“I’ve been fortunate,” Ted Knurek tells me. We are sitting in the lobby of the Marriott Hotel on Canal Street in New Orleans. This is good to hear, since following a battle with cancer and treatment for bilateral osteoradionecrosis, Dr. Hugo St. Hilaire and the team at NOLA Craniofacial had to completely rebuild his jaw.
“We gotta start with the beginning,” Ted says. He’s sharply dressed—a tan suit and lightweight sweater beneath—dressed for the warm climate he’s gotten used to in the years since he retired to Panama.
“I developed squamous cancer cells, two big nodes right here,” he points to his neck, and finally I see the scar that I’d been looking for. Given what I knew of the operation he’d recently endured, I had expected something much more dramatic. It’s there alright, but I have to remind myself what the man’s been through.
What is Osteoradionecrosis?
Ted offers his recent medical history in a nutshell: “My doctor in Panama, who studied at Tulane, he took out two big lymph nodes and the diagnosis came back that they were cancerous. So I did 33 treatments of radiation and 3 rounds of chemo in Panama at the Johns Hopkins’ hospital there, and about three or four years later I developed osteoradionecrosis.”
Osteoradionecrosis is a rare side-effect of radiation therapy used to treat cancers of the head and neck. It can take years to reveal itself, but the bone death in the lower jaw (or mandible), eventually results in pain and can lead to additional soft tissue damage. Read more about osteoradionecrosis.
“Osteoradionecrosis just keeps getting worse and there’s no cure for it. I was being treated with a constant diet of antibiotics to keep the swelling down… but from time to time it was really bothersome. They could treat the swelling, but they couldn’t treat the pain.”
“The doctors — I went to about three different specialists — one of them told me, ‘If you were my father I would tell you don’t do any operations. Just try to live the best life you can and go as long as you can…”
“I thought, ‘Well, sh**, I’m not going to try!?’ I can’t enjoy the rest of my life without trying!”
Osteoradionecrosis Treatment in New Orleans
Ted has lived a fascinating life — the good life — but that didn’t mean he was ready for it to be over. It’s worth getting to know him a little bit in order to understand his decision to have surgery to restore his jaw following osteoradionecrosis.
Ted served in the Army during the Vietnam War, and was in the Mekong Delta following the Tet Offensive. When he got home, he wound up caddying for pro-golfer Bob Goalby, who at the time was #4 on the money list. Later that same year, when the PGA tour stopped in Las Vegas, Ted decided, “This is my town!” and quit his job. He stayed in Vegas, wound up a blackjack dealer, and the rest is history.
Ted met his wife dealing cards to her (she was a stewardess) and they were together for 43 years until her death in 2014. Over the years, he worked his way into management and then casino development in Atlantic City, New Jersey, and eventually wound up opening up riverboats in Mississippi, Iowa, and for President Donald J. Trump in Indiana.
“I started doing some research,” Ted says of the decision to have surgery as part of his osteoradionecrosis treatment. “I looked at Sloan-Kettering, M.D. Anderson, and I found out that Tulane University had done this operation probably more than anybody else — Dr. Friedlander and Dr. Aslam and Dr. St. Hilaire —and they haven’t lost anyone on the table, which was good to know…”
“It was a calculated gamble, but after meeting them I had confidence. I told them, ‘Do your best docs… I haven’t been cheated.’ They said, ‘Don’t talk like that!’ but I didn’t need a pep talk.”
Composite Reconstruction Following Osteoradionecrosis
Dr. Reuben Urena of Hospital Punta Pacifica accompanied Ted to meet the NOLA Craniofacial Team and to meet Dr. Paul Friedlander. The scheduled surgery was delayed, however, when Dr. Friedlander saw something he didn’t like — Ted’s osteoradionecrosis had spread to the other side of his jaw.
“I brought my test results to Dr. Hugo St. Hilaire, and he said, ‘I hate to tell you this, but you’ve got necrosis on the other side,’ and so now this changes the entire plan.”
“This guy Hugo,” Ted shakes his head admiringly. “I don’t know where he came from, where he would have had enough time to learn all these things, plastic surgery besides being a dentist on top of it and 6 kids… I am telling you, his bedside manner comes right out of Marcus Welby.”
On October 10, 2016, Drs. Paul Friedlander, Riswan Aslam, and Hugo St. Hilaire were able to replace the diseased bone in Ted’s jaw with healthy tissue taken from his lower leg. Read more about “own” tissue microsurgical reconstruction.
Less than six months later, Ted is back in town for a checkup. He is by turns amazed and grateful. “I can’t say enough about these guys. They deserve to be praised, because they know what they’re talking about, and they’ve done it again and again.”
Recovering from Surgery for Osteoradionecrosis
Make no mistake, microsurgical reconstruction of the jaw following osteoradionecrosis is an intensive procedure and it takes time and dedication during recovery.
Pre-op includes six weeks of bariatric/oxygen therapy. The surgery itself can take up to 22 hours. Ted was kept in an induced coma for nearly a week in order to facilitate his recovery, and once he was out of the ICU, he was in the hospital for another 3 to 4 weeks. Once discharged, he required home health care for another month and had to work with a speech therapist.
He’s only just gotten the boot off (remember—they used bone from his lower leg to help reconstruct his jaw. He says, “They asked me yesterday, ‘Well, what do you think? Would you do it again?’ Well, in one way I had no choice, but yes. It’s worth it despite this ordeal because, you know, I feel a lot better.”
“I can’t do some things yet. I mean, I can’t chew yet, because I gotta get some teeth, but it is a life-saving procedure absolutely. Look at me—hardly any scars—and if you look at the x-ray you’ll wonder how this guy’s alive… so I can’t say enough about my doctors here.”
“Hugo and Dr. Friedlander and Dr. Aslam, these guys are different. They treated me like one of the family, and so here I am looking forward to eating steak and lobster for another 15 years or so.”