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Few of us ever experience facial paralysis. Thankfully, many of those who do return to normal within a few weeks or months. A small number, however, never truly recover.
Most of us never worry about the process of smiling or talking. Imagine, however, if the muscles in your face became “re-wired” to work very differently. Think about trying to smile or speak, only to have one of your eyes close instead. Or maybe one side of your mouth can’t hold food in anymore. Then think about how total strangers often make split-second judgments based on our facial appearance.
Renee Hacker of Rockton, Illinois is among a small niche of people to experience severe facial paralysis, but thanks to UW Health’s Facial Nerve Clinic, she enjoys a much higher quality of life today than when her symptoms first surfaced in early 2020.
A few weeks after recovering from a nasty viral infection (probably COVID-19 before it became widely identified), Renee and her husband Jerry drove to Fort Myers Beach, Florida for a monthlong winter vacation.
While sipping a cocktail, Renee suddenly discovered that she couldn’t close her mouth around the straw. Her tongue felt “fat” and her mouth was dry. As the day progressed, her mouth and right side of her face slowly drooped.
“My husband thought I was having a stroke,” Renee says. “We went to a walk-in clinic, and I was grateful that it was not a stroke. They diagnosed me with Bell’s palsy, something I was familiar with from years of working as an assistant in an oral surgeon’s office.”
An unexplained weakness that leads to visible changes on one side of the face, Bell’s palsy occurs as a result of damage to the facial nerve. About 40,000 people in the United States are diagnosed with it each year.
Bell’s palsy not only affects the face’s physical appearance, but also reduces muscle control, taste and tear flow. In Renee’s case, she could not keep chewed food or beverages from falling out of the right side of her mouth. She also became extremely sensitive to noise and suffered persistent headaches.
While she tried to enjoy her time in Florida, each day began with her own pity party.
“I never cussed so much in my life, but once I vented to myself in the morning, I was usually better the rest of the day,” she says.
She hoped it would resolve naturally
Renee also took comfort knowing that 80 to 90 percent of people with Bell’s Palsy completely recover on their own within a few weeks to three months.
Unfortunately, Renee was one of the unlucky few whose case did not resolve on its own. She felt lost and alone, affected just as much emotionally as she was physically. Three months went by before she went online and discovered UW Health’s Facial Nerve Clinic.
It took a few more months before Renee was finally diagnosed with synkinesis, a permanent condition characterized by an unwanted over-correction of the facial nerve in its attempt to recover from Bell’s palsy.
“Renee’s facial nerve came back to life, but not in the normal way it does for most people with Bell’s palsy,” says UW Health plastic & facial reconstructive surgeon Scott Chaiet, MD. “The synkinesis caused her facial nerve to over-recover, which messed up the coordination of Renee’s facial movements. Bell’s palsy also weakened her forehead muscle, causing her eyebrow to droop to the point where it interfered with her ability to drive or read.”
While there are only a smattering of facial nerve clinics across the country who can help patients like Renee, she considered herself lucky to find one less than an hour from her northern Illinois home — the UW Health Facial Nerve Clinic in Madison.
“From my first appointment, I was so impressed with how well coordinated everything was,” Renee says. “It’s a very thorough team-based approach with a surgeon, physical therapist and nurse who sat down together and got to know me and my situation. I didn’t have to repeat my story and describe my symptoms again and again.”
Treatment included surgery, Botox® and physical therapy
UW Health helped Renee find hope. The three major components of her treatment included:
Surgery performed by Dr. Chaiet to lift her eyebrow back to its natural position and remove some excess skin from her upper eyelid that was obstructing her vision;
Periodic Botox® injections given by Dr. Chaiet that help relax Renee’s overactive facial muscles; and
Ongoing physical therapy led by UW Health’s Jodi Janczewski, one of only a few specialist facial nerve therapists in Wisconsin properly trained to help patients with facial nerve abnormalities.
“We are incredibly lucky to have someone like Jodi here because very few therapists have the training to do what she does,” says Dr. Chaiet. “Jodi was trained by Jackie Diels, a true pioneer in the field who is now in private practice after 31 years with UW Health.”
Patients like Renee start physical therapy with two treatment objectives in mind.
“First, we want to train the patient how to return their face to a normal resting state,” Jodi says. “Once we get there, the second goal is to teach Renee how her face has been improperly re-wired so she can learn what she needs to do to make a more normal-looking smile or pucker of her lips. It takes a lot of work both in clinic and at home, and I often tell patients it’s like learning to play a musical instrument. They’re not going to be ready to go out on tour without practice and plenty of time to perfect their skills.”
Improvement in all areas
Jodi takes pictures of her patients at each session, which helps keep people like Renee motivated to do the work. It has paid off cosmetically, functionally and emotionally.
“I will continue with the Botox® injections every 12 weeks,” Renee says. “I’m hoping to stop coming for physical therapy by the end of 2022 and do what I need to do exclusively at home. Jodi says I am on track, which is very encouraging.”
While Renee would never wish her diagnosis on anyone, she has come to terms with it and hopes others who are suffering in silence know there is reason for hope.
“I know there are people out there who are afraid to leave home because of their facial appearance,” Renee says. “They deserve the kind of help I received so they can feel better mentally and physically.”
Renee has learned so much, and not just about the facial muscle exercises that have become part of her everyday routine.
“Strangers may always make split-second judgements based on appearances, but I no longer worry about my asymmetrical face,” Renee says. “I have shared my story on Facebook, complete with all the unflattering photos. If this helps someone else muster up more resilience and courage, that’s a good thing.”
Looking back, Renee is grateful to UW Health not only for her facial improvements but also a more peaceful state of mind.
“This journey boosted my self-confidence, and I now know that real beauty comes from the inside,” Renee says. “The last two years also taught me the value of patience, which I have struggled with my entire life. Now I have no choice because I will need daily PT forever and plan to continue with facial muscle-relaxing injections every 12 weeks. I’m truly blessed to have family, friends, and a health care team that have never let me feel like anything other than ‘me.’”