After completing all the necessary tests, evaluations, and appointments, we scheduled my trial implant. That week with the external stimulator was incredible, it was the first time in years that I could truly feel a difference so quickly. My pain levels were lower, my body felt lighter, and for the first time, I could imagine what life might be like with some control over my pain. When day 7 came and it was time to remove the temporary implant, I really didn’t want to. That alone told me everything I needed to know: the stimulator worked for me, and I could have a successful response to it.
Still, I was so nervous. My surgery was scheduled for September 27, 2010 (one week before my 19th birthday), during my first semester as a sophomore at CSU. To this day, I am still amazed that I chose to stay enrolled through one of the most difficult and terrifying experiences of my life. I missed over a month of classes, but thanks to the Disability Center, I was able to keep going. Even though I unenrolled the previous semester, I was determined to get back into school and continue that path. The center was able to advocate for me, coordinated with my professors, allowed me to take quizzes and exams in their office, and made sure I would continue my semester while I was home recovering. I will forever be grateful for the kindness and compassion they had shown through my entire time at CSU.
When the day of surgery arrived, I was freaking out. The procedure is long, and I had been warned that they would be waking me up, mid-surgery, to confirm that I could feel the stimulation in both legs. I couldn’t stop thinking about the fact that my spinal cord would be completely exposed while they placed the electrodes onto the nerves that will be controlling the stimulation. That was so weird.
I remember waking up in the OR, on my stomach, with Dr. Barolat, his PA, and the nurses quietly talking to me. There was music playing and the room felt warm, calm, and almost joyful. They asked where I could feel the stimulation, making modifications as needed. I then drifted back to sleep once that was done and when I woke up in post-op, I was groggy but excited. Anesthesia has never hit me hard, and I usually wake up calm and clear. After some monitoring, I was taken to my room for an overnight stay.
The next day was a bit tough. The anesthesia had worn off and I was feeling sore and in pain as I tried to stay on top of the medications. It was major spinal surgery, one incision in my lower back (lumbar) where the electrodes were placed and another near my left hip where the battery was implanted. I felt like a robot, trying to learn how to control the device with a remote, adjust stimulation, and charge the battery. Over the next few days and weeks, as the electrodes began to settle in and I was healing, I would go in for follow-ups, adjustments, and work with the reps from the device I had to build out different programs on my remote.
Programming the stimulator was complex and it took time to fine-tune the right programs and settings for my body. Recovery was brutal. I had to be taught how to get out of bed without twisting or bending, every movement was deliberate. The pain from the surgery itself was intense and the importance of minimize trauma in the body was crucial with CRPS being so fussy and reactive. Every day felt like a small battle, but I slowly started feeling better. My stimulator began doing its job and my body felt like it was beginning to relax. I had an amazing chance at a new start.
Backing up some, after graduating high school, I was so excited to attend Colorado State University. Of course, there was always some uncertainty about what each day may bring, but I wanted to live life and chase dreams just as any other person my age. Before heading to college though, I needed to update my immunizations, which meant getting a few shots. One of them, tetanus, was so painful and it would soon become another turning point I never expected.
Thanks for reading.