At the Bedside: Faye Sims lives with an incurable disease, but no longer has to live with the pain

In 2002, my grandmother, Faye Sims, now 76, experienced a sharp, debilitating pain in her jaw while at a café in Fairfield, Texas. She ended up in the emergency room, and doctors discovered she had multiple sclerosis (MS). The pain she was experiencing in her face was caused by trigeminal neuralgia, sometimes described as the most excruciating pain known to humanity. 

The cause of MS is not known. It’s considered an immune-mediated disease in which the body’s immune system attacks its own tissues. In the case of MS, the immune system destroys myelin, the fatty substance that coats and protects nerve fibers in the brain and spinal cord. The trigeminal nerve, responsible for providing sensation to the face, is one set of cranial nerves in the head. During the progression of MS, the disease can break down the myelin sheath, causing damage to the trigeminal nerve and resulting in intense, stabbing, electric shock-like pain in the face.

“It was the most intense pain I had ever felt; it felt like a sharp knife or a hot poker sticking into my jaw and not letting go,” my grandmother described. “At that moment, I was paralyzed with pain; I couldn’t move or even tell anyone what was happening.”

The following Monday, she visited her primary care physician, who recommended she see a neurologist. After treatments in Waco failed to ease her pain or restore her ability to balance and walk, my mother searched for a neurologist to treat my grandmother’s MS and bring her some relief. Her research brought her to UTHealth Houston, where she found John Lincoln, MD, PhD, Bartels Family Professor in Neurology and director of the Magnetic Resonance Imaging Analysis Center at McGovern Medical School at UTHealth Houston.

“Her biggest symptom we really wanted to address was the trigeminal neuralgia. For many patients, the pain can be debilitating. They can’t do anything because any stimulus on the affected side just causes intense electrical pain,” said Lincoln, a neurologist with UT Physicians. “There are several medications that can help with the pain, but she had already tried the medication route. Her MS was at the stage where it would continue to progress, and her pain was only getting worse, so we discussed interventional pain methods.”

Lincoln recommended gamma knife radiosurgery, a less invasive procedure that delivers precise beams of high-dose radiation to the trigeminal nerve so pain signals can no longer be transmitted — all with minimal effect on surrounding healthy tissue. While she experienced initial relief, the pain returned as her disease progressed, and she underwent two more gamma knife procedures. 

“While the presentation of trigeminal neuralgia is not uncommon with multiple sclerosis, bilateral trigeminal neuralgia, where pain presents on both sides of the face, is rare,” Lincoln said. “Mrs. Sims has reached the stage of MS where her symptoms are no longer progressing, so she is not getting worse, but she is never going to get any better. Since the damage to the nerves was already done, we just want to keep her as pain free as possible.”

Thankfully, research opened up new methods of treatment for my grandmother, and others like her, to live pain free. Lincoln continued to find outside-the-box approaches and another procedure, called radiofrequency ablation. The minimally invasive procedure uses heat to destroy a small portion of the trigeminal nerve responsible for the pain. The procedure stopped the trigeminal neuralgia pain, along with the daily doses of misoprostol and carbamazepine, which can both reduce the attack frequency and pain, and are commonly used to treat MS patients. She had almost given up hope for living a pain-free life, but Lincoln never gave up. She had the procedure in the summer of 2023.

“The pain went away immediately and has not returned. I have been able to live a normal life with my family and now my great-grandbabies,” my grandmother said. “Dr. Lincoln put me on the path to get here, and I couldn't be more grateful.”