Tara, a patient of ours writes, “Oh no,” I thought to myself, “I must have a horrible cavity–the pain was so severe, I felt it not just in my teeth but also in my jawbone.” What presents itself as agonizing tooth pain could actually be Trigeminal Neuralgia. Most patients report that their pain begins spontaneously and suddenly. Other patients say their pain is a triggered by physical trauma i.e. a car accident. Some patients consult their dentists and in desperation go through with a root canal, which inevitably brings no relief. When the pain persists, patients realize the problem is not dental-related.
According to the American Association of Neuorological Surgeons (AANS), the pain of TN is defined as either type 1 (TN1) or type 2 (TN2). TN1 is characterized by intensely sharp, throbbing, sporadic, burning or shock-like pain around the eyes, lips, nose, jaw, forehead and scalp. TN1 can get worse resulting in more pain spells that last longer. TN2 pain often is present as a constant, burning, aching and may also have stabbing less intense than TN1.
TN tends to run in cycles. The AANS explains, “patients often suffer long stretches of frequent attacks, followed by weeks, months or even years of little or no pain. The usual pattern, however, is for the attacks to intensify over time with shorter pain-free periods. Some patients suffer less than one attack a day, while others experience a dozen or more every hour. The pain typically begins with a sensation of electrical shocks that culminates in an excruciating stabbing pain within less than 20 seconds. The pain often leaves patients with uncontrollable facial spasms, which is why the disorder is also known as tic douloureux”.
As we welcome 2022, a New Year, let’s start with gratitude and appreciation. We at Dental Design Studio in the Hudson Valley of Poughkeepsie, NY are fortunate to work with some of the most exceptional patients who we consider dear friends and family. In Tara’s case, Dr. Whalen was glad to have an integral role in Tara’s journey. Here’s the story…
“My Rollercoaster Ride with Trigeminal Neuralgia”
by Tara L. Pantalone
“Oh no,” I thought to myself, “I must have a horrible cavity.” The pain was so severe, I felt it not just in my teeth but also in my jawbone. I called Dental Design Studio in agony the following day and went to the office the same day. I had a full examination complete with X-rays. After ruling out TMJ, Dr. Whalen gave me his provisional diagnosis, “Trigeminal Neuralgia” (T.N.) TWO words that I had never heard before but would soon play a significant role in my life. I also had electric type pain deep in my ear. Dr. Whalen encouraged me to see my primary care physician to rule out an ear infection. My primary saw me later the same day. I explained to him that Dr. Whalen hadn‘t found any cavities or other issues with my teeth. (I did not tell him about the possibility of trigeminal neuralgia, I could barely pronounce it!) He also ran a series of tests; everything was normal. No ear infection or sinus infection; blood tests were fine. Then he asked me, “Have you ever heard of trigeminal neuralgia?”
The next day I was in the office of my neurologist. I nervously hoped that my symptoms would not be T.N. and would just be another annoying characteristic of my chronic migraines. After listening to me describe the pain, my neurologist said, “Your dentist is correct. It sounds like trigeminal neuralgia.” Also known as tic douloureux (‘painful tic‘). And earned the awful nickname “the suicide disease” as it is one of the most painful conditions known to humans (Yes, worse than labor with or without medication!) Further examination and testing revealed that I have both types of this rare disease. (TN1 is the sharp, electric–like shocks that can last seconds to minutes but can repeatedly occur throughout the day/evening and usually intensifies with time. TN2 is characterized by constant aching, burning, stabbing pain.)
After failed trials of prescription medications (I‘m allergic to all) and several MRIS, the pain grew in intensity. The slightest breeze could trigger a flare; brushing my teeth became excruciating. I cut off my shoulder–length hair because its weight was causing pain, and pulling it back was out of the question. My symptoms continued to increase and multiply. There was very little that I could eat, and whenever I did, it tasted like metal. My weight plummeted, and my overall health was suffering. My neurologist advised me to consult with a neurosurgeon since I had failed all the medication trials and my weight was dangerously low. I met with two neurosurgeons and listened to their different recommendations.
Eventually, I made the difficult decision to have neurosurgery. Microvascular decompression (MVD) is a procedure that involves locating the cause of nerve impingement (usually, a vein or artery presses on the trigeminal nerve causing the pain), a Teflon pad is placed in between to act as a buffer. After my MVD*, I woke up from surgery pain–free!
During my two-year experience, I found out that many people suffer for decades without a proper diagnosis. They have their teeth pulled unnecessarily, undergo root canals or other unsuccessful dental procedures. I consider myself very fortunate to be a patient of Dr. Whalen. If it were not for his expertise and guidance, who knows how long I would have suffered. He has not only improved the quality of my smile, but he also improved the quality of my life.
October is Facial Pain Awareness month. For more information on trigeminal neuralgia, please visit: The Facial Pain Association: https://www.facepain.org National Organization for Rare Diseases: https://rarediseases.org/organizations/tna–the–facial–pain–association/ Westchester Medical Center Brain & Spine Institute: https://www.westchestermedicalcenter.org/brain–and–spine–institute
*Please note that there are other procedures available, and each case is different. Microvascular decompression (MVD) was the correct treatment plan for me, but another option might be better for someone else. Consult with your doctors and specialists for the most appropriate method of care.
With deep appreciation, this post is dedicated to Tara Pantalone. Thank you for your time, bravery and generosity. May we continue to raise awareness of Trigeminal Neuralgia and help those who are lost and in pain. #KnowledgeIsPower