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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.
ANAngels
($2,500 and above):
Christine Bakalar
Lawrence Korman
Mahaney Roofing
Company/Charles
Mahaney/Kathy Boyd
Gerald & Linda Rae Swanson
Grand Benefactors
($1,000 and above):
Derald Brackmann, M.D.
Lori Desaye
Daniel & Debbie Gallington
David & Agnes Garino
John G. Golfinos, M.D.
Karla Jacobus
Suzanne Lerner
Robinson Foundation
for Robert & Linda Bailey
Richard J. Wiet, M.D.
James & Donna Zimmerman, DDS
John Zipprich
ANA Benefactors
($500 and above):
Jack Alweiss
Jeffrey C. Bodington
The Boston Foundation
for Mr. & Mrs. G. Barrie Landry
Frederick & Jane Buckner, M.D.
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Gail Fitzgerald
Gloria Herman
Joan & Douglas Morrow
The Rorer Foundation, Inc.
for Gerald Rorer
The Solot Family Foundation
for Michael Greenfield
Mary Elizabeth Wallerius
ANA Patrons
($250 and above):
Bruno DePalma
R.B. & R.F. Lippin
Robert Mann
John Rogers
Marilyn Rose
Frank Sabala
Hamed Sajjadi, M.D.
Continued on page 11
ANA Notes | March 2007
Richard J. &
Patricia A. Kutilek
Scott & Jane Kutzley
Cheryl LaFleur
Kenneth W. Lahr
D.S. & B.S. Lansing
John Leonetti, M.D.
Patricia & Rand S. Lieber &
Howard V. Peterson
Charles M. Luetje, M.D.
Herman & Patricia Luffman
William McCarter
Bill MacDonald
ANA Donors
Mike McCurtain
($200 and above):
David Meigh
Frank & Deborah Abruzzo
Mary Merriman
O. Gordon Brewer
Steven J. Millen, M.D. &
Thomas Check
Steven A. Harvey, M.D.
Roberto A. Cueva, M.D.
Eric Miller
Robert Jackler, M.D.
Gary F. Moore, M.D.
Walter Lee & Roberta K. Miller
Ashley Morgan
Stephen Reagan
Raj Murali, M.D.
Marc Schwartz, M.D.
Kanji Muro, M.D.
John & Karen Needy
ANA Donors
Douglas & Pamela Olson
($100 and above):
Marilyn Parks
Harvey Baumel
Lee Penland, Jr.
Gail Beale
Myles Pensak, M.D.
Thomas A. Bersani, M.D.
Penny Prosser
Eran Blanche
Stephen & Carol Raeber
Alan & Caron W. Blitz
Barry Raeburn
Joyce Bloom
Jeanne Rakowski
Lillian Bogolub
Mary Anne Rasmussen
Jane Branagan &
Kenneth W. Reichert, II, M.D.
Margaret O’Connor
Denise Reiner
Rose Marie Brekke
James P. Richards
Serafino Busceti
Barry & Joan Rosenthal
Ralph Cake, Jr.
Peggy Roth
John J. Calefato
H.L. & R.M. Salinger
Stephen J. Carter
Kenneth Schild
James P. Chandler, M.D.
Mark Severtson, M.D.
Robert Chernoff
Steven & Ellen Shapiro
Burton Cohen, M.D.
Jason Sheehan, M.D.
Steven B. Coleman & Ellen
James J. Slattery
Austin
Mel Sloan
John F. & Celeste Craemer
Joseph Speiden
Davidson Living Trust for
Roger Tanski
Alvin & Marcia Davidson
Rowena J. Taylor
Sharon Dorn
Michael Teixido, M.D.
Virginia & Don Ehr
Bruce Telander
Anthony & Eileen Essaye
Erik Toomre
Willard & Wanda Euhus
Norman J. Trebilcock
Jan Fell
Chris & Jennifer Van Arsdel
E. James & Eileen P. Ferland
Abe Van Klaveren
Hans Flinch & Nan Nixon
Gary & Cheryl Velasco
Ellen H. Fox
Anne Vickers
Neil G. & Adrienne Frank
Ruth Warwick &
Judith & Arnold Goldman
Carol M. Thomas
Michelle B. & Marvin
Elizabeth Waterman
R.Goldstein, M.D.
Elizabeth Weed
Joan Hansberry Grant
Rosemarie Wirth
M.D. & A.G. Green
Gloria M. Ziegler
Diane Gunn
Jacques A. Herzog, M.D.
ANA Friends
Phyllis W. Hoffman
($50 and above):
Janene M.
Georgia & Linda Joyce Adams
Holmberg, PT, NCS
Mr. & Mrs.
Glen Holmes
Harry Anderson, Sr.
Rose Marie Brekke
Dwayne Baldwin
Roger & Linda Howard
Alexander & Martha Huberts Sherry Ballance
Miguel Bamberger
Patricia Humphreys
Robert & Bridget Hutcheson Donna Barbara
Timothy J. Bardsley
Barbara Hyatt
Richard J. Barker
Marianne Jung
Donald Barnes
Joan Jeffri Keller
Miles & Robin Biddy
Christine & Kurt Kondzela
Continued from page 10
Karen Scharff
Kelli Ann &
William Slattery, III, M.D.
Society of the Transfiguration
for Elizabeth Matthews
Phyllis Steinhart
Philip E. Stieg, M.D.
Stuart TenHoor
John M. &
Susan S. Tew, Jr. M.D.
March 2007 | ANA Notes
Marlene Boland
Susan Borchert
Robert Lee & Patricia A. Boyd
Sue Ann Brownfield,
Laurence W. Hart,
Debra L.Tyre
Joana Busey
Marvel Butcher
Norman & Barbara Campbell
Amelia Cheng
Barbara Cohen
Joan P. & Paul R. Contardo
Orville L. Corley, Jr.
Nancy Counts
Janet Curtis
Clinton & Bernita Daharsh
M.E. & J.M. Daniels
Maria De Grandis
Mr. & Mrs. Ralph Dickens, Jr.
Paul & Phyllis Ebeling
Rex R. Edwards
Kit D. Farber
William T. Fields
Cabell B. Finch
Doris R. Foster
Mitchell Friedman
Judith Fujito
B. Duston Girton
ANA Membership
Benefits
n
Quarterly newsletter
n
Information booklets
n
Biennial symposium
n
n
Local support group
network
Website with
Discussion Forum at
www.ANAUSA.org
Barbara J. &
Donald H. Gleason
Charlotte Godsey
David M. &
Dorothy R. Goldberg
Frank & Ursula Goldner
Robert A. Franz &
Nancy S. Goldman
Retta Green
Susan F. & Michael D. Green
Joel & Fay Greene
Jean Greer
Sr. Annette Grisley
Giorgio & Laura Giuliani
Ormond Hammond
Joy G. Hamsher
Nancy Heeg
Sherry Hockstra
Monte M. & Joan C. Hoover
Pat Hopkins
Florence Hroziencik
John F. &
Norma B. Humphries
Pierre & Inge Husson
Barbara Jonas
Doris B. & Judith D. Johnson
Stanley Kaplan, M.D.
Anne Kisver
Martin J. & Karen Kurzer
Christine Larsen
Robert Ledwick
Virginia Leonard
Irwin Levin
Anne Lewis
Grace A. Lovell
Jerry & Wendy Macher, M.D.
Edward & Ann Madsen
Clark Maltby
Nadine Martinitz
Celine Mary
Margaret F. Maxwell
Philip Mayer
Marian & James McCarty
Corbin McGuire
Mark McLaren
Erica Menchenton
Robert & Delane Milne
David & Glenda Minkin
Cedric H. & Patricia A. Mitsui
Chris D. Moe
Marie Moore
Robert B. Morgan
Marsha Nakamura
Michael Neds
Jonell Nielsen
Earl Ourada
Mary Louise Parsons
Pearl Capital, Inc.
Cesidio & Rita Pellecchia
Cyril Pierce
Lawrence Pitts, M.D.
Herman & Platas
Marie & Paul Polsinelli
Beth J. Post
Patricia Powers &
Donald Ridgway
Peggy Preston
Mark Rathbun
Joseph J. & Gloria Roderick
Frederick & Joan Rohde
Janet Rolf
Stan Rorick
Donald & Cathy Rosicka
Michael Rozelle
Ernest Sadashige
San Diego
Gamma Knife Center
Gery Santora
Edward & Carol Saunders
Beaman Scarboro
Howard & Elaine Schain
Sandra Schechner
William H. &
Elizabeth M. Schwarting, Jr.
Jacqueline Scott
Martin Sechehay
Paul Silverman
David Skarshaug
Samantha Smith
Lewis Stein
Raymond Stolarczyk
Marc C. Stratz, CPA
Jolene Strong
Garland Sullivan
Loraine Sullivan
Constance Synwolt
Jane M. Tapp
Wayne & June Taylor
Mike Teller
Mr. and Mrs. B. L. Thomas
Peter Tong
Nancy & Michael Varanelli
Meryle Verner
Charles D. Vogel
Ellen Wallach
Daniel & Christine Waschow
John W. & Trudy Watson
James E. & Ellen E. Weaver
Bryan & Erica Willert
Robert G. Weiss
Family Foundation
Bob Williams, Ph.D.
Robert & Janice Williams
Ken Yoo
Leslie Zalles
In Honor Of:
Linda Adams
By Georgia Adams
Sallye & Andy Anderson
By Stephen & Carol Raeber
By Mr. & Mrs.
Harry Anderson, Sr.
Timothy Bardsley
By Joseph Eletz
Warren & Eloise Batts
By Harry & Kathleen McRee
Kathleen Bruss
By Richard &
Christine E. Hawthorne
Dr. Robert J. Camp
By Garland Sullivan
Michael Greenfield
By The Solot
Family Foundation
Edward R. Laws, M.D.
By Marilyn Rose
Rose Pinnisi
By Israel J. Heilweil
Alex J. Stevenson
By Samantha Smith
Betty Stoner
The Michael Quinlan
Brain Tumor Foundation
In Memory Of:
Betty Kaplan
By Stanley Kaplan, M.D.
Jane Ellen Newton Perry
By Barbara Bates
By Jeff Bodington
By Patsy C. Burch
By Patricia &
Joseph Burton
By Edward, Karen &
Ned Farnkopf
By Art &
Katharine Feidler
By Mitchell Friedman
John A. Weed
By Elizabeth D. Weed
Gift Memberships:
Steve James
By John L. Needy
Matched Gifts:
Wells Manufacturing
Company
For Frank Abruzzo
Physicians For
Their Patients:
Dr. R.E. Dickins, M.D.
For George Haggins
For Dana Bateman
Symposium
Financial Aid:
J.B. O’Connor (Bud)
Scholarship Fund:
Jane Branagan
11
M EMBERSHIP /D ONATION F ORM
1
My Information
2
My Support of ANA
MEMBERSHIP DUES
o Basic Annual Membership
o Basic International Membership
o Medical Professional Membership
Name
Address
City
(
)
Phone
State
DONATION
o Friend
o Donor
o Pre-treatment Patient
o Watch-and-Wait Patient
o Medical Professional
$35
$50
$100
Zip
E-Mail
3
3/07
o Post-treatment Patient
o Family Member or Other
My Payment
o Enclosed is my CHECK for $____________ Or,
o Please charge my CREDIT CARD for $____________________________
o MasterCard o VISA Exp. Date ________________________
Account # _____________________________________________________
Name as it appears on card _______________________________________
Signature ______________________________________________________
o I wish this gift to remain anonymous.
Your canceled check is your receipt. Funds received in excess of Annual
Membership dues will be acknowledged as a donation, and are tax
deductible to the extent of the law. Donations of $50 or more will be
recognized by letter and in ANA Notes, our quarterly newsletter.
o Patron
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4
$50
$100
$250
o ANAngel
$2,500
o ANArchAngel
$5,000
o Other
$__________
Total
$__________
$500
$1,000
My Special Gift Information
MATCHING GIFT My employer may match my donation.
(If possible, please enclose your employer’s matching gift form.)
Company Name __________________________________________
Address _________________________________________________
City______________________________ State_____Zip__________
TRIBUTE GIFT This donation is in o Honor of o Memory of
_________________________________________________________
Please notify (Name) ______________________________________
Address _________________________________________________
City______________________________ State _____Zip__________
Please make your check payable to and send to
Acoustic Neuroma Association • 600 Peachtree Parkway, Suite #108 • Cumming, GA 30041
600 Peachtree Parkway
Suite #108
Cumming, GA 30041
www.ANAUSA.org
NON-PROFIT
ORG.
U.S. POSTAGE
PAID
Permit No. 797
ATLANTA, GA
ADDRESS SERVICE REQUESTED
Celebrating 25 years of providing
information and support for
Acoustic Neuroma (Vestibular
Schwannoma) patients.
12
ANA Notes | March 2007