Sadly, it has been impossible for Anthony Jones to talk or eat. For that matter, he has been unable to even close his mouth.
After several months of intubation battling COVID-19, Anthony had been diagnosed with Macroglossia – an extremely enlarged tongue that makes swallowing and talking completely impossible.
Anthony had to spend 12 hours a day laying on his stomach for three weeks to help repair his lungs. While treatment measures restore his health and breathing, however, his tongue remained enlarged, having his tongue stretch past his lips and chin.
None of the physicians in his hometown, Lake City, Fla., could diagnose or health Jones’ tongue.
The doctors were shaking their heads in disbelief, his wife Gail, expressed.
They were able to discover a surgeon more than 800 miles away, in the city of Houston, Tx – that Anthony started to have a gleam of hope for a better future, one where he could smile again.
After coming home from a summer shift, as a worker at a private ambulance service, Anthony began experiencing high fever and body aches. By July 2nd he felt so ill that he went to the emergency room to be tested for COVID-19.
His results came back positive, and his symptoms continue to worse; by July 8th, he was back at 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 on him.”
She had no idea that his tongue had swollen so big, it extended more than 3 inches outside of his mouth.
Three weeks later, during a FaceTime call is when Gail learned of her husbands’ condition. He had been released later that day, with his tongue still being enlarged. The doctors had no answers on how to help him.
Gail began starting to feed him through a tube because there was no way that Anthony could swallow. Every 4 hours, she had to wrap his tongue to prevent it from becoming cracked or too dry.
Gail had just recovered from renal failure just a couple of months earlier. She was back at her job at mental facility for only a short time before she had to take medical leave to take care of her husband. She held on to her beliefs and faith that she could find a solution for her husbands’ predicament.
Upon visiting a surgeon that specialized in ear, nose, and throat, that only added more to their frustration.
“He told me that he didn’t know how much to cut,” said Anthony. Nor could the surgeon promise to preserve his patients sense of taste or his ability to speak.
Anthony fell to tears on his way home from the appointment, imagining a life of feeding tubes and written communication. “I guess I’m better off dead.” He thought.
He then asked Gail to take him to his parents’ house. He then asked his father, Leroy Jones, to come outside and pray with him.
While they were there, his mother, Mary Ann Jones, a retired nurse, Googled his condition. She got a hit back for a Houston Doctor, Dr. James Melville. The Doctor of Dental Surgery and associate professor and oral surgeon at UTHealth School of Dentistry has experience with macroglossia in the Journal of Oral Maxillofacial Surgery in 2017.
“it is a relatively uncommon condition,” Melville stated. “Only a rare subset of people develops massive macroglossia.”
Dr. Melville previously treated a patient who developed the condition in Houston after she was too intubated a few years back, He was able to successfully treat the woman and a second patient with the illness. Both patients were able to recover their ability to taste food and talk.
Mary Ann had 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 pleased with him to take their case on.
Melville responded back in a matter of minutes.
“She told me his story,” recalled Dr. Melville. “I asked if she could send pictures. I told her, ‘I can help right away. I can give him a better quality of life.”’
Later that evening, Gail sent Dr. Melville photos of her husband’s condition.
“I knew change was coming.” Anthony expressed. “I knew it would be different because someone knew what exactly was going on and how to help.”
Gail worked closely with a case manager to get insurance coverage for the out-of-town expenses for the trip. Along with the Jones family and their church congregation pooling resources together to cover expenses for the trip.
On Oct.13, the jones family to flight to Houston; two days later, Anthony was all prepped and ready for surgery.
Dr. Melville performed a partial glossectomy (the surgical removal of a portion of the tongue). These are often the part of treatment for tongue cancer.
By preserving the important parts of the tongue, he is able to preserve taste and speech. Often, other surgeons are too concerned with negatively affecting one or the other and steer clear from operating on the tongue in general, Doctor Melville explained. He also added, “Most doctors has never encountered this, so they’re reluctant to treat it.”
The day after the surgery, Anthony was discharged to a hotel room with his wife Gail – with a new, temporary trachea that allowed him to speak.
“It was amazing,” Gail expressed. She had not heard her husband’s voice since last July. His face was also another welcomed sight. “I hadn’t seen his bottom lip for so long.”
At this point, Anthony could even drink water and Gatorade again, swallowing on his own and eventually began to eat soft foods.
On one instance, Dr. Melville asked the Joneses to go out for some Texas BBQ to assess Anthony’s sense of taste after nearly 4 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.”
Dr. Melville said that Anthony is functioning normally and has even gone back to work.
While Macroglossia is rare, Melville has received calls from COVID-19 patients in other states that shared the same condition. He is doing further research and looking into genomic tests to further understand treatment options.
Still, Anthony’s life has not completely gone back to normal as of yet. He still stays away from hardened foods and doesn’t speak as clearly as he once did before. Part of the issue is that his enlarged tongue pressed his bottom four teeth, loosening them to the point they had to be extract during surgery. He also lost almost 80 pounds due to his long stint in the hospital.
Anthony did express that the weight loss has actually helped him feel more active and on the go.
“I feel great,’ Anthony 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.”
He also added that the experience has changed his outlook on everything.
“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 and every day.”