This is a transcript from the 2022 Life Rebalanced Live (LRL) Virtual Conference on the topic of “The Vestibular Traumatic Brain Injury Connection.” Learn more about this annual conference at vestibular.org/LRL.
Dr. Danielle Tolman, PT 00:02
Welcome and thank you for joining the Vestibular Disorders Association for the final day of our second annual virtual conference life rebalance live. What an amazing week. I’m Dr. Danielle Tolman and I’ll be your host alongside my partner Dr. Abbie Ross. We are vestibular physical therapist with Balancing Act Rehabilitation, members of VEDA’s board of directors and self-proclaimed vestibular holics.
Dr. Abbie Ross, PT, NCS 00:24
What an amazing week is right we are so thankful for our speakers, our attendees, our patient panelists and all of those who attended an Evening for Life Rebalanced last night. So thank you again to all of you. We’d also like to thank VEDA’s as donors VEDA’s volunteers and VEDA’s staff members for their countless hours and putting together such a wonderful week. With their contributions we’re so pleased to be able to provide the live portion of the event at no cost to our attendees. Now if you missed a presentation, you’d like to re-watch a presentation, we will have those available for purchase.
Dr. Danielle Tolman, PT 01:01
Now before we get started, let’s give a shout out to our event sponsors. First we’d like to thank our gold level sponsor the James D and Linda B Hainlen. Discovery Fund and the University of Minnesota Department of Otolaryngology. Jim Hainlen was the inspiration for this conference having hosted his own in person conference for patients with vestibular dysfunction back in 2018, and 2019. We appreciate his continued support. And we’d also like to thank our silver level sponsors Otonomy and Electrocore.
Dr. Abbie Ross, PT, NCS 01:31
Final day of the conference, today’s topic is the vestibular traumatic brain injury connection now, concussion TBI they can affect a wide variety of people and cause a wide variety of symptoms. So today’s discussion is to really focus on the vestibular portion of recovery, and how that may look different depending on the type of person it’s affecting, whether it’s an older adult, post fall and athlete looking to return to play. We’ll also talk about how a multidisciplinary approach is typically key to recovery and the relevant research around this field.
Dr. Danielle Tolman, PT 02:06
So without further ado, we’d like to introduce you to our speaker, Dr. Carrie Hoppes. Dr. Hoppes an assistant professor and Deputy Director of the army Baylor University to PT program. She is a Board Certified Clinical specialist in both neurologic and orthopedic physical therapy, a certified athletic trainer and a Certified Strength and Conditioning Specialist. She’s also the co-founder of the military the assessment rehabilitation court. Welcome, Dr. Hoppus. Thank you so much for joining us, could you maybe give our audience a little bit more background on yourself and how you got into the vestibular world?
Dr. Carrie Hoppes, PT, PhD 02:38
Sure, thank you so much for the invitation, it’s truly an honor to be with you today. I do have to say that since I’m an active duty service member, these views are my own and don’t reflect those of the Department of Defense for US Army. But I really got my start as an Army physical therapist in San Antonio, actually, as a student in the program that I’m now the Director of. So that has been really just a wonderful experience. So my first duty station was at Walter Reed Army Medical Center. And that was typically the time when we were just really embedded in those wars in Afghanistan and Iraq and our service members were exposed to roadside bombs. And so I had a lot of experience dealing with those with severe traumatic injuries coming from blast injuries. From there, I spent 10 months in Iraq myself, and then came back to Walter Reed again to work in their amputee Center of Excellence. Also over to National Naval Medical Center Bethesda, where I had an opportunity to work with individuals with moderate and severe brain injury, back down to Texas to work at Brooke Army Medical Center, which is a large level one trauma center for the Department of Defense, as well as their center for the intrepid where we help individuals with limb loss and his concussion as well. And then had a chance to earn my PhD at the University of Pittsburgh with our beloved Sue Whitney. And now I’m back here teaching and I’m a guest provider for Brooke Army Medical Center, really specializing in vestibular and brain disorders. And we’ve also started an ALS clinic recently. So I’m branching out just a bit, but really helping individuals that can’t move or can’t perform or do the things that they enjoy help to get back into doing those things like all of my physical therapy colleagues. So that’s me.
Dr. Abbie Ross, PT, NCS 04:25
So impressive. Dr. Hoppes. Thank you for joining us today. Let’s get right into the discussion by first defining what is a brain injury? What is a concussion? Are they the same or different?
Dr. Carrie Hoppes, PT, PhD 04:38
Sure. So a concussion and a mild traumatic brain injury are exactly the same thing. And we’ve tried to steer away from using that term, mild traumatic brain injury because it really freaks people out. And that make that that may make them more worried about their health condition and more concerned but the good news is that most people who sustained a concussion, which is if we defined it, we would say that there is some external force, maybe it’s a blow, maybe it’s a jolt, maybe it’s a rear end in a motor vehicle crash, maybe you didn’t actually get hit by something, but just moving your neck forward and backwards in a whiplash manner on any of those things could cause just a transient a short term disruption in brain function. And that’s that brain function that we see are causing, you know, little problems in our day to day, and that’s what is that concussion. So it really is this blow or jolt to the head that results in a transient disruption of brain function. And that’s what we aim to help diagnose and treat.
Dr. Danielle Tolman, PT 05:50
That’s it. Yeah, that’s a really, really great way to explain what this is, and kind of like where we’re starting from, in our discussion today. What kind of symptoms might somebody have with a concussion or traumatic brain injury,
Dr. Carrie Hoppes, PT, PhD 06:03
You know, they can vary person to person as much can, but I would say often, and what’s most important to our group today is, you know, dizziness is one of the major complaints following an injury, we also see headache, those would be my top two if I had to pick two. But it can also just be this feeling of, we would say cognitive slowing, or my thinking is a little bit slow down. Sometimes our patients say, I feel a little foggy. So we can have those type of symptoms, we can have a little bit more anxiety, sometimes following these things. We could have migraine type headaches, or regular type headaches, sometimes some transient balance problems. The good news is that those usually start to recover within the first three days. But it varies from person to person, I think we’re doing a much better job now. Instead of trying to treat everyone with a concussion is the same in breaking them down into what we would call concussive subtypes. So instead of saying, you have a concussion, well, maybe you have some symptom clusters of complaining of certain things or showing certain signs on your physical exam with your physical therapist or your rehab professional, that say, gosh, you know what, your problems seem to be centered around migraine and headache. So let’s really work on that, and all of your other symptoms might go away. So we try to put these into things like migraine and headache, we try to put them into things like vestibular or oculomotor type problems, we sometimes see these as anxiety and mood problems. And then things that could really affect all of these subtypes could be neck pain, and sleep. So we think of neck pain, and sleep is really modifying that presentation for all of our present or all of our patients.
Dr. Abbie Ross, PT, NCS 07:55
Let’s get into more of the vestibular component, how might the vestibular system be affected due to concussion or brain injury?
Dr. Carrie Hoppes, PT, PhD 08:04
Sure, great question. Thank you. So when it comes to the vestibular system, if we think that maybe this mechanism of this mechanism of injury was a blow or a jolt to the head, we certainly could have, you know, an impact to the head that affects that peripheral system. And I’m not sure who’s on our call. So just when I say peripheral system, what I mean by that is that inner ear detection mechanism of semicircular canals that you utricle and the saccule you’ll and so as we know, that’s a fluid filled system. So if we had a blow or jolt to the head, there’s a chance that there could be some swelling in that system. And that could cause a problem there, we could also have a problem in the brain itself, right. So when we talk about concussion, this is that disruption of brain function. So those areas of the brain, often we think of them as this, this temporal lobe or the side of the brain just above your ear, those are the areas that have to take our information from our eyes from our somatosensory system. That’s a big fancy word for our bones and our muscles and our joints. So those things also have to be integrated or made sense of, by with the vestibular information, that information for our gaze stability and our balance. So you could have an injury inside that ear, you know, deep in the skull where that vestibular system is, you could have a disruption at the level of the brain, or really anywhere in between those very complicated and beautiful pathways in between. So we could have a peripheral problem. We could have a central problem, which is what concussion is, or maybe a combination of the two to help our patients work through.
Dr. Abbie Ross, PT, NCS 09:45
And then how about in terms of specific vestibular diagnosis that we see with concussion? Perhaps BPPV?
Dr. Carrie Hoppes, PT, PhD 09:53
Sure. Thank you. So there is definitely a chance of Benign Paroxysmal Positional Vertigo or those crystals are out of placed in the inner ear, I think we would know going back to the literature that it would be more common to have multi canal involvement following a traumatic onset, it’s also possible to have bilateral involvement. So it’ll be really important that if you do experience dizziness following a concussion, that physical therapist are the rehab professionals that assess you ruling out BPPV first, is really the best thing to do, right, because generally, we’re pretty darn effective at treating that. And that takes that whole component off the table. So we can focus on anything that’s underlying the source of dizziness from the concussion. So it really cleans up our exam, makes our patients feel a whole lot better right away and just kind of simplifies the concussion sequela that we can manage after that.
Dr. Danielle Tolman, PT 10:49
I like the idea of putting patients into clusters of what their biggest symptoms are, because that kind of helps focus or direct treatment for those patients instead of trying to address everything all at once. Could you talk about maybe what the start of trigger would look like after being diagnosed with concussion or traumatic brain injury?
Dr. Carrie Hoppes, PT, PhD 11:09
Sure. So once we’ve made that assumption, since we don’t have a diagnostic gold standard for concussion, but if you for our group, our Department of Defense we look at did you have that mechanism of injury that would account for a concussion, so there’s something that happened, then we’ll ask our patients have you experienced any alteration of consciousness. So that means that your cognitive functions or your brain functions are disrupted, that’s that cognitive slowing, that’s inability to remember things. That’s that confusion, any of those types of symptoms would be alteration of consciousness, it’s that I got my bell rung is what the patient sometimes said, there can also be a temporary loss of consciousness and that means you got knocked out, right? You’ve lost consciousness. Patients often don’t know how long they lost consciousness for. So it’s nice to ask a teammate, or in the military, we call them your battle buddy. We want to know if how long have you? How long word did you lose loss of consciousness that may change our management of you. And then post traumatic amnesia or, or this idea of not remembering events before or after that you had that injury. So if you said, any of those things related to you, and you had a mechanism of injury to account for it, well, gosh, we’re gonna treat you like you’ve had a concussion. And so what does that look like? So from my physical exam, and from what you’ve told me, and your objective exam, or I’m sorry, your subjective exam. So what you’ve relayed to me, I really want to look at what are your life roles, that’s the number one thing is how are we going to get you back to participation. So you may be a wife and a mother, you may be a, you know, a husband and a father, you may be a cook, you may be a social worker, you may be a business person. So what you need to do in your job, and your life roles, and what is this concussion are the symptoms of this concussion, not allowing you to do optimally, and those typically become my long term goals. Those things that you’re complaining of right now, today? Well, we want to try to work on those immediately. It’s good for good for business for me, right? I want to get you to feel better as quickly as possible. But it’s good to get you back into your activities as soon as possible and safely as possible. Those become my short term goals. And so I want to look for things that as a physical therapist I can intervene on, maybe that’s your inability to keep your eyes steady on a target. And we work on gaze stability, maybe it’s those balance problems, and usually those work themselves out. But if they don’t, I’m here for you, right, that’s what we do in PT, we are the ones to get you up and moving. Those things are probably the easiest to manage, like you said that the Benign Paroxysmal Positional Vertigo, those types of vestibular physical therapy complaints. And I think the introduction was wonderful, because you talked about your interdisciplinary approach. And that’s where we have to involve other providers. So most physical therapists can’t prescribe medications, right? That’s something that’s kind of unique to the federal practice setting. So if you have a headache, maybe the right medication at the right time makes all the difference in your recovery, that we can manage that post injury, migraine right away. And that gives you the opportunity to sleep better, focus better, recover better. So there’s gonna be a time when depending on what subtype of bucket you’re in, it might be better if we treat you with that holistic team approach.
Dr. Abbie Ross, PT, NCS 14:49
You bring up a good point in terms of headache. Do you ever have a patient come to you and it’s just not the right time to start from a physical therapy standpoint because the headaches are too intense?
Dr. Carrie Hoppes, PT, PhD 15:01
Sure, you know, I think there’s always something we can do. So it may not be that they’re able to tolerate the level of rehab that I would hope for on day one. But I think one of the most important things we can do for our patients early on after a concussion is education, and reassuring them that, hey, most people get better from this, this is something that’s going to be, you know, gosh, this is going to be a big bother for this week. But I expect you to be back and doing all the good things that you did prior to this in the next seven to 10 days. So that’s probably the most important thing is reassuring them that, yeah, this was important, this is something that happened. But this is something that you can bounce back from most people do. And I’m here to be your coach, right? I’m not going to hold your hand through every part of the way. But I’m going to give you the knowledge and skills so that you can take that and feel empowered to go back to doing what you were doing pre injury. So that’s probably where I would start early on is positive expectations for recovery, and education on what this is and what you can expect from me in the medical team to help you through this. And then it’s what are those little things that we could do just to make you more comfortable in that acute period, so that then we’re opening up that door for rehabilitation. And maybe it’s as something as simple as, you know, chin tucks, or it’s something as simple as some gentle stretches or gentle range of motion, because we don’t want to send you back to your, I would say your barracks room, but we don’t want to send you back home to your to your house. And sit in that dark room with the sunglasses on not moving your head and cocooning yourself. So we need to try to find that sweet spot where we can encourage you to do a little movement start getting a little better, but also kind of pull you back. If you’re going into hard for that.
Dr. Danielle Tolman, PT 16:46
We have a couple of questions in the Q&A that kind of are similar. And they’re in regards to concussions earlier on in life. Can a concussion or history of concussions make somebody more susceptible to vestibular issues later in life or other effects from the traumatic brain injury.
Dr. Carrie Hoppes, PT, PhD 17:06
So as far as a concussion early on, again, these are mild traumatic brain injuries. So we would expect that these would recover completely. So I would not say that I have knowledge of any research to support that assumption. What we do see, however, is ocular motor problems being unmasked later in life. So if you were somebody that maybe had vision therapy as a child, or maybe there was some patching early on, or you did pencil push-ups, or there was these history of some type of eye coordination problem earlier on, and then as you grow and mature, that’s no longer a problem for you. But after a concussion, it’s not uncommon that that underlying eye misalignment problem does come back. And so that is something that your physical therapist, your occupational therapist, your vision specialist, can help work through managing that because that can account for some of those headache type symptoms, some of the double vision type symptoms. So I would say for ocular motor. Yes, for vestibular, I am not aware of anything concrete in the literature for that.
Dr. Abbie Ross, PT, NCS 18:18
When we look more broadly now, we’ve talked a lot about different symptoms that you can experience. And of course, physical therapists are awesome, but we can’t do everything right. What other clinicians might someone with a concussion see?
Dr. Carrie Hoppes, PT, PhD 18:34
Sure. So if I had to pick my team for dodgeball, who would I pick, so I love our occupational therapy colleagues, depending on what the person’s complaints are, but sometimes they are so, so good at managing just those return to life skills for different techniques to help manage just the busyness and craziness of life. I’m often in the military; some of our occupational therapists are the one to do the vision retraining. So that would be someone that I would want to involve the on the team. So physical therapy, occupational therapy, occasionally speech language pathology for some of our cognitive complaints. Occasionally neuro psychiatry or neuro psychology can be involved in that as well. Physical Medicine and rehab is often a good a good place to reach out as kind of a point person to manage the team to make sure that we’re not double dipping on some of the same resources. They can also address some of those musculoskeletal pieces and the neck pain as well and we can work together with them. Someone to do that vision therapy and retraining if they’re in that ocular motor type kind of subset. Those would probably be the ones that I go to first and then as we move to return to duty, um, you know, our athletic trainers also they are wonderful at assessing and managing concussions as well. So I don’t want to leave them out. But returning to play return to duty decision making, our athletic training staff is often involved as well as our strength and conditioning team, our coaches as well, kind of making sure that with exertion, they’re ready to go back into sport or into life. So it’s a whole, it’s a whole group. Not everyone needs everyone on that team. But it’s important to have those resources on your team so that you can refer someone to have that expeditious referral when it’s necessary.
Dr. Danielle Tolman, PT 20:30
There’s been so much more of a rise in concussion awareness. And with that, you know, we have all these other clinicians that can treat in the field with concussion. But do you? Do you feel that this is getting people recognize a concussion or traumatic brain injury sooner and getting help sooner?
Dr. Carrie Hoppes, PT, PhD 20:47
I think it does. What I hope it does is that it makes the community and medical providers more aware that this is important, we want to make sure that we’re not making the mistakes that we made in previous decades of letting that person go back into the football game for the last five minutes, and then we’ll pull them out after those are things that we know don’t lead to the optimal outcome. So I hope it is making us better at recognizing a problem managing it sooner, because we know that chronic conditions are much harder to treat. So this is better for our patients if we identify these things and manage them appropriately early. But what I hope it doesn’t do is instill fear, we have these big movies with Will Smith that say you could have these lifelong problems. And your brain could have these deep down structural changes. And that’s what I don’t want to see happen. I want to make sure that individuals know that this is an important condition. But it is not something that should impact you permanently or lead to severe decline. That’s what I hope is that awareness. Yes. And fear. No.
Dr. Abbie Ross, PT, NCS 21:55
I like that awareness, Yes, and fear no. A little bit broader. Again, it used to be that people thought even clinicians thought healthcare providers thought this person should not be moving, they should not be doing anything, we need them to rest, they need to be in darkness. Talk about the change what changed in therapy and the approach to treatment to bring us to where we are now where we are getting these patients going educating them on ways that they can still participate in life post injury?
Dr. Carrie Hoppes, PT, PhD 22:26
Sure. That’s a great question. So I think it was a combination of both human and animal studies. So individuals that are removing themselves from all environmental stimuli or self-generated movement, don’t do well. And so that’s that cocooning approach, where we just go in a dark room until we feel better. And I think the brain needs that little bit of stimulation to start to heal itself and to recover. And we see that even with other vestibular disorders, right, so if you had a unilateral or a one sided weakness of vestibular problem, we don’t just stick you somewhere and leave you be till that comes back, we know that that’s not going to facilitate return. What do we have you do we have you work into that dizziness, gradually, we give you a target to look at, and you shake your head back and forth, while keeping it in focus. And we tell you to do it. So that’s it’s a little bit troubling, but it’s not terribly distressing. But it can’t be easy either. Or we’re not giving your brain that information that it needs to recover as fully and as quickly as it could. And so concussions, no different, we don’t want to leave you in the dark and just hope it goes away. But I also don’t want to overload your brain so much with so much volume of information and activity from you know, your computer screen and your phone, from going back into your kickboxing routine at the gym or going on the elliptical up and down, right, I can’t have you do all of that on day one, either. But I need to find a spot where you’re moving, you’re getting environmental stimuli, you’re getting that stimuli from just the movement that you’re making throughout the day, so that we can optimally recover. So gone are the days where we lock you in the dark, we still want to protect you from yourself by having you go full charge full speed ahead. But we do need to just gradually return to activity. And that’s what really the role of that rehab professional is going to be is helping you progress through maybe a week-ish approach, or maybe a two week approach of following some progressive guidelines to gradually increase what you’re doing and how you’re doing those things.
Dr. Danielle Tolman, PT 24:35
And these guidelines and protocols have been coming about because of the recent research. I understand that there’s been a whole slew of research that’s been coming out now that’s changing how we approach therapy. Can you maybe talk on a little bit of what’s the most up to date research that we’re seeing nowadays?
Dr. Carrie Hoppes, PT, PhD 24:52
Sure. So there’s just a slew of information and with it, it’s wonderful because it helps guide our practice, but at the same time it opens up so many more questions to what we don’t know. I think what we know today is that education for sure is the most important intervention that we could provide as physical therapists. From there, I think this targeted approach, we would call it precision medicine, right? We don’t want to treat all concussions the same. We want to find an individualized approach to explore these concussive subtypes and manage the subtypes that you have, it is lovely, if your patient only has one problem, most often, they may have multiple. So of these many subtypes, there may be overlap between them. But we do want to address kind of the most important ones for that to give us that individualized approach. We know that pulling someone out of the game or out of the task at that caused the concussion, the moment that it happens is important, right? When in doubt, sit them out, there’s no reason that if we’re not sure that we should leave you in that that sporting activity, we know that if we do a progressive return to activity of gradually increasing your rehabilitation, and what we’re asking you to perform from an activity approach that is better than leaving you kind of isolated and without stimuli. I think there’s evidence that we need to look at overlay of stress before we send you back in to life or into sporting events. So just because you are no longer symptomatic, that doesn’t mean that those symptoms wouldn’t come back if I asked you to sprint and run and jog. So that may delay when we put you back in, we want to make sure that your symptoms are stable with exertion before you go back in. And then I think the other thing is, we are learning that role of that interdisciplinary team that we’re better together than we are in isolation. So that’s where I think the research is currently directing us. I don’t think we’re at the point yet where we have those single isolated indicators of a concussion. Yes, no, I think we’re still working through that, that, you know, these different, you know, will it be? Will it be a blood test? Will it be a cognitive test? Will it be a physical test? The brain is so complicated that I would not expect that we would have one single dichotomous yes, no test for this because it does so many functions. So I think one day, what we’ll see is a series of small tests that if this pattern occurs, that’s a concussion based on kind of an integrated assessment of several things, whether that’s movement and cognition, complaints of symptoms, and we find these patterns.
Dr. Abbie Ross, PT, NCS 27:47
Now, if we take a closer look at one of the physical assessments that may be indicated. Exertional testing, how do you use exertional testing? For what specific patient cohorts for example? Or maybe you do it with everyone? Depending? And how does it help guide your treatment and recognition of okay, this athlete is ready to return or this service member is ready to hit the whatever duties that entails?
Dr. Carrie Hoppes, PT, PhD 28:16
Sure, great question. So there are different testing protocols that are out there. Um, for those that have lingering concussions, the buffalo concussion treadmill test is one that we like to use to help identify maybe that level of activity they’re ready for. But we don’t have the perfect answer on when they’re, they’re ready to go back, I wish we did. We like to give them some type of person specific endurance type task or an exertion type tasks. So for service members, that could be something like push-ups, or that could be something like running and we engage with, you know, cutting maneuvers for some for our sports athletes, as well as our tactical athletes, but we’re trying to get their heart rate up and compare how they presented before that, and how they present after that. I think there’s something to be said for not only that physical exertion and stress that we want to look at, but also the cognitive stress. So oftentimes, we’ll ask them to do some type of memory task with that. And we have to remember about environmental stress as well. So sometimes how you perform inside my clinic with a plain background is not how you’re going to behave when it’s 95 degrees outside in San Antonio, when you’re out in the sun, and those things so we really try to make sure and do our due diligence that we feel confident that the patient is not a risk to themselves, or in my case to their military teammates, and that’s that line. And right now, there are tools to help us with that. But we rely very heavily on clinician judgment and experience and talking not only to the medical team, but for the military also to their command team to make sure that they You’re safe and their team is safe to do what they need to do.
Dr. Abbie Ross, PT, NCS 30:05
You brought up a good point in terms of dual tasking, right? Doing one physical task while you then add in a cognitive task, how do you communicate the importance of that to your patient? Because sometimes it can seem a little funny, you’re asking me about states, or whatever the cognitive task is, the question is at hand, how do you explain to patients why you’re having them do that dual task?
Dr. Carrie Hoppes, PT, PhD 30:29
Sure, I think the best way to say that is it’s very rare in your day to day life, where you’re only doing one thing at a time, we’re constantly barraged with information, just trying to drive your car down the road, if you’ve ever had, you know, children in the back, and it’s Mom, mom, mom, right. So you’re trying to do a driving task, a motor task, you’ve got all this visual input, you’re trying to keep that car between the lines on the road, you’ve got maybe some auditory input from the backseat, because they can’t find their shoes. And so you have all of this competing information that your brain has to manage. So if I was only testing one thing at a time in isolation, I’m not doing you a service and making sure that you’ll be able to handle real life. So it’s important to be able to do multiple things or be able to change your attention rapidly between things. So I think I use the car analogy, probably most, that, you know, never would we expect you to just drive the car and not think about anything else around you at the time, right? You’re gonna run off the road or, or God forbid into another driver, you have to be able to do not only yourself, but the big world around you at the same time.
Dr. Danielle Tolman, PT 31:38
So we have a couple of questions that are kind of similar nature as far as differentiating between what’s coming from vestibular dysfunction, what may be coming from traumatic brain injury, for instance, somebody had asked how do you distinguish between cognitive dysfunction from a vestibular issue versus a traumatic brain injury?
Dr. Carrie Hoppes, PT, PhD 31:58
That is a great question. I think we are working on that. Currently, the University of Pittsburgh and Sue Whitney’s group is exploring the Santa Barbara sense of direction test to see, you know, following a vestibular injury, and whether that is from a concussion or another type of injury or illness. How does that affect our way finding? Dr. Aqworlds work, you know, looking at cognition, I think is really, really important work. She does a great job there. So I think that research is coming on to tell the truth, I don’t know if it matters, what the source is, to me is the physical therapist, regardless of where that cause is, I want to address how you’re functioning in front of me. So I do like to rule out all of those peripheral problems first. So if this is coming from hypofunction, or coming from BPPV, I would address those as you all would, I would handle those like we classically do. But we know that a vestibular problem by itself can cause some of those cognitive problems. And the brain injury by itself can cause some of those cognitive problems. So I may never know the answer to which one or the combination of which, or maybe it’s 60%/40% 70%/30%. I don’t know. But I want to go after those impairments and take an impairment based approach to that.
Dr. Danielle Tolman, PT 33:23
I think that kind of answers the next layer to that question, which was how do you distinguish between a TBI in the cerebellum versus somewhere else in the brain, but I think you did a great job of explaining that we look at function. So we know it’s more central or we know it’s peripheral. And from there, we can address patient function individually and individualize their treatment based on how they present, you know, session to session.
Dr. Carrie Hoppes, PT, PhD 33:46
Yeah, and I think that’s also supported by your objective exam. So if it was cerebellar, I would expect there to be other cerebellar signs to go with that. And that may lead me to take kind of a more kind of movement pattern coordination approach to my treatment. So I would expect that you would have some supporting signs that may push you in that direction. But at the end of the day, it’s probably less important to the patient, if they can do this, then if they can do whatever it is that they have to do for their day. So I do want to identify those, and it’s important, but right now, our guidelines from the Department of Defense and VA, you know, it doesn’t matter the source of the of the concussion, it we’re going to treat it by how they present to us in the clinic that day.
Dr. Abbie Ross, PT, NCS 34:36
I have a question back to BPPV. I, anecdotally speaking have seen some patients who don’t tell you the usual, you know, story about BPPV where I sat up my room spun, but then I test for BPPV and that was the culprit of their symptoms. Have you experienced that and if so, does that then lead you to want to assess people BPPV and most people that come in post head injury.
Dr. Carrie Hoppes, PT, PhD 35:03
You’re exactly right. Regardless of what they tell me, they are getting a quick check for BPPV it’s so easy to check for. It just takes a moment to either side. And so I always do a Dix Hall Pike, and to each side as well as a roll test, the sideline test if for some reason I’m concerned about their neck, that would be a nice alternative. So they it’s just part of my routine, you’re going to we’re going to rule out a hypofunction, we’re going to rule out BPPV just to just to be sure, and it happens all the time. I a non-head injured general officer, so he’s got a couple scars on his shoulder well above my rank, he would experience 15 to 22 second bouts of fogginess that occurred anytime he moved his head especially to pick up a briefcase you know, to exit the room. And you’re like, laying him back and nothing but you know, up beating left torsional the sadness that subsides and you’re like, this, this is vertigo, sir. Like the general doesn’t get vertigo the girl gets transient fogginess. Roger that, sir. But you know, this is what you’re going to do, and we’re going to treat you. So unfortunately, our patients have not read the book. And they do our very best to articulate their symptoms. But dizziness is so vague, that I really do roll it out. And everyone just to be sure, it’s too easy. It just clears up the exam and makes me more confident moving forward to kind of isolate and focus in on your other complaints.
Dr. Danielle Tolman, PT 36:30
Are there any new treatments that are coming out for post concussions and symptoms or syndrome?
Dr. Carrie Hoppes, PT, PhD 36:37
You know, there’s so many things that are marketed and I think time will tell as to whether those are necessary or beneficial. I had a wonderful time walking through our national meetings exhibit hall this past week here in San Antonio. And there are many different things out there, what I would encourage you to do is be mindful of the cost to benefit ratio, right. So what does our person need? Not all of our patients have the availability to pay for big fancy things. And I have not seen comparative effectiveness trials to go head to head to say that big and expensive and amazing is any different than well executed individually identified low cost. So I don’t know if you need anything special, I think we will continue to see better equipment designed to try to mitigate risk both for you know, military members with their protective equipment, sports helmets and pads for our athletes, car manufacturers for you know, vehicle safety things, things beep all the time on, you know, on cars now to tell you, you’re going to back up into something or somebody’s in your blind spot. I think with this awareness that we talked about will see changes in policies and regulations to hopefully remove individuals from play once something is recognized or potentially recognized. We’ve seen that in major sporting initiatives where they have somebody up in the sky box to say, you know, that hit look like that could have been something when you stood up and staggered for a minute you need to come off and be assessed. And so I think we’re seeing things from a policy aspect change as well. And then we are going to start to hone in on precision tests for concussion in the future, even though we’re not there yet. The role of neuroimaging is still being explored for that. Once we know you have a concussion, then the next step will be these targeted treatments. And what will that look like? We don’t have any good evidence for dosing and much of what we do in physical therapy, you know, who’s to say that stretching three times for 30 seconds is the right amount versus three times for 29 or 42. Right. So we don’t have good science for a lot of dosing. And I think that’s lacking in our field. So I would encourage that to be explored. I know there’s good work looking at that. Those are probably the biggest and then that return to duty return to play return to work in life decision making. When are you clear that’ll be the next decisions coming down? Are there different tools or different protocols that would be most efficient and effective in helping clinicians make that decision? So, so much unknown. I think we do our very, very best with what we have today. But yeah, I think we’re gonna see lots of different different changes. It’s it’s rapidly evolving, and we do our best to say stay abreast of all of the emerging evidence for things.
Dr. Abbie Ross, PT, NCS 39:43
I mean, that takes us back to how drastic our approach to concussion has changed over the last 10 to20 years. So just imagine what could happen in the next 10 to 20 years. Another question from our Q&A. Can my symptoms last forever so if some Someone comes in and says, Am I going to feel normal? Again, prior level of function? How do you respond?
Dr. Carrie Hoppes, PT, PhD 40:07
That’s a great question. And it’s one that we see often. To be honest, a concussion is supposed to be this mild traumatic brain injury, it’s not supposed to be a lifelong disruption and function. So while that internal, structural, you know, probably microstructure, again, we’re not supposed to see structural changes on imaging, or it doesn’t meet the requirements to be a concussion anymore. But this acute physiological disruption, and this acute, maybe micro structural disruption, those things aren’t supposed to last for a lifetime. What does last for a lifetime and things that we know, will not for a lifetime, but things we know that make things worse, stress at the time of the incident or injury. So regardless, if you had a concussion or not individuals that presented to an emergency department with this large life stressor, or this large cause of the mechanism of injury, maybe it was a horrific car accident, maybe it was a very scary fall, um, individuals that had stress at the time of the event don’t do as well as those that had an isolated injury or concussive injury. So I think looking at it as this brain thing, like, yeah, that was, that was one thing that happened, but you’re a more important larger person in picture. And so if you’re having these long term symptoms, that might be the event that you anchor on, and you say, Gosh, I was fine before this. And I’ve not been fine, since that might just be one piece that might that have been one important piece of your past. But that is not the whole piece of your past that defines you. I would look towards other things that have gone untreated or unaddressed, I would look to sleep, I would look to anxiety management, I would look to stress and lifestyle choices, I would look to maybe an undiagnosed other peripheral problem, or something else, maybe it’s a vision problem. So maybe you had that concussion, which unmasked and underlying Ocular motor dysfunction from childhood, and now you’ve got just these slight overlap, and it’s ever so slight, until you’ve done computer work all day, and you have this headache. And because of the headache, you’re not concentrating on the words, and now you feel like you’re not understanding those words are able to retain those and you’re reading things again. So it might have just been the concussion is one small piece to a much bigger, important puzzle. And that’s what I hope that team approach will do. So that’s that is my thoughts and opinions on that. That’s an expert opinion, bottom of the pyramid. But I think it’s one small piece of a much larger story. And my dear friend, Dr. Karen Lambert, who teaches our military vestibular course with us, she always throws out the quote, and I think it’s hippocrates. That said, it’s more important what person the disease has than what disease the person has. So I can’t look at this as a concussion. I have to have I have to look at you. And yeah, you had a concussion. But you know what, we can work past that we can get you back to being you.
Dr. Danielle Tolman, PT 43:21
I think that quote was going to apply very well to our patient panel that’s coming up here soon, with some amazing people who are going to talk about their experience, but you kind of actually perfect, perfectly answered one of our questions, which is, you know, are there long term impacts of untreated or undertreated TBI? And it sounds like there can be but it’s a piece of a bigger puzzle. So if you look at that puzzle and address those symptoms, can a patient still see relief, even from something that might have happened a long time ago?
Dr. Carrie Hoppes, PT, PhD 43:51
I think we can. I think our patients give us more information that we don’t always listen to. So I think as I’ve gotten more mature, in my practice, I have tried to talk less and listen more, which was hard for me, I like to talk. So be mindful of the small clues that they’re giving out, pay attention to what they’re telling you, because they may in fact be directing you to the answer for what that key is to unlocking that chronic problem. So I think positive changes can come of it. And I think, you know, we had kind of coined this idea of three E’s of education. So I have to explain to you that this is a concussion, and we expect you to do better. And the thing is, some of these folks have had this problem for a very long time. And sometimes it’s important to let them express what they’ve been through and what they’ve gone through and acknowledge that and then support them and moving forward and then exercise, right. We’re not going to get better if we’re not moving and so that’s where we come in as physical therapists or occupational therapist to get you moving again. So I think if we come at someone who has had a chronic symptoms for a long period of time, we need to meet them where they’re at, we need to acknowledge that, yes, you’ve had a concussion. We need to educate them that most people do well following a concussion. And there should be little doubt or little reason to suspect that they cannot improve based on our assessment. So we’re going to start here. And this is where we’re going to start today. And we’re going to move forward. And we’re going to do that together. As partners in this. There’s no reason to think that they can’t start over or resume a new trajectory, even if it’s been a chronic problem.
Dr. Abbie Ross, PT, NCS 45:35
I love how you’re just injecting positivity in that positive outlook into everyone. And I think that’s such an important piece, not only for people with concussion, but also people with vestibular dysfunction in general. And that leads me to another question, that aside from that positive influence that little bout of hope that you’re giving people, what other tactics or techniques do you use for those who have the psychological impacts of increased anxiety? Maybe some depression going on?
Dr. Carrie Hoppes, PT, PhD 46:07
Yeah, great question. So it’s very patient specific. But often folks do respond to exercise, there’s some natural, you know, hormones and the endorphins that are released with that some individuals that have this over overactive racing thoughts, they do well, to let that anxiety out in some way that’s best for them. Um, so exercise can be a big positive relief. So I think there’s a large role for exercise, sleep is incredibly important. None of us do well, without good sleep, we become more moody and you know, a little bit short tempered without it. So I would look at sleep. Sometimes that also requires interdisciplinary work to get to the source of there is this movement now within the US Army to look at holistic health and fitness, we call it H to F. So we’re embedding, you know, mental health professionals with soldiers to decrease that stigma, and encouraging them to work on resiliency and mindfulness. And so I think there’s a large role for finding that that outlet, whether that comes in the form of counseling, or group work, you know, cognitive behavioral therapy can be very effective in individuals with concussion. And then there’s this spiritual aspect for some individuals, whatever that may be. So I think that’s where we’re headed, is there are places for pharmacology and medicine. But there’s also places for exercise, mindfulness, cognitive behavioral type approaches as well. And that’s what’s so important about the healthcare team to direct it, because it’s going to be different for each person. Sometimes something as simple as closing the office door, and not letting everyone barrage in and interrupt you, it’s your task, maybe you just need to focus on one thing at a time, maybe you need to use your smartphone to set some reminders. Maybe you need to budget time and do a small block of work, and then have that mental break to step away from what it is refresh, recharge and come back. So I think there’s little strategies that could be implemented to help get through that acute plan, or behavioral modifications, not only for the patient, but maybe retraining the patient’s, you know, family and work staff of, hey, this thing happened to me, I expect I’m going to be doing better in a week. But for this week, while I’m on my computer, can we not interrupt me until it’s my scheduled break time, and then all attend to you and what you need. But I’m really struggling to do two things at the same time right now. And I think people would be agreeable to that. So that importance of communication is key as well.
Dr. Danielle Tolman, PT 48:47
Do you find that complementary alternative approaches medicine helps you like massage and acupuncture and things along those lines?
Dr. Carrie Hoppes, PT, PhD 48:56
You know, it has been very effective for many of my patients, I go back to that risk harm benefit, if there’s nothing that’s going to harm you. And it’s not going to cost you an arm and a leg, you’re welcome to try it. Right? If it’s something that I know is not okay, you know, I’m not going to direct you down that path. But if it works for you, and that’s all I need, right, and that’s fine. I think it is very much complimentary, I do want to make sure that our patients get the best science behind something. So if there is some type of snake oil being sold, that really is inappropriate or has no basis, then we do have to steer them away from those things. But individuals do find different things that work for them and if it works for you, then it will work as part of our comprehensive plan for you. So I have an individual right now that I am treating as a physical therapist who is also seeing an acupuncturist and a functional chiropractor. And so those things work together. I prefer when the team communicates and the patient is not the source of the communication, they’re already overwhelmed and doing the best they can. So they don’t also need to serve as the hub to coordinate their care. But I think a multi angled approach is effective, all the better if those angles are in agreement of how to proceed.
Dr. Abbie Ross, PT, NCS 50:16
So again, that theme of multidisciplinary approach comes into play here. Another question along the psychological impacts do you think PTSD can have an effect on the vestibular issues at hand?
Dr. Carrie Hoppes, PT, PhD 50:29
It most certainly can. I think chronic pain and PTSD are probably two of the things that comp make it more complicated to help individuals who may have an underlining brain or vestibular issue. And those are very important things that if we do not address the PTSD and the chronic pain, which also often overlaps with chronic sleep issues, it’s going to be much more challenging to get that individual better. So those are really important pieces. Oftentimes, I’ll tell my physical therapy students that, you know, it’s kind of like a Jenga tower, right. And if you pull a couple easy pieces at the top, and I feel a little bit better, but what if we get to the real root of that problem, if we pull that one thing out, or maybe those two pieces out, all the rest of it’ll fall out, and then we really can make a positive way forward. So very, very important to address, I think we end up as you know, physical therapist or Occupational therapists supporting that line of effort. But while we are a very important part, that team there are other professionals that are going to have to be engaged to make sure that we’re addressing that particular PTSD concern, I would not feel it would be appropriate or within my scope to isolate and manage that particular diagnosis by myself, I think recognizing it as a problem continuing to support your patient as kind of referring treat approach, right, you’re going to be in my clinic working with me at the same time, we need to engage this other avenue to support us in managing this. So kind of bringing those involved would be the way to go about it.
Dr. Danielle Tolman, PT 52:08
Are there any sort of devices or lifestyle changes that you recommend to patients like wearing different light filtering glasses or using different things on their devices or computers to help with symptoms?
Dr. Carrie Hoppes, PT, PhD 52:24
You know, I think if it helps you acutely, that’s fine. I don’t recommend long term adjustments to these things. I would say that would be the true of all things except maybe those blue light filtering things. Right. We are bombarded all day by blue light. So I think those are appropriate. But having you do something drastically different for a lifetime, I don’t know if that’s the path I would direct people down. So I think there’s a very important role of any of those things for the acute management. But eventually those are going to be things that we slowly wean away from in individuals with more complex problems are individuals with stroke that affects visual pathways. You know, there may be a role for Prizm lenses and things in those individuals. But I, you know, I do believe that maybe acutely, we may do something we would not prescribe, you know, prism lenses or different lenses for the long term for for individuals, unless there’s a cause to do so.
Dr. Abbie Ross, PT, NCS 53:32
Reminds me of, sometimes patients come in and they’re so so sensitive to the light initially, they’ve got their sunglasses on, they’ve got their hat on, they’ve got their hoodie over the hat, and it’s really weaning them off that getting them acclimated. Again, it’s not the avoidant behavior, like we’ve been talking about, you don’t want to avoid anything at this point, in terms of getting yourself to recovery. We’ve got another question from the Q&A. Aside from BPPV, let’s say can you seen a nystagmus from a well, can you see Miss Agnes due to a brain injury? Let’s start there.
Dr. Carrie Hoppes, PT, PhD 54:08
You certainly can see nystagmus from a brain injury, often when it’s a central problem, we see that it would change directions or maybe be purely vertical or purely torsional in nature. So what we’re looking for is rolling out that classic BPPV pattern first, removing that and then seeing what remains after that. And we would go from there.
Dr. Abbie Ross, PT, NCS 54:33
Are there any times where if you are the first provider to see this person, is there any central signs that jumped out to you that would say or red flags that would jump out to you that you would say to you, we need to get the neurologist on board or another health care member?
Dr. Carrie Hoppes, PT, PhD 54:50
Sure. So we actually use it a tool in the military, the military acute concussion evaluation to or the mace 2 for short and right on the cover have that nice to it list red flag conditions, things like seizures, vomiting, rapid decline in neurological function. And so any of those things, those are not things that belong in my clinic, and we need to get them to a higher level of care immediately, in the absence of those red flag conditions, then I think it’s appropriate for you to be with me. And I really do believe that our rehab professionals are very well adept to handle these PTs, OTs, athletic trainers are wonderful providers, we get to see our patients often for longer periods of time, and we know our athletes better than other individuals do, because we spend more time with them. So in the absence of something more sinister, they are appropriate to be in our clinic and be managed by us.
Dr. Danielle Tolman, PT 55:50
We have an interesting question from the Q&A, which I’m not sure if we know the answer to per se, but how much force is needed to cause a concussion?
Dr. Carrie Hoppes, PT, PhD 55:59
Oh, gosh, I just had this number in my head, I owe it to you. So the, the Department of Defense was looking at it. And it was, there was so many pounds of this or pounds of that. And I so I think that is a standard at which we based on the best evidence kind of set a threshold for monitoring. And that’s interesting to me to try to put a number to it. Because we’ve tried that in the past, we’ve tried sensors in sporting helmets, we’ve tried sensors on military helmets or on on the body armor. And oftentimes it’s not the force in and of itself that matters, we’ve seen people with big hits, feel fine. And we feel seeing people with little tiny hits be out for a long period of time. So I don’t know if that is fully understood. I think there’s something to be had for kind of a rotary force at the same time, some kind of stretching of axons for a rotation component. So I don’t know if it’s easy to draw that line in the sand. And the reason is, because we’re also unique, right? Your chemistry is not my chemistry, your next strength is not my neck strength. The life events that you have today are different than my life events. So the same blow or jolt for you may be devastating and may be perfectly fine for me and I drive on. So I think more needs to come from that. But right now, a number in isolation. It’s just a number. And so we still treat the person in front of us. We are looking at it’s I forget if we were looking at it power of you know, pounds per square inch, or you know, blast pressures or more force pressures. But there are groups looking at the bench science behind that.
Dr. Abbie Ross, PT, NCS 57:44
We’ve spoken some on where research is headed, what we’re still looking at, but are you able to tell us a little bit about what research you’re working on.
Dr. Carrie Hoppes, PT, PhD 57:52
I love to brag about my research and my collaborators. So tomorrow morning, I will be collecting data on four healthy individuals as part of a larger study with Dr. Laurie King at Oregon Health Science University. And we call it the return study because we’re going to try to return you to duty. But often, the task that we’re giving you involves turning. So we are using small sensors to look at how your head moves on your body. Because sometimes after a concussion or an injury, we sort of get a little stiff and we move on block. So they are doing different tasks. They are running and sprinting and jumping. And then we ask them to do a military specific task like I’m going to give you a grid coordinate, which is something we use to navigate. So I’m going to say echo golf 871246. Now I’m going to have you go run and do that sprint again, when you get back, what was that grid coordinate. And so we want you to be able to do that. Similarly, we’re going to have you walk and then you’re going to monitor some radio chatter. So if it was every time that I Carrie said butterflied, but you Abby said dog, they need to say check and they need to monitor the military radio chatter. As they do a walking task. They also have a shooting task to do to make sure that they’re able to turn their head and body look, notice where targets are and engage the bad guys, but don’t shoot the good guys. So we want to explore all of these things. So that’s a wonderful project across six different sites. So the military concussed service members will come out of Fort Carson, Colorado and Joint Base Lewis McChord, out in Washington State. And we’re setting the standard for what healthy servicemember performances here. So that’s a fun one. We are looking at qualitative or personal factors that may make you more susceptible to recover versus not recover. So we’re going to start digging into who you are as a person using some big machine learning, which is, I think, important to really get it the person that’s in front of us. We’d all also like to explore new technology for just delivering vestibular rehab. So computer based devices, hologram lens type devices that overlay targets or scenarios, looking at dosing looking at the importance of VOR times one or this Vestibular Ocular Reflex, retraining exercise. That’s the bedrock of what we do in vestibular rehab, how to deliver that appropriately and make sure that their eyes are truly on that target for how long so I think there’s some cool things coming. Not my lab, but in particular, I think you will see emerging is this idea of neuromodulation. And so what is that? That’s a big word to say, can we make the nervous system different or more receptive to our rehabilitation things, and whether that is transcranial magnetic stimulation, transcranial direct stimulation, could we tell that nervous system Hey, get ready, we’re about to do some good vestibular rehab, and would making the environment in the brain different or more ready to receive that rehab. I think that’s coming as well.
Dr. Danielle Tolman, PT 1:01:15
So, that is so exciting something so worth looking forward to. We cannot wait for eyes out for all of that. And we want to thank you for joining us today. I think all the information that you’ve provided has just been absolutely amazing. I think we’ve answered almost all of our viewer questions, which was really good along the way. Thank you, thank you so much.
Dr. Carrie Hoppes, PT, PhD 1:01:36
It’s my pleasure. And if it allows me to type in the box, I will stick my email contact information in there. So if there was something that we didn’t get to today, I apologize for that. And we’d be happy to talk to anybody later about that particular topic that interests you. But it’s an absolute honor, thank you to VeDA for what you do to support us. Thank you for what you do to support our military, vestibular assessment and rehab program. Thank you for helping us connect servicemembers and veterans, with providers outside of our Military Health System. So I wish you all the best as you conclude your conference. And thank you for having me.
Dr. Abbie Ross, PT, NCS 1:02:14
Thank you so much, Dr. Hoppes. You basically just did a great conclusion for us, but I’m going to echo it and say that you as attendees, if you wish to see more events like this in which to do your part and connecting vestibular patients with clinicians and continuing to spread awareness. Please consider donating to VEDAs great mission and vision and thank you all for attending. We’re going to pass the baton off to Laura Cala and our patient panelists.
Laura Cala 1:02:45
Hi, everyone, my name is Laura, and I’ll be your host while we talk with some of our vestibular patients and learn a little bit about their journey towards recovery. Our topic today is vestibular complications following traumatic brain injury. And we’re going to talk about what it’s like to have a traumatic brain injury, the dilemma of treating two competing diagnoses, what are some of the worst symptoms, and the importance of finding the right team of specialists. So I’m going to pass off to our panelists and get them to introduce themselves. So I’ll pass to Sarah first.
Sarah Renberg 1:03:34
Hi, everyone. Thanks for joining us today and listening. My name is Sarah Renberg. I’m currently a senior at the University of Michigan in Ann Arbor. I’m studying neuroscience. My relationship with TBI started in January, 2014. I was the lead ice hockey player and had a concussion. I returned to the height of competition, playing the best hockey of my life, and was being recruited (to play hockey in) college. Then the following season I had a career ending injury. It was a bit more than your typical concussion. And so, yeah, that’s, that’s basically what happened.
Laura Cala 1:04:29
Amazing. All right. Can I get you to introduce yourself, Stefanie?
Stefanie Adams 1:04:33
Hi, everyone. My name is Stefanie Adams. I am a marketing specialist here in Boston, working in the pharmaceutical industry. I wish I could say my traumatic brain injury journey was as cool as playing hockey. But you know, I was just a clumsy college student who fell off the bed and happened to get, you know, really bad injuries and concussions. But the one concussion that really set off my vestibular systems was as simple as brushing my hair out of my face during class and hitting my head against the wall, which really triggered a lot of my vestibular system symptoms right away. So I’m sure we’ll get into that a little bit more, but just want to preface that a little bit.
Laura Cala 1:05:20
Amazing. All right. So obviously, we want to go into the depths of your traumatic brain injury. And the event. I know, we’ve sort of briefly touched on that. Can I get you to go into a little bit more details, Sarah, around the events that followed? The actual event of your brain injury?
Sarah Renberg 1:05:43
Yeah, so um, I was, it was away at a game. And so I wasn’t near my home. But I basically started developing all the typical symptoms, I had a pretty gnarly neck injury. And there was vomiting and visual disturbance and it kind of got worse as the days went on. I sought medical care pretty immediately once things got really bad. And we just sort of thought it was a concussion, your average concussion at first. And so we went through the scheme of things with sports medicine, and neurology and started the rehab there. And then we sort of began to uncover more pieces as time went on, including a pretty severe disorder of my autonomic nervous system. And so it was a bit of an up and down roller coaster, and things tended to get worse before they got better. But it was basically we had to uncover a lot of pieces before I got kind of on the right path to healing.
Laura Cala 1:07:02
Amazing. Thank you. And how about yourself, Stefanie?
Stefanie Adams 1:07:06
So yeah, after my first two concussions, you know, I recovered pretty quickly, I did the standard protocol for concussion – just completely relaxed, just stayed in my room for a couple days and healed pretty quickly. I will say after my third concussion, it was a year after my last concussion prior. My symptoms were almost immediate. I was in class, my vision was all distorted, I couldn’t see straight. I was taking a quiz and I ended up failing that quiz because I couldn’t concentrate. And after class, I just remember walking sideways home. And I felt like the world was slanted. And I almost knew immediately this one was different. And, you know, it’s been a really weird journey from that point. You know, I started getting migraines almost consistently. I treated it like the typical concussion, but I didn’t go to the hospital this time, just because of how lightly I had hit my head. And it felt weird to have, you know, the symptoms come on right away after such a, like a small blow to the head. So, you know, symptoms persisted, you know, they treated me. I went to the neurologist, she treated it as a typical concussion, you know, gave me medicine to, you know, treat migraines. And after my migraine pain went away, it turned into more of a similar symptom. You know, I started a job post college, and it was, I couldn’t see straight still, I had vision issues. And you know, it’s been a weird journey ever since I just remember feeling better at some points, and then it coming back. There was a point when I was really sick, I think a few years ago, where my vestibular symptoms actually started getting worse, I had a really bad cold. And you know, what I didn’t know at the time is that I had something called a perilymph fistula which is seen in traumatic brain injury patients who have thinner bones in their inner ears. I’m more susceptible to the symptoms coming off of a traumatic brain injury, but I didn’t know that at the time. So I was sick, blowing my nose and apparently something popped in my ear, and I ended up getting vertigo 24/7 from that point on, and it was absolutely debilitating. You know, I found myself trying to find answers almost every day like, what’s wrong with me? This is not just a typical migraine, like there’s gotta be something wrong and I was diagnosed with vestibular migraines, everything under the sun and it led me to multiple doctors who kind of eventually led me to my surgeon who actually performed surgery on my ear. And you know, since then, it was, I would say that it was probably a three year journey from that day I hit my head leading me to that doctor to get surgery, and that was almost two years ago. Since my surgery, I have been 90% so it’s been amazing. It’s been a really crazy journey. So I won’t bore you with details, but it’s been crazy.
Laura Cala 1:10:16
No, I thank you for sharing, I guess, the big one for a lot of people watching and I know for people with vestibular dysfunction is navigating our healthcare healthcare system. How did your healthcare providers recognize the vestibular symptoms? I know Stefanie mentioned, it was something that sort of happened, a part of the journey. I’d love to get your thoughts on, at what stage was it recognized that there were vestibular symptoms as well. Can I pass that to you, Sarah?
Sarah Renberg 1:10:52
Yeah. So I mean, for me, it was it was right away, I was fortunate to be seen by practitioners that were up to date on the literature, they knew about active recovery as the the first mode of care for brain injury, and, you know, put me right into vestibular therapy and starting to chip away at that. And I think what’s more is that it took some time to understand how fundamentally integrated things are. So the fact that, you know, your body is full of these sensory feedback systems so that your eyes inform your vestibular system and your your like, proprioception in your neck can inform, you know, how your eyes are, and your eyes can inform where your neck is, like, it’s all interconnected. And it’s really cool. And it’s why I’m getting a neuroscience degree. And so, in understanding that, and the layers and complexities of the problem, you have to work with physicians and rehabilitative specialists that really understand that integration. So like, for instance, a common vestibular assessment is gaze stability, which is basically like looking at something and you know, nodding up and down and seeing if you can hold the world steady. It’s really hard if you get hit in the head. And so understanding where the breakdown is, is it cervicogenic in nature? Is it sort of, you know, visual processing? So being able to discern what, and then work with you. And so yeah, that’s kind of like a long winded way of saying that, there’s definitely some trial and error and finding the right practitioners to work with me. And you know, sometimes I’d work with someone and I’d, you know, milk them for all they were good for, and then I’d have to move on to someone else, until I’ve kind of found my magic people, and I was able to overcome most of it. But I think the key when looking for a clinician is someone who thinks critically, and isn’t just gonna channel an algorithm being like, Oh, you have bad balance, and you’re dizzy, we’re gonna put you through the vestibular protocol and not think after that. And someone who’s willing to communicate both with you and other health care providers, that’s a big thing. You want team players. And then three, just someone who was willing to, you know, see me holistically as a person. So at the time, I was a teenager who had just lost, like, what they thought was their whole world, the ability to like play hockey and the elite level. And, you know, like, that’s a lot for anyone. And when you’re a teenager, you’re supposed to be asserting your independence. And all of a sudden, my Mommy had to be with me all the time, so someone who could help me navigate that was an added bonus. And I found that in more than one practitioner.
Laura Cala 1:14:04
Oh, that’s absolutely amazing the amount of information you are able to collect and the fact that you’re going on to study (neuroscience,) that’s absolutely amazing. I can only imagine how beneficial you’ll be to the industry following your successful graduation. I know we’ll all be following you. How about yourself, Stefanie, how did you navigate between healthcare providers? And how were you able to differentiate between your vestibular symptoms? We’d love to hear about that?
Stefanie Adams 1:14:38
Yeah, so like I said, my journey was very weird. I was trying to find answers in any way, shape, or form. When I started getting vertigo, 24/7 That’s when I knew you know, this is something bigger. I was in New York at the time. Like Sarah, I was by myself. I was very scared. I was so young. It was right after college, trying to navigate the post grad world by myself, and also having a full blown panic attack at the same time from having vertigo 24/7, I knew I just needed support. So I ended up moving to Boston in hopes that I would find better healthcare and different providers who could help me with this. And I actually, I think, during my time trying to find a diagnosis, I had seen a total of 30 doctors trying to find an answer. And you know, there were doctors that were great. There were doctors that had said to me, you know, it’s just anxiety. If you go home and eat vegetables, you will be better. So it’s taking that piece of information and doing what I can with it saying like, okay, maybe I’ll look at changing my diet and see how that helps me. But you know, I’m still having vertigo 24/7, there’s got to be something going on. What led me to my final diagnosis, I was seeing a functional neurologist here in Boston. She changed my life, like, absolutely understood from the very ground, beginning with what my symptoms were and what was going on with my body. We did a lot of vestibular therapy, which helped me so much, I was still having that constant vertigo. But you know, she was helping me alleviate my symptoms, so I could function as a person. I could, you know, go to work every day. I was trying to, you know, maintain my lifestyle, but also, like my world was off the entire time. One of my symptoms that actually led me to a doctor who changed my life was I had the symptom where my eyes would torque like this. And it was so scary to me. And it was one of the ones that I complained about the most, even more so than having vertigo. So I went to see, I actually posted a Facebook status. I think I was just looking for answers. And someone reached out to me and said, My mom is a vestibular specialist who works in the optometry field. And I went to this optometrist, she absolutely changed my life. She gave me glasses with prisms. I know, we talked about that in the previous discussion. And that actually alleviated my symptoms a little bit, but I kept going back to her because she had the answers. She kept referring or saying, you know, I think you might have perilymph fistula, you know, just looking at you and your symptoms are not getting better with these glasses. Like, I really want you to go see this doctor. And, you know, I’ll say it again, my journey was a weird one. I joined a Facebook support group called perilymph fistula support group, and talked to a bunch of patients there. I learned about a doctor who was in New Jersey, Dr. P. Ashley Wackym. I think he had spoken yesterday during one of the panels. And I emailed him on a whim and I said, I need some help. I think this is what’s wrong with me. I’ve seen multiple doctors, I just, I need your help. And he emailed back and said, When can you come? And at that point in my journey, I was on medical leave, I couldn’t work anymore. My world was turned upside down. It was horrible. I went to see him and we did the test. And then it took one doctor or two doctors, I guess in this case, to really understand me and believe me and see what was going on and confirm to me that I wasn’t crazy. And you know, the symptoms I wasn’t making up, like I looked perfectly fine. But I was miserable and had vertigo 24/7. And he had said, you know, can you do surgery next month. And I was in surgery the next month. And I recovered pretty quickly. And he absolutely changed my life. So yeah, it was definitely hard to navigate the healthcare system for sure. And just having seen so many doctors and trying to get that answer, but it does take those few doctors to finally understand you and believe you to really motivate you to find answers.
Laura Cala 1:19:04
That’s amazing. Now, let’s talk about your treatment. So how did your prescribed treatment for your traumatic brain injury differ from the recommended care for your vestibular symptoms? Can I pass that one across to you, Sarah?
Sarah Renberg 1:19:22
I mean, I think that I’ve never really looked at them as two separate things. It’s always been the brain injury that caused a sequela of issues. And then how you tackle those things is sort of always a balancing act. But I guess pun intended for where we’re talking today about sort of what all your different factors are. So from my brain injury, the main things that were sort of problematic were where I had a laundry list of ocular motor issues, double vision, convergence insufficiency, strabismus, nystagmus, like lots of that stuff. I had a neck injury and I was in a cervical collar. I tore a bunch of ligaments, it wasn’t just like cervical dysfunction, post injury. I went headfirst into a wall, it was not a good idea. Then, you know, I had autonomic dysfunction, which is basically everything your brain does automatically – blood pressure, heart rate, digestion, sleep, all that stuff, not functioning as it should. So I was like, presyncope, I freaked out a lot of therapists actually with very low blood pressure and high heart rate, things like that. So I had a lot of things to balance. But when it came back to what I was doing, a lot of the things all start the same, and so then they build off certain fundamentals. And so it’s like, first you have to, you know, get your neck in order, because that is like where you derive a lot of proprioceptive input. So your vestibular system is, yeah, it’s in the inner ear. And you know, that’s kind of like the otoliths and that’s what people think of when they hear it. But it’s also, you know, got nerves that run throughout your entire brain and get integrated with all your other sensory processing. And it has input through your neck. And that’s how you kind of know where your head is in space. And part of it’s like all in combination. And so you had to sort of chip away at each kind of in tandem without aggravating the other. And so that’s kind of how I view it. But a lot of it looked the same, it was a lot like looking at stuff on the wall, a lot of weird arm and hand movements. Exercise was integral, and then also sort of slowly finding ways to manage bits of return to life. And so figuring out what that meant in terms of re-exposing myself to rather disruptive environments, like school. I was trying to graduate high school at the time, and like the grocery store, and things like that. So, but you know, being in a grocery store aisle, you’re working on your eyes, and your coordination and your, you know, motor control and your vestibular system. And like, it’s not just one thing. And so I think if you take a holistic and integrated approach, then you’re able to have a more positive outcome. And so that’s sort of what we tried to do.
Laura Cala 1:22:38
That’s great. And for those that are watching, Cynthia’s sharing some really great articles in the chat about several things that the girls are discussing. So make sure you follow them and check those ones out as well. So Stefanie, can you tell us about your prescribed treatment and how it differed between your traumatic brain injury and your vestibular symptoms?
Stefanie Adams 1:23:00
Yeah, so for my first two concussions, you know, the treatment was pretty standard, you know, stay in your room, really heal and just avoid screens, I did that and I healed beautifully. But after my third concussion, you know that treatment was more, so let’s get you on an antidepressant to help. You know, with the migraines I was on nortriptyline, and my neurologist, because we had to assume that this was brain based, really wanted me to treat it that way and up my dose every few months to see how that would treat me. But of course, that didn’t end up working. And you know, the treatment now was surgery. So, you know, I went into surgery and I was on bed rest, I think for six weeks. And after that, it was just like Sarah said, exposing myself to the elements, really getting back in there. And one of the biggest things for me was that computer work would trigger my symptoms and that was my job. I was literally on the computer all day every day. So getting back to work wearing my prism lenses because I knew those helped me, and exposing myself to computers, and within I think like three months my work that I went back to after medical leave promoted me because I was doing so much better. Surgery was the treatment I needed. I just had to find the answer for my journey. So now I don’t get a lot of my symptoms. Some some days are good, some days are bad. But the main thing that my doctor and I talked about is just maintaining my sodium levels, because, as many probably know, a lot of you know your symptoms are made worse by salt intake. So I really do try to watch my diet and make sure that it’s not too heavy in salt so that I can maintain like good good days. But yeah, everything has been pretty great. So far. I mean, no complaints since surgery.
Laura Cala 1:25:12
Both of you have such incredible journeys. Now, I guess this question is going to be quite hard to sort of narrow down to one, but can you tell us what the most difficult chronic symptom was? And if there was one, or if there were several, I can only imagine that there were so many things that were difficult about both of your journeys. Can I pass that to you, Sarah?
Sarah Renberg 1:25:42
Sure. Um, I guess the ones that really persisted were a lot of like, visual disturbances and so not feeling like my eyes were staying still, just kind of feeling like my eyes were moving. And so the world was kind of moving but also at different paces. It never quite lined up, right, making reading really challenging or being in any sort of crowded environment, or like, lunchtime. Walking down high school hallways, if you picture the average high school, you’ve got lockers, and people, and a terrible, terrible environment. And then I guess, the fatigue. So once you work to regain a lot of the skills, the most frustrating element is that just like, you know, in building up strength in the gym. The first time you can bench 140 you might only be able to do it three times, you won’t be able to bang out 12. And so when I first developed or rehab skills, you know, taking them out into the world. You know, I was in a fatigue bubble. So like when I started college it was bumpy, because there were new exposures. And also, just this idea that even though things worked there, I don’t have the stamina that I did. And I took time to grow as well. I guess, the frustrating part is how these things relate to my ability to move well, and exercise because, you know, I’ve been an athlete my whole life, and that was just a big source of joy for me, and also a mental release. And so some of the ways I was able to get that back down the road are really important. But the time without a lot of meaningful movement was tough. But my return to movement looks like yoga. I got into rock climbing, which was phenomenal. And then doing things like that. So different from ice hockey, though. I still play for fun. Getting that back was huge. But without exercise the way I wanted to, I just didn’t feel fully like me.
Laura Cala 1:27:51
No, absolutely. How about yourself, Stefanie, what was the most difficult chronic symptom for you?
Stefanie Adams 1:27:56,
I had a few, but one of the worst was just having vertigo 24/7 feeling like the world was moving constantly. The hardest part for me was trying to be an adult and go to work every day. But, you know, when I was at the computer, I felt like my world was moving, I couldn’t concentrate on everything, anything. One of the symptoms that actually really led me to taking medical leave, was I would turn to go to the bathroom but I never felt like my eyes were following me. It would take a while for them to, you know, coordinate and walk with me. So I would be walking, but my eyes would still be over here. And I just felt like the walking to the bathroom was just so bad to the point where I actually fainted on multiple occasions because of how disoriented I was. I would go home, and my world would just never stop moving. I would try to sit and watch TV. And I think when I was at my worst, I wasn’t able to really leave my apartment for months. Just because of how bad my symptoms had gotten. The worst part of my day was probably going to bed because my world again would not stop moving. I’d close my eyes, but I’d still feel like I’m swaying and it’s a scary feeling. And when I had vertigo for the very first time, and it was so bad and so chronic, I think I attribute a lot of PTSD from getting those symptoms. If I even get a blip of vertigo today I’m brought back to that same place that I was at many years ago, just because of how absolutely debilitating and awful it can be. I wouldn’t wish it on my worst enemy. But yeah, vertigo 24/7 I think I had to be very, very still all the time. Going to bed at night I would sleep on a wedge pillow because I couldn’t risk turning in the middle of the night and having my world spin. I had great skin though, I will say, sleeping straight up. But yeah, I will say vertigo was definitely the worst, and my eyes doing that torquing thing. And it’s so funny, I went to my, I guess it’s not that funny. But I went to my surgeon, and I told him about this. And he was the first person to actually understand it. Because I had told so many doctors, like, my eyes do this weird thing where they go like this, and I can’t control it. And he was like, oh, you know, we have a lot of patients who do that. And that’s when I was like, Oh, my God, someone understands. This is the worst symptom for me because it’s so scary. Because you think your eyes are literally turning. But yeah, those two things. Definitely very scary. My eyes, and just the constant vertigo. It was not fun.
Laura Cala 1:30:51
Now, we’ve talked a lot about that this week in regards to that constant swaying and not being still. I know for myself, for my vestibular migraine, I can completely relate with you, Stefanie, that sometimes at the very beginning, going to bed was the worst thing because you just didn’t feel like you were laying in bed. That’s exactly right. And I think what you said is, it’s not funny now. But like, when you look back on it, it’s just like, trying to try to say it out loud. I know talking to friends and family, they’re like, what do you mean, exactly? I’d get to that point where I just would stop trying to explain myself to people that I really wasn’t sure were going to understand. And that sort of brings me into my next question in regards to caring for yourself mentally and emotionally. One thing I said before is I was given the diagnosis of generalized anxiety disorder. I knew I didn’t have generalized anxiety disorder. But I’m the first one to put up my hand and say I definitely had anxiety because of the symptoms. But it really wasn’t until I found the VeDA community, that and other vestibular warriors, where I was able to be like, Ah, this is normal. This is normal in our scope of things. So, Sarah, I’d love to hear how you care for yourself mentally and emotionally.
Sarah Renberg 1:32:33
Yeah, sure. And real quick before I get to that, just hearing you guys talk about some of the chronic things that reminds me of something that was normalized once I came to college was being super nauseous. Because there’s chronic alcoholism in college kids. Puking was something I was super scared of in high school, because no one wants to be the weird pukey kid, but then in college, I was like, oh, people think I had fun last night. Anyway, it’s like, laugh through some of the weird times. Anyway, that’s how I spun it a bit. In terms of managing some of the mental and emotional side, there’s a few different elements to my personal approach. The first is action oriented. And so I’m a pretty big fan and thinking critically about habits. Your habits distill into, you know, what you do in a day. And there’s a quote that I’m probably gonna butcher that’s basically like, every action is a vote for the person you wish to become. And the idea of a habit is that it’s supposed to be automatic, and you’re not supposed to have to think about it. And it’s supposed to be sort of set in stone. And that’s because when you’re going through all this, you’re thinking about a million other things. And so you want some important things to be easy, and you want your habits to reflect your values and what you’re going for. And so throughout this whole process, my top thing has always been health, and putting that up on a pedestal. And so I’ll think about how best to cultivate that, and really give myself the tools to do that and put myself forward in the best way possible. And so some of the ways that show up for me in my life are getting up and starting my day with a good breakfast and meditation. I also like to stretch and move. Before I would leave for school, you know, making sure that I have all those things lined up so that they worked like clockwork, and I would integrate them with, like, brushing my teeth, and that way, one existing habit would trigger the next. So that’s sort of the practical side of how you deal with all the things you have to do to distill it into a way where you can get it down. Then from the more mental emotional side and what’s going on internally, I think there are a few different things. The first is that I’ve been blessed by having a really awesome support network. And so allowing myself to lean on them even when it wasn’t out of necessity. There’s a difference between being so incapacitated that you have no choice but to have your mom do all your things for you. And then also, having to ask or like, let them do something for you. Whether or not that’s friends or family or an academic advisor, or whatever. Being okay with that, and searching to find points of meaning in your life at all stages. And so if you were to ask me, at the days when I wasn’t really getting out of bed and listening to Jim Dale reading Harry Potter, on audiobooks incessantly on an endless loop. You know, I still had avenues that gave me purpose, such as an art program in high school, that was pretty much like the only thing I would, like, do some drawing and stuff. I would talk to friends. There’s still things that I found fundamental to my being. And I think that’s important at every stage that you are. And it can be really small or really big and thinking about things like, I don’t know, there are not too many kids on this campus who are speaking at professional conferences today. But I’m doing that. And it’s, you know, because of what happened. So being able to find some stock in that, and I’m not saying everything happens for a reason. I’m not saying that, like everything’s a blessing or whatever. Ithink most of that is bullshit. But it’s like being a realist and understanding that what has happened has happened. And you can either mope about it all the time, or you can go for 110%. And so that’s kind of how I like to set time. Alright, I’m going to be sad for the next 10 minutes. And I’m gonna set a timer. And after those 10 minutes, I’m gonna get up and I’m gonna go do something that is fulfilling to me. And so being able to come to terms with that and vocalize it I think is a big step and, and you learn and grow with it. I did not have it all together back then. But I think now and learning with every turn, you end up becoming more able to handle all of life’s stresses, you know. We’re both young and we’ve encountered a decent amount of stuff, and I definitely feel more prepared to handle the rest of my life because of what I went through.
Laura Cala 1:37:20
I think that would resonate with a lot of people. And it certainly resonates with me. I guess it’s that notion of, you know, for me right now, it’s what 2:40 In the morning, and people would think, Oh, my goodness, that is so crazy with having vestibular symptoms of vestibular migraine and vestibular dysfunction. But to me, it’s like, I could crawl in a space and be sad all the time and say, Why me? But for me, it’s sort of like you said, it’s that no nonsense, it’s being organized. And for me, it’s always been, I know what I can do, and I know what I can’t do. And I need to have a plan. And if I have a plan, I can take action. But on the other side of the scope is I could always turn around and say, Well, I’m just not capable of doing that. And my vestibular is going to win. And I’m not going to put myself out there and do different things. So it is really sort of motivating. And it’s inspiring that you say those things, because for a lot of young people, and you know, we have heard from a fair few young people this week, it can be absolutely mentally and emotionally draining. But I think the common theme that has come out this week is to keep going and to trust that you’re on the right journey, whether or not it’s happened the way it’s meant to. But you’ve gotten on with life and you haven’t let it take over. So that’s long winded or not long winded. That was a beautiful answer. Thank you for sharing.
Sarah Renberg 1:38:53
I would just quickly like to add on, I I think also it’s like, you’re given the opportunity to work out of something. Like if you view it only as something happening to you, you lose your autonomy and sense of being and so I think by being given the tools, like if you go to vestibular therapy, they can do what they want with you for 45 minutes while you’re there, but the change happens at home it’s in doing the work outside and so like a lot of many elements of recovery is in your in your control. And so it’s being able to recognize yourself in the mirror and be like, are you going to work as hard as you can at this? And then building up goals and the support network that you need to achieve it.
Laura Cala 1:39:42
Stefanie, we’d love to hear how you care for yourself mentally and emotionally.
Stefanie Adams 1:39:48
So, just going off what Sarah said. A lot of what she had said is how, you know, to keep myself sane. I am someone who believes that everything happens for a reason, but I’d be lying if I told you that I wasn’t absolutely miserable. It was so hard for me to function on a day to day basis, getting up was the hardest part of my day going to sleep was even harder. It was scary. And the hard thing for me during that time was asking for that help. Reaching out to people and letting them know. I had a great support system. My boyfriend, and I apologize if I cry, he is amazing. He’s been with me since the start of my journey to now. And if I didn’t have him, I don’t know what I would have done. He took me to my doctor’s appointments. He was there when I was not functional, like the mannequin in the room who couldn’t move. And I just, you know, I recommend to other people, reach out for help, get that help from other people. It’s so hard to do this on your own, I wouldn’t wish that upon anyone. I was someone who was very independent and could not believe that this was happening to me. I am someone who’s just totally like, since birth, like doing things for myself, doing things on my own, just wanting to accomplish the world by myself. And it took a lot for me to even reach out to my boyfriend and say, I’m struggling, I need your help. And if I didn’t have him, I don’t know what I would have done. So just having that support system and talking to him openly about it. And not just fighting my own battles myself was something that helped me during that time. And having friends that, you know, keep me entertained and talk to me about things outside of what was going on with myself. Because, you know, I didn’t like to share a lot. But I did like to talk to people just about, you know, like housewives, like we love on housewives (the TV show). That’s something that really kept me sane during that time. But, you know, having gone through it, and I think the moment that it changed for me after having surgery, and we talked about the sleep thing being such an issue, like that was so scary for me going to sleep at night. And the moment I realized that I was getting better was being able to flip on my side. And not because it was so small, but something that I had wanted to do like just sleeping on my side by myself and not seeing spinning totally changed my perspective on everything. When I was able to start working and not come back and be exhausted. I’d realized this happened for a reason. There’s a reason why I had gone through this because I’m such a stronger person coming out of this. And you know, like Sarah said, I chose to take what had happened to me instead of moping. And going back and thinking about how awful that was for me. I chose to use it and actually reached out to VeDA and was like, how can I help? What can I do for other patients that can help them just get through the day to day. I still talk to patients almost every day, just telling them about my journey, you know, recommending them to doctors that I had been to. Some patients who are in Boston with me too. I’m like, you know, see this doctor, see this functional neurologist, she’s amazing. That really gets me, you know, because it’s like, I don’t want to walk away from something as traumatic as what happened to me and forget about it. That’s not what I want to do. I want to take it and become a better person because of it. And like Sarah said, it’s so traumatic that we have gone through a million lives having gone through it. And anything that comes to me nowadays doesn’t feel as big to me having gone through all of that. This past year, I actually had COVID and I was really, really sick, to the point where I was in the hospital. And you know, another thing I will say is therapy therapy, beautiful. It’s amazing. But something I said to my therapist was, I would do what happened to me with COVID over again more so than what happened to me having vertigo and going through that whole experience because it was so mentally and physically tasking and a really hard time for me. But what keeps me going today is just reminding myself I went through this traumatic experience, I am on the other side of it, thriving at work, being able to log into my computer each day and actually do amazing work for other patients too. I love talking to other patients on the side, giving them hope, that really keeps me going. But on the day to day thing, I love fully engrossing myself in my work. It’s something that was taken away from me during my time that I was really sick that I can now fully engross myself in, which gives me a lot of purpose. So I love that love the support system that I’ve created from this event. And I have such good people in my life that really do keep me sane. So yeah, I mean, I take care of myself really well. Having had COVID I’ve totally switched my diet game. I only eat whole foods. You can’t put a chicken finger in front of me because I won’t eat it anymore. But yeah, those are the things that keep me going going outside for walks, something that was taken away from me, the really little things that would seem so minor to someone get me going, like flipping on my side, being able to sleep normally, and not having my world spin are really little things that I take as gratitude during the day.
Laura Cala 1:45:58
So many things you have said just resonate with me. I remember last year, I actually had a bacteria in my tummy. And I ended up having to go to hospital. And I went through the beginning onset of fibromyalgia. And I was in a lot of pain. But I remember sitting in the hospital, and my partner being there with me. And I was describing it to this doctor who did not believe me. They expected me to be in more pain. And I said, Well, my pain tolerance is really high and this is nothing compared to my vestibular migraine. I am in pain, I just want this fixed, so let’s get on with it. And that’s why I think our community and the people that are in our community have got strength like I have never seen. This whole week, the people that have come on the panel, the people that are sharing in the chat, VeDA has brought us all together. And I think that it’s something that’s absolutely incredible. If Alicia the Dizzy Cook never replied back to my message my journey would have been completely different. And that’s why I’m so passionate about helping others. Because I just don’t want anyone to have to go through it alone and not know what’s going on. And that’s what I mean is I think people that might be watching this might think, how am I going to get through this? Like, you know, that simple turn, that simple turn on your side is huge. And the gratitude you now have in anything you do in life is huge. A lot of people this week have talked about that self love. And it is that love for ourselves and how much we’re actually capable of doing. It’s just absolutely incredible.
Stefanie Adams 1:48:11
I’m someone who didn’t have that self love. And I look at my body so much differently. Now it doesn’t matter what it looks like, this body got me through what I had gone through, got me through COVID. It got me through constant vertigo, like, it is truly amazing. And it’s given me that self worth and purpose. Just moving forward in my life is incredible. And something that’s not talked about enough is how absolutely debilitating these vestibular symptoms can be. You look fine, but inside is like an absolute whirlwind of misery. I don’t know how to describe it. But I used to say to doctors, if you haven’t had vertigo, you don’t know what it’s like, you can’t sit here and tell me that I have anxiety because I am spinning and like nothing is straight. I can’t even look at myself in the mirror straight. And I just want patients to know that there is support out there for you. I know it’s hard to go internally with your family members and friends who really don’t understand. But that’s where I found the most support is going through VeDA talking to other patients, seeing people who actually understood what I was going through, that really gave me validation, which is what I needed that I didn’t have. My boyfriend and friends validate that the symptoms I’m going through are, you know, experienced by others and they have the same kind of journey that I’ve been through. So yeah, VeDA has changed my life for sure.
Laura Cala 1:49:47
Absolutely. And I think it was actually yesterday at our evening fundraiser where Cynthia compared that notion of our symptoms and what that’s like for someone going through chemotherapy. I’m sure I butchered that statement up, Cynthia, and I apologize. But it’s incredible because we feel like our whole world is upside down. And we feel we’re in absolute turmoil. And I don’t think we actually recognize how strong we are when we get through it. What that journey has brought into our lives. I’d love to know if you both still get your symptoms and how you now deal with it. Now that you’re on the other side, and when I say the other side, that new normal that we keep referring to. Sarah, can you share on that one?
Sarah Renberg 1:50:41
The main thing that I really still deal with is related to the autonomic nervous system dysfunction. So that is probably going to be with me for a long while. But the most, I’d say 99.99% of vestibular issues are gone. And I guess if there is anything I’m aware of more so it’s when I’m in a lecture hall, I’m taking notes and I’m aware that there’s a crowded room, I have a peripheral vision sensitivity. And again, a slightly more increased fatigue ability and less stamina, but I don’t get nauseous anymore. I stopped carrying a barf bag around in 2018. That was a big deal, by the way, to get rid of the barf bag. And you know, I’m back to exercising and if anything derails me now it’s related to the autonomics which can create some changes in cerebral blood flow that can present in a vestibular fashion, but it’s not because the vestibular system doesn’t work well. And so I know that now and I’m still working to overcome the rest of it. I got my driver’s license last May, which was a big deal, finally age of 23. I rented a really cool bright red Toyota Corolla, a tiny four door, but it was bright red, and it was a little obnoxious, but I kind of loved it. So that was a big moment for me. I don’t really have too much of the vestibular stuff. Occasionally in the dark, I’ll notice I’m not steady and I battle for one minute, but there’s nothing that really interferes with my life. And in Michigan last week, it was like nine degrees all week, and I was playing out on the pond and having a good time with my friends. So anyway, hope that’s a happy ending story for y’all.
Laura Cala 1:52:43
How about yourself, Stefanie? What’s it like for you now?
Stefanie Adams 1:52:48
So life is pretty great. Now, I don’t really struggle with a lot of vestibular symptoms. There’s a lot of brain fog and fatigue that still lingers just from having COVID. If I’m having a symptom day where I feel unsteady, I have like a little bit of a headache. I always look back and think, there’s a reason why my body is the way it is right now because I’m on a strict whole foods diet. I don’t really eat processed foods anymore. I try to take food out that triggers migraines, like avocados, beans, I can’t even look at a bean without getting a migraine. I know if I have a headache day, it’s like, of Stef, you had chocolate yesterday, that’s probably why you have a headache. So I justify why I have these symptoms, instead of assuming the worst. And just thinking like oh my god, like did my ear, pop bla, bla bla. And stuff like that really keeps me going and just makes sure I know that I’m okay in the end. And I’m not actually, you know, going back on all these symptoms, actually helps my mental state if I do get symptoms throughout the day. One of the things I do have to do, which is having had surgery on my ear and having a perilymph fistula, I do wear earplugs when I go out and go into bars just because the sound can kind of trigger it. And you know, preventing my symptoms that way really helps. A goal I set for myself this year is getting back on a flight. So I’m hopeful that I’m able to do that and not have symptoms that come with it. That’s one of the biggest triggers that happened for me and made my symptoms worse years ago before I had surgery. So I’m just hopeful that my symptoms have been kept at bay for so long because of how concrete my surgery really was to be able to achieve these kinds of things. And another thing is, I’m not supposed to be lifting more than 10 pounds because of my ear and having pressure go through my head. So if I’m having a bad symptom day where I notice that my ears are a little pulsating, I will just keep it steady, keep it chill for that day. And not really do much. But with that comes also tinnitus, I do have that, which doesn’t really bother me. At the end of the day, I always say, it’s not vertigo. So I’ll take this over vertigo any day. And that’s the only underlying thing that really comes. And I think that’s because, like I said previously, if I’m not careful with my salt intake, it’s worse. If I eat cheese, and I love cheese, so much. That really triggers me because I don’t eat it that much. And when I want it that triggers my symptoms. So I will say my symptoms are really diet based. So I just tried to be really careful. And I feel 95% Better.
Laura Cala 1:55:55
That’s amazing. Now I can relate, cheese and chocolate, my two worst things love and hate, because I know exactly what’s gonna happen.
Stefanie Adams 1:56:04
Yeah, I’ll wake up like, Why do I have a headache? It’s like, girl, you know exactly why you have a headache.
Laura Cala 1:56:11
Ladies talking to you, it’s been so great. And I’m sure everyone has gotten so much from it. Just to close on one last question for each of you. Having gone through your amazing journeys, both of you and sort of still being on them. What advice do you wish you had given yourself at the beginning and what advice would you give someone now that’s at the beginning of their journey, I know we’ve talked a lot about advocating for ourselves and being kind to ourselves. What do you think is the key message to someone out there at the moment that’s at the beginning of their journey? Sarah, can I pass that to you?
Sarah Renberg 1:56:45
It’s not the first time I’ve been asked this question. And I feel like I come up with a different answer every time. So the first thing that springs to mind is pretty self explanatory. And that’s that rest is okay. Think I went from going a million miles an hour to stopping and even now I like to get a good quality sleep, or I’m not as great the next day. And I think, you know, that’s not the typical college student life from a work or fun perspective. But knowing what is important for balancing and that the people that will be important to have in your life will understand and, and accommodate that and be there for you anyway. And so that’s one, and then the second is to not settle. So if I had taken the first prognosis from the doctor, then I probably would have stopped trying to get better a long time ago. And I think that, you know, you should trust your gut. I think I’ve been aided,in large part by the fact that I got curious and asked a lot of questions and now with my education, you know, I can ask a lot better questions. And so I think, do not be afraid to speak up and ask until you feel like you’ve given it your all and I think you know that that goes for any element of life. And because it’s like, if you’re the type of person to run through the tape, like, literally on the sports field, then why are you not doing it figuratively, here. And so I think those are some things, but rest is key and then not feel guilty over it. And letting people in, I think people will surprise you. So those are a few. But yeah, I didn’t really do any of this perfectly at the start. I was a bit of an asshole.
Laura Cala 1:58:53
I think we’ve all been there. Fortunately for me, you know, I was a little bit older when all of this happened. But being a young person and trying to navigate through those feelings of guilt and doing what you know everyone else is doing and not putting yourself backwards must have been incredibly difficult. Absolutely admirable. Stefanie, how about you?
Stefanie Adams 1:59:22
To add from what Sarah said, I totally agree. I think the biggest thing for me was just to continue advocating for myself. I actually work with patients with rare diseases at my marketing job. And one of the things we constantly try to get out there is, continue to advocate for yourself like Sarah said, do not take the first answer as okay. This doctor told me I have vestibular migraine. That must be it. If I had gone with that it would have never led me to my diagnosis, my proper diagnosis and getting surgery and actually having that life changing event for me. Continue to advocate, go to doctors prepared. Tell them what it is. It might be this, it might be this, and make sure that they’re looking into getting you an MRI or anything like that. Continue to advocate for yourself and let it be known that you’re not okay. I’m telling you this, it’s not anxiety, you’ve been telling me it’s anxiety for however many months, I’m telling you, it’s not this. Can we please just continue to work together and try to find an answer? Because I went to many doctors who had told me it’s anxiety. I actually went to a doctor and I told him I’m going to see a doctor about perilymph fistula, and he laughed at my face and said, Good luck with that. That event shook me to my core, I was in tears. But I didn’t stop there. And I could have, and I could have just given up and just said, well, you know, the doctor doesn’t believe it. And he’s one of the best. What should I do? But I didn’t stop there. And I think that’s key, it’s just continued to be that support for yourself. And I think being a young person, when all this happened, I was the life of the party in college, I went from the life of the party, to not even being able to get out of my bed. And just not feeling sorry for yourself. It’s so easy to just mope around and be like, you know, life sucks. Like, this really is awful, and you know what it is, but you need to be there for yourself and continue to be there for yourself and do what makes you happy, given your it’s hard to get that elsewhere. I encourage you to get it elsewhere, but also give it to yourself. Because it’s so easy to just beat yourself up and say, you know, I’m not able to do this. I used to ruminate on my old self all the time, my college self, and how fun she was. But I ended up liking the version of myself who came out of this traumatic event a lot better than her because I’m a lot more stable than that girl, let me tell you. And another thing. Just learning to say no, and being okay with saying no. A lot of the times I found myself being worse, saying yes, and then having to cancel later on because I wasn’t feeling well. And not feeling bad about saying no, like, sorry, I can’t go. That’s what I do nowadays. Even though I feel great. I’m just like, listen, I can’t, I’m not going, sorry. And not feeling bad about it. So easy. Easier said than done. But that’s something that I wish I could have told myself. I think a lot of it had to do with saying yes because I wanted to feel better. And I wanted to go and be there. But I knew in the back of my head that I wouldn’t be able to. I think those are just a few pieces of advice.
Laura Cala 2:02:47
That is absolutely beautiful. Now, if you’re watching and you’ve missed any of today’s session, or if you want to go back and watch some of the others, I’d highly encourage you to do so. Because each day has just been absolutely fantastic. Cynthia has put a link in the chat where you can purchase the recordings and the transcripts. Thank you again for joining us for Life Rebalanced Live brought to you by the Vestibular Disorders Association. If you’d like to support programming like this, please visit VeDA’s website and make a donation. Thank you so much, everyone, and thank you to VeDA – we just wouldn’t be here without you. Thanks everyone and have a great day