This story is part of the Facial Pain Research Foundation’s series “Facing My Pain,” which shares patient and caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients and practitioners. If you are interested in sharing your story as part of this project, please contact Hanna Shae Smith at firstname.lastname@example.org.
Kathleen remembers down to the minute when she began experiencing symptoms of Trigeminal Neuralgia. It was March 9, 2004, at approximately 7:05 p.m.
The pain began as unusual sensations across the left side of her face. She consulted her primary physician who referred her to a neurologist. This doctor initially thought Kathleen might have a brain tumor, but ruled out that possible source of her pain after an MRI. The neurologist raised Trigeminal Neuralgia as a potential cause, however, did not assign the diagnosis.
“I had no idea what that meant,” Kathleen says. “I had my own place, my friends, my social life. My son had just turned 19 or 20 at the time. … So, I was starting this second phase of my life with freedom. I was a single parent. I was moving on and boom. This slapped me in the face.”
As Kathleen’s pain increased, she was treated with medications including Zonisamide, Tegretol, and Gabapentin. These proved to be ineffective. Her employer set her up with a home office and while this was helpful for some time, her symptoms became so extreme that she had to take a leave of absence. Kathleen did not return to work, however, as her symptoms increased in severity, she moved to California to be with her parents.
Tossed between potential diagnoses, faced with increasing pain, and more medication, Kathleen was desperate for answers. In her corner, also seeking solutions, were her parents. Kathleen’s Mom and Dad took her to the Mayo Clinic, hoping for a diagnosis. However, the subsequent testing did not result in a clear diagnosis as she was told her symptoms were not consistent with Trigeminal Neuralgia. Kathleen experiences constant pain, has never experienced remission, and did not present as a straight-forward or typical diagnosis.
Kathleen and her parents came home from the Mayo Clinic, still without answers, and she returned to seeing her regular primary care physician, neurologist, and a pain management specialist. She elected to try a Gamma Knife Surgery in December of 2004, however, this did not provide relief and she sustained damage in her left eye.
“So, back to the drawing board,” Kathleen sighs. “I was under the care of my neurologist. We were doing MRIs left and right and nothing was showing.”
Two years went by.
“My pain is off the charts. I am sleeping 18 hours a day. Just sleeping the pain away,” Kathleen says. “My parents do everything for me. Everything. Chauffeur, cook, clean.”
Kathleen found a pain management team who was more suited for her needs, and began attempting nerve blocks, however these treatments were not successful. The team decided to put her on opioid medication and Kathleen finally began feeling relief.
“It was like night and day,” she says. “I can stay awake. I can actually do my own laundry. I can go to the grocery store with my mother. I was able to become alive again. I became independent again, and seven years after TN entered my life, I moved out of my parent’s home”
Her journey to find permanent solutions continued, however, and she persisted in seeking answers from different doctors and potential medical treatments. She tried acupuncture, Botox, massage therapy, chiropractic care, physical therapy, and biofeedback. None of these options were sustainably successful, however. Medication was the only thing that could touch her pain.
In 2015, Kathleen read about a neurosurgeon in California who specialized in Microvascular Decompressions. Although Kathleen underwent multiple MRIs in the past that had not revealed vascular compression, one of the causes of trigeminal nerve pain that MVD can correct, the surgeon agreed to review her medical records and see if she was a surgical candidate. She was shocked when he called her shortly after and said he believed he saw a couple compressions. The process with was thorough and extensive, Kathleen says. She was required to stay in California for three weeks for monitoring – one week prior to the operation and two after. So, Kathleen and her parents made the trip where they prepared for her operation.
The surgeon repaired six compressions, however, the operation did not relieve Kathleen’s pain. Before going into the operating room, the surgical team helped Kathleen manage her expectations around the low chance of success for her case with the operation. I knew the chances of success were low, her surgeon was very clear and honest about that. Still, she is grateful that they tried.
“I came out of surgery the exact same way I went into it. I had no lingering effects. Nothing was damaged. I give him kudos that nothing happened to me,” she says. “I knew that this was going to be my only opportunity to do this surgery. The stars had lined up. There had been so many things that needed to go just right. So, I took it. And I knew the chances were low, but I knew I would be sorry if I never tried. I remember somebody told me in one of the [online] groups: Never give up, keep looking. That kept sticking with me. … I don’t regret it at all.”
Six months after the surgery, tragedy struck when Kathleen’s father passed away. She did not know at the time, but he was battling his own illness throughout the MVD operation.
“He took the best care of me,” she says. “Come to find out a month later, he had cancer. He knew he was sick when I was going through my surgery, but he did not tell me. And there he was.”
Kathleen’s mother also passed away in April 2021.
Her niece has been a compassionate, supportive presence in Kathleen’s life, always rallying around her aunt. Kathleen has a son who is engaged, and they are expecting her first grandbaby. Friendships can be difficult, she says, and Kathleen is home bound most of the time due to her pain.
“For the last 17 years, I have just had to stay close to home,” she says. “There is no room for socializing. This illness doesn’t leave time for that. It didn’t allow me to go out and meet people. It’s very isolating.”
Kathleen has joined online Facebook groups where she benefits from reading posts of others who are going through her same situation. Being able to provide support to other people impacted by TN provides a sense of fulfillment for Kathleen and she finds meaning in being able to give someone a helping hand.
“That’s what my job at Boeing was, it was helping people with accidents. So, I do like helping people,” she says. “I’ll put something out there and give some advice hoping people can get help from it.”
Kathleen approaches each day at a time. Although she knows her life will never be what it was and there are uncertainties, she looks inward for the power to keep going day by day.
“Nothing is going to change. I will never get back to the life I once had. That’s never happening, and I’d already accepted that years ago,” she says. “This is my life, and I’m thankful for what I have. I’m thankful for the pain relief I do have. Kathleen has learned how to better control and manage her pain over the last 18 years. Even though she continues to live with facial pain, some days are better than others.
I’m thankful for everything I’ve got. I’m luckier than a lot of people. Once my pain started getting under control, I realized that I have to have a positive attitude. I couldn’t live negatively because that would get me nowhere.
For now, Kathleen takes it day by day, and when the day comes that a cure is found, you can bet she’ll be one of the first lined up, waiting for her chance to be pain free.
Hanna Shae Smith is an award-winning journalist and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she is the manager of the SOARING into Strength Positive Health Initiative, studies psychology and global health at Arizona State University, and is a research assistant studying pediatric behavioral health at the Arizona Twin Project.