Ep 418 - Neurostorming:"I Have a Client Who . . ."Pathology Conversations with Ruth Werner

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0:02:41.6 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 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 clients' 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 incorporates a few of my favorite things to talk about, including central nervous system injury and the importance of being sensitive to non-verbal communication and understanding things we can and can't do with massage therapy.

0:03:45.7 RW: This is an intense and tender story involving a young patient who is in a bad way, and they're not going to get better, but their massage therapist wants to help, if possible. So let's take a deep breath and take a closer look. Our contributor says, "I have a client/patient who has chronic paroxysmal sympathetic hyperactivity aka neurostorming from cerebral venous thrombosis. This patient has been in the hospital for the last 10 months with no improvement. I started working with them twice a week in January of this year. The palliative care docs are who reached out to me to see if massage therapy could help with this patient's spasticity from neurostorming, but the main thing I've been trying to help with is to try to reduce the severe contractures in the patient's toes, feet, knees, fingers, hands, and arms.

0:04:45.2 RW: Now I'm questioning this goal. Their feet and toes are as plantar flexed as possible, and the knees are hyper-extended as possible. The patient goes in and out of limited consciousness. When they seem to fall asleep, the intensity of spasm or holding slightly relaxes, and I try to work fast in those moments. I have encouraged the patient's parent to try to do as much gentle passive range of motion as possible throughout the day. This patient has presumably developed chronic pain due to sequelae of ischemic strokes. Sometimes they grimace and cry and pull away from various interventions, and this is the reason why I'm wondering if I should shift my goals for this patient, because every time I work with their hands, it causes pain. At our last session, I just did very gentle forehead and scalp massage, and the patient seemed to fall asleep and their heart rate lowered.

0:05:45.1 RW: I'm wondering if I should switch to focus on this type of relaxation and do that every other session or intermingle it in one session with the difficult parts of joint movement and work on the hands and feet. The patient's condition is not expected to improve in any way, so I don't wanna add more stress or suffering to them with massage. Do you have any advice for me?" Well, yes. Yes, I do. But first, let's talk for a bit about chronic paroxysmal sympathetic hyperactivity or neurostorming. Chronic, ongoing. Paroxysmal, a sudden increase or occurrence of symptoms often for a short time. And sympathetic hyperactivity, overactive sympathetic responses, of course, which can include elevated heart rate, super high blood pressure, sweating, and a lot more. I looked up paroxysmal sympathetic hyperactivity, or PSH, and here's what one of my favorite sources up to date has to say.

0:06:51.2 RW: PSH is a clinical syndrome manifested by paroxysmal episodes of sympathetic activity that occur in patients with severe acute brain injury. Core clinical features include tachycardia, hypertension, tachypnea, hyperthermia, sweating, and/or increased muscle tone with possible dystonic posturing. Well, that certainly seems to describe our patient, at least in terms of the increased muscle tone and dystonic posturing and tachycardia. Up to date goes on. It has previously been referred to as autonomic storms, sympathetic storms, hypothalamic dysregulation syndrome, dysautonomia, paroxysmal autonomic instability with dystonia, and even diencephalic autonomic epilepsy, which mischaracterizes the diagnosis because PSH is not epileptic in nature.

0:07:48.1 RW: In 2014, an international panel was convened to define the syndrome, its preferred nomenclature, and its diagnostic criteria. PSH was chosen as the most appropriate name because it conveyed the main characteristics of the syndrome, which includes sudden episodic manifestations of sympathetic excess, and it reflects the current understanding of its pathophysiologic mechanisms, pure sympathetic hyperactivity. Then I went to the National Institutes of Health, where I learned this. Most researchers gradually agree that PSH is driven by the loss of inhibition of excitation in the sympathetic nervous system without parasympathetic involvement. So we have an imbalance in autonomic responses here. PSH is usually associated with traumatic brain injury, it affects 8 to 10 percent of people with TBI. And it's associated with a poorer prognosis than we see for those who don't develop PSH.

0:08:49.8 RW: I've also run across this topic as a possible complication of spinal cord injury too. It has only recently, remember 2014, so I'm calling 10 years ago recent, that PSH was fully defined, and that diagnostic criteria were identified. That's a really important step because it allows for better research with the hope that at some point treatment options might emerge. For right now, we're just trying to understand how the sympathetic and parasympathetic responses become so disconnected and uncoordinated. I found a terrific article that will be listed in our show notes, of course, and they encapsulate the current status of PSH understanding and treatment well. They say, obstacles to the development of PSH treatment are the following. Number one, insufficient understanding of brain regions.

0:09:41.1 RW: So if you feel a little lost in neurology, you're not alone. Number two, no definite relationship between neurotransmitters or hormones and clinical symptoms. It seems like neurotransmitters would be a good place to start. That does not seem to be helpful. Number three, lack of standardized measures to assess the curative effect. And number four, insufficient evidence from clinical trials regarding the benefits of intervention for long-term outcomes. So we don't have a way to measure whether an intervention really works, and we don't have evidence regarding any intervention for long-term success. However, significant progress has been made in the management of this complication with the goals of avoiding the triggering event, relieving excess sympathetic nerve activity, and alleviating adverse effects. And we'll come back more to those treatment options shortly.

0:10:40.7 RW: We know that this client has a history of repeated ischemic strokes, and that's what has given rise to their PSH. I infer that they're a child or a young adult because their parent is involved in their care. The cause of this patient's strokes isn't given, so we don't know if they're related maybe to a heart condition with failed valves, or an autoimmune disease, or some other cause. But we know they get these paroxysms of sympathetic reactions, or these neurostorms. And neurostorming can be dangerous for many reasons. Pushing the blood pressure so high, sometimes for minutes or hours on end, can cause cardiovascular damage. Pressure sores are more likely because of spastic contractions plus increased sweating.

0:11:30.8 RW: Patients can become dehydrated and undernourished because these events consume an enormous amount of energy. There are several treatment options to deal with some of the consequences of PHS, but these include things like opioid painkillers and high-level tranquilizers and drugs that reduce blood pressure. That all sounds really intense for a young patient, and it would be good to have a clear idea of what that situation is to help us make decisions about massage therapy. As our contributor described, this patient experiences what looks like painful spasticity in their hands and their feet and their legs, and the palliative care team have asked for the massage therapist to see if it might be possible to address this. And what our contributor found is that the answer appears to be, "probably not." But if I shift my attention to promoting comfort and relaxation, some good things seem to happen.

0:12:29.9 RW: Our contributor got back to me later with some more information that I'll share in a moment, but I do wanna interject just a tiny bit of neurology here. When you were in massage school, did you learn about upper motor neurons and lower motor neurons? I didn't, but then of course my first program was only 125 hours long, so that's not really surprising. I found out about this much later, but it turns out that in the realm of central nervous system injury, understanding upper and lower motor neurons turns out to be important for bodywork. Upper motor neurons exist entirely within the central nervous system. They are motor neurons in the brain and in the descending tracts of the spinal cord. Do you have that picture in your mind? Good. Hold on to that. Lower motor neurons have dendrites in the anterior horn of the spinal cord, but then their fibers leave the central nervous system.

0:13:27.0 RW: They go to the dorsal root ganglia, that's where the cell bodies live, and then they have these long, long axons that extend out into the muscles and glands of the body. So lower motor neurons exist mostly in the peripheral nervous system, just except for that little bit of the fibers that reach into the dorsal horn of the spinal cord. You got that? Good. So upper motor neurons carry messages from the brain down those descending tracts to the appropriate level of the spinal cord, and then they have a synapse of various levels of complexity with lower motor neurons, which carry those instructions out to the muscles and glands to contract or to secrete. But here's the thing, if there is damage to the upper motor neurons, the ones that start in the brain and go down the spinal cord, this damage reflects in the muscles as spasticity. But if there's damage to lower motor neurons, those are the ones that have short projections in the spinal cord but mostly live in the peripheral nervous system, this reflects in the muscles as weakness or flaccid paralysis.

0:14:39.1 RW: Peripheral nervous system neurons heal better and faster than central nervous system neurons. Central nervous system neurons can grow and change, that's neuroplasticity, and we are slowly, slowly, slowly learning how to use that quality to improve life and prognosis for people who have central nervous system injuries. But often the outlook isn't great, which today's conversation demonstrates. Why does this matter for massage therapists? It matters because when our clients have spasticity, that is related to nerve damage in the central nervous system, and massage is unlikely to have a significant positive impact.

0:15:21.9 RW: The thing that's making those muscles tight is out of our reach. I do though wanna mention a couple of nuances to this because it's not entirely black and white. Number one, it is possible, especially after a big trauma, to have both upper and lower motor neuron damage, and that gets very confusing. And number two, spasticity related to upper motor neuron damage is reinforced by proprioception. That is, our proprioceptors, sensory neurons in the peripheral nervous system, can interpret chronic and painful spastic shortening as normal, and that makes the process worse. It becomes self-fulfilling.

0:16:08.1 RW: Some of this might conceivably maybe be addressed with some bodywork, but this is usually going to be in the context of a patient or client who has a lot more function going on than the person described in today's story. In any case, it doesn't surprise me that the bodywork addressing this patient's painful contractions was not well received. Nociception is intact. The impulse to tighten those muscles is coming from a place beyond our reach, and receiving direct work is, in fact, probably really painful. Think about if someone insisted on working directly on your spasming calf muscles when you're having a charley horse. But moving this patient into a more relaxed state through pain-free, comforting touch, that seemed to move the needle on relaxation and undoing some of the consequences of the neurostorming.

0:17:06.2 RW: Here's what our contributors sent a bit later. They said, "My perspective has developed somewhat since I wrote to you. The last time I saw this patient, their caregiver/parent wasn't present with them, and as soon as I started speaking to them about what I was planning to do, a tear fell from their eye. I think my interactions with the patient have become just another distressing ordeal that they are forced to endure without their consent. So I have decided that I will only work with them when their parent is present. The parent had given permission for me to work with the patient anytime I was able, even if they weren't present. And even in the presence of their parent or their caregiver, if it seems to me that my work is causing distress, I can't do it. It's breaking my heart to imagine how awful it must be to not be able to clearly communicate one's wishes for their own body.

0:18:04.9 RW: I think at the beginning, I was focused so much on the physical state of the patient, I wasn't deeply considering the emotional and mental trauma that I might be causing." It's all a bit heartbreaking, but this massage therapist, through being sensitive to nonverbal signals from their client rather than imposed directives from the client's health care team, has realized that their work is not having its desired effect. I imagine this patient doesn't have a lot to look forward to in their daily life, and wouldn't it be great if massage was a treat instead of an ordeal? I truly hope this patient's parents and caregivers and health care team recognize how this massage therapist might really be helpful, as long as, and only if their work is welcomed and not painful.

0:18:58.9 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 lowercase, @abmp.com. I can't wait to see what you send me, and I'll see you next time. Hello, "I Have a Client Who... " listeners, Ruth Werner here, and I'm so excited to let you know that my library of online, self-paced, continuing education courses has just expanded. I now have a two-hour ethics course called A Doctor's Note Is Not Good Enough... And what is better.

0:19:47.2 RW: This NCBTMB approved course goes into why a doctor's permission or approval or even a prescription doesn't provide the legal or safety protection you might think it does. Then we look at how to start useful conversations with health care providers that will actually get us to safe and effective massage for our clients with complex conditions. Visit my website at ruthwerner.com for more information and to register for A Doctor's Note Is Not Good Enough... And what is better.