Suffering for 35 years with trigeminal neuralgia (TN) would dampen the hope of the average person desperately looking for a cure. But Fidelina Castaneda is not your average person. It was hope that kept her searching for treatments that would bring this non-cancerous condition to an end, and led her to the Tri-Cities Cancer Center (TCCC).
Trigeminal neuralgia, sometimes referred to as ‘tic douloureux’, is characterized by a sudden burning or shock-like pain that can come on at any time. It can be physically debilitating. Speaking through Aracelly Gomez, the Cancer Center’s Spanish translator, Fidelina said that the pain initially was a sharp poking sensation but later developed into “…a pricking sensation in my jaw. Over time, it extended to the right side of my face and up to the crown.”
It was hard to determine what brought on the attacks. Was it stress? Did the continuous winds encountered while she worked in the fields bring it on? Over time, something as seemingly gentle as a hair falling on her cheek could cause a flare up. Fidelina tried acupuncture, relaxation techniques, herbs and medications …nothing helped. Prescription medicines at first reduced the discomfort but their effects soon diminished. Adding to her distress was being told by one of her early primary care providers that “…things would only get worse with time.”
Then she visited Dr. Saul Valencia at Tri-Cities Community Health. It was here that her hope was rekindled. Fidelina’s face lit up when she related part of her discussion with ‘Dr. Saul’:
Fidelina: “I’m here so you can cure me.” ‘Dr. Saul’: ”I can’t cure this but I will send you to my friend, Dr. Jones, and he will cure you.”
Her first visit to Dr. Guy Jones of the Tri-Cities Cancer Center was scary. Why was she being sent to a cancer center? Was there something Dr. Saul didn’t want to tell her? And adding to her concerns was that on the day she first visited Dr. Jones there was a heavy police presence due to an inmate who was receiving treatment at the Cancer Center!
Dr. Jones spent two hours talking with Fidelina but ended the meeting with a message of hope and support. After a complete comprehensive workup that included an MRI, he prescribed a single session from the Cancer Center’s state-of-the-art oncology equipment. A beam of radiation was to be directed to the nerve associated with her pain. He also prescribed that a mask be made to hold her head in place during the treatment to assure that this nerve, and no others, would receive the radiation. The technicians with her during this one-hour session actually spent most of their time checking that everything was precisely lined up, answering her questions and making sure she was comfortable and relaxed.
Reflecting back on her experience, Fidelina said the TCCC cared for her as a person, not just another patient. The optimism and encouragement of the Cancer Center staff made it easier for her to be there. “With their support and the new technology, I felt things would finally be OK.” She noted that support from the Cancer Center continued even after the treatment when they let her keep the mask, telling her how it could be molded to the faces of her grandchildren for Halloween!
Fidelina’s TG flare-ups have become almost non-existent since the treatment. Her daughter, Lupe C. Mercado says “Mom is becoming more and more like the person we knew before this pain started.“ Lupe also noted that as her family and siblings learned more about TG, they became much more sympathetic to Fidelina’s suffering regardless of where and when it flared up. “Knowing more about TG made us much more empathetic towards Mom’s suffering, and helped us pull together.”
With the TG behind her, Fidelina is now making plans to visit relatives in Cuernavaca, Mexico. She is also anxious to share with others the importance of hope. “There is amazing technology today. Search it out. Stay relaxed, calm. If you love yourself, you have to do it; seek help and follow through. Do not lose hope.”