Mirror, Mirror

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 dhintz@sovhomestead.com.

Time to go do my face exercises!  🙂