Cervical dystonia and spasmodic torticollis treatment

Ross Hauser, MD

Cervical dystonia and spasmodic torticollis treatment

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

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

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

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.

Then your story may have taken a turn like this:

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

-or-

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

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

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

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

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. 

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. 

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

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

Characteristic of a Cervical dystonia patient include:

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

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

When a patient who is suffering from dystonia comes into our clinics looking for help and some answers it is because their condition has worsened. They have rapid blinking of the eyes, may have become light-sensitive, and may have developed head tremors. The failed efforts to treat this worsening condition is 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 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 have included Duopa®, Rytary®, Cogentin®, Austedo®, Xenazine®, Valium®, Lioresal®, Gablofen® among others. If you have been prescribed these medications you know that in one way or another they act upon neurotransmitters (such as dopamine) to reduce signals to the brain calling for spasms. You also know that they may make you drowsy, possibly incoherent depressed, anxiety-ridden, and nervous.

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

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

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

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

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

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

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

Not the first time you were told to relax

You have likely been told that relaxation and medication would be helpful to you. But how can these things be helpful if the medications you are taking may be causing the symptoms you are trying to manage. In the above study, the very first thing that the doctors noted was a reduction in depression. The medications above, 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 psychotherapists and they are discussing relaxation, physical therapy, depression, and a comprehensive program for the management of dystonia.

This is what these researchers were looking at:

The study results:

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

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

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

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

Cervical dystonia and substance abuse

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

C1-C2 Surgery and Botox

In May 2020 surgeons in the Journal of Clinical Neuroscience (5) described a successful treatment of atlantoaxial rotatory fixation (the C1 and or C2 have displaced and they are preventing each other from achieving proper rotation.)

This is a success story: Let;’s recap

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

A patient case of Dystonic Storms

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

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

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


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

A study from the University of Antwerp published in the journal Experimental Brain Research (6looked at the Cervical dystonia patient’s inability to have posture control. Some patients, perhaps including yourself, with Cervical dystonia, sway too much when they are standing and they sway too much when they are sitting. Swaying is a normal balance mechanism when we stand and when we sit. Excessive sway is caused by impaired cervical sensorimotor control (sense of position and place). The question is, what causes you to sway too much? Is it a neurological problem? Is it a muscular problem?

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

The same research team, concurrently published data in the journal Brain and Behavior that cervical sensorimotor control can be trained through exercise and this might be a potential treatment option for therapy, adjuvant to botulinum toxin injections. (see below on Botox®). (7) Botulism toxin injected into the tight muscles, paralyzes and relaxes them and allows the head to straighten for a period of time. Although this may provide temporary pain relief, it does not get at the root of the problem – weak and damaged cervical ligaments, which are due either to an injury or another cause.

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

Learning points from this video:


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

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

The trail  gets hotter – Botox® Injections and Prolotherapy Injections

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

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

It is clear that the main attribute of Botox injections is the reduction of pain through the management of painful muscle 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 (8)

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

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

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

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

Publishing their findings in the medical journal Toxicon: official journal of the International Society on Toxinology, (10they wrote:

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

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

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

The difference between Botox injections and Prolotherapy is that Prolotherapy addresses why 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.

Another patient with Cervical dystonia/Spastic torticollis

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

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

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

The patient’s story continues with Caring Cervical Realignment Therapy

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

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

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

The research

In the medical journal The Open Orthopaedics Journal, (11) our research team provided clinical insights supported by research that:

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

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

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 Akiyama Y, Takahashi H, Saito J, et al. Surgical treatment for atlantoaxial rotatory fixation in an adult with spastic torticollis: A case report. J Clin Neurosci. 2020;75:225‐228. doi:10.1016/j.jocn.2020.03.017 [Google Scholar]
6 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]
7 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]
8 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]
9 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.
10 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]
11 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]

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