POIPU — The fat leather seats will feel like they’re filled with razors. That’s the scariest part of the 10-hour flight: sitting down in the front cabin. Sitting down, period. There’s no comfort there, even with the priciest of tickets.
POIPU — The fat leather seats will feel like they’re filled with razors.
That’s the scariest part of the 10-hour flight: sitting down in the front cabin. Sitting down, period. There’s no comfort there, even with the priciest of tickets.
Because gravity, as Michael Webster puts it, is his enemy.
“I can’t sit through a movie,” said Webster — Web to those who know him. He recently tried to make it through “Guardians of the Galaxy” before having to get out of the theater with his girlfriend as quickly as possible to get back to his Lawai home where he could lie down. “I just could not get through it.”
So flying across the Pacific Ocean and half the Mainland is a bit terrifying. Maybe even more so than undergoing a surgery March 10 that is so close to the spine and so advanced that only four neurosurgeons in the U.S. offer it.
When the 41-year-old lands in Dallas, he’ll undergo a procedure to remove a giant sacral meningeal diverticulum. It’s similar to a Tarlov cyst, which is an abnormal spinal nerve root. Fluid that normally circulates through the sack connected to the nerve roots in his lower spine doesn’t exit and builds up, putting pressure on the other nerves.
“Intense pain” is how Webster described the sensation that shoots up and down his legs.
Carrying anything heavier than a half gallon of milk will put him down for two days.
Some days are better than others. Most mornings are better than afternoons. The more the day wears on, the more gravity takes its toll.
But there are days in which the mornings are just as bad as the afternoons, and times when the pain comes so quickly, “I have to lay down. Now,” he said.
But Webster considers himself lucky.
It was dumb luck he has the rare cyst, he said, but he feels lucky, too, that he worked as a CT technician in the emergency room at Wilcox Memorial Hospital for 14 years and Seattle hospitals before that. (Like many Kauai transplants, he started searching for a job here after vacationing). As a result, he had the medical background to know the cyst was causing his pain.
Often, when MRIs detect a cyst, doctors chalk them up as incidental finds because around 5 percent of the population have cysts without symptoms, according to the Tarlov Cyst Foundation. From that pool, about 1 percent experience symptoms, which can be confused with herniated or ruptured discs or degenerative disc disease.
“Can you live with the pain?” Webster recalled one doctor asking him when he sought help in Hawaii — which included two doctors on Oahu.
Taking medical leave in April, with the pain growing, he researched the topic himself. He sent his MRIs to Dr. Frank Feigenbaum in Dallas. Four months later, his phone rang.
“I think I can help you,” Feigenbaum told him.
“If I could have jumped up and down when he called, I would have,” Webster said. He added that of the four doctors who could have helped him, Feigenbaum is one of two taking new patients. “I was ecstatic.”
According to Feigenbaum’s research, of the 700 patients he’s treated, around 70 percent have experienced improvement in sacral and leg pain after surgery.
“It’s very gratifying, being able to provide those patients definitive treatment to get back to the life that they lost, because in a sense, systematic Tarlov cysts impact not only the patient, but their whole family,” the doctor says in a YouTube video explaining his procedure. “It’s a family disease.”
There is a risk of infection, nerve damage or no improvement whatsoever, but Webster isn’t focused on that.
“He has such a positive attitude,” said longtime friend Liz Foley, co-owner of La Spezia restaurant in Koloa, which is hosting a benefit drive to help with Web-ster’s expenses Monday from 5 to 9 p.m. “I get a headache and to me, it’s like, ‘I’m gonna die’ … I don’t think anyone can relate.”
The event costs $5 and will feature a silent auction that will benefit Webster. They’re still looking for auction items, but hotel stays are part of the offerings. One dollar for every drink or sandwich ordered from a special, light menu will go toward the fund, too.
“I think it’s really important for people to extend a hand. That’s what it’s all about, love and support,” Foley said. “It really is amazing how people show up for these things.”
Webster, who served in the Air Force from 1994-99, is insured. He’s left with a 10 percent out-of-pocket cost. He has to stay in the area for a week after the surgery, so a hotel stay after he gets out of hospital will come out of his pocket, too.
An athletic surfer, biker and swimmer, as well as singer in the band Battery Alley, Webster said he’s floored by the amount of support he’s received.
His girlfriend of nine years, Gabrielle Nelson, has been there every step of the way and will fly to Dallas with him.
Friends often stop by and watch movies with him when the symptoms are so bad he has to take to the couch.
“I woke up one morning and just felt overwhelmed with the outpouring of community and looking out for each other,” he said. “I woke up one morning and said to my girlfriend, ‘I don’t think this would have happened on the Mainland.’”
Even facing surgery, he insists he isn’t too nervous. Best-case scenario, he said with a smile, is getting back to the things he loves, like a long walk on the beach and working again.
“It’s a comforting feeling,” he said of the thought of returning to the ER, helping patients.
And after a year of uncertainty, it’s only a matter of getting there.
“I guess a little bit nervous,” he admitted. “I’m more afraid of the plane ride than anything else.”
