Hello, my name is Stephanie Blough, and I am honored to share my experience with trigeminal neuralgia (TN) and the successful surgery I had that has left me pain and medication free since 2013. I will begin with what led me to this decision…
It wasn’t until after my surgery that I learned I have had TN as far back as I can remember. What I would call my “first memory” of TN was standing at the bus stop in elementary school, and I got a sharp stabbing pain in my left ear. It was a fast episode and stopped just as quickly as it came on. I never said anything because I thought this was just something that happened to everyone. These sharp pains would come and go from that day forward until I was in my mid-twenties. It was then that the episodes would happen as the cold air hit my face getting out of the shower or when the wind blew outside, and it literally dropped me to my knees.
At that point, I began discussing these episodes with my family doctor, who diagnosed me with chronic sinusitis due to allergies (my main trigger point was beside my nose, in the sinus area of my left cheek). For five long years, I was on and off antibiotics, still in pain, until I decided to see an otolaryngologist, more commonly referred to as an ear, nose, and throat (ENT) doctor. Not even five minutes into my appointment, he told me he was certain of my diagnosis and was referring me to a neurologist for trigeminal neuralgia. Thankfully, a local neurologist was knowledgeable about TN, and he started me on antiseizure and nerve pain medication.
At that time, I was a full-time employee in a finance role and continuing my education at night. The medications often left me with immense brain fog, making it difficult to concentrate and retain information. I brought this up to my neurologist, and he proposed I see a pain management specialist, who suggested I try nerve blocks. This was my first real exposure to being pain-free. I had eight successful nerve blocks, anywhere from 6-8 weeks apart, until I had a minor issue with my ninth block pushing me to seek a more permanent solution.
When I discussed my struggles with my neurologist, he referred me to a neurosurgeon in Cleveland, Ohio. I was scared to death – I did not want a microvascular decompression (MVD), and I was unaware there were other surgical options that could help. When I met with my neurosurgeon, I was surprised to learn that, in fact, he did not recommend an MVD for me because I did not have any compressions visible on my nerves. His suggestion was a percutaneous radiofrequency rhizotomy. He explained that he would make a small incision in my cheek, add a dose of high heat to the needle, and put small lesions as far out as he could on the nerves causing my pain, which would stop the signals from telling my brain that there was pain in those areas. He shared that the biggest side effect I would have is numbness, which is an expected outcome of this procedure. I’m going to say that again because this is what I have found to be the most misunderstood part of this surgery for others to grasp: the expected outcome of this procedure is numbness. For me, this was a comfortable and promising tradeoff for pain and medications. I made the appointment right then to come back for the surgery.
My rhizotomy was a same-day procedure done in the operating room (OR) at the hospital. I was in the waiting room at 6am and on my way home by 1pm that afternoon. An anesthesiologist put me under as I went into the OR. I’m told I was brought into a twilight state when the surgeon needed me to confirm where my pain was with his assistance in recreating a flare (I do not remember this at all), and then I was put back to sleep to complete the procedure. When I awoke, they used a safety pin to poke my face where my pain had been, and I could not feel it. Then, they poked an area that was not touched during the procedure, and it hurt. We had achieved what we wanted to do, and I was sent to recovery. Leaving the hospital that day I was sore, feeling like someone hit me upside the head with a baseball bat – but I did not have any TN pain. I spent the weekend resting and was back to work and school that following Monday.
What is the outcome of my surgery, you ask? With the guidance of my neurologist, I weaned off the medications, I am numb in many parts of the left side of my face, and most importantly, I am TN-pain-free. I was advised this procedure is usually a fix for about five years and that if the pain should come back, I am able to call my neurosurgeon and they will get me in to perform the procedure again. Thankfully, it has been a blessed nine years for me, and I have not had to make that call. Would I do it again? You betcha! For me, this was the way I got my life back. No one knows I am numb unless I share my story and that numbness is what has allowed me to become me again. I’d take the numbness over pain any day.
My advice to my fellow facial pain community members is to be your own advocate and don’t limit yourself to the first solution you come across. Be open and honest with your medical team and if you are not getting to the place you want to be, get another opinion. What works for one doesn’t always work for or isn’t the best choice for another, but there are procedures that can help – do what is best for you!