Have you been frustrated by a lack of improvement in your patients with cervical dystonia (CD)? (Or do you have dystonia and want your PT to understand it better--send them this blog post!)
Do you find yourself saying, “What else can I do?”
You are not alone.
I don’t think there is anyone that treats dystonia frequently that doesn’t sometimes throw his or her hands up in the air.
Dystonia is a tough and confusing disease that is historically non-responsive to a lot of physical therapy treatments. But - if you’re like me - one of those crazy neuro therapists (or even an ortho therapist with a little crazy running through your veins), you’re driven to understand and help the person with the rare, neurologic disorder regain their life.
So, that is what I are going to map out for you today:
How do you have a systematic yet individualized approach to treating cervical dystonia (when it is so varied!)?
How do you approach treatment so that you are really getting at some of the underlying causes?
And finally—how do you team with your patient to make long lasting changes?
I’ve got some answers for you!
PLEASE NOTE: This information is only a small segment of our Beyond the Basics of Dystonia Evaluation and Treatment mini-course. If you want to take your neuro skills to the next level, click here to learn more about this powerful mini-course.
We’ve also gathered all the basics of the assessment and treatment of Cervical Dystonia into two helpful 1-page PDF Cheat Sheets that you can download for free. When you get your cheat sheets, you’ll also get 3 videos of treatment techniques we use on a regular basis at re+active!
Alright, time to get started. Today we’re going to cover:
The importance of a holistic and multi-disciplinary approach.
The tiny bit of evidence that exists in PT treatment of dystonia.
How to incorporate learning based sensorimotor training into treatment for people with CD
How to apply a systematic approach to training in CD.
Who Treats Cervical Dystonia?
A holistic and team-based approach is essential for success in the treatment of CD.
First, it is super important to note that treatment in dystonia is not done in a PT bubble—it is necessary to have a holistic team approach!
I am speaking from experience here—if you go at it alone, or just address the physical side—your chances of success are a lot lower.
The figure above shows some of the necessary team players and areas that are needed for success. We collaborate most frequently with the neurologists who are doing injections in order to time our therapies at peak dose. Exploring everyday healthy behaviors that help decrease the over excitation in the nervous system such as mindfulness, getting 8 hours of sleep, eating healthy well-rounded meals at least 3x/day and having 3-5x/week of regular fitness activities are also essential components of the approach. We would have to write a book to comment on all of the pieces of the puzzle listed here, but I think the message is clear—dystonia requires a mind-body-spirit approach.
Cervical Dystonia - What’s the Evidence for Physical Therapy?
As the evidenced based clinicians that we all are—we want to know that there is at least some evidence. And there is—it’s just very limited—mostly case studies, small studies, non-randomized studies. A recent systematic review (De Pauw et al 2014) found 16 studies of physical therapy with the majority having low methodological quality i including small sample sizes, lack of randomization or blinding and variety of treatment techniques and outcome measures. Below is a summary in list format of some of the different types of training/techniques that have been published in CD treatment.
I highly recommend that you delve into the literature (we have a great reference list at the end of the blog) and take a peek at some of these (even though they are small) studies, because I think they give a great background and framework for the approach in CD. In our experience, there are pieces of all of these interventions that have been helpful with our clients, but each person needs an individualized approach.
Building an Effective Treatment Approach for Cervical Dystonia
As we dive into the treatment of CD, I will preface it by saying—we have based the framework for our approach off of a key piece of literature in the dystonia world—but it is for focal dystonia. The principles presented in the learning based sensorimotor training (LBSMT) (Byl, Archer, McKenzie, 2008) for focal dystonia have been invaluable in shaping our treatment approach.
We have broken down LBSMT into three distinct features in order to have a systematic method of treatment. They include:
The set up: Preparing the brain
The work: Training the brain
Treating underlying factors
Let’s talk a little bit about each (again, we could write a book, but we will get you the basics so you can start right away with your patients today)
The Set Up: Preparing the brain
This is the most important step!
(A little confession here—I used to skip this step, not truly understanding the significance—don’t be like me!).
Why is this step important?
We understand that the underlying pathophysiology in sensory dystonia includes excessive excitability (decreased inhibition) in the nervous system and neuroplasticity gone awry. So, if you are going to make change, you need to address the underlying problem, right?
How do we do this?
Some key components of successful brain set up include:
Enhanced expectations (Statements like---” people like you improve with treatment…..”)
Providing Autonomy (choice for their day and therapy session for example)
Quieting the nervous system (rocking, swaddling, parasympathetic toning activities--one of my favorites is a breathing meditation--an example here led by our amazing yoga therapist: https://www.youtube.com/watch?v=4GxVIUzdqy4&t=34s)
Imagine normal movements (with joy!): mental imagery is so powerful! We like to capture video of a movement where the client is using a sensory trick so that they can watch it and imagine all of their daily activities with that level of control.
The Work: Train the brain
Once you have the proper substrate for making brain change, you are ready for some brain changing activities.
Now we get to really get into the bread and butter of learning based sensorimotor retraining.
The driving force is to stop or inhibit abnormal movements and then re-train the normal movements. I’ve listed some ideas below:
The video above shows a person with cervical dystonia employing a common sensory trick.
First: Inhibit abnormal movements:
Use sensory tricks to inhibit the abnormal movements. In the video above, the person uses a common sensory trick to inhibit movement. Sometimes it takes exploring many options (and it is good to have a variety of options), so that the person can experience normal alignment.
Change in position or environment to inhibit abnormal movement--hang upside down, place the head between the legs, lie on the side, are all good places to start.
Change of sensory input. Use TENS, kinesiotape or vibration on an overactive muscle to change the sensory input (Karnath et al 2000, Capecci et al 2014).
Everyone will respond differently to methods to inhibit abnormal movements--so this is where you get to be very creative! My favorite story is of a woman who had a runner's dystonia and we found that a particular stuffed animal wrapped around her leg stopped her abnormal movement--and she could keep running (so important to a dedicated runner!)
Second: Slowly re-train normal movements:
Start in a non-target task and progress to the target task
For example, in a patient with CD who has it most severe with walking, we might start first in supine where they have full control of their head movement, work on head and body movement side to side, arm movement independently and dual task in this position before moving to sidelying, reclined sitting, sitting, sitting on an uneven surface, standing quietly and then finally progress to walking with head control.
Other ideas including use of Alter G or a pool as a means to change the task or using a mirror or video training of someone else doing the task (a great way to use imagery and do mental practice).
Improve sensory and motor discrimination
If we consider that the problem with the movement control might stem from a "smudging" of the sensory cortex, it is important to improve the ability to identify and localize sensory input and to perform discrete motor tasks. In the case of CD, this might mean improving sensory identification in the neck and torso (i.e., "identify where I am touching you now"); improving discrete motor control (i.e. head still and torso movement) and improving postural righting responses (i.e. tilt trunk on ball and right head to gravity).
External focus of attention (provide cues to focus externally rather than on the self). For example, we use a simple cue of turning to look at the ball (rather than “turn your head”) and a person has full control of his head movement.
Finally: PRACTICE, PRACTICE, PRACTICE 10-100X per day.
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.
**EVIDENCE PEARL** - We have become strong proponents and users of the OPTIMAL theory of motor learning (Wolf and Lewthwaite, 2016) and strongly recommend using these principles in CD (and all of your neuro treatments). This article (here) is thick and full of evidence—but the key principles of 1) Autonomy, 2) enhanced expectations and 3) external focus of attention cannot be understated. Highly recommended reading!
Treat underlying factors
We state this piece of the treatment last, but sometimes this is the first item addressed.
These are the types of interventions that you are probably already doing with your patients and are important for the overall success of the program:
Biomechanics—analyze and treat the posture and movement where the dystonia is the worse (gait, sitting, standing, etc).
Strength—investigate strength imbalances that may have contributed the CD (and it is often far away from the neck—think pelvis, hips, lumbar spine)
Flexibility--is the lack of extension or rotation in thoracic spine contributing to the issue? How about hip flexor length contributing to pelvis position and influencing the head/neck position?
Nerve mobility—check and treat common upper limb tension patterns. Thoracic spine mobility is key!
Balance—improve proprioception, postural righting responses, and anticipatory postural control. I know that you amazing neuro therapists are pros at this!
Whew—we made it!
We have found success with this systematic approach at re+active and know that you will, too.
As a summary—here is your best bet for success in CD :
A multi-disciplinary an holistic approach
Apply learning based sensorimotor re-training including
Brain set up
Treat underlying factors.
Make sure you grab the free Cervical Dystonia Evaluation & Treatment Cheat Sheets we've created for you! When you request them via the link below, you'll also get 3 awesome treatment technique videos delivered to your inbox.
These should give you a solid upgrade to your cervical dystonia toolbox!
Now, I know that we could not go into vast detail with every step in a blog post, so I invite you to join us for our mini course: Beyond the Basics — Dystonia Evaluation & Treatment. We cover cervical dystonia, and also dive into all types of dystonia and how to best approach them in the clinic.
Click here to check it out - I'd love to see some fellow crazy neuro therapists, like you, inside!
Cheers to your #iloveneuro spirit,
Dr. Julie Hershberg, PT, DPT, NCS
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
Byl, N. N., Archer, E. S., & McKenzie, A. (2009). Focal Hand Dystonia: Effectiveness of a Home Program of Fitness and Learning-based Sensorimotor and Memory Training. Journal of Hand Therapy, 22(2), 183–198. http://doi.org/10.1016/j.jht.2008.12.003
Crowner BE 2007 Cervical dystonia: Disease profile and clinical management. Physical Therapy 87: 1511 1526.
Capecci, M., Serpicelli, C., Fiorentini, L., Censi, G., Ferretti, M., Orni, C., Ceravolo, M. G. (2014). Postural rehabilitation and kinesio taping for axial postural disorders in Parkinson’s disease. Archives of Physical Medicine and Rehabilitation, 95(6), 1067–1075 http://doi.org/10.1016/j.apmr.2014.01.020
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
Jahanbazi, A., Chitsaz, A., & Asgari, K. (2013). Effects of EMG Biofeedback on Pain and Quality of Life in Cervical Dystonia. Journal of Neurological Disorders, 2(1), 1–6. http://doi.org/10.4172/2329-6895.1000144
Karnath, H. O., Konczak, J., & Dichgans, J. (2000). Effect of prolonged neck muscle vibration on lateral head tilt in severe spasmodic torticollis. Journal of Neurology, Neurosurgery, and Psychiatry, 69(5), 658–60. http://doi.org/10.1136/jnnp.69.5.658
Van den Dool, J., Visser, B., Koelman, J. H. T. M., Engelbert, R. H. H., & Tijssen, M. a J. (2013). Cervical dystonia: effectiveness of a standardized physical therapy program; study design and protocol of a single blind randomized controlled trial. BMC Neurology, 13(1), 85. http://doi.org/10.1186/1471-2377-13-85
Wulf, G., & Lewthwaite, R. (2016). Optimizing Performance through Intrinsic Motivation and Attention for Learning: The OPTIMAL theory of motor learning. Psychonomic Bulletin & Review, 22(6), 1–35. http://doi.org/10.3758/s13423-015-0999-9
Zetterberg, L., Halvorsen, K., Färnstrand, C., Aquilonius, S.-M., & Lindmark, B. (2008). Physiotherapy in cervical dystonia: six experimental single-case studies. Physiotherapy Theory and Practice, 24(786945523), 275–290. http://doi.org/10.1080/09593980701884816