The chronic, lifelong facial pain Mandy Dostie endured as a result of growing up in a severely abusive household was so intense that the Barrie, Ont., woman had considered medical assistance in dying, but a unique surgery — the first of its kind in Canada — means she can now live a “normal” life.
“I ended up feeling the cold on my cheek (without pain) for the very first time since I was a child and nothing will ever replace that,” she said, sharing just one small example of the experiences she was deprived of before the surgery.
“It tickled my cheek.”
Dostie spent decades trying to address her pain. After leaving home as a young adult, she began to try to find relief for what began as ear pain that felt “like an icepick.”
At one point, she said she spent about two years on ear drops as doctors attempted to treat her for ear infections. The pain only worsened, radiating through her face and leaving her nose feeling like it was burning and numb patches on the back of her skull.
“I couldn’t go outside in the wintertime without being in pain. I couldn’t play with my kids. And I was on so many painkillers that I couldn’t think. I wasn’t me anymore,” she said.
She continued to look for answers, travelling to see specialists across Ontario. She also faced hurdles with getting her pain taken seriously as some doctors, she said, assumed she was drug-seeking.
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Finally, she saw a post in a Facebook group for fellow sufferers of trigeminal neuralgia talking about a doctor in London, Ont.
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Dostie got a referral to Dr. Andy Parent at London Health Sciences Centre and had a consultation about a fairly invasive surgery. She decided to think about it, but after five years, the pain became so unbearable she concluded it was worth it.
“There’s no amount of narcotics or cannabis that could take away this pain. It was constant. So before looking at other options like MAID, I decided, ‘Let’s go do it.’ But then when I got there, Dr. Parent was close to retirement and he introduced me to Dr. Lau, who had an even better plan.”
Dr. Jonathan Lau, neurosurgeon at LHSC, went back to an idea that had been floated in the 1980s and 1990s, but that couldn’t be supported by the technology at the time.
“We do spinal cord stimulation for patients who have a similar pain as what Mandy is describing, but in the arms or legs,” he explained.
“The idea was to propose a stimulator that could stimulate the same area as her pain area.”
That meant inserting the stimulator “deep in the skull,” with a wire passing under the skin behind the ear and the batteries just below the collarbone. While they don’t know exactly how the device is able to relieve the pain, the belief is that the electrical stimulation somehow distracts the brain.
Lau said Parent supported his plan and was on hand for the trial procedure before he ramped down his own career. After the trial proved successful, the full procedure was completed on Jan. 25, 2023.
“I am off narcotics now. I’m in college. Actually, I started college while going through the surgeries because I needed something to cling on to — a little extra, to get me through it,” Dostie said.
“(I’m a) straight-A student for the most part. I’m hoping to graduate in two years from two different programs (early childhood education and social work).”
Dostie added that her new lease on life has had a ripple effect on those around her.
“My son is actually following in my steps a little bit. He’s doing better in school right now,” she said.
“I’m really proud of him, but I think it’s because he’s constantly watching me working at it. And, you know, you lead by example.”
Dostie has a remote that can control the intensity and frequency of the stimulation. She’ll have yearly checkups just to make sure everything is working well, but the batteries should last for at least a decade and replacing them is a simple day procedure.
Lau said Dostie’s experience shows that personalized care is key for pain management and he’s hopeful that for others with “this type of atypical facial pain, we can potentially try this type of treatment. Whereas, previously, we would say, ‘Sorry, we can’t help you.'”
Dostie crocheted blankets for Lau and the team that took care of her to thank them, a tradition from her grandmother that she wanted to carry on.
“She taught me how to crochet when I was six years old, so I wanted to continue the tradition and make a blanket for everybody to say thank you,” she said.
“This procedure saved my life, and now I’m living out my dreams.”
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