How Suzanne Rowe Broke Free From the Pain of Trigeminal Neuralgia

As a nurse, Suzanne Rowe of Oklahoma City was familiar with pain, but the agony she felt in her face was unlike anything she’d even imagined. Her left side sizzled, as though her face was being stabbed by a sharp electrical knife thousands of times a day. She couldn’t go outside, where the breeze on her face would induce debilitating crises. She couldn’t eat anything but protein shakes and mashed potatoes without triggering unbearable shocks. Many days she could barely move. On her worst days, Suzanne couldn’t even spend time with her teenage son. Everything she did made the pain worse.

Suzanne had trigeminal neuralgia (TN), an intensely painful condition affecting the trigeminal nerve that carries sensory information from the face to the brainstem. Occasionally, the discomfort would ease; more often, the pain was so intense she could barely breathe, and her symptoms were dramatically worsened by her multiple sclerosis.

“When I say it was bad, I mean I couldn't eat. I couldn't talk. I couldn’t even have my hair on my face without it causing agony,” Suzanne said.

Although her initial episodes of trigeminal neuralgia were intermittent and relatively controlled with medication, in April 2023, the pain returned and never went away.

“I don’t cry easily, and I have a very high pain tolerance, but this pain brought me to my knees,” she said. “I went to the emergency room five times in one week. I had to type everything they were asking me about on my phone whenever the pain gave me five seconds of peace because I couldn’t even speak. They gave me fentanyl just to dull the pain enough to get me lucid. I live less than a mile from the hospital, but the pain made it the longest ride of my life.”

While admitted, Suzanne was placed on numerous pain medications, which fogged her mind. Not only was the pain still present, but her memory of those two weeks was essentially wiped out.

“I have a friend who would visit. She said it was so bad to see me in so much pain and screaming my head off. It’s probably a good thing I can’t remember that,” Suzanne said.

“Because all this happened right around my son's high school graduation, I felt horrible. It was his graduation, and his mom was in the hospital. To cry in front of your kids and have no control, to have them call 911 to get you to the ER, is not a good feeling.”

Even when she was released, Suzanne still couldn’t eat solid food. She was living on fentanyl patches to help manage the pain, but even that was only a temporary solution.

“I survived nutritionally on room temperature protein shakes, mashed potatoes and soup,” she said. “I had absolutely no quality of life. This condition is nicknamed ‘tic delareaux,’ but it’s also known as ‘suicide syndrome’ because the pain can get so bad, people have been known to kill themselves over it.”

Suzanne knew she had to do something to make the pain go away. She finally found hope when she met OU Health neurosurgeon Dr. Christopher Graffeo, M.D., M.S., assistant professor in the Department of Neurosurgery at the University of Oklahoma College of Medicine.

A Most Painful Condition

TN is a chronic disease characterized by sudden attacks of severe, lancinating, mechanically triggered attacks of extraordinary facial pain. It affects the trigeminal or fifth cranial nerve, which provides sensory innervation for most of the face and head.

The condition is more common among women and patients 50 and older and predisposes patients to very severe pain impacting one side of the face that feels like an electric shock — typically brought on by touch, even very gentle stimulation such as moisturizing, brushing your teeth or standing in the breeze.

“Trigeminal neuralgia is a surprisingly common facial pain syndrome that has been documented since the 1700s,” said Dr. Graffeo. “The causes are varied, but the most common cause by far is compression of the nerve from a blood vessel.”

Less often, autoimmune diseases like multiple sclerosis or invasive tumors may damage the protective myelin sheath that wraps around the nerve. This can make it easy to irritate the nerve, resulting in a very similar appearing trigeminal neuralgia-type syndrome.

“In some cases, one disease such as MS may sensitize the nerve to damage from a later, more typical neurovascular compression phenomenon—which is what we think was going on with Suzanne,” said Dr. Graffeo.

The first time Suzanne met Dr. Graffeo, she knew he was the doctor for her.

“He had on pink and red socks, a pink tie and a blue shirt, and I thought, ‘I like this guy,’” she said. “It’s not often you find a neurosurgeon with a personality, which helps. He had his sense of humor and hadn’t lost his bedside manner. He asked the right questions, and I knew he was the doctor I wanted.”

The Journey to Healing

For many patients with TN, treatment starts with medications like carbamazepine, gabapentin, or baclofen, which are anti-seizure muscle relaxant drugs that have some benefit for individuals with facial pain. Unfortunately, many patients don’t achieve complete relief, experience diminishing benefit over time, or have significant side effects that make medical treatment challenging. For those patients, procedures or surgery may provide more durable relief.

Perhaps the only definitive treatment for classical trigeminal neuralgia is an operation called “microvascular decompression,” in which the neurosurgeon finds the source of neurovascular compression—typically the superior cerebellar artery, or a branch of the petrosal vein—and moves it off the nerve, decompressing it from the vascular pulsations that have sensitized the nerve.

“In most MVD operations, the goal is to make it impossible for the artery to fall back on the nerve, typically by placing tiny Teflon pledgets in between the artery and the nerve, or suspending the artery to the dura using an aneurysm clip, a sling, or in extreme cases, a cerebrovascular bypass,” Dr. Graffeo said. “For patients with MS or another autoimmune disease as the underlying cause, there’s more of a role for ablative procedures before exploratory surgery is considered.”

These procedures are an important tool in the facial pain armamentarium, and although they are often less durable than MVD is for classical TN, they can still be quite effective in reducing or eliminating facial pain. This is particularly important for patients like Suzanne, where the more likely cause is not mechanical compression from a blood vessel, but antibodies attacking the nerve sheath itself.

The most successful ablative treatment is a high-dose radiation treatment called Gamma Knife, or stereotactic radiosurgery (SRS). This method uses a special radiation delivery system that is extremely precise to treat brain tumors, vascular malformations, and a variety of other brain abnormalities. Despite its name, no incisions are made; Gamma Knife is a minimally invasive technique, and typical treatments take just 1 to 3 sessions of about an hour each.

“You're essentially just blasting the nerve, and for most people with MS, it works really, really well,” said Dr. Graffeo. “Unfortunately, Suzanne didn’t get as much benefit from Gamma Knife as we expect to see when MS is the cause of a patient’s trigeminal pain, and so when things got worse after surgery, we had a very honest discussion about an exploratory operation,” said Dr. Graffeo. “At this point, Suzanne was extremely disabled by the pain—honestly one of the most sympathetic cases I’ve seen, she was absolutely miserable, and with no quality of life whatsoever. At one point, the pain was so bad she was back in the hospital for weeks. That’s what pushed us both over the line to decide that we were going to bite the bullet and try the operation.”

Complicated Problems Require Complicated Solutions

On Oct. 13, 2023, Dr. Graffeo performed the microvascular decompression surgery. Suzanne was still frightened by the idea, but she knew it was her last shot at meaningful relief, and Dr. Graffeo wasn’t going to give up on doing everything he could to try and help her.

The results spoke for themselves.

“I woke up, and for the first time in years, I had no pain at all,” she said. “I told the staff I was hungry, and they brought me a fish fillet and a brownie. It was the best stinking fish I had ever had in my life. It was the first solid food I had eaten in months.”

Suzanne now lives completely free of the torture that defined her life for years. She loves to eat apples and hard crusty bread, things she hadn’t been able to enjoy for more than six years. She lives to travel—something that was previously unthinkable.

“I went to Colombia, and I’m going back in the fall,” she said. “I never would have even tried to get on an airplane before. Now I can eat the foods I love, spend time with my son—I feel like I’ve gotten my life back.”

She also encourages other people with the condition to seek help and shares her story to give them hope that a pain-free life might exist for them.

“We have a doctor right here in the state who is a phenomenal man and surgeon,” she said. “Don’t give up hope. You can get your life back.”

TN is a relatively common disorder, Dr. Graffeo said, noting that he sees at least 2-3 patients a month with the condition.

“You probably don't know someone who has it, but you very likely know someone who knows someone who has it,” Dr. Graffeo said. “At some point in your life, you will cross paths with someone who's had this disease, or who has had a member of their family affected. Facial pain is a special interest of mine—I’m trying to bring that legacy and expertise to the people of Oklahoma. It’s a challenging disease to manage, but also one of the most rewarding. I remember when Suzanne woke up and said, ‘I'm cured. I've got my life back. This is the best thing that's ever happened to me.’ Stories like that are genuinely among the most moving examples of success in neurosurgery, and it’s such a privilege for me to get to care for folks like Suzanne.”

Learn more about our neurosurgery services and treatment, request an appointment or get a second opinion, or find out more about the neurosurgical team at OU Health by calling (405) 271-4912.