The Best and Worst Medicine has to offer

I’ve spent a long, long time thinking about how I should write this post. Discussing my experience with surgery comes fairly easily…except the piece which involves narcotic painkillers. For the purpose of this post, narcotics, painkillers, and opioids will be used interchangeably to mean prescription narcotic pain medication. 

Throughout my life I have had plenty of surgeries which required the use of narcotics to help manage the pain. As an adult I’ve had a tonsillectomy (arguably and surprisingly more painful than any surgery I’ve had), three anal fissure repairs, endoscopic sphenopalatine artery ligation, four rounds of PRK, TMJ arthrocentisis, and of course, two lumbar fusions. All of these came with a prescription for painkillers. Some of them I managed with just Tylenol or Advil, while some of them I can’t imagine having healed without the narcotics. But my personal relationship with narcotics is complex. I argue that opioids are one of the best things that medicine has to offer and simultaneously the worst. They are powerful, intimidating, scary, fun, miserable, elating, compelling, and oftentimes, necessary. The grip opioids end up having over so many people is astounding. I remain in awe of their power. Every single person should be in awe of their power. Opioids are not your chewable Flintstones vitamins, folks. If I’ve learned nothing else in my personal medical journey, it’s that using opioids deserves as much consideration as having the surgery or treatment in the first place. 

I have always had the propensity to experience every side effect possible with a drug, not just opioids. I’m always in that small percentage of people who get headaches, nausea, vomiting, blurred vision, and whatever else is listed on a medicine’s rap sheet. So you can imagine that I suffer the most intense side effects from intense medicines like painkillers. No matter what type of opioid, I always get the typical side effects first: extreme itching, utterly miserable sweating, constipation, grogginess. These happen the minute I start taking them, not just during withdrawal. The pain relief is wonderful, but those side effects make taking them nearly intolerable. But the part that terrifies me the most is how sublime they make my world. I am 100% someone who gets an immediate and notable high from painkillers. Once, in talking to my mom, I realized that not everyone feels this way on opioids. She was stunned to learn that I get a huge high whenever I take them. It’s difficult to articulate fully, but it’s a feeling of complete contentment. When I take narcotics I want to reach out to everyone I know and talk to them, tell them how well I’m doing, feel as though everything in my universe is at peace. Regardless of the painful surgery or procedure I’ve just had, somehow, with opioids, none of that matters. You float on air and walk on water. And that is why my high is also my low. Knowing you will crash from that high, and have to withdraw from that high is alarming. 

While in the hospital, they often give you IV painkillers for the first couple days. The rush of pain relief when they push the medication is rapid. You can feel the relaxation of it instantaneously, even before they’ve finished pushing the entire syringe. Even when you are able to switch to oral medication, within a short 15 minutes your pain begins to lessen. Let me be clear: These painkillers never make you pain free after a surgery like a lumbar fusion. In fact, the surgeon tells me the goal is to get you to the point where the pain is just bearable enough to function. But the high persists either way. However, once you start the post-operative period is when the clock starts counting down for the day you should be done with the opioids. In general, my surgeon recommends staying on the opioids for no more than two weeks after surgery. You see, the longer you take them the more likely you are to have a difficult time coming off of them. 

My lumbar fusion surgeries were two vastly different experiences regarding use of painkillers. Despite being a veteran at medical care and surgical intervention, I realize now that I had almost no appropriate knowledge of how to manage my narcotic use after such a major surgery. I didn’t talk with the surgeon ahead of time about when I should come off the narcotics, how long to taper them, other medicines that might ease the withdrawal process, etc. I thought I was savvy enough to figure it all out myself. But I didn’t. Instead of recognizing that I no longer needed the painkillers I kept taking them long past when I medically needed them for pain control. I’m not even sure it was a matter of recognition so much as admission. I had trouble admitting that I could be using Tylenol at a certain point. I liked the buzz I felt as I drifted off to sleep after taking the opioids. I liked knowing that the calm was coming as my next dose approached. But six weeks after surgery I realized I was in too deep. Although I was well informed enough to know I needed to taper the painkillers rather than stop cold turkey (never ever stop cold turkey), I didn’t know the appropriate schedule for tapering. In the span of only 7-10 days or so I tried to taper off a month and a half’s worth of habit. My psychologist has explained to me that when you take away a substance like narcotics which your brain has become reliant on, it starts to panic. The chemical dependency begins to sabotage your own body and mind in a desperate plea to get you to keep taking the medicine. Your brain tries every way it can to show you that without continuing the opioid your life will be horrific. Sweating, insomnia, anger, vomiting, nausea, weakness, restlessness, and worst of all deep, all-consuming depression and cataclysmic anxiety. I’ve experienced clinical depression and dreadful anxiety before in my life. It’s practically demonic. But something about the mental health effects withdrawing from opioids creates is unimaginable. During that withdrawal period after my first lumbar fusion I was sick, very sick. In truth, I should have gone to the ER. I reached a point where I was having delusions. I physically couldn’t sit still. And I often thought I might need to end my life to escape the nightmare (that’s actually part of what your brain tells you to convince you into taking the pills again). God bless my mother for helping see me through that dark period of despair. It was clear I had mishandled the use of opioids and the attempt to escape them. Eventually, all the symptoms of withdrawal vanished. Sometimes I look back and very sincerely wonder how I made it through alive. 

But there’s another piece to all of this that needs addressing. The medical community is just as culpable as the patient in understanding the right path to walk while needing to use narcotic medication. Why was the suggestion for how long I should stay on the painkillers not in my pre-op paperwork? Why did the nurse or physician not go over that information when I was discharged from the hospital? Where was any contact information for me to call when I was suffering so immensely? I’ve worked in healthcare for my entire career. If I can barely make it through using narcotics I don’t expect your average patient to make it through at all. There’s a reason this country has an opioid epidemic. Among many reasons, patients are not educated enough to manage painkillers properly. For medicines that alter your entire brain chemistry, patients need clearer, much more intensive instruction beforehand. I honestly believe it’s the fact that I experience icky side effects along with the high from narcotics that has saved me from becoming addicted. I can absolutely see how one could attempt to get off the painkillers, feel the loss of the high, and begin nasty withdrawal symptoms and simply say “never mind, this is too hard, I’d rather continue that blissful existence where I don’t get these symptoms”. I don’t personally blame my surgeon or any of the other medical professionals who have been involved in my care. But I do blame the system as a whole. Everyone I reached out to for help insisted on passing the buck. Called my surgeon’s office? “I don’t know, it’s up to you if you want more pain medicine. Otherwise you can talk to your PCP”. The PCP’s office? “We didn’t perform the surgery, you need to talk to your surgeon’s office”. The Pain Management Clinic? “We don’t deal with prescription pain management, just alternative methods”. To feel like the ER is the only place I could get help just isn’t right. There must be progress in creating a defined process for the use of narcotics. I even asked my surgeon ahead of both surgeries whether I could do it without painkillers. He stopped, looked at me very seriously, and said “I’ve only had a couple people do it without. It’s absolutely horrifying and you really don’t want to do that unless you have to”. I believe him fully. Even with the narcotics the pain after my spine surgeries was unfathomable. But that doesn’t mean patients should have to self-navigate and feel alone. I hope the medical community continues to revise how narcotics are prescribed and used. They are one of the best ways to help patients in immense and acute pain. But they are one of the worst tools once in unskilled hands. 

This time around, for my second lumbar surgery, I marched into my pre-op appointment with a million questions in hand. I talked with my surgeon at length regarding my fears and needs about opioids. I told him I was either walking out of the appointment with a plan for use and tapering off or I was postponing the surgery until that plan could come to fruition. My surgeon is wonderful. He sat and listened to every single question I threw at him. He was clear in how long I should stay on the painkillers and to call him personally with concerns. But what if I hadn’t been such an advocate for myself? Would I have ended up in the same mess as last time? I implore all people who might need to use narcotics to be the best advocate for your care that you can. There truly are no stupid questions. If you don’t have a plan ahead of time, you should wait to have the surgery until you do. Your body and mind are too important. Your life and future are too important. 

I can proudly say I was only on narcotics for one week after this second lumbar fusion. I quickly moved to Tylenol and tapered off on a schedule I found doing research through the Canadian CDC, of all places. Because it’s me, and my body’s MO is to make things as difficult as possible, I still had bad withdrawal symptoms. However, I made it through and the side effects were at least noticeably better than the first lumbar fusion recovery. I respect the power of opioids from a distance. I hope I never have to take them again. I was close to not having this second lumbar fusion for the sole reason that I was sure I couldn’t go through withdrawal again. Although I made the right choice, and handled the painkillers much more seriously this time, it was one of the hardest choices I’ve had to make. When something is so powerfully good, be cautious of the flipside of that coin. Make sure you don’t cross the line from helpful to harmful. No high is worth falling down a rabbit hole you didn’t get the tools to climb out of beforehand.