It started with numbness in my fingers. I used to box so wrote it off to repetitive strain. From time to time I’d have other symptoms, from dizziness to fatigue to strange, painless ocular migraines.
Everything changed one Christmas when I started experiencing severe shoulder pain. I treated it with pain killers and went to a physiotherapist. I had conservative treatment but the pain got progressively worse. An orthopedic surgeon diagnosed a rotator cuff injury and I had arthroscopic surgery to repair a minor tear in the supraspinatus tendon.
Within two weeks my pain levels were unbearable without opiate medication. I consulted a neurologist who diagnosed Guillain-Barre Syndrome (GBS) and started chemo treatment. The GBS diagnosis was confirmed by spinal tap protein evaluation. As a precaution the neurologist sent me to a nearby hospital with a larger MRI scanner for a full spinal scan (I’m 6’4” and 120kg/260lbs). After several hours, I had a consultation with a neurosurgeon who explained that I had a tennis ball sized mass on my cervical spine and that it would soon crush the spinal cord and paralyze or kill me.
I was immediately admitted to ICU, many tests followed including a CT guided biopsy. The work up took a week; none of the team had ever encountered a chordoma. On receipt of the confirming histology I was advised of my options: death, paralysis or radical surgery to remove the tumor and infected bone. During this period my symptoms were rapidly escalating with my arms and legs becoming paralyzed.
I had tumor resection surgery as well as a double vertebrectomy and total fusion of my cervical spine (C2- T1).
I had a recurrence a year later and further resection surgery and radiotherapy. There are remaining tumorous cells but I have routine scans and they’re in stasis. My body is profoundly altered, but I’m alive.
I’m forever changed. My neck doesn’t move properly, my left arm is largely paralyzed. I go to therapy every day of the week. I get really tired real quick. I am in psychiatric treatment for trauma and depression. I still participate in running my construction and engineering business but I don’t drive, so my input is limited.
I was an active person: I boxed, hiked and scuba dived often as well as participating in a variety of other outdoor activities, none of which are now possible, although I have started taking hour-long walks around my neighborhood.
My family has been great. The medical team was superb. I went to a retreat for a week which got me moving again. Occupational therapy and hydrotherapy bring relief and I’m slowly getting stronger and more mobile. I take SNRI medication to assist with feelings of helplessness in the face of this disease. My advice is: Don’t ignore symptoms. Do the rehab work. Watch out for depression.
