Daniel Steinhauer has given up drinking and he’s given up smoking. But it’s swallowing – a sensation most of us take for granted and which he lost after major throat surgery – that Steinhauer’s craved the most.
“They told me before the surgery, it will be a slow recovery,” says the River Forest resident, referring to an eight-and-a-half hour operation in November 2007 for cancer of the larynx that had spread to his lymph nodes.
He had no idea just how slow.
Forewarned of the ordeal he’d have learning to swallow again, Steinhauer expected that, like many survivors of throat surgery, he’d get through the worst of it in three to six months. But for 14 months Steinhauer, who at one time worked as a sales rep in the food industry, couldn’t eat or drink.
Nourishment at that time was liquid, which he got from tubes hooked up to a valve installed in his stomach. As part of his post-op treatment at Loyola University Health System, he kept going through exercises to control his throat muscles enough to command a sequence of steps in swallowing. There were routine tests to check improvement in his throat reflexes.
But time after time, despite working with several therapists, Steinhauer didn’t show any improvement.
“Every time I took that test, I failed it miserably,” recalls Steinhauer.
The frustration got to be outright maddening. Steinhauer talks about last Labor Day, when he was intensely thirsty after yard work in 90-degree heat. He poured some Squirt into a glass of ice, put some of the soda in his mouth and swished it around.
“It just tasted so good, and the carbonation was so refreshing,” he says, almost achingly. “But I couldn’t swallow it.” He walked across his yard and let the liquid spill from his mouth.
That moment proved to be the darkness before the dawn. Weeks later, he met therapist Moira Aronson-Brown, who had just arrived at Loyola fresh from training on a relatively new electrical stimulation treatment that jump-starts throat muscles in surgery and stroke patients.
The therapy, patented as VitalStim, is neuro-muscular procedure the FDA approved in 2001. According to the company’s site, more than 100,000 people suffering from dysphasia – difficulty in swallowing – have gone through the treatment.
In the procedure, a therapist like Aronson-Brown at Loyola places four nickel-sized electrodes on a patient’s neck and then sends through an electrical signal that causes the throat muscles to contract.
“It was a pain,” Steinhauer says flatly. “Nothing to be relished. But you do it.”
He did. And as his throat muscles started to respond, Steinhauer worked diligently at the numerous exercises designed to strengthen the various muscles involved in swallowing. The big breakthrough came when he mastered what’s called the “super epiglottic swallow,” an exaggerated swallowing gesture that opens the epiglottis for swallowing and closes off the wind pipe. It’s not elegant, but it works.
“You raise your larynx up and forward, stretched out” he says. “It allows food to by pass the wind tunnel.” Food, which has texture, is easier to manipulate in his throat.
“Liquids are tricky,” he notes. “They can slip through the crack and into your lungs. When it gets past your esophagus, you’re OK.”
Steinhauer speaks glowingly of Aronson-Brown, if with a football reference.
Aronson-Brown, he says, helped him overcome “the Mike Ditka of swallowing diseases.”
Family parties were the toughest part of not being able to eat or drink, according to Steinhauer, who was still struggling with the nuances of swallowing as Thanksgiving came and went. By mid December, though, he had it mastered. And with that success, he got the best Christmas present he could ever have hoped for.
Eating will likely never be an unconscious process for Steinhauer. “There’s a special way I have to do it and precautions I have to take,” he says. But he is eating. Since the holidays, he’s put back on most of the 43 pounds he lost after surgery.
“I have to start watching my weight,” he said with a delighted grin between bites of pizza on Friday afternoon.
Steinhauer still takes his assorted medications in liquid form through his feeding tube, as pills can catch in his throat and down his windpipe.
That doesn’t diminish his enjoyment of pizza and other favorite foods such as steak and rib tips. And soda pop. He loves Coke and several other soft drinks, speaking of them with a passion that likely would sound strange to someone unaware of what he’s endured.
“There’s a pop … called Faygo,” he says, smiling. “The pineapple and orange, the stuff is awesome.”
Why he needed throat surgery
Like many men, Steinhauer, who is 54, only gave in and went to see a doctor after “three or four months” of symptoms that included a progressive tightening in his throat. When the Navy veteran, who’d smoked for 40 years, finally went to Edward Hines Jr. VA Hospital for a checkup, he feared his diagnosis would be lung cancer.
It wasn’t. He had Stage 4 cancer of the larynx that had spread to his lymph nodes. To live, he needed surgery within days.
The good news was that, because he needed surgery immediately – and Hines was booked to capacity – he was asked if he’d mind having the operation at the Cardinal Bernardin Cancer Center in the Loyola University Health System.
“I said I’d be quite satisfied with that,” says Steinhauer. He was encouraged that cancer of the larynx was a common cancer with an established treatment. He was equally encouraged by his doctor at Loyola, Dr. Chad Zender.
“I got lucky,” he said. “I got a guy who really knew what he was doing.”
After his surgery in November 2007, Steinhauer spent four days in intensive care, followed by months filled with 38 radiation treatments and three chemo doses, during which time he lived at Hines. Going home for recovery meant returning to his mom’s house on Franklin, where the 1974 Oak Park and River Forest high graduate grew up.
During his long recovery, he’s had what he calls “unforeseen obstacles” in addition to the challenges in learning how to swallow.
He’s had two bouts of pneumonia and numerous bacterial infections, one caused by a solid medication he aspirated into his lung. He continues to suffer lethargy because of the effects of radiation on his thyroid gland. And to slowly remove a large sack of fluid that collected on the front of his neck under his chin he’s had to diligently practice even more exercises.
Yet for all the fluid buildup, the one fluid Steinhauer couldn’t produce was saliva. Those glands, too, were also shut down by his radiation treatments. To this day, he sometimes has to moisten his throat with a spray bottle. A phone call to his home Friday morning was answered by a barely audible rasping croak.
“Excuse me,” he said, returning to the phone seconds later after moisturizing his throat. “The first words of the day come out like that.”
One more thing
Steinhauer says his next goal is to get his normal voice back. He speaks in a reedy, shallow voice, almost a falsetto. Which is appropriate, as he’s using his second set of vocal chords, located behind the primary chords, which are called the “falsetto.” He hopes to change that sound with exercises and other therapy.
“They left the original vocal chords,” he says, noting the chords are atrophied from the radiation. “They’re trying to get my voice lower.”
Whatever happens Steinhaueradmits that whatever is left to go through will be nothing compared with where he’s been.
“There’s a world of difference,” he says, using another football reference: “It’s like 90 yards difference.”