A couple of ago Brett Dill was a musician playing with symphony orchestras; today, the pain he’s in causes him to struggle to get through his daily chores.
Dill has neurosarcoidosis, a rare, incurable, life-changing condition that affects the central nervous system. He uses a cane to walk, can only stand for short periods of time and is unable to get the breath he would need to play oboe and English horn full time again.
“I can’t get a full breath and push to support air as much so it’s ended my career as a musician,” he said, on the verge of tears. “As a musician, your job isn’t just what you do, it’s who you are. It’s part of you. For now, that part of me has died.
“Sometimes you don’t realize how much of life has ended until you’re talking about it.”
The pain began in May 2016, when an injury resulted in a herniated disc and slipped discs. Dill had moved back to Nova Scotia to care for his mother, and was doing some work that involved lifting. He tried to work through much of the pain but by mid-August his knees felt spongy and he felt as if he were bouncing when he walked. Some parts of his body were experiencing numbness.
He had a CT scan but nothing was detected. A second trip to emergency resulted in a wait of about 10 hours, and a referral to a neurologist (many months into the future). Sensations of numbness and electric shock were affecting him from the neck down when he saw a doctor again. He was sent for MRIs, which resulted in a trip to the Halifax Infirmary for rapid admittance.
More tests followed, including painful lumbar punctures. There was so much swelling around his spine that it was beginning to affect his brain stem, so he was placed on IV steroids and several specialists showed up.
“The doctors were still mystified,” he said. “That was lucky in a way, because I received amazing attention.”
After two weeks in the Infirmary Dill was taken to a private area and told he had lymphoma and only had days to live.
“When they told me I was going to die my reaction wasn’t what I would have expected,” he recalled. “I became very calm. I started thinking about who would take care of my mother, dog and cat.”
He had asked for a PET scan so it was arranged for that day. After the scan the technician asked how his day was going and he told her about being given only days to live. She told him she thought, “They might have been a bit premature.”
The following day he was told there was a good chance he had neurosarcoidosis. A couple of days later (November 2016) a biopsy made the diagnosis 99 per cent conclusive
“That was a huge relief, but also frightening,” he said. “It’s very rare so not a lot is known about it.”
He was placed on medication, advised to take certain supplements, and went through some physical rehabilitation.
“I may get back to almost normal but I may not,” he said. “ This remains in the body, and can lie dormant or repeatedly attack.
“Nerves are damaged and sending the wrong message to the brain. It feels like electricity non-stop and there’s a lot of pain if I have to engage my core. It’s like there’s a claw constantly squeezing my torso and a team of little guys jackhammering inside my body.”
He can no longer take part in activities he enjoyed, like gardening and hiking, and says he’s lucky his dog is a couch potato. Because it’s not an instrument he played professionally and won’t compare his performance now to what he could do before, he’s been playing the flute.
Along with the physical stress, he faces mental stress, struggling to live on a disability allowance while caring for his mother and having the necessary repairs done to her home.
“Canada needs to pull up its socks in helping people unable to work because of their health,” he said. “I moved from Toronto to care for my mother. If I wasn’t with her I would be homeless.”
“I do feel lucky in that I had the best of health care once admitted to hospital though, and I’m bound I’m coming out of this stronger.”
The cause is unknown and diagnosis is difficult.
Immune cells form around an area the body thinks is foreign but cannot eliminate
Most people who develop neurosarcoidosis have sarcoidosis first
Sarcoidosis is rare and neurosarcoidosis is even rarer
The first case of sarcoidosis involving the nervous system was reported in 1948.