‘What can a pain specialist do for you, anyway?’

First in a series. 

“All right, I have to go. Bye, Sherry,” my then-new pain specialist said. “I hope I won’t see you for a few months.” That was a few days after he’d administered a caudal epidural nerve block for my chronic neuropathic pain, almost a month after we’d first met in the hospital’s neurology ward. Finally, we thought, a potential solution for getting me back, at least in part, to what my life was like before debilitating pain kept me in bed.

As he walked out of the ward, I jokingly called, “I hope I never see you again!”

It’s not that I didn’t like him, nor did he dislike me. But we both knew that if I saw him again, it’d mean my condition had worsened.

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Little did we know we’d see each other again a week later, when I was hospitalized for nausea from my oxycodone prescription and later developed chest pains. And again in his clinic a couple weeks later, when I complained of pain under my ribs. And again in the neurology ward just days after that, when the neuropathic pain in my scalp made it impossible for me to eat. And again and again and again, each time the fentanyl controlling my pain caused vomiting, or a pain flare affected my basic functions, no matter the time of day.

I think I speak for both myself and my pain specialist when I say we didn’t imagine I’d be in and out of the hospital for six months. It’s a good thing he thinks I’m one of his best patients — a compliment he delivered with my first doses of steroids, in fact.

To quote Peter Parker in ‘Spider-Man 2,’ ‘My back! My back!’

Chronic pain is unfortunately a common human experience — low back pain, especially. It’s the leading cause of disability worldwide, and the World Health Organization estimates there will be 843 million cases globally by 2050. To treat patients with low back pain is to contribute to a billion-dollar market that shows no signs of shrinking.

For SMA patients like myself, treatment tends to include corrective scoliosis surgery. But even then, there’s no guarantee we won’t experience any chronic pain, or that the surgery itself won’t cause more pain. According to a Swiss study published last year in the Journal of Clinical Medicine, chronic pain is common among those of us with SMA, and patients who are female or who’ve undergone spinal corrections are more likely to experience it.

But what happens to those of us who don’t even have surgery as a treatment option, like myself? What happens when painkillers aren’t enough? Do we just scream and writhe in pain all day, every day, wasting away?

That’s where a pain specialist could intervene.

I have to confess, I was initially reluctant to consult with mine. My neurologists had managed the pain in my scalp and leg with prescribed medications for several years by that point, and I didn’t think the pain specialist could do more than they could.

But though his recommended course of treatment ultimately included opioids (which I’ll touch on later in this series), he also introduced me to procedures that reduce sensitivity to pain, including injections of steroids, platelet-rich plasma, and phenol. He referred me to a pain psychologist to ensure negative emotional states wouldn’t affect my physical condition.

He advised me on whether I should pursue spinal surgery. He talked to me about last resorts, including an intrathecal pain pump.

He did his best to get me home for work events, my birthday, and Lunar New Year. And most importantly, whenever we were confronted by setbacks and complications, he looked for solutions to restore my quality of life even when I wanted to give up. His help was more holistic than I’d expected.

Relief at last

As my pain specialist warned my psychologist, I tend to ask my doctors a lot of questions. But there was an afternoon when he flipped the script and asked me why my pediatric hospital hadn’t referred me to the pain clinic at my current one.

The truth is, I don’t know why I wasn’t referred. But for the first time in eight years, my scalp doesn’t feel like someone is pulling my hair. For the first time in four years, my leg doesn’t feel that way, either. After months of trying different procedures and prescriptions, I can sit for hours once more. And I’m not as scared about my condition deteriorating as I was before; I’ve been through too much with my pain specialist. Better late than never.

As much as I’d encourage those with chronic pain to explore the option of a pain specialist, I wish they didn’t need to see one.

In my next column, I’ll highlight the importance of compassionate nurses for pain management.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.