By Diane Hintz
I couldn’t look at myself in the mirror. There was a freak looking back at me.
Honestly, I looked weird. My smile was sideways on my face, one eye
wouldn’t blink or shut, there was no movement on the left side of my face. My
husband tells me I didn’t look like a freak, I looked like someone who had a
stroke. I think I looked like a freak.
Last June, I had brain surgery to remove an acoustic neuroma, a tumor that
was undetected for years, despite my expressing concerns to several doctors
about my hearing loss and almost constant “stuffiness” in one ear, along with
tingling sensations in my jaw near that same ear. The first doctor, 20 years
ago, gave me Claritin and a hearing test. There was minimal loss of
hearing…”no big deal,” he said. The next doctor, five years later, wouldn’t see
me; I saw his assistant three times and she kept saying nothing seemed
wrong. By the third visit in three months she appeared close to
recommending me to a psychologist. A few years later my new primary
doctor referred me to one of the best ENTs in the Washington, D.C., area,
according to a local magazine. He shook his head and said nothing could be
done for hearing loss and recommended a hearing aid. Last year I decided to
get a hearing aid since my hearing loss was getting worse and I was starting to
lose my balance. An audiologist sent me for an MRI. Viola, a tumor was found,
a giant 5.5cm tumor no less. Semi-emergency surgery was scheduled, to occur
four days after our only child’s high school graduation, a happy celebratory
event that was marred by my impending surgery.
As a result of the 12-hour surgery to remove the acoustic neuroma, I had facial
palsy on the left side of my face. I was the weakest I’d ever been in my life. I
remember lying in the hospital bed, a day or two after the surgery, thinking
about life. My life was miserable right then but there were things I was
thankful for. I was alive, I didn’t die during surgery. The tumor was benign. I
had health insurance to pay for the surgery. I could recover my strength and
balance by doing physical therapy. And I had my husband and daughter who
were taking incredible care of me, bringing me fresh, delicious soft food that
my daughter lovingly prepared and sitting by my side for hours just to be with
me. They exuded love, helping to give me strength.
The first month after surgery I mostly sat in a chair by the window and my
husband and daughter gave me soft food to eat, they put drops and ointment
in my eye, they gave me the medicine I needed several times a day. They never
complained, they always did whatever I asked of them and I needed their help
for almost everything. I couldn’t walk up the five stairs to the kitchen to
prepare a simple meal; I was so weak. Neighbors organized a dinner program,
taking turns preparing and delivering us dinner every day for weeks. Co-
workers did my work, never complaining.
The most confusing issue I confronted was my face. No one at the hospital
told me I had facial palsy. They instructed me how to care for my non-
blinking eye and how to sweep food from the numb side of my mouth to the
other side of my mouth. There were no mirrors in the hospital room; I had no
idea what I looked like. After I returned home and saw my reflection in the
mirror I realized something was wrong. I reviewed my discharge papers
which said I had Bells palsy. I read on the internet that Bells palsy usually goes
away in a few weeks. It wasn’t until I saw my surgeon several weeks later that
I learned I had facial palsy, not Bells palsy. He expected my recovery to be
very soon but not necessarily the timeframe I expected with Bells palsy.
My husband set up physical therapy sessions. For weeks, my daughter drove
me and I held onto her arm to walk into the building. The therapist quietly
reminded me how to walk because, although I was 54 years old, I was
shuffling like I was 100 years old. My physical therapist was wonderful;
within two months I regained strength and balance. But my face hadn’t
changed, I still looked like a freak. The physical therapist would massage my
face but beyond that she didn’t know how to help me.
For the first month after surgery I didn’t go anywhere except to physical
therapy because I looked so weird. I put myself in social isolation. I soon
realized that my face wasn’t going to recover quickly so I better just deal with
it and move on with my life. I’d go to the grocery store and everyone (yes,
everyone) stared at me, wondering what was wrong. People I didn’t know
stopped me and asked me what happened. I drooled when I ate but I went to
restaurants and dabbed my mouth constantly, resulting in a lovely red patch
on my chin. My family and friends were so kind. Never did they appear
embarrassed by my appearance, including when my husband and I attended
parents weekend at our daughter’s college to meet her new sorority sisters.
Everyone accepted me as I was. My family and friends would dab my mouth
to get rid of the food that stuck to my lips, food I couldn’t feel. They would dab
an artificial tear that would run down my face, a tear I didn’t know was there.
Love was all around me and it gave me strength and the desire to continue on
My husband did Google searches about acoustic neuromas and discovered the
Acoustic Neuroma Association. He purchased booklets from them which gave
us more information about facial palsy. In one of the booklets I learned that
facial palsy can take up to 18 months for full recovery and some people never
recover from facial palsy. I also learned there are facial recovery physical
therapists that could help me. The president of the local chapter of the
Acoustic Neuroma Association immediately responded to my request for the
name of an excellent local therapist, telling me about Jodi and Gincy at the
Facial Recovery Center. I emailed Jodi, asking if two months after surgery was
too soon for facial therapy (there are a lot of mixed messages on the internet
about when to start facial therapy after an acoustic neuroma removal). She
responded that it’s never too early to begin therapy. I made an appointment
and began bimonthly sessions. My husband drove me, taking half a day off
work for each visit because I couldn’t drive myself yet.
I can’t tell you how thankful I am to have found Jodi and Gincy. They’re the
only medical specialists I’ve met who have the experience and skills to work
with acoustic neuroma patients whose surgery resulted in facial paralysis.
They have years of experience and have helped me to understand what’s
going on with my face, what to expect during my recovery, and how to recover
from facial palsy. No one else could help me. My doctors were surgeons and
they did a great job removing the acoustic neuroma but they didn’t know what
to do about facial palsy. I’m so thankful for Jodi and Gincy’s years of
experience and knowledge of what works and what doesn’t work. I ask them
lots of questions and they always have an answer.
I started facial therapy about two months after surgery. I massaged my face
every day. I did numerous face exercises all day long. I did exercises in front
of a “mirror book” (a book with mirrors on both inside covers that you align
on your nose so the healthy side of your face is reflected in one mirror and
that image is reflected in the other mirror, thus creating an illusion of a
“normal” face.) I put a special playdough ball in my mouth for hours and read
all my emails out loud (this was an exercise.) I taped kineseo tape on my face
a few days a week. I jokingly yet seriously told my family that my face
exercises were a part-time job. Thankfully, I was able to work from home and
I managed to fit my face rehab exercises into my routine.
A few months went by and nothing happened. My face remained paralyzed. I
started to get discouraged. A facial reconstruction surgeon recommended
surgery if I didn’t start to improve by a certain date. Jodi and Gincy continued
to give me lots of exercises, they massaged my face and they started dry
needling the impaired side of my face. The dry needling gave me bruises on
my face. “Great,” I thought, “now I’m a freak with a black eye. Will I ever look
Every time I go to the Facial Recovery Center, Jodi and Gincy give me different
face exercises. They assess my face and determine what’s going to help me at
that particular time in my recovery. They did more than give me facial
exercises – they recommended that I get an eye weight surgically implanted so
my eye would shut, which helps to protect the cornea. (It also made my eye
look MUCH better, an unexpected benefit.) They recommended using Dr.
Michael Reilly, a facial reconstruction surgeon who’s implanted many eye
weights, a surgeon they know well and continue to work with on my behalf to
determine what will help me look symmetrical. Jodi and Gincy recommended
using an eye chamber at night to keep my eye moist. They truly are experts at
helping people recover from facial palsy.
In addition to going to facial recovery physical therapy every two weeks and
doing my face exercises, I did everything people recommended to me. Two
acquaintances who are doctors recommended taking 50mg of Vitamin B6
twice a day. I did it. Advice on the internet suggested I take Vitamin B
complex and Vitamin D. I did it. My sister-in-law recommended putting
castor oil on my face every day. I did it. Someone recommended hanging my
head over the bed daily to get blood flow to my head. I did it. One day my
husband said, “I believe, from the depths of my soul, that you need to get
blood circulating in your face through physical exercise.” I did it. I was
walking about two miles most days, but it wasn’t strenuous, it wasn’t getting
me out of breath. I started to row at the gym, 20 minutes of using my legs and
arms in tandem each time I went.
It was six months after my operation and my face was still frozen. But two
days after my first rowing session there was the first movement in my face
since my operation. It was like a miracle. It was two weeks before Christmas
and it was the best Christmas present I ever received. Each day for several
weeks there was improvement in my face. My smile wasn’t as lopsided, I could
wrinkle my nose a bit, there was movement in my cheek and I, happily,
It’s been nine months since my surgery. I’m still recovering. My smile is
almost completely normal. My eye can close, albeit with an eye weight to help
it. I can look at myself in the mirror again; I almost look like myself.
Yesterday a neighbor said, “You don’t look like yourself yet but you look like
someone else, someone who’s not bad looking.” I think she’s right.
My face changes almost every day. Weird things happen during recovery from
facial palsy…although my smile is almost normal, saliva involuntarily collects
at the corner of my mouth. I can’t feel it so I dab my mouth continuously. Jodi
and Gincy gave me new exercises to help that particular problem. It’s hard to
explain how helpful they’ve been to me….they’ve encouraged me, they’ve
given me so much advice during the most confusing time of my life.
Sometimes the changes that occur cause other things to happen, like when I
try to raise my eyebrows my affected eye shuts. Gincy and Jodi have seen that
before…they told me what to do to help that problem. When I visit them we
review how my face has changed and the new problems that have arisen and
they give me face exercises to minimize or alleviate the new problems along
with changing some of the exercises for the old problems. I continue to
massage my face every day with castor oil, do the face exercises, take the
vitamins, hang my head over the side of the bed and exercise. Within a few
months I think I’ll be back to normal.
What would I recommend to someone with facial palsy? Number one, see a
facial recovery expert. Words just can’t describe how helpful it is to have
someone who understands what’s happening to your body and can help you
recover. Second, get as much exercise as possible, get the blood flowing to
your face. Take the vitamins. And I hope every facial palsy patient has family,
friends, co-workers and neighbors like mine who have encouraged, loved and
supported me all along the way.
I’m happy to talk with anyone with facial palsy about my experience; you’re
welcome to contact me if you have any questions. Please don’t hesitate to
contact me at firstname.lastname@example.org.
Time to go do my face exercises! 🙂