Ep 280 – Dystonia: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

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0:00:41.7 Ruth Werner: Hey, I have a client who listeners, did you know I have a growing library of NCB approved one-hour, online, self-paced continuing education courses that you can do any time, anywhere? Well, now you know. Current classes include, what's next? COVID-19 updates for message therapists and a massage therapists introduction to pharmacology part one, and brand new, a massage therapist's introduction to pharmacology part two. Classes are $20 each and they confer one hour of continuing education credit. Wanna know more? Visit my website at ruthwerner.com and check it out. Be sure to sign up for my mailing list so you'll never miss a new class. 

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0:01:36.0 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. Today's episode is about a client with a very complex condition called dystonia. This is a reflection of something going on in the central nervous system, so the possibility that massage can have a profound long-term effect on it is probably pretty low. Plus, this client uses some medications that might require some adjustments on our part. Sounds hard. But here's the good news, there are some ways we can probably be helpful. 

0:02:51.4 RW: And our story goes like this. "Hi Ruth. I've been working with a client who has dystonia that affects her whole body. It started with a motor vehicle accident over 10 years ago. She has regular Botox injections and has a baclofen pump. Is there anyway I can help her? Well, I'm so glad you asked because maybe yes, but that depends on her goals. But we do have some precedents which I will be delighted to share. First, let's talk about dystonia, literally problems with muscle tone. Dystonia is a neurological issue, it's reflected in muscles. It causes repetitive, involuntary and sometimes sustained and painful cramps. It comes in about 31 different flavors. Actually, I think the real number is in the 50s, and it ranges from torticollis, which involves painful neck spasms to vocal dysphonia, which affects the sound of a person's voice, to blepharospasm, which is a teak in which a person rapidly and continually and uncontrollably blinks, sometimes to the point of functional blindness. To describe typical dystonia, I'm going to just cut to the chase and quote from my book. Dystonia appears to be linked to problems with the basal ganglia. In many cases, it appears to involve an inability to process certain neurotransmitters, including dopamine, GABA, serotonin and acetylcholine, and the result is prolonged bursts of electrical activity in the affected muscles with uncontrolled long-term contractions or flailing or writhing. 

0:04:29.7 RW: This distinguishes dystonia from other movement disorders like Parkinson's disease or tremor, which cause rhythmic oscillating shaking on one plane of movemen. Causes of dystonia vary. Genetic predisposition, underlying neurological disorders and reactions to medications are frequent triggers. It can also be a sign of other neurological diseases such as cerebral palsy and Huntington's disease, but these situations have a different pathophysiology. 

0:04:58.6 RW: Okay, this client's story suggests that she developed it after a motor vehicle accident. Is that even possible? Well, yes, I looked up dystonia related to trauma and it is an occasional consequence of head injury or even peripheral injury. For instance, it is possible to develop chronic uncontrolled spasms of the foot and lower leg after an ankle injury. This is new to me, and it suggests some big reactions in the central nervous system to a peripheral nervous system injury. I'm willing to bet that this client's dystonia is related to a head injury since it is body-wide. And that means she probably has had a traumatic brain injury, and that adds layers and layers of challenge to her life for sure. So someone please send me an "I Have a Client Who... " story about a client with a head injury, that's such an important topic and I would love to have a prompt about that. We know that this client is treating her dystonia with Botox injections and with baclofen. So let's talk about those interventions. 

0:06:03.9 RW: You may already be aware that Botox is derived from the toxin that is produced by a bacterium. This particular pathogen called Clostridium botulinum has historically been associated with a type of poisoning that comes from food that hasn't been properly canned or fermented or preserved. 

0:06:23.5 RW: We usually see this as a problem with home preparation rather than in store bought food, but it can happen there, too. Botulinum toxin works by attacking motor neurons, specifically at the motor end plates where the neurons secrete acetylcholine, which stimulates the targeted muscle cells to shorten. Without acetylcholine, the nearby muscle cells cannot initiate a contraction. So if you are a habitual eyebrow furrower like me, a Botox injection into your corrugator supercilii will make it so you literally cannot contract those muscles and your forehead looks smoother, so they tell me. Frankly, I've been doing this so long that I'm skeptical it would make a big difference for me. But in this client's case, we see the use of Botox for therapeutic rather than cosmetic outcomes. People with various forms of dystonia may use Botox to reduce or prevent the painful spasms they experience. If this interests to you, I recommend that you spend a little time on YouTube and do a search for Botox and dystonia. There are dozens of videos showing the use of Botox with a variety of patients, often with dramatic results. It's really pretty miraculous. Botox can be used for other purposes as well, migraines, hyperhidrosis, that's too much sweating, and other conditions that alter motor function. It's used for some patients with multiple sclerosis or Charcot-Marie-Tooth disease and other neurological situations. 

0:07:55.6 RW: And it's great to reduce those painful spasms, but the trade-off is that it makes those targeted muscles extremely weak. And that's a rabbit hole for a different day, so please just keep those "I Have a Client Who... " stories coming. The good news, bad news, part of Botox treatments is that the carefully dosed injections don't permanently damage neurons. The acetylcholine producing structures in the motor neurons grow back, so Botox treatments need to be repeated, sometimes every couple of months, sometimes every four to six months, it varies on the person and the location of use. I've had questions about massage and Botox injections before. Should we rub in that area? To my knowledge, this question has not been studied in a clinical setting, but conversations with doctors suggest that, no, we should not try to manipulate the area of an injection for at least several hours or even a couple of days afterwards. We don't want to alter the speed of uptake or to promote the medication moving away from the correct location. I've seen advice about massage and cosmetic Botox, advocating delays of anywhere from six hours to three days. So until we know better, I suggest that we call these sites temporary local contraindications. How long is temporary? What a great question to ask the client to ask their doctor. For me, I probably feel safe doing massage at two to three days and onward, depending on how the client feels about it. 

0:09:25.4 RW: If the target muscle contractions were painful, then stopping those contractions may result in less pain. But that doesn't mean Botox is meant to be a pain reliever, it does not affect the action of nociceptors or other sensory neurons at all. 

0:09:39.8 RW: But what about baclofen? Baclofen is a muscle relaxant. It acts on the spinal cord to suppress hyper-reactive reflexes and to lower muscle tone. Baclofen is usually administered orally, but if this doesn't work, then an intra-fecal pump could be implanted, which turns out to be the case for the client that we're talking about. The pump is pretty small. It's a disc that is embedded under the skin of the side of the abdomen, just above the iliac crest. It has a battery and a reservoir for medication and a tiny computer processor that can be programmed from the outside. Then there's a catheter under the skin that carries that medication to the correct level of the spinal cord. The reservoir is refilled when it's needed, but when the battery runs down after five to seven years, then the whole pump needs to be replaced. Fortunately, the catheter can stay where it is. I couldn't find a Creative Commons image of a baclofen pump to share with you, but I will put a link to a good picture in the show notes. Baclofen does not come without side effects. People who use it may experience dizziness, weakness. We saw that with Botox, too. 

0:10:52.9 RW: Also confusion, headache, nausea, constipation, difficulty falling asleep or staying asleep, and of course, tiredness. That seems like a lot to be dealing with. And like Botox, baclofen has some specific cautions for massage therapy. It's a powerful muscle relaxant, so if a client uses baclofen, we need to proceed with some caution. Again, we don't have specific guidelines about best practices, but we can infer that this person's ability to manage muscle tone and stretch are impaired, and this means that vigorous stretching needs to be avoided. And just like Botox, baclofen is not specifically a pain reliever, but its actions may reduce pain by reducing painful muscle spasms. Okay, so how can we use all this information about dystonia and Botox and baclofen to think about massage for this client? Well, here's another little bit from my book that might spark a few ideas. The primary symptom of dystonia is involuntary contraction of some area of the body. Contractions may be quick or sustained, and they often involve multi-plane movement and twisting. 

0:12:07.4 RW: Stress and fatigue appear to exacerbate symptoms. Contractions are often related to specific tasks and will disappear when other tasks that use the same muscles are substituted, like walking backward instead of forward, for instance. Many patients with dystonia develop a habit of repeatedly touching the affected area, which serves to reduce local contraction. And this pattern is called geste antagoniste. 

0:12:34.5 RW: Dystonic contractions might not be painful, but they can lead to painful consequences. Headaches can result from the spasmodic torticollis or facial contractions. Muscle irritation and arthritis might develop in areas where contractions are continually sustained, eventually the muscle fibers may shrink and connective tissue sheaths around them thicken into a permanent contracture. So dystonia can be painful or non-painful. It can have secondary effects on the musculoskeletal system, patients can be taught some coping strategies like geste antagoniste or going about certain activities in new and different ways, and all those symptoms are exacerbated by stress and fatigue. Can you see any openings here where massage therapy might be helpful? If this client is willing and depending on her goals for the session, it would be interesting to try some gentle rocking work just to try to lower whatever muscle tone can be affected. No big stretches are appropriate because of the muscle relaxants, as we've said, but incorporating some pain-free movement and maybe helping her to discover new ways to do things might be fun and exciting. If she's working with a physical or occupational therapist, this is where we can, with the client's permission, be in touch to see how our treatment goals can support theirs. 

0:13:57.9 RW: I did a quick search on PubMed for massage and dystonia. Most of it is about torticollis in infants, but I found a case report, I knew it was in there somewhere about massage for a person with, guess what? Trauma-induced dystonia, just like this client, except that the person in this report had had a rock climbing accident with a bad fall. The author tried a number of techniques including hydrotherapy, myofascial release, and some recommended breathing exercises and careful stretching. After five sessions, the client had improvement in several areas of function, but I will leave you to find out what that looked like because it's a bit complicated. This is a terrific case report. It was part of the Massage Therapy Foundation student case report contest. And if we have any listeners today with clients who have dystonia, this is something you will appreciate, and the link is of course, in the show notes. Massage won't resolve dystonia or cure it or make it go away, but through offering relief from fatigue and stress and our work on secondary muscle tension and holding patterns, we can be part of a coping strategy that could improve the quality of life for this person. I think that all sounds pretty promising, and I hope our contributor finds something useful here. 

0:15:17.9 S1: 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 lowercase, @abmp.com. I can't wait to see what you send me and I'll see you next time. 

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