Bob and Kay Kielhofer
First Published Jan 31,2011
Bob Kielhofer still lives with painful episodes of trigeminal neuralgia
despite testing the limits of modern medicine and surgery
By Arline Phillips-Han
Marine Colonel Bob Kielhofer was in Saudi Arabia preparing for Desert Shield/Desert Storm when pain came from out of the blue—first so lightly it was easy to dismiss, then with the full force of classic trigeminal neuralgia—striking the right side of his face. That was 20 years ago, and the facial pain has continued to attack and retreat in a totally unpredictable pattern, sometimes in one sharp jab and other times in a siege of multiple “hits.” The pain hangs on despite a barrage of best-available medications and surgery.
Today at age 70, Kielhofer lives with the painful aftermath of medications too toxic for his body to tolerate, three brain surgeries that brought temporary pain relief along with serious complications, and surgical anesthesia that left him with a constant facial burning. He has aggressively sought excellent medical help and has undergone the same treatments that have helped hundreds of other TN patients gain significant or total pain relief. But in his situation, many “right things” went wrong, leaving him with complete facial numbness, the loss of abilities to smell and taste, frequent migraine headaches, dizziness and balance disorder.
“I discovered that total facial numbness, including my tongue and the entire inside of my mouth, can be a life or death matter,” he said. “A lot of abilities we take for granted, like being able to sense the difference between our tongue and the food we’re eating, have to be relearned. I don’t know how many times I’ve bitten my tongue or the lining of my cheek while trying to eat simple foods, and several times would have choked if not for someone performing the Heimlich maneuver. Eating is no pleasure when you can’t taste, smell or feel the food; now I eat simply to live.”
His wife, Kay, said he can no longer eat tough or rough meats like steaks, hamburger, even hotdogs, but can tolerate softer foods like meatloaf, mashed potatoes and yogurt. She keeps hand mirrors in every part of the house and the car, since Bob has to look in a mirror while eating. He also must use a straw to drink.
What isn’t wrong with Bob Kielhofer is his ability to confront tough challenges, as he did as a Marine pilot flying helicopters in combat missions during the Vietnam War. He demonstrates the grit to accept the hand he has been dealt and to move on with life.
“I’m perfectly fine below the neck,” he said. “I can do almost everything I want to do, but with greater difficulty.” He noted, for example, when ready to shoot a gun on the firing range with the Gator Skeet and Trap Club (a civilian gun club), he knows the recoil of the gun will bring an attack of pain, but he fires it anyway. With other activities, such as building wood furniture, reading military histories or exercise workouts, he often finds temporary distraction from the pain that never goes away. He has learned through repeated hard trials to purposefully divert his thoughts to something positive. He also finds relief through self-hypnosis, which he said requires some training.
Yet at the same time Kielhofer said his entire face is like a trigger zone. A light breeze across his face, the brush of tree leaves against his face, the dog licking his cheek, the gentle rub of a shirt collar or a light touch can bring on new pain. He no longer wears collared shirts, stays out of the wind, and is careful how he moves. He is especially cautious getting in and out of the shower. Once due to his balance problem, he fell out of the shower, bringing the curtain and rod with him as he fell to the floor.
In 1994 he began a medical diary with retroactive notes about the initial minor pains that struck erratically from 1991 until his first lengthy episode of stunning pain started in May 1995 and lasted three months. He stopped keeping the diary in 2002 after his third and final brain operation failed to end all of his pain and produced permanent negative side effects. After this third attempt at surgical correction, the neurosurgeon told him he had bruised the right optic nerve—an unexpected outcome that brought prolonged episodes of blurred milky vision that eventually cleared up to the point he could see well enough to read. Later, after examination by a neurological ophthalmologist, he was told he had corneal abrasion; some of the cells lining the back of the cornea had pulled away.
Day after day, he recorded the abrupt jabs of pain, tracking how many “hits” occurred while eating, talking, touching his face, shaving or brushing his teeth—no two days the same. Yet despite everything, he served in the Marine Corps with few interruptions until his retirement in 2002 at the age of 62. At that time, he and Kay moved from the bustling city of Tampa to a quiet farming area near Alachua in North Central Florida.
Looking back, Kielhofer said the earliest pains seemed to indicate a tooth problem, so he visited several dentists and at one point underwent a root canal. In early August 1995 the pains started again, and he visited a Tampa endodontist, who accurately diagnosed his problem as trigeminal neuralgia. The endodontist referred him to a neurologist, who first saw him during an interlude when he was pain free. But after a new round of “hits,” in December 1996, he went back to the neurologist, who prescribed Tegretol, the most commonly used medication for TN. The pain persisted, even when the dosage was increased to about 1200 milligrams per day. He suffered many adverse effects.
Meanwhile, on Jan. 15, 1998, pain began on the upper right side of his face, shooting up past his right eye, while he still had pain in the lower left side. He had TN on both sides of his face, which rarely happens. By this time he suffered 300 to 400 “jolts” of pain every day and was unable to eat or drink.
After a consultative visit with a Florida neurosurgeon, Kielhofer underwent microvascular decompression (MVD) surgery on March 2. 1998. Pain on both sides of his face stopped, and he was able to lower his dose of Tegretol, and then stop it altogether. This good outcome lasted a year until the sharp shocking pains returned and quickly grew more intense, this time on the left side.
Offered a choice between another MVD operation and the less invasive radiofrequency lesioning, which uses radiofrequency heat to destroy the nerve, he chose the latter. He received 36 applications of radiation at the maximum allowable dose. Facial pains returned the same evening and never stopped, prompting him to undergo brain surgery again.
On March 19, 1999 he was back in the operating room for a second MVD. This time, the surgeon found no evidence of a blood vessel compressing the trigeminal nerve (the classic problem corrected by MVD), and he opted to cut the nerve to relieve the neuralgia. The procedure stopped pain on the left side, while leaving the left side of his face and tongue permanently numb. He awoke with a headache worse than a migraine, and severe pains in the back of his head and forehead that lasted two weeks after he returned home.
By May, he was feeling stronger and generally better. At a follow-up visit at the hospital, he remembers the neurosurgeon saying his chances for having any more neuralgia were “very slim.” But the course of events proved otherwise. A year later he began to experience horrific pains on the right side of his face—different from those preceding the first two operations. Instead of the electric-like shocks, this time an excruciating pain came and remained for 30 to 45 seconds at a time. He described the pains “like having a dentist drill into a tooth without any painkiller, hit one of the large nerves and hold the drill there.” This happened 20 to 30 times daily.
On Oct. 2, 2000 he underwent his third surgery, this time on the right side. Again the surgeon was forced to cut the trigeminal nerve, leaving him completely numb on both sides of his face, and his entire mouth. Following the operation, he experienced a raft of complications—fever, headaches, double vision in his right eye, complete facial numbness, drooling, weakness, garbled speech, disorientation and dizziness. He had to gradually learn to speak clearly again. He was informed that about 1 percent of patients fail to benefit from a first-time MVD, and the failure rate jumps to about 10 percent when the procedure is performed a second time. The neurosurgeon conceded a great deal is unknown about trigeminal neuralgia.
Although many of his problems have stabilized, Kielhofer still receives medical care, including periodic acupuncture treatments that greatly improve his balance, a prescription pain-reliever for his migraine headaches, a soothing salve for his right eye and medication to help with his facial pains.
Although pain still strikes at inopportune times, he said the total facial numbness is the most difficult problem to live with. The numbness is irreversible, and the episodic strikes of facial pain also appear to be extremely, if not impossible to stop. He finds himself among a large group of trigeminal neuralgia patients for whom a cure is desperately needed. He shares his story in hopes that others might be spared many of the problems he has endured and still copes with.
His wife says it is an isolating disease. “You live with a lot of fear of what might happen next.”
Face To Face Web Interview with Kay Kielhofer