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    Posted September 7, 2013 by
    leejcaroll
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    Pennsylvania

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    MY TRIGEMINAL NEURALGIA STORY.

     

    CNN PRODUCER NOTE     Carol Levy has been suffering from Trigeminal Neuralgia for more than 30 years. She was only 26 when she first felt a pang in her left temple, the same spot where she has a large birthmark. “I was virtually housebound by the pain for many years. I could not tolerate any touch to the pained area,” she said. Doctors removed the birthmark and its blood vessels, but it grew back after only a few months and the searing pain returned, she said. Two more procedures left her with a loss of sensation and loss of taste in her mouth.

    As a last resort to help treat the pain, she opted for a Microvascular Decompression (MVD). It is a procedure designed to treat facial pain or spasms – it’s a common surgery performed on some Trigeminal Neuralgia patients. When Levy awoke from the procedure, she couldn’t feel the left side of her face and her eye would not shut. She had to have her left eye temporarily sewn shut so it wouldn’t dry out, a procedure she has from time to time.

    “My story gives the two ends of the spectrum: the surgery that helped and the one that ruined any chances I had at ending the pain and looking normal again. I am one of the many faces of trigeminal neuralgia,” she said.
    - zdan, CNN iReport producer

    My pain started in 1979 when I was 26. I had moved 6 months before to NYC, hopefully to succeed as a singer/actress. Sitting in my living room I was suddenly attacked by a pain, out of the blue, that was more horrendous then words, a lightning bolt and knife cutting through my left temple. It lasted for 20 - 30 seconds but has kept me disabled for the last 30+ years I have a birthmark on the left side of my face, from the forehead to above my nose. Unlike most birthmarks that do not have a blood supply mine does. It encompasses the exact area of the face related to my trigeminal neuralgia (called V1,V2). It turns out I have a birth defect that resulted in dozens if not more of extra blood vessels throughout the left side of my brain. It took time to get diagnosed but then I had my first surgery. The  first surgeon cut away as much of the extra vessels as he could. To everyone's amazement it worked. Absent a teeny red area, all that remained of the birthmark, there was no sign it or the pain had ever been there. Unfortunately within 3 months the vessels grew back and with it the trigeminal neuralgia started agin in the exact same way, out of the blue and horrendous. I had 2 procedures that did not work, the second leaving me with no benefit but numbness in the area of the pain as well as in the rest of the left side of my face. I also had a numb mouth and tongue and lost the taste in the left side of my face. My neuroophthalmologist and the neurosurgeon referred me to a neurosurgeon in Pittsburgh. He had developed (or refined) a surgery specific for trigeminal neuralgia called a Microvascular decompression procedure (MVD).  He decided I should come into the hospital possibly for an MVD, After numerous tests and evaluations it was decided I should have the MVD. Because the lost of sensation in my mouth and loss of taste in the left side had been unexpected I asked him  if my face could be injured in any way?  I was assured that was not a risk. When I awakened in the ICU (where all who have had MVD go after the surgery) my face was paralyzed 100% on the operated side. As a result my eye would not shut and had to be surgically closed. My appearance was so awful that my one sister threatened me with never seeing her kids, my nephews, again if they ever saw me a second time without my sunglasses on. As a result of the way the operation was done other surgeons were unable to help and stop or reduce the pain (until an implant in 1986 but that is a whole ‘nother story). My story gives the two ends of the spectrum: the surgery that halped and the one that ruined any chances I had at ending the pain and looking normal again. I am one of the many faces of trigeminal neuralgia. I wrote a book, published 10 years ago this month, on my personal experience with trigeminal neuralgia. The trigeminal neuralgia association, now called the Facial Pain Association, refused to put a click for the book at their site. I was told by different people on the board why they refused. One reason was because in the book I mention my experience with the surgeon who paralyzed my face. The other was that my story was “too harrowing” My story is harrowing but so too is the story of almost all who have trigeminal neuralgia. As the TV show Naked City used to intone “There are 8 million stories in the city. This is just one of them”, there are thousands and thousands of trigeminal neuralgia stories. This is just one more.

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