Swedish ‘Lou Gehrig’s’ patient becomes first recipient of breathing technology | by Kelly Pate Dwyer

Mac Gordon

Posted on Thu, Jan 16, 2014

A surgical team at Swedish Medical Center recently implanted a cutting-edge, pacemaker-like device that expands breathing capacity into a “Lou Gehrig’s Disease” patient, potentially improving and extending his life. It was the first such procedure on a Lou Gehrig’s patient in Colorado.

Amyotrophic lateral sclerosis, often called “Lou Gehrig’s Disease” for the famous Yankee player who died from it, is a progressive, incurable neurodegenerative disease that hinders nerve cells in the brain and spinal cord from communicating with muscles, including the diaphragm. As a result, breathing (and other normal functions) becomes progressively more difficult.

Mac Gordon, 57, of Superior underwent surgery in July, eight months after his ALS diagnosis. “His diaphragm is getting stronger,” says his wife, Sharon Gordon, 54. “It’s not as laborious for him to breathe,” she says, speaking for her husband, whose speech is slowly deteriorating. Although he can still walk, Gordon spends more time in a wheelchair, largely because of lack of energy. He’s lost more than 70 pounds off his 6-foot, 3-inch frame since diagnosis.

“The key is getting the word out that the time to consider a pacer is earlier rather than later.”

Oberlin, Ohio-based Synapse Biomedical Inc. developed Gordon’s pacing device, which stimulates nerve communication from the brain to the diaphragm. The diaphragm accounts for about 70 percent of a person’s ability to breathe, explains Lonnie Martinez, director of respiratory care at Swedish, and a member of the surgical team led by Dr. Richard Tillquist.

respiratory care

Lonnie Martinez, director of respiratory care at Swedish Medical Center, holds the diaphragm pacemaker device designed to expand a patient’s breathing capacity.

During the procedure, done laparoscopically, Tillquist placed electrodes in the diaphragm close to where phrenic nerve endings attach. The electrodes attach to wires powered by an external, battery-operated box that sends signals for the diaphragm to contract. “The impulses keep the nerve viable for a longer period of time,” Martinez says.

The device was developed to allow quadriplegics, including the late actor and activist Christopher Reeve, to breathe without lugging around an external ventilator, says Tillquist, who has performed the procedure on patients with spinal-cord injuries. By using a pacer, Tillquist notes, patients avoid the downsides of external ventilation, including lung infections.

Synapse’s trials show the pacer can extend an ALS patient’s life by an average of 16 months, when used in combination with non-invasive ventilation, or NIV, which many ALS patients connect to only at night while sleeping.

“The key is getting the word out that the time to consider a pacer is earlier rather than later,” says Tillquist. He suggests physicians broach the subject with ALS patients at the time of diagnosis because the pacer is less effective as the nerves start dying and the diaphragm weakens.

A closer look at the pacemaker-like device

A closer look at the pacemaker-like device

Neck discomfort is one side effect for Gordon, pain that results from the pacer sending impulses through the phrenic nerve up to the brain. Still, Mac Gordon believes that’s a fair trade off for his improved breathing capacity, his wife says.

Several other locals living with ALS are considering the procedure, Martinez says. About 500 people diagnosed with ALS reside in Colorado, according to the Rocky Mountain chapter of the ALS Association.


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