Surgeon helps treat a rare side effect.
Talking and eating were not an option for Anthony Jones. He couldn’t even close his mouth.
After months of intubation battling COVID-19, Anthony was diagnosed with macroglossia — an extremely enlarged tongue that makes swallowing and speaking impossible.
He spent 12 hours a day laying on his stomach for three weeks to repair his lungs. While the treatment restored his health and breathing, his tongue remained enlarged, stretching down past his lips and chin.
And none of the health care specialists in his hometown of Lake City, Fla., could diagnose or heal Anthony’s tongue.
“No one knew what to do,” his wife, Gail, recalled. “All of the doctors were shaking their heads.”
It wasn’t until discovering a surgeon 800 miles away — in Houston — that Anthony could begin to hope for a brighter future, one where smiling would be a possibility again.
A worker at a private ambulance service, Anthony came home from a summer shift one evening with a high fever and body aches. By July 2, he was feeling so sick, he went to the emergency room to be tested for the coronavirus.
“He was in bed, and it was like he had no energy,” his wife said.
His test came back positive, and his condition continued to worsen; by July 8, he was back in the hospital.
“The next day, he was on a ventilator,” Gail recalled. “And there was no contact. We couldn’t see him at all. I was calling every two hours to check up on him.”
She had no way of knowing that his tongue had enlarged, extending more than 3 inches from his mouth.
It wasn’t until weeks later, during a FaceTime call, that she learned of the condition. Later, when he was released from the hospital, his tongue was still enlarged, and doctors had no prescriptions to help.
Gail was charged with feeding him through a tube since he could no longer swallow. Every four hours, she wrapped his tongue to prevent it from becoming too dry and cracking.
Only a couple of months earlier, Gail herself had recovered from renal failure. She was back at her job at a mental health hospital for only a short time before she had to take medical leave to care for her husband. She held onto faith that she could find a solution for Anthony’s predicament.
But an August visit to a Florida ear, nose and throat surgeon only added to their frustration.
“He told me that he didn’t really know how much to cut,” said Anthony. Nor could the surgeon promise to preserve his patient’s sense of taste or his ability to speak.
On the way home from the appointment, Anthony teared up, imagining a life of feeding tubes and written communication.
“I guess I’m better off dead,” he thought.
He asked Gail to take him to his parents’ house. He then asked his father, Leroy Jones, to come outside to pray with him.
In the meantime, his mother, Mary Ann Jones, a retired nurse, Googled his condition. In her internet search, Houston’s Dr. James Melville appeared like a beacon. The doctor of dental surgery and associate professor and oral surgeon at UTHealth School of Dentistry had experience with macroglossia and tongue surgery. He had even published a case study on macroglossia in the Journal of Oral Maxillofacial Surgery in 2017.
“It’s a relatively uncommon condition,” Melville said. “Only a rare subset of people develop massive macroglossia.”
He treated a patient who developed the condition in Houston after she too was intubated a couple of years ago. He was able to successfully treat the woman and a second patient with the disorder. Both recovered their ability to taste food and to talk.
Mary Ann emailed the doctor immediately, writing, “I have a very big problem that is killing me. I am the mother of a 46-year-old son that has an extreme case of macroglossia.”
She begged him to take their case.
Melville responded in a matter of minutes.
“She told me his story,” the surgeon recalled. “I asked if she could send pictures. I told her, ‘I can help right away. I can give him a better quality of life.’ ”
That night, Gail sent Melville photos of her husband.
“I knew a change was coming,” Anthony said. “I knew it would be different because someone knew what was going on — and how to help.”
Gail worked with a case manager to get insurance coverage for the out-oftown surgery.
The Jones family and their church congregation pooled resources to cover expenses for the trip.
On Oct. 13, the family flew to Houston; two days later, Anthony was ready for surgery.
Melville performed a partial glossectomy, or the surgical removal of a portion of the tongue. Glossectomies are often part of the treatment for tongue cancer.
“It’s modifying the structure,” he said. “You keep the portion that has motion and sensation and sew it back together.”
By preserving the important parts of the tongue, he is able to preserve taste and speech. Often, other surgeons are too concerned about negatively affecting one or the other and steer clear from operating on the tongue in general, Melville explained.
“Most doctors have never encountered this, so they’re reluctant to treat it,” he said.
Melville is comfortable performing the procedure.
“It’s 45 minutes of someone knowing what to do — and that can literally change their life,” he said.
And that’s exactly what happened to Anthony. The day after surgery, he was discharged to a hotel room with his wife — with a new, temporary trachea that allowed him to speak.
“It was amazing,” Gail said. She had not heard her husband’s voice since July.
His face was another welcomed sight. “I hadn’t seen his bottom lip for so long.”
Anthony could drink water and Gatorade again, swallowing on his own. Eventually, he began to eat soft foods.
At one point, Melville asked the Joneses to go out for some Texas barbecue to assess Anthony’s sense of taste after four months on a stomach tube. He ordered a pulled pork sandwich, chopped extra fine.
“Now, Anthony eats pretty much anything he wants,” Gail said. “He’s doing really well.”
Melville said that Anthony is functioning normally and has even returned to work.
While macroglossia is rare, Melville has received calls from COVID-19 patients in other states with the same condition. He is doing further research and looking into genomic tests to further understand treatment options.
“Patients don’t have to suffer,” Melville said.
Still, Anthony’s life hasn’t completely returned to normal yet. He still steers away from harder foods — and struggles to speak as clearly as before. Part of the problem is that his enlarged tongue pressed on his bottom four teeth, loosening them to the point they had to be extracted during surgery. He has also lost almost 80 pounds due to the hospitalization.
But Anthony said the weight loss has actually helped him feel more active now.
“I feel great,” he said. “I’m blessed to be able to talk and eat again. I’m not depressed anymore. I don’t have the trach. I don’t have the tube.”
The experience has changed his outlook on just about everything, he added.
“I don’t take life for granted,” he said. “Tomorrow is not promised. Today is not even promised. You’ve got to live your life to the fullest each day.”