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After enjoying a Labor Day picnic on September 5, 2021, I developed sudden onset of pain in my left shoulder, arm, and neck. The pain became intense, and moving my arm was challenging. Sleeping was difficult, and I didn’t feel like eating. I went to a chiropractor who was unable to help me. Not being able to move my upper arm was very frightening, and I scheduled an appointment with my Primary Care Physician (PCP) on September 9.
My PCP referred me to a neurosurgeon who ordered an MRI which revealed cervical spinal stenosis and spinal cord compression. I was also referred for an EMG to determine if I had an unusual syndrome called Parsonage Turner’s Syndrome (PTS). PTS is a neurological disorder characterized by sudden, excruciating pain in the shoulder, followed by severe weakness. The cause of this rare syndrome is not fully understood.
My head was spinning over this unexpected occurrence with my health. I knew I needed to call ConnectCare3 (CC3), a nurse navigation/patient advocacy service that I had been promoting to our clients for years. I spoke with a patient advocate at CC3, and after completing a medical consent form a nurse navigator contacted me the next day.
The neurosurgeon was ready to schedule surgery, but things were moving too fast for me to consent to surgery at that moment. My CC3 nurse navigator discussed the importance of a second opinion with me and offered a number of well-credentialed options for my consideration. She then prepared questions for the appointments.
Due to the compression on my spinal cord, the next neurosurgeon also recommended cervical surgery. As suspected, the surgery did relieve the compression on my spine but did not improve the mobility of my upper arm. Physical therapy was ordered, and I made some progress, but I continued to experience significant deficits with movement and strength.
The neurosurgeon then referred me to an upper extremity orthopedic surgeon who was also a microvascular surgeon trained to perform complex reconstructions of nerve, bone, and soft tissue injuries. I sought a second opinion provided by my CC3 nurse navigator to confirm I was heading in the right direction. I also had a specialized nerve test. Both highly trained surgeons thought my issue was Parsonage Turner’s; however, the nerve test determined that the axillary nerve within my deltoid muscle was not innervating the muscle properly.
I chose one of the surgeons who, with his skills and proficiency in microsurgery, was able to clean up the nerves to the deltoid muscle and then redirect a healthy nerve from my triceps to the deltoid area to allow muscle contraction. My family and friends marvel when they gaze at my 7-inch scar, and I tell them how a very skillful surgeon was able to accomplish such a feat! Surprisingly, I had very little pain after the surgery which is unusual but good for me.
My surgeon said to expect one year for this nerve to partially regenerate, possibly up to two years for hopefully a total restoration. I have been working hard on my recovery by going to physical therapy 3x/week and have an aggressive home program designed to restore flexibility and keep me active. I am happy to report that just three months after my surgery I have regained about 40% of my strength and would rate my flexibility around 80%. My post-op restrictions are no longer in place, and I can swing a golf club once again… something I feared I would never be capable of enjoying again.
I wish to offer my sincere thanks to my CC3 nurse navigator. I needed an advocate to steer me through the complex medical system. She informed me of well-credentialed physicians for second opinions and resources I wouldn’t have known about without her diligent research. And it was immensely helpful to discuss all my options with her before making a well-informed decision. CC3’s nurse navigation program is #1 in my book, and I highly encourage anyone with this employer-sponsored benefit to utilize the services of these highly knowledgeable medical professionals. My nurse was much more than a resource and advocate as she treated me like family, putting my needs ahead of all else.