Hydrocephalus with Dr. Jamie Wright

On this episode of The Neurotransmitters, host Dr. Michael Kentris interviews Dr. Jamie Wright about hydrocephalus, a condition that affects the brain. Dr. Wright shares her personal story of being born with the condition and her journey to becoming a doctor. 

They discuss the two main treatment options for hydrocephalus, the shunt and endoscopic third ventriculostomy procedures. Dr. Wright also advocates for patients to have a neurologist on their healthcare team. The conversation shifts to the mental and physical toll of medical training on residents, particularly those with disabilities and chronic illnesses, and the challenges they face in receiving accommodations. Dr. Wright shares her own recent medical leave due to ongoing shunt issues. 

This episode sheds light on a little-known condition and the importance of accommodating and supporting residents with disabilities.


Find Dr. Jamie Wright here!

https://www.instagram.com/shuntedmdphd/
https://twitter.com/shuntedmdphd
@shuntedmdphd

The Hydrocephalus Association
https://www.hydroassoc.org/

The Neurotransmitters is starting live case based discussions beginning in June 2024.!

If you or someone you know is interested in either presenting a case or being part of the discussion group send an email to contact@theneurotransmitters.com with the subject line “Case based discussion.”

Looking forward to hearing from you!

• Check out our website at www.theneurotransmitters.com to sign up for emails, classes, and quizzes!
• Would you like to be a guest or suggest a topic? Email us at contact@theneurotransmitters.com
• Follow our podcast channel for The Neurotransmitters @neuro_podcast for future news!
• Find me on Twitter @DrKentris (https://twitter.com/DrKentris)

The views expressed do not necessarily represent those of any associated organizations. The information in this podcast is for educational and informational purposes only and does not represent specific medical/health advice. Please consult with an appropriate health care professional for any medical/health advice.

Transcript

Dr. Michael Kentris [00:00:01]:

Hello and welcome back to the Neurotransmitters Podcast, a show about everything related to clinical neurology. I am your host, Dr. Michael Kentris, and I'm very fortunate today to have another special guest, dr. Jamie Wright. Thank you so much for joining me today.

Dr. Jamie Wright [00:00:18]:

Thank you for having me.

Dr. Michael Kentris [00:00:20]:

Now, I'm extra excited to have you on the show because I've been meeting a lot of people on Twitter in the medical Twitter space, you being one of them. You have some excellent posts up there for people who are curious, but you have a very unique perspective. So you're a neurologist in training, you're an MDPH. D. Tell me a little bit about yourself and kind of what led you into the field of neurology.

Dr. Jamie Wright [00:00:45]:

Yeah, so I kind of say that I've almost born into it, or at least I joke that I was born into it. So I was born six weeks premature, which may or may not have had anything to do with me developing congenital hydrocephalus. And I was diagnosed at four months old. Didn't have my first shunt place until I was 20 months old. That's a whole other story. But growing up, I had a few revisions here and there. I was always very studious and I remember even in elementary school, my teachers joking that I'd be a neurosurgeon one day. And I was like, it wasn't even on my radar, even though I saw a neurosurgeon every year. And then I didn't really give much thought to having hydrocephalus until I had a shower vision when I was six months or six six years old. And it just kind of was what it was and kept going. And then I had two shunt revisions two and a half years apart in high school. And it was that second one, it was my junior year of high school, where it really kind of sunk in that I was going to have to deal with this for the rest of my life. And the key kind of moment for me was it was a month before AP exams. And as I said, I was very studious little nerdy. And I was talking to my neurosurgeon because thankfully, it was like, kind of a mild enough mild enough malfunction that we were able to kind of plan it out. And I was trying to get her to postpone it until after AP exams. And she told me she's like, well, if you don't do this, it's going to get worse and worse, and then you're going to go into a coma and die. And I was just like, wow, yeah, this is like the 17 year old me. And during that same conversation, my mom was like, but she just had a shot revision like two and a half years ago and kind of other truth bomb like neurosurgeon was like, yeah, 50% of shunts have to be revised within two years of surgery and of being placed. And those were kind of two things that I never really thought about and hadn't really sunk in. So I had the surgery. I did fine on AP exam. Yeah, I did great. Graduated valedictorian, went on to undergrad, and I really wasn't planning on going into medicine. I majored in molecular biology, but I'd met some doctors that I had bad enough experiences with that I was kind of like, I don't know what they do to doctors during med school, but I don't want it to happen to me.

Dr. Michael Kentris [00:03:54]:

Yeah, that is an entire conversation right there.

Dr. Jamie Wright [00:03:58]:

Yes, because I had all these great med school, like, premed friends, because I was in molecular biology. I was in the biology. So all my friends were premed, and they were all like, jamie, why aren't you becoming a doctor? You have the perfect experience for it. And it wasn't until the end of my junior year of college, I was working in a lab doing research. I'd gone a fellowship to do research full time and working with this amazing pediatric intensivist. And he worked with a lot of other pediatric intensivists and meeting all of them and just seeing how much they cared and how passionate they were about the work and how great their attitude was. And I was like, you know what? I do want to become a doctor, but I also want to do research. And so that's when I decided to go the MDPhD route. So I was kind of late to the game from that perspective.

Dr. Michael Kentris [00:05:09]:

Now, what has been the area of your research?

Dr. Jamie Wright [00:05:12]:

Well, so that research was actually I was studying perinatal white matter injury in a mouse model. So that was kind of more in line with kind of where my future goals are. Then for my PhD. I did my PhD work in a medical genetics lab studying kind of some rare gene mutations that lead to cerebral, vascular, and cardiovascular disease. So a little bit farther away, but it was with an amazing mentor and really excellent training. And that's what you really want to go for, for a PhD. Unfortunately, I wasn't able to find a lab that was, like, right in the niche that I was looking for future wide as far as my future research, because surprise, surprise, I want to do research on hydrocephalus and something more focused in that direction.

Dr. Michael Kentris [00:06:09]:

Let's take it back to like, a 10,000 foot view. I know most of the people who listen are in the medical field in some capacity or another, but for those who might not be familiar with hydrocephalus in broad strokes, how would you describe to someone who wasn't familiar?

Dr. Jamie Wright [00:06:23]:

So how I describe it to people is kind of I think the late person definition is that when we all have fluid in and around our brain and it's there to cushion and provide nutrients and stuff, so it has a purpose. But in hydrocephalus, that fluid for some reason accumulates abnormally, so it builds up either because it's not being absorbed back into the system correctly or it gets blocked somewhere in its circulation, but it builds up, putting pressure on the brain. And that can lead to, of course, well, leads to a lot of symptoms for the patient, but it also can lead to brain injury. And as my neurosurgeon put it so bluntly, death if left untreated.

Dr. Michael Kentris [00:07:17]:

And correct me if I'm wrong, CSF dynamics or cerebral spinal fluid dynamics. It's kind of a hot area that's building up a little bit in terms of interest in the at least I've been noticing the last few years. Yeah. And like like so many things in neurology at large, it seems a lot of the difficulty in its research is that there's so many different mechanisms that can lead to the same kind of problem. So clinically, it's hard to differentiate the underlying cause. So, for instance, like in your case, you mentioned congenital hydrocephalus. So I know a lot of times, like, quote, unquote idiopathic, which I always explain to my patients, is like, it's doctors speak for we're not sure why it happened exactly. Is that an accurate characterization of most congenital hydrocephalus?

Dr. Jamie Wright [00:08:04]:

I think in large part, yes. One main or common cause of congenital hydrocephalus is aqueductal stenosis. So kind of as to explain what that means. In the CSF circulation, there's ventricles. There's the lateral ventricles, which are the largest on either side of neither hemisphere of the brain, kind of up towards the top, and those drain down into the third ventricle. And then that fluid drains down into the fourth ventricle. And between the third and fourth ventricle is this narrowing called the aqueduct. And that narrowing can get easily. It either doesn't develop properly so that it's either too narrow or blocked, or it can become blocked by scarring, bleeding, all kinds of things, tumors, that sort of thing.

Dr. Michael Kentris [00:09:02]:

When I was a baby neurology resident myself, they kind of teach us communicating versus non communicating or let us say, Obstructive versus non Obstructive hydrocephalus, but it may not be quite that straightforward and simple. Is that something that's been on your radar as well?

Dr. Jamie Wright [00:09:19]:

I mean, it's been on my radar from the fact that my mom has one idea of what type of hydrocephalus, of non Obstructive versus Obstructive that I have. And looking back in my old records as a baby, I was like, I don't know what type of hydrocephalus I have. And then now my doctors, because originally they thought I had non Obstructive hydrocephalus or non communicating hydrocephalus, communicating hydrocephalus, which meant it was non Obstructive. And then now my doctors think, oh, no, maybe it's obstructive hydrocephalus. So I don't know much from the research sphere as far as may not.

Dr. Michael Kentris [00:10:04]:

So it may not be as black and white in every person's case

Dr. Jamie Wright [00:10:08]:

Yeah, it's not as black and white, and especially if you don't have those original images. And I know in the hydrocephalus community, like the patient community, some people kind of know what theirs is and kind of make own it more than others. And then as far as in the medical community, I feel like we are kind of leaning away from putting as much weight on that, except for when it comes to treatment options, that's where it really comes into play. But even now they're thinking maybe it's not as black and white as we thought it was. Right?

Dr. Michael Kentris [00:10:47]:

You've mentioned these shunts several times, but could you enlighten us a little bit?

Dr. Jamie Wright [00:10:53]:

Yeah. The only treatment options for hydrocephalus are some sort of neurosurgery or brain surgery. There's two main ones. The kind of oldest is well, this is Arguable, when you know the history of hydrocephalus, but the most commonly used is a shunt. And what a shunt does is it's essentially a tube, like a long tube that they put into the ventricles, attach it to some sort of valve, and then run a tube down either into the abdomen or the heart or to face around the lungs to drain the fluid. So it's just a big drain, essentially. It's like the easiest way to look at it. The other option that actually goes back pretty far in history but has kind of been more refined and perfected in recent years is something called an endoscopic third ventriculostomy or an ETV, which is where they take now an endoscope or a camera and down through just a small hole in the skull into those lateral ventricles. So those large ventricles, and they actually go through the lateral ventricles down into the third ventricle. So that next ventricle down and they make a new opening for the CSF to go through. And that's where this whole debate of communicating versus non communicating or obstructive versus non obstructive can be important when determining who is a good candidate for an ETV. Because an ETV is preferred, is the preferred treatment modality more and more because you avoid a shunt and all the complications that come with a shun, because I mentioned the 50% failure rate, at least in the pediatric population, it has the highest, I think the highest failure rate of any implanted medical device currently. And then there's also an infection rate, and the infections are a big deal with shunts. And so you avoid all of that if the patient, if any TV works for them.

Dr. Michael Kentris [00:12:26]:

So you've mentioned you've had to have these revisions multiple times throughout your lifetime. Now, is it usually during your annual checkup with your neurosurgeon? They're like, oh, we need to revise this, or is it like, I'm having symptoms that prompt a reevaluation a little more urgently?

Dr. Jamie Wright [00:12:37]:

I haven't gotten to an annual checkup in a long time. I thought I was doing pretty well because I went almost ten years between revisions, and I was actually in my first year of graduate school. So for my Mdphg program, I did three years in medical school and then went into graduate school and then after graduate school did my fourth year of medical school. And it was during my first year of grad school that during this time, I've always had headaches. For as long as I can remember, I've had headaches more than most people. But during college, they started getting worse. And I would go to my neurosurgeon, and you'd look at my imaging and tell me it's fine. And so then I went to a neurologist, and I started being treated for migraines. And I tried literally dozens of migraine medications, and nothing was working. And I moved from medical school, and actually, the head of pediatric neurosurgery took over my care while I was in medical school. And he started talking about this phenomenon of some people with hydrocephalus, their ventricles stop enlarging. It's called ventricular non compliance. Some people call it slave ventricle syndrome. But that's a whole nother story. That's a whole other talk as to why that's not an accurate description. But we started talking about that, and my headache kept getting worse and worse. And then finally I got to a point where I couldn't sleep through the night because I'd be woken up by headache and imaging completely stable. And finally I went to my neurologist because I was like, this is my red flag symptom. This is the symptom I always have when my shunts failing. And that's usually how it was when I was growing up, is I would start having headaches that woke me up in the middle of the night, and they'd get worse and worse and worse. Finally, my neurologist was like, I know your imaging stable, but this is increased intracranial pressure. This is ICP. And so she called my neurosurgeon, my neurosurgeon, and I made the decision for me to have exploratory surgery. So exploratory brain surgery. Cool. And he got in there, and my entire shot was malfunctioning. Like, he had to replace the whole thing. And we have no idea how long it was malfunctioning. He said it could have been malfunctioning for years as your headaches got worse. So I've had those types of malfunctions. And then after that surgery and after we knew that my ventricle is no longer enlarged. So that was in 2015, and I've had 14 more neurosurgeries since then just in that time span. And one of them was kind of the scariest shell malfunction I've ever had in my life. And I was literally just fine. I remember brushing my teeth that morning and thinking, I cannot wait until my follow up with my neurosurgeon and my neurologist to tell them how awesome I'm doing, because I'd had six other surgeries that year. And so I was like, we finally got it. We finally figured it out. And I went into lab, and I was sitting at my desk, and all of a sudden, it felt like it literally felt like a bolt of lightning or a bolt of pain just went through the top of my head down my spine and it was just this. And I don't want to use the term thunderclub headache because I don't want to lean all of a medical medical in that direction, but it was just this sudden onset worst headache of my life. And I started to stand up because I was alone in the room and my vision started blacking out. I felt like I was going to pass out and I was like, oh, my gosh, I don't want to pass out here by myself. And so I was freaking out what to do, and I finally sat down. I sat back down in my chair because I was like, I'm not going to make it to the door to get out to the hallway. And as my vision is blacking out, I'm trying to text them to let them know that something's wrong. And thankfully, when my ICP got pigs, that's what it turned out to be. Like, my shot had locked in that instant and my pressure rose. And thankfully for me, I get what they call plateau waves. The pressure goes up, but then it comes down for a little bit. And so and this gets into, like, a lot of ICP dynamics. It's kind of down rabbit hole, but essentially I was actually able to, like the pain wave passed. I was able to get up, walk, go tell somebody what was going on, like what had happened. And I'm like, okay, I'm going to wait about a little bit and see if it happens again. My personality. And so I actually went to lab eating, and I kept having these plateau waves, but I'd be fine in between. So I was able to function in between, but they were getting worse and they were getting closer together. And so finally I called my neurosurgeon and he's like, Go to the Er. So I went to the Er and I actually was still really reluctant to I still wasn't sure whether or not it was a shot malfunction, even though now looking back was obvious. But because during these waves, my vision would black out, I would be like, shaking uncontrollably horrendous pain. I started vomiting. I mean, it was like, clearly something was off, but they, you know, admitted me to the ICU for the night. And then it was finally like, a friend of my mom and my mom ganged up on me over the phone and were like, they called my neurosurgeon at, like, 04:00 in the morning and were like, you have to revise her shunt. And sure enough, the catheter going into my abdomen was blocked, but was completely blocked. So that was kind of that's the other extreme of how shunt malfunctions can happen. During that time, I also had an endoscopic surgery ventriculostomy. So I also have cool video of the inside of my brain. Unfortunately, it didn't work at all for me, but I got cool videos, which you can see on my twitter. But, yeah, it's been a lot of issues with trying new valves because of over drainage, and then I have under drainage, so we had to switch out the valves and then shun malfunctions mixed in. Last year during my intern year of residency, I had my shunt externalized, and kind of one of the most interesting things about is we clamped it off, and within an hour and a half, my ICP reached 100, which, for those of you who don't know, a normal intracranial pressure ICP is like, five to 15. And so it's been quite a process.

Dr. Michael Kentris [00:17:13]:

So I know you said most shunts have a 50% failure rate within two years, but it seems like yours have been a little more frequent than that.

Dr. Jamie Wright [00:17:19]:

Yeah, and, I mean, this is where you get into it's averages. Some people I know people who've gone 10, 20, 30 years, the same shunt. I know people who have a shunt revision every year or have I know people who've had shunt fail have had shunts fail in the pack. You after surgery. So it's just very unpredictable.

Dr. Michael Kentris [00:17:35]:

Now with your history. I mean, I, for one, think it's very obvious why you would choose to go into something related to neuroscience, but what was it specifically your history of hydrocephalus as a child and through the remainder of your life that led you into neurology or some other path that led down that road.

Dr. Jamie Wright [00:17:48]:

So what it really came down to was, especially during medical school because I made the decision to share my story on social media. I started sharing my experiences as a medical student dealing with hydrocephalus and chronic illness. And I had so many young adults reach out to me who were in that kind of in between period between their pediatric care transitioning to adult care. And so many young adults kind of fall off the map, or it's more like pushed off the map because and, I mean, I had this unfortunate experience. Like, my pediatric neurosurgeons were wonderful, but when I turned 17 and my neurosurgeon of 17 years retired, they were like, why don't you go ahead and find an adult neurosurgeon? And that was it. They didn't tell me who they didn't have any recommendations. They didn't have a process. There was no connections. There was no, like, let's help you transfer your records. At least there's none of that. There was no process. And there was a time where I had, like 20 something year olds or teenager or people in that kind of transition period who were like I was hearing from somebody, like once a week who was messaging me, saying, I can't find a neurosurgeon or a doctor to take my care to help me, to take care of my shunt to take care of my hydrocephalus or manage it. And I met this amazing neurosurgeon here at the University of Washington or here, where I'm training now who is a neurologist who specializes in, particularly patients with congenital hydrocephalus who are transitioning from pediatric to adult care. And he's made a niche of taking in those patients and managing their hydrocephalus, managing their shunts. And he works with some amazing neurosurgeons here who he has this great expertise in CSS circulation and ICP monitoring and shunts. So he takes care of these patients and he manages them, and he does any monitoring or anything or testing that needs to be done. And if he determines that something's wrong with their shunts, then he passes it off to the neurosurgeons. But he's made this great practice of being able to care for these patients, and that's where that's what I want to be when I grow up as a neurologist.

Dr. Michael Kentris [00:19:38]:

Is that Dr. Williams?

Dr. Jamie Wright [00:19:39]:

Yes, that's Mike Williams.

Dr. Michael Kentris [00:19:40]:

I think I heard him speak at the plenary session at the Academy meeting just this year.

Dr. Jamie Wright [00:19:43]:

Oh, really?

Dr. Michael Kentris [00:19:44]:

I think he he had a pro and anti does NPH exist debate. It was quite  entertaining. He gave very good account of himself.

Dr. Jamie Wright [00:19:52]:

Yeah, that's very cool. Yeah, he also does, you know, he also treats a lot of patients normal pressure hydrocephalus, which is kind of its own thing genre, its own thing among hydrocephalus. But yes, he's helped me out so much over the years. I think the first time I actually flew up to see him and have ICU bound and a train done here in 2019, back when I still lived in Texas, I traveled up here to get his input and testing. And he just knows so much about shunts, and it's so fun talking to him because he gets since I got a new Sean system last year and I can hear it now, I can hear the CSF going through it sometimes when it's like, going really fast, when it's high pressure and draining a lot. And I told him about it because I've heard people talk about being able to hear it, and I thought it was crazy. And I asked him about it, and he's like, oh, yeah. And he started talking about the science behind it and the type of valve that you can hear it with. And we both got really excited. And it's so fun talking to somebody who can get as excited about hydrocephalus society.

Dr. Michael Kentris [00:20:42]:

It's really excellent that you found a physician who is that passionate, but you kind of alluded earlier that not all physicians are necessarily as, say, kind hearted, perhaps very true.

Dr. Jamie Wright [00:20:54]:

I was going to say I've been very fortunate. I've lucked out. But all of my surgeries up until the last two years were done by pediatric neurosurgeons. And so I lucked out in that I found pediatric neurosurgeons who would still manage my care, and I still have a pediatric neurosurgeon on my team here.

Dr. Michael Kentris [00:21:10]:

So being active in kind of the online sort of support community as you are, is it a common experience that people will go to their neurosurgeon and be like, oh, well, your ventricles are normal size, you need to see a neurologist. Or then they go see the neurologist and it's like, well, it's your shunt. And so you end up kind of stuck in the middle of this contest between your two neuropositions, essentially. Is that a common story?

Dr. Jamie Wright [00:21:38]:

It is. I mean, thankfully, my situation with the ventricular, non compliance, last I heard, it's maybe about 10%, although I think it may actually be more than that. So it's not as common a phenomenon. But yeah, there's still plenty of patients out there who even who get stuck in the middle between either neurosurgery just not listening to them and sending them or wanting them to go to somebody else or I do strongly. Advocate for patients to also have a neurologist. Because if remembering back to that long story, it was my neurologist who was like, this is your shunt. This is a shunt issue at the beginning and advocated for me from that standpoint. And so I'm biased. But I think a neurologist is an important part of the team for patients with hydrocephalus, even if we don't do surgery, we still, like, wear the great diagnostic. But also, it can be very challenging for patients to find neurosurgeons who will take on a patient with hydrocephalus, especially with those complex patients whose ventricles don't enlarge anymore or have a seemingly functioning shunt but are still having. Headaches due to over drainage or under drainage and who are patient enough to figure out try different valves and try different settings and figure that issue out.

Dr. Michael Kentris [00:23:30]:

Now, I have to ask, I can't help but notice that you are an adult neurology training program and not a child neurology. So what happened?

Dr. Jamie Wright [00:23:42]:

Well, it really comes back to that because I thought going into medical school, I thought I was going to do pediatric neurology because that's where you see a lot of hydrocephalus. But after talking to all these young adults looking for hydrocephalus care and seeing the need in the adult world, that's when I made the decision to do adult neurology instead of pediatric.

Dr. Michael Kentris [00:24:16]:

That makes complete sense.

Dr. Jamie Wright [00:24:19]:

Yeah. And so I hope to help fill that gap and encourage others to help fill that gap for patients with hydrocephalus. I think it's definitely an opportunity.

Dr. Michael Kentris [00:24:35]:

Excellent. So you're in your second year right now, is that right?

Dr. Jamie Wright [00:24:40]:

That's correct.

Dr. Michael Kentris [00:24:41]:

And with shunt malfunctions with chronic headaches, I think anyone who's been through residency can say it's hard. Even if you aren't dealing with a chronic medical issue. How have you been holding up so far?

Dr. Jamie Wright [00:24:57]:

It's been rough. As I mentioned, I had two surgeries during intern year, and I had two hospitalizations two surgeries during intern year. And thankfully the internal medicine program director was very nice about it and helped me back in and everything. But I've continued to have like, my headaches have worsened and I've continued to have shunt issues since then. And so I had another well neurosurgical procedure in March of this year, and after that, Dr. Williams and my neurosurgeon, Dr. Bono, who's also been fantastic, they were both like, you're torturing yourself trying to work through these issues and these setting changes and these ICP changes and everything. And they're like, I think you should take extended leave of absence, because at that time, I was only planning to take a month to I was like, okay, we're going to do the procedure, figure things out, and then I'll keep going. And they're like, no, we think you should take longer. And so I did make the difficult decision to take a six month medical leave. Thankfully, my program has been very patient with me about doing that because I know it's very hard on them because neurology programs aren't huge like internal medicine, but they've been patient and I've been on medical leave and we've been slowly kind of adjusting my shunt, trying to figure things out. And as I said, I'm very fortunate to have a wonderful medical team. I think I have around like twelve or 13 doctors following me right now. It's a lot of appointments. My weeks are generally full of appointments. But, yeah, we're we're working on it and hoping that hopefully I'll be able to get back better than ever.

Dr. Michael Kentris [00:27:13]:

You have obviously made a lot of progress. A lot of kids with hydrocephalus don't grow up and get double doctorates, so I think you've posted a little bit about this in the past online as well. But for kids who have hydrocephalus or families who have children with hydrocephalus, what do you think is the most important thing for them to know and to keep in mind as they go into the future?

Dr. Jamie Wright [00:27:40]:

It sounds very cliche, but keep your mind open and anything's possible. Don't limit yourself or limit your child or out of fear of, oh, but they have hydrocephalus. And hydrocephalus, it's very much a spectrum and it affects everybody differently. But there's so much we can we as patients with hydrocephalus, there's so much we can do and there's so much possibility. And my advice to parents is always let support your child in any way possible. By support, that can also mean therapy, special education classes, and, you know, all those supportive measures or like, accommodations can also be very helpful and very important to helping them succeed and do everything they want to do, but don't knowingly or unknowingly hold them back or restrict to them because of a diagnosis.

Dr. Michael Kentris [00:29:02]:

Excellent. Well said. Any final thoughts that you would want to share with our audience today?

Dr. Jamie Wright [00:29:08]:

Yeah, well, we kind of talked about this a little bit earlier that I think part of that aspect of not limiting yourselves is the medical community not limiting and taking a chance on physicians with chronic medical conditions and disabilities and making them apart, because I'm very fortunate to be able to share my experience with my co. Residents and even my attendees sometimes, my experience as a patient and what I've kind of gleaned from those from that.

Dr. Michael Kentris [00:29:51]:

Do you want to dive into that for a minute? I know you've said, yeah, you've had mostly good experiences, but I know well, I shouldn't say, I shouldn't assume, let me lay. Medical training can be grueling and insensitive to people at the best of times. How has your experience done?

Dr. Jamie Wright [00:30:13]:

It can be grueling and insensitive at the best of times, you know, and well, and that's where I like, I don't know how much I want to get into, like, the nitty gritty of, you know, who who did what and what what were good decisions versus not so great decisions or not so beneficial decisions. But I will say, like, overall, I have had some amazing support from during my residency training and everything, from them just being patient with me to checking up on me, doing mill trains, going above and beyond. I've also had some not so great support during residency training. We're all human and we all have our moments, and residency training is very grueling, and it's hard on my co residents and my programs, me not being able to be there for six months and them having to cover for me for six months. And I definitely appreciate that. I think the system as a whole can definitely do better as far as making things more accommodating to residents with disabilities and chronic health issues. Because, as I said, I think we have a lot to give. We have a lot of additional perspective and additional knowledge that not every trainee has because everybody has different experiences. And so I think there's a lot of to add there and there's a lot of benefit. And I think it's worth making some accommodations to help those help residents like me succeed. And the accommodations process is tough, and it's tough at every level. I will say I had accommodations because of all the surgeries and everything. I had accommodations starting in grad school well, actually starting in undergrad and then grad school in my last year of medical school. And some people who aren't dealing with disabilities or aren't dealing with chronic illness think accommodations give people with disabilities or kind of give them an unfair advantage in situations. Sometimes people have that idea or that kind of bitterness, and I could see how it'd be especially strong in residency training because we are all pushed to our limits. But the process for getting and coming up with accommodations is incredibly hard. I've spent so much of my free time in meetings, and so that's just kind of some food for thought as far as that goes. And I think that process can be made, can be simplified and made more, made easier and more approachable, and I think a lot of residents would benefit from that. Lisa Meeks does great research on doctors with disabilities, and, yeah, I think she came out with some recent research that showed, like, 52% of residents with disabilities never go through the accommodations process, never even try to get accommodations. And that's a whole nother conversation, maybe for another day.

Dr. Michael Kentris [00:34:23]:

Yeah, it does speak to the kind of the underlying philosophy. I hesitate to use the word philosophy, but, like, kind of mental state of medical training as a whole, which is still very much entrenched in many corners of the United States, where it's like, you have to be this sacrificial lamb on the altar of health care in order to get everything. You'll pardon my overwrought imagery, but I've been very fortunate with my own health thus far in my life. But I've had co residents who had really bad ADHD or conversely, insomnia or other things. Their cognitive performance just suffers. And while I'm part of the 80, I'm doing air quotes here. 80 hours work week limitations. I think everyone knows that at some point. These are a little bit of a fiction, and you're awake for over a day, and if you're already having health issues, probably not great. For those health issues, it's not great. I worry this is my own neurosis kicking in, like, all these times, being on call or not having seven plus hours of sleep per night. How many years have I shaved off my life? How much higher is my risk for dementia? I don't know. Probably it's probably more than it would have been.

Dr. Jamie Wright [00:35:56]:

Yeah. It's significant for all of us, and I'm grateful that there is a push in general, like, overall, to make residency more and health care more humane, honestly, because it's not humane right now.

Dr. Michael Kentris [00:36:19]:

I saw a Twitter thread just a couple of days ago, get into the rabbit trails for a second. It was saying, like, keep the work schedule, but bring back the cocaine. For those who aren't familiar, when residency programs were being developed back in the 18 I think it was the 18 hundreds. I might be a little off on my decades. Maybe it was the 1910s, but the people in charge of it were a little bit high on cocaine, and hence we're able to get an incredible amount of work done anyway, tongue in cheek. I'm not truly advocating for everyone in health care to be on cocaine.

Dr. Jamie Wright [00:37:03]:

But.

Dr. Michael Kentris [00:37:03]:

It would be nice to get something's got to give. Just saying more regular sleep would be good for everybody, right?

Dr. Jamie Wright [00:37:10]:

Right. Very true. Well, very true.

Dr. Michael Kentris [00:37:13]:

Dr. Wright, thank you again for coming on. Where can people find you online or and what resources, if any, would you recommend people with hydrocephalus or those taking care of someone with hydrocephalus should seek out?

Dr. Jamie Wright [00:37:25]:

So as far as resources, the Hydrocephalus Association is a great resource. It's a great resource for both patients and clinicians because they have a whole publication search engine. They're available on their website, and the website is hydroassoc.org, so hydroassoc.org. And they also have great support resources, community network resources. So if you have patients with hydrocephalus, definitely check them out. And I've been a volunteer with them for quite a while, and they're just amazing and do amazing work. And then as far as please come find me if you have any questions or if you just want to kind of see what I'm doing, I'm on Twitter and Instagram as Shunted, MDPhD. My Name Jamie Wright is on all of my pages as well.

Dr. Michael Kentris [00:38:43]:

That's a great handle, by the way. Thank you so much. I'll make sure to put links in the Show Notes to the Society and to your accounts as well. All right, thank you again so much. It's been a pleasure chatting with you.

Dr. Jamie Wright [00:38:57]:

Thank you.

Dr. Michael Kentris [00:38:58]:

I just want to say thank you one more time to Dr. Jamie Wright for coming on and sharing her unique experiences with us. And I'll leave a link to her socials as well as the organizations she recommended in the Show Notes below. As always, if you enjoyed this podcast, please make sure to rate and review us on Apple, Spotify or wherever you're getting your podcasts. This helps with the algorithm and getting the show noticed by other people. Also, please make sure to subscribe for future episodes, and you can find me on Twitter @DrKentris or by email at theneurotransmitterspodcast@gmail.com with any questions or show suggestions. And those contacts are also in the Show Notes below. 

Thank you again for listening and we'll see you all next time.