December 2014 ANA Newsletter - Acoustic Neuroma Association

Transcription

Founded in 1981
I NSIDE
Notes
Best Wishes for a happy
holiday season and
healthy new year!
Issue 132, December 2014
M EDICAL R EPORT
Local Support
Group Spotlight
Pittsburgh
TriState, PA .............2
Neuromuscular Retraining for Facial
Paralysis after Acoustic Neuroma Surgery
Local Support Group
Meetings Recap........3
B Y J ACQUELINE D IELS , OT
Voyages
My Acoustic Neuroma
Chapter: Learning To
Accept Help ...............4
According to the 2012 ANA patient
survey, facial paralysis is one of the
common problems experienced after
acoustic neuroma surgery, affecting
one third of respondents.* Along
with hearing and balance related
issues, facial paralysis is one of the
most distressing.
Our face identifies us, unique
from all other individuals. Our face
conveys our emotions and communicates unspoken thoughts. Facial expression is so much a part of us we
are barely aware of it. 80% of our interpersonal communication is nonverbal via facial expression. The inability to move one’s face is not a
simple cosmetic problem, it is a communicative disorder. While therapy
for other disorders is commonplace,
rehabilitation for facial paralysis is
often neglected and patients are left
to their own devices.
Facial retraining is a patient-centered approach to the non-surgical
treatment of facial paralysis, paresis
(weakness) and synkinesis (abnormal
movements) using motor learning
techniques created specifically for facial nerve and muscle paralysis. It is
based on research that indicates there
is no time limit to when functional
improvements can be learned after
injury, given an intact nerve.
Facial retraining should not be
Adventure in
Neurosurgery:
My Acoustic
Neuroma Story...........6
ANA News.................9
ANA Contributors ...11
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.
The physicians and organizations
listed have self-reported data to
meet criteria established by ANA for
having substantial experience in
treating acoustic neuromas. The listings should NOT in any way be construed as an endorsement or recommendation by ANA. The ANA does
NOT make any independent determinations concerning the qualifications of any listed physician or
organization. It is every individual’s
responsibility to verify the qualifications, education and experience of
any healthcare professional.
*ANA patient survey responses include
patients who had surgery many years ago
as well as more recently. Medical advances
are making a difference in outcomes.
confused with non-specific general
therapies commonly used to treat facial paralysis. It was developed specifically for people suffering from facial
paralysis as a result of facial nerve injury caused by acoustic neuroma,
Bell’s palsy, Ramsay-Hunt syndrome,
traumatic injury, and congenital causes. It requires a thorough understanding of facial nerve and muscle anatomy, physiology and function. Its goal
is to reestablish the exquisite movements fundamental to expression, interpersonal communication, eating,
drinking, speaking, blinking, and other, normally spontaneous, functions.
Treatment begins with a comprehensive evaluation including video,
photographs, a thorough clinical assessment and, where applicable, surface electrode electromyography
(sEMG). All facial muscle groups are
evaluated to determine degree of
voluntary movement, spontaneous
movement, and presence of synkinesis. Compliance and active participation through a daily home program
are essential to achieve success.
Flaccid Paralysis Issues
Surgeons take painstaking care to
protect the facial nerve from injury
during surgery. In some cases, the
facial nerve is unavoidably affected.
Immediately after surgery the face
may be completely paralyzed. The
surgical side may droop. This is
called “flaccid paralysis.”
Decreased tearing and inability to
close the eyelid can cause the eye to
See Medical, page 8
Jacqueline Diels
is a leading authority on nonsurgical facial
neuromuscular
retraining, a therapeutic approach to
the treatment of
facial paralysis,
paresis and synkinesis. She received
her degree in occupational therapy at
the University of
Wisconsin in 1985
and has dedicated
her practice there
exclusively to the
treatment of people with facial
paralysis. She lectures extensively to
patients, physicians and therapists, has authored
publications and
trains therapists
in the U.S. and
abroad. Jackie
currently serves
on the Medical
Advisory Board
of ANA.
SUPPORT GROUP SPOTLIGHT: Pittsburgh TriState, PA
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. ANA is a 501(c)(3)
non-profit organization.
Published by the Acoustic Neuroma
Association, located in metropolitan
Atlanta, four times a year (March,
June, September, December).
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]
Chief Executive Officer
Judy B. Vitucci
BOARD OF DIRECTORS
OFFICERS
President
Vice President
Alan Goldberg
Karla M. Jacobus
New York, NY
Cary, NC
Treasurer
Secretary
John Gigliello,
David Puzzo,
Niskayuna, NY
St. Petersburg, FL
MEMBERS AT LARGE
Luke Bagato, Western Springs, IL
Laura Barbaro, Andover, MA
David Begnaud,
West Hollywood, CA
Marla Bronstein, Bellingham, WA
Roberta C. Hutchings,
Westminster, CO
Leah Keith, Los Angeles, CA
Chad Nye, Lakeland, FL
Joel Perrell, Jr., Baltimore, MD
Miranda Sacharin, New York, NY
Tom Sattler, MD,
San Francisco, CA
Kristine Siwek, Oconomowoc, WI
Deborah R. Walls, MSW, LCSW,
CDVC, Whiteland, IN
Immediate Past President
Jeffrey D. Barr,
West Palm Beach, FL
Founder/President Emeritus
Virginia Fickel Ehr, Brevard, NC
© December 2014
2
Support Group Fulfills Need to Meet
Other AN Survivors Personally
B Y J OE VARGO
Group Leader/Facilitator
During my acoustic neuroma diagnosis and
treatment, I felt somewhat isolated; what was
missing was the personal contact with an AN
survivor, hearing their voice and words. I did
exchange lots of emails with an ANA Support
Group Facilitator on the Willing to Talk List, but
it's not the same as looking into the eyes of an
AN Survivor. That's what I wanted to do when I
made it to the other side of my AN treatment.
Almost three years ago I was diagnosed with
a less than 1 cm acoustic neuroma. I recall my
primary care physician saying these are typically
benign; however, what I remember the most are
the words “brain tumor” and envisioned my life
changing before my eyes.
In the days and weeks that followed, Barbara
(my wife and life partner) spent much time
searching the internet, ultimately finding ANA.
She prompted me to request information. Between the information provided by a neurotologist and the ANA, we took the time to read,
digest, discuss, and pray on the next steps. Ultimately, I decided to have my AN (named Sam)
surgically removed.
I had no experience with a support group,
either as a member or as a leader/facilitator.
What I found to be utterly amazing was the
extremely warm welcome at my initial meeting.
In fact, this was my first encounter with other AN
patients. I simply wanted to get to know these
folks, not just as fellow AN patients, but as colleagues on a similar journey. What I found was a
group of caring, warm, and welcoming patients
and caregivers who were as concerned about my
well being as I was about theirs.
Our second meeting included a presentation
by a physical therapist who specialized in facial
issues frequently encountered as a result of AN
treatment. This meeting was attended by new
members to the group who were a bit younger.
After the guest speaker left the meeting, I
noticed a mingling by age groups. There was a
sharing of new experiences and a discussion of
the medical advances that have occurred. Also,
there was some exchanging of contact information which has led to Facebook Friending.
Joe not only completed the Pittsburgh Marathon
this spring, but he also raised funds for ANA!
Our most recent meeting centered around
two important goals:
1) Growing a support system among the caregivers (absent the AN patients). During the past
months, I became aware that caregivers naturally focus on the needs of the patient but have different concerns. I realized that we, the patients,
needed to hear their side of our journey.
2) Providing patients an opportunity to participate in The Yale University Acoustic Neuroma Study. While the caregivers conversed, the
patients met in a separate room participating in
the AN study.
When the patients and caregivers came back
together as a group, patients were enlightened
hearing the caregivers’ experiences.
Even though my experience in this role as
a Support Group Facilitator is somewhat limited (12–18 months), I have developed friendships that will likely pass the test of time. And to
think that we’ve all come together because of a
common diagnosis.
Our treatments and our AN journeys may be
different, as are our daily challenges, but we all
come together to support, care and share these
trials openly and honestly with each other. As
well we celebrate and rejoice with each accomplishment and milestone achieved. I was pleased
to share a recent accomplishment with my
group: I completed the Pittsburgh Marathon this
past spring — the first since my surgery!
At the end of each of these meetings I can
walk away saying “This is what I believe a Support Group is all about.”
ANA Notes | December 2014
2014 LOCAL SUPPORT GROUP MEETING RECAP
Editor’s Note: ANA
annually publishes a recap
of local support group
meetings from the past year
(January 1 to December 31,
2014). Leader/facilitator
information, meeting dates
and topics are reported.
2014 Meetings
to date: 126
Meeting attendance
to date: 1,962
Join now if you are not currently
active in a local support group.
Contact the leader nearest you
so that you may benefit from
this program.
For complete support group
information, including newly
formed groups, go to our
website at www.ANAUSA.org.
Participating in a local support
group provides the opportunity
to have contact with other AN
patients who have gone through
a similar experience. Group
interaction is important and can
be extremely beneficial!
ALABAMA, Mobile
Marye Alice Pinson,
251-626-2815,
[email protected]
Reba Cuevas Ladner,
228-669-9238,
[email protected]
03/29 Caring & Sharing
11/01 Current Techniques in
Facial Nerve Rehabilitation;
Caring & Sharing
ARIZONA, Phoenix – Recruiting
Mike Simon
(stepped down March 2014)
ARIZONA, Tucson – Recruiting
Carol Franklin, 520-722-8340,
[email protected]
04/27 ANA 2013 Symposium
Workshop Audio
Presentation – Assessment and
Rehabilitation of Cognitive
Issues associated with AN;
Caring & Sharing
11/09 ANA Educational
Webinar Recording and
Discussion – Acoustic
Neuroma and Balance Issues:
Pre- and Post-Treatment
Management;
Caring & Sharing
CALIFORNIA, Los Angeles
Leah Keith, [email protected]
David Begnaud, 337-962-5056,
[email protected]
02/15 Caring, Sharing &
Encouragement
05/17 Acoustic Neuroma
Treatment Decision Making: A
Surgeon’s Perspective; Caring,
Sharing & Encouragement
Encouragement
CALIFORNIA, Palo Alto
02/06 Coping with the
Diagnosis of Acoustic
Neuroma – Discussion and
Q&A
04/03 The Role of the NeuroOncologist in Treatment of
Acoustic Neuroma Patients
06/05 Current Status of
Hearing Aids for Acoustic
Neuroma Patients
08/07 How Acoustic Neuroma
Pre-Treatment Symptoms
Respond after Treatment
10/02 Acoustic Neuroma Case
Presentations and Panel
Discussion
12/04 Vestibular Therapy
CALIFORNIA, San
Francisco/Oakland
Carol Most Walker, 510-7246989, [email protected]
Tom Sattler, 415-864-0764,
[email protected]
03/25 The Yale University
Acoustic Neuroma Study
05/20 SoundBite Hearing
Device, Information &
Demonstration;
The Yale University Acoustic
Neuroma Study
09/30 Managing Tinnitus &
Sound Sensitivity
(Hyperacusis)
Recognition
ANA works with many dedicated and enthusiastic
volunteers who serve as ANA ambassadors in their
local communities.
ANA Local Support Group Leaders/Facilitators are
very special individuals. They are committed to making opportunities available for individuals to meet,
network, and gain knowledge about acoustic neuroma topics of interest.
In addition, they devote countless hours in reaching
out to others that are seeking answers and in need of
support. Their contributions continue to make ANA
a very meaningful organization.
We appreciate the personal commitment each of our
volunteers makes investing their time in support of
our mission.
Thank You
Thank you to all of the Local Support Group Leaders/Facilitators and Co-Leaders. Your participation in
this important ANA program is greatly appreciated.
Thank you to all of the presenters at the Local Support Group meetings. Your educational information
is invaluable to those who attend the meeting.
Patty Winter, 301-219-6661,
[email protected]
01/25 Sharing & Networking
05/17 Sharing & Networking
09/13 Facial Issues &
Rehabilitation Therapy
Options;
Sharing & Networking
FLORIDA, Ft. Lauderdale
Nanci Heinmiller,
561-391-2341,
[email protected]
Gina Napoles, 561-865-5133,
[email protected]
Device – Information &
Demonstration;
Caring & Sharing
05/18 Management Techniques
& Treatment Strategies for
Tinnitus; Caring & Sharing
10/26 Current Management of
Acoustic Neuromas;
Caring & Sharing
FLORIDA, North – Recruiting
Joan Vanderbilt, 904-287-8132,
[email protected]
Julie Schiener, 904-704-8052,
[email protected]
Acoustic Neuroma Study;
Caring & Sharing
FLORIDA, Orlando – New
Chad Nye, 863-248-2927,
[email protected]
Elsie Bonilla, 407-273-5697,
[email protected]
02/25 Meet & Greet;
Caring & Sharing
07/12 Meet & Greet;
Caring & Sharing
GEORGIA, Atlanta
CALIFORNIA, Sacramento
Hazel Berman, 916-983-9313,
[email protected]
CALIFORNIA, San Diego
Wanda J.K. Crook, PT,
760-787-0931,
movementlearningcenter
@att.net
Helen McHargue, 760-7280309, [email protected]
02/08 ANA 2013 Symposium
Workshop Audio Presentation
– Coping and Beyond with
the Emotional Impact of an
Acoustic Neuroma;
Caring & Sharing
Caring & Sharing
08/10 Assisted Listening
Devices and Using Latest
Technology to Improve
Hearing; Meet & Greet;
Caring & Sharing
11/15 Vestibular and Balance
Rehabilitation; Meet & Greet;
Caring & Sharing
Christina Esfehani,
650-575-6990,
[email protected]
Mark McLaren, 925-838-8175,
[email protected]
December 2014 | ANA Notes
11/18 Radiation Therapy
Options for Acoustic Neuroma
Patients; Combining
Treatment Modalities to
Manage Large Tumors
COLORADO, Denver
Roberta Hutchings,
720-225-7421,
[email protected]
Polly Wilson, 303-997-5758,
[email protected]
Device – Information &
Demonstration;
Caring & Sharing
Caring & Sharing
10/11 Meet & Greet;
Caring & Sharing
COLORADO, Grand Junction
Carol & Jack Mayhew,
970-818-9450,
[email protected]
Caring & Sharing
10/11 Tinnitus Retraining
Therapy; Caring & Sharing
Cindy Jones (stepped down
February 2014)
Carol Ann Hayes (stepped down
February 2014)
Meredith Daly, 404-659-4032,
[email protected]
02/15 Vestibular Rehabilitation
for Balance Issues/Dizziness;
Neuromuscular Facial
Retraining;
Tinnitus Reduction Programs
11/08 Phonak CROS/BiCROS
Hearing Device System;
Caring & Sharing
GEORGIA, Central - New
Kathy Rhoades, 478-952-8476,
[email protected]
01/25 Meet & Greet;
Caring & Sharing
ILLINOIS, Chicago
Ellen Nuebel, 847-971-0896,
[email protected]
Caring & Sharing
10/11 Meet & Greet;
Caring & Sharing
DC, Washington
Dave Atwell (stepped down
December 2013)
Allison Shaffer, 301-279-9166,
[email protected]
MEDICAL ADVISORY BOARD
Co-Chairmen
Rick Friedman, MD, PhD
Neurotology/Radiosurgery
Los Angeles, CA
Michael J. Link, MD
Neurosurgery/Radiosurgery
Rochester, MN
Members
David W. Andrews, MD
Philadelphia, PA
Patrick J. Antonelli, MD
Neurotology
Gainesville, FL
Babak Azizzadeh, MD, FACS
Facial/Nasal Plastic Surgery
Beverly Hills, CA
Fred Barker, MD
Neurosurgery
Boston, MA
Derald E. Brackmann, MD
Neurotology
Los Angeles, CA
Steven D. Chang, MD
Stanford, CA
Elizabeth B. Claus, PhD, MD
Epidemiology/Neurosurgery
Boston, MA
H. Jacqueline Diels, OT
Facial Retraining Specialist
McFarland, WI
Aaron Fay, MD
Ophthalmic Plastic Surgery
Boston, MA
Douglas Kondziolka, MD
New York, NY
Robert E. Levine, MD
Ophthalmology/
Ophthalmic Plastic Surgery
Los Angeles, CA
John K. Niparko, MD
Otolaryngology
Los Angeles, CA
Andrew T. Parsa, MD, PhD
Neurosurgery
Chicago, IL
J. Thomas Roland, Jr., MD
Neurotologyy
New York, NY
Marc Schwartz, MD
Neurosurgery
Los Angeles, CA
Patrick Shumrick, BS, MHS, DPT
Physical Therapist
Cincinnati, OH
Rafael J. Tamargo, MD
Neurosurgery
Baltimore, MD
Fred F. Telischi, MD, FACS
Neurotology
Miami, FL
John M. Tew, Jr., MD
Neurosurgery
Cincinnati, OH
Philip V. Theodosopoulos, MD
Neurosurgery
San Francisco, CA
Chairman Emeritus
Albert L. Rhoton, Jr., MD
Gainesville, FL
Continued on page 10
3
VOYAGES
ANA INTERNATIONAL
CONTACTS
My Acoustic Neuroma Chapter
Learning To Accept Help
B Y M ARYELLEN B ENULIS ,
Orwigsburg, PA
turned to what choices I might have. It became
clear that I had a lot to learn. I was anxious to
get the answers I needed, but the waiting game
Words have power. Simply put, they can
had begun, because first I had to get into a spechange your world. And, like many of you and
cialist to learn more about the particulars of
your families, I will always remember my docmy specific tumor. As I would soon discover,
tor’s words when he told me that I
many factors, like tumor size, locahad an acoustic neuroma.
tion, patient age and overall health,
The diagnosis came after months
symptoms, and even healthcare coverof testing and trying to pinpoint what
age, need to be considered before a
was causing a feeling of numbness
treatment plan is decided.
in my tongue (which at the time I
While waiting for my Philadelphia
could only describe as a metallic taste)
appointment, I kept researching and
and now leading to a feeling of lightgathered as much information as I
headedness.
could. I was lucky there were solid
In retrospect there had been earlier
options for me in my home state of
signs. I had seen doctors as long as two
Pennsylvania. I also sent a copy of my
years prior to my diagnosis for an ear
MRI to California through the advice
infection and a feeling of fullness in
of people from the ANA Forum. I
my right ear, but because my hearing
couldn’t believe when a doctor from
was only slightly off, it took until my Usually the one
there called me one evening and spent
to take care of
symptoms increased in number and
time answering all my questions.
others, Maryellen
severity for my doctor to order the
I also emailed two Support Group
found it difficult
MRI that would change everything.
leaders as well as those who were on
to need help
from family
I had just received good news
the Willing to Talk list. If nothing else,
and friends.
from one specialist that the sundry
I wanted to make an informed deciof bloodwork ordered for any kind of immune sion once my specific options were on the table.
disease all came back looking good. That
One thing that seemed to be coming crystal
feeling of relief lasted only a few hours. My
clear is that each case is different and specific,
local ENT called the same evening with my
depending on the many variables. Each of
MRI results. He told me he would like me to
us has challenges, and in many ways it’s not
see some colleagues of his in Philadelphia. I
the challenges that define us but how we
grabbed a pen and tried to scribble as much of handle them. I was learning how I would hanwhat he said as I could… “acoustic neuroma,
dle mine.
BRAIN TUMOR!, most likely benign.” His
‘I was used to being a caretaker and
words seemed almost in a foreign language.
‘Some of the first and best information
I found was at the ANA website.’
I then shared the information with my husband…and I know changed his world with my
words. We went to the Internet to begin our
learning process. My degree is in journalism, so
I immediately went into research mode. Some
of the first and best information I found was at
the ANA website. It was a site I would visit
many times in the days and months to come.
I was incredibly relieved to learn that this
was a survivable diagnosis. My attention then
4
was very uneasy about needing to
be taken care of.’
I was a 54-year-old wife and mom of 18
and 24 year old sons. I have worked over the
years as a freelance proofreader, editor, and
guest teacher. The fragility of life has been
front and center throughout my years, but I
was to this point in a supporting role. My
mom survived a massive heart attack when
she was 45 and then at 50 became a laryngectomee (had her voice box removed due to cancer), my dad died because of heart complicaContinued on page 5
Australia
Queensland Acoustic Neuroma
Association
P.O. Box 254
Stones Corner, Queensland 4120
www.qana.asn.au
[email protected]
of Australia (ANAA)
c/o Better Hearing Australia
5 High Street
Prahran, Victoria 3182
www.anaa.org.au
[email protected]
Canada
of Canada (ANAC)
Theresa Forson,
National Coordinator
P.O. Box 193
Buckhorn, ON, K0L 1J0
www.anac.ca
[email protected]
Denmark
Danish Acoustic Neuroma
Association
Ulla Rasmussen, Chairman
Dalso Park 40
3500 Vaerlose
Denmark
www.acusticusneurinom.dk
[email protected]
Germany
— Germany
Dr. Emmerich Sackers,
Chairman
Feldberg Address 1
79279 Vorstetten
Germany
www.akustikus.de
Great Britain
British Acoustic Neuroma
Association (BANA)
Oak House B,
Ransom Wood Business Park
Southwell Road West
Mansfield, Nottinghamshire
NG21 OHJ
www.bana-uk.com
[email protected]
New Zealand
of New Zealand Inc.
Heather Deadman, President
13 Akatarawa Road
Reikorangi, Waikanae
New Zealand
www.acousticneuroma.org.nz
[email protected]
Medicare Ruling
Announcement
The Centers for Medicare and Medicaid Services (CMS) announced a final
ruling that auditory osseointegrated implants (such as BAHA) are not hearing
aids and, therefore, will remain a covered
benefit. In July they issued a proposal that
would have eliminated this coverage. The
July proposal is now reversed.
This ruling reflects the success of a concerted effort by patient groups including
acoustic neuroma patients, medical professionals, medical organizations, and the
bone anchored hearing device providers.
This is great news for many new and
existing users for the surgical boneconduction devices like Baha and Ponto
devices in the AN community.
With this ruling the Sonitus Medical
SoundBite, however, will not be covered
by Medicare.
Thank you for your efforts in getting
the proposal ruling reversed. We are confident that ANA played an important part
in publishing the information about the
proposal and encouraging you to let your
voice be heard.
See our website for additional information at www.ANAUSA.org.
plan suggested because I still had decent
hearing in my right ear that 26 sessions
of radiation might be best. I immediately
responded, “That’s not possible.” I said
that because the treatments were in the
heart of Philadelphia, remember that 90
long miles which included the dreaded
Schuylkill Expressway. My trip to this
appointment took 3 grueling hours. How
could I make that journey for 26 days?
My husband assured me we could do it. I
was reluctantly convinced and ultimately
decided I would somehow journey to
Philadelphia for 26 sessions of radiation.
would be time we might not have otherwise taken, given everyone’s busy schedules…and from those words on, I was
able to relax and optimistically view the
trips to and from Philly. One day it was
time with my husband; another, my son;
my brother; my brother-in-law; and my
dear sister-in-law from Georgia who actually totally uprooted her life and moved
in with us for the better part of a month.
With their help (and many others who offered), I was able to complete treatment
in 5+ weeks. It wasn’t always easy, but
they made it easier. I learned how to graciously accept help.
In April I returned for my one-year
post-treatment check-up. The tumor
looks stable, which my doctor said is a
win for now. I’ll take that as good news.
I have met many supportive, positive
people along my journey so far. I have attended Support Group meetings and
many webinars. I am still learning along
the way. Because I did not have surgery to
remove my tumor, I live with knowing it
is still there and still causes things like my
numb tongue, tinnitus, and minor balance challenges.
By listening to others, I have learned
there are ramifications to any of the treatment choices. Most of us are left with
some challenges, hopefully manageable
and minor in the grand scheme. I am
grateful for having had a choice of treatment and having the resources to make
the best decision for me.
My acoustic neuroma chapter began
with my doctor’s words. Of course, the
diagnosis changed my life. The words of
my friends and family have helped me
through a difficult time. I have evolved
and learned much within this chapter and
for that I remain grateful and hopeful.
ANA does not endorse any commercial product
or medical procedure.
VOYAGES
Continued from page 4
tions at 55, my oldest brother is thankfully in remission from non-Hodgkins lymphoma diagnosed when he was 42, and
my middle brother has had challenges
ranging from heart disease and diabetes
to cancer. Our struggles, I’m sure, are like
many you face. Some of us have more,
some have less.
I was used to helping take care of people. It was very difficult for me to tell my
sons and extended family about my diagnosis. I really didn’t want them to worry,
but I felt I needed their prayers. I was
used to being a caretaker and was very
uneasy about needing to be taken care of.
The battery of specialist visits finally
began…ENT, hearing test, balance test,
neurosurgeon, radiologist. My learningto-accept-help phase also began. Philly is
some 90 miles from my home, separated
in part by the Expressway…a mere 8+
miles of which some days take over an
hour. My husband insisted on driving me
to each of these information-gathering
appointments.
Over the course of a few weeks, I
learned I was lucky enough to have a few
treatment options — surgery, Gamma
Knife, or fractionated stereotactic radiation (FSR). Because my AN was 2.5 cm
and symptomatic (numb tongue, balance
issues, some hearing loss), I was in the
“time to get treatment” phase.
I also learned with this diagnosis there
is no one size fits all solution. I did the
research, saw a lot of doctors, asked a ton
of questions, had a bunch of tests, talked
with those who love me, prayed, and then
cautiously and optimistically decided on
a plan.
I vividly remember when one of the
specialists first discussing my treatment
‘…instead of viewing it as
inconveniencing others, that
I think of it as spending
quality time (during the
commute) with people who
love me.’
A plan started to materialize. Because
of the challenge of the route and traffic,
my family was not comfortable with me
making the trips solo, so they developed a
schedule of alternating drivers for me.
Asking people to take time out of their
day to do this was a very big sticking point
for me. I am used to and comfortable with
being the one who takes care of others.
It was uncomfortable for me to inconvenience others. I really struggled with
it…until some simple words once again
changed my life, gave me an attitude
adjustment. I confided in a dear friend of
mine that I was struggling with asking so
many people to take chunks of time out
of their week to cart me around. She very
wisely suggested that instead of viewing it
as inconveniencing others, that I think of
it as spending quality time (during the
commute) with people who love me. It
5
VOYAGES
Adventure in Neurosurgery: My Acoustic Neuroma Story
B Y M ARY D UNGAN T HOMAS
Fountain Inn, SC
Looking back, it all seems so clear. All the
signs were there — fullness in the ear, balance issues, headaches. But by the time I
was diagnosed, the headaches had become excruciating. They overshadowed
the other symptoms. And of course, I had
never even heard of an acoustic neuroma.
My Adventure In Neurosurgery began
in August 2011, when I was diagnosed
with a brain tumor at age 47. My initial
reaction was — relief. An unusual reaction, perhaps, but given the past several
months of unrelenting headaches, the engineer in me was relieved to finally have
an actual, physical cause. “There is a tumor. It is operable. We can fix this.”
For over a year, I had been seeing my
primary care physician for the headaches.
They had been attributed to migraines,
stress, even peri-menopause. And although they felt nothing like allergies, I finally consulted my ENT out of sheer desperation. With a history of sinusitis, I had
a decade-long relationship with him.
However, when a CT confirmed acute sinusitis — again — I was stunned. This
headache just felt different. “It feels like
someone cracked my skull open with a
baseball bat.” He listened. He agreed that
“maybe something else is going on here.”
He ordered the MRI that revealed the
acoustic neuroma, and for that, I credit
him with saving my life.
My husband and I met with a highlyregarded local neurosurgeon who had operated on AN’s in the past. However, he
declined to perform my surgery, explaining that acoustic neuromas are rare, surgery is tricky, and my AN was large — 3
cm — with brainstem compression. He
recommended two specialists within driving distance, both neurosurgeons with extensive AN experience. Before we left, he
specifically cautioned us against having
the surgery performed locally. And so the
local neurosurgeon who declined my case
became the second doctor to whom I owe
a debt of gratitude.
Things moved quickly after that. We
6
A Virginia Tech football fan, Mary and
her husband, Danny, finally return to
enjoy a game.
visited the first AN specialist. We immediately felt comfortable with him, and with
his treatment proposal. He explained the
possible outcomes — hearing loss, facial
paralysis, balance loss. And although he
offered no guarantees that surgery would
relieve the headaches, I was ready to proceed. We scheduled the surgery for late
September.
I felt almost no anxiety about the tumor
or the upcoming surgery. Everyone around
me was very concerned, but I had survived
difficult circumstances before, and faith is a
very real part of my life. I felt secure in the
belief that I would have a good, headachefree outcome. It turned out I was right —
I just underestimated how difficult the
recovery process would be.
My first post-op memory is of waking
up in recovery with my surgeon holding
my hand, gazing at me sadly. I remember
thinking, “Either he’s the nicest doctor
ever, or something went really wrong.” I
realize now that he was watching my face
for signs of movement.
As it turned out, the local neurosurgeon was right — AN removal is tricky.
We knew my tumor was large, but it was
also sticky, and it was complicated. The
acoustic nerve was sacrificed, and surgery
was stopped when the facial nerve signal
weakened. The facial nerve was preserved,
but it was injured, and I awoke with complete facial paralysis and permanent hearing loss on the AN side. Still, all but a sliver of the tumor had been removed, and I
was relieved it was gone. The facial nerve
was expected to recover over time. And
aside from the initial surgical pain, the
headaches disappeared. All in all, it was a
very good outcome, and I am thankful for
the excellent care I received.
The incision healed without incident,
and after five days, I was released from the
hospital with orders for in-home therapy
and strict instructions for taking care of
my eye. I realized how fortunate we were
to be within driving distance from home,
because my balance was slow to recover,
and I left the hospital on a walker.
We attacked the recovery process with
a vengeance. Physical, occupational, and
speech therapy became the core of our
daily routine, and I soon graduated from
a walker to a cane. After a month, I was
released to outpatient therapy, and I began to venture out into the world.
‘…I felt a small twitch in my
cheek. We celebrated like we had
won the lottery.’
The Christmas holidays were soon
upon us, and we took our Adventure In
Neurosurgery shopping, which proved to
be excellent vestibular therapy. I supplemented therapy with Wii Fit, Pilates, Zumba — anything we could think of to nudge
my post-surgical self toward recovery.
Progress came, albeit, at its own pace, and
after four months, I abandoned the cane.
Similarly, with speech therapy,
progress was slow and intermittent. After
six weeks of total facial paralysis, I felt a
small twitch in my cheek. We celebrated
like we had won the lottery. Over time, we
saw movement at the corner of my
mouth, and my eye gradually began to
tear. At eleven months, I was finally able
to close my eyelid. After three years, I still
continue to see improvement.
After four months, I returned to my job
as a research engineer in a large multinational corporation. My recovery had
plateaued a bit, and we felt the social interactions and sheer normalcy of the workplace would be beneficial. I started with
partial days and gradually progressed to
full-time. Still, for several months I was exhausted at the end of each day. Even now,
fatigue is something I struggle with.
VOYAGES
I spent the first two years so focused
on physical recovery and returning to
work, that I overlooked much of the emotional impact. I told myself that beauty
originates from within, so my facial
droop doesn’t matter. I told myself that
unilateral hearing isn’t so bad — many
people are totally deaf. I reminded myself
I was lucky to be alive — this tumor
could easily have gone undiagnosed until
it killed me, or — as so many pointed out
— have been cancerous. And all those
things are true. But it is also true that this
experience affected my life in some very
significant ways. And by extension, it impacts the lives of my loved ones. After
about two years, those emotions that I
had been rationalizing away finally burst
through, and they hit me like a tidal wave.
‘I realized I was unprepared for a
lifetime of hearing loss, of balance
loss, of constant fatigue.’
The emotional breakthrough began
when our dog, Beamer, escaped the fence.
He ran into the woods behind our house,
and I quickly lost sight of him. I could
hear him barking, but with unilateral
hearing, I could not tell where the sound
was coming from. I stood in the woods,
turning in slow circles, trying to locate my
dog, and I couldn’t. That was the first
time I truly felt disabled.
With the help of a kind neighbor (I
burst into tears on her front porch),
Beamer was returned home safely, but
this was a turning point for me. I realized
I was unprepared for a lifetime of hearing
loss, of balance loss, of constant fatigue.
But in all fairness, how can one truly prepare for something like this? Some things
must be experienced in order to be fully
understood. Yes, I’m thankful to be alive.
But these losses are real to me. And they
had to be processed, sooner or later.
‘I have come to know many
wonderful people as a direct
result of my tumor.’
The ANA Forum became a great resource to me. Through it, I found I was
not alone in dealing with the aftermath of
my tumor. I am encouraged by those who
preceded me on this path, and I try to encourage those who follow. I am amazed
by the stories.
The researcher in me wonders why our
outcomes are so varied. I consider my
case — blinding headaches led to the diagnosis, and thankfully, were relieved by
the surgery. Yet so many others have the
opposite experience — no headaches prior to surgery, but inexplicable pain, to the
point of disability, afterwards. The outcomes seem so…random. AN is a rare
condition, and there is much to be
The Yale University
Note: Important: If you have
started the survey, please make
sure that you provide all of necessary components of the survey
noted below:
■ Online questionnaire
■ Send to Yale
■ Saliva specimen
■ Signed Consent Form to
obtain a saliva specimen
■ Pathology or MRI Report
to confirm eligibility
■ Signed Consent Form to
obtain medical records
learned. While we search for answers, it is
immensely reassuring and informative to
share with others in this situation.
My Adventure In Neurosurgery has
been difficult at times. But there have also
been many blessings. Because the physical
impact on me was so obvious, people I
knew only casually expressed a genuine
interest in my story, opening doors for me
to share my faith. I have come to know
many wonderful people as a direct result
of my tumor. And I am grateful for those
medical professionals who took me seriously, and treated me with such skill, respect, and care.
At this point, I wish I could say everything is back to normal. But the reality is,
I don’t know what lies ahead. I do, however, hope for the best. And I am certain
there is a larger purpose to this; I just
don’t necessarily know what it is.
I’d like to share one final memory.
With the vestibular deficit, crowds and
noise can still send me into a tailspin. But
I love college football, and I wanted to return to my alma mater, Virginia Tech, for
a game. So in August 2014, three years after the Adventure began, we joined the
crowd of 65,000 in Lane Stadium — one
of the loudest stadiums in college football.
I was sensible about it, and wore earplugs.
But I also screamed, jumped — essentially, I behaved normally. And I had a blast.
And so the Adventure continues.
ANA has awarded a grant to the Yale University to assist in
the funding for this first phase of the data collection.
Don’t miss this opportunity to participate in the first AN causation research study.
What is the goal of the study?
Little is known about risk factors for acoustic
neuroma. The purpose of this study is to discover why some people develop acoustic neuroma
while other people do not.
Who is organizing the study?
The study is organized by Dr. Elizabeth B.
Claus from Yale University.
Who can enter the study?
Any person over the age of 20 years with a
diagnosis of acoustic neuroma.
What are study participants asked to do?
There are two parts to being a study participant: 1) an online interview with questions on
medical and family history, and 2) a saliva
sample that will permit us to look at changes
in DNA. If you allow us, we will also review
your tissue specimens and MRI scans of your
acoustic neuroma. You may access the questionnaire and consents at the Yale Acoustic
Neuroma Survey.
Please go to our website to participate in the
survey at www.ANAUSA.org.
For questions, more information, contact
[email protected], 203-764-8422.
7
Medical
become very dry and at risk for corneal
damage. Careful eye care is critical to
make sure the eye remains protected and
healthy. Weakness of the lip and inner
cheek muscles can cause difficulty with
eating, drinking and speaking. The face
may pull uncontrollably toward the unaffected side.
There is no therapy to speed up recovery in the flaccid phase. The facial nerve
needs time to heal, like a broken bone in
a cast needs time to heal, before beginning therapy. The muscles are not damaged; they are not receiving an electrical
signal through the facial nerve. Like a
lamp in an electrical circuit, the bulb will
not go on if the wire is unplugged, no
matter how hard or how many times you
flip the switch. If the facial nerve “wire” is
affected by surgery, no amount of muscle
strengthening (e.g., smile as hard as you
can or pucker as hard as you can, etc.) will
improve the movement.
As the nerve heals sufficiently to conduct signals the muscles will move again.
Most people begin to recover within 6–12
months (even without therapy). Sometimes recovery begins so slowly that it is
difficult to detect. Small facial movements
will begin as the nerve heals and reconnects
to the muscles. Retraining should begin
when signs of recovery are present such as
increasing facial tone or slight movements.
People recover at different rates, but
the process typically progresses through
the first year to 18 months after surgery.
Electrical stimulation may be especially
detrimental in this stage as it appears to
delay nerve growth in animal models. It
does not aid or speed up nerve healing
and may cause undesired effects. It should
not be used at any time.
As the nerve continues to heal it can
“over-correct,” producing increased muscle
tone or spasm. At rest, the mid-face may
seem “swollen,” thick, or immobile. It may
feel tight or “heavy.” The fold (nasolabial)
between the side of nostril and corner of
mouth may deepen and the corner of the
mouth may be pulled back toward the ear.
The eye, which may have been wide open
just after surgery, might now appear overly
closed or squinting. Cords or bands may
be visible on the neck.
Deep tissue stretches to the tight mus8
cles decrease spasms and cramping and
improve mobility and comfort. As the
tightness and spasms subside the face becomes more comfortable, supple and flexible, improving function. During this
phase, abnormal movements, called synkinesis, can begin.
Retraining for Synkinesis
Synkinesis is uncoordinated, unsynchronized facial movements that occur
during normal movements. It is not uncommon as facial paralysis recovers. For
example, the eye might close or twitch
while smiling; during eye closure the corner of the mouth may pull up or to the
side, etc. Synkinesis is thought to result
from abnormal nerve regeneration during
the healing process, where some nerve
fibers attach to muscles other than those
originally inhabited. As the brain sends
the signal through the nerve, the wrong
muscles activate, producing movement in
a different area than intended.
The facial skin is like a flexible fabric
that can move in many directions depending on which muscles are flexing.
Muscles pulling in opposite directions
distort the facial expression. The face may
still seem “paralyzed” even though obvious movement is seen where, after surgery, there was none.
The difference between a lack of muscle
contraction resulting in no movement
(flaccid paralysis) and wrong muscle con-
tractions resulting in restricted, distorted
movement (synkinesis) necessitates significantly different treatment strategies.
The facial muscles main job is to
move the facial skin. They don't move
bones around joints or lift heavy objects.
They don’t need a great deal of strength,
but they do need precise coordination.
As different combinations of the 23 pairs
of facial muscles contract, the skin
moves in a wide variety of patterns.
Over 2,000 different facial expressions have been catalogued. Identifying
the muscles that should and should
NOT be contracting requires a skilled
therapist. Synkinesis is not well known
to the medical community because it
does not occur in other parts of the
body. Physical and occupational therapy
schools provide no specialized training
in facial muscle anatomy, physiology or
specific facial retraining techniques. It’s
critical to work with a therapist welltrained in the facial neuromuscular system.
Retraining sessions devote considerable
time to education of facial anatomy and
muscle actions. Being able to accurately
identify which muscles are contracting
normally vs. which are contracting synkinetically is crucial for successful retraining.
Knowing, for example, that the smile
muscles are located in the cheek and not
the mouth is important for learning
which muscle to activate for improving
the smile. However, the answer to the riddle of reducing synkinesis is learning what
NOT to move as much as what should
move. Keeping the synkinetic area “quiet”
allows the correct muscle to move without
restriction, like it does on the unaffected
side. The process is like learning to rub the
head and pat the belly at the same time. It
is not easy, but it is worth the effort.
Sessions focus on small, coordinated
movement patterns which are modified as
progress is achieved. Normal facial movements are small and subtle so “exercise”
movements are also small and subtle. In
normal life a mirror is not used to produce expressions so a mirror is rarely used
in retraining. Instead, the unaffected side
is used as a reference for how the movement should feel. Maximum effort movements are not functional and reinforce
synkinesis so have no role in retraining.
See Medical, page 9
Medical
As in any other learning program, motivation and commitment to daily practice improves skills and outcomes. The
newly learned patterns become more automatic with repetition over time.
With synkinesis, as with
flaccid paralysis, electrical
stimulation should not be
used. It can stimulate already
overactive and uncoordinated
muscle movements further
reinforcing abnormal patterns.
There is no time limit for retraining
synkinesis because treatment focuses on
coordinating already viable muscles. Where
there is synkinesis, there is movement, even
if it is not well synchronized. Even years
later, it is possible to relearn more normal
movement patterns and expression.
Approximately 90% of the retraining
program is carried out by the individual
at home over an 18 month to 3 year time
period. Clinic visits can be kept to a minimum helping to keep program costs low.
Neuromuscular retraining provides
excellent continuity of care after acoustic
neuroma surgery, specifically addressing
one of the most important issues identified by people who have had surgery.
Through knowledge and training it empowers people to assume more control
over their own recovery. Neuromuscular
retraining cannot completely restore normal facial movement and expression after
facial nerve injury. However, it assists
people to achieve significant functional
improvements, increased self-esteem, satisfaction and quality of life.
Editor’s Note: For more information about
facial reanimation, refer to our patient
information booklet “Facial Nerve and
Acoustic Neuroma — Possible Damage and
Rehabilitation” and Ms. Diels’ November
2013 webinar on “Non-surgical Neuromuscular Retraining for Facial Paralysis after
Acoustic Neuroma Surgery.” Both the booklet and the webinar can be viewed on our
website in the Member Section.
ANA N EWS
ANA Endowed Fund
B Y J EFFREY D. B ARR
Immediate Past Board President
The ANA Board of Directors approved
an important proposal in 2012 to create a
legacy for the future of the organization,
establishing an ANA Endowed Fund.
Policies were then established, and the actual fund was created in 2014 with an initial investment of $150,000.
Our vision is that the fund will grow
over time with additional gifts from multiple donors and investment growth within the fund.
A growing endowment creates an ongoing source of income, with the permanent endowment invested in a pool of
money that provides a reliable source of
income in perpetuity. It provides long-
term stability, fiscal responsibility and financial viability. It also allows for program expansion which can be funded
with distributions from the fund as permitted by fund policies.
Your investment in ANA’s endowment
fund perpetuates your values and priorities for the organization and creates a
sense of immortality. This significant investment in the future of ANA is invaluable to the organization long term.
We’re excited with our Endowed Fund.
While it may be small now, we hope to see
it grow over the years. And, it dovetails
nicely with ANA’s new Acoustic Neuroma
Legacy Society, where we hope patients
may leave a bequest to ANA in their will.
History shows us this can be a substantial source of funds to ANA, complementing membership fees which only
cover about 30% of our costs.
a percentage of your estate to go to ANA.
You can always modify this amount or
designation should your circumstances
change.
Here is sample bequest language you
can take to your attorney:
The Acoustic Neuroma Legacy Society was
I, (name), of (city, state, ZIP), give,
introduced in 2013 as a way to recognize
devise and bequeath to the Acoustic Neurodonors who have made a bequest to ANA. ma Association, Federal Identification
Members of the Legacy Society have
Number 23-2170836, a 501(c)(3) taxnamed ANA in their estate plans, ensuring exempt organization, whose national office
support will be here for AN patients well
address is at 600 Peachtree Parkway, Suite
into the future.
108, Cumming, GA 30041, the sum of
Previous bequests have allowed us to
$_____, or percentage of (written amount
introduce new programs such as our Webi- or percentage of the estate or description of
nar series and social media
property) for its unrestricted
sites. Estate gifts have also
use and purpose.
Acoustic Neuroma Legacy
allowed us to develop and
When you remember the
Society Founding Members
maintain one of the most
Acoustic Neuroma Associa■ Jeffrey D. Barr
comprehensive AN webtion through a gift in your
■ Ginny Fickel Ehr
sites in the world.
will, you become part of a
■ Jill R. Frederick
ANA is grateful to all
group of instrumental givers
■ Alan & Lauren Goldberg
members of the Legacy
whose generosity has made
■ Freida Kletnick
Society for their generous
possible some of our most
■ Miriam B. &
gift, our hope is that othinnovative and effective proJoseph B. Klein
ers will follow in the footgrams. Join the Acoustic
■ Wanda D. Price
steps of these generous
Neuroma Legacy Society to■ Marilyn Rose
donors and leave their
day by contacting:
■ Kimberly J. &
own legacy with ANA.
Judy B. Vitucci
Wayne A. Simington
To make a bequest in
[email protected]
■ Scott Van Ells
your will, you can specify
1-877-200-8211.
■ John L. Zipprich II
either a fixed amount or
9
2014 LOCAL SUPPORT GROUP MEETING RECAP
ILLINOIS, Southwest Chicago
Ginelle Sanchez, 773-209-8375,
[email protected]
03/09 Vestibular Rehabilitation &
Coping Strategies for Balance
Issues & Dizziness; Caring &
Sharing
INDIANA, Indianapolis
Deb Walls, 317-988-1435,
[email protected]
07/19 SoundBite Hearing Device
– Information & Demonstration;
Caring & Sharing
MASSACHUSETTS, Boston
Nancy Marjollet, 781-248-3924,
[email protected]
Caring & Sharing
10/19 Hearing Device Options for
Single-Sided Deafness (SSD),
Information & Demonstration
(Baha Hearing Device; Phonak
CROS/BiCROS System;
SoundBite Hearing Device)
MARYLAND, Baltimore – New
Kathy Tyeryar, 240-446-6916,
[email protected]
03/08 Latest Developments in the
Treatment of Acoustic
Neuromas; Caring & Sharing
Management and Outcomes:
What We Have Learned;
Caring & Sharing
MICHIGAN, West Bloomfield
MISSOURI, St. Louis
Schatzi Clark
(stepped down October 2014)
Agnes Garino, 314-821-1905,
[email protected]
Phyllis Trulock, 314-822-3221,
[email protected]
02/15 Balance Issues &
Rehabilitation Strategies for
Acoustic Neuroma Patients;
Caring & Sharing
Caring & Sharing
09/27 Hearing Device Options
For Single-Sided Deafness
(CROS, Baha, TransEar,
SoundBite); Caring & Sharing
11/22 ANA Educational Webinar
Recording and Discussion –
Dealing with the New Normal;
Caring & Sharing
NEW HAMPSHIRE/
VERMONT – New
Linda Grant, 603-679-1204,
[email protected]
Treatment Options; Meet &
Greet; Caring & Sharing
10/05 My Acoustic Neuroma
Story; Caring & Sharing
NEW JERSEY
Wilma Ruskin, 609-799-4442,
[email protected]
Dave Belonger, 609-654-8141,
[email protected]
04/06 Spring Meeting; Meet &
10/26 Mini-Conference – Acoustic
Neuroma 2014: Issues and
Research
Gail Beale
Jim Notarnicola
Ken Posner, 248-464-0808,
[email protected]
Caring and Sharing
10/25 Meet & Greet;
Caring & Sharing
NEW JERSEY SOUTH
MINNESOTA,
Minneapolis-St. Paul
NEW YORK, Albany/Mid-Hudson
Terrill James
Steve Blons, 612-925-5926,
[email protected]
05/10 Radiation Treatment for
Acoustic Neuroma: How it
Works and What to Expect;
Caring & Sharing
10/25 Facial Nerve &
Rehabilitation Options;
Caring & Sharing
MISSOURI, Kansas City – New
Dave Kellogg, 913-345-1727,
[email protected]
01/18 Meet & Greet;
Caring & Sharing
Hearing Device System –
Information & Demonstration;
Caring & Sharing
10/18 SoundBite Hearing Device –
Caring & Sharing
Tim & Karen Reid, 732-341-6002,
[email protected]
Victor Mankoski, 908-456-2460,
[email protected]
Caring & Sharing
09/20 Baha Hearing Device –
Caring & Sharing
John Gigliello, 518-862-1602,
[email protected]
Tracey Collins, 581-382-3283,
[email protected]
06/21 Microsurgery Treatment
Option for Acoustic Neuroma
Patients; Caring & Sharing
Networking
NEW YORK,
Long Island – Recruiting
Daria Quinones, 631-219-0397,
[email protected]
12/06 Tinnitus and Hearing
Devices
NEW YORK, New York City
Lauren Goldberg, 917-547-0572,
[email protected]
Miranda Warren Sacharin,
646-964-4679,
[email protected]
01/25 Educating Patients to be
Their Own Advocates in Healthcare
Safety; Caring & Sharing
03/08 The Latest in Hearing Aids
and the Importance of the T-coil
to Access Assistive Listening
Systems & Devices; Caring &
Sharing; The Yale University
Caring & Sharing;
Neuroma Study
Hearing Device System Information & Demonstration
06/22 Informal Brunch;
Caring & Sharing
09/13 Post Treatment Issues – a
Multi-Disciplinary Approach to
Navigating your Post Treatment
AN Journey; Caring & Sharing;
Neuroma Study
11/15 Symptom Management &
Acoustic Neuroma; Caring &
Sharing; The Yale University
12/06 Role of Neurotologist;
Caring & Sharing;
Neuroma Study
NEW YORK, Syracuse/Rochester
Greg Ewing, 315-637-7002,
[email protected]
Ceci McCurdy, 585-249-4887,
[email protected]
06/07 Caring & Sharing;
Neuroma Study
09/06 Caring & Sharing;
Neuroma Study
12/13 The Many Virtues of
Acupuncture; Caring & Sharing
NORTH CAROLINA, Eastern
Stewart Binder, 919-624-3256,
[email protected]
Debbie Fletcher, 919-471-4389,
[email protected]
Robert Hamer, 919-593-1648,
[email protected]
01/25 Balance Issues Associated
with Acoustic Neuroma;
Caring & Sharing
Treatment Options: Expected
Outcomes & Post-Treatment
Issues to Consider When Making
a Decision; Caring & Sharing
Acoustic Neuroma Study; Caring
& Sharing
10/25 Hearing Device Options;
Neuroma Study
OHIO, Dayton/Cincinnati
Alice Wedding, 513-831-0336,
[email protected]
04/26 Radiation Treatment
Options for Acoustic Neuroma
Patients; Caring & Sharing
11/08 Auditory Brainstem
Implants; Hearing Loss
Rehabilitation Options;
Caring & Sharing
Recruitment
If there is not a support group in your area or you live in an area where we are
recruiting for a leader, consider starting one! Contact ANA for more information.
10
09/06 Eye Care after Acoustic
Neuroma Surgery; ANA 2013
Symposium Workshop Audio
Presentation-Surgical
Management of Paralyzed
Eyelids; The Yale University
Story; Caring & Sharing
OHIO, Northeast
Pat Gillespie, 330-456-6006,
[email protected]
Tom Moore, 440-454-3282,
[email protected]
05/10 Facial Nerve Preservation
Strategies During AN Surgery
Caring & Sharing
TEXAS, Houston
OREGON, Central
Karen Forte, 541-388-0095,
[email protected]
Acoustic Neuroma Study; Meet &
OREGON, Portland – Recruiting
Hillary Frie, 503-992-7587,
[email protected]
Steve Gerrard, 503-780-7391,
[email protected]
09/06 Occupational Challenges
as a Result of Acoustic Neuroma;
Caring & Sharing
PENNSYLVANIA, Philadelphia
Thomas Smith, 610-532-9531,
[email protected]
04/12 Latest Developments in the
Treatment of Acoustic
Neuromas; Caring & Sharing
10/18 Hearing Loss 101;
Caring & Sharing
PENNSYLVANIA,
Pittsburgh/Tri-State
PENNSYLVANIA, Reading
Nancy Graffius, 610-939-9114,
[email protected]
Caring & Sharing
Caring & Sharing
SOUTH CAROLINA, Columbia
Wayne Marsh (stepped down
September 2014)
Sandra Lail, 843-884-9598,
[email protected]
Caring & Sharing
Priscilla Riedel-Cohan
Jay Ball
& Sharing
VIRGINIA, Richmond – New
Darry Patterson,
[email protected]
09/20 Meet & Greet;
Caring & Sharing
Mark Imhof, 540-761-9901,
[email protected]
Johnny Diaz, 434-525-6940,
[email protected]
Acoustic Neuroma Study; Caring,
Sharing & Networking
– Information and
Demonstration;
Caring, Sharing and Networking
Dealing with the New Normal
WASHINGTON, Seattle
Barbara Shinn, 425-771-2105,
[email protected]
& Sharing
– Information and
Demonstration; Caring and
Sharing; Summer Picnic
WISCONSIN, Green Bay
TENNESSEE, Knoxville
Jack Martin
(stepped down July 2014)
Tammy Hart, 865-309-2378,
[email protected]
05/03 Balance Issues & Vestibular
Rehabilitation for Acoustic
Neuroma Patients; Caring &
Sharing
10/11 Meet & Greet;
Caring & Sharing
Linda Dorasami, 817-244-0615,
[email protected]
Bob Clyatt, 972-542-9730,
[email protected]
Caring & Sharing
TEXAS, San Antonio – Recruiting
VIRGINIA, Roanoke
Joe Vargo, 814-242-1662,
[email protected]
04/05 Facial Issues &
Rehabilitation for Acoustic
Neuroma Patients;
Caring & Sharing
Acoustic Neuroma Study; Caring,
Sharing & Encouragement for
Caregivers
TEXAS, Dallas
Pete Meaden, 832-689-8957,
[email protected]
& Sharing
Story; The Yale University
Caring & Sharing
Bonnie Simon, 920-731-4647,
[email protected]
Audrey Laskowski, 920-822-5635
05/17 Meet & Greet;
Caring & Sharing
11/15 Hearing Loss & Hearing
Device Options;
Caring & Sharing
WISCONSIN,
Milwaukee – Recruiting
Scott Van Ells
and Sharing
Dealing with the New Normal;
Neuroma Study
ANA Contributors: July–September 2014. Thank You!
ANArchAngel
($5,000 and
above):
The TJX
Foundation, Inc.
ANA Donors
($100–$249):
Jackie Berger
Leslie Tolliver
Ruth Berkelman
Benjamin Blum
Grand Benefactors
Gaylia Boerner
($1,000–$2,499):
Barbara Breakstone
Elfriede Hutchins
Don Burton
Cathy & Don
Arthur Callistein
Stechschulte,
Barbara Campbell
The Donald W. & Douglas Casserly
Dorothe P.
Steven W.
Stechschulte Fund
Cheung, MD
of The Pittsburgh Sharon Cole
Foundation
Karen Coleman
Philip Stieg, MD
John F. Craemer
John Zipprich, II
Diane Dalman
Christopher J.
ANA Benefactors
Danner, MD
($500–$999):
Susan Davis
Jeffrey D. Barr
Mary Jo Driver
Yollanda Cheung
Gary Dudley
A. Sandra Churgin/ Howard Fagerberg
RBC Trust
Janet Fitzgerald
Christopher Forbes
Company
Samuel
Helena Lesher
Gubbels, MD
Philip H. Gutin, MD
ANA Patrons
Arlene Friedman
($250–$499):
Tom Gabriel
Gary Bell
Paul Gidley, MD
BNY Mellon
Leona Gleason
Community
Lynne Goodman
Partnership
Sheila Grimm
for Martha &
Alexander Huberts Jane Gross
Tammy Haddock
Derald
Dina Haines
Brackmann, MD
Helen De Augustinis Amy Hironaka
Connie Heacox
Kenneth Dietterich
Catherine Heath
Pamela Dunn
Pauline Heil
Jill Frederick
Mary Hopkins
Martha Gross
Roger & Linda
David Heisel, DDS
Howard
John Keyes, Jr.
Eugene Howerdd, Jr.
William Litchfield
Gale Jackson
Betsy Poer
Marc Schwartz, MD Karen Jackson
Ronald Targan
Marianne Karels
Malcolm Taw, MD
Joan Jeffri Keller
David Kraushaar
Marlene Krutter
Doris Kunkel
Kenneth Lahr
Judy Lindstrom
James Mack
Tori Marshall
Laura Mastrangelo
Stuart Mayer
Darrell McAnulty
Mike McCurtain
John McElveen
Max B. Medary, MD
Robin Data Medina
Tom & Rose Mary
Meyer
Antonella Gelosia
Mark Germann
David Goldberg
Michael Green
Nina Gross
Karen Hawkins
Carol Helmstadter
Mary Hower
Keri Jacobs
Holly Jacquard
Karen Johnson
ANA Friends
Mark Johnson
($50–$99):
Hela Kelsch
Peggy Alexander
Michael Kerlan
Jack Kreidler
Janet Legler
ANA Membership Benefits
Susan Lewis
Rev. Roy Lidbom
Quarterly newsletter
Paula Liddiard
Patient information booklets
Grace Lovell
Webinars
Jerry Macher
Local support group network
Irene Mackler
Website Member Section
Joy Madden
Charlotte McClain
Website with Discussion Forum at
Kenneth Meyd
www.ANAUSA.org
Milagros Miranda
Yaron Moshel, MD
Marianne Baillos
Kathleen Nevin
Herman Mullejans
Donna Barbara
Glenavie Norton
Katherine Newton
Bill Barboni
Mitch Orlik
John O’Donnell
Sandra Bates
Roger Owen
Ethel O’Lsho
Sidney Bresler
Kay Phinney
Judy Peters
Gail Cassas
Cathy Pokorny
Roy Poage
Roseanne
Carrie Pollack
Diana Purdy
Chichester
Sharon Reiswig
Mark Racowsky
Rev. George & Merle Priscilla
Charles Russell
Chorba
Riedel-Cohan
John Roberts
John Chuha
Marlene Rosen
Marian Rollings
Gaye Cronin,
Marlene Rosenberg
Josie Russo
OTD, OTR
Dick Soukup
John Ruzich
Barbara Cohen
Margaret Stemmler
Bret Saathoff
Jim Craig
Mary Anne
Benjamin Sackmary Mary Ann Creigh
Tarquinio
Ravi N. Samy, MD
Janel Davis
Nancy Thelander
Carl Schimel
David Dearing
Benjamin Wald
Greg Schlosberg
Sergio DeOrnelas
W.L. Toothaker, MD
Julia Schoettle
Gloria
Blanche Weir
John Schuchman
Dipietro-Cooper
Ken Yoo
Lynda S. Scott
Everett Donegan
Mark Weymouth
Mike Seay
Mary English
Carol Wiens
Elise Silverman
Dennis Feinstein
Ronald Wilk
Jane F. Simonds
David Fields
Richard Wondra
Debbie Lee Gaskin
2014 ANAwareness
Sponsors
Pamela Simonsen
David Sims
Joel Solomon
Carol Stanley
Henry Stevens, PhD
Jane Barnes Tapp
John Thomason
Carol Torrens
Walden Westlake
Constance Wood
Jennifer McAndrew,
RN, BSN
James Yasik
In Honor Of:
Sallye Anderson
By Susan K.
Anderson &
Rosalin Anderson
Derald
Brackmann, MD
By John
Zipprich, II
Alan & Lauren
Goldberg
By Joel Solomon
Aimee Nabavi
By Gaye Cronin,
OTD, OTR
Gwynne Sasileo
By Katie Wills
Toby & Shari
Steivang
By Karla & Brent
Tildahl
In Memory Of:
Jane Budd
By The Assistance
League of
Sacramento
By “The Four
Musketeers,”
Carol & Paul
Spiker
By “The Lunch
Bunch,” Mary
Jo Driver
By Gail Jenkins
By Oscar & Laura
Mix
By Deborah
Owyang
By Francean Rible
By Mary Anne
Sessarego
By Southport
Elementary
School Staff
By Waldon
Westlake
Herzlina Gerasi,
Beloved Mother
Scott Gibbons,
Beloved Son,
Brother, Husband
& Father
John D. Hayes, Jr.,
Beloved Brother
Sanford Mosko,
Beloved Brother
Michael St. Onge,
Beloved Brother
By Arlene & Jack
Friedman
William
Hitselberger, MD
By John
Zipprich, II
Eileen Rosenthal,
My mother
By Marlene Rosen
Helen Schneider
By Robin Ray
Gift Memberships:
Julie Greek
By Dr. John R.E.
Dickins/Dr.
Edward Gardner
Matched Gifts:
BNY Mellon
Community
Partnership
For Martha &
Alexander Huberts
Direct Edge
For Elise
Silverman
Highmark Matching
Funds
For Gale Jackson
SYMPOSIUM
FINANCIAL
ASSISTANCE:
James B. O’Connor
Memorial Fund:
Cathy & Don
Stechschulte
Thanks and Appreciation
For all that you do for AN patients!
All Support Group Leaders,
Co-Leaders/Facilitators
ANA Discussion Forum Moderators
ANA “Willing To Talk” program participants
The Meehan Family Gift Fund
■ Jackie Diels Facial Retraining
■ Steven & Jennifer Korman
■ Miles & Stockbridge
Foundation, Inc.
■ Accuray CyberKnife
■
11
NON-PROFIT
ORG.
U.S. POSTAGE
PAID
Permit No. 797
ATLANTA, GA
600 Peachtree Parkway
Suite #108
Cumming, GA 30041
www.ANAUSA.org
ADDRESS SERVICE REQUESTED
More than 33 years of providing
information and support for
Acoustic Neuroma (Vestibular
Schwannoma) patients.
M EMBERSHIP /D ONATION F ORM
1
My Information
2
Name
Address
City
(
State
Zip
)
Phone
E-Mail (required to access “Member Section” at ANA website)
Pre-treatment Patient
Watch-and-Wait Patient
Medical Professional
3
Post-treatment Patient
Family Member or Other
My Payment
Enclosed is my CHECK for $
Or,
Please charge my CREDIT CARD for $
MasterCard VISA
Exp. Date (required)
12/14
My Support of ANA
ANNUAL MEMBERSHIP DUES
1-Year United States
$45
2-Year United States
$80
International
$70
Allied Health Care Professional
$85
Medical Professional
$160
Affiliate : $200 Commercial $100 Non-Profit
DONATION
ANArchAngel
$5,000 and Above $______________
ANAngel
$2,500–$4,999 $______________
Grand Benefactor
$1,000–$2,499 $______________
Benefactor
$500–$999 $______________
ANA Patron
$250–$499 $______________
ANA Donor
$100–$249 $______________
ANA Friend
$50–$99 $______________
Other ___________________________ $______________
Total $______________
4
My Special Gift Information
MATCHING GIFT My employer may match my donation.
(If possible, please enclose your employer’s matching gift form.)
Account #
Company Name __________________________________________
Name as it appears on card
TRIBUTE GIFT This donation is in Honor of Memory of
_________________________________________________________
Signature
I wish this gift to remain anonymous.
You can donate on our secure website at www.ANAUSA.org.
All donations are tax deductible to the extent of the law.
Donations in excess of the amount of your Annual Membership
Dues will be acknowledged by letter. Donations of $50 and
more will be recognized in our quarterly newsletter, Notes.
Please notify (Name) ______________________________________
Address _________________________________________________
City _____________________________ State ____ Zip___________
PLANNED GIVING
I have named ANA in my will or other estate plans.
Please contact me about a gift to ANA.
I would like more information about including ANA in my will.
Please make your check payable to and send to
Acoustic Neuroma Association • 600 Peachtree Parkway, Suite #108 • Cumming, GA 30041
12

December 2014 ANA Newsletter - Acoustic Neuroma Association

Transcription

Similar documents

WA1a-12

to open - Musicoz

Fiter: Greedy Bloggers for a Picky Audience Avner May, Augustin

Morton`s Neuroma - Floyd Memorial Hospital

Chitarre Acustiche d`Italia

Blower Package Pressure and Vacuum

Resodyn Corporation - Dave Desch, Larry Farrar Partners in Progress

The New Concert Hall in Stavanger