Jeff Mauerman

Jeff Mauerman

Savoring simple pleasures again
An experimental medicinal body piercing eased Jeff Mauerman’s swallowing disorder

This body piercing is no decoration. The earring-like stud that’s permanently affixed to Jeff Mauerman’s throat wouldn’t be much of one anyway, since it’s subtle enough to be easily missed upon first meeting him.

But that’s fine, because it serves a different purpose than self-expression or artistic proclamation. The tiny piece of metal is part of an innovative treatment developed by UC Davis experts aiming to help patients who’ve lost something most of us take for granted – the ability to swallow food and drink, or sometimes even swallow at all.

Side effects from cancer and treatment had once forced Mauerman, an engineer and early home-brewing hobbyist, to accept all liquid and food only through a tube in his stomach. After receiving the experimental device, he can now take all hydration by mouth and also enjoy sips of beer and other flavored beverages.

“It’s so nice to be able to have something different, something with flavor” Mauerman said of his status. “Although my taste isn’t that great, I can definitely tell the difference. And I’m happy that I have that much taste.”

He’s also begun tentative experiments with soft foods, and someday hopes to enjoy the taste and texture of food in earnest again as well. UC Davis researchers, meanwhile, hope that the device will eventually emerge from clinical trials as an arrow in a new quiver of treatments meant to help thousands of people regain basic quality of life.

Widespread problem

More than 15 million Americans are estimated to need treatment for various forms of swallowing problems or dysphagia, which can be caused by stroke, head and neck cancer, head injuries, advancing age or diseases such as Alzheimer’s and Parkinson’s.

Mauerman, an engineer with warm eyes and a kind, easy manner, gradually joined the ranks of dysphagia sufferers due the after-effects of throat cancer and treatments years ago. The seven weeks of radiation and chemotherapy that helped him suppress Stage III cancer in 2000 also badly damaged sensitive tissues in his neck; as years passed, the weakened structures began allowing food to get stuck in his throat or leak into his lungs.

That can cause pneumonia, and after multiple hospital visits for the respiratory condition, last year Mauerman was eventually forced to begin accepting all liquids and nourishment through an abdominal tube, as he had briefly during initial cancer treatment. The tube is connected to an external pump that he carries in a black pouch at his waist.

For Mauerman, the change meant no more tangy barbecue, savory holiday turkey, summer peaches or the craft beers that he once made as a hobby with an eye toward opening a small brewery. The stomach tube also made speaking at length more difficult, since oral liquids had served to replace moisture his damaged salivary glands could no longer produce.

Those factors also combined to create increased isolation for the Mauermans. As famed chef James Beard once said, “Food is our common ground, a universal experience.” And though no one ever acted rudely, the Mauermans found their social engagements drying up slowly along with his ability to dine and converse as usual.

“It’s amazing how much of your social life is affected by not eating,” Patti Mauerman said. “We don’t get invited to dinner because they say ‘Jeff can’t eat.’ They worry about it being uncomfortable for him.”

Search for solutions

The Mauermans visited specialists, tried speech therapy and underwent multiple swallow studies, to no avail. Hoping to try dilation to stretch his esophagus, Jeff Mauerman visited a gastroenterologist who referred him to the Center for Voice and Swallowing at UC Davis, focused on treating a wide array of debilitating laryngeal and esophageal disorders.

There Peter Belafsky, a UC Davis otolaryngology professor and the center’s director, could offer another possibility as well – a clinical trial of a unique new device he developed that allows a person to manually control the throat passageway to the stomach.

Known as the swallow expansion device or SED, the titanium implant might be one of the world’s first medicinal body piercings. It’s sewn into the cartilage under local anesthetic and, after healing, controlled by pulling a tiny metal pin that extends through the skin in the neck. The post, when pulled forward, manually opens the esophagus and allows food and water to pass.

It’s the first time a person has been able to manually control the entryway to the esophagus, said Belafsky, who also took part in the world’s second successful larynx transplant procedure at UC Davis in 2010.

“Frequently we save lives and don’t realize how profoundly we’ve altered the patient’s quality of life,” he said of the motivation behind the invention. “You may cure somebody of their cancer, but you’ve dramatically taken away their respect and dignity and their ability to function in society – and even in their own family. That’s often overlooked.

“Everything revolves around food, and that’s gone, and it’s not just gone for you, it’s gone for your spouse. It’s dramatically affecting quality of life.”

Medicinal body piercing

This January, Mauerman became the first person in the U.S. to be implanted with the mechanical device. After waiting several weeks to ensure it was fully healed and integrated, he worked with Belafsky to learn how to use it, watching his swallows on a scope to practice timing and technique.

“It was really exciting to think ‘here we are, we’re really using it and it’s really working,’ ” Mauerman said of the early tests.

Manipulating the device causes no discomfort, he said, but can feel a bit like a belch because of the similar sensation of a change in air pressure. A year into his two-year clinical trial to initially prove the safety of the device in humans, Mauerman is still able to drink liquids – and an occasional beer – though the acid in some beverages can burn his throat.

Even drinking water orally has been a huge benefit, Mauerman said, as it allows him to keep his mouth moist enough to hold longer conversations, and helps him stay hydrated without having to fiddle with his stomach pump.

Multifaceted approach

Mauerman has other challenges that are not addressed with the implant. He has acid reflux, deficits in his ability to sense and taste food, and a poorly functioning tongue. Belafsky and his team are working on these problems, with the goal of someday ingesting food again in earnest.

“It would be a huge step just to be able to have something other than water,” Mauerman said. “Then you could go to a restaurant and order a bowl of soup. That’s a huge milestone.”

Regardless of that outcome, Mauerman said he’s glad to assist research if it helps others in the future. If current SED trials are successful, the device will require further human trials before it can be accepted for widespread use. Belafsky and UC Davis researchers are also investigating other potential avenues of dysphagia treatment, such as a suction swallow device and the use of muscle stem cells to improve tongue strength and swallowing.

“We’re cautiously optimistic that Jeff will be able to swallow solid food within his lifetime, whether via this device or one of the other treatments we’re working on,” Belafsky said. “This is a first step to dramatically improve treatment of people with swallowing disorders in our lifetime.

“He had zero hope until now, and now we’re able to give hope to the hopeless.”