heat and stir pain 02
Chronic Pain,  Journal

Pain in the Side: Blog Series 2

In a little over a month, I will have a DRG Stimulator implanted in my back with four leads wrapping around my 6th,7th, 10th and 11th thoracic vertebrae. “Where will you park the actual stimulator,” I ask Dr. Kim (the actual stimulator is a little bigger than a box of matches). “We’ll put it just above your sit-bone on your preferred, non-sleeping side, Frank.” “You realize I’m an ass model” “Yeah, well you might want to find a new career.” Heartless bastard. Alas, such is the state of medicine these days, my ass photography career shall come to an inglorious, before-its-time end. Of course, I’ve never been paid for those cheeky selfies I so generously share with Irene, so the “career” bit may have been pushing it, but just knowing I will now have a permanent ass-addendum that will set off metal detectors and prevent those entertaining MRI sessions, is disheartening. The good news is, I could be in a lot less pain in 5 weeks and that has me freaking the fuck out.

Pain has become my not-so-super power, my unrequested identity, my cross to bear. What if god forbid, I had to let it go? How would I cope with this new “old” Frank? During my 5-day trial period where they inserted two leads into my 7th and 10th thoracic vertebrae respectively, taping the stimulator that will one day deform my “model” ass to my back, the device made the pain in my most excruciating hot spot almost undetectable, and honestly, it scared the shit out of me. That fucking sentence has more clauses than Macy’s has Santas in December, but rather than band-aid that tumor, we’re moving on.

I wasn’t able to get too worked up about this whole “life without pain” fantasy because while my most excruciating pain was effectively negated, the secondary pain in peripheral areas now became primary and fucking intractable. Pain that seemed so tolerable compared to my “hot spot” now flared and glowed like a space shuttle’s belly upon reentry. The medical term for this phenomenon is “Whack-a-Mole Syndrome”, where all pain being relative, should you nullify the most painful spot, the next most painful spot springs up and says, “I’m now the most painful fucking mole, just try to beat me down motherfucker.” Okay, obviously it’s not a fucking medical term, but you get the idea, pain is Whack-a-Mole.

When Dr. Kim implants the device permanently on October 19th, he’s adding two more electrical leads, accounting for one vertebra higher and one lower than the initial trial period. If those additional leads quell the secondary pain with anything near the effectiveness that the initial two leads hit my primary pain, I will almost certainly be able to halve if not completely discontinue my daily regimen of hydrocodone, and those good people, would be a fucking miracle.

I dare not count my pain-free chickens before they hatch, but just fathoming a life without narcotics blows my mind. I’ve always been a control freak, never cottoning to alcohol, pot or harder controlled substances, which doesn’t mean I’ve never used them, but rather that I always err on the side of sobriety. Narcotics have never been a good fit for me, but unfortunately, without them, the pain is so gripping, wrenching and life-altering that life becomes unbearable and suicidal ideation creeps in. So I take the pills, and honestly, I consider myself very fortunate that they actually work for me; they make my pain bearable. I’m also very fortunate that I don’t have an addictive personality because I’ve known people with chronic pain who supplement with pot or booze or cut up their meds to achieve a better high. When you’re using your meds properly, there’s no such thing as “high” just a “thank you Lord” subtraction of pain, the drug and the pain canceling each other out in the best-case scenario. Usually, of course, there’s plenty of pain left, but it’s more tolerable, more tenable.

The DRG Stimulator is brand new here in the states, acquiring FDA approval at the end of 2016 I believe and seeing actual implantation in early 2017 from what I’ve read. The device is similar to the spinal cord stimulator that helped Jerry Lewis with his severe pain, acquired from years and years of on-screen comedic pratfalls and stunts that played havoc on his spinal column. The DRG stimulator is for acute pain in a specific region, like the foot or the knee, or my left side. A more traditional spinal cord stimulator is for pain that spreads along a wider path, like say from your lower back down your leg. The spinal cord stimulator provides significant pain relief for between 50 to 60 percent of those who use it, whereas the new Dorsal Root Ganglia Stimulator provides around 80% pain relief for about 80% of recipients. The DRG Stimulator also has less side effects, like the tingling numbness that spreads beyond the pain inflicted area with the original spinal cord stimulator.

There are possible complications including headaches and higher pain if the stimulator is implanted directly over a painful area, and of course paralysis. The risks are low for all the aforementioned and usually the worst-case scenario is the thing doesn’t work, so you remove it… it’s entirely reversible. Of course, I’m rooting for and planning on all the best-case scenario shit, reprogramming my fatalistic Irish brain to embrace positive change, and hopefully a fucking miracle, but I’m also keeping my Irish Dreamer at bay with some reality checks based on the dramatic pain downtick cum uptick resulting from the 5 day test period implantation. Dr. Kim listened to my concerns and is adding in additional leads to handle the peripheral pain flares, so I hope to be one of the many recipients praising this new technology, that Europe’s had for the last decade of course. Don’t get me started on our damn healthcare system.

One of my greatest unknowns is the affect the device would have on the disease portion of chronic pain, should the stimulator work its magic. Chronic pain becomes a disease unto itself, beyond the intractable discomfort, the body chemistry changes – often permanently. I may still have extreme fatigue, even if I’m in a great deal less pain. My testosterone may still be very low, which was initially caused by intense pain spurring my immune system to suck it all up in attempt to battle the agony. Medication exacerbated the process and now I have to take testosterone so I don’t sleep 12 – 14 hours a day (which used to happen), and I have the urinary complications of someone 15 years older because of the damn drug… how anyone could take this shit recreationally, for some increased bicep mass is beyond me. Another complication from the disease of chronic pain is my Essential Tremor, a side effect of my neurological system burning out way before I might naturally get an old-age hand tremor, again due to my body’s immune system constantly being under attack by pain. I’m quite sure the hand tremor is here to stay, but still hope for a pleasant surprise.

There’s so much I don’t know and won’t know until many weeks after October 19th, so until then, I drag myself to the gym 4-5 times a week to keep my spirits up and my pain in check. I think we’ve caught up a bit, I’ll check back in with you next week and speak to some of my other coping mechanisms you might borrow (besides the exercise I cover in another blog) if you’re also in chronic pain, or someone you know is. Until then, I’m outta here. Take care, don’t take your health for granted, get your ass to the gym, and be your own warrior, but most of all, keep your fucking sense of humor and sense of self, those two things more than any other, will get you through the pain. More on that later, too.