Trigeminal Neuralgia: 26 years

So if you’re been reading this blog for awhile, you know that I have been battling trigeminal neuralgia (an excruciatingly painful inflammation of the trigeminal nerve, which supplies sensation to the face) for about four years. It went undiagnosed for almost three. The medication I take to control it stopped working around May, and my dose was increased. It did not help at all. So I’m pretty much back to constant pain again which frankly sucks.

Four years.

Very recently, I made a startling discovery.  I have been battling it for longer.

Twenty-six years.

Let me explain.

I had major jaw surgery to correct severe TMJ when I was fifteen—a nine-hour surgery where my oral/maxillofacial surgeon broke my jaws apart and realigned them, rearranged my face the way it’s supposed to be, and wired my jaws together for two months. As I’ve learned, surgeries like this—as well as routine dental work—can cause TN.

I had 28 pieces of hardware after the surgery. They took a “if it doesn’t hurt, don’t do anything” policy because taking them out would be another big surgery. They didn’t bother me, for the most part, for eleven years. Then, I started getting infections and rejections. So out they came. Oddly enough, most of the right side is still intact while the left is almost completely gone.

Throughout this entire ordeal, I keep asking myself (and anyone else who would listen) why it stayed dormant for over twenty years and then popped up. Now I know what really happened.

About a week ago, I remembered something from just after the surgery. I remember being fifteen and hanging out with my friends at a Haunted House. It was so cold that I got what I used to call “jaw aches”—excruciating pain that I theorized was caused by the hardware getting cold. I even remember covering my lower left jaw with my scarf so it wouldn’t get so cold. Note: my lower LEFT jaw. It never, ever happened on the right side.

Fast forward about twenty years. I begin having this weird pain in my upper jaw. When I ask my dentist about it, he said, “It’s probably neuropathy from the surgery.” If I’d asked for more information then, I would have probably saved myself a lot of pain and suffering and confusion. But I didn’t. Neuropathy is a dysfunction of a nerve.

Fast forward another year or two. I wake up one Saturday with excruciating pain in my lower left jaw. So bad that I get an emergency appointment with my dentist. I get everything checked out, and my dentist says he thinks it has something to do with the remaining hardware in my jaw (remember, there’s very little at this point). I go to my oral surgeon—the same one who performed the surgery all those years ago—and he asks for an X-ray before he’ll touch it (which is good). They were having issues there and I couldn’t get the X-ray at the time. I ended up getting one at my dentist’s office. By the time I got around to making that second appointment, the pain had inexplicably disappeared.

There were migraines in my left eye I couldn’t get rid of very well that may have been TN. I also used to get pain in the lower corner of my lower left jaw—roughly where the first hardware removal was. I’d assumed that it had something to do with that. I also had some weird shooting pains in my lower lip—around the same place where I am numb from the original surgery—and assumed (I really should have stopped assuming things) that my nerves were finally waking up.

All on the left.

In my defense, I never knew TN existed, and these were random things that were never constant enough to warrant investigation. It wasn’t until my eye joined the party that I finally needed to do something. So apparently I have it in all three branches (not everyone gets all three. Some get two or one). It is really scary thinking that it was there the whole time, lurking in the background, waiting to strike and completely change the course of my life.

And it took the eye pain to get me to investigate.

(For the record, I don’t blame anyone for the TN. The surgery needed to be done for functional reasons, and my parents and I made the best decision for me at the time. It is also not my surgeon’s fault. I’ve learned that some people have a tendency toward neuropathy, and if you do, things like this can activate it. Scary thought).

So, when someone asks me how long this has been going on, I’ll say “twenty-six years.” If he or she asks how long I’ve waited for the pain to go away, I’ll say “forever.” Because it certainly feels that way.

I still hold hope for a cure. Or at least a better option. Something to take this awful pain away. Not just for me, but for my fellow TN warriors. We need to end the suffering.


  1. Thanks KD. <3 backatcha!

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