The Chronic Pain Chronicles, Part 9: The Most Excruciating Pain I've Ever Felt

For as long as I've had back pain (over 20 years), I've had periodic pain and muscle spasms in my upper back. On one occasion, at the chiropractor's office, her assistant attempted to inject a muscle relaxer into a muscle as it was spasming. It was spasming so intensely that when she removed the needle, the muscle spasmed and "spit" the medicine back out. Needless to say, it scared her but I found it fascinating.

This pain was concentrated more on my left side. It was my neck...again. But this time it was joined by the left trapezius muscle, tricep, and bicep. I knew I had a disc situation in my cervical spine from years before. I wondered if biotechnology had advanced to cervical disc replacement. After searching on the internet, I found a website and wondered if I would be a candidate. After using the "Surgeon Locator", I found a surgeon close to my home, at a privately owned hospital.  After several office visits, a nerve injection and physical therapy, my pain got worse. The physician I was seeing, didn't know where my pain was coming from, wouldn't prescribe any pain meds and curtly referred me to a rheumatologist. This painful saga lasted from November to April.

When I got home from the appointment, I called a rheumatologist to get an appointment. The appointment was a week away and that was the earliest appointment I could get as a first-time patient. Before I could get to the rheumatology appointment, I ended up in the ER because I could no longer lift my left shoulder and the pain was unbearable. While being examined by the ER physician, he noticed I couldn't lift my shoulder. He could tell that I was in acute pain but when he asked me to spread my fingers what came next surprised everyone in my room. When I attempted to spread my fingers, the worst pain I've ever felt in my entire life shot through me and all I could do was scream. I can't recall ever screaming like that since I've become an adult but I've never felt pain like that before. After pain meds were administered, a CT-Scan of my neck was done. The CT-Scan was suspicious and it was followed with an MRI. The MRI definitely showed something amiss, but to be sure another MRI was done with contrast and something on the image "lit up like a Christmas tree" I was told.

I'm wheeled back to the ER and a neck brace is immediately placed on me and I'm told to never take it off. An oncologist walks in and says, "You have cancer...and since you may have it somewhere else in your body, we will need to do a CT-Scan of your chest and abdomen." Good grief! Various physicians were coming in so fast that I started recording the conversations. I just didn't trust myself to remember everything they were telling me. The oncologist asked when was my last MRI. I told him when and where it was. He was able to view it and no cancer could be seen on an MRI that was done in November but by April it was very clearly seen.

A Neurosurgeon comes in and explains that I have a "giant cell bone tumor". The tumor itself is benign, the real danger is its location. It's dangerously close to my spinal column and if the disc itself had collapsed, I would have been paralyzed from the neck down. The C5 spinal location is the reason why I have severe pain on the left side and there is a possibility that I could end up with permanent muscle damage.

I entered the ER on a Tuesday afternoon, I was admitted that night and placed in a room Wednesday afternoon. Due to scheduling and a fatal car accident in the city, my surgery date got pushed almost a week out. My pain was off the charts without meds, so I had to be heavily medicated until after surgery. This proved to be problematic. If the nursing staff was late with my meds, I would definitely know because the pain would let me know. Sometimes I would be sleep and instead of giving me the meds, the staff would let me sleep. Bad idea. There were more occasions than I can count when I woke up screaming at the top of my lungs. The hospitalist ordered a PCA pump. That proved problematic because I'd sleep past the time when I was supposed to press the button and I'd still wake up screaming. I was probably the loudest patient on the floor because it kept happening at all times of the day and night.

Surgery day finally came and despite waking up from surgery and thinking I was in the back of a Chinese restaurant, it all went well. The hardest part was yet to come and that was the recovery. By the time I left the hospital, the pain was phenomenally decreased but kinesthetically, I had declined. I could no longer do self-care and it was humbling. Thank God for a loving, compassionate and patient husband who was my caregiver for the first 4-5 weeks after surgery. He literally did everything for me and it was comforting for him to be with me at post doctor appointments.

Right after surgery, physical therapy began. It was intense, tiring and at times painful but I had a physical therapist who felt like my personal cheerleader. "Sarah" was sympathetic, compassionate, down to Earth, easy going,  yet firm, forward thinking and consistent with a stellar sense of humor. Over the months, I was slowly able to take care of my own toiletry needs but being able to lift my left arm from the shoulder escaped me. That became my goal but by the time I finished physical therapy (5 months later), I never reached it. "Sarah" encouraged me to continue therapy at home, so I did. I did the exercises I learned and added some I found on YouTube. Within one month, I was able to lift my left arm at shoulder level all the way over my head. I went back to visit "Sarah" and greeted her by waving my left arm wildly. She noticed right away and gave me a big hug.