The temporary spinal simulator implant was taken out and what followed was close to a month’s worth of intense pain. The pain in my legs persisted and the burning, squeezing, and thumping pain in my back echoed throughout my body as I lay on the floor waiting for the permanent implant. The doctors warned multiple times the implant would be stronger, but my body might get used to it and the effect of the implant may decrease, or even start at only 40% – 60% of pain relief. I knew there was no chance of 100%, but as I lay on the floor drenched in pain sweat, I knew 100% pain was getting to be too much to handle. Contemplating living the rest of my life with this was becoming a dark cloud over my existence. I started looking at the clock as a slow timer counting down my days I had left. Days left in this world of torment or until my permanent spine implant would be placed I am not sure, but it was more likely both.
Amanda and my parents took over almost all of my duties around the house. I could no longer stand or cook. I tried making eggs for breakfast one time letting Amanda sleep in on a day off, but my body would not let me stand by the stove for 10 minutes. I remember looking down at the pan, distraught, and felt the emptiness of failure as I tipped the pan towards the trash can and took my place on the floor by the television. I somehow managed to get by letting the days and nights slip away as I marked them off on the calendar. Though just a few weeks, maybe a month had passed, it was the longest time of my life. Going from the feeling of relief from the temporary implant, to being thrust right back into pain upon it’s removal was too much for anyone to bear. The only solace I found was lying on the floor watching the colors dim in front of my eyes and falling into a nap brought on by my pain pills.
I struggled and fought through the days that remained. Amanda reassured me that it will be better soon, my parents kept me company when she was at work, and my sister took time out of her busy day to visit when she could. My friends from Virginia and close to home took on the burden of letting me vent on a daily basis and Ms. S tried to visit on a regular basis. They all took it as normal as I Iay on the floor when they visited. Not one made me feel uncomfortable as I lay on the floor looking up at them on the couch. It was the warmth from them that helped me get through this dark and desperate time.
As all hope of finding relief from the crippling pain was being extinguished, the day finally arrived for my permanent implant. It might have been a rush of adrenaline or the excitement of relief, but I was up, dressed in sweat pants and a loose shirt, and was ready to head out the door first thing in the morning. Amanda and I arrived at the hospital and I was immediately called back. I had told my other family members that they did not have to come as the procedure would not take that long. I was excited and relieved to get the surgery underway. As the routine began for pre-surgery I met with the doctors lying in bed with an IV in me. Each of them went over the surgery and what they were responsible for. It was like the movie Groundhog Day. Through surgeries 1 to 8 no matter what hospital, it was all the same. It was a relief knowing the pre-op process was uniform in all the hospitals in which I had been a patient, which soothed my nerves. In fact it was that I was more impatient to get the procedure underway than I was worried about anything going wrong. Heck, at this point surgery was more routine than going to the dentist for a filling.
After an hour had passed, lying in the pre-surgery room, I gave Amanda a kiss and told her I would be back in a snap. As the nurse wheeled me off, I turned my head and told the nurse as I had many others before her, “When you put me to sleep just do it and do not let me know.”
True to the request, the next moment I found myself struggling against the weight of my eyes to open them up. It was like being in a deep sleep and having someone trying to shake me awake. Before I could even open my eyes I heard a woman to my left ask “Do you feel this in your leg?”
As the question was being processed in my woozy head a sensation of pure bliss entered my body. I felt electricity throughout my leg. The sensation was the feeling of tiny little hands shaking and massaging my legs interrupting the pain. It was finally over, the waiting was done, I had my implant.
Feeling this warm sensation I fell back to sleep. My next coherent memory was finding myself back in my chair with a familiar remote in my hand that connected to an antenna in my spine. Off to my left, sat the most supportive woman in the world: my wife Amanda. She smiled and welcomed me back into the world of living. She told me they had tested both of my legs and my back. She said I was out of it, but was able to respond to questions. I told her I did not remember anything except feeling the first surge of electricity coursing through my body.
Back at home, I rested the remainder of the day into the next. Amanda told me most people do not have a lot of pain after the surgery. It seemed to be true as I was not having too much pain certainly with the pulsing sensation rippling through my body provided by my implant. At least that was until I tried to get up to go to the bathroom. I put my arms on the arm rest of the chair to lift up and out of my molded seat on it. What came next was the feeling of a knife slashing cuts across my back. I howled in pain with such force that it seemed to lift Amanda off the chair and push her in front of me.
“What’s wrong? Are you OK?”
“I can’t get up. I can’t get up, my back it’s ripping! I have to pee!!”
“Here hold on to my arm and lift.”
White light entered my head as I succumbed to the pain. I fell back into the chair, sweating and panting, pleading to her that I couldn’t. What the hell is wrong, I thought. It wasn’t suppose to hurt.
Without a question, Amanda called Dad, explained the situation, and asked him to come over. Fortunately, my parents live only a street behind us. Within minutes my dad was through the door and at my side lifting me by placing his arm underneath mine.
I do not remember making it to the bathroom, I do remember being drenched in sweat and the feeling of my back being stuck against the back of my chair. It was as if my body moved forward, but my skin was stretching all the way down the hall – still attached to the back of the chair. Something I have only seen in a Nightmare on Elm Street movie.
The pain was caused by two big incisions in my back. One for the electrode that was soldered onto my nerves in my spine, the other was for the box that controlled the input from the remote to the electrode. The scars were long and deep. I still have them today which as I write this, is a few months later. Any doctor or nurse who could say the pain would be minimal is a doctor or nurse who never went through it. Amanda and my parents had to come over and watch me at all times to help me lift myself out of the chair so I could go to the restroom. I broke out in pain sweats each time, but I had no choice but to press on. It took three weeks before I regained the freedom of lifting myself out of the chair without the feeling of my flesh being ripped from my back.
As I healed, I learned how to use the remote to the fullest potential. It really helped with the pain in my back and legs, but as each week passed I noticed my old friend coming back again.
Pain. Pain was my old friend. It would not leave me, I could not hide, it would not give up being with me. It refused to leave. It would press through the electricity, it would jump over the waves of pain pills that tried to suppress it, it would stop at nothing to be with me. Out of all the loyal things that surrounded me in my life, Pain was one friend I could always count on to be there.
The implant worked and it helped, but just months after receiving it, Pain, my friend, found a way through it to join me. It did not take long to find myself on the floor again and Pain was there – enveloping me and tormenting me with its claws.
The electricity from the implant flowed through my body like a sword that fights Pain to this day. It is a war between good and evil that battles inside me . There are days where light overcomes darkness and there are others where darkness conquers all. I know without my implant, darkness would be victorious everyday as the pills were never strong enough by themselves. As we near present time, I had a few days that were so bad I called and pleaded with my doctors for help. To me it got to the point where my doctors seemed helpless. One increased my dosage of one pill, another encouraged going to see my pain doctor, and my neurologist had one idea left in him – and that was to prescribe another nerve medication called Trizanidine.
I have been on the new medication for two weeks now. I am pleased to say Trizanidine is the glue coupled with my other medication that has created a shield to go along with my electric sword. It has provided me protection from the worst of the back pain and although it has not defeated pain, for the first time it has held it at bay and stopped its progression. I still have very bad days, and I find myself on the floor most days stretched out, but this new concoction of drugs plus my implant gave me enough arsenal to keep fighting.
I have scheduled next month to have all new doctors look at me. I have put the last year of medical records and radiology images in a three ring binder with tabs separating the body parts that were tested. I am hoping to find a doctor that has another option besides pills. The pills make me drowsy, fatigued, dizzy, and incoherent at times. I was able to get off one of my pills with the introduction of Trizanidine, but I know without the others I would lose the fight. For the first time, I found a doctor that specializes in Complex Regional Pain Syndrome. I have hope once again as I fight with the support of family and friends to regain my freedom from my darkest friend that resides in me: PAIN
It took over a year to tell my story. I will continue to tell it as my life goes on. I still have hope to be relieved from this torment. When I started this journey I had all the hopes in the world that I would be cured by now. Certainly when I learned about the implant. I was determined to end my blog on the highest note possible with a cure. It wasn’t until only a month or so ago I learned that my blog would not end that way. Instead it ends with hope. The second best ending that I could ask for.
I want to thank my family and friends that gave me support on this journey. Amanda has been the strongest ally in my fight next to my parents and close friends, which I am lucky enough to say includes a lot of people. I am hoping you guys know who you are. I also want to thank my readers and those that will continue on my journey with me.
Your support will give me the strength not to give up and the motivation to continue fighting!
From here I will finally be able to expand my blog. I plan on writing reviews about medical equipment, educate readers on insurance and benefits, and continue to spread my knowledge and hope to others. I started this blog to help pay it forward. I want to share a little insight with people who might be going to a test for their first time, having a surgery for the first time, or dealing with chronic pain the first time, on what they might be able to expect and to let them know they are not alone.
Thank you everyone for making this possible and the next entry will be soon!