Woman fights to determine affliction

Woman fights to determine affliction
7:32 AM, Jul. 3, 2011

Imagine a never-ending migraine that renders you practically incapacitated. Imagine near constant dizziness and nausea that makes riding in a car intolerable. Imagine being so sensitive to sound that listening to music in church becomes agonizing.

Jennifer McBeth doesn't have to. The Dallas woman has lived through the pain and suffering. She has been to a legion of doctors and specialists, and undergone a slew of tests. She was told she might have multiple sclerosis, and that her condition might just be in her head.

But she never gave up hope, and today, after finding the right expert and getting the right diagnosis and the right treatment, she is mostly symptom-free.

McBeth was diagnosed with superior canal dehiscence syndrome, a rare medical condition of the inner ear. It results from a hole in the skull's temporal bone overlying the superior semicircular canal. The primary symptoms are dizziness, vertigo and nausea.

She was diagnosed by Dr. P. Ashley Wackym at the Ear and Skull Base Institute in Portland. Wackym is a published expert and highly sought-after speaker in the field. He's a lifesaver in the eyes of Jennifer McBeth and her husband.

"We were actually hoping for dehiscence, because we heard the word fixable," Barry McBeth said. "How often do patients who have had symptoms four or five years hear the word fixable?"

Wackym did surgery to repair the condition in McBeth's left ear, essentially plugging the bone.

McBeth's symptoms date to March 2006, when she was a happy, active teacher's aide assigned to an autistic boy at Brush College Elementary School.

She thought she just had a cold, but the headaches, the dizziness and the nausea never really went away. The pain and discomfort forced her to wear sunglasses, even indoors. Earplugs were another necessity because of her sensitivity to sound.

She eventually had to quit her job and go on disability. The mounting medical bills have been a financial hardship on the couple. Barry works in maintenance on the Western Oregon University campus in Monmouth.

Jennifer was seen by a parade of doctors, including a neurologist, a headache specialist, a neuropsychologist and a specialist in treating multiple sclerosis. No one could provide a definitive diagnosis, but "probable MS" was entered in her file. Medications proved ineffective.

"She's seen brilliant doctors in this area who can do wonders for you on any given day," her husband said. "They just didn't have experience in this field."

Research on superior canal dehiscence syndrome is relatively new. The condition was discovered in 1995 by Lloyd Minor of the Johns Hopkins Center for Hearing and Balance.

Minor believes the underlying cause of the syndrome is an opening in a layer of bone that fails to develop to normal thickness during or after birth. He estimates that two-thirds of people who have superior canal dehiscence will never need surgery.

McBeth must have had the syndrome since birth, but the symptoms didn't surface until later in life.

The symptoms became so bad that she couldn't stand riding in the car because of motion sickness, and she had to stop going to church because she couldn't tolerate the sound of the music.

Last fall, the migraines came and stayed. There was no relief for the pain. Although she had been told by medical professionals that there was nothing more they could do for her, she continued to press them until she was finally referred to Dr. Wackym.

"I would never have gone looking for help had it not gotten worse," she said.

She had kept an extensive log of symptoms and brought it to her first appointment with Wackym.

"He took time to read the symptoms," her husband said, "and he thanked her a couple times for bringing them in."

Wackym tested her balance and coordination. When she was asked to stand on one leg and close her eyes, she practically fell over. She got to take a spin on an Epley Omniax System, which uses NASA technology to diagnose and treat vertigo-related disorders.

A high-resolution CT scan confirmed that she had a hole in the temporal bone on her left side, and Wackym recommended surgery to repair it.

http://www.statesmanjournal.com/article/20110703/COLUMN0807/107030349/Woman-fights-determine-affliction