In honor of our 30th Anniversary, we spoke to founder Claire Patterson
FPA: When did you first start having symptoms and what were they?
Claire: Like most individuals with trigeminal neuralgia (TN), I can still remember my first excruciating TN attack in 1976. One morning while putting on my makeup I touched the tip of my nose and a bolt of pain passed through my check. Although the pain was brief, it was not like anything I had ever experienced. Prior to this, I had two years of a dull toothache-like pain on the left side of my face. After many x-rays and visits to the dentist, I was assured that the pain was not a dental problem. Today, this pattern of starting out with vague symptoms before developing into the sharp, piercing attacks of TN is called pre-trigeminal neuralgia. As the attacks became more intense and consistent, a diagnosis of TN was easily confirmed by my internist.
What treatments did you receive and were they successful?
The first few years of my TN journey were managed by medication. As the attacks became more frequent and intensified, additional prescriptions were added to the mix. Over time, this cocktail of medications became less effective and the side effects more debilitating. It was evident that medical management was no longer doable, and I was eventually hospitalized in a university teaching hospital. While there, the only surgical option offered to me was to sever the nerve. In the meantime, my internist had read about a new neurosurgical procedure being pioneered by Dr. Peter Jannetta – the microvascular decompression (MVD). Luckily, I chose to decline severing the nerve, left the hospital, traveled to Pittsburgh for a consultation with Dr.
Jannetta, and had an MVD on December 1, 1987. I have been pain-free ever since – 33 years!
What prompted you to start the Trigeminal Neuralgia Association?
Before being discharged following my MVD, I met another TN patient who had also never talked with anyone else with TN. How different my TN journey would have been if I had been able to connect with others like her who had the same disorder. Being in the company of others to share information and experiences provides the unique opportunity to validate what you are experiencing. When I mentioned to Dr. Jannetta that there should be an organization for people with this disorder, his answer was simply “Why don’t you start one?” Who could decline such a request from the doctor who had given you back your life?
How has the Association grown over the years?
My initial vision of the organization was one whose primary focus was to provide information and support to those afflicted with TN and to their families. Once TNA’s nonprofit tax-exempt status was secured, I enlisted Dr. Jannetta’s support to chair and appoint a Medical Advisory Board (MAB). His enthusiasm and support were indeed inspiring. Many of the key specialists in the treatment of TN that he appointed are still actively involved with the Association today. Dr. Jannetta’s leadership and MAB participation established the medical credibility that was so vital to the growth of the Association. A great deal of progress has been realized since TNA’s founding in 1990, when the national office consisted of a wall phone and my kitchen countertop in Barnegat Light, NJ. At that time, our mailing list consisted of 13 individuals and the operating budget was less than $500. Yes, we have come a long way! As the Association has grown in its ability to serve those who turn to us for help, it has also achieved increased awareness and recognition by the medical/dental community for TN and neuropathic facial pain disorders. TNA/ the Facial Pain Association has grown from its humble beginning to become a world-wide resource for information and support. Technology has certainly changed the operations of the Association; however, its mission remains unchanged and will continue to be the guiding light for the challenges faced both now and in the future.