In Our Own Words is a new way for members of the facial pain community to share their story. Whether you had a successful surgery, found a medication that works for you, or you are trying to find a treatment option that helps lessen your pain — wherever you are on your facial pain journey, we hope these stories give you faith for the future.
My name is Jennifer Dinet, and I have trigeminal neuralgia. I was first diagnosed when I was 25 years old, and it completely changed my life. I had to adjust to a new normal, while my hopes, dreams, and aspirations felt like they were being stolen from me. I was excited to start my first full-time elementary school teaching position. The month I signed the contract I began having sharp shooting pain from my temple to my jaw. After brushing it aside and thinking it was a crazy migraine symptom or due to stress, my mom finally convinced me to go to the doctor. I was very fortunate because I was correctly diagnosed by my family physician during my first visit regarding the pain. He admitted that he didn’t know much about it and was confident in my diagnosis but wanted to send me to a neurologist just to make sure. Over the next year I tried different medications, all of which did not help with the pain or gave me debilitating side effects.
The next option he gave me was microvascular decompression surgery (MVD). By this point I was so desperate to have the pain gone, I didn’t really care to ask many questions. I woke up with worse pain than I had prior to surgery. During my recovery, the doctor who performed the MVD said that his surgeries ‘would not fail’ and that the pain must all be in my head.
Confused and frustrated, I knew this was the time that I needed to advocate for myself. I found a support group that was about an hour away and attended some meetings; I also found some people online that were going through similar struggles. Through the meeting, I was introduced to the doctor that performed my second MVD surgery. Although this second surgery was not a success, I finally had a doctor talk to me like I was a human. After the surgery I went to pain management, where I felt like I was just a number and was not taken seriously.
I took action and wrote a letter explaining all the reasons I would not be returning to their office.
By this time, I realized that I could no longer be the teacher that school kids needed, so I resigned from my teaching position. I needed to apply for disability benefits since my pain was increasing and unpredictable from hour to hour. I applied and was denied five times. I completed every task and form they asked for and it still wasn’t enough. I know I had to fight for myself to get what I needed. I contacted any doctor I had seen over the years and asked for all of my records and asked my current doctors if they would write letters to help explain my diagnosis. I even asked my colleagues, training coach, and boss to write letters explaining how my pain affected my work performance.
I did everything I could think of to make them understand my situation; they did not.
I finally called a disability lawyer and was granted full SSDI the following year. I am still searching for different doctors and resources that can aid in my search for less pain. I have consulted different doctors from across the country to inquire about new techniques or treatments that could benefit my personal needs.
By advocating for my own health, I have been able to keep the pain somewhat manageable with medication and different therapies.
After 14 years of searching for answers, I am eager to help others struggling through their facial pain journey and help them advocate for what they really need.
