Some words to know:
Arachnoiditis: a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. It is characterized by severe stinging, burning pain, and neurological problems.
Dural ectasia: is widening or ballooning of the dural sac surrounding the spinal cord. This usually occurs in the lumbosacral region, as this is where the cerebrospinal fluid pressure is greatest, but the spinal canal can be affected in any plane.
Lumbar lordosis: a curving inward of the spine. Also known as swayback.
Ligamentum Flavum One of a series of bands of elastic tissue that runs between the lamina from the axis to the sacrum, the ligamentum flavum connects the laminae and fuses with the facet joint capsules. These bands serve as a covering over the spinal canal.
Hemosiderin staining: Hemosiderin — a protein compound that stores iron in your tissues — can accumulate under your skin. … When red blood cells break down, the hemoglobin releases iron. The trapped iron is then stored as hemosiderin.
Disc desiccation: one of the most common features of degenerative disc disease. It refers to the dehydration of your discs. Your vertebral discs are full of fluid, which keeps them both flexible and sturdy. As you age, the discs begin to dehydrate or slowly lose their fluid.
I had to look those words and phrases up, reminding myself of exactly how bad my spine is.
Let me back up. Last Tuesday, I went to see my doctor. It was meant to be a follow up and a chance to realign my med refill schedule with my monthly check-ups. The appointment was moved to his west side office. I’ve never received good news in the west side office. Not once. This visit was no different.
A friendly resident came into the room and ran through my history. Then she “checked” me – the usual muscle strength and all that. I asked about my MRI results. Her reply was: “I just looked at them and nothing seems negative or out of the ordinary.” Hmm…. okay. As I expected, nothing’s changed. (Note to self: never, never accept the word of a resident. Especially one who doesn’t know you at all).
Doc came in and asked how I’ve been. Blah blah blah. When I asked about the MRI, he pulled up the results on the computer and turned the screen so I could follow along.
Then he went down the list, point by point of what’s WRONG with my back as of 5/31/19. I glanced over at the resident and she looked down quickly and began taking notes.
He scrolled through the images, explaining them as he went along. I wish I’d taken pictures of them. The contrast enabled them to see the arachnoiditis. It was blatantly obvious, no question about it. And there are more renal cysts than last time. “They’re only problematic if they rupture. They’re probably benign. Your kidney looks slightly misshapen, but it could just be the image. You need to talk to your urologist about it though.” Ummm…. okay.
He was still talking but I couldn’t even hear the words, except “I think you should consider getting a spinal cord stimulator. We’ll set up the trial, it’s easy to arrange.” Wait, what?
Then he mentioned “radio frequency” treatments. Hold on. Let’s clarify what that is for anyone who’s unfamiliar with the hellish torture known as radio frequency treatments.
Radiofrequency ablation, also called rhizotomy, is a nonsurgical, minimally invasive procedure that uses heat to reduce or stop the transmission of pain. This procedure is most commonly used to treat chronic pain and conditions such as arthritis of the spine (spondylosis) and sacroilitis.
Exactly as I thought. And no, I will never, never, EVER go through that again. The pain of it, the after flare of it. He looked at me for comment, so I commented: “you’re talking about burning the nerves?”
BASICALLY? Yes. Yes, that’s exactly what you’re talking about. And my response is HELL NO. Nope, nope, and a side order of NOOOOOOO.
How did I get from “nothing out of the ordinary” to let’s get you signed up for a bunch of smaller procedures leading to a surgery to have another device implanted?
Denial. That’s how.
I know exactly how bad my back is. I’ve been living with congenital back problems for my entire life. When my parents took me to the doctor as a middle schooler, they confirmed bursitis in my right shoulder and instructed me to carry less in my backpack. Nothing more in depth was offered or encouraged. They asked me to touch my toes and reassured my parents that I didn’t have scoliosis. That was it. We didn’t know better. We didn’t know anything.
I couldn’t use a Baby Bjorn (or any carrier, for that matter) with our gal because my back pain was SO intense, I couldn’t bear it. Fortunately, she hated those anyway, so neither of us missed out on anything.
But I really, truly, fully convinced myself that I was done with procedures. I walked out of the office after my pump was removed like David Lee Roth in the “Jump” video. Mentally, of course, not actually jumping. Like, “See ya later, suckers! I’ll never be in for another procedure EVER again!” (Never say never, especially against an imagined soundtrack and David Lee Roth leaping across a stage).
I fully resent being back in this spot – having to choose what crap thing I want done to my spine. But I’ve been kidding myself.
Of course, none of this has to be done. Not like last time. I made sure that the laundry list of things going wrong wouldn’t paralyze me if I did nothing, not like last time. Doc reassured me that it’s a matter of pain relief and trying to reduce inflammation. So, technically, I am able to avoid all of it. But should I?
What a mess. I cried as he went through it all. He pulled up a chair and held my hand and said, “all of this will be easy to arrange and the procedures are simple. They should help.” Nothing about this is simple. I said as much. And something that should help may not.
What a mess. I’m at a loss because there’s so much else going on in my life right now. Things I can’t even get into. And now this. The persistent burn, the constant back pain. It’s getting to be too much to ignore. It already is.
But I’m incredibly stubborn. Maybe that’s how I’ve survived all of these years: denial, positivity and complete stubbornness. That is how I’ve done it! Geez. Focus on something else. Keep moving forward. Smile constantly. Never let on that you’re in that much pain. Never give up.
Right now, I have to focus on the show. June 19th. I’m excited and nervous and unprepared and ready. The pain will still be there on the 20th.
This is how it goes, right? We can all relate to that. We manage one spinning plate only to drop the next one while balancing six others.
Wishing each of you NO opportunities to have to learn new medical vocabulary words, tons of balance & calm in your plate-spinning endeavors, and quiet. Blissful, uninterrupted quiet to be able to recharge for the next time. Because there’s always a next time, but we “jump” on.
Peace and painlessness,