after years of painful symptoms and fruitless referrals, this manitoba woman finally got the right diagnosis
sometimes misdiagnosed as stiff neck, arthritis or wry neck, cervical dystonia (cd) is a painful neurological condition. but with the correct diagnosis and support, patients can learn to live with cd.
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vanessa david, pictured here with her family, brushed her cd symptoms off for years before experiencing a series of fruitless referrals and misdiagnoses. supplied
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this story was created by content works, postmedia’s commercial content division, on behalf of a client.
when vanessa david, a 39-year-old school vice-principal from steinbach, manitoba, first began noticing unusual symptoms nearly 20 years ago, she didn’t think much of it. “i had chronic back pain that was more intense than anybody else would have been feeling at age 21,” she says. “i also had what i thought were tension headaches for a decade, starting in my late 20s.” it took her symptoms worsening quite drastically and years of searching before david was finally diagnosed with cervical dystonia (cd).
“a dystonia is a neurological condition where you get abnormal posture or position of your muscles due to muscle spasms,” says dr. kerrie schoffer, a neurologist, researcher and assistant professor at dalhousie university. “the most common type of dystonia in adults is cd, which affects the neck. patients experience an involuntary spasm that leads to abnormal neck postures or turning of the neck, sometimes with an associated jerky tremor.”
dr. schoffer notes that the movement disorder can be painful and that the onset of cd symptoms is typically gradual. symptoms may include the neck twisting or tilting to the side, the head tipping forward or back, the shoulder elevating toward the ear or the neck shifting away from the midline of the body.
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“the symptoms typically continue to progress and become more bothersome over time,” says dr. schoffer. “and because a lot of health-care professionals aren’t familiar with this condition, the diagnosis can be quite delayed.”
david is certainly proof of this. she brushed her symptoms off for years before experiencing a series of fruitless referrals and misdiagnoses. “i was diagnosed with scoliosis at one point, and my doctor and i dug deep into arthritis at another point,” she says. “i spent two years seeing a rheumatologist who kept saying, ‘there’s something going on here, but i’m not sure what.’ it was a long journey.”
it took david landing in the er with an intense headache — and a failed treatment plan for migraines — before her doctor referred her to a movement disorder neurologist. within an hour, she had an answer to her nearly two decades of suffering.
“because a lot of health-care professionals aren’t familiar with this condition, the diagnosis can be quite delayed,” says neurologist dr. kerrie schoffer. supplied
it’s estimated that 50,000 patients in canada suffer from dystonia, with 60 percent (30,000) suffering from cd. cd is often confused with other conditions and can sometimes be misdiagnosed as stiff neck, arthritis or wry neck.
to complicate matters, there’s no test to confirm a cd diagnosis, and in most cases assorted laboratory tests are normal. despite these challenges, diagnosis is often straightforward once patients are finally seen by a neurologist who’s familiar with the condition.
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“once patients get into our clinic, a physical exam and a history is usually all i need to make the diagnosis,” says dr. schoffer.
living with cd has had a significant impact on david’s daily life and exercise routines, and it has also impacted her employment — although, fortunately, she’s still able to work, with the right workplace accommodations in place. “i initially had to take some days off for the headaches, but since i’ve learned how to deal with them, i can basically work full-time,” she says. “i’ve also started teaching my colleagues a bit about dystonia, which has been vulnerable for me.”
early detection and diagnosis of cd are important as they facilitate early intervention. one study of 50 patients with cd showed that 64 percent had a psychiatric disorder compared to 28 percent in a control population, with 32 percent having depression (versus 14 percent of the control group) and 42 percent having anxiety (versus 8 percent of the control group).
other studies have also contributed to a “large and growing body of evidence of the coexistence of depression and anxiety with isolated focal dystonia.” it appears that cd patients have a high prevalence of non-movement symptoms like anxiety and depression. “cd is a neurological brain condition, so there’s an association there,” says dr. schoffer. “we know that a lot of brain conditions have associations with psychiatric conditions.”
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cd is a very real condition that’s oftentimes marked by debilitating symptoms. “one of the biggest things about cd is that it’s so front facing,” says dr. schoffer. “it’s your face, your neck — it’s one of the first things that people notice about you, even online. people can be really self-conscious about it, and they might start to limit their social activities or social interactions, which can lead to the higher rates of depression and anxiety.”
fortunately, support is available for patients and caregivers. while there’s no cure for dystonia, some medicines and therapies are available, including oral and injectable medications, physical therapy and deep brain stimulation surgery. dr. schoffer notes that an interdisciplinary approach is often helpful — one that includes neurology, psychiatry, physical therapy, occupational therapy, speech therapy and cognitive behavioural psychotherapy approaches.
“i think the main thing is to realize that you’re not alone,” she adds. “one of the difficult things about cd is that it’s very isolating. having associations like the dystonia medical research foundation is really important. they provide support groups, literature and information to people.”
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david encourages people experiencing the symptoms of cd to advocate for themselves and challenges everyone — from caregivers to medical professionals — to enhance their understanding of the condition. “until you have the right diagnosis, you can’t make any strides forward,” she says. “so push for the right diagnosis. it something doesn’t seem right, listen to that little voice in your head.”
to learn more, talk to your doctor and visit dystoniacanada.org.
this story was created by content works, healthing.ca’s commercial content division, on behalf of abbvie corporation.
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