Amanda Rush is a social person with what the Wisconsin native calls a "big personality." After college, she spent several years moving around with her then-husband, a scientist. They first moved to France for his post-doctorate fellowship, then to Birmingham, Alabama, for a second post-doctorate fellowship, and eventually to Salt Lake City for his job opportunity.
One morning while living in France, Amanda woke up with an annoying twitch in one eye. It was similar to the twitches millions of people experience from time to time when they are under a lot of stress or have had too much caffeine or not enough sleep. Except this twitch didn't seem to go away. Already a health-conscious person, she figured maybe she should stop drinking caffeine, make some adjustments to her diet, and work harder to reduce stress and get adequate sleep.
Even with these changes, Amanda's twitch went from a tiny quiver in the corner of her eye to a major twitch causing the area under her eye to flutter and move constantly. Sometimes it would last for hours or even days, then it would stop. It impacted her work as a yoga instructor and job interviews after the move to Birmingham—and it seriously affected her confidence. Amanda's big personality was suddenly shrinking as she became more withdrawn.
"People said they couldn't actually see it was happening, but I knew it was happening all the time," she said. "It really did start affecting my day-to-day life."
Amanda talked to her primary care doctor, who suggested Botox injections to calm the area around her facial nerve. After three treatments, the only change was some strange stiffness that left her expressionless on the right side of her face; the twitch was still there. Research led her to learn the name—hemifacial spasm. But as far as treatment, she could only find information on an invasive surgical option with a long recovery.
When Amanda and her husband moved to Salt Lake City, the spasm got progressively worse, but she resigned herself to just living with it. "The spasm took on a life of its own," she said. "You wouldn't see me without my right eye covered, I had bangs, and I wore my sunglasses as often as physically possible."
Amanda's entire right side of her face was affected: a drooping cheek, a constantly closing eye, and lip paralysis. The right side of her mouth made her look like she was angry or smirking all the time. It made her self-conscious teaching yoga in front of a class of people and sent her into a deep depression.
"My face wasn't doing what it was supposed to," she said. "I was presenting to the world in a way that I didn't feel comfortable. I was betrayed by my own face." It got bad enough that Amanda decided to consult a neurosurgeon and asked her OB/GYN for a referral.
By November 2019, the twitch was impossible to hide. Paralysis caused her to drool constantly, she spoke with a lisp, and she couldn't articulate her words. She started to withdraw from most of her life, spiraling into fear, anxiety, and self-loathing.
After several months trying to get an appointment, she was finally scheduled for an MRI and referred to a neurologist. He saw the blood vessel pressing against her facial nerve and sent her to Dr. John Rolston, director of functional neurosurgery at University of Utah Health and one of only two functional neurosurgeons in the state.
According to Rolston, it's important to see a specialist for a proper diagnosis when you experience facial twitches to rule out other less benign conditions like a brain tumor that could be the cause.
"There are a lot of reasons to have twitches in your face, and most of them are not hemifacial spasm," Rolston said. "This will get worse over time. It can get so bad that it causes you to not be able to open your eye, which makes things like working, reading, or driving difficult. It can also be very disfiguring. If someone's face is contorted with a spasm, it can make their face asymmetric or make them feel very self-conscious about how they look."
Amanda was an ideal candidate for surgery, but not the same invasive procedure she read about in her earlier research. Rolston uses a minimally invasive approach called a "keyhole surgery."
It begins with a small incision about the size of a quarter behind the ear of the affected side of the face. Rolston uses a microscope to find the blood vessel pushing on the facial nerve and separates them, inserting a small piece of Teflon to create a permanent cushion between the nerve and the blood vessel so it won't move back. Finally, Rolston patches the incision using a piece of titanium strong enough to protect the skull without setting off metal detectors or causing issues later if the person needs an MRI or other treatment.
One of the biggest concerns with surgery in the area of the facial nerve is the risk of damage that could lead to facial weakness, or drooping, on one side. The other concern is the auditory nerve, which is close to the facial nerve; damage to it could result in permanent hearing loss.
To prevent nerve damage during surgery, Rolston uses small electrodes that monitor facial muscles throughout the entire procedure. He also puts a small speaker that emits a click every second inside the person's ear, allowing the surgical team to see in real time that the brain is still converting the noise into brain waves. One team member continuously monitors these sensors and alerts Rolston if there is a problem so he can stop before the nerves are damaged.
"All of my nerves were right there in one little cluster, so they had to use electrodes to make sure everything was still functioning properly," Amanda said. "Dr. Rolston was telling me how they would monitor during surgery, and I was really put at ease."
Since Amanda's twitch was so pronounced, as soon as Rolston separated the blood vessel from her facial nerve, he could see the spasm stop and knew he fixed the problem. When Amanda woke up, she also knew immediately that the surgery was a success. "The second that I knew it was gone was this insane moment of just elation—pure joy."
While her experience with the facial twitch was very difficult, Amanda says she wouldn't change anything about it. "I got to really figure out who I was on the inside," she said. "I came out of it a better version of the person I want to be. Once the surgery was complete, it felt like I had my life back. It was life-changing, and now I match on the outside what I feel like I am on the inside. I'm a whole person."
Rolston wants people suffering from hemifacial spasm to know there are options. The condition responds incredibly well to surgery for most patients who experience spasms that interfere with daily life, even when other conservative treatments have failed (like the Botox injections and acupuncture Amanda tried).
"Many people with this condition think there is no treatment available for them, but in fact there are many effective treatment options," Rolston said. "It's one of the most gratifying surgeries, when the patient wakes up with a disease that has been disrupting their life for so long suddenly cured. There is so much reason to have hope."