DEBORAH's
Story
My Journey with Trigeminal Neuralgia: From Pain to Healing
It all started after a car accident in 2019. I saw a chiropractor to address some lingering pain, but later that night, I woke up with an excruciating sensation in my lower jaw. It felt like a cattle prod was being shoved into my face, sending electric jolts up my face into my eye. The pain was unbearable, and no amount of morphine in the ER could provide relief. That night, I was diagnosed with Trigeminal Neuralgia (TN).Trigeminal Neuralgia is often referred to as the “suicide disease” because of the unimaginable pain it causes. I tried medications, but they left me feeling like a zombie.
Thankfully, I found Sheena, who helped me discover ways to manage the pain. For a time, I experienced an 8-month reprieve, but then the attacks returned—and they were worse than ever. The pain was so intense, I would fall to my knees and scream. I began to understand why this disease has such a devastating nickname. At my lowest point, I contemplated ending my life.What kept me going was my family. I couldn’t bear the thought of leaving them behind. One night, while battling an unbearable attack, I watched the movie The Passion of The Christ. The scene of Jesus enduring the brutal beating and crucifixion struck me deeply. If He could endure such pain, I thought, I could find the strength to endure mine.
Soon after on April 8, 2021, I had Microvascular Decompression (MVD) surgery, and for a while, it felt like a miracle. The pain disappeared, and I finally had relief—until 3-4 months later. Pressure headaches started creeping in with a runny nose, I couldn’t bend over without feeling like my head might explode. At first, I felt it was a horrible sinus infection. My neurologist offered injections, but they weren’t helping, and my neurosurgeon wouldn’t return my calls.
Desperate for answers, I turned to Sheena, who introduced me to Chelsea. Chelsea shared her own experience after MVD surgery and the treatments that had helped her find relief. After insightful discussions with both Sheena and Chelsea, I decided to pursue care with Dr. Michael Lim. After a telehealth appointment with Dr. Lim and an MRI, I flew to California for another surgery on August 8, 2022. Dr. Lim removed the metal plate from my skull, replaced the opening with bone mesh and addressed two CSF leaks and a hole in my skull. This was the turning point.
Today, I’m thriving. I have my life back—a life I once thought I’d lost forever. Trigeminal Neuralgia taught me resilience, faith, and the importance of seeking out the right care. If you’re battling this disease, know that you’re not alone, and there is hope. Keep fighting.You’ve got this.
phoenix's
Story
I still vividly recall the first time I felt a strange slight shooting sensation traveling down the right side of my face and jaw. It felt like the electric shock I remembered when I would touch the prongs of a small nine-volt battery with my tongue to complete a childhood dare. Everyone said it was just stress and that I needed to take some time off to relax. I was hopeful they were right. Any amusement and curiosity abruptly vanished when the mini zaps increased infrequency and intensity and didn’t relent no matter how much sleep I got
or time off I took. Itjust didn’t feel right. Soon, putting on makeup, washing my face, and resting my head on a pillow were no longer simple actions. Pain and anxiety started to cloud my thinking.
After several months of unsuccessful home remedies and visits to acupuncturists, chiropractors, pain specialists, and general medical practitioners, I sought help from experts. Numerous neurologists performed exams and tests, including MRIs, and each time my results were, surprisingly, normal. The neurologists were perplexed and suggested different medicines that seemed promising, but they never worked. After each consultation and round of new drugs, I became more convinced that my condition was incurable and that I would remain a prisoner to the pain.
In 2014, I visited a new neurologist who finally identified my condition: Trigeminal Neuralgia (TN). I was elated with the diagnosis, but the prior failed treatments had made me skeptical of any recommended solutions. Thankfully, we discovered that carbamazepine worked moderately well and, at times, I only needed a low dose to mitigate the pain and live a semi-normal life. Although my symptoms did not disappear completely, for instance I still had mildly-painful jolts run down my face occasionally, for the most part, I was able to successfully manage my pain for several years. I felt hopeful.
Unfortunately, my TN was merely cloaked by the medicine and it gradually revealed itself with increasing vengeance. The mild jolts turned into painful electric shocks that would surround my right eye and, to my surprise, spread to other areas of my head. My cheekbone and right ear became constant targets, and I was uncertain if it would continue to spread. The pain also began to manifest daily, and sometimes would last for many months, and then suddenly disappear for periods of time. The unpredictability made my life impossible to manage. As the attacks continued, my face became more sensitive to innocuous things like the weather, breezes, or even a light touch on my cheek or any other part of my face. I created an invisible sphere around my head and prayed it would protect me from painful triggers. Speaking, eating and drinking became unbearable. I tried new therapeutic alternatives and any relief was always insignificant and brief. I was a puppet, and my raw nerves were being pulled by a sadistic puppet master. I became a hermit and retreated into despair.
In February 2020, I underwent a minimally evasive Glycerin Rhizotomy surgical procedure to destroy the pain fibers in the trigeminal nerve. Although the outcome reduced the pain in the Ophthalmic branch (V1), sadly, it exacerbated the pain in the Maxillary (V2) andMandibular (V3) branches. I spent several months thereafter lost and unsure of my options.
Exhausted and no longer wanting to live a life without being fully present, I pushed aside my fear of surgery and, in July 2020, agreed to undergo a Microvascular Decompression (MVD)procedure performed by Dr. Michael Lim at The Johns Hopkins Hospital in Baltimore,Maryland. MVD is an evasive procedure that includes opening the skull to separate the trigeminal nerve from the blood vessel. I was out of options. I awoke from the surgery surrounded by medical staff, and I was proud of myself for undergoing the procedure, but what struck me the most was how I felt, or, specifically, what I didn’t feel: I had no facial pain. Dr.Lim informed me that he had discovered two significant compressions and successfully insertedTeflon spacers between the nerves and blood vessels. He saved me from a life consumed by TN pain.
Since surgery, I have remained pain-free and have committed to helping others who suffer from TN. Recovering from TN hasn’t been easy and there are times when I experience phantom pain or find myself pulling back when someone innocently tries to kiss my cheek. But I continue to embrace each pain-free day with the same zest that I had the first few days after my surgery.
During many moments of my TN journey, I missed out on several life events, including my boys’ school and social functions, family gatherings, and, generally, any social interactions. I was either suffering from intense pain or too scared of pain triggers. I felt incredibly lonely. I prevailed and I know you can too. We may not know each other, but I hope my story comforts you. You are NOT alone.
