I am often asked about the origins of my interest in pain and pain research. It’s a complex question and it fits in with my past experience: I tend to be interested in issues that both intrigue me intellectually, and that I have, in some way, experienced.
We have all experienced acute pain unless we’re one of those few unlucky people who are born with congenital insensitivity to pain. Since acute pain is in part adaptive–a warning–it makes sense that acute pain is common. Moreover, acute pain is, in most cases, easy to treat, though it still appears to be underrated, at least in hospitals in the US, as survey data demonstrate. As colleague and co-author John Loeser, MD (Neurosurgery/Anesthesia and Pain Med, U Washington) puts it, no other group of medications are as effective as opioids in the context of acute pain.
Chronic pain–as currently define, pain that lasts more than 3 months or past the point of tissue healing–is far more difficult to both understand and to treat. And that is one of the things that has drawn me in.
Back to the central question, though. How did my interest develop? There aren’t many pain epidemiologists, so the niche is relatively unoccupied, which is fortuitous for me, and for anybody who wishes to enter the field.
Two things happened almost at once. I was asked to join a team of researchers at Washington who wanted to investigate small area variations in the rates of lumbar spinal surgeries. It was a project that drew me in. We documented the fact that even after adjusting for demographic and epidemiological variables, there was an 11-fold difference between counties in Washington State in the frequency with which a set of low back procedures were performed. And this was interesting. John Loeser, who is one of the founders of pain medicine as a field of study and of treatment, drew me in a way that intrigued me, enticed me, and stimulated me. In addition John is one of the most well rounded people intellectually whom I have ever met, as well as being passionate and enthusiastic about understanding and treating pain, and spreading his knowledge to practitioners around the world. This combination appealed deeply to my intellect and to my love of learning, and learn I did. And so history went…..the topic, and John’s charismatic mind and compassion for his patients, both attracted me.
There was a personal dimension, too. I became the team guinea pig for acute pain and for low back procedures–and for under treatment and neglect of acute pain. At the time, I experienced significant pain from nerve root compression from a herniated disc. The distribution of my symptoms, and the appearance of the MRI were consistent with one another. After about 8 months of acute and limiting pain, with conservative care, including PT not working, I decided that the condition was impacting my life and my activities in a way that was sapping me of energy, sleep, fitness, and verve. Thus, I decided to explore surgical options, and, after talking to a few spine surgeons, I decided to proceed with one of the earliest minimally invasive decompression procedures. This turned into a nightmare, though I do not think that it was the wrong decision. The surgery was done under deep sedation in one of the main operating rooms. I remember one point during the surgery in which my left leg did its own screaming, because apparently it was being assaulted, but I have no memory of the procedure after that. Within a few hours after the procedure, I was in the most severe agony that I could imagine–the classical 10/10 patient on the “what’s your pain level from 0 to 10?” This was far worse than any pain that I had experienced in the prior year, and in addition, I had lost some sensory and motor function in part of the affected leg in a distribution consistent with the area that was being addressed by the surgery. And that is where the real trouble began.
It was a week of nightmares and unbearable pain, and some attendant fear. I was discharged home within a couple of hours after the end of the outpatient procedure. And the pain got worse and worse and worse. The neurological compromise did not resolve. It was obvious to me that the surgery itself had done some damage.
This damage, however, was not the most disconcerting part. The truly disconcerting part was the insensitivity of the medical staff to my acute pain. I could not turn over in bed at home without going into severe spasm, and without the hottest rod or sword that you can imagine penetrating deeply into my sciatic nerve. I contacted resident after resident, and all that they could say was that it would probably go away, and just take some acetaminophen with codeine–one of the so called “weak opioids.” And I lived like this for a week until I could no longer go to the bathroom without crawling–literally– for an hour and shrieking in real agony. I remember sleeping in the bathroom one night to avoid having to crawl It was hell. I felt that it would be inappropriate to call colleagues from our research team for advice and help, so I just tried to meditate, breathe, hope. Music gave me hope–especially Bach and Mozart.
Finally, on the 8th postoperative day, I called a neurosurgeon colleague at home who served with me on the Ethics Consult Service (I headed it) at one of the community hospitals in Seattle. And he told me to come right into the ER, by medic unit, if necessary, and he would admit me to his service. I learned that it is possible to think of a hospital stay as a healing and a positive experience, you can understand the essence of what post op week number 2 was like. I was admitted for pain control and for neurologic assessment. I had patient controlled analgesia with either morphine or hydromorphone (Dilaudid). I cannot remember which. And within a few hours, I felt relief. Not total, and I could control how much–I went for enough so that I was uncomfortable, quite conscious of and responsive to my surroundings, but with much attenuated pain. The CEO of the hospital even sent me a champagne brunch while I was in-house. I thought that mixing champagne with morphine and diazepam (Valium) would probably not be the best idea, even though the code cart was right outside my room, but my visitors enjoyed the champagne. Imaging showed that there was very recent damage to my L-5 nerve root consistent with what was done during my procedure at The Other Hospital. Living the experience was interesting, in a way, because I got to feel what I was writing intellectually about–lived experience has some value. By the end of the week, I was presented with the option of proceeding with further surgery, or going home and opting for conservative care. I chose the latter. By the next week I had chosen a physiatrist, entered physical therapy, continued a gentle and “graded” gym program, and doing things that were meaningful to me. One of those was to continue learning from our surgery project.
The whole experience was deeply disturbing, and felt existentially threatening. I went home 8 days after I was admittedq, and I cried when I got home. I had become very thankful for what I had. But the experience changed me, and angered me. It seemed to threaten my integrity, my autonomy, and my existence. What made me angry was not the adverse surgical outcome. That is what informed consent is all about, and there is always the risk of damage. I could accept that, and did from the beginning. What shook me profoundly, though–I think that it caused a pseudo, loosely defined PTSD–was the indifference to and ignorance pain by the service at the hospital in which I had the surgery. The attitude was the classical “it’s only pain. You can live with it. Nobody dies from pain (which is not true).” I experienced what I hope nobody experiences again: uncontrolled post-surgical pain from inadequate treatment due to indifference, due to an underlying cause of ignorance of pain. I was told that I could not possibly be experiencing the pain that I was relating. I will write more about the inherently subjective nature of pain in a subsequent blog post. The attending and the residents were more interested in operating than in treating the pain of a post op patient.
Once word got out Original Hospital that I had been admitted to The Other Hospital, I began getting cover your ass phone calls. Apologies from the chief of service. Deep regrets from several attendings at The Original Hospital. And I think that these well meaning individuals were indeed sorry that I had experienced an underbelly of the system. I accepted these calls gracefully and suggested that had their service been this concerned in the first place, all might have benefitted. The one person who did not call was the attending who had performed the surgery, though everybody told me that he was “very worried” about me. I just wanted to get better, though. I did not care who called me or who did not. And I also wanted to understand. To learn. And to share that learning. I have no doubt that these well meaning individuals truly were sorry that I went through the experiences that I have related here. I also know that they never really understood the underlying cause: systemic lack of knowledge of the nature of pain, and the importance of treating pain adequately.
So, it was partly because of this experience, and to honor the enthusiasm that I had developed for a new and intriguing health issue catalyzed by a brilliant, charismatic, compassionate, and productive co-founder of interdisciplinary pain medicine that I vowed I would become deeply involved in pain research. And through that research, I not only found a mid-career mentor, but also a close friend. The wonder about pain–its causes, context, treatment, understanding–is still there. It’s mysterious. And mysteries draw me in almost inevitably. In the end, I have come to think of my own suffering during that period as something without which my career and passions would be different.