ICU – “I SEE YOU” PODCAST
Vestibular Healthcare From Nurse Practitioners & Physician Assistants
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Primary care practitioners are often the first healthcare professionals we seek when we feel dizzy, disoriented, or not quite right. Their role is to take a medical history and assess whether the person can be treated immediately with medication or therapy, or whether they need to be referred to a specialist for further testing. One challenge, however, is that by definition, primary care practitioners are generalists and may not know enough about the signs and symptoms of vestibular impairment to triage patients appropriately. The good news is that there are Advanced Practice Providers such as Nurse Practitioners and Physician Assistants who specialize in otolaryngology that can serve as a first point of contact to help dizzy patients get on the road to recovery more quickly.
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
ABOUT THE GUESTS
Maria Machala is a certified nurse practitioner and the director of the Dizziness and Balance Clinic at the University of Colorado, where she specializes in otology and neurotology. She has a special interest in vestibular migraine and in the overlap between migraine and Meniere’s disease and other vestibular conditions. She serves as a guest lecturer at the Physician Assistant and Nurse Practitioner schools within the University of Colorado and is a clinical mentor to students in these programs. She teaches advanced practice providers who work in otolaryngology how to perform otologic procedures and comprehensive vestibular evaluations.
Lindsey Mwesigwa is from Dayton, Ohio where she lives with her husband, son, and 2 dogs. One dog is Jazzy, a German Shepherd who is her service dog. She has been a nurse since 2008 and is currently an associate nurse manager on an advanced cardiac floor. Her vestibular journey began in 2016 with minor episodes of vertigo and dizziness. She had periods of brain fog, and then the true nightmare began in September of 2022 when her episodes became severe and debilitating. She was diagnosed with Vestibular Migraines in October 2022 and then PPPD in November of 2023. Having a vestibular disorder has affected her professional and personal life. She is trying to spread awareness and education to help other vestibular warriors who are suffering get relief with quicker diagnosis and treatment.
Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/
Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media
TRANSCRIPT
VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Cynthia Ryan – VeDA
Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.
Kimberly Warner – Unfixed Media
During this podcast, we invite patients to share their stories and healthcare professionals to ask questions. So they are equipped to better care for and truly see the invisible challenges faced by their patients. I’m Kimberly Warner. And
Cynthia Ryan – VeDA
I’m Cynthia Ryan. And we are your hosts on this journey of discovery.
Kimberly Warner – Unfixed Media
Welcome, everyone, to 2020 for the ICU podcast, I can’t believe we’re actually in year two of this series. I’m really looking forward to another year of conversations. This January, we are beginning with primary care and the role of Physician Assistants in vestibular health care. This is a big one because every one of us touches at some point or another in the primary care practitioner scenario. And I think it’s important to learn a little bit more about how to navigate this. So primary care practitioners are often the first health care professionals we seek when we feel dizzy, disoriented, are not quite right. Their role is to take a medical history and assess whether we can be treated immediately with medication or therapy, or whether we need to be referred to a specialist for further testing. One challenge however, is that by definition primary care physicians practitioners are generalists and may not know enough about the signs and symptoms of vestibular impairment to triage patients appropriately. The good news is that there are advanced practice providers such as nurse, nurse practitioners and physician assistants, who specialize in auto laryngology that can serve as a first point of contact to help busy patients get on the road to recovery more quickly. So today we have two fabulous guests. Cynthia, you want to introduce our best
Cynthia Ryan – VeDA
guests. Thank you. Welcome everyone. And we have with us today Maria makalah, who’s a certified nurse practitioner and the director of the dizziness and balance Clinic at the University of Colorado, where she specializes in otology and neurotology. She has a special interest in particular in vestibular migraine and in the overlap between migraine and remarriage disease, which we all know there’s a lot of overlap, as well as other vestibular conditions. She serves as a guest lecturer at the physician assistant and nurse practitioner schools there within the University of Colorado and is a clinical mentor to the students in these programs. She also teaches advanced practice providers who work in otolaryngology how to perform otologic Ohto logic excuse me, that’s a lot of OHS autologic procedures and comprehensive vestibular evaluations. Welcome Maria. We are so happy to have you here to talk about this topic today.
Maria Machala
Thank you happy to be here.
Kimberly Warner – Unfixed Media
And Lindsay today our patient guests but also more than patient. Lindsey Miss sigla is from Dayton, Ohio where she lives with her husband son and two dogs. One dog is her name is jazzy, German Shepherd who is Lindsey service dog. She has been a nurse since 2008 and is currently an associate nurse manager on an advanced cardiac floor. Her vestibular journey began in 2016, with minor episodes of vertigo and dizziness, meant she had periods of brain fog. And then the true nightmare began in September of 2022 when the episodes became severe and debilitating. She was diagnosed with vestibular migraine in October 2022 And then pppd in November of 2023. Having a vestibular disorder has affected her professional and personal life as we all can relate to. She is trying to spread awareness and education to help other vestibular warriors who are suffering, get relief with quicker diagnosis and treatment. Welcome, Lindsay. I’m so happy to have you here with us.
Lindsey Mwesigwa
Happy to be here.
Kimberly Warner – Unfixed Media
I just wish jazzy was here with us as she next to you.
Lindsey Mwesigwa
Well, she is she’s asleep in the corner right now that are working all day.
Kimberly Warner – Unfixed Media
Lindsay, do you want to actually get to help us get started here and just tell us a little bit about your vestibular story and how you were diagnosed?
Lindsey Mwesigwa
Yes, of course. It’s kind of a long journey, but I’ll try to summarize as much as I can through everything. So as we said it started in 2016 I started getting these episodes of like brain fog like vertigo dizziness, but If they really weren’t too severe then like, it was enough for me to be like, okay, like those were there, like what just happened. But they would like quickly pass, then I reached out to my primary care doctor then. And then I had some like scans and stuff, they didn’t find anything that was wrong. Went to my en t doctor at that time, they couldn’t do the same thing. They couldn’t find anything wrong. And it was like, it was kind of hard to explain, like how I was feeling because they would like come and go so quickly then. It wasn’t like, truly affecting my life so much at that time. So like, as the years went on, I just kind of like, let it go. Like if I got an episode that down, everything would be okay. But then in 2020 to September, my episode started getting really severe. The first one I can remember, I was at work, and I got a very bad vertigo spell, everything started spinning. And it was spinning so fast that I couldn’t even stand up. Like I fell over my coworkers. Luckily, were there enough and they caught me. So I ended up just going home, I went to my primary care doctor, the next day, we did a CT scan, some lab work, everything came back fine. So she’s like, well, we’ll just kind of watch it for a while see how it goes. You’re, you’re you just had a birthday. So you’re like a year older. So we’ll chalk it up to that for right now. So but I was like the time kept going like the next week, like things just kept getting worse, like more symptoms started coming on, started having problems with like my eyes, like abnormal movements, the vertical and the dizziness just wasn’t passing. So I reached back out to her and she consulted neuro. But getting to a neurologist, as a new patient, outpatient is a long wait. So I was like, just waiting for that appointment. But things just like kept progressing. And I’m like something is seriously wrong. Like it was getting to the point that I started to have trouble walking at times, because my balance was so bad. And I was trying to work. And it just wasn’t working out for me. So I ended up going to my first ER visit where it gave me a COVID Tat, and Amy, the migraine cocktail. And just kind of like, let me sleep that off. And then they’re like, you’re good to go home. And that’s all that happened there. So then I kept kind of reaching out to my primary care doctor, and she like, wasn’t quite sure like what was going on either at the time. So we were just waiting for the neurologist appointment. But my symptoms were just to the point that I just couldn’t fit in way like I was I needed to work or figure out what was going on. I was missing work on a daily basis. So it was like I just kind of kept advocating for myself and trying to go to different places. So I ended up going to another ER visit and at that point, they thought maybe I had Ms. At this er, so they’re like if we wait for an MRI, then you’re gonna sit highly in the ER for like two to four days before we can get the MRI done. So it’s better if we just send you home, and we send you to our neurology group. So yeah, so leaving there, so then I ended up with two neurology appointments. And both of them were like a month or more wait. But I took it upon myself just to go see one of the MS specialists at a different facility who didn’t think it was Ms. But she’s like there’s definitely something going on. Just I just don’t believe it’s Ms. So ended up trying to go back to work. And when I was working I ended up with another like really bad spell. I was going to one of our staff emergencies on our unit. And when I went to go back to my office, the vertical hit my eyes kind of rolled back. My coworkers caught me again. Luckily they were always there to catch me so I didn’t hit the floor. But after this episode I couldn’t talk Um, and I was like, Am I in shock? Like, what’s going on? Like, you know, I was just like kind of in like disbelief like to see me back to my office, whatever this is will go away. So I’m like trying to work and not like if nothing was coming back, I was so lightheaded. It was like 25 minutes, I still couldn’t talk. I knew what I wanted to say. But I just, I couldn’t like make my mouth everything, do the motions to get those words out. So I ended up having a struggle are called on me during work and take into the ER. And I spent like five days hospitalized. And I still didn’t have an answer. When I left, I was diagnosed with anxiety leaving leaving Japan, because they thought when I went to the staff emergency, it made me anxious. And that’s why I couldn’t talk and I was dizzy and everything. But I did get a referral for vestibular therapy. Because there was one therapist that really advocated for me during like my hospital stay. And she’s like, though there is something going on, like she needs to go to vestibular therapy. So I can appreciate that person that really like tried hard to advocate for me for the doctors, and she ended up getting me to a great therapist. And then right before I started this cellular therapy is when I went to one of those neurology appointments, and spent like, a lot of time with them, like three hours with assessments and everything. And that’s when I was diagnosed in October of 2022 with vestibular migraines.
Cynthia Ryan – VeDA
Wow, wow. Your story is, I mean, it’s, we hear these long diagnosis stories all the time. But your story is really amazing in so many ways. And one of the things that I I think directly relates to the topic that we’re talking about today is how you kept in, you kept seeing primary care providers that couldn’t help you. And they were doing the right thing by referring you to a specialist, but that wait for the specialist. So. So I think that’s one of the things that, you know, this discussion today is really applicable to is how can we help patients who, who need need the stimulator or care at the primary care level? So
Kimberly Warner – Unfixed Media
yeah, and if they didn’t have anxiety before, it’s all started, they certainly have to be shuffled around told they might have Ms. Toll, you know, going to so many different Doc, I mean, it’s like wonder there’s, there’s an escalation of symptoms through this process. Yeah.
Lindsey Mwesigwa
So like a lot of advocating like for myself to like, something’s not right. Like, I noticed that anxiety. So it’s about this and it was like, a primary care was great. Like, she’s been great through the whole process. But it was like what, like she didn’t know about all like, the vestibular stuff at the time. So going through that process and a lot of advocating for myself. And I’m like, I’m in the healthcare field. So like I knew, like, kind of what avenues to take, where if someone’s not in the healthcare field, they might not know what to take. And yes, those wait times are waiting six months to see a neurologist is very hard, especially when you’re like young and you need to provide for your family and people can’t wait six months. Yeah, you
Cynthia Ryan – VeDA
can’t put your life on hold for six months. And your, your work isn’t gonna wait for you either. That’s it’s such a challenge for so many people. So, Wow, I’m so sorry for all that you went through. Maria, let me ask you. Let me ask you this. So, you know, we’re talking about primary care and getting getting getting patients connected with someone who understands vestibular care early in their diagnostics journey. Now you’re a nurse practitioner, and I know that you so you, you specialize, though you’re not in primary care. Can you tell us about what how did you get into specializing in vestibular disorders or otolaryngology? And what does that look like?
Maria Machala
Sure. So I started working in EMT about nine years ago, and I always had an interest in it. You know, I worked as a as a nurse, a bedside nurse in the hospital here at University of Colorado, and would work with the EMT team here and there and always just found it fascinating. So, when I finished NP school, I knew I wanted to be an EMT. And then I actually sub specialize in otology and neurotology. So it’s a subspecialty that deals with disorders of hearing and balance, and then skull base Skull base tumors. So over the past nine years, I’ve been really fortunate to work with some really well known physicians and vestibular in the vestibular world, Carol Foster, Herman Jenkins, Steve Cass, and they really ignited my passion for it. And then just knowing the gaps in health care, like your story, Lindsay, I hear that all too commonly. It’s motivated me to make it the primary focus of my practice now, and improve patient access to care.
Kimberly Warner – Unfixed Media
I applaud what you’re doing. I mean, I feel like it’s it’s one of those areas that once you know about it, it seems so obvious that everyone should have this some tiny little bit of training so that this process of diagnostics can happen more quickly and efficiently. So thank you. Yeah, you’re doing
Maria Machala
I think part of it is, you know, there can be so many different causes of dizziness that really span the specialties. And so I think that’s where, where there are gaps, you know, if you went out of your specialty, then it’s kind of hard to know which direction to go in.
Kimberly Warner – Unfixed Media
I think that’s a really good point. Actually, Lindsay, I’m curious what you would say about that, since you two you’re a vestibular patient and a health care professional. What do you think the challenges are for primary care providers and helping people with vestibular impairments get the right care? Yeah.
Lindsey Mwesigwa
I think the biggest I think the biggest obstacle is like the lack of awareness, like with vestibular conditions, I mean, especially like in the area that I live in, it’s like, so many of our providers just don’t just aren’t aware of like the vestibular conditions, a lot of them know about, like, the PPV. But it seems like beyond that. They’re not just they don’t have like the awareness of it. Also, like, as we discussed, like the wait times, it’s like, you know, you’re getting dizziness, and all these different symptoms, and they’re not sure where it’s coming from. So yeah, they’re sending them off to the specialists. But then it’s like, we’re waiting months and months for those specialists. And I think like, they just need to, like know, the steps to like, take to, like, help the patients at what they can do, from their level, like sending to like vestibular therapy and stuff. My disability therapist has been great. And I wish like, if I could have started with that, you know, from like, maybe like the first visit, when I started having those issues, we might have been able to get somewhere a little bit faster.
Kimberly Warner – Unfixed Media
I think you’re right, and I also you because you visited the ER a couple times to it’s probably, it’s where we go, when we’re having an emergency, I did multiple visits as well, in the early stages, but that almost compounds the comp, it complicates things even more, because when those notes get sent back to your primary care physician, they’re getting even more data that might just be like, well, she came in with a lot of anxiety, or we gave her a COVID test or email. And so they’re drawing from almost too much information than just seeing you as you are do you feel that way that the ER visits complicated?
Lindsey Mwesigwa
Um, I feel like the ER visits, they just wanted to try to like, fix, like, what was happening right then. And like, they would do like the CT scans, and they’re like, Okay, they’re great. You couldn’t go back home. I don’t feel like there was they kind of like lacked more of like, what was what could like cause dizziness. And patients or, I don’t want to say like, they lacked like, the caring. I think it’s just with the vestibular conditions to like, sometimes it’s so hard for me to describe how I’m feeling or like what I’m describing, like, they’re not understanding either, you know, like, on the flat how, like, floors look tilted or like patterns, like, I lose my balance on them. It’s like, they’re like, What do you mean? Like, that causes you know, you know, uniform or whatever. So I think the ER is just like, now going through all those ER visits. I’m like, if I have like major flares, I’m like, that’s the last place I would go.
Cynthia Ryan – VeDA
I mean, that’s the thing is in human medicine, and In our medical system, everyone is so specialized, you know, the ER role er is to deal with acute patients and then to send the patient back to primary care or to a specialist. I was actually listening to a comedian recently. I’m I can picture in my head, but I can’t remember his name. But he was describing a visit that he was taking his Bengal cat, he was older Bengal cat to a veterinarian, and he was making kind of fun of the fact that here’s a veterinarian who has to be an expert in cat anatomy and dog anatomy, and bird anatomy and reptile anatomy. And in humans, you have people who are an expert in the ear. And the I mean, it’s not just one species. It’s one, one, Oregon one. So, you know, obviously there, there are reasons for that, which is part of what we’re talking about. Maria, I wanted to ask you about what you said, when you said that you were, you’re going through NP, your nurse practitioner school, and then and you always you worked with the EMT team, you knew you wanted to specialize in that? How do you know that? That’s, I think a lot of people don’t know that, that primary care providers like nurse practitioners and physician’s assistants specialize, can you? Can you talk about how, you know, how many of them do that? And how do you find them? Yeah,
Maria Machala
so I think it’s important to understand how both nurse practitioners and physician assistants, which collectively, we’re known as a PPS Advanced Practice provider, so I’ll say a PPS, about how we came to be and so and what our role is, as part of the health care team, both roles were created in the 1960s, it was in response of a primary care shortage. And so it was really to increase patients access to care. And so nurse practitioners, or nurses with additional training, usually Master’s or doctorate degree, and then physician assistant, it’s a program that was actually modeled after the Fast Track training for physicians in World War Two. And so and that’s more of a medical model, and they have a master’s degree. So neither is intended to replace or be a substitute for a physician, we really, we all work as part of a team. And really our roles kind of complement each other. So for example, part of the nursing model is really focused on education. And, and also prevention. So and there are varying roles for EVPs. So you can work really closely with a physician and see patients together, or an APB can have more of an independent practice. And this all depends on what the training is, what what these experiences, what their interests are, and what the needs are of the patients. And so it is general training, you don’t really specialize in school. Nurse Practitioners are a little bit different. You can do acute care versus primary care, you can do adult versus pediatric. So there’s some specializing there, but not really, with a different like body systems. So but the point of this, it’s, it’s actually a good thing. It’s general so it allows for more on the job specialization and so we can really adapt to the needs of the specific practice or the community in which we’re working. So in this can really help bridge the gap between these different specialties, like the different specialties that see Dizzy patients, you know, it’s EMT, neurology, even cardiology, primary care, emergency care. So even though there’s not a formal training program for vestibular care, I think there are three important things and this is regardless of the role so physician, nurse practitioner, or PA or even physical therapist. So one is having a special interest in dizziness, you know, the, the balance system is really fascinating, especially the inner ear, and then to having additional training. So we have to do continuing medical education or CMEs. And you can get these through various conferences, there are associations that will do online training. And then the third one, and this is maybe the most important is years of experience, and that’s working with a mentor, either formally like a physician and a residency program or fellowship, and then for an EPP it’s more on the job experience, and then also years of experience in treating the patients you know, hearing everybody’s unique stories and seeing what the patterns are and seeing And what works and what doesn’t. So, no formal training.
Kimberly Warner – Unfixed Media
I mean, but but really, I mean, I think the best kind of education is what you just named as sits on on the job and hearing that so many different types of stories and seeing even even when I started working with Vita three years ago, I was astounded to know that there are people, you know, like me out there, but then a whole diversity of other walks of life that were also experiencing the same symptoms. And it’s just how do we learn that from a textbook? Right. So
Cynthia Ryan – VeDA
real quickly, Marie, can I can I ask for just clarification on one thing, you were talking about CEUs or continuing education units, the extracurricular training, so and you were saying that there’s there isn’t like a training program specifically for physician assistants or nurse practitioners or a PPS? Would you I’m really familiar with the training programs that there are for physical therapists, especially, would you be going to some of those training programs so that they are you talking about training programs that might be you know, crossed specialties?
Maria Machala
Yeah, so um, the way I’ve done it, I guess, an e and t, we have otology and neurotology. associations, and so learning a lot there. Those are for physicians, but you know, a PPS who specializes in this really benefit from from these. And then I’ve gone to the the American neurologic society, those meetings talking about migraine, we see vestibular migraine a lot. So kind of picking and choosing, you know, based on what your interests are, you can choose what kind of education you want. Gotcha.
Cynthia Ryan – VeDA
So you are basically training with the physicians?
Maria Machala
Yes, yeah, for the most part. Awesome. Yeah.
Kimberly Warner – Unfixed Media
Lindsey, I hear that you’ve created a program to help educate primary care providers. Is that true?
Lindsey Mwesigwa
Yes, we do more than just like do primary care providers. But yes, I did to get into starting to educate like any physicians, even nurses and stuff, like in the health care system, I work now. Hopefully, maybe we can grow that outside of our healthcare system one day, but yes, so I got into it, because like, when I when I came back to work, like I was off for three months, like during, like my diagnosis, and trying to get back to like a place where I could work again, when I came back to work, it was so hard, like, I thought I would like going back to like the best like scenario I could be. And like, I work in this great big health system, like everybody’s gonna understand what I’m going through, right? Oh, that wasn’t, that wasn’t the case. I needed more of like a transition to get back into like, this type of environment. And they, a lot of people just didn’t understand, like that vestibular system and like, how, like environments and stuff can really throw a person off. So I was, I was getting a little frustrated when I came back to work, like, why can’t everybody just understand, like, when I’m going through, and like, I know, like, I need to be like, Oh, my full game, you know, taking care of patients. But I’m like, if I get a little dizziness here and there, it doesn’t mean that I can’t necessarily work. Like I was learning how to handle it myself. But people were understanding that so then I was like, Why should I be angry at these people, or like, frustrated with them for something that I didn’t even know myself before it all happen to me? So I knew from my experience and getting the education through my experience with having it, so why don’t I turn my frustration into education for them. So started is like reaching out to like, some of like the hospitalist and stuff that I knew very well. They weren’t really like sure, like how to get you know, that education. So I was like, one day, I’m like, You know what, I’m just gonna send an email to the director, I’m just gonna go for it. And I’m gonna see if I get a response or not, but I’m gonna tell them all the reasons why I think this is important. And I got a response. And they did. They did think it was important, especially, you know, haven’t been a patient of theirs to themselves and just how much more like they could get from the education. So we like me with our hospitalist group or neuro groups within our system, and then we do a Nurse Residency Program here for new nurses. So I think it’s really exciting because, you know, coming out of school, a lot of them don’t know about like vestibular stuff so they’re getting And so learn about the vestibular system as they’re starting, like their new careers in healthcare. We provide them like the verbal education. But then my therapist is involved with me, I like roped him into my education because he was just so great at like teaching me so much about the vestibular system and like my conditions that I was like to be the best person to take for that education. So they get to see like some assessments and stuff. They get to see like, my abnormal eye movements and like a little bit of flares. So they can see how, like the abnormal assessments would be another similar patient till,
Kimberly Warner – Unfixed Media
gosh, is this program can be replicated. I mean, I’m thinking all the listeners, I would like to, you know, call the director hospital here in Portland. And, you know, seriously though, is there something that we can eventually see this happening on a larger scale?
Lindsey Mwesigwa
Um, maybe it’s something that we can look into? I mean, we, I’m sure we could, I mean, check it out, but I’m not sure exactly. But I’m like, I’m sure I can be recorded and everything too. So yeah, yeah, maybe something that we can look into should
Cynthia Ryan – VeDA
definitely talk about doing, you know, a formal recording of, we could do a virtual presentation and record it that people could bring to their hospitals. I mean, I think it’s great, as you said, Kimberly, that you would as a patient like to bring something and share your experience with your local hospital. And I think that that’s something that they would really be more even more open to. But and there’s that opportunity as well. I mean, Lindsay and her physical therapist have developed this wonderful PowerPoint that they’re willing to share. And, and I think that, that I mean, that’s, that’s one of the things that brought this this episode together was discussions with Maria and, and the society, for physician’s assistants of Otolaryngology and using, you know, leveraging what they’re doing the awareness that they’re there, we’re stressing that they’re doing so that’s definitely something we should talk about. Line. Yeah, I just I love, I love the passion that you bring to this, Lindsay and I love your attitude that, you know, why should I blame them for not understanding when, you know, I didn’t understand before, you know, you didn’t understand. Or you all come from a place of ignorance until we either experience something, or are educated. And so, yeah, that’s, that’s just such a great perspective. So, so Maria, we all want to know, how do we find people like you? How does someone you know, in in Portland, Oregon, or in Sarasota, Florida, find a primary or an advanced practice, practice? And that’s practice practitioner, or, you know, a primary care provider? Who, who knows about the stimulator disorders?
Maria Machala
Yeah, I mean, that’s, it’s tough. It’s not because it’s not its own specialty. And like I said, it spans multiple specialties. So it’s hard to find somebody who’s interested in it, you know, as a whole. I think you know, I love the Vita directory, I think that’s great. You can find providers that way. But just knowing who, your EMT, your local EMTs are in the area, not all EMTs will see your specializing dizziness, but they will at least kind of know, you know, there’s a good referral network. And then also neurologists, I would say, just knowing who your contacts are in those areas, and how to refer. So and then physical therapists Yeah, yeah, yeah. Physical Therapists, we work with our
Cynthia Ryan – VeDA
Yeah. And, you know, Lindsey, you were saying that, you know, you had gotten to refer to a physical therapist, and then you did end up seeing one of the neurologists first. But, but that is, sometimes what happens for people is they, they, they can see a physical therapist, that you need to have that appointment with your neurologist or an EMT, because that’s the process to get a diagnosis, but sometimes seeing a physical therapist just gives you that, okay, I’m just going to treat my symptoms for now, while I’m figuring out what’s going what’s what’s wrong. And often the physical therapist has a network, you know, and just seeing that one, you can you can find a vestibular physical therapist on VITAS website, and they’ve got networks within their, their local healthcare systems.
Lindsey Mwesigwa
Yeah, and I mean, as a patient, I think it’s like finding that one like physician, or like neurologist, specialist, whoever you feel comfortable with, I mean to be on as a patient, I honestly like I’ve switched neurologists three times already. Because the person diagnose me it’s like, they were great at diagnosing, but I didn’t feel like well managed or like, I felt like things were still progressing. And it was like, I symptoms were pretty severe. And it was like, I didn’t feel like sometimes she always believed me. So I had to find like that person that I felt very comfortable with and fully trust and actually, like, my physical therapist, referred me to a neurologist, and that’s who I see now. So we like did this big old circle, but to get back to where I could have been in like, in the beginning, probably with him.
Kimberly Warner – Unfixed Media
So now that you have your diagnosis, Lindsay, and you’re in good care, do you feel and or have you gone back to the original primary care provider to mean I’m using air quotes educate them, which is probably a horrible word, I’m educate you. But do you find some sort of responsibility to going back? Or do you feel that there is a role that patients can play in that and educating their PCPs? Yes,
Lindsey Mwesigwa
I do think patients can really help like their PCP is, especially with, you know, any type of like disorder that’s not common for like a primary care provider to treat. For me, like my me and my PCP have gotten really close through all this diagnosis, and she has been great. And she’s like, you know, I’ve learned so much from you like, as a patient, and, you know, she’s like, when I look back, like, is there more that I could have done in the beginning, like, I remember, like, seeing her after I got diagnosed, and she’s like, I always keep like, the ER flow sheet up. And she’s like, when I told her stroke color on you, she’s like, my heart hits the ground. And I was like, I totally missed it. You know, like, she was like, afraid to. So with me and her Yes, like, I have taught her so much. And she’s, it’s actually having me as a patient, she’s like, she’s, I’m looking for the word. She’s like, researched a lot more to to learn what she can so but I guess I encourage any vestibular patient, like, just educate anybody you can, whether it’s your PCP, or whoever’s in healthcare, you know, or anybody out there, just let them know about vestibular patients, and well, we go through on a daily basis.
Kimberly Warner – Unfixed Media
Wow, that’s so encouraging to hear how your PCP responded to, and to think about all the patients that followed you that walked into her office that she was able to help more efficiently because of you sharing and walking with her. I just, I that’s really cool.
Lindsey Mwesigwa
Yeah, it’s, it’s really like, even with like, the education like here, and like my hospital, sometimes it’s like, it’s kind of neat. Like, I’ll just have like a doctor walk up and be like, okay, so which was simulator therapy? Where do I send my patient to? Or like my patients having some dizziness? Do you think that they can help with this? And I’m like, Yes, send them. Like, just seeing like, the outcome of it has been really great deal for patients in this area.
Cynthia Ryan – VeDA
Awesome. I love that. So Maria, what what is the future for primary care professionals? Who health care professionals who want to get more involved in treating Dizzy patients? What can what what would you advise to someone who, who wants to get more training?
Maria Machala
Yeah, so Well, one of the things I want to talk about is, you know, because there’s so many different specialties, I think it’s important to have, you know, a point person so what we’re trying to develop here at the University of Colorado, is a specialized dizziness and balance clinic that has anti neurology, physical therapy, all working and talking together, I think, you know, to avoid this bouncing around to multiple people waiting months and months. And one of the best and easiest ways to do that is to have a team of APS, see the patients initially, we can usually get patients in a lot quicker. We can do all the you know, we can do the examination, the diagnostic testing, interpretation, we can do a lot of the management and then have a way to get the patients into a neurologist or an anti surgeon if needed. So that you avoid those long wait times. I mean, really, time is of the essence for a lot of these disorders. You can develop three PD if you have vertigo that’s untreated for you know, months, years, things like that. So So I think, you know, As far as primary care, just knowing who you can refer to, and then using your resources. So there are a lot of great associations that deal with dizziness. You have via I think it’s probably the most well known, a lot of great resources. There’s the association of migraine disorders. I think that one’s really important. I would say vestibular migraine is probably the most common cause of dizziness that I see. I mean, that’s more a neurologic problem. We see it a lot in the anti, there’s a lot of symptom overlap. So just knowing that that is a possibility. Things like many errors, disease, they’re a lot less common than people realize. So just knowing kind of the difference between the inner ear and neurologic causes of dizziness, and so you know, when to refer to a neurologist versus EMT.
Cynthia Ryan – VeDA
So it sounds like what you’re talking about is is a PPS being part of a multidisciplinary team a, in in a comprehensive, balanced clinic, is that
Maria Machala
yeah, multidisciplinary, multi specialty, so physical therapists, audiologist, MDS abps. And then multi specialty. So,
Cynthia Ryan – VeDA
right, yeah, we we definitely know that when people get referred to a multidisciplinary team, you know, in a balanced clinic that has, you know, all the specialties working together is the other key that they that they are, that they get out more quickly. And, and they get, they get a diagnosis more quickly, they get referred to treatment more quickly. So that’s definitely something that VITA is trying to promote is the development of these have more, you know, because they’re right now we we know that they’re in major metropolitan areas. But what if you’re not intimate, major metropolitan area?
Kimberly Warner – Unfixed Media
Yeah, I am imagining that between the work that you’re doing Maria, and obviously Vita, but then Lindsey your work if I mean, we have maybe 500 to 1000 listeners per episode. So if every single one of you listening right now grabs the recording that we’re going to do with Lindsey on her next DCP training. Hospital, imagine how many more hospitals around you know, rural communities and, you know, less, you know, Metropolis communities that are going to have this information. I mean, that’s a big challenge. Yes. Yeah,
Cynthia Ryan – VeDA
definitely reach out to Anita, if you want to be an advocate. We that’s we need more advocates. So definitely, thank you both for for being advocates and for and for helping us raise awareness in your, in your healthcare communities, about the the vestibular patient experience. Thank you so much. Thank you so much for having me. Yeah.
Lindsey Mwesigwa
for having me. Yeah,
Maria Machala
we have a lot of work to do. But this is, this gives me a lot of hope. Yes.
Cynthia Ryan – VeDA
Good message. Definitely. There’s a lot of work to do. But that’s what we’re here to do it. So thank you everybody who’s listening. And thank you, Kimberly, Lindsey and Maria. Thanks for tuning in to ICU this month. We hope
Kimberly Warner – Unfixed Media
this conversation sparked a new understanding of the vestibular journey. And for all of our patients out there, leaves you feeling just a little more heard. And a little more seen. I see