Cervical dystonia and spasmodic torticollis treatment

Ross Hauser, MD

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 felt 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 come and go.

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.

Is it always a neurological disorder?

It is generally assumed that tremor, dystonia, tics, myoclonic jerking, chorea, cramps, dyskinesias, Meige syndrome (idiopathic cranial-cervical dystonia), disturbed eye movements, blepharospasms, torticollis, hemifacial spasm and many other unusual movement disorders are of central (brain) origin, with the physician and patient not considering a neck cause.

We believe, in some cases, the condition is generally caused by a rotatory subluxation of C1-C2. In our experience, many of the patients give a history of whiplash or neck trauma and a preceding history of neck pain. The condition causes stiffness in the neck with muscle spasms, which develop into a dystonic or torticollis reaction.

We will discuss the various options below.

Cervical dystonia, spasmodic torticollis, Cervical torticollis, congenital torticollis.

There are many variants of the name. This article will focused on the adult onset of the problem with cervical spine degeneration as its point of origin. We will discuss the problem of distorted messages between the brain and cranial nerves with focus on the vagus nerve. Let’s explain this a little further:

“idiopathic”

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. While the condition can be caused by medications, neurodegenerative disorders, cervical spine disorders, it is typically classified as idiopathic or “no known cause.”

While most of the movement disorder cases we see in our offices are thought to be idiopathic or of “no known cause,” it really means that the possibility of cervical ligament injury as the root cause has not been explored. At a minimum, the person with any kind of tremor, including essential tremor where the hand starts to shake for no known reason or the pill rolling hand tremor of Parkinson’s’ disease, should at least ask himself, “Do I have any symptoms in my neck, head or face such as pain, clicking, or grinding in the neck or TMJ with movements? Do I self-manipulate the jaw or neck? Have I seen a chiropractor to adjust my neck or TMJ?” If the answer to any or some of these questions is, “Yes!” then cervical ligament injury should be explored.

Cervical dystonia is being caused by cervical spine instability

As mentioned, 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. For a further discussion please see my article: Ross Hauser, MD Reviews Cervical Spine Instability and Potential Effects on Brain Physiology.

Back in 1993, at about the time we first opened our doors to cervical spine instability patients, doctors at the Mayo Clinic (1) wrote about  five patients in whom cervical dystonia developed immediately after relatively mild trauma to the neck. They go on to describe: “Four of the five patients had persistent contractions of all cervical muscles including the trapezius muscles, which almost completely prevented motion of the neck and resulted in muscle hypertrophy. The condition persisted unabated in all patients for the entire period of follow-up (duration, 1 1/2 to 3 years).”

Why these patients cases presented special challenges was described further: “Pharmaceutical interventions, which had been used previously for idiopathic nontraumatic cervical dystonia, failed to benefit these patients. Two patients who received injections of botulinum toxin had no more than mild benefit. Selective denervation was inapplicable because of the widespread involvement of all cervical muscles in all but one patient. Physical therapy was essentially ineffective. . . ”

More than 30 years later we still see damaged cervical ligaments  from a post-traumatic injury such as whiplash or the degenerative wear and tear of a lifetime can no longer hold the bones of the neck in place. We see the vertebrae now wandering around compressing and causing compression of nerve roots and neurological-degenerative-like symptoms.

Spastic Torticollis or Cervical Torticollis

Something, of typically unknown origin, is causing cervical muscle spasm and involuntary neck posturing, twisting (the word torticollis itself is translated from Latin meaning “twisted neck) and movement. The patient who we see will typically presents with “cock robin” deformity with the head tilting to one side and turning to the opposite side.

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.

In almost every movement disorder case that we have seen over the past 30 years, including the dystonias such as blepharospasm (repetitive forceful eyelid closure), spasmodic dysphonia affecting speech, oromandibular dystonia (tongue, jaw opening and jaw closing), and spasmodic torticollis, there is a history of traumatic injury to the neck. Similarly, different doctors and researchers have noticed that other movement disorders, including tics and tremors, occur after neck and head traumas.

Article outline:

Part 1: Quality-of-life issues in patients with cervical dystonia

  • Experiences of people of anxiety, panic, depression.
  • Patients and doctors rarely agree on how severe the patient’s dystonia is.
  • Is it all your head or is it all in your neck? When the doctor can’t help you, you get sedated.
  • Cervical dystonia and substance abuse.
  • Brain and Behavior: Non-Motor Symptoms, anxiety, cognitive dysfunction, psychiatric symptomology.
  • The basic ability to interact with other people.
  • Speculation on cognitive decline.

Part 2: Diagnosis of cervical dystonia

  • “Why did it take so long for someone to figure out what is wrong with me?”
  • Diagnosing the relationship between isolated head tremors and cervical dystonia.
  • Identifying types of Idiopathic cervical dystonia.
  • Cervical, oromandibular dystonia, and TMJ Disorders

Part 3: Treatments

  • Medications
  • You have likely been told that relaxation and medication would be helpful.
  • Cannabis
  • Physical Therapy
    • Physical Therapy and posture control?

Part 4: Botox and . . .

  • Botox injections are not disease altering – they do not fix what is causing the muscle spasms.
  • The different types of botulinum toxin, why one may be better than another.
  • Botox is effective for 12 weeks then benefits evaporate.
  • 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.

Part 5: Deep brain stimulation

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

Part 6: Surgical Options

  • Cervical Fusion Surgery
    • c5-c7 levels.
    • c1-c7 levels.

Part 7: Cervical instability dystonia

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

Part 8: Dystonic storms


Quality-of-life issues in patients with cervical dystonia

Patients suffer from quality-of-life issues, or better said diminished quality-of-life issues when present with cervical dystonia. This is not a controversial statement. What is controversial is how much, in their doctor’s mind and opinion, are they suffering. As we will see, rarely are doctors and patients in agreement.

A July 2023  paper in the Journal of clinical medicine (2) describes quality-of-life issues in patients with cervical dystonia.

The authors report on patient self-reporting of several problems with daily activities, mobility and self-care that negatively impact their quality-of-life. The authors also note that looking into these problems is something rarely touched on in the medical literature, but, in more recent studies, the evaluation of quality-of-life has increasingly been recognized as important in the assessment and management in cervical dystonia patients. Beyond, motor symptoms, clinicians are starting to look at other, non-motor symptoms and the impact on the patient’s physical and mental health.

Psychological disorders are frequently reported in cervical dystonia

The authors note, psychological disorders are frequently reported in cervical dystonia. Depression and anxiety, in particular, generally appear to be associated with low quality-of-life regardless of the severity of motor symptoms. In addition, the most frequently reported emotional problems are related to the stigma linked to the disease and to a feeling of insecurity around new people, problems with friends and family, fears regarding the disease and feelings of sadness. A significant percentage of patients report difficulties in performing recreational activities, meeting job demands, difficulty in attending public places, discomfort in public, having concerns with people’s reaction to illness and isolation. The stigma is associated with the feeling of body deformation.

Further, fatigue and excessive daytime sleepiness add to the patient’s depression and pain. Pain as a stress factor, contributes to increasing the likelihood of depression. The prevalence of impaired sleep quality in patients with cervical dystonia is between 40% and 70%. Sleep disorders are very common in patients with cervical dystonia, and they often occur in comorbidity with anxiety and depression, significantly correlating with poor quality of life.

Experiences of people of anxiety, panic, depression

Then your story may have taken a turn like these:

All the treatment I am getting at this point is Klonopin for panic disorders and anxiety.

After I started receiving treatments, specifically botulinum toxin injections, I started to feel better. I was advised that if my condition worsened, we could continue with the botulinum toxin.  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 psychological. 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.

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

My journey has been going on your years. When I first developed neck pain and spasms I went to my regular doctor 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 general practitioner 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 botulinum toxin and pain medications. This is not making me better.

A quick note on sleep:

Pain specialists in Germany write in a January 2024 paper (3): “Pain can dominate the clinical picture in patients with cervical dystonia . . .It is important to ask patients with cervical dystonia about pain and to consider it in treatment planning and evaluation. Vice versa, if pain is present the possibility of a causative dystonia should also be considered.”

Patients and doctors rarely agree on how severe the patient’s dystonia is.

Throughout this article we will see that self-reported patient outcomes and the belief of successful outcomes of doctors do not always agree.

An August 2023 paper in the journal Movement disorders clinical practice (4) questions doctor reported outcomes versus patient self-reported health issues in determining the severity of a patients cervical dystonia. The authors write: “Assessing disease severity can be performed using either clinician-rated scales or patient-rated outcome tools. These two measures frequently demonstrate poor correlations.” The author’s thinking is that this correlation would improve if the issues of quality-of-life concerns were included, such as anxiety, depression, and disability. The results of their research indicated: “the results of motor assessments in a patient reported outcomes for cervical dystonia cannot be fully appreciated without simultaneous assessment of non-motor co-morbidities.”

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 (5) 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.

A January 2024 paper in the journal (6) Psychology, health & medicine wrote: “As cervical dystonia is a highly visible condition, people with Cervical dystonia can experience stigma, which may lead to unhelpful coping strategies and increased psychological distress.  . . analyses showed increased stigma and maladaptive coping (e.g. substance use, behavioral disengagement – inability to manage anxiety and stress) were both significantly related to increased distress, lower wellbeing and lower quality of life.”

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

Let’s look at a July 2021 paper published in the medical journal Brain and Behavior (7) led 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.

A February 2024 study in the journal Neurological sciences (8) on twenty patients with idiopathic cervical dystonia. In their review, the researchers found idiopathic cervical dystonia patients showed ANS dysfunction at clinical and neurophysiological levels, (“Non-motor symptoms, such as sleep disturbances, fatigue, neuropsychiatric manifestations, cognitive impairment, and sensory abnormalities,”) reflecting an abnormal parasympathetic-sympathetic interaction likely related to abnormal neck posture and neurotransmitter alterations (simply distorted messages in the nervous system).

The basic ability to interact with other people

There is more to social interaction than being in a “bad mood.” In this September 2023 study in the journal Clinical parkinsonism & related disorders (9), the authors write of an association between observed poorer socio-cognitive performance (the basic ability to interact with other people based) in recognizing emotions from facial expressions, and, depressive symptoms indicates potential mood implications of socio-cognitive dysfunction (the inability to interact).  . . (Recognizing socio-cognitive dysfunction) may facilitate understanding of behavioral changes for friends and family of individuals with socio-cognitive difficulties and ease strain on important social relationships. In other words, the dystonia patient may not recognize a frown or a smile and cannot act in response to these facial expressions.

Speculation on cognitive decline

An October 2023 study in the journal Clinical parkinsonism & related disorders (10) The researchers note that previous published studies have demonstrated diverse changes in cognition in patients with Cervical dystonia. However, the connection between cognitive behavior, motor symptoms and quality of life remains understudied.

In this study, the researchers tested and assessed 13 patients (8 women, average age about 60) with adult onset idiopathic isolated cervical dystonia who had completed a battery of cognitive assessments – general intellectual functioning, verbal and visual memory, executive functions and social cognition measures.

  • For the most part, the patients trended towards average outcomes on the majority of tests, poorer performance than expected averages were noted in measures of social cognition, word retrieval, spatial working memory and, processing speed.

Part 2: Diagnosis


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, (11) led by researchers at the University of California at San Francisco and included data from the Departments of Neurology, Massachusetts General Hospital, Mount Sinai Beth Israel, New York, and Rush University Medical Center among others suggested:

  • The frequency and consequences of delayed Cervical dystonia diagnosis is poorly understood
  • It should be looked for more in women than men
  • It should be looked for in older patients

Characteristics of a Cervical dystonia patient include:

  • A likelihood that they had a delayed diagnosis of Cervical dystonia based on the fact that half of this study’s participants reported that they did not get a Cervical dystonia diagnosis initially.
  • A diagnosis of Cervical dystonia was more common (or faster) when the patient had:
    • essential tremor
    • cervical disc disease
    • neck sprain/strain
    • anxiety
    • and depression

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.”

Diagnosing the relationship between isolated head tremors and cervical dystonia.

A November 2021 study in the medical journal Parkinsonism and Related Disorders (12) wrote that isolated head tremor, a pathological condition characterized by head tremor without dystonic postures (tilt or twisted posture) or tremor in other body parts, has recently been suggested to be a form of dystonia. The researchers of this study also noted that it is still unclear whether isolated head tremor precedes dystonia or remains unmodified over time.

In this study, 20 patients with isolated head tremors were enrolled. At the 5-year follow-up examination, 15 (75%) of the 20 patients with isolated head tremors showed dystonic postures in the neck, while the remaining 5 patients (25%) had only isolated head tremors. This study demonstrated that patients with isolated head tremors may develop cervical dystonia over time.

An October 2023 study in the journal Clinical parkinsonism & related disorders (13) “Head tremor is a common symptom of essential tremor (ET) and cervical dystonia (CD). In clinical practice, it is often difficult to distinguish between these two conditions, especially in cases where head tremor predominates.”

Identifying types of Idiopathic cervical dystonia

Researchers writing in the Journal of neural transmission (14) studied the natural course progression of idiopathic (unknown) cervical dystonia of 100 patients from their botulinum toxin clinics (average age of idiopathic cervical dystonia about 46) over a period average of 17.5 years with follow-ups during botulinum toxin therapy and with semi-structured interviews.

Idiopathic cervical dystonia-type 1 the represents the standard course

The researchers identified two paths based on symptom development of more or less than 6 months. Idiopathic cervical dystonia-type 2 was less frequent than Idiopathic cervical dystonia-type 1 which represents the standard course, had a more rapid onset (weeks vs. years), a higher remission rate (92% vs 5%) and a higher prevalence of excessive psychological stress preceding Idiopathic cervical dystonia (63% vs 1%).

The researchers concluded: “These findings will improve prognosis, treatment strategies and understanding of underlying disease mechanisms. They contradict the widespread fear of patients of a constant and continued decline of their condition.”

Cervical, oromandibular dystonia, and TMJ Disorders

Please see my article: TMJ: The other symptoms: Neck pain, muscle spasms, myofascial pain, breathing problems, digestive disorders and dizziness for a more detailed discussion.

In October 2023, the results of a study testing the impact of TMJ appliances on cervical dystonia was published in the journal Diagnostics (15). First, the connection between TMJ and cervical dystonia is offered: “The temporomandibular joint (TMJ) is an anatomically important area with close proximity to neural networks. It is richly innervated by sensory nerves, primarily branches of the trigeminal nerve. While the trigeminal nerve itself primarily carries sensory information, its interactions with other cranial nerves can influence motor functions and contribute to various motor disorders.” Explanatory note: TMJ dysfunction or TMD, can influence symptom severity in cervical dystonia. As this study states: “The overload in the TMJ may significantly affect this neural system due to the crucial anatomical connections of the TMJ.”

The treatment suggestion is: “By reducing and evenly distributing the load in the TMJ through a soft appliance, an enhancement of the neural system in this region could potentially occur. This mechanism has the potential to provide patients with the opportunity to facilitate their own healing by creating a healthier TMJ environment.” In other words, correct the TMJ problem, maybe fix the cervical dystonia. The study relays this as: “The severity of dystonic contractions decreased after wearing (the soft appliances) in (this) study.” Also noted was previous research which found symptom relief for dystonia with hard occlusal stabilization appliance.”

A February 2023 paper in the journal Seminars in neurology (16) offers this assessment and connections between cervical and oromandibular dystonia:

“Oromandibular dystonia (masticator muscles, tongue, and facial muscles) includes dystonic involvement of various jaw and mouth muscles. This can present with involuntary jaw opening, closing, lateral (jaw) deviation, protrusion, or retraction movements, with or without jaw tremor. Like cervical dystonia, the uncontrolled muscular contraction frequently leads to muscular overuse, resulting in jaw tension, pain, and spasms, and may also present as bruxism.” The research continues that chewing (masticator muscles)  typically results in symptomatic worsening.

 


Part 3: Treatments


Medications

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.

You have likely been told that relaxation and medication would be helpful.

Why would you be prescribed medications? 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.

Here is an interesting study that came out in November 2018. (17) 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:

  • Functional movement disorders (including dystonia) are conditions of abnormal motor control thought to be caused by psychological factors. These disorders are commonly seen in neurologic practice, and the prognosis is often poor.
  • No consensus treatment guidelines have been established; however, the role of physical therapy in addition to psychotherapy has increasingly been recognized.
  • This study reports patient outcomes from a multidisciplinary treatment program using motor (neurological) retraining strategies.

The study results:

  • Twenty-four of the 32 patients were female with an average age of 49.1 years and an average symptom duration of 7.4 years. Dystonia was reported in 31.2% of the patients. Patients who completed a one-week program that included psychotherapists, relaxation, stress management, and physical therapy saw encouraging results. This research appeared in PM & R: The Journal of Injury, Function, and Rehabilitation.

Cannabis

A June 2023 study published in the Frontiers in neurology (18) A subset of dystonia patients who use medical cannabis under clinical observation reported significant subjective improvement during 30 months of use in average.

Previously a September 2022 paper (19)  in the journal Parkinsonism and related disorders wrote: “Clinical research on cannabinoids for motor and nonmotor symptoms in Parkinson’s disease, Huntington’s disease, Tourette’s syndrome, dystonia, and other movement disorders to date are promising at best and inconclusive or negative at worst.

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 (20), 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.”

  • The researchers included fifteen people in the study. The 15 received individual sessions of aquatic (Watsu) therapy and autogenic training (meditation, etc). These 15 people were compared to 12 people in a control group.
  • The researchers wanted to measure
    • quality of life
    • pain
    • and mood

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.

Physical Therapy and posture control?

A study from the University of Antwerp published in the journal Experimental Brain Research (21looked 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 Center of pressure displacements was doubled in patients without head tremors and tripled in patients with dystonic head tremors.
    • What does this mean? What is the Center of Pressure? Simply, when you sway, the sway has to be measured against a point of “center,” the point you would return to that would be considered a normal starting point when you swayed back. The Center of Pressure and the Center of Gravity work together to help you maintain balance.
    • What the researchers found was that your center of pressure, as a Cervical dystonia patient, is displaced, it moves out of position. If you do not have head tremors, it is displacements were doubled in how much they moved, and if you had head tremors, tripled in how much they moved.
    • You are lost in a way because you are having a hard time finding your way back to a center point – you can’t maintain posture.
  • The researchers concluded “Treatment is currently focused on the cervical area. Further research towards the potential value of postural control exercises is recommended.” When you exercise, you are attempting to stabilize cervical instability. This is the realm of the cervical ligaments.

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®). (22) 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.

A November 2022 paper from Jena University Hospital in Germany and published in the journal Toxins (23) discusses the role of physical therapy in relationship to botulinum neurotoxin injection in improving the symptoms of cervical dystonia in terms of pain, function and quality of life. To assess this relationship, the researchers examined patient data from six previously published studies.

What the researchers found was that physical therapy, added as an adjunct treatment to basic botulinum neurotoxin injection therapy shows a possible benefit for patients suffering from cervical dystonia. “While the effect of physical therapy on posture is still up for debate; one can conclude that adjunctive physical therapy might improve the quality of life of cervical dystonia patients and may alleviate disability. However, there are no clear recommendations regarding concrete therapy intervention, its duration and frequency . . . cervical dystonia is a chronic disorder; hence, a short-term therapy sequence does not seem appropriate.”


Part 4: Botulinum toxin


Botulinum toxin injections are standard therapy for dystonia. Some people will have great success with the treatment, others may not. This lack of success is described further in this section.

  • Injection of the botulism toxin is a temporary treatment, however, it can provide pain relief for up to three months. Patients may be or are required to frequently return for more Botox injections.

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

It is clear that the main attribute of botulinum toxin is the reduction of pain through the management of painful muscle spasms. This is symptom suppression. It should be noted that botulinum toxin 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 (24)

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

  • “We have moderate certainty in the evidence that a single botulinum toxin type A treatment session is associated with a significant and clinically relevant reduction of cervical dystonia-specific impairment, including severity, disability, and pain, and that it is well-tolerated when compared with placebo.
  • There is also moderate certainty in the evidence that people treated with botulinum toxin type A are at an increased risk of developing adverse events, most notably dysphagia (swallowing difficulties) and diffuse weakness (widespread muscle weakness).
  • There are no data from randomized control trials evaluating the effectiveness and safety of repeated botulinum toxin type A injection cycles.
  • There is no evidence from randomized control trials to allow us to draw definitive conclusions on the optimal treatment intervals and doses, the usefulness of guidance techniques for injection, the impact on quality of life, or the duration of treatment effect.”

In June 2023, in the journal Toxins, (25) doctors from the University of Salerno in Italy offered guidelines and suggestions for doctors in addressing the problems of toxin resistance and patient concepts into stopping the treatment.

“Intramuscular injections of botulinum neurotoxin every 12 to 16 weeks have become the first-line option for cervical dystonia. Despite the remarkable efficacy of botulinum neurotoxin as a treatment for cervical dystonia, a significantly high proportion of patients report poor outcomes and discontinue the treatment.” The researchers suggest reasons for treatment failure may include  “inappropriate muscle targets and/or botulinum neurotoxin dosing, improper method of injections, subjective feeling of inefficacy, and the formation of neutralizing antibodies against the neurotoxin.”

The suggestions they make are educating doctors on correct muscle targets, addressing the resistance to botulinum neurotoxin and as discussed above, the development of dedicated rehabilitation programs, and addressing the psychological aspects of the disorder.

The different types of botulinum toxin, why one may be better than another.

In a December 2022 study from Japan (26) , doctors evaluated the effectiveness of botulinum toxin type B in 138 cervical dystonia patients who have received prior botulinum toxin type A therapy. In a one year follow up, patients showed notable improvement after upwards of six injections (average patient was 3.6 injections) within the one year follow period. More than half of the patients (57.25%) received four or more injections in the 1-year observation period.

  • A favorable response to treatment was seen over time in the majority of patients.
    • The main reason patients discontinued treatment was that the drug was considered ineffective at the first injection, rather than diminished efficacy after subsequent injections.
    • Only patients with good response remained in the latter half of the study. Among the patients who discontinued due to adverse effects, the main reason was thirst. It is known that botulinum toxin type B causes a higher frequency of dry mouth than type A.
  • The researchers concluded: “(This) study support(s) the efficacy of type B in clinical settings for managing the symptoms of cervical dystonia, including pain, even at low doses and independent of prior botulinum toxin type A resistance.”

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, (27) here is what they found as to the long-term effectiveness of Botox injections in the treatment of Cervical Dystonia.

  • 24 adult patients with idiopathic (it is not clear how the problem started) Cervical Dystonia was assessed three times over a treatment period of 12 weeks following a single treatment with botulinum toxin.
  • Disease symptoms significantly improved following botulinum toxin injections and deteriorated again at 12 weeks.
  • This improvement was not accompanied by:
    • improved postural control,
    • cervical sensorimotor control, and perception of visual verticality. (The involuntary movement continued).

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, (28they wrote:

  • Numerous studies have established botulinum toxin to be safe and effective for the treatment of cervical dystonia. Despite its well-documented efficacy, there has been growing awareness that a significant proportion of cervical dystonia patients discontinue therapy. The reasons for discontinuation are only partly understood.

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.

  • But, overall, approximately one-third of cervical dystonia patients discontinue botulinum toxin therapy.
  • The most common reason for discontinuing therapy is the lack of benefit, often described as primary or secondary non-response.
  • The apparent lack of response is only rarely related to true immune-mediated resistance to botulinum toxin. Other reasons for discontinuing include side effects, inconvenience, cost, or other reasons.

Part 5: Deep brain stimulation


Deep brain stimulation is a surgically planted device planted device that send electric impulses into the brain. It is used to treat Parkinson’s disease, essential tremor, Meige syndrome.

An October 2023 paper in the journal Toxins (29) suggests that deep brain stimulation may be used as a backup strategy when botulinum toxin fails. The researchers note that: “Overall, the level of evidence for deep brain stimulation therapy in dystonia is not high, but the available studies, combined with clinical experience, support the assumption that the treatment is effective.”

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

A March 2021 study in the journal Movement Disorders Clinical Practice (30) led 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 Botulinum toxin A (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 Botulinum toxin A (BoNT-A) , clinical improvement was seen in 5 (41%) after adjusting their dose and injection technique.


Part 6: Surgical Options


 

A May 2022 study in (31) The Egyptian Journal of Neurology, Psychiatry and Neurosurgery writes: “Cervical dystonia can be effectively treated surgically without major complications. Patients that are not responding to conservative medical treatment may be potential surgical candidates. . . surgical interventions can result in a long-term improvement in abnormal dystonic activity.

Moreover, patients with muscle contractures may not improve with botulinum toxin injection, but may benefit from surgery when denervation is combined with myotomy (muscle release or removal). Surgical modalities in terms of deep brain stimulation, unilateral globus pallidus internus pallidotomy (removal of a small portion of the brain where movement dysfunction is thought to come from), and selective peripheral nerve denervation(s) are applicable.

The doctors add: “The treatment plan and selection of the appropriate surgical option is a major challenge, and usually depends on several factors, including the age of the patient, clinical type of cervical dystonia, etiology of cervical dystonia, previous exposure to medications, previous trials of botulinum toxin injection, medical condition, prior surgery, cost, and patient’s preference, therefore therapy must be individualized. However, the prognostic factors determining favorable outcomes for which patient will respond better to a specific type of surgery have not been determined.”

Cervical Fusion Surgery

C5-c7 levels

In September 2023, doctors at Louisiana State University presented a case (32) of a 46-year-old female patient with cervical dystonia with concurrent cervical myelopathy. The doctors elected to implant deep brain stimulation prior to C5 to C7 anterior cervical discectomy and fusion (ACDF) to avoid the potential for dystonic movements to negatively impact cervical fusion.

The patient was followed up at three months post C5 to C7 anterior cervical discectomy and fusion (ACDF) and nine months post deep brain stimulation with complete control of tremor and no radiographic evidence of hardware loosening or malalignment.

Following up on this success, the doctors wrote: “There is a small but growing body of evidence that suggests the use of deep brain stimulation and surgical fixation of the spine may provide long-lasting symptom resolution for carefully selected patients.”

C1-c2 levels

In May 2020 surgeons in the Journal of Clinical Neuroscience (33) described successful treatment of atlantoaxial rotatory fixation (the C1 and or C2 have displaced and they are preventing each other from achieving proper rotation.)

  • A patient is a 50-year-old man who started having symptoms of torticollis. This lasted for 6 weeks before he sought medical care at the offices of the surgeons who reported this case in the literature.
  • One week prior, 5 weeks into the symptoms, the patient reported he had severe neck pain.
  • Based on the local and imaging findings, he was diagnosed with atlantoaxial rotatory fixation of fielding classification type I. (This is described as a simple rotatory displacement without anterior shift (not shifted forward). The transverse ligament is intact and the dens (the bony process at the rear of the C2) acts as the pivot point.
  • The atlantoaxial rotatory fixation and subluxation were not reduced by 3 weeks of Glisson traction.
  • Because of the failure of traction, the patient had a C1-C2 posterior fusion surgery 3 months after his initial visit.
  • Although CT findings just after surgery showed that the C1-2 facet subluxation was reduced, the complaint of torticollis was not improved, with scoliosis at the middle to lower cervical level because of left sternocleidomastoid hypertonia. (The muscle continued in spasm and continued to tilt the head).
  • Administration of diazepam was initiated 2 weeks after surgery and botulinum toxin injections to the left sternocleidomastoid were added 2 months after surgery under the neurological diagnosis of spastic torticollis.
  • As a result, the complaint of his torticollis was significantly improved 3 months after surgery. There were no relapses of the torticollis and complete fusion of the C1-C2 laminae was observed at the 2-year final follow-up.

This is a success story: Let’s recap

  • One day a 50-year-old man has torticollis. After 5 weeks neck pain becomes so severe he seeks medical treatment.
  • He is put into traction for three weeks, when this fails he is scheduled for surgery.
  • Three months of no treatments caused his situation to worsen
  • Finally, he gets the surgery
  • Two weeks after the surgery his torticollis symptoms were severe enough that opioids, diazepam, were prescribed.
  • Two months after the surgery, the torticollis symptoms remained. Botox was given.
  • Three months after the surgery the torticollis symptoms.

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.


Part 7: Cervical instability dystonia


It would make sense that a person with cervical instability is set up for cervical dystonia considering that: 

  • Their cervical muscles are activated to stabilize the spine.
  • Their nervous systems are “out of balance,” with the sympathetic nervous system on overdrive (hyperfunctioning) and the parasympathetic nervous system on underdrive (hypofunctioning).
  • Chronic pain itself often causes one to hold tension and stress in the neck, which in this case is already injured.
  • It affects the temporomandibular joint which is also implicated in the condition.
  • Cervical instability affects many cervical nerve levels as well as brainstem and spinal cord functioning.

If one compares acute-onset with delayed-onset post-traumatic cervical dystonia, acute-post-traumatic cervical dystonia is characterized by a markedly restricted range of neck motion, the absence of phasic involuntary movements, and poor response to botulinum toxin injection. Delayed-onset post-traumatic cervical dystonia is clinically indistinguishable from nontraumatic idiopathic cervical dystonia with its involuntary movements, sensory tics, and generally a good  response rate with botulinum toxin injection. Since the condition can come after a whiplash and the underlying diagnosis for chronic symptoms is cervical ligament injury, a better name for this condition would be cervical instability dystonia.

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

  • The patients sway because they have cervical instability causing disorientation.
  • If the patient can fix his/her cervical instability, as determined by the research above in the form of exercise to strengthen the neck, they won’t sway.
  • A problem of joint error re-positioning was discussed. The swaying and disorientation come from the patient’s inability to center (re-position after movement) his/her head properly on the neck.
  • Prolotherapy: Injection of simple dextrose into the soft tissue of the neck to help rebuild the cervical ligaments. Restored ligament strength helps prevent painful muscle spasms.

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

Prolotherapy is a nonsurgical regenerative injection technique that introduces small amounts of an irritant solution to the site of painful and degenerated tendon insertions (entheses), joints, ligaments, and in adjacent joint spaces during several treatment sessions to promote growth of normal cells and tissues. Irritant solutions most often contain dextrose (d-glucose), a natural form of glucose normally found in the body, but may also contain combinations of polidocanol, manganese, zinc, pumice, ozone, glycerin, or phenol.

The difference between Botox injections and Prolotherapy injections 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. Most patients require 3-6 visits spaced about one month apart.

The Prolotherapy research

In the medical journal The Open Orthopaedics Journal, (34) our research team provided clinical insights supported by research that:

  • The cervical neck ligaments are the main stabilizing structures of the cervical facet joints in the cervical spine and have been implicated as a major source of chronic neck pain.
  • Weakened damaged ligaments that have become “stretched out,” cannot provide structural support to the neck often reflects a state of instability in the cervical spine and is a symptom common to a number of conditions such as disc herniation, cervical spondylosis, whiplash injury, and whiplash associated disorder, postconcussion syndrome, vertebrobasilar insufficiency, and Barré-Liéou Syndrome.
  • In the upper cervical spine (C0-C2), this can cause symptoms such as nerve irritation and vertebrobasilar insufficiency with associated cervical vertigo, dizziness, tinnitusfacial pain, arm pain, and migraine headaches.
  • In the lower cervical spine (C3-C7), this can cause muscle spasms, crepitation, and/or paresthesia in addition to chronic neck pain. In either case, the presence of excessive motion between two adjacent cervical vertebrae and these associated symptoms is described as cervical instability.

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.

Cervical Realignment Therapy

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.

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, re-establish normal biomechanics and encourage restoration of lordosis.

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

Learning points from this video:

  • Cervical torticollis is a very common problem that we see in our office.
  • Patients complain of spasms of the trapezius and sternocleidomastoid muscles, and difficulty in moving their head a certain way.
  • After examination, we find that the cause of Cervical torticollis is upper cervical or cervical instability impairing the function of the spinal accessory nerve.
  • The spinal accessory nerve or cranial nerve 11 (CN XI) innervates (controls, helps function) the sternocleidomastoid muscle and the trapezius muscle.
  • The spinal accessory nerve runs into the carotid sheath (the connective tissue that wraps around and protects the vascular region of the neck), along with the glossopharyngeal nerve or cranial nerve 9 (CNIX) which controls the Stylopharyngeus muscle and swallowing mechanism, and it runs along with carotid artery.
  • When a person has cervical instability, there are changes in the cervical curve (lordosis) along with the excessive motion of the vertebrae that can and will stretch and compress the spinal accessory nerve. If the spinal accessory nerve is stretched, the nerve impulse to the sternocleidomastoid is disrupted and incorrect and confusing messages can send the muscle into spasm.
  • In our office, we utilize DMX or digital motion x-ray to document cervical spine instability.
  • In most cases of cervical torticollis, especially if cervical instability has not significantly progressed, we can stabilize the cervical spine with Prolotherapy injections, (see below) and get the muscles out of chronic spasm.

Part 8: 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

The caption of this image reads Patient during a dystonic storm. This patient (she) was found to have severe upper cervical instability which caused compression of her carotid artery leading to a myriad of dystonic storms. By stabilizing her upper cervical spine, Prolotherapy injections helped resolve her dystonic storms.

This patient is featured in the video below. In this video, Dr. Ross Hauser reviews this article on 4 patients with dystonic storms who were found to have intermittent cerebral ischemia by Transcranial Doppler testing. These patients had improvement after a series of Prolotherapy to help stabilize their posterior cervical spine ligaments. Below the video is summary learning points discussed.

A year ago we figured out a cause of dystonic storms. Dystonic storms are a life-threatening condition. A person loses all control of their body much like a seizure disorder.

In the patient featured (Jamie) in this video (and pictured above) we did a transcranial Doppler examination. (Transcranial doppler (TCD) has been called the stethoscope for the brain. It can track moment-to-moment changes in blood flow to the brain, allowing us to assess the effect of interventions, such as changes in neck positioning, on brain blood flow.)

At 1:00 of the video: Turning her head caused blood flow to stop for 8 seconds and ignite a dystonic storm

Basically when Jamie our patient was moving her head in a certain direction, suddenly she was thrown into a dystonic storm.

We felt that we had discovered a cause of dystonic storms and then we’re thinking this may be a cause of seizure disorder.

  • In this example – it can be suggested that seizure disorders can be caused by an interruption of blood flow to the brain caused by a cervical spine compression.
  • There are a lot of people with movement disorders, seizure disorders, dissociation disorders where they don’t feel like they’re in their body, or paroxysmal sympathetic hyperactivity activity where their heart is racing, all of all these things can be from upper cervical instability and one of the tests that we do in the office here is the transcranial Doppler exam where we shoot an ultrasound beam into the various blood vessels in a person’s brain and then we see what happens to the blood flow.

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. 

A patient case of Dystonic Storms

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

  • Jamie started having symptoms in 2011 following a history of oral and intravenous antibiotics for unknown respiratory problems.
  • She suddenly developed a problem with stuttering after being released from the hospital for respiratory problems.
  • One week after completing IV antibiotics, symptoms began to escalate:
    • She describes that her face started falling on one side
    • Then she started having seizures, but she was conscious during the seizures and aware.
    • Despite these painful seizures, Jamie was concerned about going back to the hospital because every time she was released, her symptoms got worse.
  • Two weeks after release from the hospital, Jamie was having about 20 seizure attacks a day, some lasting 20 minutes. It was thought she may have asthma and that these were asthma attacks. Later it was determined she did not have asthma.
  • She continued trying to manage the attacks.
  • A consultation with a neurologist gave her a diagnosis of generalized paroxysmal dystonia.
    • With this diagnosis came prescriptions for anti-Parkinson medications, anti-seizure medications, asthma medications (even though at this time asthma had basically been ruled out).
  • At this point, her body was moving all the time in spasms and involuntary motion. Her stuttering continued.
  • One treatment that she found helpful was B12 injections. Jamie tried these injections because the medications were not helping. As she responded positively to the B12, this provided a clue that her problems were structural problems. B12 injections can improve problems of the cranial nerves.
  • Jamie began researching treatments. This brought her to Caring Medical Ft. Myers Florida.
  • A DMX (Digital Motion X-ray) revealed significant cervical spine instability.
  • Jamie was deemed a good candidate for Prolotherapy injections (see below).
  • Jamie describes what happened after the first treatment. (This result may not be typical for everyone.)
    • Jamie would often sit outside with her son as long as she could before she recognized the possibility of an attack coming on. This would typically be 5 minutes. She waited for an attack and the attack did not happen when she thought it would. So she stayed outside longer and it was hot. Normally heat would trigger an attack. The attack did not come. She pushed it and began helping her son ride his bike without training wheels. Eventually, an attack came. Then it went a few weeks without one.
  • Jamie had a second Prolotherapy treatment.
    • Following this treatment, she had an attack but it was significantly less in strength than she had been used to.  She uses the word, “gentle.”
  • Jamie did 4 treatments at the time of this video
    • She has normal blood pressure
    • She has been exercising
    • She has not had an attack since the “gentle” attack after the 2nd treatment.
    • Her goal of treatment is to go surfing with her son.

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

Because the nervous system is involved, the unfortunate conclusion, as we have seen, most commonly drawn from the research is that tics, movement disorders, and dystonia are primarily nervous system issues. And they absolutely can be. However, often the nervous system issue is secondary to the primary injury or condition, which is the missing diagnosis: cervical instability. For head, neck, and facial movement disorders including tics, tremors of the eyes, mouth, neck or hands, and dystonias, the underlying missing diagnosis or root cause for many of these patients is cervical instability, especially in the upper cervical region.

In our experience, we believe many who suffer from cervical dystonia and spasmodic torticollis suffer from a rotatory subluxation of C1-C2. The mechanism of injury is acute axial rotation, resulting in disruption of the articular capsules of the facet joints articulating with the lateral masses in the neck. The injury can occur in the absence of fracture and is not generally associated with a neurologic deficit. When there is a right side anterior rotary subluxation, there is lateral bending of the head and neck to the right and rotation of the head to the left. The head is tilted toward the side of the subluxation or dislocation, while it is rotated away from it. Initially, manual chiropractic care to correct the subluxation can be done, but often because of lack of diagnosis or the severity of the injury, Prolotherapy can be an effective treatment. If the muscle tightness is severe, botulinum toxin injection to temporarily weaken the muscle, and sometimes bracing, are done in addition to the Prolotherapy.

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.

Reach out to the Hauser Neck Center Patient Team here

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This article was updated January 29, 2024

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