Ep 143 – Cervical Dystonia: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

0:00:00.0 Speaker 1: Ruth Warner's best-selling book, A Massage Therapist's Guide to Pathology, is a highly regarded comprehensive resource that sets the standard for pathology education. Written for massage therapy students and practitioners, this ground-breaking resource serves up a comprehensive review of the pathophysiology, signs, symptoms, and treatment of more than 500 diseases and disorders. Learn more at booksofdiscovery.com.

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0:01:15.5 Ruth Werner: Hi and welcome to, "I Have a Client Who... " Pathology conversations with Ruth Werner, the podcast where I will discuss your real-life stories about clients with conditions that are perplexing or confusing. I'm Ruth Warner, author of A Massage Therapist's Guide to Pathology. And I have spent decades studying, writing about, and teaching about where massage therapy intersects with diseases and conditions that might limit our client's health. We almost always have something good to offer, even with our most challenged clients, but we need to figure out a way to do that safely, effectively, and within our scope of practice. And sometimes, as we have all learned, that is harder than it looks. Today's story comes from two massage therapists who very kindly gave me permission to use their Facebook conversation for this podcast. I had put out a request for topics to consider for my massage and bodywork column, and here's what happened.

0:02:17.7 RW: Me, "Hey, massage therapists. What pathologies would you like more information about?" Massage Therapist One, "Cervical dystonia." Massage Therapist Two, "Yes. This is new to me, and I have a client I'm trying to help. What's been your experience, Massage Therapist One?" Massage Therapist One, "Short version, massage cannot cure it. It's neurological, but it certainly helps them sleep through the night and feel more energy due to increased sleep." Massage Therapist Two, "The issue I've been researching specifically or trying to, is when the treatment seems to cause the spasms to increase. It doesn't necessarily feel bad to my client, she says it feels like the muscle's trying to release. It's just confusing to me. And most of all, I don't want to make it worse."

0:03:04.5 RW: That is a great observation and description. And we will return to Massage Therapist One's terrific response to this question in a bit. But first, let's talk about cervical dystonia. Dystonia, literally bad muscle tone is an umbrella term for a variety of problems. Cervical dystonia obviously involves the neck muscles, but its effects can extend to the head in the form of headaches and the shoulders and the back as well. Among movement disorders, dystonia has a unique profile. It involves repetitive, involuntary and sometimes sustained, for hours, contractions of skeletal muscles, but these contractions are typically not on a single plane, like we see with tremor or Parkinson's disease where one joint like the wrist, rhythmically oscillates back and forth.

0:04:02.1 RW: And the contractions with dystonia are usually limited to specific locations, which is not true of the involuntary spasms we sometimes see with Huntington's disease, which is marked by jerky unpredictable movements that can affect the whole body. And another movement disorder is called athetosis and we see this sometimes with people who have cerebral palsy. This is a slow, twisting, continuing squirmy kind of movement, and most dystonia doesn't look like that either. There are many types of dystonia and many ways to classify them, and that makes this condition a little confusing. In my book, I list five main dystonia categories with 13 different subtypes, but cervical dystonia, which can also be called spasmodic torticollis, is the most common form. Spasmodic because it involves spasms and tortis means twisted and collis is neck. So we have with spasmodic torticollis, twisted neck because of spasms. When this situation is classical cervical dystonia or spasmodic torticollis, what's happening is indeed neurological, but sometimes that's not really what's going on.

0:05:20.2 RW: And we'll get back to that in a second. True cervical dystonia probably starts as a problem in the basal ganglia, clusters of cells deep in the brain that help to control voluntary movement. Because of an inability to process certain neurotransmitters, the person has these bursts of electrical activity that cause uncontrolled long-term contractions, sometimes with flailing and twisting. This kind of spasmodic torticollis can come about because of genetics or reactions to medications or can be connected to some underlying disorders. It happens in all ages. Women are diagnosed more often than men. The main symptom is unilateral, involuntary contractions of neck rotators, especially the sternocleidomastoid. Lots of people with spasmodic torticollis also have other forms of dystonia. Spasms in the facial muscles that go along with the neck muscles that happens a lot. There's a type of dystonia called blepharospasm and if I tell you that bleph means eyelid, well, you can figure out what that is. An uncontrolled spasmodic blinking with cervical dystonia. That's a pretty common combination.

0:06:37.1 RW: I found some videos of interviews of people with cervical dystonia, I'll provide a link if you're interested. I was especially moved by a young gentleman who wanted to have better freedom of movement in his neck and he also complained of "Sharp icepick in my back pain" on the side where his contractions were worst. Clearly this is a secondary protective response. And he also talked about not being able to sleep well because his symptoms were worse when he laid down. I'm not even in massage practice and I longed to get my hands on this person's shoulders. He really needs a massage. Sometimes unilateral spasms in the neck are not a neurological issue. There are a handful of other problems that can cause this symptom and some of these are relevant for massage.

0:07:28.3 RW: So let's take a quick look. There's a thing called congenital torticollis. It's a genetic anomaly in which a baby is born with only one sternocleidomastoid muscle. It's usually addressed in young childhood through physical therapy and exercises to train other rotators to make appropriate accommodation. Infant torticollis develops sometimes in late pregnancy, especially when the baby's head is twisted to one side in the womb in such a way that the sternocleidomastoid becomes weak. The cranial bones may also be distorted. It's usually corrected with exercise and a special helmet that is worn during infancy. And there's another thing that we see in adults that is sometimes called wryneck, that's W-R-Y. Wryneck or simply stiff neck. And this can reflect a musculoskeletal issue with neck ligaments or with alignment in the cervical vertebrae. Now, most of us have probably experienced this or seen this as short-term cases, this can be the result of sleeping funny or some odd thing that happens with our neck. But longer-term issues might be related to more serious neck injuries or other kinds of trauma. And in quite rare cases, torticollis can be an early indicator of something much more serious, a tumor in the brain or the neck, for instance, that might affect motor nerves, or a bad bone infection or some other problem.

0:08:58.2 RW: One interesting twist in this situation... Oh, twist, get it, is the possibility that some patients with pain and unilateral spasm of the neck may have been affected by a history of dental or orthodontic work that ended up causing nerve irritation or TMJ dysfunction. That opened some really interesting roots of investigation for massage therapists who are skilled with TMJ work. If the client is interested and willing, and of course, if your local legislation allows it, it's worth finding out if a client with cervical dystonia has been officially diagnosed, or if they just did their own Internet sleuthing and came up with the label themselves because this delineation could make a difference in whether or not massage therapy can be useful. A person with diagnosed neurological cervical dystonia has a number of treatment options including stretching and physical therapy and exercise. And where those are safe, guess what else is safe?

0:10:00.5 RW: That would be massage. They might also try a variety of medications and injections to alter the uptake of neurotransmitters, and this might include Botox that will interrupt spasms in the affected muscles. Other medications like benzodiazepine or baclofen may make the nerves less sensitive and reduce spasms and spasticity. And interestingly, some people learn how to interrupt their spasms by touching some other part of their body. This is called a sensory trick and it seems to help in some cases, which also raises some interesting options about massage, doesn't it?

0:10:38.2 RW: Chiropractic and acupuncture appear to be helpful for some patients, at least in the short run. The research on massage for torticollis is focused mainly on children. A variety of systematic reviews find that massage is helpful for children with infant torticollis but the only thing on massage for adult cervical dystonia is a paper that recommends facial massage as one of those sensory tricks to interrupt spasms. There was a really nice case report published in the International Journal of Therapeutic Massage and Body Work in 2020 about massage for a woman with a type of dystonia, but it was not specifically torticollis. She found that the massage helped her with several issues including pain, spasm and frequency and some other improvements, and of course, there will be a link in our show notes.

0:11:30.4 RW: So where does all that leave us with today's contributors? Massage Therapist Two says, "The treatment seems to cause these spasms to increase. It doesn't necessarily feel bad to my client. She says it feels like the muscle's trying to release. It's just confusing to me. And most of all, I don't wanna make it worse." And I just wanna say I think that's great, that even though touching it might trigger a spasm, it doesn't appear to hurt. And so at least working in this area is safe and possible, but what do we do with this kind of reaction? Massage Therapist One has this advice based on their experience with clients who have cervical dystonia. Massage Therapist One says, "Whenever it spasms like that, I lighten pressure and apply sustained, broad, light pressure with just a little traction until they stop. Kind of like a parent reassuring their offspring, 'It's okay. See, there's nothing to worry about. You're perfectly fine.' Now, say that in a loving grandparent voice, and you'll get the idea."

0:12:39.1 RW: I love this image and it plays on the ability of gentle, welcomed, educated touch as a way to help the body and especially the nervous system organize incoming information and feel less threatened by it. Massage Therapist One goes on to say this, "Everybody's different. My lady stated that they were afraid it was going to hurt and that thought process manifested physically. It caused muscles to spasm more than they already were to protect themselves from perceived potential damage and pain." You'll see that if you look at videos of people who have dystonia as well. This says a lot about how hard human bodies work to protect ourselves from real or potential threats and pain. As massage therapists, we can provide that reassuring, soothing, confident touch that helps our clients remember and relearn all the things they can do without pain. Massage therapy will not fix true cervical dystonia but we could help with fear and anxiety, we can promote less tension in all those protective muscles that then cause headaches and neck and shoulder and back pain. And we can at least temporarily improve these clients' quality of life.

0:13:57.8 RW: I do have a couple of caveats, as always. If clients use medications to alter nervous system activity or muscle tone, then special conservatism is called for. If your client's had a recent Botox injection, it's best not to deeply manipulate that area because you don't want to change the rate of uptake. I recommend that if you have a client with this condition that you reach out to their doctors just to let them know what you're doing and offer, with your client's permission, to share what you find out. This is an excellent team project and if you have some success you can find yourself with more clients who have cervical dystonia than you can handle, and we just love those success problems.

0:14:40.7 RW: Hey everybody, thanks for listening to, "I Have a Client Who... " Pathology Conversations with Ruth Werner. Remember, you can send me your "I Have a Client Who... " Stories to ihaveaclientwho@abmp.com. That's ihaveaclientwho, all one word, all lower case, @abmp.com. I can't wait to see what you send me and I'll see you next time.