Harrowing stories of individuals surviving hardship and struggle are everywhere, but my life and those of my family, have been wholly shattered by a disease, Reflex Sympathetic Dystrophy (RSD)/CRPS. No one including our Nation’s medical community know enough about this life altering chronic disease. In April 2010 I had my 7th revision shoulder surgery. Waking up from that surgery brought a whole new dimension of pain and anguish into my soul.
I was an athlete throughout high school and college. Athleticism was my outlet to escape the erratic home environment I was raised within. I competed in swimming, water polo, and rowed intercollegiate women’s crew. This period of my life, which I refer to as my “age of stupidity while on a complete athletic high”, I destroyed my shoulder. One dislocation turned into two; before I knew the severity of my actions my left shoulder was constantly dislocating. Yet the idea of ceasing my athletic activities never occurred to me, or was suggested to me by coaches, trainers, or doctors. I would ask for the athletic trainers to tape my shoulder before my races so the tape could operate as my shoulder socket while my arm would dislocate.
Each occasion I underwent a surgery I would dutifully follow all requirements for immobilization, physical therapy, and rehabilitation. I would work to strengthen my body and was continually given a medical release within a minimum of three months to resume any and all activity. In the course of my athletic stupidity, four years of my college career were intertwined with four of my shoulder revision surgeries. Eventually my brain and ignorant heart caught on to my deteriorating body and I abstained from competing competitively, yet will always remain an athlete at heart. I will never give up the ambition and desire to push my body to its athletic potential.
If I were sightless upon awakening from the April surgery, nothing would have convinced me that my arm was not filleted open, bleeding out, hanging worthlessly next to me. The pain I began to experience from that day forward is the most powerful smoldering pain. I am in constant amazement that my body is able to sustain through such constant high levels of pain. The next few months were filled with an assault of testing, poking, prodding and an endless stream of doctors shaking their heads at my arm. It wasn’t until I was begging my orthopedic surgeon to cut my arm off that he actually looked at me like something may be going on here. The true PROPS go to my physical therapist. She was the first person who listened to me, as a person, about the drastic effect of the pain in my shoulder. She spent endless hours working with me, and one day said she thought she knew what this may be.
By this time I had developed a deep red/purple rash and discoloration on my left shoulder and arm. I would have periods where the arm would feel on fire, then be freezing cold covered in goose bumps. The pain was so excruciating I couldn’t drive myself any longer. Most days getting out of bed to move to the couch caused too much pain. I couldn’t sleep for more than a few hours at a time. The pain would alternate between a burning acid running through my veins, to a pain so cold it felt like someone was driving frozen ice pins through my veins. I’m tough; at this point I had under gone seven shoulder surgeries, two c-sections, and an appendectomy. I used to row with my shoulder-dislocated; begging trainers just to tape it up for one more race. I’m not a sissy. In July I allowed my orthopedic surgeon to try an eight surgery to manually unfreeze my shoulder joint under anesthesia and clean up scar tissue in hopes of relieving pain. This only made my pain worse.
I had to quit working the part time job that I had held onto with dear life, since becoming a full time stay at home mom. Being able to leave my house for that one afternoon every other week and speak with adults was pure bliss. It was my mommy haven. The pain and medication made it impossible for me to continue my bi-weekly visits to mommy haven. Instead my world became my bed and my couch while my mother-in-law spent virtually every waking moment of my children’s lives at my home, caring for them and me. I appreciate and love my mother in law dearly. She is a remarkable woman for the amount of love and compassion she has shown me in the past year. She has become like my own mother through this experience. Honestly though no one should have to trade in independence, mommy haven, and feeling like a competent mother, for my mother-in-law all day, every day.
The voyage of wandering through the medical community became my new full time job. I found an interventional pain management doctor and was diagnosed with RSD/CRPS. As soon as I was diagnosed my primary care doctor asked me to find another doctor. At the time I appreciated his honesty in his lack of knowledge about the disease. He told me, “you don’t need a doctor, you need a team.” I then had over 40 doctors verbally tell me they wouldn’t take me on as a patient for my primary care needs only, because of the RSD/CRPS diagnosis, and their lack of knowledge about the disease.
I tried, with every ounce of fortitude I could muster, and completed every test and procedure they then put me through. Unfortunately everything proved unable to lower my pain level. I tried nerve blocks with mammoth needles being stuck through the front of my neck, Chinese herbs and acupuncture, physical therapy, aqua therapy, nerve medications, and every ugly pain medication that the US has to offer. I then read about neruostimulators, or spinal cord stimulators. It’s an electronic paddle implant that is put on your spinal column. The theory being that it confuses the pain signal to your brain. Instead of pain you feel your brain receives a signal of a tingling sensation on the nerves. I was all over research this amazing bionic woman device, and assuring that I took all the steps my insurance required to be a candidate for such a procedure.
I had my amazing orthopedic surgeon refer me to the best neurosurgeon who was versed in neruostimulator. After a two month wait I was able to see him, and finally had a doctor who was educated in neuropathic pain, and he gave me hope of relief. On February 22, 2011 I had the trial stimulator implanted. When it proved to be successful on March 1, 2011 we implanted my final battery pack. As I live six hours from my doctors on March 2 before leaving the area, my aunt, mother in law and myself went and picked up my medication. The rational women waited in the car while I fresh out of the hospital, on morphine, in a cervical collar when in alone. Looking back this was probably not our brightest moment. While walking out of the pharmacy I was robbed. I was holding my wallet in one hand and my bag of medication in the other. We struggled for a moment and by some miracle I was able to keep a hold of my wallet, the bag ripped though and he ran off with my medication. Now this shouldn’t be humorous in any way, and perhaps the morphine played a factor, but there is nothing quite like seeing your 65 your old mother in law and 58 year old aunt (on a cane) go chasing after a 6’2” man running down an alley in Denver!
We filed our police report and were able to get my medication replaced. At the time I didn’t consider the impacts that brief struggle had on my neruostimulator. My only thoughts were get me the hell out of the big city and back to my husband and kids, who I hadn’t seen for 12 days at this point.
When I returned a week later for my post op check up, and reprogramming, things seemed to be off on where I was feeling my stimulation. My programmer though is awesome and she was able to find a programming combination that for the first time in eleven months brought some relief to the pain in my arm. I made an appointment to be back in about four weeks for additional programming and a general surgical check.
The following weeks brought this misplaced joy back into my family’s lives. I was getting about 50% pain reductions from my stimulator, and combined with my medication I was finally able to be Mom again. For the first time in a year I saw my children play at the park, I sat out in the sunshine just of the sheer joy of feeling the sun on my face. This time also brought some fear for me; my stimulation wasn’t what I thought it should be and seemed to be changing. I was having stimulation in my right arm, which is unaffected from the RSD. The stimulation was so intense in my right arm I was losing feeling in my hand and arm. After phone calls to my team of doctors and some entertaining neurological testing over speakerphone, my husband and I were back on the twelve hour round trip journey to see my doctors.
After attempting reprogramming on April 20th, I could see the fear on their faces. They sent me to the hospital to get x-rays. The paddle lead had been shifted from the left side of my spinal column to the right side of my spinal column. They began explaining that they needed to get back in and move the paddle onto the left side, which is when for the first time I felt my light at the end of the tunnel fading and I just lay my head on the exam table and sobbed. This surgery required cutting through all muscle in my neck, cutting a piece of bone out of my spinal column, inserting the paddle lead, waking me up to discuss coverage while I’m sliced open on the operating table. This surgery was the hardest thing I’ve ever gone through in my life, and if we knew each other you would understand the severity of that statement.
I don’t know how many moments of stunned disbelief I sat in that exam room through. I heard them same various things about insurance approvals, CT scans needed, scheduling six weeks out at this point. My husband, who is my biggest supporter, was thankfully being the dutiful patient for us both at that moment. Although I was physically present my brain was somewhere stuck in the world of how I could possibly muster up the strength and courage necessary to make it through this surgery a second time. The six hour expedition home gave my husband and I plenty of time to discuss how we could handle this surgery. I always try to remember at times like these that I’m setting an example for my children always. If I give up now, what future precedent would I set for our family values? So onward I go awaiting my insurance approval and surgery date CT scans. I'm just over this whole damn thing.
My pain is so bad now. Waking up crying in the middle of the night again. I'm in hell.