NEW ORLEANS -- She has searched for a doctor to cure her chronic headache pain her entire life, and finally found one in New Orleans who could cure her.
But her insurance company is not allowing the procedure.
Alicia Lissard-Easley is emotional and crying. For most of her 39 years she has lived in terrible pain. Now, the technology proven to make it instantly stop has to be taken away.
Her insurance company claims it's experimental.
"Are you OK?" asked the doctor as he turned off the temporary stimulator.
Earlier that day Lissard-Easley was pain free, finally getting the taste of a normal life because of a Medtronic Neurostimulator.
At the age of 4, she remembers debilitating headaches, throwing up and passing out. By her 20s, the headaches were worse and constant. Pain medication, migraine medication and injections did not work. Her career suffered. She constantly spent time in the emergency room and hospital.
"When you're in that moment, you really do feel like the pain's never going to stop and just don't know what to do to yourself to get it to go away," said Lissard-Easley, who said at times she thought she was going to die from the pain even though she knew better. Lissard-Easley grew up in New Orleans but now lives in the Pineville-Alexandria, Louisiana area.
Her personal life suffered as well. She canceled dates and faced social stigma. Because she looked healthy, no one could see the pain. Sympathy was rare.
"I had one really close friend, we actually lost our friendship after 17 years, who just didn't believe that I had these headaches," Lissard-Easley said.
After years of doctors, even at a leading U.S. headache treatment center, still no relief. Then Lissard-Easley found Dr. Erich Richter, an LSUHSC neurosurgeon at the Culicchia clinic at West Jefferson Medical Center.
"When you listen to enough people come in with the same story, that their friends don't believe, and it's exactly the same, you know it's hard to believe that they all went off and dreamed up, out of some psychological whatever, they dream up this story. And they describe it the same way, I think you know it's clearly a real problem that thousands and thousands of people suffer from," said Dr. Richter.
He said this is one of the most severe cases of headaches that he's seen. Not only is Lissard-Easley's pain excruciating, but also they happen frequently -- daily, in fact.
So Dr. Richter wants to use technology called peripheral nerve stimulation to help her. A small device, which looks like a pacemaker, is implanted in the body. Its mild electrical impulses block pain signals to the brain through wires that attach the device to the nerves.
The doctor strongly believes he has proof it will take away Lissard-Easley's pain because using nerve block injections on the suspected problem nerves, then wearing a temporary external stimulator for two weeks, instantly gave her relief.
"It's been almost 100 percent effective in controlling her problem," he said.
"It was really just amazing. I had such a small amount of headaches that it was, it's almost like you wouldn't even want to count it," said Lissard-Easley about the time the temporary device was hooked up to her scalp nerves.
"I hear such hope in her voice, a lightness that I haven't heard in so many years, and that hopefulness, that's so important," said her mother Donna Lissard.
But here's the road block. Normally Dr. Richter would disconnect the temporary external device then implant the permanent one. But insurance is denying Lissard-Easley, as it also did on the temporary device.
So as the temporary nerve stimulator was disconnected in the doctor's office, the pain instantly came back. After two weeks of freedom, Lissard-Easley is overcome with emotion as the pain returns.
"We know exactly what to do for her and we're being told no," said Dr. Richter.
"I know what it felt like to have it turned off. So that makes me scared, you know to have that again and not know that I'm going to get it back in a week. So I understand that people, you'd have to feel that way and know that you can have relief and be normal," said Lissard-Easley, sobbing.
What was called migraines in Lissard-Easley are caused by a nerve problem in her scalp. And neurostimulation therapy for nerves below the neck have long been FDA approved and used, and are not considered experimental.
"Peripheral nerve stimulation has been around for more than 40 years. It's clearly the standard of care. If you know that there is a neuropathic pain problem, if you know the nerve that is causing the pain, this is a standard of care, long-standing therapy with a lot of (science) literature behind it," said Dr. Richter.
Since January, Lissard-Easley and Dr. Richter have been in a back and forth letter-writing, phone-calling debate with Blue Cross Blue Shield of Louisiana, which is the claims administrator of her COBRA plan of the State of Louisiana Office of Group Benefits.
The company says it has denied all requests because the particular nerve that needs treatment in her case is not FDA approved and needs more studies, proving effectiveness and safety, comparing it to other treatment options. The case is now in the appeals process.
Since MedicalWatch contacted Blue Cross, the company is getting an independent, third party neurosurgeon to review the case. That could take up to 30 days. BCBS said it's not the ultimate authority in this appeal. The full statement to MedicalWatch is below.
Lissard-Easley was recently married to a man she calls an angel for understanding her condition. He has had migraines in the past too, but not as severe as her's. She wants children, but knows with pain she could not care for a child now. The implant, she said, offers her hope.
Again, BCBS is having an independent doctor of the same specialty review the case.
Lissard-Easley said the pain and nausea and vomiting are back and she can't eat or sleep.
Her doctor said studies show in two years, the implant cost will be paid for because there will be no more medications and emergency hospital stays.
For more information on Medtronic Pain Therapies, click here, or call 1-888-430-PAIN (7246). Ask for the "Pain Packet."
Statement to WWL TV by John Maginnis, Vice President Corporate Communications of Blue Cross and Blue Shield of Louisiana:
At Blue Cross and Blue Shield of Louisiana, all evaluations and decisions concerning patient health are made by physicians. In all cases, they are based primarily on effectiveness and safety, both short- and long-term.
There is not always consensus within the medical community on prescribed courses of treatment. That is why we sometimes supplement the expertise of our medical staff with that of external specialists.
In this particular case, we are using a process called specialty-matched peer review as we enter into the appeals process. This means we have engaged an independent board-certified neurosurgeon to review the recommendations of the patient’s physician, who is also a neurosurgeon.
This will be the first step in the appeals process, which began late last Thursday. The appeal could possibly go on to the self-insured group that covers the patient. Blue Cross and Blue Shield of Louisiana provides administrative services only to this group. Blue Cross is not the ultimate authority in the appeals process in this instance.
We are working hard to make this a speedy appeals process. We will be in close contact with the patient and the patient’s physician every step of the way.