'Teflon sponge cured my pain'
By Susan Cormier for CNN
Susan Cormier: "It's hard to believe that a piece of Teflon sponge has given me back my life."
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(CNN) -- Susan Cormier, from New Brunswick in Canada, developed a condition seven years ago where "gag-inducing" pain is the main symptom. Five years after her diagnosis, she had surgery, which involved inserting a tiny piece of Teflon sponge at the back of her ear. The pain has since gone. This is her story:
I vividly remember the day the pain started. Seven years ago, I was brushing my teeth. At first I thought it was a tooth problem, but it came and went so I didn't think too much about it at the time. The next month, March 1998, I was drinking a glass of water when the same pain returned. I visited the dentist, figuring it was a cavity. My dentists obviously thought the same as I had a tooth removed, but the pain continued.
Between May and August, I saw doctors, a neurologist, an ear-nose-throat specialist, had 17 jaw X-rays, a CT Scan, an MRI scan and was put on various drugs. Nothing worked and no one could tell me why I was suffering this gag-inducing pain. During this time I lost 22lb. The pain came whenever I coughed, yawned, sneezed, spoke and, worst of all, swallowed. I became paranoid and tried to stop doing any of these things -- I went for two of three months without yawning or sneezing.
Eventually, I was diagnosed with a condition called glossopheryngeal neuralgia (GN). It occurs when the pharyngeal artery in the brain and the ninth cranial nerve touch. This causes an electrical shock, causing a pain, which starts at the base of the throat and over time shoots up the left side of the face into the ear. The pain lasts only seconds at a time, but is so severe that a gagging reflex is triggered. It is a life-altering condition.
No one knows exactly what causes GN, but some Web sites say triggers can include stress, post-traumatic stress disorder or injury during childhood. When I was 15, I was knocked off my bike by a car driven by a drunk driver. But equally I have had stressful events in my life from a young age, so it is difficult to know exactly why I have GN.
Thankfully -- mercifully -- one doctor prescribed Tegretol, used to control epileptic seizures, and it only started working when my dose was 800mg a day. The dose starts at 200mg a day and is increased by that same amount every day, so it took only a week before I felt like it was working.
Although the pain wasn't as severe while I took the drugs, it was still there and my dose was as high as 1200mg. This was seven months after the pain began and I was in bad shape, both physically and mentally.
Between 1999 and 2002, I took my medication ritualistically and did lots of Internet research. Doctors said I couldn't take the medication for ever and should take breaks if possible. I had to reduce the Tegretol gradually and stay off it for a while and when the pain came back I would start up again.
In October 2002, I asked my GP for another MRI scan, to identify exactly where the nerve and artery were touching. I had read about a treatment called microvascular decompression on the Internet, which I believed would help.
The treatment involves placing a sponge made out of Teflon in between the artery and the nerve to stop them from touching. Finally, in June 2003, I had the surgery.
The five-hour surgery takes place on the back of the neck, behind the left ear and continues up the skull about two inches. The tiny piece of sponge costs about $5,000. I consider my neurosurgeon, Dr. Dhany Charest, a genius. Recovery was hard -- about two to three months, but worth every moment. It's hard to believe that a piece of Teflon sponge has given me back my life.
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