By Carol Levy, Columnist
In 1991, my surgeon ran out of options on how to help me. I’d had most of the procedures available for trigeminal neuralgia. Even the ones that helped were always short lived.
In a last ditch effort, he tried a dorsal column stimulator implant. It was successful in stopping about 85 percent of my pain. I was still disabled by severe eye pain, but I no longer had the spontaneous pain that could be caused by a simple touch.
Unfortunately, I lost the implant to an infection. A second implant did not help at all and also became infected.
The doctor told me there was nothing else he could do. There was so much scar tissue in my neck, where both implants had been placed, that surgically implanting another stimulator was impossible.
I was inconsolable. This was it.
No medications were helping and I dreaded a new neurosurgical attempt. But how could I refuse, if it might relieve the pain? Pain is different than most other symptoms. We are biologically ordained to do almost anything we can to be free of it.
The doctor understood this. To my astonishment, he had not given up. One day he came to me and said, “I have an idea.” It would be another implant, in the sensory cortex area of my brain,
The surgery would be 100% experimental. Only 12 other people in the world had it. Most of those were for pain in a different area of the brain than trigeminal neuralgia.
But I was in pain. Daunting, intolerable and disabling pain. Of course I said, “Yes.”
Recovering from the surgery was horrendous. I was anesthetized, but repeatedly awakened so they could ask, “Where is the pain? Where is it now?”
Over and over again; awake, torture, sleep, awake, torture, sleep. Finally, there was blessed sleep only.
I was not convinced the implant helped, until it failed 20 years later. Then I realized it had slightly reduced the level of my phantom pain. Not much, but enough that once it stopped working, the pain increased. It did nothing for the eye pain, but any relief is to be celebrated.
I thought the doctor who took over my surgeon’s practice could fix it, but that was not feasible. The implant was so old the replacement parts were no longer available.
In two weeks he will take the implant out so that I can get an MRI, to see if there is anything else he can do to try and help me (I cannot have an MRI because of the implant).
The funny thing is I’ve asked him, more than once: “Can't you use the newer version and just put the implant back?”
The answer is always no.
It didn’t occur to me that I was asking him to put me through the torture of the procedure all over again. Worse still, once I realized repeating the surgery meant repeating the torture, I still found myself entertaining the thought: Maybe I could tolerate it if he would do it.
I cannot imagine putting myself through that horror again - when I think about it sensibly. But, when I think about it from a pain standpoint and how I may get some relief, it seems like a sensible idea.
Thankfully, he's refused so the debate within myself is purely hypothetical. I wonder though, what exactly will we do or entertain if it offers the possibility of ending the pain? How far are we willing we go?
That, in its own way, may be as petrifying as the pain itself.
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.