August 2, 2022
My body struggled to recover from this last surgery. I pushed my body to the max on my quick decision to rid myself of all medications while dealing with tremendous pain. I had the best support to conquer this challenge with the team of doctors, family, and friends. Like juggling balls, I was juggling arm to arm. The wrist hardware irritated the left wrist with hand weakness and trigger fingers. The right elbow was “off the chart” nerve pain and extremely unstable.
On February 6, 2020, Dr. Chan, my hand surgeon, removed the hardware. It was a simple outpatient procedure. After two weeks, the removal of surgical bandages and sutures. I had immediate relief. On my elbow, if only I could gain elbow stability. My hope was the nerve pain would resolve. I tried several elbow/forearm braces on the market. My search was worldwide, with one exciting, serious communication with a new design from the Netherlands. After several emails and zoom meetings, I was not a candidate; due to the complexity of my injury. I hit a dead end on a supportive brace. Dr. Driscoll contemplated the revised radial head replacement. The complexity of my long-term soft tissue injuries and severe ulnar nerve damage. He decided to avoid further orthopedic surgery, concerned that it would cause more pain. He referred me to a neurosurgeon. I had a zoom meeting. She, too, felt the nerve damage was too extensive to repair. Her advice was to revisit pain management. Adamant about this advice, I had made a promise to myself. I would avoid opioids and pain management treatments. In the ten years, the medications nor treatments provided no relief, only side effects. There was no quality of life on this path.
I had exhausted all options offered in the medical world. I was more than ever intent on my arm being amputated. Whenever I brought it up, people thought I was joking. I visited two Florida orthopedic surgeons; both said no. They looked at me like I was crazy. Why would anyone want to remove their arm electively? I described the constant pain. At times so intense with movement, that it would bring me to my knees even to brush my hair. As if it were broken as the radius bone rolled freely about my forearm. I would get spasms and hand cramps. Sleep was erratic. It was harder not to show the pain on my face, the dark rings under my eyes. In most people’s eyes, I looked healthy. I detested my life, the dramatic high anger bouts to my pity party lows. I guarantee my close family and friends had enough, especially Jeff.
11 years consumed my life in a daily medical undertaking, spending hours of telephone and paper shuffling with insurance on claims/invoices to the many pharmaceuticals issues and medications, treatments, physical therapy, occupational therapy, doctor appointments, diagnostic tests, and surgeries. It is an outright test of patience and maintaining a balance of determination without getting frustrated or emotional. As I reflect, it was challenging to be sharp and pragmatic, to focus and engage with the constant pain and lack of sleep. I admit I was a tad crazy, maybe impossible to live with.
In my internet search, I explored a VA clinical research study with a ten-year success on an innovative lower amputation technique. They were recruiting upper limb participants to include civilians. I emailed a brief synopsis of the 10-year history of my injuries, repairs to my arm, and my reasons for contemplating amputation. Dr. Jason Souza of Walter Reed immediately responded. He called it “serendipity” as he read my email following a return from his presentation on the new upper amputation surgery. They successfully performed their first trans-radial amputation using this new technique. We had a long conversation; he was the first to understand my seriousness about amputation. He recommended I do all my tasks as if I didn’t have an arm. An exercise to prepare for the new reality if I was considered a candidate. Next, I had a zoom meeting with Dr. Matthew Carty of Brigham’s and Women’s Hospital of Boston. He characterized his involvement and passion for this research and the essential evaluation process to determine candidates for amputation. I expressed the extraordinary ten years to save my arm as my quality of life deteriorated from the constant extreme pain and no purposeful life. I had no regrets, just no other options. The next step was a visit to Boston.
In the 1st week of February 2021, I met Dr. Carty for a complete health evaluation. We further discussed my history, my goals, and the amputation challenges. We both agreed that we would further the assessment to determine my participation. It was a full day of several tests X-rays, MRI, EMG, ultrasound, motor skills test, a written psychology test, and bloodwork. On the second day were appointments with an elbow orthopedic surgeon, a pain management group, an occupational therapist, a neurosurgeon, and a psychiatrist. It was decisive by this team and test results. I was a good candidate for their amputation research. I was scared but confident it was my best option.
The big day was scheduled for March 30, 2021. The two-month wait gave me time to prepare. I cut my hair short for the wash and wear; no need for 2 hands style. I tried to accommodate my daily needs as much as possible for one-hand assisted aids. Jeff and I decided to make it an adventure. As to the post-op, I either had to fly back and forth weekly, or we could stay for 5 weeks. While it was heavy into covid. We were able to rent a beautiful condo over 1/2 off the standard charge, cheaper than a hotel and the flights back and forth. We arrived a couple days before surgery for all the pre-op tests. We took this time to explore Boston, ease my mind, and celebrate our 36th wedding anniversary.
I was anxious and excited. The day arrived. I was prepped for surgery and in the operating room at 7:30 am. The surgery took 12 hours. When I awoke in recovery, I could still feel my arm. As I looked down, it was gone, a stump wrapped in bandages. It was the first time with no pain, especially with the anesthesia and nerve block. Life was good. For the next 4 weeks, it was healing with a great distraction in exploring Boston. My kids came to visit. I had weekly check-ups with Dr. Carty, as everything was healing as he anticipated. In the fifth week, the stitches were removed and back home. It was time to live pain-free and adapt as a one-arm amputee.
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