Elizabeth Cilker Smith describes fear and suicidal thoughts
that came with her most horrendous facial pain prior to surgery
EDITOR’s NOTE: In January 2011, the author expressed the joy of remaining free of facial pain eight years and nine months after undergoing microvascular decompression (MVD) surgery for trigeminal neuralgia. In this article, she shares her memories of the long rocky road to finding effective treatment.
By Elizabeth Cilker Smith
I will always remember the date that changed my life. On May 17, 2002, Dr. John Alksne performed MVD, entering through my skull next to my brain. He lifted a large loop of a major blood artery off my main trigeminal nerve, packed it very carefully with Teflon, and stopped it from touching and tearing the outer sheath of the nerve.
Until that Friday, like many, trigeminal neuralgia greatly compromised the quality of my daily life and that of my family.
Through a journey of six years—from a small suspicious prick to excruciating pain, from Dilantin, Tegretol to Neurontin plus other drugs, from minimal medication to industrial strength cocktails, from relief and normal life and laughter to pain, isolation and depression—I traveled and learned these things:
First, there are two paths: One is a dark, narrow maze of secrecy, embarrassment and confusion offering limited views, loneliness and entrapment.The other path is clear, wide and open. It flows freely with maps, directional arrows and fellow travelers.
Choose the right one.
Secondly along the journey, make two plans—one a short term and one long term.
Thirdly, if possible, walk with a companion because the company is priceless. I Unknowingly I began along the wrong path with a well-known neurologist, who pretended he knew. He prescribed higher and higher doses of medicine and advised,
“Wait a month; if pain free, slowly decrease the pills.” A University of California San Francisco pain specialist said, “When the pain comes back, take the maximum level immediately!”
Eager to be free of “meds” as my teenager says, I rode a roller coaster handling my own doses. The alternatives were barely discussed. The risky procedures were“the last resort.” Needless to say, my neurologist was unacquainted with them.
And so, relieved to be free of pain and pills, I was left unprotected for the next stronger, more violent attack (of pain). And the attacks continued, increasing in intensity, in frequency, in duration. The prescriptions changed names; the pills changed color and size. Constantly drowsy,
I’d fall asleep standing up. I was dangerous on a road, had memory loss, dizziness, hallucinations, suffered panic attacks, often became unsocial, uncommunicative, unable to eat or unable to talk.
A generally happy, warm person with a high tolerance for pain, eventually I contemplated suicide. I had no long-term plans, only agonizing dread. My doctor was impatient with the fear, yet blunt about a possible brain tumor or multiple sclerosis.
When I had my most horrendous episode in the middle of the night, he wasn’t available. His assistant didn’t know me. So my husband and daughter lit candles, sat up and prayed while I lay petrified, afraid to breathe. Later I discovered I could have had a short-term plan—to have my doctor’s beeper number, to go to the emergency clinic, to be given Morphine.
There is so much fear around so much pain. Anxiety became my companion. When I was in distress, I had little energy to research trigeminal neuralgia. When I was pain-free, I had to step through the fear to read medical articles that were stark, cold and graphic.
Up until then, my husband had been assisting me with the doctors, medicine and caring for me during the attacks. He was so close it was difficult for him to step away and be an advocate for change. Finally, my sister, Noelle, started studying. She was determined to make a difference. The Trigeminal Neuralgia Association Website advertised a then-new book called Striking Back!, written from a layman’s point of view. Noelle ordered three copies and read 80 pages before gently encouraging me to curl up with it.
Once started, I couldn’t put it down. I found, in an unthreatening, simple, informative means, that there are reliable alternatives to medicine. There is concrete hope.
My sister became my champion, my companion to find the right choice to correct my trigeminal neuralgia. We took trips, interviewed neurosurgeons and studied techniques. She bought me a diary to keep track of my pain and medicine. We visited a trigeminal neuralgia support group together.
When Dr. Alskne, professor of neurological surgery at the University of San Diego, saw my thin-cut MRI (views obtained through magnetic resonance imaging), he told me I had classic trigeminal neuralgia and was a candidate for MVD surgery. It was a signature decision due to the small risk of very serious complications. However, the decision was made easier because of the greater chance than the other procedures for a full recovery.
Although for two months I had troublesome reactions coming off the medicine,the operation and immediate improvement went much more smoothly than I had imagined. Now I am back to a normal life—brushing my teeth, washing my face, eating, talking, smiling, laughing and kissing. I promise to never take these moments for granted.
My only regret is, had I taken the other road, made short and long-term plans with a companion, my recovery might have been sooner. Although I am pain-free to date, I still consider myself to be a percentage of the highly courageous and exclusive trigeminal neuralgia membership. Therefore, I am extremely appreciative of the opportunity to share my personal thoughts of the trigeminal journey.