I live a life in which pain plays a constant role

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When my friend Madeline turned seventy, she celebrated in a big way: She walked a half-marathon; she hosted a cabaret for family and friends at which she sang and told stories; she traveled to China. Now, six years later, this dynamic woman has become a virtual prisoner in her apartment. She has undergone back surgery, suffered a nearly fatal intestinal infection and, after a fall, had bolts and screws placed in her hip. Her voice, which once broadcast her energy and joie de vivre, has dwindled to a whisper.

The thread that links all of these bodily assaults is pain. Chronic, intense pain has drained away my friend’s energy and quality of life. No doctor has definitively diagnosed the source of her pain — or been able to find an antidote.

I feel a special sympathy for Madeline because, like her, I live a life in which pain plays a constant role.

My pain began ten years ago, in my left jaw. Initially, I thought it was just a bad toothache, but neither my dentist nor the root-canal specialist found anything wrong. I swallowed acetaminophen and used ice packs, feeling increasingly troubled by how hard the pain was making it to enjoy my life.

By 2008, pain was a full-time companion, and I finally consulted a maxillofacial surgeon. An MRI showed that the cartilage disc in my jaw joint was misaligned and perforated, so he removed the disc, leaving nothing in its place. I enjoyed several glorious weeks of comfort before the pain abruptly came back.

Eight months later, when it had once more become unbearable, the surgeon operated again, this time using tissue from my jaw to create a new disc.

Unfortunately, within a year, I’d lost fifteen pounds from being unable to comfortably open and close my mouth to eat, so I consulted another maxillofacial expert at a different medical center. Since my own tissue wasn’t working, he said, I needed a prosthetic device.

This was my third surgery. Again, after a few months of relief, my hopes for recovery were dashed by the pain’s return.

In the spring of 2015, a CT scan showed that bone was overgrowing the device. That summer, I had a fourth operation: The excess bone was cut away, the device was removed, and a new one was put in, with transferred stomach fat to cushion it.

“This will do the trick,” the surgeon assured me.

Now, almost a year later, the excess bone is growing back, and the pain is more constant and intense than ever. Beginning at the prosthesis site, it radiates out through my entire head — a fiery sensation like a lit match burning inside my skull. It often settles in my left eye, which throbs continually, destroying my concentration.

When I take adult lifelong-learning classes, the pain mocks me, interfering with my ability to focus on the teacher’s words; when I teach writing to my college English students, the pain saps my energy. At the symphony, the pain adds a sour undertone to the melodious notes of the orchestra; at the theater, the pain unravels the threads of the performers’ dialogue, leaving me lost in a maze of meaningless verbiage. Pain prevents my afternoon naps and wakes me up at night when I’ve inadvertently turned onto my left side. Pain deepens the lines and wrinkles on my sixty-eight-year-old face.

Nothing has helped — not acupuncture, not physical therapy, not Rolfing (a holistic approach that manipulates the soft tissue in my face), Botox injections, wet heat or ice, prayers or meditation. Getting through the day is a challenge; I turn to humor for comfort, but more often than not I end up crying and calling my two adult children for sympathy.

Sometimes I want to dig my fingers into my face, pull out the device and pretend that none of this had ever happened. But I know that it wouldn’t help.

My surgeon says that I need a fifth surgery to temporarily remove the prosthesis, cut deeper into the bone and then replace the device, but so far I’ve refused it. After all, each operation has only heightened the pain. He blames my pain on the weather, saying that cold temperatures and humidity can exacerbate it. But I doubt that this is the cause; the pain is always there, rain or shine.

When I complain to my surgeon or my primary care physician, they each send me away with a prescription for hydrocodone or oxycodone. I wish that they had healthier alternatives to offer, and I hope that they’re not stereotyping me as an aging woman who uses pain to garner attention. They dismiss my fear of becoming an addict; they seem untroubled that I sometimes take more than the prescribed four pills per day. Yet if they ever stop giving me this pill cushion that sometimes takes the edge off the pain, what will I do?

In 2012, the National Health Interview Survey, administered by the National Institutes of Health, reported that 11.2 percent of Americans suffer from chronic pain, and that 17.6 percent of Americans endure severe levels of pain. I believe that many pain sufferers avoid seeking medical help. Some don’t want their physicians to view them as hypochondriacs or whiners; others have no faith that the medical profession can help them. I share these concerns — while also worrying, paradoxically, that my insurance company will stop paying for my jaw-related medical appointments, medications, and surgeries.

In January of this year, Risa, my sister-in-law and good friend, died from complications of Crohn’s disease, having spent fifty of her seventy years grappling with pain caused by the disease. My first reaction to the news of her death was one of relief: At least she was finally free of her suffering.

Then I became angry — for Risa, for my friend Madeline, for myself, for everyone who suffers from chronic pain. Do only the dead deserve to be free of pain?

I recently spoke with a maxillofacial surgeon who told me that prosthetic devices like mine have a bad track record — that many surgeons now shy away from inserting them, and that other patients with these devices suffer as I do. His words brought no comfort. I’m angry that the device that promised so much may have made things worse, and that others suffer as much as I do. I’ll be happy only when a physician finds a way to diminish my pain–and I’m beginning to wonder if it will take a miracle.

Until that happens, I can only swallow my pills and try to pretend that my quality of life isn’t going downhill.

Neither of which cheers me up, or offers a path to a pain-free future.

Ronna Edelstein is a contributor to Pulse — voices from the heart of medicine.