Nearly five years ago, Teri Cook
felt some twitching in the bottom of her right eyelid that wouldn’t go away.
What this 44-year-old from Perth, Australia, thought might be the side-effects
of a strenuous weightlifting workout soon turned into a health nightmare. It
would essentially rob her of many of the pleasures in her life—attending
parties, reading, even going outside to bring in the mail—before sending her
thousands of miles away to Pittsburgh for help at UPMC.
After visits to an
ophthalmologist and multiple neurologists in Australia, she was ultimately diagnosed
spasm, or HFS, a neuromuscular disorder characterized by frequent,
involuntary contractions on one side of the face. Most often, it’s caused by a blood vessel
pressing on the facial nerve at the point where the nerve exits the brainstem.
Cook, who manages the family
investment company from home, quickly tried the most common treatment for the
disorder—injections of botulinum toxin. By that time, she couldn’t read, work
on her computer or safely drive because of the effects of the spasms. She’d
become a virtual recluse in her own home, avoiding her husband’s work functions
and afraid to show her contorted face to friends and neighbors. The regular
shots of botulinum toxin were becoming increasingly less effective and gave her
face a frozen, stroke-like appearance, she recalls.
Desperate and miserable, she soon
learned of a surgical procedure, called microvascular
decompression, that could relieve the pressure on the facial nerve that was
causing the problem. Warned by some doctors that the surgery could be “highly
risky,” she says, she plunged ahead anyway and had the procedure in Australia
in 2011. It worked—but, sadly, only for three days. “I was just devastated,”
says Cook. “And it just got worse and worse.”
Determined to find a cure, she continued
her online search for a permanent solution and finally found it on a Facebook page
for HFS sufferers, which led her to Raymond
F. Sekula, Jr., M.D., director of UPMC’s Cranial
Nerve Disorders Program. One of the most experienced surgeons in the world
when it comes to treating HFS, Dr. Sekula has performed more than 500 microvascular
decompressions. New techniques and tools, he says, are producing better results
for patients. Side effects like stroke and hearing loss are increasingly rare,
and more than 90 percent of his patients have become spasm free.
After making contact with Dr.
Sekula and the UPMC Global Care
program, which helps to coordinate care, housing and other services for
international patients, Cook learned that Dr. Sekula could help. Despite her
earlier surgery, MRI images showed that there was still significant compression
of her facial nerve by a blood vessel, says Dr. Sekula. So she and her husband,
Warren, left their 21-year-old daughter behind and made the 35 hour trip from
Perth to Pittsburgh—her first trip to the U.S. She had microvascular
decompression surgery at UPMC on March 26 and was in the hospital for less
than 24 hours.
Since then, she’s seen remarkable
improvement—although it could take nearly two years before she is spasm free,
according to Dr. Sekula.
is the most wonderful feeling when my face is quiet and the drumming in my ear
stops!” she recently wrote to him from Australia. “Today whilst Warren and I
were shopping, I was able to feel confident in looking shop-keepers in the face
and chatting to them with two open, engaged eyes! What a delicious