Okay, all right, welcome everyone and thank you for making it to the end of the conference. I hope everyone's had a great conference so far, and we are thrilled to be having these advanced clinical focus days where we're able to bring you advanced topics, can ask questions. This was designed to be a point-counterpoint, but unfortunately, Dr. Yablon was unable to make it here, and so Dr. Ivanhoe has graciously adjusted her time to be able to give you an update of challenging cases and whatnot. So if you have questions, you can type them in the app, otherwise, at the end, you can also, you know, if you're not comfortable with that, just ask us at the end. So I am very pleased to present Dr. Cindy Ivanhoe, who is a clinical professor at the University of Texas at Houston, one of my mentors who I value her opinion and thoughts and everything so much. She has taught me a lot. She is director of the spasm program, which is at UT Houston, and then she is also now spasticity fellowship director. And so without further ado, Dr. Ivanhoe. Well, I am impressed that you guys are still here. I would encourage you, though it never happens for some people to move up front because I won't pick on you, but if you yell questions out, this is not exactly the point-counterpoint that we were going to plan, that we had planned on. So instead, you're going to get a discussion of a lot of, I think, interesting, more advanced cases. If this is how does a botulinum toxin work and what is your favorite, this is not what you're going to get out of today. Hopefully, you're going to get a little bit more of some of the deeper ways that we can use different interventions for the treatment of spasticity. Was anybody at Spasticity X in Houston, really, recently? There is a move or a, I guess, trend to try and redefine spasticity, and I'm not sure, they haven't gotten to the new definition yet, but we're going to talk a little bit about it. I like to call it the upper motor neuron syndrome, and as I go through the slides, you'll hear why. I am not the only speaker today who has had trouble reading this, I'm going to tell you that right now, and also, if I start to get a headache from the bright lights in my face, I have sunglasses. But these are my disclosures, you've read them, and the objective, since there weren't any when I looked on the app, here's what I came up with this morning. To discuss the real-world management of patients with the upper motor neuron syndrome, to consider what can be possible in more involved tone management, to make us all think about treatment options. What? Oh, I'm on the wrong slide? Thank you for that. They look equal here, but that's what I'm doing. Thank you for that, Todd. Okay. To look at the medical complications that contribute to spasticity, right? We always are told, from residency on, if your patient's spasticity is getting worse, you should look for a medical reason, but we don't talk about the medical reasons that that spasticity causes. And then, there is no treatment algorithm, and I'm very often asked, how much do you put in this muscle, and how much do you put in that muscle, and it really doesn't work that way. So, background, the incidence of spasticity, I had to put it in quotes, in the literature is about 40 to 89% of CNS injuries, depending what you read, and it can develop almost at any point, post-onset of a CNS injury. It contributes to medical complications. Medical complications contribute to spasticity, I guess I'm going to beat that. And there is no treatment algorithm, is what I've just read to you. Old description of spasticity is, and everybody can probably say this, and not even know what it means when you think about it, right? Velocity dependent increased resistance to stretch. Some of the definitions will say sensory motor, but very often people leave out sensory, though that is why rhizotomies are done, cutting sensory nerve rootlets. That's an imbalance between the excitatory and the inhibitory circuits of the central nervous system. So, one of the consults I've seen not too long ago was a high cervical quadriplegic, and when the sheets brushed against his toes in bed, he went epistatonic, okay? So, that is quite the imbalance between excitatory and inhibitory circuits of the central nervous system. There is a proposed unopposed increased spinal hyperexcitability. There are some, these are the parts of the central nervous system that are implicated. I'm not going to read through them all, but I chose to not go through that slide that never makes sense to people, where most people blur over and don't know, you know, what's, you know, you hit a hammer, you hit a knee with a hammer, and then you go all over the spinal cord. Anyway, what are we treating? And we're treating the upper motor neuron syndrome, and I'm going to credit Nat Mayer with this, from Moss, who was very influential in my decision to go into brain injury in the first place. So, we have the positive signs, which are the things that are overactive that are excessive. Your spasticity, clonus, dystonia, apoptosis, rigidity, all of the, that's on the slide. And then you have your negative signs, where you have loss of motor control, or weakness, or loss of motor planning, atrophy, et cetera. You can see that on the slide. And I like to think of spasticity, and maybe I'll be right or wrong, who knows, but I think of it as maladapted neuroplasticity, where the nervous system, with or without our interventions, more often than not, is reorganizing in a way that leads to sometimes more difficulty. In the neurorehab world, we are trying to work towards recovery. I try to avoid that word, too, with families, because they think that everything's going to be just like it was before, and it doesn't quite go that way, either. There is learned non-use versus new learning. If you have a patient with a left hemi who hasn't used their arm, and doesn't know their arm is there, chances are that just trying to decrease the tone in that arm is not going to make them incorporate that arm without other interventions, such as therapy, casting, what have you. There is the importance of repetition and rehearsal. If you show me a video on how to, I should say DVD, right, if you show me a recording of how to ski, does that mean I can ski? And if I tell a family member how to ski, is that going to generalize to that they can ski? You have to physically do things and rehearse them. And that can be true if you're even talking about transferring a patient, or having a patient learn to transfer. I just had a flashback of a patient, he was six foot four, and his mother was about my height, I won't tell you how low that is, and she would transfer him this way. She would stand him up and wait for the clonus to stop, and then she would pivot him. So there were things that we did for that particular patient so that the clonus was no longer an issue, and then he went on to have other medical complications later. Cognition, mood, motivation, access to training, access to the healthcare system, these are all things that are also going to influence neuroplasticity. Garbage in, garbage out. We teach people to do things wrong, and they're going to do things wrong. And then they're going to come back, like some of my patients who I've seen throughout my career, now they have orthopedic musculoskeletal deformities and other problems, shoulder issues after stroke, et cetera, is a huge issue. And then the potential doesn't stop at six months or at the age of 21 when you outgrow your CP. This had come up in the earlier talks that I was part of today. So consider the collateral damage associated with spasticity, and this slide is briefly, if you go basically through organ system, you'll get an idea of some of the problems that you can see. Pressure sores, problems with orthotics, you know, how many times patients go, I wear my orthotic and it feels just fine, and they don't feel they're orthotic, and you look in the heel, the cup of the heel, and there's like dust balls in there because they're not getting their foot in there. So in cases like that, sometimes the orthotic actually becomes more of a noxious stimulus, right? Sometimes we are the noxious stimulus when we're talking to patients or examining patients, and you'll probably see some of that in my slides. Goal setting. So this is the part where if we were in a different sort of venue, I would ask you guys to contribute to this conversation. So what, if anybody wants to call out, I know who I could pick on, but I won't. What do you want to know when you look at these ankles? And you're going to treat this patient. Does anything come to mind? How are you going to treat them? That's a good question. Is it fixed or flexible? What would you do if it's flexible? Now that you opened that conversation. Okay. Well, there are at least four botulinum neurotoxin A's in this country, I'll tell you that. And I'm on the International Neurotoxin Board, so I tend to be Switzerland. Where's my water here? So is that going to do it? How long has he been like this? Is he going to stand? So the question becomes, what is the goal of my intervention? And if this patient is in a nursing home and unfortunately a Medicaid bed and his family gave up and they're not going to come visit him, and he may or may not get bathed every day, I mean, that's one patient. If this is a patient who may be able to go home if his parents or his family can transfer him, that changes the paradigm of what you might do. Is how long has he been like this? Sometimes that's not as much of a factor as I know people think it is. Because very often if you, whether it's an intrathecal baclofen pump trial or an exam under anesthesia or you're getting somebody ready for an orthopedic procedure, you find that they're not fixed like we think they are. And even if they're fixed, is there a potential for another intervention that might help this patient gain range or potentially gain function? What is the funding? I called it, and I often do it, the F word. How are you going to get the cost of the care covered? And then the other thing is, is the care going to be consistent or is it going to be you got six sessions and now you're done and come back in a year? Because we see that a lot, too. I see heads nodding. It's sort of reaffirming and disappointing all at the same time that we're all having those experiences. So where does he live? Is he in pain? The other thing I left off is how many oral meds is this patient on and are they really doing anything? Because he dislocated that foot, that ankle. So what is influencing our clinical decision making? The severity and the distribution of the tone or the hypertonicity. Previous treatments and their responses to those previous treatments. I once had a patient early on in the days when there was one toxin that we could use in this country on a botulinum toxin and people would only use 200 units. Somebody sent me a patient who had clawing of his toes that was reducible, ankle clonus, and when you would try to stand him, his clonus would proceed up his leg, up his arm, and you would actually hear it in his vocal cords. What was I going to do with 200 units of a toxin and that? Nothing. But he ended up, with our interventions, I'll tell you what they were because I actually used him as an example when I went to the Medicaid board in Texas. He ended up going from living in his parents' basement and not being able to work to becoming a substitute teacher, going back to work, moving out of his parents' home, and coming to his follow-ups with me on his own. His combination of therapies was intrathecal baclofen, injections every three months. He was not on oral meds and appropriate therapies. We'll talk about what that may or may not be, too. Access to appropriate therapy. There you have it. Goals and commitment. It is very rare if I'm going to put a baclofen pump in someone that I've had a patient where I don't trust that family or that patient to make it there for their refills. We can talk about that, too. Tolerance of the side effects of whatever treatment. I come from a brain injury world predominantly. Oral meds don't really work. There's really no literature that shows that they will be effective, especially if you're trying to wake people or trying to help them think. So factor that in. The whole patient. We just came from lifestyle medicine. It's not just I put a pump in or I did your injections and now we're done. It's how you pull this all together. Your funding source. What is the range of motion? How much more can you gain? I live in Texas. There are a lot of cowboy boots to compensate for those plantar flexion contractures, but that's not always the best, either. So the TARDU scale. We did the spasticity step the other day. Who does the TARDU scale in the real world clinically? Do you do all the measurements? You would be the third person. Oh, it was you, Catherine. Yeah, you're in a different setting. Okay, never mind. I shouldn't have asked. I got it. I got it. Thank you. Thank you. But I'll tell you that most people aren't really. I do it unofficially. I do it unofficially and I document a joint. If it's a joint, I'm going to have to fight with an insurer to inject, so there you have that. Okay, range of motion. Clonus. I told you about my six foot four patient who would jump. Modified Ashworths. I look at them and I document them because it is expected. I can't tell you it is the major factor in how I decide my plan because I'm looking for function and a modified Ashworth score is not a measure of function and it's not a measure of potential, but people like it documented, so there you have it. Pain. There's a lot more about the interaction of pain and spasticity. There's a beautiful article. If somebody wants to ask me later, I can probably pull it up for you. It describes all the ways that people describe their spasticity. A lot of the things, I hear this from our pump nurses, will say, oh, that's not what. They don't have spasticity. They describe X and I have to get them this paper because they can say, patients will say all kinds of different things about what they're experiencing and we're not living necessarily in those bodies, so. Where am I? Let's see. Function, pain, active movement. There we go. Speed and quality of movement. If I do an intrathecal baclofen pump trial on somebody and their gait gets slower, what happened? Was that a positive or a negative trial? It was positive. I changed the way they move. I changed what was their maladapted movement pattern and now we're changing how they're adjusting to a change in how their muscles are aligning or how their joints are aligning or feeling different. A baclofen pump trial, the answer is yes or no. Did my patient have a response? Even though we talk about the modified ASHRAW score and I've had an article rejected because modified ASHRAW score was the measure that is always asked for. So there you go. Philosophy of care and neuroplasticity, I did it again. Less considered of the considerations when we're looking at patients. Muscle stiffness. Muscle stiffness is not necessarily spasticity. There are changes in the muscle fibers. They're shorter. They become stiffer. With the toxins, for the longest time, people would say, oh, they must have antibodies because they're not responding to the toxins anymore. Well, maybe the toxin isn't the treatment for what's happening at the muscle level. And that needs to be considered as well. And some of our interventions that we're doing, whether it's serial casting or tone inhibiting casting, if you find people who can do that, or standing and weight bearing, things like that, maybe we're going to help those muscle fibers be ever so slightly healthier. Changes in the extracellular matrix that are not yet understood. A lot of what we do is not yet understood and probably won't be in most of our lifetimes. There is different organization of the collagen cables within the muscle. They can be fibrotic in spastic muscles. And in short, there are muscle changes of unknown significance and unknown etiology, and we're kind of working through that. Am I okay? Since I have Stewart's time? Okay. Philosophy of neuroplasticity. Consider the stage of life. But I don't discriminate based on age, and I don't discriminate based on diagnosis. Decrease the medications. Aren't we trying to improve function? Now put people back in comas. Assess and facilitate the consciousness and cognition. Improve interaction. I never get speech therapists at these talks at any place, but isn't the speech therapist a part of swallowing, cognition? If your head's like this, how much are you going to engage? How well are you going to swallow? And people who have cervical dystonia can often have underlying swallowing issues to begin with. So, where am I on the right? Making sure I'm on the right slide now. I'm all confused. Follow your patients for improvement. Like I said, there's no treatment algorithm. I will have, probably in this talk, a patient who goes, just do what you did last time. It was perfect. And I still hope I get it perfect, but there's family training. How do we facilitate them getting into, for example, positioning? That is more physiologic for them in the longer term. What kind of equipment are people in? We're going to get through a couple of those. And allow for improvements in the function. It is not, I gave you an injection of a toxin, I watched it peak, it did well, and don't come back until it's worn off. How is that functional? That's keeping people where they are. It is not helping them to move forward. So we're going to talk about Megan. Megan is a sweetheart. She gave me written permission to do this. She is a 30 or so year old attorney with a spastic left hemisecondary to a PFO. She was referred to me in clinic for spasticity management after her inpatient and her PFO closure. Her modified ASHRAW scores are all twos and threes. Okay, velocity dependent, how do we measure modified ASHRAW scores? Yes, it's one second, but how do we measure them? At rest? So you have to watch what your people are doing when they're moving. She is now losing range of motion. She is losing movement that she had before to a degree. Active movement is associated with increased tone and ankle pain. You'll see why. Impaired balance, probably from that ankle, slow movement, flexed posture, and discomfort in her AFO. So here we go. Can you hear her? I don't know if you'll hear her, anyway. She doesn't only own orange shirts. But she did go to the University of Texas. Okay, where do you want to start? Anybody? It'll be probably quicker if I just tell you what I did, but I'm not saying that what I did was right. So what muscle groups do you want to target? Okay. Anything else? Okay. Anything else? You could do the extensor hallucis. Do you want to see her take a step? You're not going to yet, so it's okay, Erin. And then, is this next one going to work? Here we go. This is a couple months later. If you feel unstable, you don't need to walk. Okay. What are you going to do with her arm? Left leg, just pick it up. So does that feel like it's because you're weak, or is it your tone pulling you? It's my tone. Can you hear her? I don't know if you can hear her. OK, good. Because I can't actually up here. So she's telling you, because she's an intern, and she's working, and she's cognitively intact, that it's her tone. She's fighting her tone. Sometimes in my asbestos city talks, I have Harrison Ford in Star Wars. Do you remember that? Yeah, thank you. I appreciate those nods. OK, so what are you going to do? You've got her leg. You've got her arm. You could use phenol. You can use traditional physical and occupational therapy. You can give her a nice home program. What do you want to do? Do you want to put? Huh? ITB trial. Thank you, Dr. Alter. Yeah. And so I will tell you the story of what happened with her ITB trial. So here's the what do you want to do slide. Toxin, the questions might be. If so, which one, how much, and where? How are you going to decide? How do people decide what they use? That's exactly right. Is that not sick? Which insurance do they have? It used to be that we would see a patient and get and decide what our treatment plan was going to be. This is really dating me. And then we would dose according to what that patient needed in our best clinical judgment. And we used high doses of whatever we were using. And then now we set our goals based partially on what an insurance company will let us have, or Medicare, or Medicaid, which is limiting. It's limiting for patients, and not to mention our prior authorizations that a lot of us will end up doing for a living. And we don't get to bill for that. Don't you think if we could bill insurance companies, that would go down? I think that's a great idea anyway. So how are you going to decide? Insurance company. And also, what else you're going to potentially use as an intervention, like we have intrathecal baclofen. What about oral medications? They do nothing in a patient like her. They make us feel better. They certainly make my residents feel better. But they really aren't going to treat her. Phenol, how many people in here can do phenol injections? Motor points, or nerve blocks, or preference? Both? Cryo? Dan's a cryo-er. Who does cryo? Not yet? We have Wen Dockett here who does cryo currently so far. Intrathecal baclofen, a lot easier to get approved, or so I thought. We're going to get there. And then orthopedic surgeries, natural recovery, do we just sit back and go let nature take its course? Not our nature, and really not in her best interest. So here she is again. Nothing yet, except she's had injections of a toxin in her arm at some point, which is now worn off. Why do you think you hold your arm? Because I don't want it just kind of going everywhere. So if you dropped it, what would happen if you took a step? Maybe if it goes into her, it makes the picture better. OK. Bye. When this first happened, I called it the burla, burla. You did it. OK. So what does it mean if you send your patient for PT and OT? Do you know? If I had written PT and OT, evaluate and treat as a resident, my chairman would have killed me. So know who you're sending your patients to if you can, and learn what it is that can be done. Because a physical or occupational therapist who's used to dealing with one particular thing is not necessarily the patient for long-term neurologic interventions, right? And there's also this mentality, at least I feel this, maybe it's not true everywhere, of, well, you're going to only have six sessions, or three weeks, or however many weeks or months. And so if you don't make a total recovery, we're out of goals for you. And which extremities are you going to start with, and how are you going to target them? How much time, when is it time to do an ITB trial? I've been accused by some people of maybe doing it too soon, I would rather do it now, and then, not that I'm saying, I always say, getting an intrathecal baclofen pump is sort of like getting married, you don't go, I'm just going to do it, and if it doesn't work out, I'll divorce my pump, you know, it doesn't work that way. But nonetheless, if you can help somebody have a better recovery, and then you can figure it out later. So rather than watching somebody who is developing poor movement, or compensating in a way that orthopedically or musculoskeletally is impairing them further down the road, these patients, she's 30, she's going to get older, we want her to still be ambulating, we don't want her to have all those other things that come with aging, so. And when would it be time to do surgery? I know people who would send her for surgery right now for releases or lengthenings, et cetera. So let's talk about her baclofen pump trial. First, we're going to show it to you. So this is still better, but you can still see some of it, your toes aren't curling as much. She got a 50 microgram? Yes, I believe so, I haven't verified. Can you do a squat? So she's shifting off her impaired leg. Not the right way, necessarily, to learn, but definitely comes. Yeah, just so that I can, oh, is that better? Watch her knee if you can. Always watch knees in my presentation. And then she's hyperextending out. That's a habit from all the time we waited to get this trial done. There you go. Yeah, that's good. That's really good. Yeah, she has really good control. The timer again, I did like five times. Can you bend your knee? Watch this. Straighten it. Let me time you again. And bend it. So was I supposed to let her lose that isolated movement? But this is during her trial. She got a 50 microgram bolus, that's it. Now, it's very easy for somebody to look at her and say, she didn't have enough of an improvement. Look at her ankle, et cetera. But again, it's sort of like the, if somebody's walking slower, was it a positive or negative trial? We've changing her awareness to where she is. Her perception is probably impaired about where she is in space. And we don't want her to fall over. It's always bad if your patient gets a brain injury in your institution. So here, we're gonna go back. I'm gonna tell you everything that happened with Megan getting that baclofen trial. So we put in to do the trial and it got canceled. Why did it get canceled? She'd planned off her time from work as an attorney. Her mother had planned to get off of work to be there for her. And it got canceled because the insurance wouldn't approve it. So I actually reached out to the CMO of the insurance company and they would not return my calls and they denied it again. And the message I got was, she doesn't need it from a person who's never seen, and it was a physician, who's never seen my patient, may or may not understand her life situation at all. So she and her mother had decided that they were gonna pay for the trial out of pocket to see what would happen, if it was worth pursuing this avenue of trying to help Megan. And once they paid for the trial, you know what the insurance said? Well, you paid for the trial, so we're not gonna cover a pump. I should really write this one to Dr. Glaucon-Flecken, shouldn't I? Yeah, I really will have to do that. Anyway, she changed jobs eventually and got a different insurance company and that's how she now has a pump. And there was no problem, which is also quite amazing in its own right, right? So now, I don't have follow-up because Megan has her pump, we've gotten her to a reasonable dose, she still has active flexion and extension at her knee and two weeks ago, she underwent a splat, a split anterior tibialis tendons transfer to her left cuboid. Now, we'll never know if she would have still needed a splat had we not spent all this time fighting with her insurance company. She had an Achilles lengthening and then she had flexor tenotomies at her toes. Her left foot per, thank you, epic, is plantar grade and she's in a short leg splint. She can maintain her foot in non-weight bearing, we'll see what happens with her toes. It said straighter, so that makes me a little nervous that they're not really straight, right? We'll see, semantics. But this is from her, recovery is going well, I'm in the walking cast now and she's back to work. So she took off two weeks from work. So insurance obstacles, I went through it for you already. First, it was nothing. Then there were, for her toxin injections, there are still peer-to-peers every three months. I can't get that arm currently, where her pump dose is and as we're gradually working up and maybe I'll play with how she gets dosed, maybe not. But I expect that for at least time to come, she's gonna be getting injections every three months with whatever they let me use in her. They agreed to let me use a higher dose of neurotoxin at the last injection because they thought I was gonna inject both extremities but I didn't because I knew she was having surgery and I wanted the orthopedic surgeon to be able to see her up close and personal and where she is at this point. So that is sort of Megan's story for the most part. I will tell you that she was able to get a high dose in that arm of the toxin that she gets because I had samples and I could get extra in her arm. That won't always be the case and she needs it because she is so spastic or dystonic, we can talk about what that is as well because we use those terms sometimes interchangeably. Positioning and casting. This is an interesting issue. I learned this from some of my best friends are physical therapists. I learned this from therapists about how we position people in bed. Patients don't get necessarily the amount of time they need and I have a patient I was consulted on a couple weeks ago whose legs are bored, they stick straight out and I said, can you at least put a wedge when he's lying in bed and his family's visiting so that at least we have gravity trying to get his leg down and I was told, oh, he won't stay there. And I'm thinking, well, if he stays there five to 10 minutes that's already a little bit more of a stretch than I did this morning, right? So it's worth trying. Same thing with head positioning. You're trying to preserve what you can get and maybe even get some stretch out of it. Same thing with wheelchairs and we'll talk about Angie who may talk longer than I think. Angie who had positioning of her head and her body in her wheelchair is a huge issue and uncomfortable positioning will increase someone's tone too. Solid seats, if anyone ever had to get out of a beanbag chair and is not impaired, think about that when you're looking at how your patients are positioned in some of their wheelchairs. I'll pick up the pace a little bit. This was a storming patient of mine early in my career. So the goals in the inpatient setting are to get him out of this posture, to decrease his dysautonomia and you do that through your positioning, you can do that through weight bearing techniques but what it turned out he really needed was a shunt. He got a shunt and then he got casting and phenol injections, et cetera, et cetera and he got lots to follow up so who knows. Jeremy had a tumor as a child. He was about four, maybe seven, I don't exactly remember. He had injections from a doc in one state, he had his pump managed by a different doc and somebody sent him to see me largely because of his pump. He finds his, you're gonna see him move. Look at that foot. His father calls that his gorilla toes. Okay, so he's on oral meds. Clearly not all that effective. He's trying to get out of high school. How are you gonna coordinate his care? I don't think anybody's gonna throw out answers so I'll just do this. He ultimately for a while he kept that up. He started coming to me for injections and then ultimately for his pump management. I personally believe it's not enough to just say I'm an injector, I do spasticity. I think you have to manage the holes, we say in Texas enchilada because it's how you coordinate all these moving parts for your patients and then I'm gonna go through some of this. There we go. This was when I was still at Baylor and you can see him walking. Watch his arm, his shoulder retraction for one thing. Okay, let me play the next one. This is him after a splat. It wasn't tone anymore, it was contracture and he ultimately had a baclofen pump. We weren't sure it was working so I repeated his baclofen pump trial and there were subtle changes but ultimately they chose to have it removed because it was predominantly his lower limb and he was doing as far as they feel fine and but his upper limb is his bigger issue, right? So this is of course during COVID because we're doing telemedicine and Tia won't let me do that otherwise. So he had been getting very high doses on a bunch line of toxin and because he had private insurance and then he actually came to be a patient for me in a injection workshop that we had and I gave him more and I did a frontalis test where you inject the frontalis muscle and you should a few weeks later see that it doesn't move his, he had a, it still moved. And so I did what was the only thing open to me at that point which was I changed toxins and this is with abobotulinum toxin. That's amazing, Jeremy. You don't need to hear me. Okay, let me see you open it. Did you ever do that? Anyway, we're gonna move on to this next one. And when he gets nervous, he gets worse. What I want you to see in this, can we make the first one quiet? Maybe, oops, no, guess not, hold on. Ah, can we play the second one for a second? Or actually you don't have to play it. We can just freeze it. I want you to look at his arm position and his hand because what is one of the most important things you can do in a case like this is weight bearing. So one of the injection reasons, one of the goals of his injections is to relax him enough that whenever possible he can get weight bearing through that hand. But this is a really longstanding issue for him and very uncomfortable and ultimately it did lead to a lot of social issues for Jeremy. So currently, hold on, I'm going the wrong way. What happened, I hit the button with the tape over it, didn't I? How do I go forward, not backward? Story of my life, here we go. That's amazing, okay. So Jeremy has a deep brain stimulator now. He went to Florida to get it in Gainesville. I saw him with his parents recently and he feels that sometimes it is better. He may still want to get injections on top of the deep brain stimulator and they are working on adjusting his DBS. So stay tuned, maybe I'll come back next year and tell you what the saga of Jeremy is. But we're gonna talk about Matt. Matt was a patient of mine who came in to discuss the lived experience when we had spasticity X in Houston. He is 17 years post-stroke. His tone first developed into a problem two years after his stroke, which I found fascinating that it coincided with improvement in his speech. His interventions have included therapy, toxins, intrathecal baclofen, orthopedic surgeries and orthotics, I've known him a long time. I was his inpatient and outpatient doc. So his limitations are a delay in funding has been an issue and how I dose him. So he has gotten onobotulinum toxin for life. It was the only toxin actually when he was first, when he first stroked. And so he had worked up to a fairly high dose, actually a very high dose. People roll their eyes at me when I tell them his dose. But then there was a time period where his husband I think was ill and they lost their insurance. Bad time to lose your insurance when you think of it. And then there was confusion about his insurance and he had a delay of about nine months so he could get injected. Then now his husband's back at work. He is back on commercial insurance and he can get his high dose. He's not in the mood to change because he thinks he's used to what he's used to. And I have to do a peer to peer at least once or twice a year for the dose that he gets. And they'll ask me this question. Well, is he responding? Yeah, no, I like injecting all those units just because I had nothing else to do. Yes, he is still responding, he still wants it. And they can't, they're reluctant to pull back on it because he'll complain, right? But the other issue is he goes on Medicare, he won't get that dose. And we'll be changing priorities. Now he's had surgeries on his ankle. He has had a wrist surgery which you may or may not get to see. And the other thing about Matt is he is incredibly motivated, dedicated. It scares me that he rides a bicycle in Houston to come see me and he has a hemianopsia. But so far so good. His strengths are he has commercial insurance, he has a great attitude, he has great support. And that's him. He came and spoke for people at Spasticity X. It was the first time he actually talked about his stroke and his whole experience. And it was actually really moving for those of us who were there. So. When I bring it in and squeeze it, and then it gets stuck, but yeah. He's stuck. Now the other thing you don't know is he had a transfer of his flexor tendons by an orthopedic surgeon. I didn't do that one. So he has a tenodesis, right? So it's not only that you tend to inject wrist flexors like people very often do. You really have to watch your patient. And with dystonias you can have agonist and antagonist movement patterns. So you have to really either focus on what is that patient's goal, which we should be doing anyway. What is that patient's goal? And also your own comfort level. If you're, not everyone is comfortable with doing agonist and antagonist injections. So you might have to work through that. And then we. Okay, we'll move on. So lessons for Matt. You can still have ongoing progress, right? None of that six month, one year thing, but if you put him in the corner and don't treat him, you're not gonna have that ongoing progress, right? And then there are still possibilities. It's how we are creative with our patients and how creative they are. I can't tell you the number of times I have planked against a wall with Matt to show him how to get weight bearing through his finger flexors. It's probably not bad for me either. His injections with his current toxin do not last three months. So we're always kind of playing catch up and that's a factor. So Angie. Angie, long-term patient of mine. She has cerebral palsy. You probably knew that in this room. She has migraines. She has spasticity. She has cervical dystonia. She has a neurogenic bladder and she has lymphedema from her Fabry's disease. So this is when I first met her and her positioning wasn't really bad at that point. Her complaints were her migraine, her spasticity in her arms and she has a baclofen pump which had not been titrated by the physician who sent her to me. She had retired. So we got a lot going on here. And then what I did initially was get her pump dose to a better level, inject her based on whatever she needed at that point and then I had her admitted to inpatient rehab and we worked on her neck. We worked on her positioning, her equipment and we were able to document for her so she would believe me that her neurogenic bladder and bowel were contributing to her tone. And so now you have the interplay of her neurogenic bladder and bowel and her pump. She now, I'm not even sure where we are with her getting injections in her bladder or not. That's a conversation that comes up. But I want you to hear what happens with, oh Lord, did I do it again? No, I went the, yes I did, hold on. Okay, here let Angie talk again. How do we want you to inject you? Well, it's always helpful to have the shots in my arms because it makes my cathing a little bit easier. My neck is also always really tight. So having the. So the cathing issue, anybody wonder how she's doing that? She had a metrophin off procedure, so she was cathing at that point through her umbilicus, and now they did some other procedure. I'm not honestly even sure where her urologist, like where everything connects, but she still caths. Do not drink from the water bottle on the side of her wheelchair, because it's not water. But this is a huge goal for her, and it's a huge issue in terms of, she lives alone. She has a caregiver certain hours of the day. She had gone back to school and gotten a master's in social work, but she just has too many moving parts as she's aging, so. As far as it'll go. I know it goes further. How does it look by the end of the day? Like this, almost. I can't hear it. They hear it. Oh, you can't hear it? They can't hear this. Yeah. You hit it again. I hit the wrong button. The second one. As far as it'll go. I know it goes further. How does it look by the end of the day? Like this almost. But you don't know if that's fatigue or the pull. Yeah, it's probably a combination of all things. I noticed that my position really changes when I like, it's okay as long as I'm sitting here. But the minute that I go to pick up a pen or use the computer, it just it changes it pretty. So that's actually more dystonic, which is why I like upper motor neuron syndrome versus spasticity. But watch how her shoulders progressed over time, right, which happens to a lot of people anyway. And I will tell you that we have been struggling with the wheelchair positioning on this wheelchair now for three years. So that is also a factor. And it's hard to inject. Angie, you've got at least three different diagnoses. I have decided to ignore the whole bladder concern about whether or not she's getting injections or when she's getting injections, because there are just one of those things in health care right now. I don't think any toxin company would like my saying this, but I can't control that. Who sees which doctor when? I've heard people say, oh, I always make sure I inject my patient on the same day as urology. Really? That's not going to happen in my world. And then if it's at my hospital, they won't come for those two procedures on the same day, and it's just all kinds of confusing. So next will be a quick one. One of my colleagues who works in the skilled nursing facility part time came to me and said, can you do something with this neck? Do you see what's going on in that neck? So I said, yes, absolutely. If you can get her into me, I'll be happy to inject her. But it's not just going to be that I inject her, right? Because I'm going to inject her, and her neck is going to stay like that. So I have to inject her, and you guys need to, in that facility, do something to get her off that pressure area that she is creating. And we talked about different things to do, but it's going to probably involve family or a paid caregiver on the side. And how often can people do that these days? So we talked about a wedge is going to be in the same place as the pressure sore. So that's kind of an issue right now. We've talked about what sorts of things they're putting on that pressure sore. We've talked about I'm a little afraid of this. Like, is there a way to use sort of a mild TheraBand and get her head into a better position? But how long are they going to leave her there, and then are they going to cause a sore from the band, right? So these are somewhat different options. Because of where she lives, she can't get a custom wheelchair currently. So it's a somewhat self-defeating system at times. This is Garrett. I also have permission from all these families. I want you to all know that in case you're wondering. He had an anoxic and a traumatic brain injury. He is cared for in the home setting. The goals for his injections have changed from initially, can we improve function, to can we improve comfort and care for his family who take care of him. And if I'm just going to inject Jack, his legs were not, he had like nothing going on in his legs for the longest time. Now he sort of does, and you have to wonder if it's because he's so uncomfortable in general. But there's no toxin where I can give enough to fix this. So I finally broke down. It's easier to get a surgery covered often than it is toxins. Oh, but I did it again. Dammit. You can see what he looks like. This is two weeks ago right after surgery. So I'm on conclusions. Yay. It is the rare situation where there is not a reason to intervene for our patients. I think that there are not enough of us who are interested in this. Although this is impressive for like one of the last lectures of the day. Treating spasticity takes multimodal approach. How many of you have access to therapists who do serial casting or tone inhibiting casting? Excellent. You know, it does take a village. And so patients are evolving, and I feel like our role in their lives is to help them evolve. And you have to define the goals and work through it step by step by step. I have a lot of patients with intrathecal baclofen therapy. And when I go to the trial, I get information that helps me tell that patient and family what they might expect going. You know, if a patient's floppy but they have no range, you have a contracture there. And I often get asked, do you cast if you know you have a contracture? I do if we can get it done because it helps the orthopedic surgeon when they get in there. If they have a little more range or you've had a little more stretch on those nerves or veins and arteries that are also shortened by being where they are. And then this is a joke is going to be on my tombstone. Would good enough be good enough for you? So I say that to my patients a lot. And I'll say, if you tell me you're good with where you are and you don't want any more intervention, because we all have gotten times or will have family members who get PTSD from health care and health care providers like us. You don't want to do anything that is your life. It's not my life. It's not my ego. And my job, as I see it, is to tell you the options as best I understand them currently. They are changing, but not fast enough. And so, you know, that's actually a piece of the conversation. With that, I'm going to plug our spasticity fellowship. There are currently four in the country. Ours is new. And you're looking at the PR. So if you know any residents who might be interested or somebody who's willing to take a pay cut and come do a fellowship with us, that's totally fine. But I can't pay you like you're a grownup. And so with that, it says, what does it say? Your health is so good, I'm going to recommend your insurance, pay you for the privilege. Wouldn't that be lovely? Think how that would change everyone's behavior, right? So I will close there. Any questions? You looked like you were looking at questions. Yeah, there were a couple of questions that came out for you, and I think Dr. Moon has one as well. If you want to start with yours. I can't hear you. With Jerome, why did they do the deep brain stimulator? Oh, we were at options. Oral meds didn't get it. It wasn't dopamine responsive dystonia. Oh, this is family's pick. It's a good question. I don't know how you guys are in Philly, but it's really hard to get. It's easier to get a deep brain stimulator currently from the insurance perspective. So we'll see. It's a good question. Oh, we have one there. Sorry. I was just wondering if you have any experience or opinion about extracorporeal shockwave therapy. If you can get it covered, or people can. You have little to lose. Oh, I'm sorry, the question was extracorporeal shockwave therapy. Myself or my patients have not tried it, but there's some literature that's worth it. Have you tried it for anybody? There's a lot out there in terms of options. We can try this. We can try that. But we don't usually take that conversation further to where, who, contraindications, and then the ultimate who's going to pay for it. So this is more like kind of where we are right now. I have to, they're going to kill me if I don't do it soon, edit a special edition of neuromodulation, neurorehabilitation, specifically on spasticity. It will be in there. If you want to write it, come and talk to me after. Do you have more? Yes. So what do you recommend to be written in a therapy script? Oh, that's a good one. Weight-bearing. I try to get people out of compensatory techniques. Something that has seemed to at least die in my professional ghetto is crossing midline, incorporating both sides. I know there are some PTs in the room. If you would like to speak up, I am open to suggestions. And, you know, another thing, in patients who are more mobile, I know that the APTA had come out with this high-intensity, you know, the more reps and more intensity the better, but you really, I still think you still have to look at biomechanics. And there are a whole lot of patients out there, in fact one that I took out of this because it was too hard to explain, who are really messing up their knees and their hips and their low backs with some of the treatments that they're getting. So I'll put things in a prescription about that. It depends on how involved that patient is. I would sometimes say functional tasks. Focus on functional tasks. Don't ignore the involved side. Now a lot of my patients you saw, there's not one involved side. But, you know, I think just evaluate and treat. It's better if you have a team or you know who your therapists are. That's where the it takes a village line comes from because you'll have, you know, more common vision of what you can potentially achieve for that patient. It's not easy to develop, I know. But, you know, even if you know, like I have a few therapists within tier and I have a few patients in the community that I know are going to get the job done as well as we currently can. Sometimes therapists will be the patients, the referral source, honestly. Okay. And you had said spasticity can present at any time after CNS injury. When you have someone whose spasticity presents two years later and was not previously present or not problematic, do you always do imaging or do you do additional workup versus attribute to the nature of the spasticity? That's a good question. Yeah, it sort of depends on the circumstances. You know, if they – I think it's a very valid question, though, to look for something that is contributing. And it's all the usual things that we have on boards, right? Urinary tract infections, mood, other medications, there can be joint issues, all of that. But also sometimes, like with Matt, it was gradually coming back. So I did – looking back now, it's like 15 years, I did scan him again. There was nothing new. Anything else? If you find someone is not responding to one type of botulinum toxin, such as your patient with the frontalis test without results, do you switch to another type of botulinum toxin A or do you do botulinum toxin B? I stick with the A's for my own reasons. I've stuck with A's. And what makes a good splat candidate? So if they have a lot of inversion, that's one thing. If you have a really good orthopedic surgeon who knows what they're doing and isn't the orthopedic surgeon who says, I did that 30 years ago in my residency, that would not be the person to refer them to. But there's this thing an orthopedic surgeon taught me a long time ago, and that was to have – she called it the confusion test. I don't know if other people called that. Here, I'll do it this way. You have your patient move their limb or lift it up and down, and you'll see that foot and ankle invert. That's usually a good one. Now, I have an orthopedic surgeon that I have sent patients to who only does tendon lengthenings. That's all he'll do is an Achilles tendon lengthening for me. And Megan went to him, and she went to the other orthopedic surgeon that I really like who's a foot and ankle surgeon. And he had told them – they came back and they said, we're going to go with that one because he explained more and he also looked at how the foot was twisting, and he said a tendon lengthening isn't going to fix this. He made a really good case, and that was actually why I sent her to him as well. Let them make their decisions. I'm really big on that. But, you know, give them the opportunity. Yeah, I can tell you that. The pump was, oh, I'm so sorry, I'm terrible at that. And that patient who had the clonus who started the ankle and you could hear it all the way up, how did I inject him, or what body part, where did I start, is that the question, really? So he got a pump, pretty quickly, and that got titrated, and in the meantime, I was injecting his arm. So, just arm, arm, to me, arm is sometimes shoulder, but it was predominantly, that's where all the toxin went. Unfortunately, he had, this was before Keppra, and he was accidentally in another facility, given Dilantin, and had a reaction, and we lost him. Yeah? So, is there any way to get him to start with the leg, because it seems to be a spot where it's not as quickly? Like, you mean injections in the leg? Injections. There was just too much, and if you have, to the way I see it, when you have that much tone in the lower extremity, the most dramatic thing is gonna be intrathecal baclofen, if you have a means to make that happen, and I know a lot of people don't, but that's just gonna get your agonist and your antagonist in one fell swoop, and otherwise, if I'm doing injections, and this was pre-cryo, and even with cryo, you're picking and choosing. So, it's one thing, if you just need to get adductor tone in somebody so that the family can clean him or her, that's one patient, but when you have a patient with the potential to be ambulatory, I'm gonna try to knock out all the abnormal tone as I can, and the other thing, too, is even if you make somebody, essentially, floppy during a trial, or floppy with your injections, you have to decrease that spasticity to be able to access more normalization of the movement, and sometimes, you'll have a pump dose, and you'll go up too fast, and your patient will say, oh, I'm too floppy, I don't like it, and you can back down, but you do injections or cryo, you may or may not have the expertise to titrate that much in as many muscle groups, and they're painful. Yeah? Do you find any use for oral baclofen? No. So, the question was, is there any use for oral baclofen? Is there any, thank you, thank you. Yeah, you know, I know I have, most of my patients are stroke, brain injury, some MS, and some of them like it, or they'll just take it at night because it makes them sleepy, but in terms of function, it can decrease tone, but it does it through sedation. So, in a patient, you know, again, you look at the goals. If there are other people who want to speak up about their oral baclofen, yeah, Dan. So Dan finds it helpful in young spinal cord patients, you said? I have a lot of patients where I've weaned it, because I like to wean, if they're on it and they've come to me on it, as much as I can. If they're spinal cord, I'll stop wherever they are most comfortable. If we're weaning it before a baclofen pump trial, I have my reasons for that. But the majority of times, if you wean a brain injury patient, and they're not necessarily going to notice that there's an improvement. And early on, I had a patient who was on oral baclofen, and I weaned her because she was going to get a pump trial. And she was an accountant and working, and she said, oh my god, I don't feel stupid anymore. So that sticks in my head. And there are patients, they don't want to come off it, or you feel that they're doing better on it. That's, again, their lives. Talk to man. Yeah, so the question was if a patient doesn't have a baclofen pump available to them, which is a shame, honestly, and another pet peeve of mine, not yours, but is there a place for oral dantrium? Yeah, I mean, again, it's what is the situation, what are the social determinants of health, what is their liver, though the liver risks are a little overrated, and you can try it. There was a time at TIER I tried to give IV dantrium and the nursing staff and the pharmacists like freaked, because it is difficult to hang, but at that point, yeah, I mean, you can try it. It's trial and error. Unfortunately, you don't get a lot of time for that trial and error anymore, and also with patients who are injured acutely and then they get kicked to the curb or get kicked out of inpatient, they're still really changing, and there are windows and time slots in that time period where opportunities are potentially missed, but you can try it, but you should watch the liver, even though it's overestimated. You don't want to be the one who gets sued because you overestimated or underestimated the liver issues with it, and again, it can still be sedating, no matter what the books say, and you have to watch and know your patient and your family. It's the same thing if you put a pump in someone, you want to be sure you overeducate that family, I had a situation recently with a patient who has a fluonix pump where he had gone in for an MRI that somebody else ordered, my fellow knows what I'm talking about here, and he and his partner told at least four people that that pump needs to be drained before you go through an MRI scanner. They knew, they had the card, they were ignored, and he had a complication because of that. He fortunately is fine now, other than talk about having PTSD about the healthcare system, pretty still fighting the bills for that one, but yeah, anything else, you have any others? We do, for Matt, whose toxin wasn't lasting for the three months, what are your general thoughts on switching between different toxins to test how long each patient responds, knowing that insurance makes it difficult? Yeah, insurance does make it difficult, it's their choice, and it's Matt's choice. We're actually having a talk about switching his toxin, and I may actually be switching it the next time he comes in, so I'll let you all know. We'll probably switch him. But you know, people, we've got years of his getting that one toxin, and now he, you know, I'm like, well let's try this, but he's also kind of at the point where he wouldn't mind if it lasted a little bit longer. Good. No, that's a good, so his question, see, I can learn, I have neuroplasticity. His question was, if you put a pump in early, have I seen, how often do I see a patient have that pump removed? Very rarely, very rarely, yeah, but you can prevent some of those longer term complications, so kudos to you. Anybody else? Yes. Are you involved in any trials looking at the use of collagenase cristridium for the treatment of upper motor neuron syndrome and or contractures? No, not yet. Anybody? Want to talk about collagenase? Okay. Okay. And then this was a holdover for an unanswered question from your morning session. How difficult is it to get outpatient therapy coverage in the setting of some of the possible future improvements within the different diagnoses? So I'm not sure I understand. How hard is it to get outpatient therapy when you know that the patients have potential? Oh, well, you know, I do peer-to-peers for a living, and it's too bad I don't get reviews for those, huh? But you know, if you can plead your case, you know, the problem is still it's based on the contract. It's not based on the patient, and so it's currently a very frustrating system. There's only, I think, one time in this last year I said, you know what, I'm not going to do that peer-to-peer anyway, because I agreed with what they had said, and you know, but nonetheless, it's kind of an annoying issue. And then you are. You talk to nothing against gynecologists, but retired gynecologists don't get long-term disability and the potential and that bias about, you know, oh, they've been like this for a long time. I told a story this morning about a medical reviewer who had denied, and I'm not going to tell you which insurance company, though, I'd love to someday, but who had declined an inpatient rehab stay, which was totally appropriate, totally appropriate goals. And these are patients who used to get weeks or months, and now we're like fighting for two to three weeks, maybe. And the medical reviewer said, frankly, if that was my diagnosis, I'd just want them to pull my plug. And I went, it's not, I have to write that up. Judging by the reactions I've gotten today, I really need to make that one more. Yeah, it was horrible. So based on that, there was also a question from Dr. Gittler. How are you going to develop coordinated strategies to address disparities in length of stay or approval for extended or multiple stays? I think that's a plug for your academy, isn't it? I mean, we fight the fights that we fight. The academy is, I think, working on it. We have no idea what's going to happen with healthcare, especially now. And so I'm not sure, but tell Dr. Gittler for me that I would be happy to work on that project with her. Is that it? Yeah. Any other questions? Dr. Gittler dropped the mic. Yeah, well, there was just a call if you're an injector you probably got it from one of the toxin companies to Write about it. I do that every time in the past I had been asked to go and speak to CMS about it. That hasn't happened in a long time And I I really think you know, there are all these different organizations whether it's an organization for specific medical issues or it's through the Academy or I think you know, there's We're better as a united voice And then on an individual level just it's really hard after all these years to not get irritated when I talk to some of these Medical reviewers, but for the most part I take it as an opportunity. Let me educate you about what is possible and what I see If we if we do X Y & Z and it's like playing Monopoly Well, I want to do this and then I'm gonna do that and then I'm going to admit them or then I'm gonna send them for surgery or you know And then you get the peer-to-peers where they don't call you and they said they did Have you anybody else had that experience where they call you and they say, oh, you know, it's denied But they never talk to you or they call from a block number. They call from a block number I just missed an important phone call all week because I was sure it was spam and it was actually a company that I needed to talk to about something but you know or you you get in an elevator and they call you two hours after when the window was that they were gonna call you and You're in the elevator and the call doesn't go through and then there's no way to call them back so It's a really frustrating Situation. So I think we we just have to stay vocal and when you see out those opportunities to write in You write in and like I said, the the companies are pretty good about letting us know the Academy is pretty good, too Any other questions You guys are free at last Dr. Ivan who will be available for autographs

Dr. Cindy Ivanhoe

University of Texas

spasticity

upper motor neuron syndrome

multimodal approach

intrathecal baclofen therapy

patient-oriented care

treatment approvals

rehabilitation therapies

healthcare collaboration

muscle overactivity