Cervical dystonia and spasmodic torticollis treatment
Ross Hauser, MD., Caring Medical Regenerative Medicine Clinics, Fort Myers, Florida
Danielle R. Steilen-Matias, MMS, PA-C., Caring Medical Regenerative Medicine Clinics, Oak Park, Illinois
David N. Woznica, MD., Caring Medical Regenerative Medicine Clinics, Oak Park, Illinois
Cervical dystonia and Spastic torticollis is not a problem of Valium® deficiency
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 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.
Your doctor tells you that he/she suspects Cervical dystonia also called Spastic Torticollis or Cervical Torticollis . 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.
At this point you maybe wondering, “why did it take so long for someone to figure out what is wrong with me?”
At this point you maybe 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:
- 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
Characteristic 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
- 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.”
This may explain why you are on a lot of medicine that does not help
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 efforts to treat this worsening condition is manifested with a long medical history in the form of the remaining pills in their prescription bottles or blister packs. They will tell us about trial and error regiments 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 include 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.
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 release from the hospital for the 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 everytime 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).
- A 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 a structural problem. 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 is was significantly less in strength as she had been use 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.
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.”
- 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
- 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.
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, some of them 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 psychotherapist and they are discussing relaxation, physical therapy, depression and a comprehensive program for 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.
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 anxiety, depression and other psychiatric problems. Caution, they wrote, should be exercised when prescribing drugs with potential for abuse in these patients.
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 (5) looked 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.
- Center of Pressure displacements were doubled in patients without head tremors and tripled in patients with a dystonic head tremor.
- 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 is a sway 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®). (6) 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:
- Cervical torticollis is a very common problem that we see in our office.
- Patients complain of spasm of the trapezius muscle, the sternocleidomastoid muscle 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 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.
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.
- In the second study, the 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.
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.
- 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.
- Prolotherapy: Injection of simple dextrose into the soft tissue of the neck to help rebuild the cervical ligaments. Restored ligament strength help prevent pain 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 spasm. 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 (7)
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, usefulness of guidance techniques for injection, the impact on quality of life, or the duration of treatment effect.”
Botox 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, (8) 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 were 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, (9) they 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.
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 the 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.
A 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 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, M.D. 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 connect vertebrae, and re-establish normal biomechanics and encourage restoration of lordosis.
In the medical journal The Open orthopaedics journal, (10) 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, tinnitus, facial 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.
If this article helped you to understand problems related to Cervical dystonia | Spastic Torticollis, you can get help and information from our Caring Medical Staff.
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]
3 Jacob A, Kaelin D, Roach A, Ziegler C, LaFaver K. Motor Retraining (MoRe) for Functional Movement Disorders: Outcomes From a 1-Week Multidisciplinary Rehabilitation Program. PM&R. 2018 May 18. [Google Scholar]
4 Mahajan A, Jankovic J, Marsh L, Patel A, Jinnah HA, Comella C, Barbano R, Perlmutter J, Patel N. Cervical dystonia and substance abuse. Journal of neurology. 2018 Apr 1:1-6. [Google Scholar]
5 De Pauw J, Mercelis R, Hallemans A, Van Gils G, Truijen S, Cras P, De Hertogh W. Postural control and the relation with cervical sensorimotor control in patients with idiopathic adult-onset cervical dystonia. Experimental Brain Research. 2018 Jan 16:1-9. [Google Scholar]
6 De Pauw J, Mercelis R, Hallemans A, Michiels S, Truijen S, Cras P, De Hertogh W. Cervical sensorimotor control in idiopathic cervical dystonia: A cross‐sectional study. Brain and behavior. 2017 Sep 1;7(9). [Google Scholar]
7 Castelão M, Marques RE, Duarte GS, Rodrigues FB, Ferreira J, Sampaio C, Moore AP, Costa J. Botulinum toxin type A therapy for cervical dystonia. The Cochrane Library. 2017. [Google Scholar]
8 De Pauw J, Cras P, Truijen S, Mercelis R, Michiels S, Saeys W, Vereeck L, Hallemans A, De Hertogh W. The effect of a single botulinum toxin treatment on somatosensory processing in idiopathic isolated cervical dystonia: an observational study. Journal of Neurology. 2018:1-2.
9 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]
10 Steilen D, Hauser R, Woldin B, Sawyer S. Chronic neck pain: making the connection between capsular ligament laxity and cervical instability. Open Orthop J. 2014;8:326-45. Published 2014 Oct 1. doi:10.2174/1874325001408010326 [Google Scholar]