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Much of the last few weeks I’ve been doing my research on Trigeminal Neuralgia (TN). A few interesting things I’ve learned include:

  • Norman Fell (aka Mr. Roper from Three’s Company) had TN, as did Jefferson Davis, Sergei Rachmaninof, Gloria Steinem, and Norma Zimmer.
  • A bit character in Moby Dick is noted for having it. “Didn’t that dough-boy, the steward, tell me that of a morning he always finds the old man’s hammock clothes all rumples and tumbled, and the sheets down at the foot, and coverlid almost tied into knots, and the pillow a sort of frightful hot, as though a baked brick had been on it? A hot old man! I guess he’s got what some folks ashore call a conscience; it’s a kind of Tic-Dolly-row they say — worse nor a toothache. Well, well; I don’t know what it is, but the Lord keep me from catching it.”
  • Due to the mysterious nature of the pain people over the centuries have tried a variety of things to “cure” it, including: blood-letting, exorcism, arsenic, bee and cobra venom, hemlock, tar on the face, searing the nerve with  hot iron, shock therapy, hypnotism, radiation and X-ray therapy and inhalation of trichlorethylene (now known as TCE).

Basically, it sucked to have TN before about the 1950s. It was then that Dr. Dandy hypothesized that vessels were compressing the trigeminal nerve. He began performing surgeries to remove the offending vessels, and people were finally getting consistent relief.

This is still the most promising form of getting relief from TN.

Turns out, I’m a great candidate for surgery, and I’m moving forward with that option. It will be months before it’s scheduled–if it’s scheduled (several tests will happen ahead of time); it will probably be months before I even get a consult. I’ll keep you posted.

For those interested, the surgery is called Microvascular Decompression (MVD). This site has great in-depth info about the who, what, when, why, and how of it, including illustrations of the open skull–if that sort of thing bothers you, consider yourself warned. But in basic terms, it’s believed that vessels compress the trigeminal nerve, causing my wackadoo pain. The  point of the surgery is to pad the nerve with Teflon, or separate it from the offending vessels.

Is it brain surgery? No. The brain is not operated on. It’s considered cranial surgery. And obviously, it’s still quite serious. Real risks include hearing loss in my right ear (to which Eleanor said, “Cool!”) or partial numbness in my face. Each happens about 1 to 2 percent of the time. Does that scare me? No. I told my mom this: I feel like I’ve lost 35 percent of my life to TN since I’ve had it. Besides the pain and the vivid dread of an attack, it’s affected work, marriage, family, and my social life. Dicking around with meds and trying to chase the pain away while coping with side effects that made me anywhere from forgetful and unfocused to suicidal is part of that 35 percent loss. If the meds even worked! Living at 65 percent is doable. Do I want to settle for that for the rest of my life? No. So, if I go deaf in an ear or have numbness, I’ll still get some of that percentage back.

My biggest fear? That it won’t work.