ICU – “I SEE YOU” PODCAST
The Long Road to Recovery
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For many people with vertigo, dizziness, and imbalance it can take months or years to get an accurate diagnosis. Emergency room physicians rule out life-threatening conditions and refer patients to their primary care providers, who may be ill-equipped to diagnose vestibular problems or provide an appropriate specialist referral. As a result, people are often tossed back and forth between healthcare providers, many of whom provide little support or guidance, and in the end may end up with one or more inaccurate diagnoses or none at all.
In this episode of the ICU (“I See You”) podcast hosts Cynthia Ryan (VeDA Executive Director) and Kimberly Warner (Unfixed Media Founder & Director) explore the often long road to diagnosis that many vestibular patients must travel before they finally find out what is causing their symptoms. They invite Dr. Matthew Crowson and vestibular patient Stefanie Adams to discuss this topic, bringing together the patient and healthcare provider perspectives.
About the Guests
Stefanie Adams
Stefanie suffered multiple traumatic brain injuries and had her third concussion in 2017. As soon as she hit her head she felt off-balance and started to sway. Over the next year she developed terrible migraines and dizziness. Eventually, the migraines left, but the dizziness stayed. A year later she discovered that she had a perilymph fistula (a hole in the membrane separating the middle and inner ears) when she got the flu, blew her nose, and the room started to spin. She’s had surgery to repair the fistula and is now a VeDA Ambassador and vestibular advocate.
Matthew Crowson, MD, MPA, MASc, FRC
Dr. Matthew Crowson is a fellowship-trained ear and skull base surgeon. His primary clinical focus is on diagnosis, medical, and surgical management of balance disorders. Dr. Crowson has been a speaker at national and international hearing & balance research meetings and has authored a textbook and numerous peer-reviewed publications in otology, neurotology and otolaryngology. He has served on the VeDA Board of Directors and Medical Advocacy Committee. He also participates in medical outreach work with prior mission trips to Western Kenya, rural Thailand, and the Canadian Arctic.
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.
Cynthia Ryan – VeDA
And I’m Cynthia Ryan, and we are your hosts on this journey of discovery. Welcome, everyone, I am so excited to introduce today’s the topic for our podcast, which is the long road to diagnosis and any vestibular patient will know what I’m talking about when I say that, because for many people with vertigo, dizziness and imbalance, it can take months or years to get an accurate diagnosis. emergency room physicians will rule out life threatening conditions and then refer patients to their primary care providers who may be ill equipped to diagnose vestibular problems or provide an appropriate specialist referral. But as a result, people often get tossed back and forth between health care providers, many of whom provide little to no support or guidance. And in the end, they may end up with one or more inaccurate diagnosis or none at all. So we’re here to talk about why that is why why is there such a long road to diagnosis for vestibular disorders, and we have our guests today both a vestibular healthcare professional and a vestibular patient who are going to share with us their expert opinions and experience. So I’m going to start by introducing Dr. Matthew croson, who’s a fellowship trained ear and skull based surgeon. His primary clinical focuses on diagnosis, medical and surgical management of balance disorders. Dr. croson has been a speaker at national and international hearing and balanced research meetings and has authored a textbook and numerous peer reviewed publications in otology, neurotology and otolaryngology. He served on the board of directors and medical advocacy committee and I have been very pleased to work with him over the years on several really exciting projects. And he also participates in medical outreach work with prior mission trips to Western Kenya, rural Thailand and the Canadian Arctic. Wow. We could have a whole discussion about that. That’s so that’s so fun and exciting. So
Kimberly Warner – Unfixed Media
yeah, welcome, Matt.
Dr. Matt Crowson, MD
Thank you so much, Cynthia and Kimberly. It’s a it’s a pleasure to be here today.
Kimberly Warner – Unfixed Media
Well, we have an amazing patient guest to join in the conversation and share some of her story with you Matt. Her name is Stephanie. And Hi, Stephanie. I’m going to tell you a little bit about Stephanie. She suffered multiple traumatic brain injuries and had her third concussion in just 2017. So not that long ago. As soon as she hit her head she fell off balance felt off balance and started to sway over the next year she developed terrible migraines and dizziness. Eventually the migraines left but the dizziness stayed. A year later, she discovered that she had a perilymph fistula, which is a hole in the membrane separating the middle and inner ears. I’m sure you know what that is Matt. She’s had surgery to repair the fistula, and is now a vida ambassador and a vestibular advocate. So welcome, Stephanie.
Stefanie Adams
Yes, thank you so much for that warm introduction. I’m really excited to be here.
Kimberly Warner – Unfixed Media
I think let’s just jump in. I’m personally excited about this conversation. My diagnostic journey was very long years. So Stephanie, let’s start with you. And I just want to hear a little bit about your vestibular diagnostic journey. I know it’s long, but to see how we can kind of truncate that and especially touching on how many specialists and physicians you actually saw during that journey.
Stefanie Adams
Yeah, I’d love to so, you know, I had, I was a clumsy college student is what I like to say, I got two concussions in college, you know, they weren’t that serious and I was able to recover pretty quickly. But it was the third concussion that really did it for me where I hit my head on the back of a wall and I just immediately felt myself walking sideways. And it kind of progressed from there over the next few years. I got migraines I was in and out of the hospital with and eventually at some point the migraines really subsided like you said and the dizziness stayed so I during that time, I think I saw over 10 doctors, and that was only up until 2018 And then I actually got really sick in 28 tiene, which is like a flu. And I remember blowing my nose really hard. And then I’ve just everything popped. And then the next few days, my just felt like a little bit more vertigo and off balance. I didn’t really experienced that before. So it was terrifying. And then eventually in 2018, I remember waking up in the middle of the night, like everything was spinning, like it never stopped. And I was like, What is this? Like? Why can’t I see like, Am I on a boat? Like, am I in a dream, but yeah, I woke up and then the vertigo just never stopped. I you know, it’s eventually subsided wasn’t as serious to the point where I could start walking. But at that point, I was like, I need to see a doctor. I don’t even know who to go to. But I went to an EMT, they did the the maneuver, what’s the maneuver called epi. And I remember it helped it subside for a little, but given I didn’t know is a parallel fistula. Like any type of pressure, any type of flying or any type of lifting kind of exasperated the symptoms. And I had no idea that this was causing it. So my first assumption was going to neurologists and going to EMTs. And just kind of taking it from there. And I think over the course of 2018 and 2019, I think I saw over 20 doctors, and yeah, I was working a full time job, like just a 23 year old trying to make some money. And I really couldn’t because I was just so sick and wanted to see doctors and get answers. But you know, I never really stopped looking just because I had a gut feeling. It wasn’t just stipulate migraines. I was diagnosed with the stimulator migraines, I was diagnosed with anxiety. I was diagnosed with everything, but perilymph is show up. And it’s what what was interesting for me working a full time job is the computer work. And that was really triggering for me. And because I thought there was something wrong with my eyes, I actually went to an ophthalmologist and her name is Cheryl Israilov. She’s in New York, and she focuses on hetero Phoria. In your eyes, where sometimes a traumatic brain injuries, your eyes don’t converge, or my eyes were just like going all over the place. I was telling my doctors that one of my scariest symptoms was my eyes would like torque like this, and it would make my whole body drop. It was pretty scary. But I went through an ophthalmologist and she was like stuff like, I don’t think you have anything wrong with your eyes. I think you have something in your ear. And I think you have a parallel fistula. And that was kind of the first time I was introduced to it and I went to VITAS website to kind of look through doctors. I actually went to Facebook to see if there were support groups for perilymph fistula because I just I didn’t, I didn’t know what it was and started looking around. And I saw that there was a doctor close to me in in New Jersey, Dr. Ashley wack, Ashley P. Wacom. He’s amazing. And he was my last resort. I was I emailed him on a whim and was like, Hey, I 100% know I have this, I have all the symptoms, like what are the chances you’ll see me in the next week. And at that time, I was actually on medical leave at work, because I’d have gotten so and he emailed me back within the day. And he was like, I’d love to see you like, let’s get you in and let’s get you in for some testing. And I just went to New Jersey, and he diagnosed me within the same day after a bunch of testing and the CT scan and confirmed what I’ve been thinking for that at that point a year. And it was liberating. But yeah, it was a long journey to diagnosis, I think over four years, but yeah.
Cynthia Ryan – VeDA
Yeah, you said 10 doctors even before the perilymph fistula thing happened.
Stefanie Adams
Yeah, because I I guess I just had so much anxiety that I had thought like it was like food issues like the gut brain, you know, interaction like I was just I didn’t know which way to go. And a lot of the times I was just pointed towards anxiety. So you know, it kind of just from there, it just kept looking and looking and looking and never stopping.
Cynthia Ryan – VeDA
Right. Wow, that’s, that’s crazy. And I also think it’s interesting that how you got referred to Dr. Wacom was through a vision specialist because we, we’ve heard and we we work with neuro visual optometrists, we sometimes refer people tuturro visual optometrists, because there is an eye vision connection in with some vestibular disorders. And they are, excuse me more more aware of and I love that she said, it’s not your eye. You know, that’s it shows us that they’re not just trying to diagnose vision problems they are trying to, it’s a multidisciplinary team working together to get you to the right specialists. So I love that she
Kimberly Warner – Unfixed Media
knew but that seems unusual though, too, because most doc specialists are going to just diagnose within their toolbox. So I feel like you found someone pretty special that I’ve thought of all at least,
Stefanie Adams
it’s a it’s now just coming to me. I remember posting a Facebook status like looking for a doctor who were Did nerve visual and it turned out that, uh, one of my sorority sisters, it was her mom. And she reached out to me on Facebook was like, Hey, you should see my mom like, she does this blah, blah, blah. And that’s how I got connected to her. And she was amazing. Like, she, like every symptom I described. She was like, no, no, no, like, it’s not your eyes. Like it was just something I hadn’t even thought of before. And she was the one who made me stand up. And we did this, like tests where I like marched in place. And she could see that I was just like, spinning and she was like, Oh, my God, like, your eyes are fine. Like, it’s your ear was like, wow, yeah, it was crazy.
Cynthia Ryan – VeDA
So Matt, can you listening to Stephanie story? Tell us tell us about like a typical patient that you see in your practice? And how did they eventually end up in your office? How do they find you? The neuro otologist? Which, as we know, I hate to say it is there are few and there are very few of you out there few and far between your worth your weight and gold and then some.
Dr. Matt Crowson, MD
Yeah, well, it’s really happy to and you know, Stephanie’s personal story is very personal, but also very common to a lot of people as far as their individual journeys on how they arrive at, you know, their, their terminal diagnosis of, of their vestibular disorder, as example. So this is kind of a statement more on the state of vestibular medicine that it is very fractured, and you don’t have anybody that has is a one stop shop, because of the nature of the balance system is your brain, your ear and your eyes as well as your somatosensory system. And there isn’t there isn’t a specialty that encompasses all the all those domains. And so but there are, as Stephanie points out, there are practitioners out there that aren’t just clinicians or MDs, like it’d be PTS that are very knowledgeable that we asked them ologists, it could be neuro optometrists or neuro ophthalmologist that are dialed in and kind of have a broader search field in their mind of what could be going on beyond, you know, as can we say, what’s what’s in their narrow toolbox. So that’s fantastic. Stephanie found those resources. And I would say, you know, the patients that we see at our, you know, rather, you know, tertiary or quaternary level have a severe clinic, as well as a lot of Stephanie story. And so far as they’ve seen 10 to 20, or so far, typically, it starts off with primary care and spins out of out of, you know, kind of disjoint, or it kind of isn’t a very, very nonlinear path after that, of course, in FTO, as we all know, he has done some research on this previously, and has shown that the average number of practitioners that is their patients see is you know, exceeds, you know, double digits in most cases. So see that is this kind of phenotype of multiple provider visits, not not seeing and arriving at material diagnosis very quickly, unfortunately, is very common.
Cynthia Ryan – VeDA
Yeah, yeah. It’s, it’s interesting to hear you say that, how, how many providers a patient that you’ve seen, has, has seen and that they come from, from everywhere. It’s not just from your primary care provider. And I think that that’s something that we, you know, we internally, we’ve talked about, is, you know, what can we do? And that’s, you know, I know, this isn’t the topic of today’s conversation, well, just, you know, plant this seed, what can we do as a community as an organization to better prepare primary care providers and other primary sources of referrals to specialists like Matt to recognize vestibular dysfunction amongst all the flavors of dizzy, there are so many things that can cause dizziness. So how do we help them to differentiate between vestibular and non vestibular forms with dizziness? I know that’s a whole nother conversation. So we can save that for another time.
Kimberly Warner – Unfixed Media
I’m just curious, Matt, is it frustrating to you? I mean, you’re so maybe used to this when a patient comes in, they’ve spent two years of their life trying to get to you but didn’t know that you existed? Is it? Is it frustrating to you? Or do you is it just sort of like so commonplace now that you just, I’m just curious how that lands with you. Yeah,
Dr. Matt Crowson, MD
I guess this is a good point for me to add, where my perspectives don’t necessarily represent those of my employer, but I would, I would say, you know, unfortunately, a lot of a lot of practitioners out there who you would think classically you shouldn’t be dealing with these sorts of things by special deep don’t really have don’t really aren’t interested in this stuff. And then what I mean by that is a lot of DNTPs are interested in vestibular despite being an EMT, a lot of neurologists are not interested in vestibular despite them being neurologists. And so it’s and that’s just a fact of, you know, we can get into why that came, why that may be the case. There’s all sorts of economic incentives, not to see vestibular patients and all sorts of reasons why that’s the case. But but that’s just the reality and happy happy to double click on that a bit more if you want, but it is frustrating, but having kind of grown up, you know, so to speak on the inside of this industry. I kind of understand, you know, at a grassroots level as to So why this? Why is the system is fairly dysfunctional by frankly, you know, which is why you will have Stephanie’s journey of seeing way too many providers. I mean, like, if you look at healthcare assistants perspective, that’s not efficient at all, that’s very costly to the our societal system. And it’s not how we should be doing, you know, vestibular medicine, right, that we probably could all agree on that. And anyway, so yeah, so it is very frustrating, but it’s the State of the Union, though, you know, and and like I said, there’s there’s some some reasons why maybe historical reasons why and also some current issues while we arrived at this, but it’s, it is the state of vestibular medicine as far as if for many people, for many people, I would say,
Kimberly Warner – Unfixed Media
you said you could double click on that I’m dying to know why. Well, I mean, just, you know, in a small way, I’m really curious, why aren’t the EMTs and the neurologist typically interested in vestibular?
Dr. Matt Crowson, MD
Sure, and I mean, in Stephanie’s case, she had a, she had a surgical fix, right, or at least at least, you know, that was kind of a ride that having a fistula, and then there was, there’s a surgical procedural six for that, at least in the United States, how physicians and conditions are reimburses procedures. And, and we, as far as you know, because that’s how our system is aligned from a setup perspective. And so many and T is again, as I’m not a neurologist, I can’t speak too far out of my scope, but at least for en ti is I mean, we were originally trained as surgeons, and we’re, you know, that’s kind of our primary, you know, kind of offering to the healthcare world is surgery of the head in the neck. But we do also do medical management of head neck disorders, but but by and large with how our healthcare system works. So the student states is that we get reimbursed a lot for procedures. And so therefore, in order to, you know, keep the lights on in your clinic, or if you’re working for a larger practice or hospital group, you’re incentivized to do see and handle conditions that are procedural in many cases, vestibular medicine and vestibular diagnoses are not right. So vestibular migraine, not there’s, there’s no surgery for that PBV. There’s no procedure for that triple PD, there’s no procedure for that many years. In some cases, it can get to the point where, where we think we’re doing some procedures, but by and large vestibular patients are not very procedural, heavy. So therefore, in a model where we are reimbursed for doing procedures, and that’s kind of your scope of training, I think that’s a setup for why many EMTs aren’t incentivized to take on patients who are non procedural in this in this model, that makes sense. Again, that’s a gross generalization. And not you can’t point a finger to your local general EMT and say, Hey, this is why you’re not gonna see me as interested patients. You know, it’s a very, this is a generalization, but I think it is, there is definitely a lot of truth to this, because this is how the model is set up, you know, at least in the United States, and some and some other Western healthcare systems as well. That said, though, that’s kind of like a dark and stormy view, right. But as far as in this in this realm, though, there are a lot of EMTs, you know, kind of sprinkled throughout the country that have a strong and a genuine interest in western medicine and visit your patients. And so they’re out there and very EMTs. And they’re also neurologists, to that I’m taking a special interest in the severe patient because I think a lot of us recognize that it’s, it’s kind of like an orphan patient population in many senses, right? It’s not just the domain of en t, it’s not just the domain of neurology, it’s it’s not the domain of ophthalmology, or physical therapy, there’s kind of like this doughnut hole. And there’s no one quarterback clinician, defined by a specialty who takes care of that patient, you know, A to Z and so so therefore, that’s why the reasons why this is this isn’t as fragmented as far as care delivery.
Cynthia Ryan – VeDA
And I’ll just put a plug for a another interview that we’re going to have with the chair of our vetoes medical and scientific advisory board, Dr. Joel Goble, in a month or so on the talking about the multidisciplinary to vestibular care and and why that’s necessary and how that can be, you know, maximized for for what what does it look like to for a vestibular patient to get the most the most appropriate care from a multidisciplinary team, all of those specialists working together, so keep an eye out if you haven’t signed up for me this sorry, blatant plug, but if you haven’t signed up for his mailing list, do that. And then you’ll you’ll get a notification about that when it comes out or just check out our, our YouTube channel. So Stephanie, I’m just curious, you know, we, you mentioned the 10 doctors that you had seen initially. And then you know, after that, can you and Matt was talking about all of the different specialties. Can you like count, you know, how many primary care EMT neurologists specifically you saw and I’m actually also interested because you talked about some exploring some things outside the vestibular realm. So I’m like gut issues, what other kinds of specialists Well,
Stefanie Adams
just to add to what Matt had just said, and I was going to share this right after, but I had seen multiple grantees and part of the I’m in Boston right now. And I moved to Boston just because they had the, one of the best is ear holes. So I thought maybe I could get some help. But I saw many EMTs. And there were two EMTs, in particular, where I’d said, like, I think I have a perilymph fistula, and one of them was like, okay, but the other one was like, I don’t believe in that you’re wasting your money, like all of this stuff. So he kind of strayed me away from thinking I may have had this, what I found just working with different end users that they either believed in it or didn’t just based on their practices. And I’ve, it was frustrating, obviously, but it no matter what I still went to the doctor that I thought would help. But I found most of my answers outside of going to EMTs, I went to a holistic doctor, a holistic chiropractic doctor who focused on the gut brain interaction, and she helped me with she was also a vestibular rehab therapist, and she’s here in Boston. And she helped me a lot with just like focusing and doing the exercises that helped my eyes really focus, especially after I have prism and these lenses that helped my eyes kind of gin focus. So she would help me especially on days that I was working in the office really helped my eyes like focus and do exercises that would help me walk as well. So I found a lot of my answers and a lot of help from a doctor, like outside of like your normal practitioner. And yeah, multiple grantees, this holistic doctor and neurologists, you know, my experience with neurologists, were just getting, you know, on, on pharmaceuticals, which I ended up doing and helped me a lot. But you know, I always had an inkling that it was something outside of it. But yeah, definitely different types of doctors, but randomly found my surgeon through an ophthalmologist, which is nuts.
Cynthia Ryan – VeDA
Well, one of the things that your journey kind of highlights to me that we’ve heard before we’ve talked about this before, is, if you if you’re you go to a medical doctor, and you don’t get a diagnosis right away, or you don’t get an accurate diagnosis, you end up going seeking out or even being referred to other care providers that will treat your symptoms. And without a diagnosis or without an accurate diagnosis, which is definitely not optimal. Yeah. But I go ahead,
Stefanie Adams
I found that, you know, after each of my concussions, I did go to a primary care doctor, who would then refer me to a neurologist who would then refer me to, you know, an EMT. So it was kind of that route each time. But after the third one, I’ve kind of just like, like, in a different directions was like where we go and girl, and I made the diagnosis. But yeah.
Cynthia Ryan – VeDA
Well, Kimberly Reagan to say something Well,
Kimberly Warner – Unfixed Media
I’m so you know, I just met, you know, you talked about how obviously inefficient This is in our system. And I’m curious what you’ve done to shorten that in your own practice?
Dr. Matt Crowson, MD
Yeah, that’s, that’s a great question. And I won’t pretend to know, to have like the Holy Grail answer, or or be the authority on, you know, how to make this all better. But I think I think what I try to do is use data. And I think, you know, it’s hard to argue with data and facts and criteria, they’re developed by people much smarter than I have than I am rather on on the diagnostic parameters for what these entities are. And what I mean by that is, I tend to think I test a bit more of my patients than perhaps so I’m like my, my colleagues, insofar as, I think things like vestibular testing can be very helpful. I think certain audio logical tests that are beyond the audiogram can be very helpful, but I’m not afraid to deploy them when I think it’s appropriate. What can be helpful? So take, for example, a patient who has, you know, episodic vertigo, and they have some fluctuating hearing symptoms, whether it’s hearing loss or tinnitus, or ear fullness. If you look at the symptom constellation for migraine, and for many years, a lot of overlap a lot of overlap between those two diagnostic entities. And so how, you know, one thing we could try is we could try to, you know, hey, let’s try some migraine meds and see what happens or let’s try some veneers stuff and see what happens. And then, you know, maybe we’re, you know, maybe we’ll, we’ll, we’ll guess right, and maybe it’ll, it’ll go right, but we also can do some other things too. And so we could do some balance testing. We know that many years patients, part of the Menieres phenotype is out there typically is this tabular dysfunction, right? It’s a chronic degenerative condition of the year. We’ll probably see a weakness in one of the years if we test them. So that’s helpful here at masa near we’re also developing a new MRI sequence that that slows down and takes very slow pictures of the inner ear, the cochlea and the labyrinth. For us to see if we can visualize if there is expansion of the fluid In your inner ear system to help us diagnose many years more objectively as an example. So for so for me, I think using data appropriately and smartly and developing new ways to diagnose these, these, these disorders that have a lot of symptomatic overlap is probably the way to go. Because just relying on a hunch, or your gut feeling, wow, the medicine that’s been the practice, you know, for eons is your clinical Gestalt. I think ultimately, when you scale that up to the entire system, I think it generates a lot of waste. And so that we have to really be smart about the data, we the tools, we have, however imperfect, to measure, measure our vestibular physiology or hearing function, and then integrate that into the patient’s story. So that’s, that’s, I think that’s that’s a good way forward is using data to be more specific.
Cynthia Ryan – VeDA
And Matt, so I hear you saying, testing, obviously, is important. And I know they’re the Barony society. It’s an international professional association of vestibular health care professionals. And they’re they’ve been developing these guidelines for diagnosing particular vestibular conditions. Is that something that you think is how does that play a role in in in your practice?
Dr. Matt Crowson, MD
Yeah, no, absolutely. And sort of do a frog in my throat this evening. So as far as using so they they develop these clinical guidelines, as well as criteria for diagnosis, very similar to how a couple of the neurology societies like resemble that international classification headache disorders, really, bullet lists the criteria for making the diagnosis, I use those in my daily practice. So for example, for Menieres disease or near syndrome. We use the American Academy where like ology criteria, but the point remains that like, bullet point two is you have to have low to medium frequency hearing sensorineural hearing loss in order to make the diagnosis. And so what’s really, when patients come in episodic vertigo to our clinic, we say, look at the audiogram. And we don’t see that it really kind of pushes us into other camps like vestibular migraine like vestibular perisylvian, or something else because of of using the criteria. And so I think, for me, I think it’s those tools are imperfect, but invaluable at the same time, because it’s it really, it’s distilling down all these world experts opinions, their lives, in their experience in their research and our objective research base, and to do some actionable guidelines that we could use at a point of care to be more confident in informing our differential diagnosis. So I use them in my daily clinical practice.
Kimberly Warner – Unfixed Media
So what about okay, so Matt, once the patient gets to you, they’re in good hands. But there’s this huge gap between the primary care physician and you. And that’s the part and I Stephanie, I hear your story, my story, that’s the really frustrating leg. How like, I mean, personally, like, I want you to go shake your hand with every primary care physician in the country, Matt, and, and introduce what you do and tell them, you know, put vestibular on their radar, but how do we shorten the gap between primary care and you? And Stephanie, do you have some thoughts about this, too? I’m, I’m, it’s sort of a conundrum to me.
Dr. Matt Crowson, MD
Yeah, I would say, BT has been working on this. So they go well, that plug for our, we’ve had been spitballing and trying to develop some sort of triage protocols on how to how to educate our frontline clinicians, whether they be primary care providers or urgent care physician extenders, anybody really who who sees patient who may be at the frontlines of seeing patients with the initial presentation about vestibular disorder on how to how not to do this, I mean, we can’t can’t really fault primary care for for not, you know, quote, getting it, I don’t think because in room one, they have a potential vestibular migraine patient, they’re having a horrible attack. And room two, they have a patient with diabetes in room three them a patient with, you know, maybe they’ve returned from traveling overseas, they have got traveler’s diarrhea, I mean, like they have a cover so much in their day, that they’re kind of, you know, experts in a lot of little things, but masters of none is kind of, you know, often the refrain use. And so we can’t really fault them too much, because they just have they have a monstrous task, you know, with the, with the knowledge basically at the cover across every part of the body. So I think this idea of, of disseminating this, like a triage tools, you know, through via would be a fantastic resource or some other consensus consortium, I think, as a way to kind of disseminate this, or just scale it across everybody who needs to read it. I think that that might be the way to go. But definitely curious to hear Stephanie’s thoughts too.
Stefanie Adams
Yeah, you know, it’s just thinking about my own journey. And you know, every time after seeing my primary care physician, what I found frustrating is just waiting for a referral. You know, I would go to my primary care physician and say I have these Symptoms XYZ, and they will refer me out to someone. But I oftentimes at a certain point, didn’t want to go back to the primary care physician, if I actually thought I should go to an EMT, I think it’s that gap in between, like, going back and forth to primary care, like the sort of work like what are we doing, even though that’s their job to, you know, focus on your health and your journey, it is that weird gap between like, the patient is the advocate, they know what they want, they know what is wrong with them, they can feel it, they see it, they experience it on the daily like, they, they know what they want, and they should be able to advocate for it, if they want to go to an EMT, if they want to go see a neurologist, if they want to go to a neurotology, instead of you know, going back and forth between that’s, you know, in my own experience, what I found to be frustrating between going back and forth from doctor to doctor and just trying to advocate mostly for myself.
Kimberly Warner – Unfixed Media
So you’re saying, Mike, you would get you would get that referred from your primary care to an EMT? And then they would say, I can’t do anything for you, and then they would send you back to the primary care.
Stefanie Adams
Yep, it would be like a back and forth type situation where you know, I’d go to my primary care physician complain about vertigo, they would send me to a neurologist, the neurologist would say, Everything’s clear. And then you know, I’d say, Well, I still don’t feel well. And then I do a little bit more research, and I’d want to go to an EMT myself, but I found a lot of the times on the phone with an EMT, that office that I thought I should go to, would need a referral for my primary care physician. So it just be like a back and forth process, you know, could never be so simple, but I never stopped. And here I am.
Cynthia Ryan – VeDA
And Stephanie, where you’re where your doctors in communication with each other. Like, if you went to an EMT, and they sent you back to primary care, did the EMT communicate with your primary care provider or what the you know what their assessment of? Yeah, the show is.
Stefanie Adams
So I’m actually a part of this a medical group, one medical, which has been, I found really helpful for a patient who’s seen like many different doctors to be able to manage my own health. And there, they give the referral. And then all of my labs and everything are sent back to one medical to be able to track like my my healthcare journey. So I found them right at the start of my journey. And I found that it was really helpful to have but there were a lot of times where I just went rogue and started contacting doctors myself to be able to, you know, see them and see if they would be able to take me without a referral.
Cynthia Ryan – VeDA
Wow. So even in an integrated health care system, there, they’re still there, all the information is out there, but no one’s taken the bull by the horns, and you help you get a diagnosis.
Stefanie Adams
I had to do myself and Facebook really did it. For me, I will say this doing all my research there talking to other patients and hearing their stories like that is how I ended up like finding, and also finding hope, at the end of the day, knowing that some patients got better, but also never stopping fighting or advocating for myself and going to doctors, regardless of whoever said what, and yeah, which is a very interesting process.
Cynthia Ryan – VeDA
So Stephanie, if there was one thing that you could say is like the big a big gap in the medical system that prevented you from getting a diagnosis more quickly, what would you say that is,
Stefanie Adams
you know, it’s been, there’s a few because in my own experience with having something like a perilymph fistula, that’s rare, or some doctors don’t believe in it, or some doctors don’t diagnose that what I’ve found is, you know, more education in that sense, but that’s only specifically for what my diagnosis was, I think, where I found a lot of the issues was, but like we were just talking about with the back and forth between doctors, like not getting clear answers. And, you know, a lot of my issues, also, were getting my results, getting tests, and then the treatment just stopped with that doctor, you know, say I went to get a hearing test, and then we would do some vestibular tests, and then everything came back clear, like that’s where it stopped. And I think following up with patients continuing that journey, and making sure that they’re taking care of at the end of the day, and not stopping it just because there’s normal lab tests, I see that a lot with a lot of the patients that I talk to in the vestibular community where you know, a lot of patients are just feeling like they don’t have answers, and they have to go to another doctor or they have to see someone else. But that was my experience to like, Okay, I’ll get an audio test done here. But then it’s, it’s clear here that means they’re just done with me, you know, and that’s what I found a lot to be frustrating the the lack of follow up or the you know, stopping treatment what’s what’s the tests are normal.
Cynthia Ryan – VeDA
Kimberly, you talked about that in our last episode when we were talking about vestibular testing and how frustrating it was to you when tests turn out normal. Yeah, you’re left with what are you left with?
Kimberly Warner – Unfixed Media
They send you home with balloons practically, you know, it’s like congratulations and you’re on your own. Yes. i It’s very frustrating and, and I I feel like mean, Matt, you’re probably you found ways to navigate that in the medical system where you feel like someone if the tests are coming back normal, and there still isn’t a diagnosis, what do you do?
Dr. Matt Crowson, MD
Yeah, that’s a great question. And I would say, like, as an example, like, if I’m testing my, my stereo typical patient, where I’m like, you know, I think we need a little more, you know, objectivity on how the ear is working left ear, how that would have to work. And that right here is working. And then yeah, I think 70 is quite right. And the athlete, you have to get these normal tests, you know, they kind of don’t know what to do with yet, right? Kind of like, well, I guess, you know, washing my hands of this. And there we go. But Nick, the classic example of we’re thinking like manures versus migraine, I would use that data points to say what’s great, hey, no evidence of inner ear degeneration and your left ear, your right ear. From a studio perspective, This shifts the our probability now to other diagnoses on your differential, and really knocks down things like mid years or having Vestibular neuritis, or in a more rare situation having bilateral vestibular loss, because we’re not seeing that in your data. Now, we think of other other possibilities that can cause episodic vertigo, or daily disequilibrium, or whatever. So for me, it’s more of like a reweighting of the data now, and rewriting of the hypothesis as to what’s going on. It is it is true that the neuro otologist in your community who may be a vestibular champion advocate with the data may not be the person who is the best person to then quarterback, what’s going on with you in some cases, but if they’re there, they should be able to hand you off, you know, delicately to the next person. But as I said, it’s very rare that like, there’s no real training pathway, like I’m not double boarded in neurology and EMT, like, that’s probably the way to do this, he has potentially and then PT BB more than PT as well, that’s probably the way to tackle you know that as a specialty of like that. That’s your medicine specialty. But that doesn’t, frankly, doesn’t exist. So handoffs, and some cases do need to happen, but we have to be thoughtful how to execute the handoff, making sure it’s not into the ether, but to like the next best person. That makes sense. Yeah, I
Cynthia Ryan – VeDA
have I have a question that is totally off what list? It’s on this topic, but not something that, you know, we we were thinking of this? What about artificial intelligence? You know, what about tools, and I know that there are some things that are being developed out there that aren’t necessarily implemented yet. But tools specifically for vestibular medicine to that would help even primary care providers or any one on any, any, in any specialty, just, you know, plugging you keep talking about the data, plugging the data, and then shoot out, you know, not necessarily a diagnosis, but a ruling out or ruling in of where the patient could go next.
Dr. Matt Crowson, MD
Yeah, yeah. And this is a area near and dear to my heart, because some of the research I do is in machine learning and artificial intelligence. And I think there’s a lot of opportunity. But as it stands currently, what how we train these models, these AI systems is based off of like, some historical data, so we’re kind of like trying to train it on the best practices and scale that up and replicate that everywhere. That’s kind of how we’re, you know how modern AI systems work in that sense. So and so if we if we are able to give it the best data, give it the best gold standard training for the model, then perhaps we can achieve we can arrive at a situation where the system be very effective that you’re producing a rank order list of possible diagnoses. And then from there, we can use our judgment to say okay, because migraine is number one, maybe have you see a neurologist who actually believes invested your migraine, which is a whole separate issue. But that might be that might be a way to use these tools is to help kind of this triage process. And that’s it. We’re also trying to use this technology also to use it on existing data like the vestibular testing data, like your MRI that you may have had to see if we could find lurking or hidden signals that you have in yours or migraine, or Vestibular neuritis in that data that we already have. We’re also trying to use these tools to squeeze more juice out of the out of these lemons that we have from from the datasets and the tools that we use today.
Kimberly Warner – Unfixed Media
That’s brilliant. I think there’s some something there, Cynthia and Matt. I mean, it was just listening to a podcast the other day about where AI AI can go and I mean, Facebook, for example, is using it for ad generation so that we can have all these like catered adds based on who you are as an individual. I mean, these algorithms know so much about us so that we’re used in a different way to understand our experience. says with certain disorders it could be, really, really abbreviate this process. Yeah, Stephanie, I’m realizing actually, let’s, let’s go back to the patients. For a last question here. And Matt, you can follow up as well. But I really want to know what your message is to the patients out there that might be listening and are still on this journey. And don’t have Matt in their toolkit and are feeling like they don’t have any helpful answers yet. What do you have to say to them?
Stefanie Adams
I will say, and I was thinking a lot about this last night is the one thing that I don’t feel like I had was someone telling me to don’t stop, don’t stop, don’t give up like there is there are answers, there is an end, you know, I was struggling a lot with just living my everyday life and trying to be like a normal, like, I was 23 years old, like, I’m supposed to be partying with my friends like, and just working a job, but I had to stay home and, and sit and on my couch because I couldn’t walk or see, the one thing that I wish I had was just someone telling me that don’t give up, if I had it inside me. But don’t give up like gets better. Like, just don’t give up hope and keep advocating for yourself. Like I can sit here a few years, years later and look back at the version of me and be so proud of her for not stopping and not giving up and going to doctors going out of her way to email doctors and talk to patients like it just it’s it’s a it’s an interesting journey. And I’ve seen that I work in the pharmaceutical advertising space. And I see patients doing that all the time. And, you know, they don’t stop advocating for themselves. Because if if we’re in a system that’s not working in our favor, then we should be able to, you know, do that for ourselves in order to help ourselves because, you know, if if we can’t get help from the system that we’re working with, we might as well help ourselves if so, the one big message is never give up. Don’t give up hope. Like it always gets better.
Cynthia Ryan – VeDA
Peer support is so important, you know, validation from other people who are experiencing what you’re going through. And there are lots of resources out there for for that. So, Matt, what would you say to people who are in the early stages of their vestibular journey in terms of how they can get on the right path? How do you get on that path to find you?
Dr. Matt Crowson, MD
Yeah, no, absolutely. And I think despite all the challenges that we’ve we’ve unraveled here in the past, with answer so and the discontent that we have with our current system, there are a lot of caring professionals out there that really want to take care of us to their patients, whether you’re in the southeast USA in University of Miami, you got Vanderbilt, I mean, everywhere in the country, that we aren’t caring professionals that want to take care of us to be our patients. It just may not be in every every town in every city, but they are around and I think you know, when when sometimes using a little bit of the lingo, you know, kind of in your triage console talking to the person who’s booking your appointment is hey, does this patient is this physician take care of this tubular migraine? Or is patient? Or is it sorry, this physician or this or this provider, you know, treatment here, I think you’re kind of doing a little bit of upfront self selection may help reduce some of the some of the inefficiencies and you’re seeing somebody who’s not, you know, probably maybe investor aligned with what you have. So that’s that’s one way to do it. But while we do see patients from all over the country, we’re where we are, I do think that our caring professionals in all four corners of the United States, and it’s just as we all know, it’s a continued battle to figure out how to find them and stuff. But uh, Stephanie, you know, so pointedly said, I mean, you just can’t give up. They’re out there. The answer is out there. And it’s just, you know, with so hopefully the some of the tips and tricks we talked about today, we can shorten that journey, you know, how or just even just a little bit would be great if we can.
Cynthia Ryan – VeDA
Yeah, you know, a question that we’ve been putting out there to help patients screen healthcare providers is asking them, what percentage of your caseload is dizzy patients? You know, it’s not even as specific as veneers or vestibular migraine, but just Dizzy patients. How many Dizzy patients do you see a weak? That’s a good one.
Kimberly Warner – Unfixed Media
Yeah, it’s a great one. Wow. Well, thank you, Matt. Thank you, Stephanie. It’s obvious after this conversation, there’s so much room for improvement and progress. But we’re getting there. Right. And I love what you said, Stephanie, that don’t give up and that you know, there are caring professionals out there. I love that you reiterated that because I I believe that to be true. And I just really appreciate your input on this topic. And Vita, of course, has a provider list of all those providers that have seen Dizzy patients. So that’s a good place to start.
Cynthia Ryan – VeDA
And I want to thank you both also for the work that you do to advocate for vestibular patients, you know, serving on Vita committees. and and being you know, an advocate for yourself Stephanie and sharing that with with other vestibular patients, I think that that it makes a big difference is that that work that we’re doing together to change the system, changing the medical system is not an easy task. And we’re, we’re not going to we’re not going to do it all ourselves. But I think we all need to be participating in that pushing the needle forward. So thank you both for your work on on advocacy as well. Thank you for thanks for tuning in to ICU this month.
Kimberly Warner – Unfixed Media
We hope 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