get healthing in your inbox with the morning checkup and weekender newsletter!

rare diseases

diagnosed with cervical dystonia: managing your care team, support and treatment

cervical dystonia is not widely known, so primary care professionals usually are not familiar with the condition, and symptoms like head tremors, headaches and neck pain can be attributed to other causes.

by karen hawthorne

published dec 20, 2024

7 minute read

join the conversation

7 minute read

join the conversation

one of the most common problems of cervical dystonia is getting to the diagnosis, dr. davide martino says, which begins with a referral to a neurologist at a movement disorders clinic. getty images

for many, getting a diagnosis comes as a relief with the understanding of what’s going on with their body and what can be done to manage symptoms. this is typically what happens when people get into see a movement disorder specialist for cervical dystonia, a rare neurological disorder that affects the neck and shoulder muscles where involuntary contractions turn the head to the side or force the head back or forward, according to dystonia medical research foundation canada. the head often remains in the awkward and uncomfortable position that makes work and other daily living activities a huge challenge. cervical dystonia is not widely known, so primary care professionals usually are not familiar with the condition, and symptoms like head tremors, headaches and neck pain can be attributed to other causes. also, there is often a long wait to receive the diagnosis from a neurologist. cervical dystonia is one type of dystonia movement disorder that causes excessive, involuntary muscle contractions. these contractions lead to sometimes painful and abnormal muscle movements, spasms and body postures that people can’t control. the movements are patterned and repetitive.

about one in three people with cervical dystonia will have symptoms that spread to other areas of the body, such as the arms, face or jaw. and in some people, signs and symptoms disappear without treatment but recurrence is common. there is no cure, but several interventions for treatment, including non-drug therapies for stress relief and relaxation that supplement drugs or surgery.

here’s how you can manage a diagnosis of cervical dystonia.

connect with your care team

neurologist dr. davide martino, director of the movement disorders program at the university of calgary and a leading clinician researcher in dystonia, understands that cervical dystonia can be an uphill struggle for people beyond their control.

“typically, people with cervical dystonia start off by having pain and some jerky movements of their head, which they are unable to control. and this is something that creeps up and builds up over time,” he says, adding the disorder can be linked to stroke, head injury or parkinson’s disease. “there are also some patients who report that they’ve had a trauma or something happen and pretty quickly they’ve developed this movement disorder, but in most cases it’s actually quite gradual.”

his research program investigates biomarkers of complex movement disorders like dystonia, parkinson’s disease and tourette syndrome and how they can be applied to evaluation and treatment.

one of the most common problems of cervical dystonia is getting to the diagnosis, he says, which begins with a referral to a neurologist at a movement disorders clinic. “once you have the diagnosis, you’re about 40 to 50 per cent ahead in your journey.” martino recommends primary care professionals, patients and their families connect with the canadian movement disorder society for resources and listings of clinics by province. finding a neurologist with experience in cervical dystonia is the best route to a treatment plan and routine visits. he also suggests reaching out to dystonia medical research foundation canada for further resources and support.

the mainstay of treatment is injecting botulinum toxin, commonly known as botox, to block the nerve that causes muscle contractions. these injections alleviate the contractions, improve posture and relieve pain in that region. the effects wear off and injections need to be repeated every three months.

there are muscle relaxants and other oral medications that block the nerve signals that can be used but are not as effective, he says, adding they also come with side effects. however, about one-third of patients do not have a satisfactory result with botox. in these cases, neuromodulation surgery like deep brain stimulation can be an option. a battery-powered stimulator, which is essentially a brain pacemaker, is implanted in the body and delivers electrical stimulation to the areas of the brain responsible for causing dystonia symptoms. the stimulator is implanted in the chest and extension wires connect it to electrodes in the brain.

martino says the efficacy of botox injections has created the “illusion that we have found a solution to dystonia which is really not the case. it’s not a cure and it’s something that needs to be repeated about four times a year, so it does have a significant cost to healthcare systems because we see patients four times a year, which is far more than we would see a patient with parkinson’s disease or other movement disorders.”

the other issue is cost to patients. botox is not covered by provincial funding, putting a financial strain on patients and their families.

understand the non-motor symptoms

cervical dystonia is even more debilitating when you consider how it affects mental health. “once it develops, people become increasingly aware and self-conscious about it because it is a very obvious condition. the result of this is they become increasingly frustrated by the involuntary muscle contractions and involuntary movement,” martino explains. the emotional strain can lead to social anxiety or social avoidance, and he sees depression in many cases.

“people are also influenced by the neck pain and sometimes the headache associated with it that clearly has an impact on their quality of life.”

the current model of care doesn’t have the capacity for neurologists to address mood issues, anxiety or sleep disruption, he says, but these health issues need to be treated. there is strong evidence suggesting that the impact on quality of life of non-motor features is even greater than that of motor problems of dystonia.

neurorehabilitation scientists at the irccs centro neurolesi “bonino di pulejo” of messina, italy looked at the literature on the impact of non-motor symptoms of cervical dystonia on quality of life for a report published in the journal of clinical medicine in july 2023. they found that the most frequently reported emotional problems are related to the stigma linked to the disease and to feelings of insecurity around new people, problems with friends and family, fears regarding the disease and feelings of sadness.

as well, a significant percentage of patients report difficulties in recreational activities, meeting job demands, attending public places, discomfort in public, and having concerns with people’s reaction to illness and isolation. they also point out that the stigma is associated with the feeling of body deformation that can lead to the onset of mood alterations, and quality of life is also impacted by fatigue and excessive daytime sleepiness.

as the authors note, “often, the focus is on the motor component of the disorder, leaving out the set of non-motor characteristics that are equally part of the pathophysiological picture of dystonia. the non-motor symptoms need a lot of attention from a clinical point of view, as they strongly influence the quality of life and play a fundamental role in the perception of the patient, both of himself and of his life in general.”

martino is testing brief questionnaires which are self-administered by patients to monitor quality of life, and he’s collaborating on a study that uses smartphone apps to collect symptoms and quality of life impacts in between botox injections. he sees technology as the pathway to upgrade and improve the efficiency of the model of care for movement disorders including cervical dystonia.

find support resources

reaching out to professional organizations for help, like dystonia medical research foundation canada and the canadian movement disorder society, is key to getting informed about the disorder and feeling less isolated. there are support groups and suggestions for other supports like counselling and alternative pain management therapies.

while physiotherapy is one option, martino recommends talking with your neurologist for consistent advice and messaging because some physiotherapy may aggravate the problem. reach out to your movement disorders clinic and these professional organizations for the best information and resources.

“these organizations are crucial to create a bridge of communication and education between patients, the general public and healthcare professionals who work in hospitals and academic institutions with evidence-based treatments or who are doing research on new treatments to build new evidence.”

as with most health concerns, having a family network or life partner will also support the patient’s journey toward receiving good care and advocating for other issues like the non-motor aspects of cervical dystonia. reach out to family and friends and stay connected.

commit to your treatment

few cases of cervical dystonia go into remission and the disorder is life-long, which means ongoing treatment and monitoring is critical. people with cervical dystonia emphasize the reliance on botox injections to protect their mobility and being invested in 2022年世界杯名单猜测 habits for self-care for both mental and physical health.

martino says there is hope for improved treatments as research continues. his lab team is pursuing non-invasive forms of neuromodulation such as intensity focused ultrasound.

as technology advances, more interventions will become available to patients. “we’ve also recently tested a vibration-based tactile stimulation on neck muscles, which seems to help a proportion of patients with cervical dystonia,” he says. the technology holds promise for engineering and customization as a wearable device to provide stimulation.

for more information on cervical dystonia, connect with dystonia medical research foundation canada.

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

diagnosed with cervical dystonia: managing your care team, support and treatment

cervical dystonia is not widely known, so primary care professionals usually are not familiar with the condition, and symptoms like head tremors, headaches and neck pain can be attributed to other causes.

what it feels like: finding the silver lining in the uncertainties and spasms of cervical dystonia