On January 4, 2022, my spinal cord was de-tethered.
Once again I asked to be taken into the OR awake, it was comforting to meet my surgical team and so intriguing to see the inside of the operating room. Dr. Patel showed me the flimsy dark glasses that he would be using in the procedure. They looked like 3D glasses. I had a different anesthesiologist during this surgery, so my pain regimen was very different. For the second time in the last twelve months, I drifted off into a deep surgical sleep.
In the recovery room, I woke up screaming and felt completely unmedicated. I thought that I would be loopy and sleepy after waking, but I was terribly wrong. The pain medications weren’t working. Why, I did not know then, but would later come to learn that I had opioid-induced hyperalgesia. Opioids had lost effectiveness for me.
Frantically, I told my medical team in the recovery room of my tremendous pain, and the medications weren’t helping. No one believed me. They told me that the meds were helping more than I thought and there was no way that these strong meds would simply not work on someone my size. I remember explaining derivatives from my calculus class to try and convince the nurses that I was cognitively aware and undermedicated. Discouraged, I sobbed and wailed. My parents were confused, undone, and searched for answers.
A catheter had been placed during the surgery because I would have to lay completely horizontal for 24 hours in order to avoid a CSF leak. This would be easy for me, as my headache pain was better while horizontal. A drain was also placed coming out of an incision in my back. My family and I had expected this surgery to be far less painful than my skull-C3 fusion, but we were horribly wrong. The pain consumed me. It was an indescribable kind of stabbing and burning. I prayed repeatedly that God would let me die and release me from this torture. Awake all night long moaning and crying, it felt impossible to continue like this.
I begged for different medications for pain, but no one knew what to give me. Morphine, dilaudid, oxycodone, valium, fioricet, robaxin and other medications were not touching the pain. Dr. Patel came to check on me three days post-op, and he was saddened to see my lack of progress and pain control. Ultimately a Fentanyl patch was placed which caused me to go into a slightly overmedicated state. This scared my family and medical team, however, I was thrilled to have some relief and gratefully fell asleep. It was about 12:30 AM when my mom, in the chair beside my bed, heard this strange noise. Thank God she was awake late working and heard me. It was a gurgling sound. Evidently, I was vomiting in my sleep and choking a bit on it. She freaked out, got the nurse and the fentanyl patch was removed. The gravity of the situation and what could have happened shook my parents. My mom didn’t go to sleep that night. She was petrified that I would vomit again and suffocate. Pain management was so difficult then and continues to be such a challenge.
The drain in my back and catheter were removed after the third day. This process was uncomfortable, to say the least. The incision from the drain hurt worse than the surgical incision. Most patients only stay in the hospital one or two nights after this surgery, so we were expecting a short stay, but this would not be the case for me. The pain was more intense than my skull to C3 fusion. Elevating was so painful and I couldn’t sit up at all but knew that was one of the milestones I had to cross before I would be released from the hospital. Early on, I knew the surgery was a success because there was feeling in my legs and I could move them better than I could previously. Also, the nerve pain on my skin started to feel so much better. Although the post-surgery pain was more than expected the week after the procedure, I am glad I had it and grateful Dr. Patel diagnosed it and was the one to perform it.
Six days went by and I still remained completely horizontal. PT and OT came by many times, but I made no progress. I wanted to go home so badly because the pain meds in the hospital weren’t helping and I would much rather be in pain at home than at the hospital. However, my medical team said that I was nowhere near ready to go home. I begged them to take me off all of the pain medications they were giving me, as they were not helping, yet I was experiencing side effects. They were concerned I would be in more pain if I got off the meds, but I knew my body. That night, I discontinued every pain medication.
In the early morning, Dr. Patel came to check on me, and seemed discouraged by my lack of progress. He believed it unlikely I would return home soon. A few hours later, a miracle occurred. With a surge of unexplainable energy and strength, I turned to my dad saying that I was ready to sit up and thought I could do it. He looked at me shocked and in disbelief helped pull me into a sitting position. We smiled from ear to ear, mind blown by my rapid progress. I felt so much more alive off of the pain medications and told my dad that after a week in the hospital, I was finally ready to go home. When PT and OT came to work with me, they were astonished; only a day ago I could not even roll over and now I was sitting on the edge of the bed. I persuasively explained my desire to return home, so they paged Dr. Patel for a response. When he walked into my room, his eyes lit up, excited by my energy and breakthrough. He examined my incision one last time and put in the discharge orders. Although the pain was still tormenting me, I knew that I would recover more quickly surrounded by family in the comfort of my own bed. Being discharged was ‘a win’, but the battle was not over yet.
