I first started having intermittent back pain after a car accident in the fall of 2007. I was on my way home from work and the roads were slippery from drizzling rain mixed with dirt. I ended up being involved in a four-car pile-up on Interstate 4, just before my exit. Even though I thought that the impact was not that bad, this event was most likely the culprit that caused a slight herniation of my disc at the L5/S1 level. From that day on, I would get “episodes”, during which my back would completely lock-up, causing excruciating pain and impairment for about two weeks. Then the pain would subside and completely vanish until the next time. I didn’t know why this kept on happening, and due to financial constraints and lack of health insurance (among other things) at that time, it took me until 2009 to seek help and start physical therapy with the most amazing chiropractor in Orlando.
I worked hard to strengthen the muscles around my lower back and neck, and it got me to a point where I was virtually pain-free and without restrictions. Together with my boyfriend I started to participate in adventure races, run 5Ks, and explore the woods by mountain bike. I was doing Crossfit three times a week, and we even got certified in Freediving. In fact, it is fair to say that I was in more than decent shape during that time.
However, all of this changed seemingly overnight in 2012, the year I got accepted into a very competitive BSN nursing program at the University of Central Florida. Ironically, at that time I didn’t realize that I so far I had seen nothing yet in terms of pain.
I can clearly remember the day when I woke up to dull, nagging lower back pain that (from that point on) would never completely go away but would “flare up” after physical activity. It was in the middle of May of 2012, and my boyfriend and I had just moved to a bigger apartment. At first I thought I had a minor version of an “episode”. Personally, I still think that the springs in our old mattress may have gone bad during the move, causing my spine to go into an awkward angle during the night. But in reality I will never know for sure.
I remember the frustration of getting accepted into the nursing program of my choice and having to deal with chronic back pain just before classes started in August. Looking back, the fear of provoking a flare up, coupled with the tremendous stress during nursing school, resulted in me not working out anymore. I also had to buy private health insurance, which was expensive and meager in coverage, so I ended up waiting until 2015 to seek the help of a pain specialist and investigate the changes that must have occurred in my back.
EVALUATIONS AND INTERVENTIONS
To make a long story short, between 2015 and 2017 I was evaluated by a variety of “experts” and was told over and over that surgery would not be needed and that my MRI “doesn’t look so bad”. I still had the herniation at L5/S1 but the rest of my spine showed no significant deterioration. I started Crossfit again in an effort to get strong once more and return to a pain-free state. That clearly didn’t work out, and as the pain continued, I was directed to undergo various interventions in an effort to identify the root-cause of my pain. I’ve had dozens of injections and epidurals, I tried traction therapy, yoga, chiropractic care, three different types of physical therapy, an electrical version of acupuncture, myofascial manipulations, and high-dose anti-inflammatories. I was evaluated for things like genetic diseases, SI joint dysfunction, and facet joint degeneration.
The absolute highlight during those times was a pain specialist in Winter Park, who pretty much accused me of faking pain in an effort to obtain narcotics. Never mind that I was the one emphasizing that I don't want to join the chronic pain medication movement and that I can't take strong medication while working anyways. I needed a diagnosis and then a solution, not drugs! To make matters worse, that doctor was not only extremely rude but actually lied on my medical record, stating that he offered an intervention that I declined. None of this was true by any stretch, and I moved on to the next “expert”. Let me just say that the frustration, humiliation, and fear, coupled with constant, unexplained pain, can wreak havoc on your psyche and can seriously dampen your quality of life. Besides, doing my work as an RN started to become more and more difficult.
THE TURN FOR THE WORSE
I truly have no explanation as to why the quality and intensity of my pain suddenly took a turn for the worse. Toward the end of 2016, my spine decided to self-destruct and rapidly degenerate, causing not just sharp, stabbing pain but increasing disability. I now came with sound-effects, grunting in my sleep whenever I turned (according to my fiance) or while bending or picking up items. I was petrified whenever I felt a sneeze coming on, and I couldn’t tolerate standing in place for more than a couple minutes. Brushing my teeth or washing my face was very tricky because it required me to bend forward without being able to support my own weight.
I work in a busy Emergency Department, and even though I love my job, performing all required tasks had become increasingly difficult. I remember being crippled for three days after doing CPR when a patient was coding. It really took all all I had. My back would seize-up and give out for the rest of the shift when I was slightly bending forward to start an IV. Simple tasks, such as raising the ER stretcher using the foot pedal or pushing larger patients in wheelchairs was now a challenge and caused more suffering. I remember the time when I had to evaluate my patient's swollen ankles and feel for his pedal pulses but I had to realize that I couldn’t bend down far enough to get this accomplished. Since that particular treatment room was quite small, I pressed my back flat to the wall and started to slide down. Well, I did get the job done but I also earned some curious stares from my patient in the process.
My growing disability continued to spread into all my extracurricular activities as well, such as being a medical volunteer at Disney World marathons, my participation in the VA Emergency Response Team, or being a Disaster Essential Medical Personnel (DEMPS) volunteer. I was lucky that I was still able to provide medical care to disabled veterans during the Invictus Games in May 2016 and respond to the PULSE shooting in June 2016. However, in the fall of 2017 I had to turn down DEMS deployments to help out in disaster zones in Texas after Hurricane Harvey and Puerto Rico after Hurricane Maria. This pain had taken over all aspects of my life, leaving me wondering about my personal and professional future.
In my desperation I paid a hefty fee out of pocket to see an osteopath, who wanted to inject PRP blood products into my right SI joint (for $5000) to stabilize my frame and stop the pain. That was around July of 2017, just before a co-worker recommended a pain specialist in Lake Nona, who specializes in regenerative medicine and looked very credible. Thus, before I could commit to the PRP treatment, I made an appointment with Dr. Gayles for one last evaluation, and I am so grateful I did!
THE DIAGNOSIS
Dr. Gayles was the first doctor who actually stated the fact that despite all those previous interventions and evaluations, I still didn’t have a diagnosis. All those "experts" were making mere assumptions and educated guesses as to what the source of my pain may be, relying solely on radiographic imaging and following protocols without ever thinking “outside the box”. So, Dr. Gayles ordered another round of tests, including an updated MRI, a DEXA bone scan, a CT scan, and a Discogram.
Let me just say that a Discogram is not as much fun as it sounds like. There was no disco music or rotating silver-ball over a dance floor involved. Instead, I was flopped on my belly while my L3, L4, and L5 discs were injected with a dye. Apparently, I didn’t bat an eye when L3 and L4 were tested but when the dye went into L5, I thought an electric iron ball exploded in my lower back – crushing it! Well, that concluded the test very quickly, and two nurses helped me get dressed, put on my shoes, and transferred me into a wheelchair. For the rest of the day, I wasn’t able to bend forward without my back giving out, along with sharp, stabbing pain.
Needless to say, during the follow-up visit, my worst fear came to pass. Dr. Gayles informed me that I was way beyond regenerative interventions, such as stem cell therapy, and needed lumbar spine surgery to remove the painful disc and stabilize my spine. I cried from the time of the diagnosis all the way home…, and I was so angry! All those so-called "experts" have misdiagnosed me and only threw “darts in the dark”, hoping one of their intervention would make a difference. If I had just found Dr. Gayles a year before, I may have had the option of regenerative treatment instead of surgery, but that ship had sailed. I now had a new objective: finding the right procedure for me.