Are you feeling frustrated by a lack of improvement with your cervical dystonia (CD)? Do you feel lost, wondering where to turn next? Do you find yourself asking “What else can I do?” Or maybe, you are recently diagnosed, and looking for somewhere to start. 

Like many others, you might find yourself confused by the lack of information about treatment options, and the challenge of finding professionals who are even familiar with the diagnosis - let alone experts in treating it. Medications, and traditional, orthopedic-focused physical therapy treatments are usually inadequate. While many people with cervical dystonia (CD) respond well to certain pharmaceutical treatments (including botulinum toxin injections), a significant proportion are looking for more to reduce symptoms, and make activities more manageable. 

Fortunately for you, at re+active we have been working with individuals with CD for over 12 years. Along the way we have developed treatment approaches that are based on research, and a detailed understanding of the underlying neurological mechanisms. Through exploration, collaboration among our neuro-nerd therapists, and with the movement disorders team at UCLA, we have helped many people see great results! We have even established an integrated Dystonia Program, created courses and how-to guides for other clinicians, and workshops all about dystonia treatment. 

Whether you are someone trying to get started making changes on your own, or wondering what to look for in professionals who could help you with your symptoms, this blog post is for you. If you feel like you have hit a dead end with initial treatment approaches, let this be your go-to guide for navigating cervical dystonia, and starting - or re-starting - your journey to progress. 

We will cover: 

• An overview of dystonia and its diverse symptoms and causes 
• Science-y stuff: neurological mechanisms of dystonia 
• Non-pharmacological treatments and a holistic, therapeutic approach
• How we use these ideas at re+active to re-train the brain and help our patients re-gain control of their dystonia symptoms 
• How you can start making positive changes today 

As a note: we have created an entire course about treatment and assessment of dystonia tailored to physical therapists and other health professionals (https://www.reactiveeducation.com/dystonia) that you can share with your therapist. It’s a great way to teach them how to help you and others with dystonia! 

Let’s get started! 

Dystonia is an umbrella term describing a neurological condition leading to excessive and involuntary muscle contractions and postures. While the name emphasizes the movement component, cervical dystonia is associated with a wide-variety of non-motor symptoms. These are often as big - or bigger - contributors to disability and challenges with their usual activities. 

I love this particular Iceberg image from Bradnam et al 2020 to show all of the important factors in dystonia
Idiopathic, focal dystonias like cervical dystonia are the most common that we see in our practice (but not the only!). And despite their complexity, they can be great candidates for brain re-training. 

This complexity comes from the fact that while the symptoms present in your muscles, the underlying problem is in your brain. This is why, while Botox into the muscles can be a powerful treatment for many individuals, we don’t think it leads to longer-lasting changes - since it does not address the root cause of the symptoms. 

Why, you might ask, if the problem is in my brain, can all of my MRIs not show any abnormalities? 

Dystonia is a problem with brain "software"

It might help to think about dystonia the way a computer functions. If your brain were a computer, there would be a problem with the software rather than the hardware. The software is the computer program and the hardware is made up of the physical parts of the computer. In dystonia, there is often no physical damage to the nervous system, and instead it is a programming issue. The "programming" of the brain takes place through a concept called neuroplasticity. This allows the brain to form new connections and make changes.

Why this software problem occurs in cervical dystonia is not completely known. We do know that there is over-excitation in the central nervous system causing problems with integrating sensory information, and crossed wires in areas of the brain controlling movement, autonomic nervous system dysregulation (excessive fight-or-flight system activity) and that many factors - physical and otherwise, are involved. (Brakefield, 2008) 

The take-home: the cause of  cervical dystonia is multifactorial

Past injuries, specific psychosocial factors, life and job stressors, personality traits, genetics, and other environmental factors all play a role in initiating and perpetuating symptoms in dystonia. 

At re+active, we we use a pie chart framework to assess and break down these factors that may contribute to dystonia. 

Understanding the neurology behind dystonia points directly towards the ideal model of treatment. With the right tools and environment, we can harness that neuroplasticity, influence the nervous system to undo the negative changes, and reinforce the positive connections.

So let’s dive right in! We’ll start by returning to our dystonia pie chart: 

A holistic therapeutic approach focused on neuroplasticity 

An ideal treatment program should consist of assessment and treatment of each of these components: 

• Motor Control 
• Sensory 
• Autonomic Nervous System (ANS): understanding and regulating the over-excitation in the nervous system that contributes to dystonia symptoms

• Lifestyle: including sleep, routine/time management, eating routine, physical activity
• Psychosocial: 
• Many with cervical dystonia will understand the role of stress, emotions, and thought patterns in driving their symptoms. If you aren’t sure whether this applies to you, you might ask: 
  • Do my symptoms get worse when I am in a public setting or when I feel I’m being observed? Does my dystonia get worse when I am stressed or dealing with a difficult life situation? Am I engaging in unhelpful thought patterns that I know contribute to my symptoms?If so, these factors can be assessed and addressed 

• Physical Limitations: including assessing range of motion, strength, balance, and more 

Shown here (left)  is the Cervical Spine Joint Position Error (JPE) Test - done with a head laser. It might look wacky, but it is a validated method of assessing your brain’s ability to sense where your head and neck are in space - without using vision. It can also be used as a fun, externally-focused training tool! 

All of these potential factors can also be viewed as opportunities for positive brain changes. Each one of these components is a gateway to neuroplasticity. 

At re+active we believe this holistic approach is best achieved with a team of dedicated and informed neuro-therapists. This might include physical therapists, occupational therapists, speech therapists,  psychologists, yoga therapists and/or personal trainers with experience in dystonia treatment. This is the guiding principle behind our dystonia integrated treatment programs! 

(PS, we have a Free guide with treatment strategies for people with dystonia will be sure to get you started, download it here)

We understand that not everyone with CD is able to commit to an integrated treatment approach, and that’s ok! That does not mean that you cannot make progress. Let’s briefly talk about organizing these treatment components into actionable steps - that you can begin working on individually, or with a team of providers. 

Building an Effective, Individualized Treatment Approach for Cervical Dystonia: 

In order to stay on track in dystonia treatment, it helps to break down our brain re-training into three specific features: 

1. The set up: Preparing the brain 
2. The work: Training the brain 
3. Treating underlying factors: 

1) The Set-up: Preparing the Brain

It’s easy to skip past this step - but our clients with dystonia will attest that 

Components of successful brain set-up optimize your nervous system environment to allow for the changes we want to promote, and might include: 

• Aerobic exercise and enjoyable physical activity - which are known to stimulate neuroplasticity in the brain 
• Autonomic nervous system regulation strategies: Quieting the nervous system - breathing and mindfulness exercises, meditation, rocking, swaying, and using weighting are all fantastic options that we use with clients 
• Positive expectation for recovery 
• Imagining normal movements (with joy!):  mental imagery is so powerful!

2) Next up: The Work - Training the brain 

First:  Inhibit abnormal movements:

Some examples that help to promote more automatic normal movements. 

• Use sensory tricks to inhibit the abnormal movements.  
• Change in position or environment to inhibit abnormal movement (example below--using quadruped position with a laser head lamp)  

• Change of sensory input.  In PT for CD we have evidence for: vibration, proprioception, EMG/biofeedback, sensory stimulation, and proprioception as specific interventions to improve dystonia symptoms. 

• Dual task 
• External focus of attention (example below is a ball toss for visual and head movement)  

Everyone will respond differently to methods to inhibit abnormal movements--so this is where we get to be very creative! 

Second: slowly re-train normal movements - using a variety of the strategies noted above

• Restoring automatic and fluid movements: incorporating these sensory adaptations, posture changes, and neuroplasticity-focused training to access automatic movement pathways in the brain. 

3) Also Important - Treat Underlying Factors:

These are important to consider when working on your own, or with a physical therapist. 

• Biomechanics 
• Strength 
• Flexibility
• Nerve mobility 
• Balance 

Finally:  PRACTICE, PRACTICE, PRACTICE! The true work of training the brain is repetition and gradual and successful progression of the sensory and motor activities daily.  It requires a strong commitment to a home program and frequent feedback for positive results. 

This will take time, patience, and self-care - understanding that the good days and bad days are normal variations. The process of recovery is rarely a straight line to success. 

(Another reason that a good therapist or care team can be helpful - to guide you and keep you on track through the ups-and-downs). 

Whew - that was a lot and we made it through! Hopefully, this information has helped provide some clarity to treatment options and healthcare professionals available to assist you on your journey of dystonia recovery. With all that information, I have a couple of parting questions for you that we have to know: 

Are you looking for specific strategies that you can use today to help control your symptoms?    Download our free guide with 3 treatment strategies that are sure to give you some relief. 

You can also check out our Dystonia Program Page to see more videos on dystonia including our Youtube playlist, and examples of successful outcomes in cervical dystonia.

And finally, are you interested in getting started with us at re+active? If so, visit the Dystonia Program Page or Fill out our integrated treatment program application and get started today! 

Dr. Lincoln Beal, PT, DPT 

Physical Therapist 

Dystonia Program Director 

re+active Therapy and Wellness 

References: 

1. Breakefield, X., Blood, A., Li, Y. et al. The pathophysiological basis of dystonias. Nat Rev Neurosci 9, 222–234 (2008). https://doi.org/10.1038/nrn2337
2. Bradnam LV, Meiring RM, Boyce M, McCambridge A. Neurorehabilitation in dystonia: a holistic perspective. J Neural Transm (Vienna). 2021 Apr;128(4):549-558. doi:10.1007/s00702-020-02265-0. 
3. Byl NN, Archer ES, McKenzie A. Focal hand dystonia: effectiveness of a home program of fitness and learning-based sensorimotor and memory training. J Hand Ther. 2009;22(2):183-198. doi:10.1016/j.jht.2008.12.003
4. De Pauw, J., Van der Velden, K., Meirte, J., Daele, U. Van, Truijen, S., De Hertogh, W., Mercelis, R. (2014). The effectiveness of physiotherapy for cervical dystonia: A systematic literature review. Journal of Neurology, 261(1), 1857–1865. http://doi.org/10.1007/s00415-013-7220-8
5. Barr, C., Barnard, R., Edwards, L., Lennon, S., & Bradnam, L. (2017). Impairments of balance, stepping reactions and gait in people with cervical dystonia. Gait and Posture, 55, 55–61. http://doi.org/10.1016/j.gaitpost.2017.04.004