Ep 175 – Spasmodic Torticollis: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

0:00:00.0 Ruth Werner: Ruth Werner'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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0:01:14.0 RW: 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 Werner, 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.

0:02:01.6 RW: For this episode, I have a generous listener who did most of my work for me, and she has given me permission to recognize her by name. A massage therapist who is also an occupational therapist, Stepha Siyanda sent this to me, which I have edited just a bit. She begins, I have a client who was diagnosed with spasmodic torticollis. As a part of her treatment, a doctor performed Botox to the posterior cervical spine. Okay, this is Ruth, and I'm gonna stop this right here because I wanna talk a little bit about spasmodic torticollis and about Botox, and then we'll pick up Stepha's description of what happened next. Spasmodic torticollis is a type of dystonia, a shockingly complex array of neuromuscular disorders, but this one focuses on the neck. Other forms of dystonia focus on the eyelids, that's called Blepharospasm, or the lower jaw muscles or the vocal cords, or lots of other places in the body, or combinations of places. There's lots of different types of dystonia, but spasmodic torticollis, which is also called cervical dystonia is the most common form, and it involves sustained unilateral involuntary contractions of the neck rotators, especially the sternocleidomastoid. Dystonias in general are caused by problems with the voluntary movement centers in the brain, it seems to begin in the basal ganglia, and it involves several different neurotransmitters, including acetylcholine, dopamine, gamma aminobutyric acid and serotonin.

0:03:41.9 RW: People who are affected with dystonia experience prolonged signals to contract in the affected muscles, possibly with uncontrolled flailing and writhing in the neck. This looks like the head pulls strongly and painfully to one side or sometimes with tremor, but it happens all the time. I've put a couple of links to YouTube videos of people with cervical dystonia in our show notes, but I wanna offer these with a caveat. A lot of the videos that we see in public places like YouTube are put up by doctors or in this situation by some specialized dentists or physical therapists or other specialists who are demonstrating that their particular kind of work or strategies to treat it are really effective. And I'm not saying that the interventions don't work for these patients, but I wanna make it clear, I am not promoting any special approach to this very challenging problem, and when you watch things like this, it's important to bear in mind that the people sharing these videos are doing that with a very specific kind of agenda.

0:04:52.5 RW: So if you're interested, take a look at these videos just to get a sense of what having dystonia is, and to think about how you might approach this challenge if you have a client with it. There are a number of ways to treat spasmodic torticollis, starting with physical therapy and stretching, going on to medications that affect neurotransmitters and muscle tone. If these don't work, then injections of botulinum toxin, Botox might be tried, and I will come back to that in a minute. If none of these things brings any relief then more invasive options include deep brain stimulation or surgery to disrupt portions of the basal ganglia or to interrupt nerve transmission to the muscles or in the spinal cord. Obviously we'd like to avoid this, if that's at all possible. These are pretty extreme interventions, and the research generally supports Botox, especially for neck problems as a useful approach for most people who have spasmodic torticollis.

0:05:52.7 RW: So let's talk about Botox. It's not just for wrinkles, Botulinum toxin has a whole slew of therapeutic uses, but it does not come without risk of adverse reactions. The way it works is that the toxin from the botulism bacteria damages the neuromuscular junctions wherever it is injected, it prevents the passage of acetylcholine from the motor neuron to the motor end-plate of the muscle cell, and so that muscle cell just can't contract. The neuromuscular junctions eventually repair and grow back, but it takes a while, and that's why a typical dose of Botox lasts for about three to four months. When a person gets a Botox injection into facial muscles to prevent or ease wrinkles, this works because the muscles that make those crows feet or the forehead lines, they can't contract, so those lines fade, but when this is done to larger muscles that move body parts around, it limits cramping and spasm, and that's great, but it can also result in serious weakness because those muscles now can't contract.

0:07:01.2 RW: I once interviewed a gentleman who had a neuromuscular disease that caused painful spasms in his legs, and he occasionally got Botox injections which eased the spasms, but it made his legs so weak that he couldn't walk, so it was a hard trade-off between these two problems. The general guideline for massage therapy when a person has received therapeutic as opposed to cosmetic Botox, is to avoid the injection site for two or three days, so we don't alter the uptake or the action of this medication. This intervention works for a lot of people with spasmodic torticollis, but not all of them. Listen on for more. Stepha tells us, after Botox treatment, the client experienced dropped head. By the time I met her, she had to hyper-extend her trunk and anteriorly tilt her pelvis just to maintain eye contact, and that's the position she used at work because she uses a computer as part of her occupation, her chin was nearly resting on her sternum and her right ear and jaw were resting on her clavicle.

0:08:09.4 RW: Okay, this is Ruth again. Yikes, that sounds really hard. Try that for a minute, just let go of muscle tension in your posterior neck enough so that your chin rests on your sternum and your right ear and jaw are approaching your clavicle, just hold that for a moment, take a few breaths, feel how the muscles in your upper back and shoulders are starting to react. Okay. Let's come back to normal. So now what do we do? Well, here is what Stepha tells us. We addressed the spasms and trigger points in her mid-back related to hyper-extending her spine and anteriorly tilting her pelvis. We addressed the neck after those muscles were lengthened and loosened. The anterior neck and brachial plexus seemed to be the most problematic areas. She said the deep work really relieved her pain, the trigger point release techniques instantly relieved her active referral pain and those results could last for about two weeks. Active Release Technique ART, active isolated stretching AIS, Proprioceptive Neuromuscular Facilitation PNF, all of these work amazingly well, for spasticity, as well as pin and stretch.

0:09:32.0 RW: I often have to use techniques and pressure that I would only recommend for an experienced practitioner. I have extensive experience and training for hospital-based massage therapy and a Master's of Science in Occupational Therapy, and I treat cerebral palsy patients and stroke patients in a similar way if spasticity is present. I take the joint to the end feel, but the spasticity and the muscle intensely resist that force or position. Getting the muscles to lengthen and loosen before attempting range of motion allows the client to be more comfortable and makes it easier to assess that joint and whether it was really at the end feel. Both the client and I noticed that her range of motion would increase as I was providing this kind of treatment. With trigger point release, the muscles lengthened and loosened and then I could perform the ART and the PNF, AIS, and pin and stretch. Before the trigger point release, I'd not be able to move the joint at all.

0:10:31.7 RW: The results showed increased range of motion, decreased pain and stiffness, the sternocleidomastoid and anterior scalings were the muscles that resisted range of motion pressure and all stimuli except for heat. It took three months for the client's head to return to an upright position and the neck to return to midline. However, a head tilt of 30 degrees was still there, and after years of seeing this patient monthly, the best we improved the head tilt to was 15 degrees. We did have a setback when the doctor wanted to perform Botox a second time for the referral pain, that was about three months after we got her head upright again. The client said she would not consent as she was confident that the Botox caused her head drop, the doctor assured her this would not happen again, Botox was performed a second time, head drop was immediately observed and it took another three months to get the head into an upright position again. Oh, that's hard to hear. Right, so there's a lot more to say about spasticity, that's muscle tightness brought about by central nervous system signaling, and I would love to dedicate an I Have a Client Who to that topic, and I'm not gonna second guess this doctor with the Botox except to suggest that it seems clear this was not a great strategy for this client, at least not in the doses that she was receiving.

0:11:57.2 RW: Stepha provided an outline of her strategies and the results that she got with emphasis on the value of long experience and advanced education. And do you know what we have here? We have all the scaffolding on which to build a good case report. There's very little in the published academic literature about massage therapy for dystonia, but clearly we have good work to do for clients who live with this and what is a case report, but a formalized version of a good I Have a Client Who story. I hope that Stepha and people like you who are doing good work and getting great results for clients who may not have a lot of other options, we'll step up to that case report, call to action, and I am standing by to help.

0:12:46.6 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, I have a client who, all one word, all lowercase, at A-B-M-P dot com. I can't wait to see what you send me, and I'll see you next time.