This blog was initially published on Kelly’s website in 2019 and has been updated and formatted for SpineNation. This blog is the final installment of a three-part series. The series chronicles Kelly’s journey of having a thoracolumbar fusion with discectomy and multiple laminectomies. Eliza Daniels Photography in Middle Tennessee took the photographs. The photos resulted from a partnership with Vanderbilt University Medical Center to allow Kelly to record her pre-and post-op journey.
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 middle-aged gentleman behind the curtain next to mine, and boy did he keep Karen running.
I became aware of his presence before I’d even fully re-entered my consciousness because he listened to music or some T.V. program or something on his phone at a loud volume. It was, of course, on speaker. He was trying to convince hospital staff to let him leave on his own after having had some surgery under general anesthesia. I listened as the nurses tried to reason with him, reminding 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, pelvis, and back at all. “It’s a miracle, I thought.” “How long will this last?” I had been through procedures and surgeries that had helped for a time, and the pain had later come back; I was afraid to hope.
I went to scratch my head, 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 an operation on my back? Did something go really wrong, I wondered?
Karen 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 procedure.
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 that 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.
My partner arrived around the same 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 in two sections of my spine. The thoracic spine 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, with 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.) It is uncommon to find a rupture in this area, and especially to find a centralized rupture. (I’m a unicorn, what can I say?)
Our surgical plan was (we thought) to 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 three-level spinal fusion, again, we expected the operation to take about four hours. By talking with my partner, my surgeon, and other surgical team members, I quickly learned that things did not go at all as planned.
Welp, that was unexpected.
MRI images are tricky things, especially since most of them capture images of the spine 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 before this surgery, when the pain other symptoms began in my lower back and left leg. (I was medically gaslit by several doctors for years.)
As a result, the rupture started to calcify and grow bigger and bigger with time. My body was trying to fix something that it couldn’t repair. The mass was quite large, and 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 spacer where the disc used to be. Then, instead of a three-level fusion from the T10 – L1 vertebrae, the doctor fused four levels from the T10 – L2 vertebrae. Additionally, he performed laminectomies from T10-L4. It was twice the surgery we expected. Instead of four hours, it had taken seven-and-a-half. My surgery was similar to a scoliosis revision surgery.
I, 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 patients 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. After all, half of my body wasn’t working; my limbs were becoming useless. But to finally have it validated and proven was a feeling that is difficult to describe adequately. One-and-a-half years later, I am still 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 made me laugh even though it was just a couple of hours after leaving the recovery room, and the pain from sitting up and walking was, I thought, going to kill me.
My floor nurses were so sweet, and occupational therapists 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 from the first night, whom I kept referring to as my angel. She even took photos of me taking my first steps to help document my journey.
I remember my partner bringing cookies for all of the nursing staff because of how well they cared for me. I remember my friend Toby bringing me flowers with plastic spoons spread throughout the bouquet. (A nod to the Spoon Theory and my identifying as a Spoonie.)
I remember realizing that I couldn’t use the restroom independently and that I would have to swallow my pride and ask for help real quick and pull that damn cord by the toilet. Nothing humbles a person quite like having to ask another person to wipe their butt 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 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, most challenging walk of my life.
I was discharged from the hospital on October 25, 2019. My surgery had been on the 22nd. My doctor put in orders for me to have a home-health nurse for five weeks along with an in-home physical therapist. My partner 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 we found and ordered a modern-style, nice-looking zero gravity recliner and medical lift chair on Wayfair for about $350. My mom also sent 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 or have some other medical condition that makes it difficult to get on and off the toilet or in and out of chairs, I beg you: 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.
The first few months were not without challenges. In addition to the furniture and toilet issues (and depending on other people to wipe my butt for me for two weeks, very humbling,) I pulled the muscles in my back two-and-half weeks into recovery. How you say? Oh, you know, sneezing. They had taken a posterior surgical approach, meaning that they had to cut through all of the muscles in my mid-and-low-back to perform the procedure.
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 these 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 have my menstrual cycle 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 four neurosurgeries in 10 months? That’s an insane amount of torture! But it was necessary. And after two weeks, things started looking up. If spinal fusion surgery sounds scary to you, you should talk to your doctor about whether Artificial Disc Replacement(ADR) is an option; in my case, it wasn’t because of the severity of vertebral instability and spinal cord crush injury. If I could have, I would have chosen ADR for a myriad of reasons.
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. Together with the strength I regained in my arms after my cervical fusion surgery months prior, I had four working limbs again. 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 the operation significantly reduced the nerve pain. Dr. Parker told me that I should see improvement with physical rehabilitation for at least one year, and it could be up to two years post-op.
When I walk, I walk with both feet.
I started outpatient physical therapy on December 16, 2019. By mid-January of 2020, I could ditch my walker and walk independently. It was strange getting used to having two legs and feet that I could feel and control again. I had struggled to do so for two-and-a-half years.
I have hit many milestones in the one-and-a-half years since my thoracolumbar fusion. I started driving myself around again by the end of February 2020; I recently traveled by car from Tennessee to Michigan over two days in January 2021. I walk for 45 minutes at a time on the treadmill or out with my new dog, Petunia. I can sit up for about three to four hours per day to write or do other things. (I used to have to lay on my back with my legs propped, 24/7, and the pain still wasn’t controllable.)
One of the coolest things I’ve done is push a 100+ lbs. sled across my physical therapy practice and back four times. That was in April 2020. And I got back to working with my rehabilitative trainer in May 2020. I ended up having two unexpected abdominal surgeries in September and then October of 2020, which set me back a bit. But overall, I feel like a walking miracle and a warrior. I used to live at 10/10 pain, 24/7, and couldn’t control my body’s left side. My new baseline pain level is about three to four out of 10, and I may flare one or two days a week, but a 10 now is not the same as a 10 a year or two ago.
Thanks for following me on this journey. I hope that it helps others feel less fearful and alone as they face or are recovering from their surgeries. 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.
Remember that no surgery is a magical cure-all. It is imperative, in my opinion, that we follow doctor’s orders and keep up with our physical rehabilitation long-term. For me, that includes exercise and an anti-inflammatory diet, and a lot of mindset work as well.
Keep your head up. It isn’t easy, but it’s worth it.