Amazing Medical Mysteries… Solved!

Debilitating pain, unbearable noises, constant retching: These patients vowed to go to any lengths to find a cure.

By Kimberly Hiss from from Reader's Digest Magazine | April 2013

Amazing Medical Mysteries… Solved!Photograph by Robert Trachtenberg
The Patient’s Story: The Suicide Disease
Diane Hicks, 39-year-old district director for Giant Food Stores and mother of three from Owings, Maryland—At work, I started noticing these small, dull aches, like a toothache, in the back left side of my mouth. I also started getting headaches that would last only a few seconds. I’d had a root canal following an infection that summer, so when these pains went on for about three weeks, I went back to my dentist. But he couldn’t find anything wrong.

Throughout the fall, the headaches came more often, and my teeth and neck started to hurt—always on the left side. I went back to my dentist; he guessed the problem might be a wisdom tooth, so he extracted my top left one. The week before Christmas, I started getting these incredible episodes of jabbing pain, like someone was stabbing me in the jaw with an ice pick. Two days before Christmas Eve, I got a stab of pain so bad that I passed out. That night, I made an appointment with my family doctor, who checked me for everything, including swine flu. He couldn’t find anything wrong, but when I mentioned the root canal and infection, he prescribed an antibiotic and a painkiller. I remember that night crying hysterically because no one could tell me what was going on.

I have three young kids, but I was barely able to celebrate Christmas that year. I spent the day crying on the couch, but I didn’t want to go to the emergency room on the holiday. When we went to the ER the next morning, the stabbing pain was so intense, I felt like I was being electrocuted every few minutes. My heart was racing, and my blood pressure was through the roof. They tested me for stroke and heart attack and gave me an MRI, a CAT scan, everything—all negative. Four hours later, I was saying to the doctor, “You can’t tell me everything’s OK,” and I showed where the pain was by stretching my hand to cover my left temple, jaw, and the spot under my nose. At that exact moment another doctor was passing by, and when he saw me make that gesture he said, “Sweetheart, could you do that again?” When I did, he said, “Have you ever heard of trigeminal neuralgia?” I said no; I couldn’t even pronounce it. And he asked, “Is the pain ever triggered by something like feeling wind on your face?” and I said, “Oh my God, yes!!” So he recommended a neurologist. To this day, I don’t know who that doctor was, but he saved my life.

I started reading everything I could find online about trigeminal neuralgia, and that’s how I heard about a surgery at Johns Hopkins that could cure it.

The Doctor’s Story
Michael Lim, MD, assistant professor of neurosurgery and oncology at Johns Hopkins School of Medicine—By the time Diane saw me, she was desperately looking for lasting relief as well as confirmation that she did have trigeminal neuralgia (TN). Her description—the sharp, stabbing pain, the episodic nature of it, the kinds of triggers—was definitely of the classic symptoms, believed to be caused by an artery pressing against the face’s trigeminal nerve. As that artery pulsates over the years, it wears away the nerve’s insulation (called myelin) until it exposes the nerve endings, resulting in extreme pain.

TN isn’t common, but it’s been known for a long time—it’s mentioned in the novel Moby-Dick by its other name, tic douloureux. It’s also been called the suicide disease, because the pain makes some people want to kill themselves. In med school, we get only small excerpts on TN, buried among the many other things that cause facial pain, so it’s understandable that Diane’s doctors had missed it.

I ordered a high-resolution MRI, which indicated Diane’s vessel was compressing the nerve, and I talked with her about a surgical procedure called microvascular decompression, which I typically recommend for younger patients like her because it’s the most durable treatment. We did Diane’s procedure that July, and it involved making an incision behind the ear, opening a small piece of bone, then lifting the artery off the nerve and placing a Teflon cushion between them. Diane’s artery was actually pressing so hard that when I released it, I found it had left a little dent in the nerve. Most patients are groggy after surgery, but I remember Diane opening her eyes and literally crying for joy.

Diane’s New Life
I’ll never forget waking up and saying, “I can’t believe the pain is gone!” and Dr. Lim just smiling from ear to ear. I felt like my face was whole again. Dr. Lim said when he opened me up, the vessels were pressing my nerve so badly that they could have been that way for a long time, so I believe the root canal exacerbated the whole thing.

And now, I’m perfect. There was a time I never envisioned myself being able to smile again and enjoy my family. Since the surgery, I’ve started getting really healthy and going to the gym five days a week. I don’t even have to take pain medicine anymore—I’m that cured!

Next: Four more curious cases with Travis Stork.

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  • Your Comments

    • Mai Acosta

      My husband has been complaining of abdominal pain after he had an ERCP since then he had more or less four operations in a year but his condition was not treated.

    • http://www.facebook.com/MikeHeXt Mike DiGiacomo

      I have achalasia as well. There are quite a few communities on Facebook. The condition never goes away. It can only be treated. The surgery allows things to pass but doesn’t cure it. I went through the common surgery done through it as well.

    • Mitchell Earl

      Thanks for having this only since the Reader’s Digest April 2013 omitted 1/3 of the article.