Personal Stories

One of the best ways to understand why something is important is to see first-hand how it impacts another person—for better or worse. At the Foundation for Facial Recovery, we never lose our focus on why we're here—for the individual afflicted with facial paralysis or TMJD. That's why we thought it was a good idea to share some powerful individual stories of struggle and what the road toward recovery can be like, through the words and images of the people themselves.

Onset - July 2014
Present Day - January 2015

Diane

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.

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 with life.

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 was very helpful to me in providing referral options.

What's clear is how important it is to find the resources, experience and skills to work with acoustic neuroma patients whose surgery resulted in facial paralysis. Ask lots of questions and expect 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.  My therapy team at the Center for Facial Recovery, 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 pretty again?”

Every time I go to therapy I get a 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.)

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.  Sometimes the changes that occur cause other things to happen, like when I try to raise my eyebrows my affected eye shuts. 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!