I am not sure what to call this post. It is an honest and courageous reflection whose life was almost sacrificed, then saved and then damaged by medical care. It is also an account by someone who has taken their life’s experience and used them in caring for others.
Adam Cifu
Born in 1965 with spina bifida and a myelomeningocele, I am no stranger to pain. My fate would have been sealed had it not been for my stubborn Irish father, a Marine who referred to himself as my Old Man. The preferred method of treatment for a case like mine was euthanasia. Neither the Old Man nor my Catholic mother would hear of it, and at nine days old I had the first of 59 surgeries.1 Although they were warned that I would be a liability, live a life of pain and disability, and barely function cognitively, the 20-something parents decided that my fate would be up to God, period.
I don't need to give any more history for folks to know that I was a "hospital institutionalized" child. Corrective orthopedic surgeries allowed me to ambulate, a urostomy at age 6 freed me from diapers, and the stubborn Old Man gave me balls of steel because he never, ever, allowed me to sit in self-pity. I hated him for it. He began every morning with, “Let go of your cocks and grab your socks…" He expected me to do chores and behave responsibly like every other kid in the neighborhood. I secretly resented him, wishing that the "spina bifida police" would come, see me pushing the mower in the yard, and punish him for spina bifida child abuse. They'd tie a ball and chain around his ankle, and he'd have to drag it while cutting the lawn. I’d watch and tell him to get busy with a bullhorn. And I would be pleased.
So, it was no surprise that I got addicted to opioids.
Opiate use for my chronic non-cancer pain was chasing a ghost. I had pain, I would take meds, I would feel good and be able to function, and then have increased pain and need more meds. The cycle took 18 years to break. For prescribers reading this, PLEASE review the history of opiate liberation and how a bullshit term like "pseudo-addiction" came to be scientific vernacular and how Porter and Jick became one of the most cited articles (really just five sentences) for denying that addiction could occur with liberal opioid treatment for chronic non-cancer pain. An opinion letter became “scientific evidence.” Suffice to say we are paying that price now, as pharma sponsored "experts" touted the holy trinity of addictive drugs (carisoprodol, amphetamines, and opioids) to attempt to treat chronic non-cancer pain.
When emergency bone surgery was necessary three months into my sobriety, I was frightened because the hospital was essentially my crack house. I was more afraid of relapse than pain. And this was a painful surgery. Here is where experience, accountability, and compliance come into play.
1. When faced with that surgery early into my own recovery, I designed a plan based on my recovery, which included support from other sober people, strong connection to my addictions doc, Dr. Greg Collins, and my sponsor. We decided to limit opioids and have strong accountability for pain. Our primary rule was to use post op opioids sparingly; long-acting if possible, never a former drug of choice, and no PCA (nothing like feeling you have control over IV opioids as an opioid addict…bad idea…). A corollary was to avoid the doses for "breakthrough pain" as much as possible; scheduled short acting meds are preferred as that reduces cues associated with active addiction. This stops "clock watching" and reduces the cognitive dissonance for a patient who already possesses manipulation skills used to feed addiction.2
The surgery went well and what I learned became a template for the last 25 years anytime I have needed surgery and opioids.
2. My fear before that surgery was that ANY opioid would trigger me (news flash – they ALL do to a degree, let nobody tell you differently… it’s like dancing with an old lover when you know that dalliance is sure to end badly). I initially told my doctors that I wanted NO opioids. I will never forget Doc Collins saying to me, “Just be a fuckin’ patient; we will help you no matter what.” We do not recover in a vacuum. Accountability was key, and I did not need anything stronger than ibuprofen during the 6 weeks of treatment. My recovering friends brought meetings to me, I spoke with my sponsor every day, and – yes – prayer was huge for keeping me focused on recovery. For me, the best way to avoid iatrogenic relapse is to use the guidelines of accountability, honesty with self, and to avoid any intravenous and short acting opioids. ANYTHING mood altering poses risk.
3. Another important issue, that I saw repeatedly during my practice as a chronic pain and addiction clinician, first presented itself when I was consulting on a patient who had been on a long stable dose of methadone. She had been in a horrific T-bone crash and had several large bone breaks. The treatment team assumed that “the large dose of methadone would be enough” for post op pain management – mistake number one. They then reduced the dose for fear of overdose – mistake number two. The patient was in withdrawal by the time I was called. We managed her by reinstating her baseline dose and titrated additional opioids and adjuvants from there. She ended up doing very well and was able to remain on methadone after healing. I was stunned to learn how little education was devoted to addiction for medical students. I realized that I would need to be heavily involved in my own care should acute pain be an issue for me.
In summary, here is the bottom line that comes from many years of practicing recovery principals in all my affairs. It is what I tell every recovering addict, "If you have to negotiate whether you need it or not for your current acute pain, then you don't need it." I try to make this general, speaking from what worked for me and what I’ve seen work in my professional experience.
Jim Ryser has been known as “Jimmy Ryser” -- a musical artist with a hit song in 1990 and one-time guitarist for John Mellencamp – and also as Jim Ryser after sobriety forced him “to grow up to become a responsible chronic pain and addiction clinician.” Health has forced him into early retirement during which he lives his best life within the boundaries of chronic health problems.
Soon to be 60.
I was a skilled manipulator. At the time he first achieved sobriety, I had 13 different prescribers writing for me. It was a full-time job, one that I never wanted to return to.
Photo by Jonathan Borba
I want to thank Dr. Cifu, who I admire greatly, for inspiring me to write this. I also thank all of the commenters here; it means a lot to know that I’m being the best messenger that I can be / and all I CAN be these days.
Addiction Medicine as a discrete subspecialty has changed hands several times. The current board ABPM, which took over only a couple of years ago, recognizes the importance of this issue, and a significant portion of the board exam is on pain management. This was a particular focus of my fellowship, which is why I trained where I did.
This is a complex and difficult subject both pharmacologically and psychologically, but just because it is difficult does not mean that we in medicine should shy away from the challenge or accept poor outcomes.