Natisha “Tish” Long experiences what are considered the most distressing sensations known to humans.
Since 2018, an unbearable “shocking, stabbing pain” ran through his face randomly, lasting from a few seconds to a few minutes each time.
“When I got my shocks, it was all in one, everything hit me,” she told the Post. Each second that passed seemed like an eternity. “It’s just there and you wait for it to subside. Sometimes I had to stop and wait for all that shock to be over before I could function.”
The mother of four suffers from trigeminal neuralgia, a neurological condition nicknamed “suicide disease” because of the brutality of its episodes.
“You can’t smile, you can’t brush your teeth, you can’t wash your face. Any little thing, the wind hitting it, it’s painful,” Long said.
It is not surprising that these episodes cause extreme emotional distress, anxiety, and depression. It’s not just a nickname: research shows that people with this condition are at increased risk of suicide and self-harm.
But experts are trying to move away from that nickname because there are treatment options that offer long-term relief. After seven long years, Long found his calling through a unique procedure in the world at University Hospitals in Ohio.
Tish’s story
“It was very, very difficult to function because I still had to work and be a mom,” she said. “I was working through the pain…I don’t know how I did it. When I look back on it, I wonder, how could I go to work for 12 hours and play this little game?”
His condition robbed him of both his signature smile and his bubbly personality.
“At work, people could see (the pain) in my face,” she said. They asked him what was wrong and the response was, “I had to mumble. I couldn’t open my mouth too much so as not to get triggered; I was trying to be as quiet as possible.”
“You go to sleep in pain, you wake up in pain. (My friends) always knew, Tish had to have her bag of pills.”
Tish Long
It all started with tingling in my upper jaw. She visited a dentist several times, who found nothing wrong. She was prescribed a new toothpaste and mouthwash, but neither helped.
The pain spread to his lower jaw and got worse. She saw a doctor, who suggested it might be facial neuropathy, a broader category of facial nerve dysfunction that can include numbness and dull, constant pain.
Doctors prescribed gabapentin and carbamazepine, which were initially effective.
“As soon as you wake up, you take your pills because you’re going to wake up with pain,” she said. “You go to sleep in pain, you wake up in pain. (My friends) always knew, Tish has to have her pill bag…if I forget, I’m like, I have to go home. You know, I can’t function.”
But soon her episodes became even more frequent and intense, shattering what little relief the medication provided.
Treating trigeminal neuralgia
The most common form of the disease occurs when a blood vessel presses against the trigeminal nerve near the brainstem. The pressure can damage the nerve’s protective sheath, causing it to send pain signals erratically.
This causes “shocking, stabbing, stabbing, stabbing pain in the face,” says neurosurgeon Dr. Michael Staudt, who treated Long at University Hospitals.
The medications Long was taking were originally developed to treat seizures, but they can also help calm overactive nerves and relieve nerve pain. Patients often have to increase their dose quickly to cope with worsening episodes, compromising with side effects such as brain fog, confusion and weight gain, Staudt said.
Still, the drugs “don’t work for everyone,” he said, with “at least 30 percent” not seeing lasting relief from the drugs. Long was one of the patients for whom the medications no longer worked.
So she underwent what is considered the standard for surgical treatment of this disease: microvascular decompression, which lifts this problematic blood vessel off the nerve using a small piece of sterile Teflon.
“It’s something we do all the time, but it’s brain surgery, it can take about three hours,” Staudt said. “The patient needs to be hospitalized for a few days.” Additionally, brain surgery carries risks, including infections and leaking brain fluid.
That said, it’s “actually curative. The pain doesn’t come back (in) about 70 to 80 percent of cases,” he says. For a time, this operation helped Long. She even stopped her medication.
“Then all of a sudden, one day, I was hit with this intense (pain) again. I mean, it was worse than the first time,” she said. “It was debilitating. I knew exactly what it was.”
She tried to get it back under control with medication for months, but “it was just unbearable, even with the medication.”
Tish’s world’s first procedure
After that first surgery, Long contacted Staudt to perform a radiofrequency ablation of the nerve. The procedure uses heat to damage specific nerve fibers that transmit pain signals from the face to the brain.
During surgery, a needle is inserted about 2 cm from the side of the mouth. Using X-rays, surgeons find the trigeminal ganglion at the base of the skull and doctors burn the nerve using radio frequency.
“When we damage it, it stops the pain signals. You usually feel numbness,” Staudt said. “It’s like taking novocaine for dental work.”
Unlike microvascular decompression, ablation is minimally invasive and takes only 20 to 30 minutes, with results evident as patients “step out of the operating room,” Staudt said. However, relief may be temporary. Over time, the nerve fibers can recover, allowing pain to return.
“On average, it (takes) between two and five years,” Staudt said. “I’ve seen patients for 10 or 20 years. I’ve seen patients come back after a month with pain. But on average it takes two to five years, and then they can come back and have another procedure.”
In December, Long became the first patient in the world to undergo trigeminal nerve ablation using a new system called OneRF. University Hospitals was the first health system to offer this technology.
Although the technique is “nothing new,” Staudt says, the machine allows for a new “streamlined” procedure.
The OneRF probe can map multiple nerve locations from a single insertion, rather than requiring surgeons to repeatedly reposition the needle.
After his treatment, Long felt immediate relief from the excruciating shocks.
“That same day I came home and it was like all numbness… Like you had your teeth pulled,” she said. Most importantly, “no shocks, no triggers, nothing there, nothing.”
Above all, she feels like herself again. “When I came back to work, everyone was like, ‘Oh, you’re smiling!’
Gn Health
