By: Malika Richards, Student Physiotherapist, Queen’s University, Ontario, Canada
Co-Author: Matthew Craig, Principal Physiotherapist, Director bounceREHAB
Cervical dystonia is a rare neurological disorder that is also known as spasmodic torticollis. It is a condition that causes the neck muscles to contract involuntarily. The neck muscles involved are the sternocleidomastoid, splenius capitis and splenius cervicis, trapezius, and levator scapulae muscles. The contractions of these muscles can be various intensities based on the degree of muscle tension and position of the head. These muscles can be contracted permanently or intermittently causing an abnormal position of the head. This causes significant disability as the position of the head is altered during everyday activities and can be quite painful. Dystonia can be localised in the neck region, or it may spread to other muscles in the body and become multifocal dystonia.
Etiology
Cervical dystonia can occur suddenly or slowly over time. The onset may be due to:
Local trauma
Occupations requiring repetitive movements or a predominant head position
Psychopathological disorders (depression or severe stress)
Social or domestic changes (separation or bereavement)
Neck and/or scapular pain
Dystonic tremor
Prevalence
The prevalence of cervical dystonia is 3-9% per 100,000 people. It affects more women than men, and has the greatest incidence in white females between 45-50 years of age. The majority of patients do not have it spread to other body parts resulting in multifocal dystonia.
Symptoms
Head jerking and neck spasms
Neck pain
Photosensitivity or eye discomfort
Abnormal vestibular functioning (dizziness)
Altered perception of body orientation in space
Multifocal: involuntary muscle contractions in other areas of the body - repetitive or twisting movements
Treatments
Cervical dystonia is a relatively rare disease and thus there are delays in diagnosis and treatment due to the lack of exposure with healthcare professionals. The main treatments for cervical dystonia are botulinum toxin (botox) injections, and oral medications. Medications for Parkinson's disorder, Levodopa and Carbodopa are quite effective, as cervical dystonia is a movement disorder. Sensory tricks can also be used to attenuate or eliminate abnormal movements. The patient often maintains the head by pressing the hand onto the cheek, chin, or neck or by placing the fingers on the temple. If less invasive options do not help, the physician may recommend surgeries such as deep brain stimulation and cutting the nerves.
Physiotherapy Management
Cervical dystonia can be managed with physiotherapy. Goals of therapy sessions are to:
Maintain range of motion in the cervical spine with gentle manual manipulations
Stretch the neck muscles involved
Strengthen the antagonist muscles
Relieve muscle tension with gentle manual traction
Correct compensatory spinal curves that may be observed in the thoracic or lumbar spine
Help patient perceive the natural and balanced position of the head without looking in a mirror
Current Research
In a literature review by De Pauw (2014), it was concluded that physiotherapy may be effective for symptoms of cervical dystonia. This review examined seven studies with physiotherapy treatments including muscular elongation, postural exercises, electrotherapy, and EMG biofeedback training. It was found that improvements in head position, pain, range of motion, and quality of life were reported.
In a more recent literature review by Loudovici-Krug (2022), it was found that physiotherapy as an adjective treatment to botox injections is significant in improving the symptoms of cervical dystonia in terms of pain, function, and quality of life. This review examined six randomised controlled trials and found that physiotherapy along with active home exercise programs are beneficial. The review concluded that regular therapy sessions are useful, and long-term therapy is appropriate for this chronic disorder.
Lived Experience - Patient M.
“I was first diagnosed in 2006 or 2008 with Cervical Dystonia. My symptoms were feelings of strangulation where I was choking for a breath. I initially used to 'turn around to look to fight someone off me', but there was no one there! That's when I realised it was the muscles in my throat getting cramps and choking me.
My head also started to jerk very quickly, in quick succession to my right shoulder. My chin would be pulled in close to my shoulder at the same time. I would get a pulling feeling down the right side of my neck. I had a little electric current feeling going down the back of my neck at the same time. Quick and sharp!
When I was younger though, (19 yrs old approx, 1987) I had an accident with my neck. One morning I woke up and my head was stuck on my right shoulder. I couldn't get it to move, it was extremely painful and I also couldn't move my right arm. I had a job at the time that required me to lift heavy 23kg bags of mail, maybe 100 - 150 times a day. I believe now, lifting these bags caused my neck problem back then.”
I began having migraines occasionally in the mid 90's, then much more ferociously in the early 2000's where it was like someone hitting me round the head with a metal pipe. Current research shows that migraines are a precursor to Dystonia."
Multifocal Dystonia - Patient M.
“In 2021, I was diagnosed with multifocal dystonia. I started to have problems with my right hand and foot and hugely with my balance.
My right hand closed into a fist and didn't open for ten months. This was after I'd had trouble using my right arm for almost a year before that. Physios thought I had frozen shoulder or bursitis. I had no strength in my hand or arm and my hand would get stuck in positions prior to clenching.
My Neurologist realised that the CD had spread across to my right shoulder and down my arm. That same awful pulling feeling that was in my neck was now going down my arm! I began having trouble with balance, my right foot especially.
As Dystonia and Parkinsons are both neurological movement disorders, they are treated the same way and with the same medications. So at this stage I was put onto Kinson (levodopa & carbidopa), a medication used to treat Parkinsons. I was also put on Baclofen, a skeletal muscle relaxant. Within 7 to 9 days one or both medications, fully opened my right hand.
I also receive botox injections, without botox I couldn’t cope. I get injections in my head, my down neck, across my right shoulder, and down the right side of my back every 10 weeks. I have been getting injections since 2006 or 2008 - I think now I’m Dysport as after a number of years the botox becomes ineffective and you have to switch.
The neurologist wants to start putting the botox injections into the transverse abdominis - these muscles have recently begun twisting and spasming with the multifocal dystonia."
Patient M. & Physiotherapy
“I was told the best thing I could do for myself in terms of movement, was to keep moving. I started to see a physio and do pilates and hydrotherapy exercises.
When I first started here with Matt at bounceREHAB in May this year, I had trouble, and was unable to turn my head and raise my left arm at all for two weeks. After an hour session I could move my arm slowly and carefully turn my head. That was incredible!
Physiotherapy has been a lifesaver to me, it really helps my symptoms.”
More Information & Support Groups
References
Bleton, J.P. (2016). Spasmodic torticollis: A physiotherapy handbook (2nd ed.). Éditions Frison-Roche.
De Pauw, J., Van der Velden, K., Meirte, J., Van Daele, U., Truijen, S., Cras, P., Mercelis, R., & De Hertogh, W. (2014). The effectiveness of physiotherapy for cervical dystonia: a systematic literature review. Journal of neurology, 261(10), 1857–1865. https://doi.org/10.1007/s00415-013-7220-8
Loudovici-Krug, D., Derlien, S., Best, N., & Günther, A. (2022). Physiotherapy for Cervical Dystonia: A Systematic Review of Randomised Controlled Trials. Toxins, 14(11), 784. https://doi.org/10.3390/toxins14110784
Patel, N., Jankovic, J., & Hallett, M. (2014). Sensory aspects of movement disorders. The Lancet Neurology, 13(1), 100-112. https://doi.org/10.1016/S1474-4422(13)70213-8
Supnet, M. L., Acuna, P., Carr, S. J., Kristoper de Guzman, J., Al Qahtani, X., Multhaupt-Buell, T., Francoeur, T., Aldykiewicz, G. E., Alluri, P. R., Campion, L., Paul, L., Ozelius, L., Penney, E. B., Stephen, C. D., Dy-Hollins, M., & Sharma, N. (2020). Isolated cervical dystonia: management and barriers to care. Frontiers in Neurology, 11, 591418. https://doi.org/10.3389/fneur.2020.591418