SSCD: Body sounds are too loud for people with this condition

SSCD: Body sounds are too loud for people with this condition

Imagine what it would be like to hear your eyes blink or your heart pound... every second of the day.

These internal body sounds are all too real for people suffering from a rare medical condition.

Diagnosing the symptoms is the first step to a cure.

"I could actually hear myself blinking. I could hear my eyes moving side to side. I could hear my own heart beat. Like the heart was put right on my ear drum... Boom, boom, boom," says Renee Godbout Jarvinen.

Jarvinen went to doctors and a psychiatrist searching for answers but to no avail.

For four long years she was caught up in a real life medical mystery.

Renee's symptoms were both baffling and debilitating. Her search for answers brought her to the Duluth Clinic and Dr. Mark Rhodes.

"This disease is very uncommon," says Dr. Rhodes.

Finally, Jarvinen had a diagnosis.

"Superior Semicircular Canal Dehiscence. These funny handles up here are called the semicircular canal. The most top one is the superior one and is supposed to be covered by bone. And this area of bone is dehiscent... or missing," said Dr. Rhodes.

Jarvinen's diagnosis was confirmed by a surgical team at the University of Minnesota Medical Center.

"The way to fix it is actually to plug the hole up," says Neurotologist Dr. Tina Huang.

Surgeons opened her skull and gently lifted her brain to access Jarvinen's semicircular canal. Her own tissue was used to fill the holes.

Jarvinen had her first surgery in January.

Her second was performed in June.

One year after Dr. Rhode's diagnosis she is well on her way to recovery.

"I no longer hear my eyes move, or blink," says Jarvinen.

Dr. Rhodes is pleased with her progress and the results, "She's gone through a lot of surgery and a lot of recovery and she is just doing excellent... She looks great!

Superior Semicircular Canal Dehiscence (SSCD) is rare and often misdiagnosed.