Hospital Life Part II: Surgery & Post-Op
My left hand with an IV, just before being wheeled off to surgery. Photo credit: Eliza Daniels Photography.
When last we met, I was drifting off to sleep in the operating room.
All I remember about waking up in post-op recovery is that it hurt like hell. I mean, all I could do was moan and raise my voice and say, "pain." I may have been crying. My nurse in this area was named Karen, and Karen was an angel. There was an entitled caucasian Boomer behind the curtain next to mine, and boy was he keeping Karen running.
I became aware of his presence before I'd even fully re-entered my consciousness because he was listening to music or some T.V. program or something on his phone. It was, of course, on speaker. He was trying to get the staff to allow him to leave on his own after having had some surgery under general anesthesia. I listened as the nurses tried to reason with him, remind him that he knew he would need a ride and a responsible adult.
I heard Karen plead with him, "Sir, I have a patient (that was me) who just came out of very major surgery, and she needs me right now." He laughed and balked at her. "You could just let me leave then." She walked back through my curtain to apologize.
Karen explained that in addition to the guy who was threatening to leave, they had just initiated a new medication management system that took longer to dispense pain medications than the old system. I stopped her, grabbed her hand, and said quietly:
"Karen, you're an angel, and you're an excellent nurse. It's not your fault that he's a turd, and I know you're trying to help me. You'll get me the meds as soon as you can, I know."
I dozed off for a moment, and when I came to, I wept.
Karen was finally able to get the pain medications delivered through my IV, and I almost instantly felt some relief. I drifted off to sleep, and when I woke up again, I started to cry. It was the first time in nearly three years that I didn't feel the debilitating nerve pain in my left leg at all. "It's a miracle, I thought." "How long will this last?" I hoped that it would last forever but knew that this was probably too much to hope for. Still, it felt amazing.
A single red shiny star balloon waited for me when I arrived in my hospital room. It was the only splash of color in an otherwise institutional space. We had seen them in the surgical waiting lobby and I said, “I want a red star balloon.” I should have known that Nathan would oblige. Photo credit: Eliza Daniels Photography.
I went to scratch my head, though, and dried blood was on my forehead. Then I noticed dried blood and bandages on my neck and in other strange places like my hands, arms, and legs. I heard the alarm in my voice when I asked Karen why there was dried blood on my head. After all, hadn't I been here for operation on my back? Did something go really wrong, I wondered? She calmly reminded me that while I was in surgery, the team inserted several electrodes in various parts of my body to track my neurological responses and ensure that my spinal cord was sending and receiving signals as it should throughout the operation.
I dozed off again for a moment and awoke with a start to see my dad's spirit alongside my dog Rosebud (who passed in February of this year) standing next to my stretcher. They were with me, and they were letting me know it in no uncertain terms. I wept again, and Karen walked in and asked what was wrong. "You may think I'm crazy," I said, "but my dad and my dog are standing next to my stretcher."
She didn't think I was crazy. She told me about her dog that took care of her, much like Rosebud had taken care of me through the years. She recalled that when she worked in the Trauma E.R., some nights, she would come home so drained from it all, exhausted and sometimes sad, that her dog would lay and hold her for hours.
Nathan arrived around the time I realized that it felt like it had been a long time since I'd gone back to the O.R.
I went into this experience believing that I would be in surgery for about four hours and that my surgeon would be fusing three levels of vertebrae; the thoracic spine is the part of your spine that holds your ribs and all of your organs where they're supposed to be. It's not mobile; it's stationary, so you don't expect to lose much range of motion when you have a thoracic spinal fusion. It's still a super intense surgery, though, and doctors don't decide to operate lightly. There are discs in between 12 vertebrae in your thoracic spine.
The lumbar spine is your low back, lots of movement there. There are generally five vertebrae in your lumbar spine, but I am a mutant, so I have six. It causes my spine to have a more accentuated curvature, and I'm convinced that this has contributed to some of my spinal issues. Going into surgery, we knew from images and clinical symptoms that I had a super rare type of rupture, a centralized rupture, of the disc between my 12th thoracic vertebrae and 1st lumbar vertebrae (T12 - L1.) This location is also an incredibly rare place to find a rupture. (I'm a unicorn, what can I say?)
Our surgical plan was to (likely) remove the ruptured disc and any surrounding debris in my spinal column. Then, the surgeon would fuse the vertebrae from T10-L1 to stabilize my spine. Referred to as a four-level spinal fusion, again, we expected the operation to take about 4 hours. I quickly learned through talking with Nathan, my surgeon, and other members of my surgical team, that things did not go at all as planned.
Welp, that was unexpected.
MRI images are tricky things, especially since most of them are captured while a patient is lying down inside an MRI tube. You don't always see what is there, and this was the case with mine. The disc in my spine likely ruptured about three years ago, when the pain other symptoms began in my lower back and left leg. (Every doctor who medically gaslit me during this period can officially kiss my ass.)
As a result, the rupture started to calcify and grow bigger and bigger with time. My body was trying to fix the thing that couldn't be repaired. The mass was quite large, and it is my understanding that it was crushing my spinal cord, spinal nerves, and all of the other biological elements in that area of my spinal column.
My surgeon had to very carefully remove this enormous mass of calcium, bone, and soft disc tissue from my spine, and place a titanium spacer where the disc used to be (referred to as a discectomy.) In addition to the three-level fusion from the T10 - L1 vertebrae, the discectomy, and placement of the titanium spacer, my surgeon removed bone from multiple vertebrae to make more room for my swollen, deformed spinal cord. These procedures, referred to as laminectomies, were performed from the T10 - L3 vertebrae. It was twice the surgery we expected. Instead of 4 hours, it had taken 7.5.
I, dear friends and readers, was not crazy. I was not delusional, and I had not invented symptoms to avoid working. I was none of the things that so many specialists and my (former) primary care physician had accused me of being. Just because I have a uterus doesn't mean that I am hysterical or don't know my own body. I had been right all along; they couldn't see it, so they decided that it wasn't there.
I want to say this very plainly and boldly so that it sinks in:
Medical Gaslighting happens every day, and it kills and disables women permanently.
I'm here to stop it.
The beginning of the healing.
I was shocked but not shocked all at the same time. I knew all along something was very wrong inside of my body. Half of my body wasn't working, after all. But to finally have it validated and proven was a feeling that is difficult to describe adequately. I am still, two months later, processing the relief, gratitude, and anger that came from this surgery.
I spent three nights in the hospital under the care of the kindest and sweetest nurses. The X-Ray team, my floor nurses, the occupational therapists that helped me learn to walk and take on stairs again... even the janitorial and food service workers were kind. Memories of those days are fuzzy and jumbled together. I was in so much pain and on so much heavy medication.
I remember a nurse named Clayton, whom I kept referring to as my angel.
I remember Nathan bringing cookies for all of the nursing staff because of how well they were caring for me.
I remember my friend Toby bringing me flowers.
I remember realizing that I couldn't wipe my ass and that I was going to have to swallow my pride and ask for help real quick and pull that damn cord by the toilet. Nothing quite humbles a person like having to ask another person to wipe their ass for them.
I walked for the first time on the same night as my surgery. I made it from my bed to the hallway to get on a stretcher and was whisked off to the x-ray department. I walked back from the gurney to my bed when I returned to my room. That was the shortest, hardest walk of my life.
Baby steps.
I discharged from the hospital on October 25, 2019. My surgery had been on the 22nd. Orders were put in for me to have a home-health nurse for five weeks along with an in-home physical therapist. Nathan and I felt wholly unprepared for my discharge. It felt so scary to return home and leave behind all that help and those nurses.
We discovered quickly that our stylish modern furniture was not the furniture one wants to have to get in and out of after major thoracolumbar surgery. The doctor's orders were for me to sit up to eat every meal and walk a bit around the house every one to two hours whenever I wasn't sleeping.
I'm no stranger to pain, but those first two weeks of recovery made me question everything I thought I knew about my strength and resilience. It was worse than the preceding two and a half years combined. Getting in and out of a seated position on our existing furniture was nearly impossible, and I yelled out in pain every time.
Thank God Nathan found and ordered a modern-style, nice-looking zero gravity recliner and medical lift chair on Wayfair for about $350. My mom also ordered toilet seat risers from Amazon the day they released me from the hospital. There is one with no handles, and another with handles to help with standing up from the toilet. If you are a spine rehab patient, preparing for surgery, or have some other medical condition that makes it difficult to get on and off the toilet or in and out of chairs... I implore you to swallow your pride and order the things you need to reduce your pain and fatigue. Without these tools, I would not be recovering as well as I am.
Ups and Downs.
Three days post-op, the day my bandages came off. You’d be surprised how many Spoonies have an allergy to adhesives. I’m one of them, which is whey there is a red rash surrounding my incision. Those are steri-strips holding the incision together, and I was instructed not to remove them but to allow them to fall off on their own.
The recovery up to this point has not been without its challenges. In addition to the furniture and toilet issues (and depending on other people to wipe my ass for me for two weeks, very humbling,) I pulled the muscles in my back 2.5 weeks into recovery. How you say? Oh, you know, sneezing.
I had to go through two prednisone steroid taper packs to get the inflammation back down and get myself on the road to recovery again. If you've never taken steroids, then you won't understand that they are, in fact, Satan's Tic Tacs. They do their job, but holy hell do they make you miserable while doing it. I was extra lucky because I got to be withdrawing from narcotic pain medications and on my period while on the steroids. I think I cried for a week straight — so much fun.
During the first two weeks of recovery, I questioned my choice to have the surgery daily. Who has three neurosurgeries in ten months? That's an insane amount of torture! But it was necessary. And after two weeks, things started looking up.
Three weeks post-op or so. The rash was still healing. I can’t tell you what a relief it was to get all of the adhesive off and wash my back, finally, after about four weeks.
When I had my six-week post-op appointment with Dr. Parker, my exam went amazingly well. All of my reflexes were normal again, no more foot drop in my left leg, an equal sense of touch in both legs, and much less nerve pain in my left leg. It turned out that the lack of nerve pain would not last forever, as I'd hoped it might when I first woke up from surgery, but it is significantly reduced. Dr. Parker feels it will only get better as I continue rehabilitation and therapy.
When I walk, I walk with both feet, even if I do still need my walker to help keep me balanced and steady most of the time. I started outpatient physical therapy on December 16. In the next of this series, I'll talk more about physical therapy and recovery from that aspect, especially while at home.
Thanks for following me on this journey. And to all of those who have reached out to thank me for giving them a voice, or helping them better understand Spoonie life for themselves or loved ones, thank you. Keep your head up. It isn't easy, but it's worth it.
Please enjoy these images of my magical chair. I highly recommend that anyone with spine or arthritis issues, or recovering from surgery, get their hands on one. All images courtesy of wayfair.com.
