By Carol Levy, Columnist
For the first time in almost 40 years, two doctors said the same words to me, the words I have always dreaded: “Tough luck.”
Their words were meant to be kind, but the meaning was the same: There is no cure.
That is the last thing I want to hear. The last thing most of us want to hear.
I am a new patient of both doctors. They do not realize I am like a woman who fell overboard, clinging desperately to the side of the ship. I cling desperately to hope – the hope that someday, someone, something, will end the pain. It is what keeps me fighting.
It is that little sliver of hope, even after all this time, that there is an answer. And then I could work again. Do anything I want to do. And do it without pain.
For all intents and purposes, I have been mostly housebound for the last 39 years, except for 3 months in 1977 when I had my first and only completely successful surgery. I got a job as soon as I was permitted. I made wonderful new friends. We went out every weekend and during the week too. It was glorious. And then, one day while at my desk, a trigeminal neuralgia pain tore into my temple. And my life was lost again to the demon pain.
I do get out of my apartment. I take a class 2 times a week at my local Y. I am active in politics and try to get to the monthly meeting and other events. I go to the grocery, the bank and doctor's appointments. All of these make the eye usage and eye movement pain much worse, but I do them and get through them (sometimes with a little narcotic helper). But absent those times, I am home.
The pain comes even when I am doing nothing. Staying home does not give me control over it. But by staying in, I reduce the number of times I am actively inviting the pain to get worse. Little by little, unconsciously, I am miniaturizing my life, doing as few things as possible so I don't exacerbate the pain.
This is no way to live, so I still search.
My pain management doctor tries new medications. They have not helped so far. It does not stop me from continuing to up the doses, as prescribed, just in case. As he writes out the prescription he is clear: “Maybe one of these will reduce the pain but you can't expect more than that.”
In other words, tough luck.
Meanwhile, my neurosurgeon has given me two last and final options. He can redo a procedure I had in 1980 that helped with the spontaneous pain (that could be triggered with the touch of a hair), until it failed 5 years later. Unfortunately, while doing the operation they removed bone in my neck. They took out way too much and my neck “fell down.” It is now held up with clamps in the front and back of the cervical spine, which are held in place by 12 pins.
Because of this, my new surgeon can’t go in where or the way he wants. It makes the outcome and risks much more unknown. There is only a 45% to 55% chance it will work, with a risk of paralysis among others. Almost equal odds.
The other option is worse, the odds are even: 50–50. Worse still, the operation is essentially psychosurgery. He would place a lesion in the frontal cortex of my brain. “You will still have pain, you'll just not perceive it as pain,” he explained.
So, what do I do? What do we do when faced with equally awful choices?
I honestly don't know.
I do know that learning to live with pain, what so many of us are told, is of no help when no one tells us how to do that. If they would, maybe “tough luck” would be an acceptable option.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.