Okay, so hi everyone, I think a lot of y'all know me, Ekta Gupta, now Sharma, over at M.D. Anderson. So I have a complex case that I've been treating, really we've been following him since 2017, but I've been treating him really personally since 2022. And at M.D. Anderson, we initially only had Botox or Onobotulin Toxin A on formulary, and recently we added Dysport after a lot of loops. And so I wanted to kind of present this case and then hopefully get ideas or thoughts from everyone, if that's okay. So I think we can go to the next slide. So I'll start with the timeline. Sorry, next slide. So basically, when the patient first presented to me in 2022, this 58-year-old male, he had a history of right tonsillar squamous cell carcinoma, and he had accelerated IMRT with concurrent high-dose cisplatin. And he completed this actually in November 23, 2012, with no recurrence. So I was basically seeing this patient like 10 years later. His initial course after radiation, he had oral mucositis that year, he had dysphagia, eventually had the G-tube. 2013, G-tube had been removed, he had some lymphedema, and that had actually resolved by 2014. Then in 2014, he was diagnosed with radiation fibrosis. Radiation oncology actually talked to head and neck. They started doing speech therapy again, working on stretches. And a head and neck physician started doing Botox in July of 2014, with 60 units just to that right side where he had primarily been affected. And then over the next two years or so, he had worsening spasms, was referred to PMR in 2017. Next slide. And was seen by my colleague, who basically said at that point, continue, you know, the Botox with the head and neck team. And she recommended trying baclofen and integrative medicine. So head and neck team increases Botox, but then he was getting 100 units to the right of CM. The notes say posterior neck, I'm assuming they were doing his trap. He saw integrative medicine, but never actually did acupuncture or anything. And then, sorry, that's supposed to be 2018. By February of 2018, they had added the left SCM as well. So from what I can tell from the notes, he, you know, continues on with this for a couple of years. And then in 2022, he has worsening dysarthria and dysphagia, has the G-tube placed, his trial on pentoxifilane and vitamin E without improvement. Head and neck season and feels like his epiglottis is pretty scarred with limited motility, sorry, mobility, and he's having frequent aspirations. And they feel like he also has a radiation-related cranial neuropathy with burning cervicalis bilaterally, suggestive of nerve type pain. And he, at that point, had increased Botox and they've added in some of the platysma. And then he's referred to us, actually, for Botox plus a cervical root block. So next slide. So then we do the second consult, which Dr. Jessica Chang did with me. So she was, she and I saw this patient together for the first time. And he tells us about his spasms. Basically, they're happening all day long. He has severe spasms three to four times a day, right, greater than less. And you can see that everything is painful, right upper trachea, right anterior neck. He says there's a cramp symbol of his tongue, which stops his speech and is limiting that way. He feels like he can't breathe at times. He's seen outside pain, started on gabapentin with no real help because he feels too drowsy. So he doesn't want to take it while he's still working full time. He said he tried PT, they've done a bunch of different things, no relief. And he says he had done that Botox, like I talked about, with no worsening side effects. So he's interested in evaluation for Botox from us. This is also kind of around the time frame where our head and neck team stopped doing Botox and started transitioning all their patients to us. So on exam, he has decreased neck lateral rotation, flexion, flexion and extension. And then with neck flexion and chin tuck, you basically trigger these visible platysma spasms. So it was interesting. I hadn't seen that before where we could just trigger the platysma with movement. And he had right-sided torticollis. Of course, it was a virtual video consult due to COVID. So we recommended at that time, increasing his gabapentin, especially on weekends, and then increasing the Botox dose considering an antispasmodic. And then we did not do cervical root nerve box, but we said we could talk to pain team whether or not they could consider something. And then head and neck had already talked to speech therapy and he had a G2 place. So he had an alternative source of nutrition. So we were like, let's go with the Botox. So next slide. And then next slide. So May 9th, 2022, I started Botox. We'd started with 200 units, just did a tiny bit to his platysma, did more to the right SEM. And then we did his bilateral trapezius. At that time, he reported he had full resolution of spasms for the first six weeks. And then they slowly returned, but mostly with head rotation. So the next time in August, you can see that we kind of increased the dose a little bit, as well as I think we did one more spot in the SEM, which was really, I think, kind of a little bit of scaling. And then he said that time after the Botox, he had a headache and nausea, but an acute exacerbation of his cranial neuropathies, but it resolved in one day. And then six weeks later, when I saw him for follow-up, he said he had a hundred percent improvement in spasms with the increased dosing and adjustment to Botox. So I'm like, okay, this is working. So we go to the next slide. Then as I'm talking to him and started doing these follow-ups, he had an MBS at that time that revealed ongoing dysphagia, but he had improvement and he was started on therapeutic trials, water, which was great because he was really excited. He wanted to get back to being able to eat. And then pain team was able to see him. They took him off baclofen and gabapentin, started him on Norco and Valium. At some point he got an amitriptyline in November of 2022. So I did another dose of Botox in between there. They did a ganglion block with no significant relief except for a couple hours. Then later in December of 2022, they did a cervical spinal cord stimulator trial. And then he eventually had a cervical spinal cord stimulator placed in January of 2023. And he said he was sleeping a lot better. He had improvement in that burning cervicalgia type pain by about 50% and his spasms didn't really change. So we continued to do the Botox. He did have another aspiration pneumonia towards the beginning of 2023. And once again was placed at NPO with MBS follow-up. So next slide. You can see those are the dates that we did Botox in 2022 and then 2023. In August of 2023, I saw him in clinic. It's head and neck. So I never really took off his shirt entirely. And so one day he comes in, he takes off his shirt and he's like, hey, I want to show you something. And he basically moves his shoulders and you can just visibly see his serratus and rhomboids spasming away. And so I was like, okay, well, let's try to add this in. So we added it in. Eventually what we realized was he was working out a lot and he wasn't working out properly. So I had him go back to PT and learn which exercises to do for his shoulders for scapular range of motion. And eventually I was able to get away from that. But then towards the end of 2023, he's telling me, hey, I'm going to speech therapy, but they're telling me my trismus is getting worse. My jaw opening is decreasing. So we went ahead and added masseters for Botox at the end of 2023. And then the next slide just talks about some more of his medical issues. So like the baclofen was re-added. He started doing the speech therapy. We talked about the spinal cord stimulator. And then pain team is adjusting and trialing like medications up the wazoo. So if you go to the next slide, you can see, I continue with the Botox and I'll get back to the 20, 12, 30, 20, 24, because that's some of her most recent Botox in a later slide. And then as you can tell, I talk about the rhomboids because he's noticed some improvement with therapy. So if you go to the next slide, you can see his 2024 medical issues. It's like all over. He's having audiology issues. He starts having what we thought was BPPV. Turns out he has carotid sinus syndrome and he's actually having episodes of lightheadedness, dizziness, syncope, sees cardiology. They give him some recommendations. His jaw opening continues to decline, which is why we added the masseter in earlier in the year. And then he says, hey, my spasms are still responding to Botox, but we're seeing a progressive decline. In May, he gets a prosthesis to avoid biting his tongue while talking. Pain team has added Cymbalta. They stopped naltrexone. And then you can see the meds I have there in 2024. He was on Cymbalta, Valium, Gabapentin, Scolaxin, and Baclofen at one point and just doing trial and error. So at the end of 2024, in August or so, pain team says, maybe we should try an intrathecal pump with Prialt. And I'm like, huh, okay. And so not being in the pain world anymore, I actually didn't know what Prialt was. But in between he's like, oh, I fell and I tore my rotator cuff. And so he has a rotator cuff surgery. And then if we go to the next slide, they went ahead and did a Prialt IT pump placement in August of 2024. So Prialt, the mechanism of action, it blocks anti-calcium channels, the nerve cells involved in pain transmission. So I just, and I don't know how many of y'all are familiar with it. I was not super familiar with it. But he continues to report this deep cramping pain. In September, he's hospitalized. And this time his GJ tube is switched to a G tube. He's still able to do about two fingerbreadths of jaw opening. So it's not significantly worse, but it's not getting much better even despite the masseter Botox. So at the end of last year, the pain team decides, okay, let's try swapping the Prialt to Baclofen. And they do a Baclofen injection into the IT pump. And he says, okay, that helped. So they switch it out. And he says he's having significant improvement. So I saw him in December, did his Botox. And then a couple of weeks ago, I got a message by a speech therapist saying that he's having more esophageal spasms with episodes of walking up, difficulty breathing and speaking when this happens. And his oral opening is now down to one and a half fingers. And I wanted to show you guys this video. So let me see if it Oh, all right. Okay. Sorry, 1 2nd. All right, it logged me out. One last try, sorry, if it doesn't work, it's okay. We can see it, it looks great. Can you see it? Yeah. Okay. So he sent me this video yesterday. So right now the Botox is still in effect, right? Cause it's been about two months. But you can see kind of the level of fibrosis. and so that right side is just super super taut. And then you can see the platysma. You see those kind of little spasms just going on. And this is better than when I see him once the Botox is worn off. Okay, do you guys still only have access to Botox or are there any other toxins you have access to now? No, so that was the whole point of me sharing this. So now we finally have access. Okay, how do I get out of here? Okay, stop share. So if you go back to the PowerPoint, that's actually why I was hoping to have this meeting. So I haven't used this for in about 10 years now, maybe a little longer. And so this is what I had done for him in terms of Botox. And I would like to trial switching to Dysport. And I wanted thoughts about that. The biggest thing that we've heard right with Dysport is that it technically has a greater spread, but could this be good for him? Because he's telling me he's having like these deep esophageal spasms too. I think he's just having so many spasms of those muscles that I was wondering if that switch might be beneficial. I asked Head & Neck if they could try any deeper muscles. They said they don't do anything else. I asked GI if they have options. I was like, I don't know if you guys would consider doing anything else. And they said, no, they don't. They, you know, the only Botox they would do is like upper esophageal sphincter or lower esophageal sphincter. And they don't think that that's gonna impact this significantly. And Head & Neck is like, well, maybe we should consider putting a trach in, you know, if he's starting to have airway compromise and difficulty breathing when these episodes occur. And so that was my exact question for you guys was what do y'all think? Do you have any suggestions? Do you think Dysport might be a good alternative for somebody like this? I'll open it up to the group before I throw my two cents in. Okay, hearing none, I'm gonna take that as a open invitation. So, well, first let me say, I'm actually very impressed with your dosing scheme, Ekta. You've worked your way up to a pretty solid dose. So I don't think dosing-wise you're gonna make a significant difference. To me, it would make sense to make a lateral switch to a different toxin. And, you know, the conversion for dysphoria, even though there's no official conversion, we kind of like tongue-in-cheek, no pun intended, we'll do a kind of two and a half units of dysphoria to every one unit of Botox conversion. And so I think if your volume, when you re-suspend your dysphoria, you keep your volumes similar of what the volume is that you're using, I don't know that you'll get as much spread as we're concerned about. That's just my two cents on that piece. As far as other muscles that I would include, you've got your scalenes. That was one that I know didn't pop up initially, but you added in. I think that makes a lot of sense. The spasming that's like impairing his breathing, I'm surprised that even head and neck isn't willing to do like a laryngoscope to Botox's arytenoids or something, because that would seem, does he have any vocal changes whenever he has those spasms that he does, right? Yeah, it's been huge. Like from when I first started seeing him to now, like his voice has changed in terms of quality, his ability, like he stocks breaths, it's, yeah. I mean, to me, he's clearly having laryngeal spasm, in which case Botox would be ideal to treat that. And if they've got a laryngoscope, they should be able to do it. It's as far as I know, it's within the scope of practice of ENT and. Yeah, so one thought I've had is maybe you're referring to an outside ENT. I think our ENTs in general no longer do Botox, but that's what I was wondering. I don't know if you guys have, like, have you had ENTs that have tried that and have patients with good relief? Yeah, I mean, I haven't come across a case quite as challenging as this yet, but our ENTs I know do it, and at least I'm fairly certain they do it. At least they'd be willing to. I don't know where this guy lives. I know we're right down the road from each other in San Antonio. But yeah, I mean, I struggle to see where else you could meaningfully add anything beyond what you're already doing as far as, like, other muscles, because it does seem like a lot of his pain is, and the spasms are more anterior. You mentioned he's got some more posterior neck pain too. I don't know if you had thought about injecting the longitimus just back here under the, where it inserts on the mastoid. I like that one a lot. Gives a fair amount of pain relief, and especially with headaches. For trismus, I know you mentioned the masters that you did. You could always spread some of that around to the temporal and the medial pterygoids, because those are your other two that participate in jaw closure. And there's a pretty easy way to get access to the medial pterygoid through the cheek here if you just put a probe between the zygomatic arch and that angle of the mandible. You should be able to see it as the deeper layer. You'll see the master more superficially. Just make sure you're a little bit anterior, or that you're anterior enough from the parotid gland, but I think you can handle that. Yeah, I actually do medial pterygoid under EMG mostly. Yeah, well, I use both forms of guidance when I'm doing these injections. I'll use the EMG, and I'll use the ultrasound. Yeah, that's a good idea. We've been talking about adding it. Acta, did you use ultrasound or e-STEM guidance for this? I've done both for him. So I've swapped back and forth between sometimes using ultrasound. Actually, the patient noticed when I did ultrasound guidance, he preferred when we could use, he thought EMG tended to be more, it tended to be more effective for him. EMG and not e-STEM? Yeah. Oh, interesting. Yeah, because I just learned that ultrasound plus e-STEM is good for spasticity, and a patient maxed out with 800 units, totally different, not head and neck cancer, seen as lymphoma, actually, but actually got significant benefit with the same dose using both for guidance together. And the other thought is, it sounds like you're saying like this worked well, but he's still having some spasms, and that's why you're- It's just- Of what next? Exactly, it's been progressive. Like when I first started seeing him, we were doing like 200 units, right, in 2022, and now I'm up to like 500 units, basically. So it just continues to progress, which I think is also his disease, right? I think it's the radiation, fibrosis changes, and he's been counseled that this is probably going to progressively worsen. So what I was wondering was whether or not switching to Dysport might be helpful or an alternative. He says the Botox went from giving 100% relief to about 60 to 80%, but he's had progressive worsening of symptoms still, like in terms of his oral opening, in terms of these episodes of like difficulty breathing. And do you usually see that much progressive like spasticity like over this timeframe, or is this like more than usual? So, I mean, to be fair, his initial radiation was in 2012, so it's been like 13 years, but I still think his case is more than I've ever seen, in like our head and neck patients with no improvement, but I would be totally open to hearing what other people have encountered because that was another question. I think the other thing that you could try to act just in the spirit of, because I agree with you, the impression that I have too, is there's probably a component of like the progressive radiation fibrosis that's going on, potentially some of that, what is it again? The myelorediculoplexoneuromyopathy process going on as the radiation's affected the myelin sheath around all those nerves in his head and neck region. You know, a couple of the other things you could try is really just targeted towards the radiation fibrosis. I don't know if you've tried hyperbaric oxygen for him during the course of that. There's a recent article I saw come out that I haven't tried it really extensively yet, but instead of the bentoxifilin, invited an E-Pravastatin at 40 milligrams a day has been shown to help slow the progression of radiation fibrosis too. So that's something else you could potentially try. So I think with hyperbaric oxygen, I haven't ever felt like it's been very successful or helpful, but I can reach out to the head and neck team and see what they think. That's, yeah. The Pravastatin's not a bad idea, but that's a good idea. Like I didn't think about that. It's just like, I didn't know what else to offer. And I was thinking like, why not try a toxin change? Do you think there could be some concurrent neuromuscular issue going on that hasn't been evaluated? Like I just, someone just called me about a case today, GYN cancer advanced meds, concurrent ALS. And so that's on my mind. Like, do we need to do a neuromuscular workup also? I will admit the thought crossed my mind too, especially with those fasciculations dancing across his neck. But in the context of what Ecta has been doing, that's, you would know best if you think that that's progressing. I guess I haven't really considered that. I'm not gonna lie. Like I haven't really considered something else going on just because it's so localized. Yeah. It's not anywhere else. You can just check for distal weakness and some reflexes just to everyone's mind at ease. But yeah, I agree. I don't know that, I think it's good to cast a broad net. No, it's a good idea. He's like, I mean, before when I first met him, you could see well-defined, each muscle like well-defined. So he used to go to the gym every single day. And he still goes to the gym five times a week despite all of this going on. So I definitely can ask him. Whenever I've asked him, he hasn't reported like distal, but I'll ask him and check some reflexes. No, he's diligent with his stretches, yeah? Diligent with his stretches. Yeah, he actually ended up taking leave from work because he felt like the medications that we were trialing, he was just too drowsy. He worked in a factory as the supervisor. He was like, I can't be on this stuff. So he retired early from work. And his wife is a nurse. So like, you know, he has good support at home. She encourages all the stretches. Like they're pretty like pretty compliant patients. That's good, that's good. Yeah. I think it's interesting about the breathing difficulty. I don't normally think of that as something we necessarily evaluate. It's more about the soft tissues. But I did have a patient and he had pretty bad trismus. He didn't want to do Botox. And then he just wanted to stop coming. His sister didn't want to bring him anymore. But he would complain of intermittently difficulty getting his breath. There was no visible episode or anything like that. And then a few months later, I heard that he died. And it was not anything any of us expected. And that kind of haunted me a little bit. Like he was mentioning difficulty with his breathing from time to time. And so that's interesting about the retinoid spasms. This guy was not obviously spasming, but you know, just in terms of what, if anything should we be thinking about in terms of the pattern of any breathing symptoms and how that ties in. I was thinking his trismus was bad enough, just even his oral airflow. He didn't have a trach. It was more of a soft thing, intermittently happening, not stridorous. But anyway, any thoughts on that? You know, the other thing that he possibly could have died on is like aspiration, right? If he didn't have a feeding tube. Like this patient, I think he's admitted at least three times a year with aspiration pneumonia. And he keeps working with speech therapy. And like, it's periodic. So I'll Botox him and his swallow will improve. And then once the Botox wears off, his swallow gets worse. And if he drinks something in that little bit of time and then he'll aspirate. And so that's what we kind of realized. It's like cyclical because the Botox will help the spasms, which helps us swallow. So that's one thing, but I don't know. I mean, I would tell you like in a couple of months, if you didn't see any evidence of airway compromise, I don't know if that's truly like, that would have to be really fast progression of radiation fibrosis to cause airway compromise that fast, I think. Yeah, I agree. Especially that quickly. That's, I mean, a couple of months, that's fast. Well, that's interesting. The Botox would improve his swallow. I don't see a lot of these patients, but the few I'm thinking of, they would, I was reluctant to give Botox for fear of making their swallow worse. So it's interesting that you're reporting that it improved the swallow. It did. And I didn't do a good job. I did a case report at one of the conferences with the information, but I had like the pictures of the MBS. So in this patient, they did compare like pre and post and he had improvement because as you could see on the video, you can just see like those spasms and fasciculations. And when they decrease, he's able to swallow better. Back to the breathing. Do you have an idea of like what aspect of breathing difficulty is like where? And there were, cause I read something about considering intercostal muscles for Botox. Not that I've done it before, but I'm curious cause he said serratus and that region was fasciculating. What if it's intercostal muscles? So that's better, that like the serratus and rhomboid area, it's better. I don't actually even Botox it anymore. I think what it was, was he didn't, he was not exercising properly. Cause remember I told you, he went to the gym seven days a week. And I think he wasn't working on his scapular, you know, musculature in the right fashion. So that actually improved. He doesn't feel like, and I could ask him again. He's told me, it's not that he feels like he can't breathe from like his lungs. Like it's all like airway and laryngeal, kind of this area, like pharynx, laryngeal. Like he feels like it constricts. He's even actually kind of described it before. He's like, it's just like a band. And then I have difficulty breathing, eating, everything. But it's not cervical. Like, so that's why initially we like pursued all this cranial, like the cervical spine stimulator and all of that stuff. And I thought maybe he has these cranial neuropathies and everything that's spreading and that's contributing, but that didn't make a significant improvement. So the baclofen pump hasn't made a significant improvement. I mean, everything helps, don't get me wrong. It's just that there's been a progression of all his symptoms. All right. I have a question about dosing strategies. So this patient that you're talking about reminds me of someone I saw recently. He was, he underwent chemoradiation, I believe in 2012 at a different cancer center and has like pretty severe radiation-induced fibrosis. And he had received Botox in the past, I think 50 units to the right SDM and didn't notice any difference at all. And he's been trialed on many, many medications like neuropathic agents, opioids. I think he tried Pentoxyphylline and vitamin E at one point. I had some issues contacting his medical team because he was lost to follow up where he was treated. And I usually touch base with the oncologist, when starting something totally different. I have him on Baclofen now and his son was researching like fat grafting as a sort of alternative treatment for radiation-induced fibrosis. And so I just connected him to someone at a different medical center or plastics team because we don't have that at Cleveland Clinic right now as a option or the clinical trial or anything. But anyways, back to the Botox strategy. Maybe it's just me underdosing him or maybe it's just me being chicken. He has a G-tube, he has COPD, he had a laryngoscope before and I think he has pretty intense scarring, edema, all of those things. And I just thought, gosh, if I keep going up on this dose, am I actually going to make him worse because he had all these symptoms? But I was just wondering in terms of like over, what period of time, and maybe this was on your slides too, Ekta, but over what period of time, you increase that dosing strategy and sort of where do you max out? I think the most I've ever injected someone is maybe 250 units to like traps, SCM, scalenes, the usual suspects. So I just wanted some input there because now I'm thinking like maybe I should get this guy back into my office. He lives pretty far away, but maybe I should have him back and consider going up on the dose. I don't know if he's touched base with anyone. I sent him to Pitt. I don't know if he's had that appointment yet. I looked on Epic, I don't see anything, but just wondering, thoughts. Thank you. Yeah, no, I slowly went up. So I think they say like an increase of about 20% at the most each time, but I did it over a span of three years. I mean, I'm at 130 units in like the SCM scalene kind of area, and he's so fibrotic that every time I think, should I go up? But I don't know if it's even doing anything at this point. So I think, I mean, it helps with some of the, I know it helps somewhere, but I don't know how much it's truly helping. I just ramped it up each time I saw him. So from like 20, 22, when I started at 200 units to like every time I'd probably end up putting a little bit more here, a little bit more there, and then slowly going up till I got to the point of this like 500 units, 600 units. The masseters were later add, and that was like 40 units. I started at 10 and then I increased that too slowly. I actually doubled his dose. Usually I go from 10 to 15, but I went ahead and went up just because I was like, he's tolerating the Botox fine. So I think you definitely can increase it. If he has already got a G-tube, like it's probably fine. I would just explain the trouble swallowing could potentially worsen, but he has a nutritional source. Now I would say, I don't know if Pitt is doing this type of head and neck Botox. Our fellow that was there did end up leaving. She had to move. And so I'm not sure, cause I know I reached out to them for like breast radiation fibrosis Botox, and I was kind of struggling. So I'm not sure if you guys are familiar with anybody else doing it at Pitt. So it would be probably helpful to the patient to try a higher doses. Yeah, thanks so much. I'm also curious to know, I have to give them a couple of weeks to make it happen, but I'm also curious to know, cause they were really interested in this fat grafting. The son had a lot of questions for me. Of course, I didn't have a lot of answers, but that was like more of the focus of the appointment really. So I'm just kind of curious to know if I get more information from that too. There's not seemingly a whole lot in the literature and human studies that I could find, unless someone else has found something. Go ahead, John. That's interesting. Cause that's a new area for me too. Cause I was looking at post mastectomy pain syndrome and the plastic surgery options did mention fat grafting and what sounded like treating lymphedema surgery and lymph node transplantation type of options. So I wonder if you mentioned he had some pain and had spinal cord stimulator. I don't know if there's a neuroma, like is there some kind of neuroma type of surgical techniques that plastics can consider too? Yeah, there's some literature in PNPS related to that that might cross over, who knows? Yeah, and I would agree. I'm not super familiar with fat grafting except for in the breast cancer population. So that's a great question that I don't think I know the answer to. I don't know if anybody else. Oh yeah, sorry, it's getting late. Do you want to move on to the next presentation? I mean, I'm fine letting this discussion continue to go. I think people are stimulated by it, so I just want to make sure. Did I lose you guys? I can't see any of your beautiful faces anymore. No, we're here. I think you started this year's presentation mode. Maybe. Okay. Well, I mean, I can fly through mine really quickly. It's really more just for the who's and the ah's of the pictures. I adapted this one really just from an M&M that I did with our residents for a patient of mine. Kind of long story short with her, had a history of breast cancer, was on, got pretty run-of-the-mill treatment, had neoadjuvant chemo and, or excuse me, neoadjuvant immunotherapy with palbociclib and letrozole for the endocrine therapy. Ultimately got a mastectomy, sent on lymph nodes, converted to completion axillary lymph node dissection. That was all on the left side. And then adjuvant chemo got stopped due to side effects. Got radiation and had been on letrozole and eye brands, was on abomassoclib ultimately starting April 21. And that's which is when I met her. She was doing pretty well for a while. Ultimately was really mostly treating her for lymphedema and some corting. Everything kind of went down around July. She got re-referred to me because of some new chest wall pain and got referred back to me simultaneously as well as PT. At that time, I had a really hard time getting folks into my clinic. So there was a long wait. But while she was waiting to get back in to see us in April of that same year, she shared this story with me of her trying to open a jalapeno jar under her arm and felt a terrible pain down her left arm. Went to the ED and found that she had a mid-shaft humeral fracture. Very, very questionable story there. Very suspicious story. And so ultimately got an open reduction internal fixation by a local ortho in the Rio Grande Valley. I'm located in San Antonio. And so we're just a little bit north and we get a lot of folks that come up from the Rio Grande Valley. Between here and Brownsville, we're kind of their big access point. Supposedly no complications from the surgery, no reported malignancy. They got an intraoperative biopsy. We never got a hold of the slides. We had requested them. So there was a little bit of an asterisk by that biopsy. But the family, the patient seemed very confident. There were some records that were shared with us that said that there was no, that the biopsy was negative for cancer. And I ultimately kind of deferred it to the medical oncologist to chase that down or not. But ultimately kind of the tale went on back and forth that her lymphedema was worsening. She was having more pain, more pain. I was most concerned for a pathologic fracture, even though what was told up and down the story was just too, too good. Midshaft humeral fracture, opening a jar is like almost what they write on the boards, it seems like, for when we're trying to get someone to think about a pathologic fracture. But I treated her previously for some adhesive capsulitis in that arm. She was someone who had demonstrated a propensity to not always follow what recommendations were. So there was a question of that. And then the worsening lymphedema on top of that kind of clouded the picture as well. Ultimately, we went on to follow up with her, talked with medical oncology about my concerns. We got chest, abdomen, pelvis, CTs, bone scan, all in August of that year. Showed really just a healing left humerus fracture is what was kind of reported. It was hedged on the read, but I'll share with you guys the images here. But otherwise, we had nothing to go off of. She said her pain was doing better with some Tylenol and Tramadol as needed. There was this same ortho who repaired her who supposedly told her that she needed to stop going to PT because, quote, her arm was going to fall off and that she needed to stop therapy immediately. Still continued the PT. I mean, all of her imaging showed she still had a humerus. So I don't really know where that was coming from at the time that that was reported. But was getting manual lymphatic drainage, wrapping done. Didn't really perform it on her home. Again, kind of going back to this propensity towards some non-adherence. But ultimately, really was just noting at that point just the worsening swelling. At the time, this is a scout image from that CT showing the open reduction internal fixation, the humerus there, and then the read from the bone scan is highlighted there at the bottom where there was some increased uptake in that left mid humerus. They recommended that kind of correlation. Again, kind of hedging a pathologic fracture in that region, not excluded. Diffusely, the uptake in the remainder of the distal left upper extremity is likely due to increased regional flow, which could also, after talking with the radiologist who was interpreting the study, said that it could be that there was healing from a prior fracture, potentially pathologic. I shared with him the results of the biopsy that was taken intraoperatively at the time that was reported to us. The pathology report sharing that and so forth and said, okay, well, it could also be just from a humerus fracture healing. So these are the CT scans that were done that day in August of 2023 when we got the CT chest, abdomen, pelvis. This is what could be seen on the CT with the sagittal view here. You can see where the scan kind of cuts off. And then this being the coronal view, you can see where there's the kind of cut off there of that left arm. And we can only see so much of the humerus. This was the bone scan at the time as well. You can see a fairly lymphedematous limb, some increased uptake around that mid-shaft, but nothing super, super clear cut. And really just that one area that was lighting up. The rest of her skeleton was determined to be pretty benign appearing, no other mets, her chest, abdomen, pelvis didn't show any mets. But of course, lots of phone calls around November timeframe. And then I met with her via telemed. At that point, patient went to see another orthopedic surgeon, opted to continue with lymphedema therapy, was told that she had extensive nerve damage in her arm and that PT wouldn't help her and that she had maybe some developing CRPS or causalgia. And that the pain was really, really severe at this point. She was able to, not really able to move her arm hardly at all, barely able to bend her elbow or pronate her wrist. She was passively able to range it a little bit more than that. But I mean, we're talking minimal movements, a few degrees in every plane, flexion, extension, internal, external rotation. It was very, very, very little. Occasionally the pain would wake her up in the middle of the night, brushing across the limb of the bed sheets would aggravate the pain. There was a lot of redness, warmth. They reported some hair loss and shiny appearance. I, because it was a telemed visit, I had kind of a crappy connection and evaluation, but there was maybe some reflection of a light off of the, off of her skin. So I thought maybe this is, it could be a CRPS kind of picture developing. I don't know. Let's, you know, I'm going to put some stock in the orthopedic surgeon who saw her directly and kind of go a little bit off of that, but I'm still quite concerned. And so prescribed her some duloxetine to add on to her pain regimen at the time. Was going to reach, reach out, to speak directly to the CLT that was in the Rio Grande Valley, who was taking care of her to provide some reassurance that this may just be worsening lymphedema and this patient is not adherent and this, that, and the other, but definitely wanted to see her very soon. The painful part of this was that in December, of course, because we go on vacation every so often, I went on vacation and the patient was scheduled over, over this timeframe that I was to be on vacation. Our institution has a policy for advanced notice 60 days prior to blocking any clinics, which I complied with as, as I do and found out the patient wasn't contacted to reschedule her appointment until two days prior to her appointment, at which point she was scheduled for the next available appointment, which is which was almost five months later. I had no idea about any of this, of course, ultimately go on to get this message on the right from the daughter, letting me know that the patient's now in the ICU after surgery emergency surgery, she had, I see the medical oncologist note that she had sent the patient to the ER at the time with concern for cellulitis. This was her arm at the time. They did an ultrasound, no DVT. And you can see here on the scout image her screws are just completely all over the place. She ended up going on to have very severe necrotizing fasciitis, a lot of infection in there. All the screws were just loosely backed out and bottom line got more biopsy. Turns out patient had huge osteolytic met that had just completely destroyed and dissolved her entire humerus. In this case, ended up undergoing a, an amputation lost. Lost her arm is now on treatment for metastatic breast cancer. She's, she's still alive several years later. I still see her. And very, very unfortunate outcome in this case. We identified quite a few issues that I took back with our teams at the, at the cancer center, especially with the scheduling problem. Another issue of course, is that we were, as I mentioned earlier, we were never able to independently verify the path results from this reported biopsy that was taken intraoperatively by a orthopedic surgeon in the Rio Grande Valley. And so we had requested them, our medical oncologist who requested them that we never sent and that our suspicious was high, but we never really re-imaged the left upper extremity. As I showed you guys, the CT chest, abdomen, pelvis that we got, the bone scan that we got, pretty unclear the, the CTs of her chest. Since we didn't do a dedicated one of her left upper extremity, you saw where the cutoffs, where it was right at where the the fixation really took over. And so that was something I, I still kick myself about this case sometimes because I wonder if we would have had dedicated imaging and ordered advanced imaging of the left upper extremity if I had seen her in December. I want to tell myself that I would have at that point because my concern was so high, but it's, it's impossible to say. But the takeaway here and some of what our discussion was with the medical oncologist too, was, you know, what would be the role of getting advanced imaging when there is that big ORIF plate and screws and everything in that region? Is it going to cast a ton of artifact and we're not going to be able to see So there was this kind of cost benefit math that we were trying to do in our minds. But ultimately the takeaway, and what I want you guys to take away from this case too, is that plane radiographs, as we know, have pretty low sensitivity compared to bone scans. That's really the first line imaging and it's most sensitive towards osteoblastic mets, but in breast cancer up to 20% of them can be osteolytic mets and bone scans don't pick those up very well, which in this case, these mets turned out to be osteolytic in that case. And talking with a medical oncologist, it is very unusual for a patient to have such an isolated skeletal met and no mets anywhere else in the body at all. When a patient has metastatic breast cancer. I don't know if she's telling me that to make me feel better or what, but that was kind of the case. CT can be much better for this and MRI, they have in talking with our radiologists, they have some pretty effective metal suppression sequences that they can do next to hardware these days. So had I had the opportunity back, I probably would have opted for an MRI over a CT, but who knows neither here nor there. The other case, this one's a little bit more active and kind of ongoing. This is a patient of mine who I've been following for coming up on a year now with a history of primary CNS lymphoma, had seen him initially for some right shoulder pain. No problem. Yeah. Thanks for sharing that. That was, yeah. Vulnerable and very good learning opportunity from that. Thank you for keeping an eye on the time, Jess. No problem. I don't know where you left off with the introduction. So we just launched right into it. So I will turn it over to Jess to kind of close us out. The next one is going to be in April and we do have fellows lined up for the April and the June session. And for any of the attendings, if you have any complex cases, whether a learning point like Ryan's, or something to discuss across the nation, like Ecta's case, we welcome it. Just let you can email cancerrehabtumorboardatgmail.com or let one of the leaders know, and we'll, we'll slot you in as we're able to. You can also bring, bring up cases impromptu as, as space allows, but really appreciate everyone participating. And if anyone has interest in, in the next cycle in working with the leadership, we would more than welcome that. Just let us know. And we're happy to share what that could look like. This is still a pilot effort, very malleable. The purpose is to serve our community, learn together, and support each other with the complex cases that we see. So thanks everyone for joining. Have a good rest of your night. Bye.

radiation fibrosis

squamous cell carcinoma

dysphagia

spasms

Botox

cervical spinal cord stimulator

Prialt pump

Baclofen

Dysport