In 2022, Tommy Ogura started to experience pain on the left side of his face. Over time the pain became unbearable, and Tommy began to research his symptoms to find an explanation. He discovered his symptoms were a lot like those of trigeminal neuralgia (TN) and he found the Facial Pain Association (FPA). On the FPA’s website, he reached out via the Custom Help form, where he received support from Regina Gore, the FPA’s Volunteer and Database Coordinator. Not only did Regina provide valuable resources but also connected him with Susan, a Support Group Leader in Northern California where Tommy is located.
It was in Susan’s Support Group that Tommy first found a sense of connection and understanding. During their discussions, Susan encouraged him to explore the possibility of getting an MRI. This advice proved crucial when Tommy’s MRI revealed a brain tumor that required surgical intervention.
Following this discovery, Susan referred Tommy to Vince Holtmann’s Tumors and Facial Pain group, which, despite being based in St. Louis, offered virtual meetings that eliminated geographical barriers to support. Speaking with Vince, Tommy felt a sense of relief. He was able to hear firsthand from someone with a similar diagnosis, and he appreciated the opportunity to connect with someone who had found success after undergoing a surgery like the one he was contemplating.
Tommy expressed his gratitude, stating, “It was helpful to find someone who could relate to my fears and worries. It was reassuring to hear from another person who went through the journey of surgery and is in a better place.” Despite the lingering concerns about pain and the potential timing of his surgery, Tommy felt encouraged by Vince’s story of resilience.
Tommy’s brain tumor was causing facial pain that over-the-counter medications couldn’t alleviate. Dr. Michael Lim, FPA Medical Advisory Board Member and Professor and Chair of the Department of Neurosurgery at the Stanford University School of Medicine, subsequently performed surgery to remove it. The surgery resulted in minimal pain for Tommy today, although he does have some ongoing sensory issues.
When asked if he still experiences facial pain, Tommy replied, “Yes, but it’s different from what I used to feel. I have a slight tingling on the left side of my cheek, which is manageable. I’m focusing on tuning it out without medication.”
Tommy’s journey with the FPA was not just about seeking help; he also wanted to give back to the facial pain community. “I wanted to continue to be a part of the community to help others and demonstrate success. I received a lot of support from the FPA community, and now I want to pay it forward,” he shared. He emphasized the importance of community and support, saying “you are not alone” is a sentiment he deeply believes in.
Through the FPA, Tommy found a wealth of resources and support systems that significantly aided his journey, including annual conferences and group meetings that highlighted the importance of mutual support in relationships coping with facial pain. “Seeing how couples fully support each other and live well with facial pain eased my concerns about how this would affect my own relationships,” Tommy remarked.
Tommy expressed a desire to take on a volunteer role that utilized his computer skills, finding purpose in serving others within the community. Regina Gore appreciates Tommy’s commitment to giving back, stating, “We are grateful for Tommy’s volunteer work as a Google Analytics Assistant. He is helping with our marketing and communications efforts, ensuring we reach those who need our resources most.”
While Tommy wishes he had not encountered facial pain, he has found fulfillment in the support and solidarity of the FPA community. His story serves as a powerful reminder of how connection, understanding, and mutual aid can transform solitary experiences into shared journeys, fostering hope and resilience among those navigating similar challenges.
