotomy pain). In this study approximately 42% reported improvement while taking Neurontin compared to only 19% on placebo. It was ineffective for acute pain. Another study by Spira et al., in 2003 in patients with chronic daily headache, found a 9% improvement in achieving headache free days with Neurontin compared to placebo. Finally, in a randomized study by Mathew et al., looking at Neurontin to treat migraine sufferers, they reported a significant reduction in migraine rates compared to placebo with the most common side effect being drowsiness and dizziness. Thus, Neurontin may be beneficial to treat headache and chronic pain, as long as the side effects are tolerable. Botox® In recent years Botulinum Toxin (Botox) injections have been used to treat various types of headaches (migraine, tension headaches, chronic daily headache, etc.). Anecdotal and “open labeled” trials reported positive responses. However, recent reviews of the literature of randomized-placebo controlled trials suggest that the placebo effect is significant, and further studies are required to determine if Botox offers any additional benefit over placebo. It should be noted that these studies were conducted in people who never had injury to their Bev Miller head and neck musculature, unlike acoustic Petaluma, CA neuroma patients. Thus localized injections [email protected] into the musculature in the region of the craniotomy may offer a true benefit for acoustic In no case does ANA neuroma patients. endorse any commercial product, physician, surgeon, medical procedure, medical institution or its staff. Although occasionally a brand name may appear in Notes, it is strictly for educational purposes. You should always consult your physician before using any over-the-counter product. March 2007 | ANA Notes Local Therapy to Neck Muscles In cases of headache resistant to medical treatment, local therapy applied to the neck muscles may be effective in many cases. This includes physical therapy with stretching and range-of-motion exercises, local heat application and massage, and biofeedback to learn muscle relaxation techniques. On occasion, a “trigger point” can be identified in the cervical muscles which appears to be a source of pain and tenderness. Local injection of an anesthetic or steroids at this site can occasionally provide substantial temporary relief of pain. A study by van Ettekoven reported signifi- cant improvement in treating tension headache with craniocervical training program (CTP — low load endurance program retraining patients to use optimal muscle groups) in addition and compared to standard physiotherapy, massage and postural retraining. There was a clinically significant improvement in patients who had CTP. There was no placebo group. A recent study from the Cochrane Database of systemic reviews titled “Non-invasive physical treatments for chronic/recurrent headache,” examined the efficacy of treatments such as spinal manipulation, stretching, therapeutic touch, transcutaneous electrical nerve stimulation (TENS), massage and amitriptyline (antidepressant). For the prophylactic treatment of chronic tension-type headache, amitriptyline was more effective than spinal manipulation during treatment. However, spinal manipulation was superior in the short term after cessation of both treatments. Other possible treatment options with weaker evidence of effectiveness were therapeutic touch; cranial electrotherapy; a combination of TENS and electrical neurotransmitter modulation; and a regimen of auto-massage, TENS, and stretching. For episodic tension-type headache, there was evidence that adding spinal manipulation to massage was not effective. For the prophylactic treatment of cervicogenic headache (related to neck injury), there was evidence that both neck exercise (low-intensity endurance training) and spinal manipulation were effective in the short and long term when compared to no treatment. Acupuncture and Complementary Treatments Acupuncture is a widely used therapy for a variety of medical problems, among them headache. While anecdotally patients appear to have significant improvement, rigorous clinical testing of efficacy is limited (based on Western Medicine methodology — randomized placebo controlled trials). Not surprisingly, there are no studies specific to the acoustic neuroma post-craniotomy headache population. However, several studies have been performed in tension headache patients. A recent multicenter-randomized controlled trial of 270 patients published in the British Medical Journal compared two treatments, standard needle acupuncture, and minimal acupuncture (minimal penetration at nonacupuncture sites — designed to be a sham procedure), to patients on a waiting list. There was Continued on page 10 9 Continued from page 9 no significant difference in improvement of the tension headache between the treatment groups, but both treatment groups did significantly better than the waiting list group. This suggests that a significant placebo effect was present. There are a tremendous number of non-traditional therapies for treatment of headache, which are beyond the scope of this article. In the chronic phase of pain management the goal is to reduce the perception of pain. This can be accomplished with traditional or non-traditional methods. Even so, not all patients may experience a benefit with any given treatment. Eastern medicine therapies and their derivatives such as acupuncture, relaxation techniques, yoga, massage therapy, and biofeedback may benefit some but not others, even if only by consistently providing a placebo effect. Viral Neuropathy A number of viruses that most have been exposed to (Herpes, Chicken Pox), have the potential to recur due to stress or trauma and can result in significant neurologic symptoms such as hearing loss, facial weakness, and facial pain. These neural-tissue specific viruses can also cause “shingles” or painful herpetic sores, sufferers of which can benefit from antiviral medication if initiated early during an outbreak. If pain persists long after the lesions have resolved post-herpetic neuralgia may be diagnosed. This condition is difficult to treat. There are a number of studies that have shown a measurable increase in indicators of an active viral infection following acoustic neuroma surgery. An unpublished anecdotal report found markedly elevated levels of viral antibodies in two patients who experienced severe unremitting pain immediately following acoustic neuroma surgery. This pain and headache were out-of-proportion to typical patients, and in these two patients the use of strong narcotics alone resulted in minimal improvement. Based on the viral levels obtained during surgery, anti-viral medications were promptly instituted and the pain improved. In one of these patients, the medication was stopped after 10 days, with recurrence of severe headache. The anti-virals were resumed for an additional 3 weeks and headache reportedly resolved. Thus, similarities between shingles or herpetic sores, and an “intracranial viral neuralgia” following acoustic neuroma surgery may exist, and for both an early treatment with anti-virals is warranted. 10 Stress Reduction, Antidepressants Clearly, the occurrence of severe debilitating headache after acoustic neuroma surgery creates a tremendous amount of stress. This can exacerbate and perpetuate the headache and reaction to pain in an ever increasing cycle. In addition, chronic pain produces profound alterations in the chemistry of the brain, and this often is manifested as overt clinical depression. For these reasons, it is important that patients with severe headaches after acoustic neuroma surgery seek additional care to treat the psychosocial aspects of the disorder. Family, coworkers, and health care providers need to understand the severity of these headaches and their associated impact on lifestyle and ability to function. Professional counseling is imperative when the headaches are producing disability or significant depression. Many antidepressant agents (e.g., Nortriptyline) also are excellent adjuncts to therapy of chronic pain, and should be prescribed in conjunction with other therapies listed above. Multidisciplinary Pain Center In the most treatment-resistant cases, it may be necessary to treat post acoustic neuroma surgery headaches in a multidisciplinary pain center. These centers are dedicated to treating chronic debilitating pain, and combine the talents of neurosurgeons, anesthesiologists, physical medicine specialists, psychiatrists, and physical therapists. Because acoustic neuroma headaches are caused by a variety of different factors, treating the problem fully frequently requires an intensive, combined approach such as that provided in a multidisciplinary pain center. Summary In summary, while short-term headaches that occur after acoustic neuroma surgery are common, severe and persistent headaches while less common can be difficult to treat. They have a profound impact upon the patient, and frequently produce significant disability, depression and a substantial decrease in quality of life. Although the specific causes of these headaches are not fully understood, there has been substantial progress in recent years in identifying several factors which may be involved in their development. Editor’s Note: This article is an excerpt from ANA’s “New Patient Information Booklet,” which can be ordered by contacting the ANA office. ANA Contributors October– December 2006. Thank You! ANArchAngels ($5,000 and above): Dave Krasne Sylvia De Santis TJX Foundation, Inc. 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