Cervical dystonia and spasmodic torticollis treatment

Ross Hauser, MD

Cervical dystonia and spasmodic torticollis treatment

Your journey started one day when you went to the doctor because you had painful, involuntary muscle spasms in the neck. Worse, and more concerning to you, is that your head started rotating and tilting to one side as these spasms got worse and it became difficult to get your head back in line.

Your doctor looked at you, noticed that your head is tilted, and feels your neck area for tightness and spasms. When the doctor asked you about how often do you get these painful muscle spasms and whether they were sharp pains mostly or dull pains mostly, you may have responded that the sharp pain and the dull pain comes and goes. Your pain sometimes starts suddenly, sometimes it goes away, sometimes the pain stays for a while and becomes continuous. When they become more frequent, that is when your head tilts most and you get a feeling of near incapacitating tightness in your head, neck, shoulder, and upper back.

At this point, your medical journey began to accelerate. Your doctor may have made a recommendation that your issue is best served by a physical and occupational therapist who specializes in neurological disorders. Possibly this is the first time you heard you had a neurological disorder and this may have frightened you very much.

Cervical dystonia secondary to cervical spine instability and osteoarthritis

In this article, you will come across the word idiopathic, the meaning of “unknown origin.” That is how your diagnosis may have been described, idiopathic cervical dystonia. What we will present here is one possible explanation for your problem: Cervical dystonia is being caused by cervical spine instability brought on by weakened or damaged cervical ligaments. This damage could be from a post-traumatic injury such as whiplash or the degenerative wear and tear of a lifetime. These damaged ligaments, which serve to hold the bones of the neck in place, no longer perform this function allowing the vertebrae to wander around compressing and causing compression of nerve roots and neurological-degenerative-like symptoms.

For many people, this connection can be missed. Your doctor tells you that he/she suspects Cervical dystonia or they may have called it Spastic Torticollis or Cervical Torticollis. They tell you it is not curable, but it is treatable. Your doctor may suggest a specialist who can prescribe and recommend various muscle relaxants. You probably received the first of your muscle relaxant prescriptions at this consultation. Later in this article, we will present alternatives to this diagnosis and prognosis.

Then your story may have taken a turn like this:

After I starting receiving treatments, specifically botox injections, I started to feel better. I was advised that if my condition worsened, we could continue with the botox. My condition worsened. At this point, I was being tested for everything including looking for a brain tumor. When nothing came back, my doctors began to explore that my problems were phycological. I tried to explain to the doctors that my head tremors make me very self-conscious, which is why I have anxiety attacks in public places. I hear them talking that they think this is “all in my head.” All the treatment I am getting at this point is Klonopin for panic disorders and anxiety.

-or-

My journey has been going on your years. When I first developed neck pain and spasms I went to my regular GP and I was prescribed graduating doses and frequency of anti-inflammatories and muscle relaxants. As my symptoms worsened I was sent to physical therapy. My neck remained stiff well after 20 sessions over a few months. The physical therapy was deemed “unsuccessful.”

On my own, I went to a chiropractor. I did this for about 6 months about twice a week. The chiropractor was able to get my neck aligned, alleviate some symptoms, but the pain and spasms returned. 

I returned to my GP and I was referred to a pain management specialist. I had cortisone into the cervical facet joints. When this did not help I was referred to a neurologist and we started all over again. I was prescribed graduating doses and frequency of anti-inflammatories and muscle relaxants and now oral steroids and I was returned to physical therapy. Finally, botox injections, which are not helping with the pain.

The only treatment I am getting now is occasional botox and pain medications. This is not making me better.

Dystonic storms

In some patients, the problem of cervical dystonia and spasmodic torticollis can be very severe and possibly life-threatening. In our article summary of our published case histories, dystonic storms in four patients with hypermobile Ehlers-Danlos Syndrome describes we state that we believe we have presented first-time evidence to the medical community of four cases of patients with hypermobile Ehlers-Danlos Syndrome whose dystonic storms were reproduced by vascular occlusion (the mechanical blockage) of either the vertebral or carotid arteries in the neck. This condition caused intermittent cerebral ischemia (transient, temporary stroke), which was documented by cervical motion during upright transcranial doppler examination. (An ultrasound test used to measure cerebral blood flow velocity). Please see our article Dystonic storms in four patients with hypermobile Ehlers-Danlos Syndrome

What are we seeing in this image?

When a patient who is suffering from dystonia comes into our clinics looking for help and some answers it is because their condition has worsened. They have suffered from many symptoms beyond a neck or head tilt and muscle spasms and tremors. These symptoms can range from vision problems, hearing problems, difficulty swallowing, lightheadedness, dizzy spells, and more. The reason that some suffer from worsening and developing symptoms is from cervical spine instability. Here we see the relationship between the C1 nerve, the vertebral artery, and the nearby muscles. When there is malrotation of the neck, these nerves and arteries can be compressed, worsening symptoms. 

When a patient who is suffering from dystonia comes into our clinics looking for help and some answers it is because their condition has worsened. They have suffer from many symptoms beyond a neck or head tilt and muscle spasms and tremors. These symptoms can range from vision problems, hearing problems, difficulty swallowing, lightheadedness, dizzy spells, and more. The reason that some suffer from worsening and developing symptoms is from cervical spine instability. Here we see the relationship between the C1 nerve, the vertebral artery, and the nearby muscles. When there is malrotation of the neck, these nerves and arteries can be compressed, worsening symptoms. 

At this point, you may be wondering, “why did it take so long for someone to figure out what is wrong with me?”

At this point, you may be wondering, “why did it take so long for someone to figure out what is wrong with me?” You are not the only one. Doctors are wondering this too. A November 2019 study in the medical journal Movement Disorders, (1) lead by researchers at the University of California at San Francisco and including data from the Departments of Neurology, Massachusetts General Hospital, Mount Sinai Beth Israel, New York, and Rush University Medical Center among others suggested:

Characteristics of a Cervical dystonia patient include:

This study concludes simply with: “Cervical dystonia incidence is greater in women and increases with age. Diagnostic delay is common and associated with adverse effects.”

This may explain why you are on a lot of medicine that does not help and your condition got worse

When a patient who is suffering from dystonia comes into our clinics looking for help and some answers it is because their condition has worsened. They have rapid blinking of the eyes, may have become light-sensitive, and may have developed head tremors. The failed efforts to treat this worsening condition are manifested with a long medical history in the form of the remaining pills in their prescription bottles or blister packs. These people will tell us about trial and error regimens that went on for months, maybe years in trying to determine appropriate doses and optimal combinations of medications that would work for them. Many patients would call this the “most frustrating and depressing,” part of their treatments because the medications did not help them and only gave them unwanted side effects.

These prescriptions may have included Duopa®, Rytary®, Cogentin®, Austedo®, Xenazine®, Valium®, Lioresal®, Gablofen® among others. If you have been prescribed these medications you know that in one way or another they act upon neurotransmitters (such as dopamine) to reduce signals to the brain calling for spasms. You also know that they may make you drowsy, possibly incoherent depressed, anxiety-ridden, and nervous.

People who come to our clinics are usually very tired of taking these medications.

Cervical dystonia and Spastic Torticollis is not a problem of Valium® deficiency.

In the case above, the patient was looking for answers. If you are reading this article, you are looking for answers as well. One answer suggested to you may have been physical therapy.

When you want an opinion on why physical therapy may not be helping you or other people with Cervical dystonia and Spastic Torticollis, you should start by talking to other physical therapists and neuro specialists.

In June 2018, in the journal Physiotherapy Theory and Practice (2), a team of neuro specialists from leading universities and research centers in Spain and Chile examined how just a relaxation program, without physical or aquatic therapy, could help people with Cervical dystonia and Spastic Torticollis.

“Classic physical interventions for cervical dystonia have focused on treating motor (neuro) components or, on motor components and relaxation programs. However, no cervical dystonia treatment study has focused on a relaxation program alone. (In this study the researchers) developed a pilot study to assess whether a therapy completely based on a relaxation program could improve the physical and mental symptomatologies of patients with Cervical dystonia.”

What the researchers found after the relaxation program training was a significant interaction between treatment and time with regard to the quality of life, pain, and mood. Further, a therapy based on whole-body relaxation improved the symptoms of patients with cervical dystonia.

Not the first time you were told to relax

You have likely been told that relaxation and medication would be helpful to you. But how can these things be helpful if the medications you are taking may be causing the symptoms you are trying to manage. In the above study, the very first thing that the doctors noted was a reduction in depression. The medications above, carry warnings about increased depression.

Here is an interesting study that came out in November 2018. (3) What makes this study interesting is that the authors are neurologists, physical therapists, and psychotherapists and they are discussing relaxation, physical therapy, depression, and a comprehensive program for the management of dystonia.

This is what these researchers were looking at:

The study results:

Is it all your head or is it all in your neck? When the doctor can’t help you, you get sedated.

When patients come into our clinics, after we review their history medical history and look at the prescription medications they were on, they will often tell us about management programs that focused on coping skills, disease management skills, and improving quality of life skills. Why were they on this program? Because they were told that their problem of Cervical dystonia and Spastic Torticollis was a problem that needed to be managed by coping, stress management, anxiety medications, etc. Why? Because the situation would likely improve.

In the review of medications above, how many cause drowsiness?

How many times did we have a patient tell us, “everyone thinks this is all in my head, I need a psychiatrist.” The reason that these people walked into our clinic is that they did a lot of research online and started to realize that the problem they are suffering from may be a problem of cervical ligament wear and tear, there may actually be a physical problem that can be fixed. Perhaps they were NOT suffering from Valium® deficiency.

Cervical dystonia and substance abuse

A 2018 study from researchers at the Department of Neurology, Henry Ford Health System, Henry Ford Hospital, Baylor College of Medicine, University of Arkansas Medical Center, Emory University, Rush University, University of Rochester, and Washington University at St. Louis wrote their warnings in the Journal of Neurology (4) of the potential risk factors for substance abuse in cervical dystonia patients, especially those who were younger age and male gender with co-existing anxietydepression, and other psychiatric problems. Caution, they wrote, should be exercised when prescribing drugs with the potential for abuse in these patients.

Brain and Behavior: Non-Motor Symptoms, anxiety, psychiatric symptomology.

Let’s look at a July 2021 paper published in the medical journal Brain and Behavior (5) lead by the Neuroscience and Mental Health Research Institute, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University. In this paper, non-motor symptoms are described as well-established phenotypic components (symptoms) of adult-onset idiopathic (unknown origin of spontaneously developing symptoms), isolated, focal cervical dystonia. However, an improved understanding of their clinical heterogeneity is needed to better target therapeutic intervention. Here, we examine non-motor phenotypic features to identify possible adult-onset idiopathic, isolated, focal cervical dystonia subgroups.

Explanatory note: The doctors are recommending a better awareness of some of the non-motor symptoms of people with cervical dystonia. Non-motor symptoms may have been explained to you at the doctor’s office as these symptoms that you may be suffering from.

What the doctors did in this research was to examine patients with adult-onset idiopathic, isolated, focal cervical dystonia at two specialist neurology clinics. Non-motor assessment included psychiatric symptoms, pain, sleep disturbance, and quality of life, assessed using self-completed questionnaires or face-to-face assessment.

Results: The researchers suggested that analysis of the two patient groups suggests two predominant phenotypic subgroups, one consisting of approximately a third of participants in both cohorts, experiencing increased levels of depression, anxiety, sleep impairment, and pain catastrophizing, as well as, decreased quality of life. The other group has less severe symptoms. The researchers concluded: “Improved understanding of these symptom groups will enable better targeted pathophysiological investigation and future therapeutic intervention.”

In our experience in many patients, addressing the cause of their problems could lead to a significant decrease in feelings of anxiety, depression, irritability, and emotional wellness. In the next sections, we will discuss treatments that address the underlying cervical instability as a cause of cervical dystonia.

C1-C2 Surgery and Botox

In May 2020 surgeons in the Journal of Clinical Neuroscience (6) described a successful treatment of atlantoaxial rotatory fixation (the C1 and or C2 have displaced and they are preventing each other from achieving proper rotation.)

This is a success story: Let’s recap

Here is the journey from torticollis symptoms to torticollis symptom relief. Six months, opioids, surgery, traction. Could these results be achieved without Botox and surgery? Possibly, if that route was taken. See below for other case histories where surgery was not needed.

More on Botulinum toxin A – (36%) were referred for deep brain stimulation surgery

A March 2021 study in the journal Movement Disorders Clinical Practice (7) lead by the Department of Neurology, Manchester Centre for Clinical Neurosciences Salford writes: “Botulinum toxin A (BoNT-A) is an effective treatment for cervical dystonia. Nevertheless, up to 30% to 40% of patients discontinue treatment, often because of poor response. The British Neurotoxin Network (BNN) recently published guidelines on the management of poor response to BoNT-A in cervical dystonia, but adherence to these guidelines has not yet been assessed.” In other words, were doctors following guidelines to improve response, was there improvement if the adjustments were made to the Botulinum toxin A injections?

Seventy-six patients with poor response

Of 76 patients identified with poor response, 42 (55%) had a suboptimal response and, following BNN recommendations, 25 of them (60%) responded to adjustments in Botulinum toxin A injections dose, muscle selection, or injection technique.

Of the remaining 34 (45%) patients with no Botulinum toxin A injections response, 20 (59%) were tested for immune resistance, 8 (40%) of whom showed resistance. Fourteen (18%) of all patients were switched to Botulinum toxin B injections, and 27 (36%) were referred for deep brain stimulation surgery. In those not immune to BoNT-A, clinical improvement was seen in 5 (41%) after adjusting their dose and injection technique.

A patient case of Dystonic Storms

This video shows a patient in a Dystonic Storm, an uncontrollable and severe spasm attack.

Cervical dystonia and posture control – A clue that ligament wear and tear is THE problem

Why do you sway too much? Is it a neurological problem? Is it a muscular problem?


What is your Center of Pressure? How does it relate to posture control?

A study from the University of Antwerp published in the journal Experimental Brain Research (8looked at the Cervical dystonia patient’s inability to have posture control. Some patients, perhaps including yourself, with Cervical dystonia, sway too much when they are standing and they sway too much when they are sitting. Swaying is a normal balance mechanism when we stand and when we sit. Excessive sway is caused by impaired cervical sensorimotor control (sense of position and place). The question is, what causes you to sway too much? Is it a neurological problem? Is it a muscular problem?

So here is a study from neurologists and physical therapists with patients who have the classical Cervical dystonia problems of involuntary muscle contractions leading to an abnormal head posture or movements of the neck and swaying.  These patients it should be pointed out were receiving Botox injections which we will discuss below.

The same research team, concurrently published data in the journal Brain and Behavior that cervical sensorimotor control can be trained through exercise and this might be a potential treatment option for therapy, adjuvant to botulinum toxin injections. (see below on Botox®). (9) Botulism toxin injected into the tight muscles, paralyzes and relaxes them and allows the head to straighten for a period of time. Although this may provide temporary pain relief, it does not get at the root of the problem – weak and damaged cervical ligaments, which are due either to an injury or another cause.

In this video, Ross Hauser, MD gives a brief outline of treatment

Learning points from this video:


So what is happening in these studies and similar studies? Cervical instability, Cervical positioning, and posture. The problem is instability in the neck

Let’s go to the muscle spasms which are prevalent in Cervical dystonia. The body is trying to fix these problems on its own by spasms and using muscles, instead of ligaments, to provide temporary stability.

The trail gets hotter – Botox® Injections and Prolotherapy Injections

Botox® Injections: Injection of the botulism toxin to prevent painful muscle spasms.

Botox injections are not disease altering – they do not fix what is causing the muscle spasms

It is clear that the main attribute of Botox injections is the reduction of pain through the management of painful muscle spasms. This is symptom suppression. It should be noted that Botox injections are not disease-altering, meaning they do not fix what is causing the muscle spasms.

In December 2017, researchers in Portugal published in The Cochrane Database of Systematic Reviews (10)

Despite good results with Botox, these researchers wrote of the following concerns: 

Botox is effective for 12 weeks then benefits evaporate

University researchers in Belgium have released their findings in the September 8, 2018 edition of the Journal of Neurology, (11) here is what they found as to the long-term effectiveness of Botox injections in the treatment of Cervical Dystonia.

Why do cervical dystonia patients discontinue botulinum toxin therapy? The most common reason for discontinuing therapy is the lack of benefit. Here is another study.

In September 2017, doctors from the Dystonia Coalition Investigators, Emory University, Rush University Medical Center, Washington University School of Medicine, and from the National Institute of Neurological Disorders and Stroke, National Institutes of Health Bethesda, Maryland tried to answer the confounding question. Why stop Botox?

Publishing their findings in the medical journal Toxicon: Official Journal of the International Society on Toxinology, (12they wrote:

The research describes studies that provide strong evidence that botulinum toxin is both safe and effective in the treatment of cervical dystonia for many years.

Here you have the evidence presented in this study that botulinum toxin does not repair the problems causing the symptoms.  Now we present the case for Prolotherapy.

The difference between Botox injections and Prolotherapy is that Prolotherapy addresses the neck muscle spasms by addressing the instability caused by the cervical ligaments.

The difference between Botox injections and Prolotherapy is that Prolotherapy addresses why neck muscle spasms. For most people, the reason for chronic neck muscle spasms is because the underlying ligaments are damaged/stretched/weakened, thus, they can no longer stabilize the neck. The brain then recruits the neck muscles to do it.

Conversely Botox injections simply treat the spasm and mask the real problem. It is expensive and temporary. If Botox is something you have been considering, think again and consider Prolotherapy for a permanent fix. Most patients require 3-6 visits spaced about one month apart.

Another patient with Cervical dystonia/Spastic Torticollis

Here is another story of a typical patient. The patient struggled with Spastic Torticollis for several years prior to coming to our office. Because Spastic Torticollis is a condition in which the head will twitch or turn uncontrollably and tilt to one side, our patient needed to turn her body to the side in order to see straight ahead.

In addition to the social stigma, the patient experienced debilitating neck pain. Her attempts to relieve her pain with physical therapy, muscle relaxants, and Valium® proved unsuccessful. Spastic Torticollis is not due to a Valium® deficiency.

Upon examination, the patient exhibited a positive “jump sign” when the cervical vertebral ligaments were palpated.

The patient’s story continues with Caring Cervical Realignment Therapy

For this patient, a better approach was to strengthen the loose ligaments in the neck with Prolotherapy and, if a significant shortening of the neck muscles has already occurred, to supplement the Prolotherapy treatments with botulism toxin injections. Once a ligament is loose, as occurs in a neck injury, the overlying muscles must tighten to support the structure, and if the ligaments on only one side of the neck are loose, muscles on that side will spasm, resulting in spastic torticollis. When strengthened with Prolotherapy, the weakened ligaments of the neck will cause the muscle spasms to cease and allow the neck to regain its full range of motion.

In our patient’s story, the patient’s twitching neck made the treatment difficult, but with persistence, it was successfully completed. After the second treatment, The patient reported that she could sleep facing to the left. After five treatments, the patient became pain-free, with the ability to turn their head in both directions.

Caring Cervical Realignment Therapy (CCRT) was developed by Ross Hauser, MD after decades of treating patients with neck disorders, including cervical instability and degenerative disc disease, to provide long-term solutions to symptoms such as headaches, neck pain, dizziness, vertigo, lightheadedness, imbalance and a host of other symptoms attributed to neck injuries. CCRT combines individualized protocols to objectively document spinal instability, strengthen weakened ligament tissue that connects vertebrae, and re-establish normal biomechanics and encourage restoration of lordosis.

The research

In the medical journal The Open Orthopaedics Journal, (13) our research team provided clinical insights supported by research that:

Therefore, we propose that in many cases of chronic neck pain, the cause may be underlying joint instability due to capsular ligament laxity.

Furthermore, we contend that the use of comprehensive H3 Prolotherapy appears to be an effective treatment for chronic neck pain and cervical instability, especially when due to ligament laxity. The technique is safe and relatively non-invasive as well as efficacious in relieving chronic neck pain and its associated symptoms.

Summary and contact us. Can we help you? How do I know if I’m a good candidate?

We hope you found this article informative and it helped answer many of the questions you may have surrounding the problems of cervical spine instability, cervical dystonia, and spasmodic torticollis treatment. Just like you, we want to make sure you are a good fit for our clinic prior to accepting your case. While our mission is to help as many people with chronic pain as we can, sadly, we cannot accept all cases. We have a multi-step process so our team can really get to know you and your case to ensure that it sounds like you are a good fit for the unique testing and treatments that we offer here.

Please visit the Hauser Neck Center Patient Candidate Form

 

This is a picture of Ross Hauser, MD, Danielle Steilen-Matias, PA-C, Brian Hutcheson, DC.

Brian Hutcheson, DC | Ross Hauser, MD | Danielle Steilen-Matias, PA-C

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References

1 LaHue SC, Albers K, Goldman S, Lo R, Gu Z, Leimpeter A, Fross R, Comyns K, Marras C, de Kleijn A, Smit R, Katz M, Ozelius LJ, Bressman S, Saunders-Pullman R, Comella C, Klingman J, Nelson LM, Van Den Eeden SK, Tanner CM. Cervical dystonia incidence and diagnostic delay in a multiethnic population. Mov Disord. 2019 Nov 27. doi: 10.1002/mds.27927. [Epub ahead of print]
2 Isabel Useros-Olmo A, Martínez-Pernía D, Huepe D. The effects of a relaxation program featuring aquatic therapy and autogenic training among people with cervical dystonia (a pilot study). Physiotherapy Theory and Practice. 2018 Jun 25:1-0. [Google Scholar]
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6 Akiyama Y, Takahashi H, Saito J, et al. Surgical treatment for atlantoaxial rotatory fixation in an adult with spastic torticollis: A case report. J Clin Neurosci. 2020;75:225‐228. doi:10.1016/j.jocn.2020.03.017 [Google Scholar]
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12 Jinnah HA, Comella CL, Perlmutter J, Lungu C, Hallett M, Dystonia Coalition Investigators. Longitudinal studies of botulinum toxin in cervical dystonia: Why do patients discontinue therapy?. Toxicon. 2017 Sep 6.  [Google Scholar]
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This article was updated July 23, 2021

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