The nuts and bolts of the human body fascinates those in the medical and science fields. But Rachel Pyne found her body anything but intriguing after she began to hear its innermost workings. Nine separate doctors struggled to make a solid diagnosis of the bizarre problem. Happily, though, the tenth medic she saw made the most unlikely discovery.
It all began in March 2014. Pyne, a photographer from Merrillville, Indiana, started to hear strange noises, seemingly emanating from inside her own body. She’d pick up every beat of her heart, while each step that she took was amplified to an amazing degree. Incredibly, Pyne would even be aware of the sound of her food being digested. Understandably, it didn’t take long until this freakish affliction became overwhelming for the then 27-year-old.
“It was crazy,” Pyne told the UCLA Newsroom. “I could hear my eyes swoosh around as I moved them back and forth, like moving your hand in water.” Moreover, with all those sounds bouncing around in her head, it wasn’t long before the photographer’s balance was adversely affected.
Pyne also endured terrible dizziness and feelings of sickness. “I couldn’t fall asleep,” she recalled. “I would lie there and wish that my head would stop spinning. It was chaos in my ears.”
Furthermore, even simple, everyday things became intolerable. “I couldn’t watch TV,” the photographer told the Huffington Post. “I couldn’t listen to music. It got to the point where I couldn’t even go into a grocery store anymore.”
Unsurprisingly, Pyne was desperate for answers, but diagnosing the problem proved just as big an ordeal. She saw nine different people across the country, with the majority believing that migraines lay at the root of her problems. One diagnosis in particular left Pyne especially disheartened.
“One doctor told me I was just going to have to live with it,” she told the UCLA Newsroom. “That was devastating.” After seven months of searching for answers, then, Pyne’s options appeared to be dwindling. However, things suddenly changed thanks to her discovering an online support group.
That support group was set up by an ex-patient of Dr. Quinton Gopen, an ear surgeon at the Ronald Reagan UCLA Medical Center, and his co-worker Dr. Isaac Yang. Through the group, Pyne discovered more about cases similar to hers. Furthermore, she read about the two doctors’ methods of dealing with the problem. With her hope restored, she flew to Los Angeles in September 2014 for an appointment with Dr. Gopen.
Miraculously, within minutes of her arrival, Gopen told her that he knew what was wrong. It turns out Pyne was suffering from a very rare condition known as superior semicircular canal dehiscence (SSCD), which affects just two people in every million. With that in mind, misdiagnosis is unsurprisingly very common.
“Basically, [SSCD is] a hole that develops between the inner ear and the brain,” Dr. Gopen said. “That region of the inner ear has sealed compartments with little fluid chambers, and occasionally a hole will develop in the bone and allow for these problems to arise.”
“A lot of these [misdiagnosed] patients are seeking psychiatric help because they’re just mentally worn out,” Gopen added. “They can’t escape the condition and it really kind of grinds them down.” Pyne could certainly relate to that prior to their meeting, but her mood immediately changed following Gopen’s diagnosis.
“Dr. Gopen diagnosed me within 15 minutes and said, ‘Absolutely we can do surgery,’” recalled Pyne. “I was crying because I had been through so much.” Despite the condition being incredibly rare, Gopen and Yang had actually seen – and operated on – 60 patients suffering from SSCD.
“Patients are relieved to learn that this situation has become routine to us,” Yang said. “Because we see a lot of these cases, we not only believe them when they say they can hear their eyeballs or neck muscles move, but we can help them.” That experience led the pair to develop a pioneering technique that was only mildly invasive to their patients.
“Traditionally, you’d need to have a big middle fossa craniotomy,” Yang continued. “That’s a type of surgery that requires a sizeable hole in your skull, which leaves a larger scar and requires a much longer recovery time. What we’re doing now is performing the entire operation in a hole the size of a dime.”
Prior to performing the surgery, the doctors use a CT scan together with a sophisticated probe to outline their patient’s brain. This then shows them exactly where to penetrate the skull. “Our neuro-navigation system is like using GPS for the brain that allows us to target that itty, bitty hole between the inner ear and the brain,” Yang explained.
“These holes in the bone are only a millimeter or two wide,” added Gopen. “That’s about the size of the hole in the tip of an ink pen, so we really need to be precise and know exactly where we’re going.” From there, the pair could begin the delicate operation on their patient.
The procedure lasts around 90 minutes. First of all, Dr. Yang makes an incision in the skull and lifts the the brain away. This allows Dr. Gopen to reach the space between the skull and ear. Gopen then focuses on the small hole in the inner ear bone and fills it with an artificial substance called bone wax.
Patients normally feel the benefit immediately and Pyne was no exception. Recalling her November 2014 operation, the photographer said, “As soon as I woke up from surgery I was like, ‘Oh my gosh, it’s gone!’ Looking back, I’m actually happy that so many doctors turned me away and told me they couldn’t help, because Dr. Gopen and Dr. Yang did.”
“I’m just so thankful,” she continued, knowing that those painful few months were behind her. “I couldn’t stop thanking my surgeons. It was probably the happiest day of my life.”
The intricacies of the human body remain as fascinating as ever, despite hundreds of years’ worth of scientific study. Thankfully for Rachel Pyne, though, two doctors defeated her rare affliction. As a result, she can rest easy knowing that she can’t hear her own body tick now.