Aug. 4, 2011 at 4:22 PM ET
Over a two-year period, Toby Spencer traipsed from doctor to doctor describing his weird collection of symptoms -- all of them involving his left ear.
"One of the first, and probably most disturbing symptoms I had was hearing my left eye movements in my head," says Spencer. "In a quiet room it was so distracting that I would often resort to running a fan or some other white noise to attempt to mask it.
"My voice and breathing were also very magnified in that ear," he explains.
There were other strange signs: "If I turned my head too quickly, especially to the left, I felt like I was falling sideways," Spencer recalls. "Loud noises would also make me feel like I was losing my balance."
The doctors he saw offered various explanations for his hearing and balance problems: From tumors and aneurysms to a jaw disorder or a lack of equilibrium in his blood pressure.
But it wasn't until Spencer, a 41-year-old IT professional from Skowhegan, Maine, stumbled upon an online forum in which a person was describing almost his exact same symptoms that he learned about a rare condition known as superior canal dehiscence syndrome.
Dehiscence (pronounced dee-hiss-ence) is a fancy word for an opening or a hole. As he eventually learned from specialists in this disorder, Spencer's symptoms were caused by a small hole -- often not much larger than a pinhead -- in the bone covering the superior semicircular canal in the inner ear.
Discovered in 1998 by Dr. Lloyd Minor, a physician from Johns Hopkins, superior canal dehiscence syndrome (SCDS) can cause hearing difficulties, balance issues, or both.
One of the more unusual and bizarre complaints described by those with SCDS is hearing their eyeballs moving in their sockets, which supposedly sounds like sandpaper rubbing on wood. (Last week, the BBC ran an article about a British man with SCDS, who like Spencer, also described feeling his eyeballs moving.)
"What makes this condition very interesting and its symptoms sometimes difficult to believe is how a tiny hole [in an inner ear bone] can cause so many problems," says Dr. Daniel Lee, an ear and skull base surgeon at the Massachusetts Eye and Ear Infirmary in Boston, who specializes in SCDS and treated Spencer for it.
The tiny hole is caused by a thinning of the bones of the head and people are likely born this way, suggests Lee. This opening causes balance canals in the inner ear to be abnormally activated, and they respond to loud sounds and to pressure in the ear.
Besides the peculiar symptom of hearing your own eye movements, Lee says his patients also report hearing other noises unusually loud through the affected ear or ears. This may include the crunching sound of their own footsteps, their heart beating, the echo of their own speaking voice, or disturbingly loud reverberations when brushing their hair or shaving.
Sufferers may complain of dizziness or their eyes bouncing up and down from a loud noise, or feeling as if their ear is blocked.
Surgery is not needed simply because there is a teeny hole in the inner ear and the majority of patients do nothing at all after they are diagnosed, explains Lee.
But in April, Spencer had an operation -- a middle fossa craniotomy to plug the hole -- because he felt his symptoms were degrading his quality of life.
"My biggest nightmare was going two years without knowing what was wrong with me," admits Spencer. Now that his symptoms are gone, he "feels great, has more energy, and can enjoy things more."