Danielle Clements
The FPA’s 35th Anniversary Special Correspondent
“Can anyone see it happening? Is it worse than yesterday? How noticeable is it? Don’t smile, it looks worse when you smile…“
These are some of the thoughts filling my mind over the course of my struggle with hemifacial spasm (HFS). It was April of 2023 when I felt a mild twitch in my right eyelid. Fast forward a couple of months, and the simple eye twitch graduated into a full-blown spasm around my eye. A few months later still, and the muscles of the right side of my face began to be affected: my cheek, the top of my lip, the side of nose, sometimes extending across to my right ear. It was hard to concentrate on anything else, hard to see anything in the mirror but the mild asymmetry glaring back in my reflection. So began a physically and emotionally exhausting journey with HFS.
I am a very active person. I love to exercise and sweat — it grounds me and keeps my body and mind strong. The harder the challenge, the better. And despite my love of a good challenge, the fight with HFS was truly a test of grit. Each day I woke with the same spasms I fell asleep with, would take a muscle relaxer prescribed by my neurologist, and head to the gym. There, I would sweat and push through the side effects of the medication. During each virtual meeting filled workday, I frequently held the side of my face to try and stop the spasms.
I became obsessed with finding a solution, making multiple physician appointments: primary care, eye doctor, neurologist, movement disorder specialist, and even an ENT as I grasped at straws for an answer. I was prescribed a pharmacy’s worth of medication to try to manage the spasms, but no resolution seemed evident. After a few particularly rough days, my husband did some sleuthing. “This is the doctor, I know it,” he said, showing me Dr. Raymond Sekula’s online profile with Columbia University. Amazingly, one phone call later, I had an appointment. By then, I had undergone two rounds of failed Botox and was truly disheartened. Within minutes of examining me, Dr. Sekula said, “You have a hemifacial spasm, I see it on your face.” I will never forget that moment. A rush of emotions overtook me. Crushed to have confirmation that it was visible (albeit to an expert); hopeful that he would solve it. That was the day I learned about microvascular decompression (MVD) surgery.
The idea of MVD, the thought of having a hole drilled through my skull, was something I struggled to overcome. Despite the almost paralyzing fear, I underwent MVD surgery and experienced exceptional care at NY-Presbyterian under Dr. Sekula and his team. Within three weeks of surgery, the spasms disappeared. The endless energy I expended every day worrying was suddenly replaced with a sense of gratitude so great that my heart could burst. Eventually, I stopped counting the days since the last spasm. I no longer remind myself not to smile, and I recognize every single day as a gift – a gift that led me to the Facial Pain Association. As blessed as I am to have had a successful ending with HFS, I understand firsthand how lonely it is and felt compelled to seek out ways I might help another person feel hope. I can never repay Dr. Sekula and the care team at NY-Presbyterian, but if my story can help one person challenged by HFS to feel hope, to be brave, and to remember their smile is worth it, it will have been a fight worth fighting.
Danielle is our new 35th Anniversary Special Correspondent. She will be conducting interviews with various members of the facial pain community. Look for her “5 Questions for 35 Years” on our social media and website soon!
