Hi! My name is Kerrin Heaney, and I am 32 years old from Long Island, New York.
I was diagnosed with atypical trigeminal neuralgia a little over six years ago. I have it primarily on the right side but also on the left side. I first started experiencing pain in March of 2015 with a sharp stabbing through my right eye. After many scans and quite a few doctors, I was finally diagnosed with trigeminal neuralgia. As the pain was so severe, I went right for the microvascular decompression. When I woke up still in pain, I was fearful it did not work, but I tried to be optimistic. I was also quite numb along the right half of my head, but after some time, the feeling came back except for the area from my cheekbone to my jaw, and still to this day, I have sensory loss on the right side of my face.
Unfortunately, as the weeks went on, the pain continued, and my fears were correct— the surgery was unsuccessful. My surgeon at the time did not have experience with other treatments, and I did not want to be his guinea pig, so I sought another opinion. After multiple physicians and what I like to call a rollercoaster of events, I had been through a lot. I had tried countless medications, outpatient procedures like injections and nerve blocks, and too many doctors and teams telling me they just cannot help me. I felt pretty defeated after a while. But looking back, yes, some doctors were completely rude and not helpful, but some were just frustrated that they couldn’t help, so the only option was to turn me away. For that, I can’t be mad because it wasn’t their fault that I am an “interesting” case, as most physicians called me.
At the time, I was quite upset, but looking back, I had to get through those people to get to the ones that truly wanted to help. I ended up having a second microvascular decompression with a great surgeon with whom I felt super safe and comfortable. Unfortunately, that one did not “take” either. This time however, he did not want to give up and gave me more options. We tried more medications together and Gamma Knife radiation, but alas, nothing seemed to help. As he is a surgeon, and I was out of surgical options, I had to find another doctor but always stayed
in touch. My pain management doctor and neurologist that I settled on have become my team that listens to me and works with me. They are the backbone to my disorder, and even though it took a while to find them, and I have had my share of ups and downs with them, they haven’t given up on me.
Struggling with this disorder all these years, I have learned that you need to find doctors who will listen to you and hear what you want to do. I learned that I will always have this and be in pain, so how can I make it better, and what do I need to do to live with it in a healthy way.
Learning to find balance with this disorder has been difficult, but when it hit me, I realized I had to learn to live with it. I just had to. I wake up and go about my day, and sure I have some bad days where I can’t get out of bed, and that is my reminder that I need the day to rest my body and mind, so I take those days. But when the pain is tolerable, I get up and go about my day.
I work in cancer research and enjoy what I do. It was almost a blessing starting to work in the healthcare field prior to getting this disorder because when I was diagnosed, I realized my life could be worse. I don’t consider myself “sick” because of what I do and where I work, so yes, it is a disorder, and yes, I struggle in pain every day, but I try to hide it because I know things could be worse. I also know everyone is battling something, so never judge people because you never know what is going on, and some people are good at hiding what they are going through. It may not be the best approach, but my closest family and friends know what is going on with me, and I know I can reach out when I need to, but most of the time, I go about my day as normally as I can.
When I am not working, I love to cook or bake or binge the latest shows. I also love meeting family and friends out or at their places to catch up or have a fun game night. It takes time, but I eventually found a good balance between life and this disorder. Sure, the pain is still there, but I do have a job and family and friends, and I am able to balance it all in a healthy way because I have learned when I need to take time to rest and
when I can push myself just a little bit.
For newly diagnosed people, it takes time. It sucks to hear that, but it does get better. I have had countless procedures, surgeries, medications, and doctors who have all failed me. While I might still be in pain, I have been able to find balance in my life. I call my journey a roller coaster because that is exactly what I went through and still go through. Now, six years later, I can look back and realize that I went through so much because I had to try everything to see if I could get better. I am still playing with medications and trying to find new ones, and my doctors have ideas on more outpatient procedures if it comes to it, but the pain is tolerable. The hardest thing, and I struggled with it too, is acceptance. Once you accept this condition, then find the team of doctors you are comfortable with, you will be able to balance this ever-changing disorder with life.