"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 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. As blessed as I am to have had a successful ending with HFS, I understand 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."