One Friday afternoon in January, after a week battling strep throat and the first ear infection of my adult life, my mouth and lips started to feel a little dry. Lip balm didn't seem to help.
That evening, I noticed that I was having difficulty blinking my right eye. It was as if the eye didn't close completely.
By noon Saturday, a larger group of mysterious symptoms had set in, including difficulty controlling the right side of my mouth for such mundane tasks as eating, drinking and spitting out toothpaste. Food and drink literally dropped out of my mouth if not carefully inserted into the left side. My mouth and right eye drooped noticeably, giving me a look that was part sad clown, part basset hound.
My mom, who was visiting at the time, hazarded a guess: Bell's palsy. My dad had had it 30 years ago, so she had seen the symptoms before.
We looked up the condition in the family medical guide published by the American Medical Association (AMA). The description fit my closely experience: weakness and droopiness on one side of the face, difficulty closing one eye, sudden onset of symptoms.
Our amateur diagnosis was confirmed by an otolaryngologist, Ednan Mushtaq, the following Monday. In his McLean office, Mushtaq explained that he planned to treat the palsy with a heavy dose of prednisone, a steroid, and, although I hadn't experienced telltale cold sores, an anti-herpetic medication called Valtrex.
"The paralysis could take a month to a year to go away," he said gently.
I burst into tears.
A Diagnosis by Exclusion
It was only by chance that I received my diagnosis from an ear-nose-throat specialist. Although ENTs are typically the most knowledgeable and experienced at treating Bell's palsy, most people with facial paralysis go first to their general practitioner or even to the emergency room (fearing a stroke). I was diagnosed and treated quickly because I had already been seeing Mushtaq for the ear infection.
Even so, he doubts that the infection bore a direct causal relationship. Bell's palsy is, by definition, idiopathic: cause unknown. However, the AMA guide does state, "A middle ear infection or a sore throat sometimes seems to occur with it."
The facial paralysis of Bell's palsy -- or, in my case, paresis, meaning partial paralysis -- results from an injury to the seventh cranial nerve. This nerve originates in the brain stem; it eventually branches into 7,000 tiny nerve fibers that pass through a small opening in the skull called the fallopian canal, located just behind the ear. From there the nerve spreads into the face, neck, salivary glands and outer ear. When that nerve becomes inflamed, the swelling causes it to become pinched in the fallopian canal's tunnel.
The seventh cranial nerve controls a range of functions, including blinking, salivation, taste and expression. The degree and location of the nerve injury dictate the number and severity of symptoms of Bell's palsy, which can also include a stuffy or runny nose, hypersensitivity to sound, diminished or distorted taste and drooling. The face can swell or droop and an affected eye can appear smaller.
Todd Henkelmann is a physical therapist at the University of Pittsburgh Medical Center Facial Nerve Center; he has specialized in facial paralysis since 1992. He notes that identifying Bell's palsy is a diagnosis of exclusion:
"Many doctors see facial paralysis, often in the emergency room, and immediately rule out stroke," he said. "After that, they make an assumption of Bell's palsy. However, there are at least 100 known causes of facial paralysis, so patients should have tests done to rule out other causes." Some of these other causes include brain tumor; Ramsey-Hunt syndrome, which closely mimics Bell's palsy; and Lyme disease.
Mushtaq agrees, and notes that a complete medical history enables a more accurate diagnosis. For instance, there is a rare familial syndrome of facial paralysis that can be ruled out, as well as other types of injury such as a temporal bone fracture. Prompt diagnosis and treatment can improve the chances of a full recovery. For those with complete facial paralysis, a test called an ENoG (electroneuronography) can measure the amount of degeneration in the nerve and can be a fair predictor of recovery -- if administered within three to 21 days of onset.
Like many in my wired generation, I came straight home from the doctor's office and got on the Web to find out more. "Patients' most common concern is, 'Is there something that can be done that my doctor is not doing?' " says Henkelmann. (He also notes that many doctors think no treatment is necessary for Bell's palsy; benefits from steroids and anti-herpetics have not been proven conclusively.)
I found lots of good information that was easy to understand on the Bell's Palsy Information Site (www.bellspalsy.ws). There I learned that only 40,000 Americans develop the condition each year. (However, virtually everyone I've mentioned it to seems to know someone who's had it.) I also learned that it affects men and women equally, and seems to have little correlation with race or age. A further comforting fact was that symptoms tend to peak within 48 hours of onset -- I didn't have to worry about the paralysis becoming progressively worse. The condition is named for a Scottish physician, Sir Charles Bell, who studied the nerve two centuries ago.
Then I investigated a couple of the discussion forums. Big mistake. It seemed that participants were primarily long-time, chronic sufferers of Bell's palsy, many of whom had been dealing not only with paralysis but also with pain, often for months or longer. Their stories scared the hell out of me. One forum member wrote, "One consequence of not being able to raise an eyebrow is that no wrinkles form on that side of the forehead. So as I grow older I have a younger side of my face and an older side!" Egad.
I sank into a depression, canceling appointments and social engagements, avoiding all contact with the outside world. My speech was affected; the "sp" sound, as in "speech," was one of the most difficult to form. When I tried to smile, only the left side of my face responded, resulting in a grotesque half-expression that reminded me of a drama mask. One evening's dinner of black beans and rice left me fishing the grains of rice out from between my right cheek and gum, where they had gotten stuck due to my inability to really chew on that side.
I began to worry that the paralysis would last for months -- that I would scare my 5-year-old son and that my husband wouldn't want to be married to a disfigured woman. That lasted for about three days, but eventually reality set in: My son hadn't said a thing, except to ask if he could use some of my new multicolored bendy straws, and of course my husband loves me no matter what.
But the mental aspect of Bell's palsy isn't to be taken lightly.
"The psychological effect is huge," Henkelmann says. "Our faces are critical to our identity, to the way we see the world. We live in a society in which appearance is important. Facial paralysis patients can become self-conscious, depressed and withdrawn." He has some patients whose chronic palsy has resulted in job loss and divorce.
The Bell's Palsy Information Site advises, "Friends, family and doctors often have no true concept of how deeply the patient's sense of self and self-esteem are affected. . . . They have little or no understanding of your physical discomfort, difficulty and frustration as you struggle to do seemingly simple things that they take for granted."
Boy, I'll say. Who ever knew spitting out toothpaste could be so hard?
One thing that helped was to adjust my thinking: to realize that the palsy was the result of an injury, a one-time event as opposed to a disease. As with any injury, the body needs time to heal. My mental state improved as I gave myself permission to rest more, to close my eyes when they felt dry after a couple of hours at the computer and to push back some pressing deadlines. I was proactive about telling the few people I did see -- so they would know, as my husband suggested, that I was not scowling at them. (However, the fabulous magical weight loss I had envisioned as a result of my soft-foods diet did not materialize. Gave myself too much permission with regard to ice cream, I suspect.)
Best Face Forward
I've been one of the lucky ones. Despite my pessimistic fears, nearly all of the paresis is gone as I write this, about three weeks after onset.
My smile is still a bit uneven, but the eye problems are completely gone. If it had lasted longer, Mushtaq likely would have sent me for more tests, including the ENoG and possibly an MRI scan. Those would have served to predict my degree of recovery and to rule out any other mitigating factors, such as a brain tumor. Even so, there probably would be little or no further treatment.
Bell's palsy is a waiting game. No one knows how long it will last or what really works. Some patients improve after trying acupuncture, biofeedback or other alternative treatments. However, it's unknown whether they would have recovered just as fast without those efforts. No conclusive studies have been done.
A crucial aspect of treatment is proper eye care. The inability to close the eye completely varies widely among patients. Mushtaq notes that maintaining proper lubrication is critical; excessive drying of the eye can cause exposure keratitis, an inflammation of the top layer of the eye. He recommends using a combination of lubricating ointment and artificial tears; those with the greatest difficulty blinking should tape their eyes closed at night. Contact lens wearers will probably have to discontinue their use. During the day, patients are encouraged to "blink manually" by pressing the eyelid closed with the back of a finger.
For all Bell's palsy sufferers, the odds are in our favor. Seventy to 75 percent make full to good recoveries within three months, another 10 percent within a year. Diabetics in particular should be aware of the symptoms, as they are four times more likely to develop Bell's palsy than the general population. Fortunately, the incidence of recurrence is small -- about 8 percent. People whose symptoms last longer than three months are likely to have more residual effects, including synkinesis (uncoordinated or unsynchronized facial movements), eye problems and nasal problems. Treatment can include physical therapy, facial retraining, the insertion of eyelid weights, botox injections and even surgery. Ten to 15 percent of patients suffer some degree of permanent facial paralysis.
Cicero wrote, "The face is the image of the soul." It's hard to know, until it happens to you, how you'll feel when that image becomes distorted. My course has been relatively easy, but I have learned that, while Bell's can affect how the world sees you, it doesn't have to change how you see the world.
Jennifer J. Salopek is a Washington area freelance writer.