Again, welcome everyone. One housekeeping item is that if you don't have the latest version of Zoom, it would be helpful if you try to update it now so we can take full advantage of the break rooms that we have. So that would be very helpful for everyone. Otherwise, we will figure out how to do it, but we're trying to make it as seamless as possible. Well, again, thank you for being at our very first clinical community forum for the limb loss restoration and rehabilitation community. We are very excited to bring to you guys what we hope you find this an engaging program that brings in people from all over the country to bring their expertise on limb loss restoration and rehabilitation. So thank you for joining us. We will be here for a good long while, but we've built in breaks for you so we don't feel like we are stuck with this Zoom for a really long time. Again, we're grateful that it's allowing us to meet. So I'm Dr. Marlies Gonzalez-Fernandez. I'm vice chair for clinical operations at Johns Hopkins University of Phyllis Medicine and director of the limb loss restoration program at our institution. And we've brought in a great group of clinicians that will be involved in different sections. In the interest of time, I'll let them introduce themselves as we move through the sessions. But again, without further ado, we will move on to our first lecture that is called the spectrum of phantom limb pain by Dr. Noelle So. Noelle? Hi. Thanks, everyone. So let's make sure I muted all. So my name is Noelle So. I'm the amputee medical director at the Denver VA regional amputee center. I'm also an assistant professor at the University of Colorado. And I am happy to be here and chat with you today about limb loss as well as my talk, which is the spectrum of phantom limb pain. Let me go ahead and pull that up. Hopefully, y'all can see that. Okay, can everyone see my screen? Okay. Okay, perfect. So the viewpoints are not that of the US government or the VA. I have no financial disclosures. First, when we talk about the spectrum of phantom limb pain, it's important to talk about a definition defining it. And so the ISP was tasked recently with revising their definition of pain. It's an unpleasant sensory and emotional experience with or resembling that associated with actual or potential tissue damage. Pain and nociception are different. It's a personal experience. Individuals with their history and, you know, experiences have an individual concept of pain. It's unique, it should be respected and can be expressed through many different ways, including nonverbal. When I talk about phantom pain, I think the hard part for our professional community is we really don't have a good cohesive definition of phantom limb pain. And so I thought Max Ortiz Catalan did a really nice job talking about stochastic entanglement theory. And so this basically talks about, and so he's an engineer. And so he looks very big picture. And he says, hey, listen, there's this whole system. And there's all these different parts of the system. And any part of that is susceptible to being damaged. And then it gets entangled with other networks. And that can lead to phantom pain. So it doesn't necessarily mean what part. It's mostly about something went wrong in the whole big system. He states in his paper, phantom limb pain is pain perceived as arising from the missing limb due to sources other than stimulation of nociceptive neurons that used to innervate the missing limb. So this is where, and I think this is a big important part, distinguishing nociceptive pain versus non nociceptive pain when we talk about phantom limb pain, because there's different treatments and different considerations for that. However, I think it could be nociceptive as well. And so we probably got into like a half hour discussion about this. And nonetheless, we agreed to disagree. But I think the biggest part is that neuroma pain is not the only source of phantom pain. And it shouldn't be used analogous to their separate phenomena. And so neuroma pain can contribute to phantom pain, but it is certainly again, not phantom pain. And so let's talk a little bit about the basics. Oh, sorry. Excuse me for one quick second. Sorry, my husband's trying to sabotage my talk, setting off the alarm. Anyway, so this fire signal was, it was just happened to be good timing. So nonetheless, there's a sensation, a signal, and that can be heat, that could be, you know, touch, vibration, movement, body, arms, and space. That goes to a peripheral nerve, that peripheral nerve, depending on what the sensation is, is received by various different nerves. So the larger myelinated nerves, movement, small sensory, cold, pain, perception, and the autonomic, sweating, blood pressure, etc. That goes to a plexus, to the nerve roots, the spinal cord, there could be a reflex to withdraw from the signal, and then it gets processed in the brain. And so some basic treatments we can cause if we distract the signal. So I like this one because I have young children, and I think that if you give them something to do as simple as folding face cloths, your walls don't get colored with crayon. So distraction techniques, TENS units, modalities, movements, exercise, I'm thinking about how the prosthetic components are pushing on the soft tissues. You know, is there pissing happening? Should we change the suspension? Is the socket too loose, too tight? Are there nerves that just are quite irritated? Is the alignment off such that certain soft tissues are getting the impact? Those are ways that the, you know, signal can be also addressed. Regarding the peripheral nerve, plexus, spinal nerve, spinal cord, brain, you know, there's all things, other things, we can always inject stuff, we can do some surgical stuff, we can implant things, we can talk about it, we could do cognitive behavioral therapy, and we can always throw medicine at it as well. So if it was as simple as that, it would just be like a light switch. There's a signal, the wire that feeds the outlet is the peripheral nerve, the outlet itself is the spinal cord, then there's the light switch that goes on, and then the brain, you know, is where the light bulb is on. But the truth is, it's not this simple. So if it was this simple, what could go wrong? And it turns out a lot of things can go wrong. So just a little bit beyond the basics, you know, the dorsal root ganglion is at the spinal cord level itself, and that has so many different potential amplification for pain signal response. The neuroma itself can also amplify the signal. So what I tried to exemplify in this drawing is when you have a force that goes down onto a nerve, there are mechanical receptors, and so if this force generated kind of four mechanical receptors, you get a certain signal. If you do that to a neuroma, for instance, you actually have way more amplification of that mechanical receptor, and that can cause the proximal propagation of phantom pain or contribute to pain in that limb that's no longer there. However, once again, it is not the same thing analogous. The dorsal root ganglion is, as we all know, sort of a gate for pain, and so it can upregulate or downregulate pain signals. One thing that I think is really important to recognize is that the sympathetic chain outlined here in yellow is so close in proximity, and, you know, in a short while, I'll also explain how that can also upregulate signals. This is one of my favorite slides. This is about all the different receptors at the peripheral nerve level, dorsal root ganglion level, as well as the descending fibers, and so the reason why I think this is important is because you can see that when we throw medication at folks, you know, if we're thinking that the issue is, you know, more peripheral nerve, that's going to change the choices that we're going to make. If we're thinking that this memory of pain is more, you know, in the spinal cord level, then, you know, then we're thinking of another set of medications. The Dutch did a whole bunch of systematic reviews and showed not one medication is good for phantom limb pain, and I think the reason being is because there's all these different reasons that contribute to phantom pain, and so if we're looking only at one particular set of receptors, then we're really missing a whole portion of the spectrum, and so with the peripheral nerve, there's also, as you're consistently activating C unmyelinated fibers, it turns out that the C fibers are necessary to maintain our somatosensory cortex, and over time, when there's overactivation, there's this emphatic signal that causes those C fibers to kind of cross over where the A alpha, A beta, A delta fibers actually start taking over and crossing over, so something that would normally be movement or pressure all of a sudden feels like a sharp pinpoint type pain, and like I said, that C fiber has a role of maintaining that somatosensory cortex in the homunculus, and so they actually show reorganization when there's a difference between the degree of that crossover phenomena. When your lower limb representation in your brain's somatosensory cortex starts to kind of for lack of better word, kind of die back or regress, some of the other locations start to kind of invade that area, and so if you'll look in the upper corner here, I don't know if you guys can see my error or not, but you can see that actually the genitals are actually quite close to the representation of the foot, and that's one of the reasons why a majority of folks who have episodic phantom limb pain say that urination is one of the triggering factors or most common triggering factors of such. And so I think that was just to zoom in a bit further on that, and so when we talk about telescoping of the phantom limb, that's actually the representation or the image in our brain of this phenomena actually happening to the homunculus, and so there are studies that show that that telescoping phenomena can be associated with a higher risk of chronic phantom limb pain. So having said that, I don't think that, and so again, some people say that this particular phenomena where there's reorganization of that homunculus, that's what phantom limb pain is, and again, I think we're doing a disservice when we zoom in only on one section of the cause of that whole system, and so again, I do think that this was a good definition, but the nociceptive pain, those C fibers maintaining that somatosensory cortex, that's where nociceptive information can actually contribute to that phantom limb pain, so that's where I also disagree. When we talk about the sympathetics, the sympathetics kind of go along all the peripheral nerves, again, also at the dorsal root ganglion. It's also in the amygdala, and as we know, the amygdala is really important for upregulation of the papaz circuit when we're trying to make long-term memories in the brain. It's also our emotional and primitive center. There is a lot of correlation with needing to protect our body for survival when something traumatic happens, and so the sympathetics can, like I say, upregulate the memory at any point along that kind of basic peripheral nerves, spinal cord, brain level, and I apologize, there should be a picture here, but so there's also something called, we all know about the spinal thalamic track, which is for contralateral pain and temperature perception, but a lot of folks don't really know about the paleospinal thalamic track, so this is a rudimentary track that actually has a whole bunch of projections, and then I think the spinal thalamic track is where it really kind of fine-tuned it, so the interesting part about the paleospinal thalamic track is that it projects, so not all fibers cross right away. Some fibers travel ipsilateral, and the projections are actually in a lot of places that we study for chronic pain, including the periaqueductal gray matter, the reticular activating formation, cingulate gyrus, and it also has bilateral synapses of the somatosensory cortex, so in that definition, some people, for instance, maybe they have an extra active old highway that gets activated by mistake, and so a lot of those chronic emotional symptoms that are associated with chronic pain, these, like I said, projections to the paleospinal thalamic track correlate. Other things that can regulate signals are the cytokines and neurotransmitters, so cytokines are small secreted proteins, neurotransmitters are the chemicals released by a nerve or neuron, and so it's basically like throwing, you can, the cytokines and neurotransmitters can either throw gunpowder on a stimulus, making it turn into fireworks or something really grand, or it can be a rescuer, where it kind of puts out that fire and dampens the signal, and so basically, cytokines, neurotransmitters, they all act on all these locations, so at the signal level, you know, we were talking about, you know, the mechanical receptors, well, you throw a little bit of cytokines or neurotransmitters on there, it has potential to even upregulate it even more, and so the same at the peripheral nerve plexus, spinal cord, and also in the brain. The other thing I want to talk about is glial cells, so, you know, glial means, in Latin, glue, and the truth is, is that they have so many more functions than just to be the glue or the support cells of the central nervous system, so these are the various different kinds, or sorry, peripheral and central, so these are the different kinds of neuroglial, and one of the things that's really interesting is that these glial cells, again, are kind of everywhere, and they can throw gunpowder on things, they can upregulate those signals as well, and so they do that through, so the glial cells also are activated by, you know, prostaglandins, ATP, substance P, nitric oxide, and then they can also cause even more inflammatory reaction, and so it's sort of this cascade effect, or throwing gunpowder on that signal, and so, you know, if these fireworks were kind of where all those cytokines work, and then, you know, here are your glial cells, you know, the cytokines work there as well, so it's a pretty crazy mess, I guess, and so, you know, there's a lot more information about these glial cells, there's some medication or targeted therapy, seeing if they can dampen the glial cell response to chronic pain, or the memory of pain, and so these are kind of some things just to keep an eye out for on the horizon, so when we talk about what could go wrong, the answer is quite a bit, and it's just not as simple as a one-way kind of light switch to a wire to a bulb kind of phenomena, there's a lot of different avenues where something could go wrong, hate to sound like an alarmist, but that's the truth, so overall, it's important to know that phantom pain is a personal experience, just like all pain, it's a spectrum, it's not a single disorder, it's like chronic pain, it's a spectrum of pain, and there's various ways that you can get there, and so there's not a one-size-fits-all, neuroma pain does not equal phantom pain, but it can contribute to it, and in order for us to have really effective research on how we can treat this about, you know, chronic versus acute versus whatnot, I think one of the important things is we're needing a consistent definition so that we can all agree upon when we're doing research and seeing what medications may or may not work for the different kinds of phantom pain in the spectrum, and I know that was pretty brief, but with that, I will take any questions or any questions in the chat box. Yeah, thank you very much, Dr. Sell. We have one question in the chat box that states, any experience with patients with prior CRPS from trauma, any suggestions on management of phantom limb pain of those patients? Yeah, and so I think, so are they having, I guess my question is, is there having the amputation for complex regional pain syndrome, you know, I think that there's a lot of things that you can do on the front end during the surgical part, you know, so yes, they're under general anesthesia, but I would also put, recommend that you put in an epidural as well as do a nerve block at the time of amputation such that you're blocking it kind of at all the places that maybe a memory can form. I think the things that we typically would use for lowering the sympathetic response would be appropriate. I think also, I personally went after all kind of new amputations, like to block a little bit of the NMDA channels for long-term potentiation at the spinal cord level, and so I will often use usually the tricyclic antidepressants because of their, like I said, minimal NMDA blockade there. Desensitization is important. I think anything that, again, deep breathing, cognitive behavioral therapy, all very important. You know, our folks that, who had a traumatic limb loss versus a non-traumatic limb loss, I think there's also different implications on that as well due to the sympathetic activation and the massive cytokine release and inflammatory release during the time of their amputation. So, I hope I didn't get too far off the track, but yes, I hope I answered that question. I wasn't sure if it was for now or the amputation itself caused complex regional pain syndrome. Well, I think we will have time later on for more questions, so in the interest of time, thank you for that. We will move on to our next section. So, this is our breakout session for the group. I wanted to let everyone in the room know that because of what could have been a technical challenge, we've reduced the rooms to three, so everyone who's here will be able to experience one of the rooms. The first one, so the room on lower limb prosthetic innovations will not happen right now. We will be doing that discussion during the prosthetic forum a little bit later, so don't despair. We can have all those discussions then, so we'll have, again, room one will be pediatric prosthesis topics with Dr. Glenda Boskus and Jeremy Sherman. We will have upper limb prosthetic topics with Dr. Daniel Melton and Jared Rammel, and the third room will be prosthetic billing basics with Dr. Wheeler and Joseph Sadowski. So, we will be dividing you into three groups, and the presenters will be moving out of the rooms every 20 minutes or so, so again, if you have any questions, please feel free at any time to enter them in the chat boxes. We will have people looking at those and recording them to try to get to them in the prosthetic forum if we run out of time in these specific rooms, so I will let the staff help us now divide the group into three. Well, welcome back, everyone. We are pretty much halfway through our program today. Thank you for being here with us. We will move on to our next lecture. Dr. Mary Kessler will be talking about limb loss-specific outcome measures. I'll let her introduce herself. Thank you, Molly. Thanks, Dr. Gonzalez-Fernandez. I'm Mary Kessler. I'm an assistant professor at Johns Hopkins University School of Medicine. In addition to being medical director of one of our rehab units at Bayview Medical Center, I work with Dr. Gonzalez-Fernandez in our Comprehensive Prosthesis and Orthosis Rehabilitation Program, so I'll be reviewing some limb loss-specific outcome measures as well as some more general measures that can be used in this population. Molly, we can't get a good view of your slides. Oh, okay. Let me fix that. Let me stop sharing because I don't know where it is. Oh, it went over there. That's interesting, the beauty of multiple screens, right? Are you able to see the PowerPoint now? Okay. You know what? I'm just going to do this. It's not as fancy, but at least everyone can see them. And I'm concerned if I go into presenter mode by accident, it's going to not be so great. I think it'll work this way. Thank you. It'll be useful to see it. So I know nothing to disclose. So got to go through things to consider when selecting outcome measures for your clinical practice. Reviewing some of the outcome measures that can be used and then talk about how you could possibly use them in the clinical setting and then looking forward the future of outcome measures. When thinking about incorporating outcome measures into your clinical practice, it's important to remember that there are two classes of outcome measures, self-reported measures or subjective measures, as well as performance-based objective measures. They both serve a purpose and they're both useful to track. Self-reported, you get to see how the person thinks they're doing, whereas performance-based is very objective. Sometimes they correlate well, sometimes they don't. But also in the era of telemedicine, using self-reported measures can be a useful way, an additional way to track how our patients are doing when we can't physically see them in the office and do performance-based measures. It's important to note that there are more measures designed for people living with lower limb loss than upper limb loss, and because there are more people in the world with lower than upper limb loss. Most of those limb loss-specific measures are specifically geared for people who use prosthesis. And at this time, most of them are primarily useful for research because they provide group comparison and either don't have good enough test-retest reliability to use them for individual comparison, or just we don't have the data to support use for individual comparison. So when selecting an outcome measure, it's helpful to find one that's specifically designed for the limb loss population or has been studied, at least in this population, is clinically relevant, is valid and reliable, can be used for individual comparison because you're comparing the person from one point in time to another point in time, not to a whole group. Has a reported minimal detectable change because you need to know if the person's doing better or worse than before. Are not significantly limited by floor and or ceiling effect. So if someone is fairly low level to begin with, you want to make sure you can capture if they're declining, or if someone's really high level, you want to make sure you're capturing when they are continuing to do better. So you want to avoid floor and ceiling effect. You also want to make sure that the measure isn't overly burdensome. You want to consider the time, supplies, space, staff and training to do these measures consistently and appropriately. So going forward, I'm going to talk about some measures that meet all or some, hopefully all of these criteria. So that way you could consider incorporating them in your practice if you don't already. So I'm going to start with self-reported limb loss specific measures. The first is a prosthetic evaluation questionnaire mobility subscale PEQMS. This is specifically for lower limb loss prosthesis users. It's 12 questions and the total ranges from zero to 48 points, you just add them up. The MDC is 5.5, so the minimal detectable change. It's thought to, there's evidence that it correlates with K levels. So it can be useful in someone who is a prosthesis user and monitoring their function over time. There's no floor ceiling effect and it takes about five minutes to do. And my understanding is that this is in English as well as in Spanish. Another survey is the prosthetic limb user survey of mobility, the plus M. This is geared again for lower limb prosthesis users. It comes in a 12 or seven item paper form or the computer adapted version. You calculate the raw score, you just sum up the score and then you find the associated T score, which is on the table that comes with the test. The MDC for these tests respectively is 4.5, 4.69 and 6.42. And Brian Hafner's group from University of Washington that developed this recommends using the 12 item to version to monitor mobility in an individual over time. This also correlates with K level, has no floor or ceiling effect and takes less than five minutes. And this one in particular has been translated into multiple languages and those versions have been studied to varying degrees. So self-reported general measures that have been studied in the limb loss population. First is the activity specific balance confidence scale or ABC scale. This is for someone with lower limb loss who's a prosthesis user, that's when you would, that's when it's been studied. It's 16 items in the original version, the individual will rate each item from zero to 100% rating how confident they are doing that task. These percentages are averaged and the MDC is 14.36%. There's a revised version where people rate each item from zero to four, depending on how confident they are, it's averaged and the MDC is 0.58. Again, correlates with K level, no floor or ceiling effect and takes about five minutes to do, but it's not designed to be amputee specific. Finally, for our upper limb loss individuals, we have the quick disabilities of arm, shoulder and hand quick dash. This is a survey that can be used for with or with, even if the person is not using a prosthesis, they can still complete the survey. It's 11 items scored one to five and then the total is scaled between zero and 100. With this scale, with this survey, higher score is associated with greater disability. MDC is 17.4 and this quick version takes 10 minutes. So there's a reason why I included this one and not the original disabilities of arm, shoulder and hand. Moving on to performance-based limb loss specific measures. I have a sense that most people have encountered or heard of the amputee mobility predictor, but if not, the AMP is a measure that can be used with or without a prosthesis. And so AMP no pro without prosthesis, AMP pro with the prosthesis, and it's made up of 20 or 21 items respectively. And the maximum score is 43 and 47 respectively, assuming you're including the score for the assisted device that's used during the test. MDC is 3.4 and this is also been, there's evidence that this correlates with K levels, which is nice to have a performance measure tool that you can use on someone even before they have a prosthesis just to provide further evidence to your clinical decision-making. There is a variance of the AMP pro for people who have bilateral limb loss because one of the items requires someone to go from sitting to standing from a chair without using their arms. And that would not be feasible for someone with bilateral transfemoral amputation. There is a bit of a ceiling, there is a ceiling effect. So I'll go into the alternative for that on the next slide. The equipment that's required is a stopwatch, two chairs, 12 inch ruler, pencil, four inch high obstacle, stairs with three steps and 15 foot walkway. Most of the things that are in a therapy gym. And it takes 10 to 15 minutes to do according to the information about the study, about the measure. So for people who perform too well on the amputee mobility predictor, there is a comprehensive high level activity mobility predictor or CHAMP. So this is for people who score at least 37 on the AMP or for the six minute walk test, they walk at least 250 meters or two minute walk test, they walk at least 97 meters. And we'll be talking about those measures later. The CHAMP is helpful in differentiating especially your K3 and K4 ambulators, people who are high level. It's made up of the single limb stance, Edgrin sidestep test and T-test and Illinois agility test. The maximum score is 40. The MDC is 3.74 and it takes less than 20 minutes to do. Finally, for our upper limb loss patients, there's a brief activities measure for upper limb amputees, the BAMULA. This is made up of 10 items scored zero or one. The MDC is 1.9 because the score is summated. There is a ceiling effect, unfortunately. To perform this, you need a 20 pound object, bag, pants, 64 ounce jug of liquid with handle and flip top lid, wallet, table, countertop shelf at eye level, comb, fork, door with doorknob, refrigerator, 16 ounce water bottle with screw top and medium sized cup. So it's a lot of things. So you definitely have to have a system in place to perform this test accurately. And so you have all the equipment available. If you do have that all available and a skilled administrator for the test, it takes about 10 minutes to do. The original one, the activities measure for upper limb amputees was 18 items, had more complex scoring and therefore took longer. So for general performance-based measures, there's a four square step test for lower limb prosthesis users. This is a time test that assesses balance. You need four canes and a stopwatch and you set them up in an X or a cross shape and you have the individual walk around over the canes and clockwise and then back and turn around and then walk backwards, walk back counterclockwise. So you time it and the MDC is two seconds, takes less than five minutes generally to do. Then there's also the 10 meter walk test. I included this even though there's no MDC reported, but I think it serves a purpose. It measures self-selected walking speed and assesses walking capacity. And because we know that depending on someone's walking speed, this is associated with how well they can walk. Are they a community ambulator, limited community ambulator, what's their fall, as well as being associated with fall risk and morbidity and mortality. To perform this, ideally you would have 14 meters of walkway, which would allow for two meters at each end to ramp up and slow down and a stopwatch. And it takes about five minutes to perform. As I mentioned earlier, there's some timed walk tests, the six minute and two minute walk tests. These both assess endurance. The six minutes walk test, you have someone walk for six minutes and measure how far they walk. PMDC is 45 meters, has really good test-retest reliability. The intra-class correlation coefficient is 0.97. And this is really especially helpful to differentiate K-3 from K-4 ambulators. Two minute walk tests, again, as the name states, you're walking, having them walk two minutes and measuring how far they walk. The MDC is 34 meters, has the test-retest reliability isn't as good. If intra-class correlation coefficient is 0.83, but this can be helpful to differentiate between K-2 and K-3 ambulators. And there is an equation to convert two minute walk test to a six minute walk test distance, if you're so inclined. So to perform these tests, ideally you have a 12 meter hallway stopwatch, a measuring wheel to measure how far they walk. Markings indicate where to turn and a chair if they need to sit down and have a rest during it, but the timer is still going. And understandably, it takes less than 10 minutes to perform these tests. If you have the time, the six minute walk test certainly has better test-retest reliability, but if you're crunched and you're okay with the reliability of the two minute walk test, that may be a better option for you. Lastly, the box and block test for our upper limb prosthesis users. This measures the number of blocks the individual can pick up and move in 60 seconds. The MDC is 6.49. There's no floor ceiling effect, which is a good alternative for the BAMULA. The equipment is a purchase kit. So it's a box, blocks, and a stopwatch. Takes two to five minutes to perform because you'd have to set it up, time a minute, and then count, and then clean up afterwards. So here's some ideas for how to use some of these in a clinical setting. For lower limb loss patients, someone who has a new amputation, it can be useful to do the AmpNoPro at that time. So you see as another tool to help with prognostication and developing your plan. For prosthesis users, you can use the PlusM, for example, as your subjective measure and a two or six-minute walk test as your performance-based measure. And those are fairly easy to do, say, at every clinic visit, assuming you have the space and the staff to do it. And then if someone is a prosthesis user and they need a reevaluation, either they're making significant progress or something's happened and they're not functioning as well, you could consider doing the AmpPro or the CHAMP to get a better, to get a new sense of how they're doing. For upper limb loss patients, the QuickDash can be used for all these patients to see how they're functioning. And for prosthesis users, you may want to do the BAMULA or the box-and-block test periodically just to have that performance-based measure to keep track of how they're doing. Ideally, you would have a quality-of-life measure, whatever you choose. So that way, we're assessing people's quality of life even if they're not using a prosthesis. So looking forward to the future of outcome measures, there's continued work in assessing the utility of commonly used measures for individual comparison, specifically for the limb loss population. And it would be great if we had some more of this data for quality-of-life measures so we can continue to monitor, especially our non-prosthesis users. And then there's continued work on developing and studying the upper limb loss-specific measures. So in summary, there are more limb loss-specific measures for people with lower-than-upper limb loss. There are a few measures have been studied such that we can use them for individual comparison and have an MDC to use to monitor their function over time. Both self-reported and performance-based outcome measures are a purpose, and you ultimately have to decide the space, time, equipment, and training you're gonna dedicate and pick measures accordingly. So with that. Thank you. Are there any questions? We'll be happy to pick from the chat box, or if you wanna unmute yourself and ask the question directly, feel free to do so. Yeah, hi. I did put it in the chat box as well. This is Nandita Kiyoli. I work at a VA. And my question is, are these outcome measures free and easy to obtain? Because a lot of times to make it easy, we have to sort of make it into a template in our EMR so that they can be checkboxed. Yeah. So some of these are free. Like I know the PLOSM specifically, it's free. But to be honest, I did not check all of the measures to see how many of them you have to pay for or versus are free. With the box-and-block test, you have to buy the kit. But that's a good point. I know that the PLOSM specifically has been built, for people who use Epic, it's been built into the EMR at some locations. Yeah. And the amputee mobile is also online available. Forgot about that one. So those are a few that can get you started. I think the biggest hurdle for the upper limb is all the equipment that is needed. Yes. That makes those tests a lot more complicated. Yes. And having someone who's skilled in doing it and having the space to set up. So Kristen Caldera is asking, are you having PT do these before or after they're sitting in clinic? Having a hard time thinking of a clinic flow, though I do have a prosthetist and PT in clinic with me. So how we've been doing it is the, if I have a new amputee that's coming into clinic, I have them, they get evaluated by a physical therapist before the visit with me. Before the pandemic, it was happening immediately before the clinic visit. And so the physical therapist would then do the amp, no pro or pro depending on the situation for my lower limb loss patients. And then for all of my prosthesis users who with lower limb loss, they were given a plus M to fill out before I went in to see them. And so that's how we were incorporating it. I've been in other places as well, where a physical therapist administer the plus M and perform the two minute walk test in the hallway immediately prior to the visit. Yeah, I think we have different models. We've trialed at one of our sites, the concurrent PT and physiatry evaluation. So we schedule longer visits and stagger with follow-ups. So the patient is seen by physiatry and then there's time for the therapist to do some of these outcome measures while perhaps physiatry moves on to see a follow-up patient. And then we circle back with those measures. So there's several ways that this could be done and still maintain efficiently because we know that we all need to keep things moving. For sure. Any other questions? If not, thank you, Dr. Kessler for that great presentation. And we'll be moving on to our last but not least portion of the program, which is our prosthetic forum. And for this portion of the program, we have invited some guests that I'm hoping you'll enjoy their presentation. First, I would like to introduce to you Professor Andrew Rubin, who is a professor in Georgetown University. I'll let him give you some details about that. He joins us not just because of his great expertise, but also because he does have a trans-radial and a trans-tibial amputation. So he can help us understand from a patient perspective how it is to use these devices. And then his prosthetist is also joining us. That's Mark Hopkins, who is a physical therapist and a certified prosthetist, orthotist, who has been working with Andrew. And yours truly as his physiatrist. So we will start, we'll let Andrew kick us off so we can hear a little bit about his story and how he has moved through getting his prosthesis. Thank you very much. It's a pleasure to be here. And I never realized that my background in English and comparative literature would actually have any bearing on this until I had my amputation in 2016. But before I get into that, I'll just briefly summarize my rather epic medical history. In 2000, about 17 years ago, as a result of, I was in septic shock and multi-organ dysfunction as a result of a medical misadventure with my femoral artery was punctured by a swan gans in order to attempt to get access. I developed compartment syndrome that was unresolved in the right leg and front two compartments. Subsequently, I developed compartment syndrome in the right arm with another medical misadventure in the right arm with the PICC line. The right leg and right arm were, the right hand was paralyzed. The right arm, the right leg was mostly ischemic. I salvaged the wound, we salvaged the leg and I learned wound care and it's basically saved my leg for about 15 years. But after that, about a certain amount of time, I realized that even wound care was not going to restore my leg. And I went to see an orthopedic surgeon. And he said to me, it was very, it had a profound effect on me. He said, Andrew, do not think of it as an amputation. Think of what you're having as an ablation. Well, that was the perfect thing to tell an English professor, because I immediately realized that it wasn't just an ablation, but I could see it as a kind of replacement. And after the amputation, after the ablation, it was an enormous success. I decided a year later to have the right hand, which was completely paralyzed and without any sensation, without function, to have that replaced as well or removed. And that has been a little bit more of obviously a technical challenge because of the complexity of the hand, but at least I have oppositional movement, and it's been a very revealing and rewarding experience, actually, ironically, to actually have been working with you and to regain the functions I'd lost about 18 years ago. I guess the one thing I wanted to share with you, I think, before we can discuss this, is that one of the things I've realized as a patient, and as someone who has 17 years of subjective medical experience, is that language played an enormous role in the way we understand prosthetic innovation and development. For me, as I mentioned, just the way in which the procedure itself was discussed as an ablation rather than as an amputation, the way in which it was, as I was working with wound care physicians, the way in which the attempt, the failed attempt to actually heal a wound that was on the bottom of my foot was seen as a failure. And I was going in that now, that idea that it was somehow a failure when I could actually regain function with the prosthesis that I had lost, a function that I'd lost 17 years ago, was something not realized after the fact. This obviously does not apply to everybody, but it allowed me to develop a better understanding and a certain kind of perspective on prosthetic innovation development and the way we talk about it. In an earlier breakout room, there was some discussion, for example, of someone that was asking the question, how does one develop a upper body prosthetic for a young boy or someone who wants to play video games? Well, one of the things I realized very quickly was that with using a myoelectric hand was that I type a lot and I write a lot and there's mouse grips on the myoelectric hands. And since the hand I realized is controlled by Bluetooth, I said, well, why not? Let's not think of it as a hand. Let's think of it as a device, let's say dexterity device. And the hand itself is mouse because it can communicate via Bluetooth. So there's ways of thinking about prosthetic development and the ways in which language impedes or incapacitates or limits our ability to understand the technological potential of certain forms of innovation. And it's been a pleasure to develop a collaborative relationship with you when working together on sort of refurbishing things. Anyway, I'm happy this is a forum so I don't want to speak too much and I'm the professor so I am prone to speak too much. So I will, I think we get at that and we can discuss it from there if you'd like. So Mark, can you talk a little bit with us about meeting Andrew and getting him through getting first his trans-tibial prosthesis and then his arm prosthesis? Sure, so I think the point that I'd like to highlight I think is the most important in Andrew's case and in the way we practice at Hopkins is that the multidisciplinary team and using a shared decision-making model is critical. Really can't say that enough. I know that we've talked a lot about multidisciplinary team but Andrew's case just really points to the fact that we needed multiple brains and skill sets and we need to circle back to that on a regular basis. And I think the important point for Andrew's case was that he was very involved in his care from the very start. And it was easier with Andrew than it might be with some other clients because he's very well-educated. He's very passionate about his own health care. And so he took an active role and he was, as we say in rehab, he was activated. So he took lead and helped us decide what was the appropriate set of goals for him and for his life. And I think that his care over the years has been a real model that we've tried to develop for all of our patients. Starting with the trans-tibial amputation and making decisions about all the typical things, socket, suspension, whether to fit with the preparatory first, when to fit the preparatory, how to do compression therapy, all those questions get answered. And it's all the things that we do every day as health care providers for persons with limb loss. But then you start adding on things and you add on contralateral knee osteoarthritis. Pardon me, Andrew, if I bring in a few of your other medical history, which brings in a whole nother level of complication for basic things like the height of the prosthesis. If Andrew's unable to extend his knee fully in standing, the height is variable. So that has to be adjusted on a regular basis, which requires componentry on the prosthesis that allows for height adjustments that are not reconstructing the prosthesis on a regular basis. Once the right hand was removed, that brings up questions of, well, what assistive device do we then use? How do we modify the walker with the platform? So that involves heavily the getting the physical and occupational therapist, in that case, both of them involved. And we talk about a very specific role in our model, and that's the functional assessor. And in our case, it's usually the physical and occupational therapist, physical therapist for the lower extremity in general and occupational therapist for the upper extremity in general. We're doing a lot of the physical tests and performance measures that the physician then relies on to set medical justification. And then I rely on the prosthetist to help me figure out where are we headed with this patient in terms of functional potential long-term. So it's a very layered on approach. We've gone back as a team using the shared decision-making model for all kinds of questions, different types of multi-articular hands. And I think Andrew's been through at least two or three of them, whether we're gonna go from two site direct myoelectric control to considering pattern recognition or advanced myoelectric pain control. Those are big questions. I would not wanna make those decisions on my own as the prosthetist. I would not wanna make them even with a well-informed patient without the input from the physician and the other members of the team. In that case, definitely the occupational therapist doing pre-fitting training. And that takes a very special person. If you have an occupational therapist who is skilled to do a pre-fitting evaluation and to do pre-fitting pattern recognition training, hold on to them for dear life because they are one in a million. So if you can build that kind of a team, it's really, in my experience over 30 years at Hopkins, it's important to develop the communication and the tools, even in pandemic times of using virtual methods to keep together. So we have been doing all sorts of hybrid models. For example, we have patients come to the prosthetist office and then connecting with the physician through virtual technology to run a multidisciplinary face-to-face visit. So with Andrew, we've done all of these things. And I think Andrew's case just is a perfect highlight of how the team is critical and you need to take the team one step further. We really do need to integrate all of the things we talk about, the ability to refer out to surgical consult, the ability to do routine tests and measures, and we'll go back on them on a regular basis, the ability to make big decisions, informing the patient and the patient's family of all the information that's available. And I don't think we've done enough on that last point. There has been some research looking at shared decision-making model on prosthetics using very specific educational tools. And as we start talking more and more about very complex issues like osseointegration, targeted motor reinnervation, and other types of surgical interventions or robotic prostheses, even just the question of mechanical versus microprocessor-controlled needs, those kinds of things cannot be done in a vacuum or with limited educational materials. We just really have to do a better job producing the right resources so that we can bridge what the economists call the asymmetry of information, the gap, so that patients can make informed decisions. So there's lots to talk about with Andrew's case. I don't want to monopolize, and I'll get off my soapbox on multidisciplinary shared decision-making team, but I'm very pleased to have this forum to bring those topics up because I think there's a ton of work to be done. And I'll let Dr. Gonzalez pick up from there, if she would. Yeah, thank you, Mark. I think it's a great segue that you were talking about the information gap. And I feel like that is really important and it's part of what we are called to do as physicians and specifically as physiatrists is to work to bring all those pieces together so that our patients are well-informed. So we were very fortunate that when Andrew got to our clinic, he had already had visits with surgeons who had given him the correct information. And I don't say that lightly. Sometimes the expertise that people have on amputations and limb loss is not ideal. So we had that advantage, and we had the advantage of being able to have these conversations before the amputations happened. And that's one pearl that I would like to share with you. If you can develop relationships with your surgical counterparts, those can be invaluable to help patients move through the process of losing a limb and obtaining a prosthesis. So we could have meaningful conversations as to what options were and what the process entailed, have both therapy and the prosthetist present, who could actually help us work to develop a comprehensive plan of care as we move forward. Interestingly enough, again, when we had those first conversations, it was evident that there were functional deficits in his arm, his hand as well. But interestingly, at that point, the compensation was sufficient for his functional needs. So that was put aside because it was sufficient at the time. And after he had the trans-tibial amputation, some other problems started happening. And then the hand, at that point, became something that was, instead of an aid, was something that was in his way. And that's where some decisions were made to proceed with a wrist disarticulation transfusion. You're at wrist disarticulation. I'm at wrist disarticulation, right, yes. I'm sorry. I wanted to be a trans-radio right before the surgery. I need more, we need more room. No one's ever told me where to do this before. But yes, yes. Yeah, I always get confused because we went back and forth so many times with the surgeon to decide whether you wanted a wrist disarticulation or if we should go trans-radio. So at the end, it was a wrist disarticulation that has been very helpful for him with suspension of the device and so forth. So I think that perhaps the biggest take-home point we have is trying to build a team that actually can work on all the different components of fitting someone who has lost a limb. And it's a complex process. And one part that I would like to highlight that we don't have someone here today is that we cannot leave to the side the potential impact that adjusting to losing a limb can have on a person psychologically. So we have rehabilitation psychologists that help us work on that side as well, depending on the needs of the patients. So that's something that should not be forgotten. And with that, I really like us to use this time to ask questions, to bounce ideas and to discuss some of the questions that might have come up from some of our breakout sessions and other forums. We appreciate that you've been here. So feel free to either use the raise hand function or the chat room to ask questions. Or if you want to unmute yourself and ask the question directly, feel free to do that as well. So let me see, I see a question. It says, from the phantom limb pain talk, it says, what is your experience with mirror therapy and virtual reality mirror therapy? So Dr. So. Mirror therapy has been a great tool for treating phantom limb pain. So the way it works is that there's mirror neurons. And so if we're trying to activate the limb that is missing, that motor signal is missing and or the motor endpoint is missing. And so it kind of just terminates there. There are these things called mirror neurons that are really about your visual perception to, I guess, empathetically feel what would happen. So for instance, if someone slams their finger in a door, you kind of wince because you feel their pain, even though you yourself aren't experiencing that pain. And that's a phenomenon of those mirror neurons. And so through neuroplasticity, mirror therapy kind of helps trick the brain with that visualization of activating that mirror neurons to maintain that somatosensory cortex. And so in that way, it can be beneficial. I think the really interesting part with virtual reality is that that's kind of how technology is pushing us. You know, at my facility, we specifically don't have anything related virtual reality. A lot of centers do, the OOD centers do. But I think the interesting part is you can activate those mirror neurons. I think that there is better prosthesis embodiment when you're using virtual reality. There's a lot of gaming that's actually going on right now, gaming technology for specifically the rehabilitation following, and so using virtual reality. And so, you know, those movements, so instead of kind of doing the, and again, this is kind of some limitations, but you know, if life in the upper limb is not, you know, kind of this, there's a lot, you know, you got to take something off the shelf, put it in the cart. You got to, you know, you're talking about your functional envelope opening up. And so a lot of the virtual reality gaming is actually trying to look at those functional movements in a gaming situation for that pattern motor development, and specifically for that full prosthesis embodiment. So I think I answered the question, but if not, please, you know, unmute and clarify. No, I think that's a great answer. I think that from what we were talking just before, Dr. So answered the question. I wonder in this group, how many people have the availability of a team? So we're going to poll you all. So the question is, who sees the patients with limb loss in your clinic? So let's see. Is that physiatry alone, physiatry of prosthetists, physiatrist, prosthetist, and PT? Ooh, it's moving very quickly. I don't know if you guys can see the, can you guys see how the answers are going, coming in? Perfect. No. Oh, so some do, some don't. So right now- I think I'm the host. Yeah, right now we have about 45% of people who have answered the poll have a full team with physiatry, prosthetist, PT, and OT. We'll leave it on. It's only been there 38 seconds. So we'll leave it for a full minute to allow folks to respond where they can. So then the next more common is having physiatry and prosthetists. 27% physiatry alone, about 20%. And then we have other, other combinations for about 7%. We're a large enough group. So actually with 56% of the people responding, it's been quite stable. That's the beauty of large sample sizes for those of us that like to do research. We have a pretty large sample size. So it's encouraging to see that the vast majority of us, you know, 45% have physiatry, prosthetists, and physical and occupational, or occupational therapy. And at least another 26% have at least physiatry and prosthetists present. One that we didn't include was PM&R and therapists only, and not prosthetists. And so that's maybe that other category. Yeah, that might fit in that other category. So it's encouraging to see that, you know, as this core to our specialty, we thrive in team environments and this is not the exception. So that is, that is great. I will share the results again. Okay, so let's see, we can go back to some of the questions. So some questions that are associated with the pediatrics group, says at what age do you tend to transition to a knee unit, pylon to a manual locking? Right, so as the pediatric patients gain enough length, so it usually takes at least about two and a half inches distal to the residual limb to add a knee on. Once they get enough length for that, then we can start adding one on. Initially it's used for whenever they're sitting in say a car, so they can sit down without hitting the chair in front of them. If they don't have something like that on, then they have to take the prosthesis off to transition from outdoors to in the car or anything along those lines. Once they get to a place where they cognitively can understand what the prosthesis is doing for them around the age of six or seven, where they both have a cognitive reason to use the knee and they have that length, then they can start using one in gate. But we generally set it up a little bit safer to start with just so they have to think about using it and it has less falls that way. So a question that I think applies to children and arms, but perhaps for other providers is question on 3D printing. Like what are the thoughts? And we have several prosthetists here, so it'll be interesting to hear several opinions on the thoughts on 3D printing for a more custom fit. Right. So I'll jump in on it first, just because I think it came up during the pediatric 3D printing is really valuable and it's moving in a good direction. A lot of the things that are out there now are 3D printing for you can have a monolith, just a socket connected to a foot. It's used for more of a water leg or anything along those lines in the lower limb. You can 3D print different materials. They're starting to use it for, you can have a flexible inner socket with 3D printed materials. So it's moving in a good direction. In the upper limb space, at least in the pediatrics, it tends to be more of a show and tell item because with the current durability in 3D printed materials, kids will break it within a week or two of using it. So it's not quite there, but it's definitely moving in a good direction. I'd be interested to hear what other prosthetists have to say. And just to finish on the pediatric portion of it, it's not just usage of materials. Most of our patients are congenital limb differences and they've already known how to do bimanual activities very efficiently most of the time. So sometimes these devices don't necessarily bring additional function. So as Jeremy mentioned, if they get it, they bring it to show and tell, it's pretty cool. It looks like Iron Man, et cetera, but it not necessarily translates into daily usage and incorporating it in a functional aspect. And the other thing is that a lot of these designs are, you put measurements, but they're just the same design for everybody. And at least for me, a device tends to, it should be used as a tool. And sometimes just one device that fits, that has that fit for all, like one size fit all, doesn't necessarily translate well into individuals and their lives. I'll take a shot at the 3D printing. I think that I agree with the comments so far, and I do think 3D printing has real potential in prosthetics and in orthotics, but I think it's really just one part of digital workflow. And I think the real advantage of the digital workflow is the entire system from digital scanning, 3D three-dimensional scanning of body segments to computer-assisted design for modification and the ability to move forward and backward in designs. And then in the end, yes, producing something in a digital format, whether it's 3D printing or any other digital format. The goal here, I think, is to reduce the labor costs of the iterative approach that we take in prosthetics and orthotics so that people can have multiple options so that you can see differences. And this is one of my personal interests is to measure limb change over time very specifically using digital scanning technology. And then also to be able to perhaps provide patients with more than one socket fit during a fitting process, even on the same day. So that you would have different sizes of sockets or different designs of sockets. And they're relatively inexpensive because they were produced in a relatively inexpensive workflow. So I think 3D printing is really one part of a larger digital workflow that has real potential going forward in both prosthetics and orthotics. Great, thank you, Mark. Ray has a question. I see a raised hand. Feel free to unmute yourself. Ray? Ray? We'll come back to you if you're having some technical issues. So in the billing section, in the session, someone asked with regard to the letter of medical necessity, we as a physician write the original script and then review and sign the detailed script from the prosthetist as letter of necessity. So do other people have different ways of scrutinizing for appropriate codes? Or, and then someone also wondered if the Academy could provide a resource to learn more about the codes and how to best prevent inappropriate coding. So on the second part, I think it's a great suggestion and it's something that perhaps even this community, we could partner with AFM on R2, make something like that happen, get a more detailed session on L coding and how to make sure that we prevent misuse. Again, this is an area where the technology can get quite expensive. And we wanna make sure that the patients that can benefit from the expensive technology can get it. And that also means that the ones that do not need it, that need some more simple devices, we use those devices and that we prevent fraud. So that would be quite informative, I think for all of us to do that. One thing that we do is kind of vet our partners beforehand and that has been a helpful strategy for us to develop confidence that we are dealing with reputable prosthetic providers. Anyone else have some comments? Marlise, we just had a great comment posted by one of the attendees from Jared. One of the presenters, American Orthotic and Prosthetic Association, AOPA, has an illustrated coding guide. It's a great resource for any office. That's a great suggestion, Jared, because what we talked about in our session on billing is that using the vendor websites can often mislead one to believe that they are using the right codes, but coming back to a national association or the CMS guidelines will usually help you to clarify the right L code to be used. Yeah, and as Noel mentioned also in the chat, that parallels there, that recurrent topic of insurance rejection of prosthesis, payments, and prescriptions, and having to do peer-to-peer, peer-to-peers to make sure that we can get that device for our patients, which we all know that it's challenging and it takes a lot of time and effort, which we are happy to do for our patients, but if we can prevent the insurance from getting to the point that they request a peer-to-peer, if we can be proactive and give them the evidence that's needed, that the device that we are recommending is the appropriate one for these particular circumstances, that would be very helpful. So we'll take notes on all this. This is very helpful as we move forward. You know, one topic that I think is interesting, which perhaps I'll ask Andrew to chime in, is in the same vein, looking at advanced technology. I would be interested in you talking to us a little bit about your experience with getting kind of on research studies to look at advanced devices and then getting those devices, and how do you think that has had an impact on your prosthetic fitting? Right, I mean, I've been fortunate to be, first of all, being in Washington, D.C. has allowed me to, in a proactive way, get involved in, for example, a study that they were doing on the Empower Ankle at Walter Reed, and even though I'm not a vet and hadn't served, was permitted to, they needed other people in the study to demonstrate to Medicare that the foot had reduced the metabolic cost. And I did have one comment about that, and that was an unfortunate realization, was that it does, the Empower Foot, which is right here, which is the Powered Ankle, does absolutely reduce the metabolic cost, but it's quite heavy, and which I found out was discovered was a bit of an, I realized, unfortunately, at one point, was quite extreme, walking side to side, and the foot is just about 20 pounds or so, and it was an unhappy realization how, what a challenge that was, and I realized I should take the battery out to lighten the load, if you will. The technology, it's been a real pleasure to be part of and to share my perspective with developers, biomedical engineers at Hopkins, and in ways that, because of the unusual nature of the injury and the timing of the removal, the risk disarticulation, for example, we had, one of the things that was, became, we had, I first saw a neurologist to see if I actually had any, the ability to control a myoelectric hand, and the neurologist didn't really have much of a knowledge of what a myoelectric hand was and how a direct control or pattern recognition control worked, and he said, well, I'm sorry, it looks like that signal is just noise. I mean, I hadn't used the hand, this was before the amputation, I hadn't, he's asked me to use my, try to move my hand, which I couldn't, and he said, well, that's just, that's mere noise, the EMG, and Mark and I then realized that that noise was actually, could be leveraged, and we could use that so-called noise and turn it into music, if you will. It wasn't a typical EMG signal, but it was still a signal that one could turn on and off, not in the usual way, but it was a way in which, and that's, I think, getting back to the multidisciplinary approach was something that wouldn't have happened otherwise. And that led me to discover and to seek out other kinds of solutions. For example, work on the use of ultrasound to control a myo-electric, to control a multi-articulating hand, which in my case, because of the, because of severe atrophy and fibrosis of the form, was very difficult for me to produce anything other than a co-contraction. So it was very, and the pattern recognition still given me is viable, but what I realized in participating in one study was that the use of ultrasound to power a hand where I was able to get in the lab at least nine degrees of freedom virtually within about an hour worth of training. Now, the question is fabrication. How do you get the probe inside the arm, which is something where they're still working on. But this has, you know, there's ways in which it's, this being part of this multidisciplinary approach has opened up certain opportunities for me that wouldn't have, I would have not have been available to me. One of the things, for example, I realized with the Empower Ankle was that it was actually of enormous rehabilitative uses. It could actually teach you to walk better in the early stages of learning how to walk and was helping me develop muscles that I had atrophied over the years and engaging them in other ways. And then open, you know, beginning to think about different ways in which one could use that foot, which is controlled by an application. You can change various settings and that allowed one to discover, well, it doesn't, you can use feet and feet, I put in quotation marks, it was a metaphor again, in different kinds of ways that are unusual. And this has been exciting for me and empowering, pardon the pun. But, you know, so that has been something that has been, one of the things also, this is getting back to something Dr. So's lecture was that I participated in a study on the use of E-Derm, which is developing a prosthetic hand that feels. And I was very skeptical of that. I was like, I really don't need feeling, I just need function, please, just give me function. You know, it might be a blessing that this hand, that the prosthetic hand doesn't feel in a sense. But I was working with a biomedical engineering graduate student who then went on to work at the Applied Physics Lab. We'd worked together on this, you know, that was the subject. And I realized after some, after a few trials, that the stimulation, sensory stimulation, where I was trying to develop the, he was trying to map out the different, the sites where we'd have feeling, feeling this, the, that, thinking about the different sensory, thinking about the phantom limb, the hand, and the sensation actually improved my motor ability, surprisingly enough, which had been very weak because of the years and years of this lack of use I didn't have. And for whatever reason, it had a positive, very positive effect on allowing me to get better control of my patterns when using pattern recognition because it gave me a greater awareness of the hand, which would, as we were doing this, would suddenly, like an Escher sketch, suddenly appear and disappear as we were doing this and allowed me to develop better, more, produce more consistent and distinct signals with, in my form when I was using the pattern recognition. So it's been a very interesting journey in that respect. Yeah, when we look at the technologies and how they've had an impact, I think it's been very helpful and educational for us as well, your willingness to volunteer and try new things and be part of these protocols because we've learned a lot from all that. And it's surprising and it's not to hear about the effect of having some sensation, some sensory input. And we're learning more and more about that. I have one of our patients who was one of our most successful transfemoral osteonegretal integration patients. And we discussed, we were talking about how well he's walking yesterday. And the most interesting part he said of the whole thing, I said, you know, how is this going? You're doing well. He's just got his prosthesis within the last month and he was walking fantastic. And he said, no, but the most surprising and the nicest thing is that I can tell if I'm standing on grass or in hard surface or in other environments. And the value of that, again, it might not be evident early on, but we've starting to understand so many benefits from that sensation that we would otherwise ignore. You know, we all thought about hands and having sensation from hands and for lower limb, it has been on the side. And now that we are getting more and more patients, especially civilians versus military men or women in the community, we've seen the great advantage that having sensation. So that osteoperception, which is what we're calling for patients with osteointegration implants is probably one of the things that anecdotally I hear the most as one of the great advantages of having that procedure. Great. A little bit more to that with the sensation they showed in the upper limb, kind of more gate lab for the upper limb that when you turn that sensation on, when you do that box and blocks test or even kind of something with a little bit more of a functional envelope, you actually don't change your gaze as much and your pupil size isn't as dilated demonstrating the sympathetic activation for mental fatigue of doing a task. The other thing that they're showing is that when that sensation's turned on, you're not doing kind of these additional movements with your rotator cuff or twisting or whatnot. You're able to actually move in a more functional pattern to reduce overuse injuries. And so I think that, as we know, the sensation part to prosthesis use is gonna be probably an avenue where there's gonna be a lot more development, hopefully. Right. To comment on that, we're talking about virtual, the value of virtual training. And I trained quite some time with a virtual hand to develop that. And when I went to the myoelectric hand, first of all, I was startled because the response time was so much quicker, much faster, because it was no longer wireless. It was direct. And I was like, whoa, the hand's moving really quickly. And then secondly, it made a noise. The hand, you could hear the hand open and close, which was also, and they're different frequencies. So you can hear, I can tell when the hand's opening, I can tell when it closes. And so you should add noise to the virtual hand. So there's little things like that that were sort of, from a start, who would have thought that there would have been a difference between operating a hand virtually rather than directly, would have made so much difference. But it did, in strange ways. I'm glad you brought up the noise part because we're dealing with the osseointegrated implants. Bone conducts sound. And so you can actually hear, your brain is processing sound through that osseointegrated implant. And so that's kind of another way that your body is kind of perceiving the prosthesis as your own limb. And then interestingly, when you're talking about the sound, there's a group up in New Brunswick that's specifically trying to develop the auditory feedback for that quicker response time for these myoelectric components. And so they would train folks with kind of that EMG sort of tuning fork type of signal. And when I was talking to them, I said, gosh, you really should get away from the tonal part and really work at that transition point between the EMG signals, because that would be the base, which is primary motor cortex. And so I think even understanding how we can take some of the information we already know with neuro rehab and neuroplastic functional neuroanatomy and how we can use that to really make that connection. Right, yeah, that was so important. Just when I was training with the pattern recognition system and trying on the different eight channels, trying to figure out what contractions would produce distinct signals, I'm looking at eight different channels and this is visual. I'm like, well, why don't you create a sound instead of that? So because the transition from actually visualizing that to calibrating it when I would close my eyes and try to do it, it was very interesting to see I was not, the signals were over amplified or under amplified, but trying different ways of actually producing more feedback that was useful. Thank you for that. I think it's extremely exciting to hear this context. One of the things that I wanna bring to the group though, being a pediatric provider and taking care of patients, special patient populations as well, is that with all these advances in technology and equipment, I think as a group, we need to start thinking of equity because I think as the technology moves forward, there are significant populations that are at higher risk of limb losses that still don't have access to simple devices. And as we continue to move forward this technology in more advanced potential interventions, we need to be careful of cherry picking our patients and not being able to provide resources for the patients that for all the patients that would benefit and actually take more advantage of these. So just wanted to bring that out. I think that's a great point because that's really what we want. We want the device to be matched to the patient's needs and abilities and the other things should not play a big role in that context. We want to make sure we're mindful of other factors, but our primary responsibility is to the patient and their needs. And advocating for the patients and trying to circumvent those challenges is really important. And as providers, we need to be mindful of the language that we use. I know that it can be quite easy or easier to have patients that are very vocal of what they need, but sometimes we need to guide that. At the same time, especially with the pediatric patient population and some of our other patients, we don't want to take an ableist perspective on trying to just make things typical, as typical as possible, and not allowing the patient to explore the environment and to adapt. So it is a very fine balance of which language we use, how do we support and explore the goals with them if they don't have the language to present to us back, thinking about what devices would work better in their environment and what therapeutic interventions will be needed to get there as well and try to be a little bit more deliberate in how we diffuse that with all our patient population. Yeah, thank you. Great comments for sure. We're kind of getting close to wrapping up the session. And before we close, I would like us to get to know all this group better. It's very exciting. We've had, since very early in the session, around 170 participants. So we are very, very pleased that you all have decided to give up two and a half, three hours of your time to join us and to create a learning environment for all of us involved. So thank you for joining us. And we would like to know what practice you're in. So if you can, please, I just sent you guys another poll. Where do you typically practice? Is the first of a few questions that we will have. Let's see. This is great. We have a great mix of folks. We have about half of the people have responded to the poll. You know more of that, we'll give some time. It's very interesting. It seems like with this size of group, once we get to more than 50% of the answers, even if the other answers are coming, the percentages stay quite stable. So we have a great mix. You know, a third of people are in a private group practice hospital healthcare system. About another third are in an academic environment. And we have folks from private solo practices, from the VA, from a combination of these or others, which is great because I think that we need more and more folks that are treating this particular population. So I'll end that poll and we'll move to the next one because now we know where you guys are. I mean, what kind of, let's see. So next question. So we want to actually then know how much of the care you provide is amputees. If you can, please start with that. So I do, so I work at the VA and I came from the private practice model where everyone's kind of my patient once they're my patient. And so I take care of all their, even at my amputees, like MSK needs or whatnot. If they're having zero problems with their prosthesis, but they got a rotator cuff issue going on and they want an injection, I'll take care of that. I spend approximately about $2,000 a month and probably about 50%, 45, 50% clinically. I have a lot of administrative roles. And then I also am the traumatic brain injury medical director as well at the VA. Yeah, so it looks like that's representative of what our participants are. We've gotten most of the answers. So 89% of people who are here in this session have zero to 25% practice. That's 89% of responders have about 25%, which is great because I feel like these concessions can help folks whose practice do not concentrate primarily on this population and what could be important. And then the others are negligible is the higher percentages. So that is quite interesting to understand. Again, those, they are your results. So 89% of us in this session have about 25% of practice. And then let's see, a couple more questions for you folks. So do you care for upper limb loss is the next question. Not lost for a difference in my case, right? Yeah. Okay. So it seems like a good proportion of us take care of upper limb loss, people with upper limb amputations. So about 60% so far. One of the things that has been interesting to me as an ipsilateral amputee, the trans-tibial and this articulation is the cross fertilization between the upper and lower. And the way that I found that knowledge can actually be transferred and translated that has not necessarily, that can actually allow us to develop other ways of control and so on. Yeah, absolutely. Yeah. Yeah, yeah. No question about that. We tend to separate it way too much, I think, in my opinion. Last question, how many people here care for pediatric patients with limb loss? That was quick, everyone answered quickly. So we have about 74 people. 83% do not take care of children with amputations, but about 15 people do. So that's a pretty good number, for sure, folks who take care of that. So we'll make sure that some of those topics are included. And I think a better question will be to discuss about childhood onset. You may not take care of someone of pediatric age, but they may have a congenital difference, or they had a loss during their childhood, and it requires some special considerations as a provider. Yeah, absolutely. OK, so that is great. That is bringing us very close to the end of the session. We have a couple of minutes. Any outstanding questions, anything that we can't? Certainly feel free to unmute yourselves if you want to. Marlies, I think there was a question in the groups and in the box here in the chat about upper extremity differences and my electric usage in kids. Yeah, go ahead. Well, personally, I don't have a lot of experience because most of my prosthetic management is done at Shriners, and we don't provide my electric prosthesis. A lot of my patients are very, actually, a lot of my patients actually don't even use prosthesis unless it's for a very specific activity. But I know that Jeremy's here, and I love Dr. Scott Weyard is here as well, and she also has significant pediatric prosthetic management experience, maybe more than me. So I don't know if she can unmute herself and chime in. Sure. This is Phoebe Scott Weyard. So I think what I typically do in these patients is similar to any patient when you're addressing. It was a fantastic talk that we had on upper extremity prosthesis. We sit down and talk about what are the goals, et cetera. I like to have patients be in established body-powered wear, similar to the adult situation, and show that they have consistency with wearing it and consistency with, hopefully, attending occupational therapy sessions. And then once they've established that, then I would be willing to write a prescription, have them practice, do some myo-training with OT in combination with their prosthetist and see if that's the right option for them. It's definitely difficult with some of my smaller patients who have very short residual limbs. So for example, a below elbow that's very short. In an adult, they can often compensate for the weight of a myoelectric prosthesis. But in a smaller child, that can be very difficult. So something else to consider. But I've typically, as long as they're in established body-powered wear, I've not had a problem getting it covered by insurance. I don't know if that answers the question. One thing that I would like to add, too, is that when we think of myoelectric for the pediatric patient, if you feel like your patient would benefit for such a device, we often make the association with myoelectric that they would be using maybe a single or dual site control. But you could also consider a linear transducer for your patient, which I'd be curious what Jeremy has to say. But in my limited pediatric myoelectric experience, we used linear transducers for just a single degree of freedom hand. And that was successful. But again, there has to be at least that cognitive level at which they can understand the general usage. Thank you. So we've. I was just going to say, for those who didn't know, a linear transducer is just taking a typical body-powered harness and adding that in to basically adapt it to myoelectric. And that can work. I think the most important thing, if I can just piggyback for 30 seconds, is with these pediatric patients and upper limb myoelectric prostheses is to manage their expectations. A lot of our kids come in and they expect an arm like they see in Star Wars or whatever the newest thing is. And they need to know what it can do for them and what it can't do for them. So if they're coming in expecting that it's going to help them play their Xbox, that's great. But it most likely isn't going to. So you need to have that conversation with them. We had patients who wanted to use it to take a selfie. Well, there's other ways to do that. You can put a whistle camera on your iPhone. There's an app, so you whistle and it takes a shot. So they need to know what it can do for them and what it can't. So that's the most important thing. Yeah, typically at the ages that they come, they still have a lot of magical thinking. So they truly think that their prosthetic myoelectric hand is actually going to do everything that the typical hand would do. So most of the time, we actually need to explore what the expectations are. Sometimes there are significant body image issues with some of our patients when they come in because they've been quite functional for some time. So instead of a device, sometimes they actually need to be sent to behavioral psychology to talk about adjustment and body image issues, et cetera. We're not going to minimize the interest, but we need to talk about what truly the expectation is and come up with a good plan for them. That sounds great. This time and this forum has run by very incredibly quickly. Thank you, everyone, for joining us. I've put my email on the chat. Again, it's marlis, M-A-R-L-I-S at jhmi.edu. If you have outstanding questions, if you have topics that we would like us to discuss in the future, we would really want to hear from you. We had set time to do those discussions, but I think the clinical discussions have taken over, and that's great. So thank you for joining us. Feel free to reach out. We want to hear your feedback. We want to hear what we did well and what we should improve. So please keep in touch. And thank you very much. Goodbye.

language

multidisciplinary approach

prosthetic innovation

trans-radial amputation

trans-tibial amputation

ablation

patient involvement

shared decision-making

collaboration

treatment plans

myoelectric control

rehabilitation outcomes

limb loss

prosthetic devices