My story is like many. I have a college degree and had a professional job in telecommunications. Almost at the prime of my career, pain began to interfere in all aspects of my life.
My particular pain issues are the result of being attacked by a stranger in 1991. He shattered the left side of my face, fracturing my eye socket and the base of my skull. I had surgery the next day and they performed a skull bone graft, using titanium plates and screws to rebuild what they could of my face.
Unfortunately, a few years later there were complications. I had a series of surgeries in 2000 to repair a dreaded complication, an infection in my facial bones. It turned out that the original metal plates and screws were loose, causing the infection and chronic inflammation around the major facial nerve. During the surgeries, the metal plates were removed, an implant was put in (and taken back out due to infection) and although a rib graft was scheduled, that too was aborted because of infection and inflammation.
When I woke up from that last surgery, I knew my life would never be the same. I was diagnosed with a form of trigeminal neuralgia, Trigeminal Neuropathic Pain (TNP), which is often called the “suicide disease.” While the disease itself is not a terminal condition, the intense, unending pain it causes can make you wish for death.
I am now 40 and have spent the last 12 years trying to manage this pain, instead of it managing me.
I never did have that area of my face rebuilt. As a result, my left eye has no real support and is slowly receding, causing double vision and increased pain in the eye. I have tried many therapies and seen numerous specialists, who have all come to the conclusion that pain medication is the most effective means to treat my pain, as the facial nerve has been permanently damaged.
The words I use to describe the pain really don’t do it justice. This pain is constant. It does not take a day off or go on vacation. The damaged facial nerve signals an intense crushing, heavy pressure or a burning sensation most of the day and night.
The pain radiates from a quarter size area on my cheek, just to the left of the nose. I call it the “hot zone.” The pain spreads up to my lower eyelid and down to my upper lip. This hot zone causes me the most pain. It’s as if someone were pressing a heavy anvil or a hot iron against my face. At other times, it feels like insects are eating and crawling between my lip and cheek.
There is also a sharp pinching pain. It’s like the pain you would feel if you burned yourself with a cigarette, that instant cringe. But my pain is constant.
I also experience breakthrough pain throughout the day and without warning, which often brings me to my knees. The triggers for these severe flares of pain can be just about anything: changes in the weather, talking, smiling, chewing or touching.
Over the last decade, I have seen numerous specialists, including the head of neurology at Johns Hopkins University, the head of neurology at Tampa General, and the trigeminal neuralgia experts at Shands Hospital at the University of Florida. Each specialist concluded that surgical intervention is not possible because the nerve is so severely damaged.
I have tried many different treatments in an attempt to control, subdue, or simply lessen the severity of my pain: antibiotic therapy, anti-seizure medication, hyperbaric chamber therapy, acupuncture, nerve blocking facial injections, a TENS unit, anti-inflammatory drugs, alternating hot and cold therapy, “embrace the pain” talk therapy and anti-depressant medication.
I would estimate that I have been to the ER no less than 30 times, along with countless visits to doctors. The ER trips stopped completely when I was placed on pain medication that allows me to maintain a reasonable semblance of a life.
The analgesics I take have changed drastically over the last few years, due to the hysteria over prescription drug abuse. I joined the Fight for Florida Pain Care Action Network when I started to get hassled at my pharmacy and told they were out of pain medication that I needed.
Never have I been lied to and treated as poorly as I have in these last few months. I had to actually hand over a binder of my personal medical records to the pharmacist, for him to deem me worthy of getting my prescription filled. Not only did I have to give up my medical privacy, I also had to turn over numerous personal documents just to get my prescription filled.
On my last visit, the pharmacist demanded that I bring in the drug test results from my doctor’s office if I wanted to continue to receive pain medication. The pharmacist said it was for their records, in case the DEA questioned them.
I could write a lot more about this, but will just say when I told my doctor he was baffled, saying, “Do they not know your condition?”
I only share this information so that you can see that I am not dealing with a minor illness or disease, but coping with a debilitating condition that is being managed somewhat effectively by therapy which includes pain medication.
We did not asked to be in the position we are in. We are at the mercy of our community to assist and support us so we can have somewhat of a life, a life far from the one we once knew.
Without certain medications — and soon I fear all with not be available — I can tell you honestly and without hesitation that I would be dead.
Jennifer Moore lives in Tampa, Florida with her husband and two children.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.