Sleep Disorders Patient Story: Ken Neidert
Making the Right Diagnosis
When a person has a sleep disorder, the right diagnosis and treatment can make all the difference. No one knows this better than Ken Neidert.
Ken, 65, who is retired, performed quality assurance work in the foundry industry. He and his wife, Barbara, live in New Berlin, Wisconsin.
For years, Ken never got a full night’s sleep. With chronic back problems, he woke often with back pain and or legs cramps. Ken believed that his back pain kept him from falling asleep or sleeping well during the night. He would wake up in the morning feeling tired and yawned throughout the day.
Then, something happened that led Ken in a new direction. Following hand surgery in 2004, the anesthesiologist told Ken that it had been difficult to awaken him, and he recommended that Ken look into this.
Ken followed up on this news with his primary physician, who arranged for Ken to see a pulmonologist. The physician took a case history and then arranged for Ken to take part in a sleep study at a local hospital. A sleep study (a polysomnogram) is a test that provides data to evaluate sleep-related problems, such as identifying sleep stages, body position, blood oxygen levels, respiratory events, heart rate, muscle tone, snoring levels and overall sleep behavior.
After the study, Ken was diagnosed with obstructive sleep apnea. In this disorder, the airway is obstructed, causing a temporary suspension of breathing (10 or more seconds) repeatedly during sleep. (Ken would later discover that this diagnosis was incorrect.)
Ken was instructed to use a continuous positive airway pressure (CPAP) machine during sleep. A CPAP machine delivers a controlled stream of air (through a mask) into the airway of a sleeping person. The flow of air creates enough pressure when a person inhales to keep an obstructed airway open. Ken used the CPAP for a month, but could not tolerate the high pressure of the device.
He tried using another device called a bilevel positive airway pressure (BiPAP) machine. Unlike CPAP, BiPAP monitors breathing and provides two different pressures — a higher one during inhalation and a lower pressure during exhalation. But after using the BiPAP, Ken did not get much relief and was still tired in the morning. “I felt rushed to fall asleep because I knew the machine would change to a much higher pressure after 20 minutes,” he said.
Referral to Froedtert & the Medical College of Wisconsin
Because people with obstructive sleep apnea (Ken’s diagnosis) may be candidates for surgery to remove the obstruction, Ken’s pulmonologist referred him for a surgical evaluation with B. Tucker Woodson, MD, Froedtert & the Medical College of Wisconsin otolaryngologist. Dr. Woodson is director of the Sleep Disorders Program at Froedtert & the Medical College.
“Dr. Woodson did a complete workup and said I did not have any airway obstructions that would be causing my sleep apnea,” Ken said. Dr. Woodson then conducted a sleep study to determine the severity of Ken’s sleeping problem. He conducted tests including X-rays of the upper neck, pulmonary capacity and blood oxygen levels. Rose A. Franco, MD, Froedtert & the Medical College pulmonologist in the Sleep Disorders Program, also became involved in Ken’s care.
The sleep study conducted at Froedtert & the Medical College revealed new information. “Within a half hour, they woke me up and Dr. Franco said, ‘you have a heart problem,’” Ken said. Ken was taken immediately to the catheterization lab for a more extensive view of his heart. The catheterization revealed a mild blockage, which was not alarming. The next night, another sleep study was conducted.
Ken was diagnosed Cheyne-Stokes central sleep apnea, an abnormal pattern of breathing often related to heart failure. (Heart failure means that the heart’s pumping power is weaker than normal.) Cheyne-Stokes can also occur with chronic kidney disease and in some acute spinal diseases causing compression of the brainstem where the regulatory center for breathing is found.
- Cheyne-Stokes respiration is characterized by a cycle of breathing that involves very deep inhalation and exhalation followed by complete cessation of breathing (apnea).
- Central sleep apnea, a less common form of sleep apnea, occurs commonly in heart failure. Central sleep apnea is caused by a dysfunction in the brain and the mechanism that controls breathing.
Dr. Franco explained that breathing is normally controlled by a cycle of events that involve the level of carbon dioxide (CO) in the blood. The brain signals the muscles to breath in accordance to the CO level. Heart failure disrupts this cycle, and Cheyne-Stokes respiration is the result.
“In Ken, the heart and the brain were not in synch to regulate the level of carbon monoxide between the central nervous system and his lungs,” Dr. Franco said.
New Technology Makes the Difference
Initial treatment for Ken involved the use of oxygen and medication in an effort to reduce the number of apneic events. Ken used an oxygen mask during sleep for two months, but didn’t notice any significant difference in his daytime sleepiness.
Then, a new device became available specifically to treat people with Cheyne-Stokes respiration in heart failure. In March 2006, Ken began using an adaptive servo-ventilation (ASV) system. He was the second patient in the Froedtert & the Medical College Sleep Disorders Program to use this innovative device.
“This machine made the difference we were looking for,” Ken said. “Every night, I look forward to sleep. I no longer lay awake trying to fall asleep. Only occasionally do I wake up during the night due to pain.”
“The ASV system senses a person’s breathing volume and stabilizes it to prevent shallow breaths,” Dr. Franco said. “A sensor measures the volume of air exhaled with each breath. As a person’s breaths become shallower, the system sends more air into the lungs so the person breaths normally. This breaks the cycle of central sleep apnea.”
“The device mimics your breathing pattern,” Ken said. “If you stop breathing, it helps you continue on with your normal pattern. It made an immediate difference in my sleep quality. I’m not tired in the morning; in fact, I have to force a yawn. I sleep a solid eight hours. It’s a marvelous machine! I wouldn’t give it up.
“For the first time in our marriage, my wife asked, ‘what are you doing in bed at 8:30?’ I used to be up at the crack of dawn. It’s so good to make it through the night with complete rest.”