- Associated Press - Thursday, December 3, 2015

MERRILLVILLE, Ind. (AP) - Rachel Pyne could hear every breath she took. And her eyes moving. And food going down her throat.

And she thought it was normal. Since she was a little girl, the sound of her heart beating boomed in her eardrums like a subwoofer. But, she thought, didn’t everybody hear that?

It wasn’t until the noises overwhelmed her, to the point she could hardly get out of bed in the morning, that she sought help.

That was a process in itself.

“I went to nine different specialists,” said Pyne, 28, a photographer who lives in Merrillville. “Most of them told me I had to live with it, and it was some form of vertigo.

“Two diagnosed me with migraines. I didn’t have headaches, have never had headaches. It didn’t really make sense to me.”

Even after all the misdiagnoses, Pyne’s mother pushed her to keep seeking help. Persistent Googling led them to physician No. 10: Dr. Quinton Gopen, an ear and skull specialist at Ronald Reagan UCLA Medical Center in Los Angeles.

Gopen is one of a handful of physicians with expertise in superior semicircular canal dehiscence, or SSCD, a condition that results from an abnormal opening in the inner ear’s balance chamber. People with the syndrome can suffer hearing loss, dizziness and, yes, even hear their bodily functions in booming surround-sound.

Pyne traveled to California, where Gopen diagnosed her with SSCD.

“She was young enough when it started, she thought that’s how things were supposed to be,” Gopen said. “Most of the patients I see, the conditions start in adult life. As soon as the sounds start, they’re more bothered by that than anything.

“But they’re told to live with it or given the wrong medications and treatment. A lot of people are self-diagnosed.”

That’s because the condition was only discovered in 1998 and is estimated to affect only 1 in 500,000 people. Pyne was likely born with it.

After her diagnoses came surgery, which consisted of Gopen and a fellow surgeon drilling holes near each of her ears and plugging the abnormal openings with bone wax, fatty tissue and glue.

The first surgery cleared up the dizziness. The second one got rid of the sounds.

And with that, she was cured.

Doctors say she should be fully recovered by May, a year after her final procedure. She still experiences some pain and fatigue but says the “crazy symptoms” have subsided.

To this day, she can vividly recall the odd sounds she would hear when the condition was at its worst.

When her eyes moved, it sounded like someone was playing a kazoo. When her neck muscles shifted, it was as if people were cracking their knuckles inside her ears. Her own breathing was like talking to a heavy-breather on the phone.

Does she ever hear the noises still?

“No, I don’t,” she said, sounding relieved. “It’s pretty quiet.”

___

Source: The (Munster) Times, http://bit.ly/1XI1NEW

___

Information from: The Times, http://www.thetimesonline.com

LOAD COMMENTS ()

 

Click to Read More

Click to Hide