July 11, 2025 • 42 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by future speech pathologist, Kai.
We get into pre-op panic, brain surgery and the early warning signs of hydrocephalus.
Follow Kai on Instagram @my.badass.brain
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically.
The sickest people. We know I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, Kai, to Chronically the
(00:33):
Sickest podcast. How are you?
I'm great. How are you?
I'm good. I'm just genuinely so happy that
you're on the podcast and to like actually get to talk to you
'cause I feel like we've known each other via Instagram for a
hot second here, so this is evenmore fun.
Yeah, I'm so excited. Well, for the listeners who may
(00:55):
not be following you on Instagram right now or don't
know who you are, tell me a little bit about yourself.
Yeah, So my name is Kai. I'm a multiply disabled student,
an advocate. I I've just finished my
bachelor's degree in psychology.This.
Last. Week yes, very exciting and
(01:15):
planning to do a master's in thefall in speech language
pathology, which I'm very excited about.
Yeah, I'm passionate about disability justice and equity in
healthcare. So my advocacy has a strong
focus on that. Yeah, in in my, in my free time,
I enjoy creative writing, learning new things, research,
(01:37):
especially about like health andthe brain.
Yeah. And then spending time with
loved ones, family and friends. Of course.
Oh my goodness. Wow.
What a what a wide array of likehobbies and different things.
(01:59):
Oh my goodness. To be like creative writing, but
also really into like activism and then like health research.
I feel like those don't always go hand in hand.
So I think that's very interesting.
Yeah. I feel like you saying that
you're really interested in the brain is such subtle
(02:19):
foreshadowing for what we're talking about today.
But before we get into it, I want to ask the question, what
do you think makes you chronically the sickest person
you know? Well, my brain has a flooding
problem essentially, so that's pretty sick.
(02:41):
Yes, yes, it is. And what a very funny way to put
that. Oh, my goodness.
You know, I'm just imagining, you know, in the mountains where
they're like, prone to flooding and there's like a little sign.
I'm just imagining there's like 1:00 somewhere in your brain.
Probably. Yep.
OK, amazing answer. Well, then let's hop right into
(03:02):
it. So I mean, before the podcast, I
did ask you how to pronounce this.
Full disclosure for everyone listening, but you have
congenital hydrocephalus. Yes.
And that's normally diagnosed when you're a baby, but you're
not a baby. Yeah, that's right.
I guess we'll talk a little bit about what this condition is.
So it's a buildup of cerebrospinal fluid in the brain
(03:24):
leading to enlarged ventricles, which are the fluid filled
spaces. And there are a few different
types, but mine is obstructive. So it's a blockage in the flow
of the cerebral spinal fluid causing that fluid buildup and
an increase in pressure inside the skull.
And this can be this specific kind can also be caused by
(03:47):
different things. But for me it's a malformation
that I was born with, where the passageway that drains the fluid
is abnormally narrow. And so this type would normally
be diagnosed shortly after birthor in infancy.
Usually it shows signs pretty early on.
A minority of cases the brain somehow compensates for that
(04:12):
pressure. And sometimes people go can go
their entire lives without having any problems, and other
times they develop issues later on like I did.
Wow. I can't imagine being like 75
and going into the doctor for something really random and then
being like, oh, you have like a birth defect and you're like,
what? I've heard of this happening,
(04:34):
like people in support groups being like, Oh yeah, I just
found out I'm like 80 years old.Oh, my goodness.
Wow. OK, but even being in like your
20s and finding out, that must have been insane.
Tell me, tell me a little bit about that.
Yeah. So it kind of started like I
(04:54):
said, I didn't really have any symptoms of this growing up, but
when I was 20, so this was like 2021, I started noticing some
double vision that would come and go.
And first it was like quite subtle.
(05:15):
I didn't really think much of it, like there can be different
things that caused that. I thought it was just like eye
strain or whatever. And then it got more constant
and I started developing these weird headaches that were not
like anything I had ever experienced before.
It felt like almost like my brain was being squeezed from
(05:38):
the inside and I would like try to describe that to doctors and
they would think I was talking about attention headache.
And I was like, no, that's not, that's not what I'm saying.
But so it took took a bit of time after I started
experiencing symptoms to get an MRII mean not terribly long.
(05:58):
It was like 6 months. And that very unexpectedly
showed this condition because I was not expecting really
anything to show up, but definitely not this.
I wouldn't. I couldn't imagine.
Right. You were like, of course this is
just going to be like another doctor telling me it's just a
fancy tension headache. Get it together.
(06:19):
Yeah, exactly. Wow.
And so the doctor kind of looking at your scans was, were
they just as surprised as you were?
Yeah, it was, it was a weird experience.
I this might have been like during one of the peak COVID
periods possibly I don't know. But I had the diagnosis told to
(06:43):
me over the phone by my doctor, like my primary care doctor.
Wow. And he just, he just called and
he just read word for word the MRI report.
And he, I was asking him like, OK, like what does this mean
though? And he like couldn't really tell
me like he was, he was seemed like unfamiliar territory to him
(07:08):
that an adult would be diagnosedwith such a thing and not have
had any problems sooner. So he was just kind of like, I
don't know. But he did consult A
neurosurgeon over the phone. And this guy, I'm not sure, not
sure what he was thinking, but he told my doctor that, you
(07:33):
know, if I hadn't had any problems up to this point, like
my symptoms were definitely not related to the very obvious
problem in my brain. And you know, I, I don't need
any follow up for this, but I did my own research as you do.
(07:56):
And what he was saying seemed tocontradict like all the
information out there. And I was like, not sure that.
And he was also like describing symptoms that would be
concerning. But he was describing a
different form of hydrocephalus that is more present in like
older adults that is this completely different thing.
(08:19):
So I was like, I'm not, I'm not taking his word for it.
Like everything I was reading was saying like it can be or
usually is a life threatening condition if it's untreated.
And like you can't have cases where it's what they call like
compensated or arrested, where it's the ventricles are large
(08:42):
but the pressure is not increased and you don't have any
symptoms or any problems. But I was experiencing symptoms
and it was saying that the only treatment is like surgery.
So I I asked my primary care doctor to refer me to someone
else. It ended up being a neurologist
(09:02):
instead of instead of a neurosurgeon because the like it
would, I don't know directly being referred to a neurosurgeon
from the primary care was like it would take longer.
He thought so. It was still a long wait, but it
was like a year and a half from because I know it's, I mean,
(09:25):
it's Canada. Wait times are different
sometimes. Yeah, but yeah.
It was a year and a half from the time I had the MRI and was
diagnosed to the time I saw a neurologist and got a second MRI
at that time that showed a bit of progression, like the
(09:46):
ventricles had gotten a little bit larger.
It wasn't like super quick thing, but it was showing that
it was progressing. And that made sense because my
symptoms had been getting like slowly worse.
And from there the neurologist was like like he thought like my
symptoms weren't like that bad. Like I can still, you know,
(10:08):
walk. I can still think, you know, I
don't know, like it seems like sometimes doctors, if it's not
like super extreme, they're like, oh, you're fine.
But yeah, but he did just because he didn't know
personally for sure and he wasn't a neurosurgeon.
He did send a referral to a neurosurgeon.
(10:31):
Different one than the first time.
Thanks for yes. And it took another year and a
half from that referral. So it was a total of three years
from the time I got diagnosed tothe time I saw a neurosurgeon in
person. And like that period of three
years was quite stressful because it like it was very
(10:55):
uncertain. There wasn't like a plan at all.
And I didn't know like what my condition really meant.
Like I had heard of instances where people like me that had
had it from childhood, but it just started showing symptoms in
adulthood. Could, like, have a sudden,
(11:17):
like, emergency basically, wherethe pressure would build very
quickly and the like, it could be deadly.
It could be like they could go into a coma, like whatever.
So I was always like, like, is something like that gonna happen
before I see the neurosurgeon? Thankfully, no.
But good. Yes, yeah.
(11:42):
So I wasn't totally expecting when I saw the neurosurgeon that
he would say anything needed to be done.
I wasn't, I wouldn't have been shocked if he did.
But I definitely didn't think itwas going to be like a, an
urgent thing because of the response I got from other
doctors. But I saw him and immediately
(12:06):
after looking at my scans, he was like, oh, yeah, like the
pressure is increased. Like we're going to have to do
surgery as soon as possible. Like I'm putting you on a on
emergency list, which didn't mean like I thought emergency
meant like in a few days it didn't like.
It was like, no. So it wasn't like that kind of
(12:29):
emergency, but it was like urgent enough that you could
bypass some of the Super long wait times for Yeah.
So it ended up it was supposed to be within the month and I was
told that I would get a call like at any random time and I
would have like 2 to three days notice before the surgery.
(12:50):
Like I didn't have a a date outright.
And it ended up being 2 like 2 months from the appointment that
I was waiting around for a call.And then I got the call and it
was like 5 days before the surgery.
Hey, that's more than three. No, yeah.
I mean, yeah, that was good. Wow.
(13:11):
OK, so first neurosurgeon respectfully sounds like an
asshole. Definitely.
Neurologist sounded like, yeah, like you said the the doctor
thing where they're like, well, you're not like dead and you're
like, that's thanks, friend. That's why I'm here is to make
sure that doesn't happen. And they're like, yeah, but
you're not yet. And then can't help you.
(13:33):
You get all the way to the finalboss, this this new neurosurgeon
and they're like, Oh my gosh, yeah.
This is like you said, based on your research, which is like
crazy that you had to go to through three doctors to have
someone be like, oh, yeah, this is a problem.
And then so, yeah, two months from your, your quote, UN quote,
(13:56):
like you're on the emergency, like the cancellation list, like
you go 1st. And then So what?
You had brain surgery, girl. I had brain surgery.
Yeah, this was, it's six months ago.
Oh my God. Congrats.
Thank you. Yeah.
So yes, that was very scary. Obviously they were trying like
(14:20):
they try to reassure you and they're like, yeah, it's like
super minimally invasive for brain surgery.
I'm like, yes, but you're still poking around in my brain.
Meaning minimally invasive. Meaning like.
They don't. They do it like a small hole and
use an endoscope rather than cutting open your entire.
(14:40):
Skull, I guess that's nice. Yeah.
I mean, I would rather this thanthat, Yeah.
Yeah. So I don't know.
Yeah. Brain surgery itself is is
daunting. And there was a lot going
through my mind in terms of things that could go wrong.
Yeah. I mean, like it's relatively
safe, sort of, but it's, yeah, still.
(15:05):
Yeah. So there was, it was a lot of
anxiety for those two months, a lot of like overwhelming panic
at times. But somehow, like I, I worked
through it with a therapist and stuff.
And then somehow, I really don'tknow, the day of the surgery I
was like unnaturally calm. Like it was not like like nurses
(15:28):
were like commenting. They were like, you've never had
surgery before, like you're getting brain surgery and you're
this calm. I was like, yeah, don't ask.
I I don't know. You got all your your anxiety
wiggles out before. Yeah, I think that's it.
Like I had exhausted my body's capacity to panic.
So I was just like, it is what it is, yeah.
(15:51):
Wow. OK, so then you you go into
surgery. I'm assuming you're asleep.
This is maybe a dumb question, but you're.
Asleep. Thankfully yes, but not all
brain surgeries are so it's a valid question.
I know. That's why I'm asking.
You know, the like the crazy medical shows where they're
like, now play your guitar so weknow that you can still play
guitar. I'm like, think I'm like, what
did you have to do? Crochet.
Like what? No.
(16:12):
I actually talked to a guy recently who was a musician and
had to play guitar during his brain surgery.
Oh my gosh. Yeah.
I thought it was just in medicalshows.
OK, so you went to sleep. You it, it goes well, obviously,
'cause you're here. But like what?
(16:33):
What happened afterwards? Like what was that recovery
like? Like did you immediately?
Feel better? Well.
It was a lot smoother than I hadexpected for sure.
Like I like pretty much immediately.
Like there was very minimal pain, which they like.
It's not uncommon. They do say that there's like,
(16:53):
it's not a particularly painful procedure.
And part of that has to do with that the brain itself doesn't
have, like, pain receptors. Yeah.
Yeah. So that was good, I guess.
Yeah, Yeah. It wasn't too bad.
I I felt, I was surprised by howlike normal I felt, all things
(17:13):
considered, like just hours after.
To be honest, I'm a little jealous here.
I don't think I've ever had anyone come on the podcast and
be like, I had surgery, woke up,felt my like, felt my best, felt
fine, felt fine and dandy. Yeah, I don't know.
I was, yeah, it was much better than I was anticipating, 'cause
(17:34):
obviously I was anticipating theworst possible experience.
But yeah, OK, surprise. So six months out, you're
feeling good. Like, are you still experiencing
symptoms? I mean, I know it's congenital.
So it's like like. Yeah.
Like it's like surgery isn't a cure, but it does help like the
(17:59):
longer recovery process. Like, although the initial thing
was very smooth, it's like afterthree weeks that I, like I
didn't, I feel like I didn't have like my headaches were a
lot better for the first three weeks.
And part of that probably was that they, when they were in
there, they drained some of the fluid and then like it would
(18:20):
regenerate and stuff. But, and then I started having
headaches again and I kind of freaked out because that can be
a sign that the surgery has failed.
But they don't they don't tell you like how to tell the
difference between regular like symptoms and.
Like. Failure, which can be an
(18:40):
emergency. So it's stressful, but I found
like as I got back into school and stuff because I went back.
Three weeks. After.
Oh Dang. Yeah, in hindsight, I could have
waited another couple weeks, butthat was my surgeon's timeline
advice. Sure, but like he doesn't have
(19:02):
someone poking around in his brain.
No, as far as like my headaches as I was getting back into
normal activities were a lot worse.
And like I yeah, I wasn't I was convinced for a a bit like those
like third week to I don't know,8th week before I had my follow
(19:22):
up that like there was somethinggoing wrong, like it was re like
the hole that they made was closing up or whatever.
But I don't I don't know what. Some people just have a lot of
pain after maybe as their brain is like getting used to the
different pressure dynamics and stuff.
(19:44):
Also there can be like nerve pain from the that they cut into
your head and stuff. Sure, yeah.
And I, I mean, there was also, there was also like a small like
brain bleed after that they didn't tell me about because
(20:05):
because, well, because it. Nothing had to be done about it.
So they were like, well, let's just like not make her anxious.
Like it's small enough that it'snot gonna cause a like it'll
just reabsorb. But that can also cause like a
lot of pain as it's healing. So I like read my CT report
(20:26):
after and I was like that would have been nice to know.
What happened to informed consent?
Don't y'all have to tell me whathappened?
What? This is absurd.
Yeah, yeah. So like a few months after were
a lot of ups and downs and like headaches for a while were
actually worse than they were like before surgery.
(20:46):
But like at my follow up and stuff my surgeon said like it's
not it hasn't failed like it hasn't changed things as much as
we would hope. The fluid filled spaces are
still very large. They've only shrunk by like 2mm,
but that can happen when you've had it your whole life and your
(21:09):
brain has adapted to having it that way.
Sometimes they just, it just doesn't shrink.
And as long as the pressure is not too elevated, you can live
with that. Yeah.
So I just kind of went on with things.
And thankfully, just like the last month and 1/2 or so, things
have started to actually get better, much less intense
(21:32):
headaches, and my vision's gotten better too.
So I think there's lasting changes now.
And it's not unusual being in support groups and stuff that it
does take a few months for you to, you know, start to see those
improvements. So that's definitely reassuring.
Yeah. Yeah.
I'm glad at least it like kind of sort of worked.
I feel like I'd be so mad if I came out of that and I was like,
(21:53):
are you kidding me? I yes, I know like.
This is the. This is what.
This is what's supposed to help,and it didn't do nothing.
Yeah, yeah. Wowzers.
OK, so you had brain surgery foryour unidentified genetic brain
condition. There's still fluid in your
(22:16):
head? That sounds so weird.
So you're right, there is a flooding problem.
Yeah. Hilarious.
Still not funny. Ha ha.
Funny. Weird.
Yeah, I know. I, I like, like humor is so
important in dealing with these things, so I, I, I like it.
I like why I literally met you like an hour ago and I'm over
here laughing at your condition 'cause I'm like, I am so vividly
(22:38):
uncomfortable by the fact that you would have a like
essentially life threatening brain condition and they're just
like. Oopsie days.
As if it doesn't work. Like yeah, love it.
I think I'm more making fun of the doctors than I am your
condition, your condition's you're just you're trying your
best. Yes, yeah, yeah.
(23:00):
So now, like now that you kind of know what in tarnation's
going on with your body and yourhead, what are, what are you
doing now? Like how are you managing your
condition? I know you kind of mentioned
therapy and your support Group Acouple times.
So like what? What can you recommend to other
people who maybe are dealing with similar stuff?
(23:23):
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(23:46):
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(24:06):
That's my pitch, anyway. Yeah, so therapy has been a huge
thing. Like I've been in therapy for
years, like focusing on this specifically a lot this last
year, like in preparing for it and in coping after and mostly
(24:27):
in dealing with like the, the fears and the uncertainty
aspect. And that was like all through
the three years of waiting because it's, yeah, the like the
not knowing kind of is the worstpart for me at least.
So learning to like accept, not knowing and yeah, that
uncertainty has been really important in therapy.
(24:49):
And the support groups are really helpful.
There's many Facebook groups forhydrocephalus.
There's one specifically for this surgery, which was really
great to find because this isn'tthe most common surgery done for
hydrocephalus. The most common 1 is where they
place a shunt. So it's like a mechanical device
(25:15):
that like, yeah, mechanically drains the fluid from your
brain, usually to your abdomen, but it's a little bit more
invasive because there's actually something in there that
they, like, leave there. And for me, it was just that
they put a hole in the in the, yeah, the wall of the ventricle
so that there was an alternate pathway for it to drain.
(25:36):
So yeah, like usually in in manysupport groups, people are
mostly talking about shunts. So it was really good to find
this group that was specificallyfor this surgery.
And then, yeah, my, like, leaning on my support system
more generally. Like, my parents are great.
I'm very lucky to have them. Like they were at the hospital
(25:56):
with me. Both of them.
Yeah. And my sister, she's my best
friend. We laugh a lot about these
things, too. And that helps.
Yeah. So that's.
Yeah. Can I ask, so I know you kind of
said like the shunt is more invasive, which I mean,
obviously if this is your first brain surgery, I too would avoid
(26:18):
the more invasive one. Yeah.
But do you think that's something that like you would do
in the future? Like, is that something that you
thought about? So it's kind of complicated in
my case because of I don't even fully understand it like I've
done. I've read so many papers, I've
ask my doctor questions. It's still like kind of
(26:41):
understanding how different things work.
And but the shunt, so the procedure I had only works for
certain types of hydrocephalus and my type which is called
aqueductal stenosis, which is that congenital narrowing of the
CSF passageway that tends to be like one of the best candidates
(27:06):
for it and especially for adults.
So that was like my surgeon recommended this surgery.
And the problem with shunts, if you have had it for a long time
and your brain has adapted to the pressure is sometimes
sometimes like it will over drain very much.
(27:28):
And then that can cause like brain bleeds and bad stuff.
Like he told me, he told me whenwe were thinking like like when
I was still having symptoms and stuff eight weeks after the
surgery and there wasn't that much improvement, but he was
like, like, we're going to wait and see.
(27:48):
But like, I think it's, we're not going to do anything right
now because if. And he said he wanted to avoid
the shunt if at all possible because he's had another patient
that had a similar case to mine and said they did a shunt and
she had like a massive brain bleed and like has permanent
effects from it. So he's like, I'm not going to
(28:10):
do that if we don't absolutely need to.
Yeah, that's why. But yeah, it is.
I don't know. I guess that kind of is a scary
thought though, because it's notthat uncommon that the surgery
that I had fails at some point. And shunts do too.
Shunts fail a lot, but like, realistically this won't last my
(28:34):
whole life. And like, a second one of these
can be done, but only so many can be done before.
Like the scar tissue builds up and you can't do it anymore.
So at that point you would have no choice but to do a shunt.
And with the risks of that, that's, that's a bit daunting.
But yeah, it's just, yeah, there's a lot of like unknowns
(28:58):
because everyone is different. Like some people only it's, it's
unusual for someone to only haveone surgery in their lifetime
with this condition, but some people only have two maybe or
three. And some people have literally
like 300. I can't imagine.
I've like heard of people who are like 35 and they've had like
(29:21):
200 brain surgeries. So it could go either way
really. I've had 0 Thank you for
explaining that to me. I, I, I'm realizing that as you
were answering the question, I'mlike, oh, that was like a really
deep and probably invasive question to be like, so how do
(29:44):
you think the rest of your life is going to go with a lifelong
brain condition? But.
No, that's what I'm here for. I, I feel like I'm learning a
lot and that makes a ton of sense 'cause you're right, your
brain is kind of used to having like this level of pressure.
I'm sure it's not the right pressure, but if you get a shunt
and all the pressure drains, your brain is like not having a
(30:07):
good time. Exactly, Yeah.
Wow. OK, OK.
Wow I mean I interview a lot of people but I don't know why but
like talking about someone's brain or like heart is always so
scary 'cause it's like you'll only get one.
Is that? Yes, Exactly.
(30:27):
Yeah. I mean, I guess with the heart
you could get a heart transplant, but like, you know
what? I mean, I guess you can't get a
Yeah, unfortunately, brain transplants are not.
No. They're not, which is.
OK, sorry. My brain is like I yeah, but
that'd be so interesting. Sorry.
OK. I'm like, oh, how would that
work? I'm sure they've tried.
(30:50):
I really appreciate the way thatyou kind of gave your your tools
that you're using. And a lot of them are abstract
in the sense where it's like therapy, a support group lean on
people when so when we're talking about like physical
tools or like tips and tricks, like when you're having your
headaches, like what do you do? Like how are you handling that?
(31:14):
I have this really funny lookingit's for designed for migraines
I think, but it's like a hat type thing that has ice in it
that's been really helpful. Do you have 1 you?
Yeah, I have a migraine. Hat like sunglasses because
light sensitivity sometimes, which I never like my headaches
(31:36):
were never, never had light sensitivity before the surgery
and then after they did, which is kind of weird but yeah.
So that is all. Another thing like Tylenol.
Yeah. Like like brain, brain rest kind
of thing, like laying in a dark room, like kind of like when you
(31:59):
have a concussion, like how theytell you to lay in a dark room
and not look at screens or anything.
I found that if I'm having a lotof headaches, that is helpful,
but it's also not that practicalwhen you're in school and have
things to do. Right.
That makes sense. And I mean, you're going for
your master's. You went back to school three
(32:20):
weeks after your surgery. So yeah, I'm getting that maybe
that that may be hard to just not do nothing.
That's very smart though, to just like, take brain breaks.
Yeah, I feel like. Even if you don't have a scary
brain condition, brain breaks are good.
Yes, for sure. OK, those are, those are some
(32:41):
good options. Sorry.
I just, I always like to see like kind of what physical stuff
people are using 'cause it's always so fun to see the
crossover, you know, like you use a migraine cap, Are they
technically migraines? No, but also like it works.
Maybe someone hasn't tried it yet.
Yeah. Well, besides all these like,
(33:04):
tools and things that you're using, which I also just like,
really love the support group thing because like you said,
it's such like a wide array of people that have this condition.
What, like what else do you wantto leave the listeners with
before maybe we wrap up the app?So maybe a few things that I've
learned along this journey and then a little little PSA on
(33:27):
signs to look out for because itwas it was missed in my
childhood and there were in hindsight some signs that.
So. OK, yeah.
So things that I've learned for sure, the importance of self
advocacy, of listening to your body and trusting your gut,
'cause I think if I would have just taken that first
(33:49):
neurosurgeon at his word, I might be in a very different
place right now, you know? So that's very important.
Also, for me, it's this experience has really boosted my
confidence that I can handle hard things because it was
something that I really didn't think.
Like, it was kind of like my worst nightmare in a way.
(34:10):
Like, I don't know, it's so weird When I was a kid, like, my
worst fear was like getting surgery.
I don't know why. It was just.
Yeah. And.
Fair. And this is a funny thing.
Like I figured out when I was a kid that I probably had OCD from
like a weird personality test, which I do.
(34:34):
I was later diagnosed but and then I was like I don't know
what this is. Wait, does it require surgery?
Look up. Does OCD require brain surgery?
It said no and then I was like OK, I'm good then disregard.
Not you having OCD about needingsurgery for OCD.
And then I ended up having brainsurgery.
(34:56):
But. And I got through it, which is,
yeah. And I think like a lot of us
underestimate like what we're able to get through when we need
to and like how resilient we are.
So yeah, I think it's important to believe in your strength.
(35:18):
The, I've also learned very muchthe, the power of community in
the support groups and in my since starting my Instagram
page, just the wonderful people I've met and the connections
I've made. Yeah, very great.
And then probably the most like impactful thing that I've gained
and mostly through therapy is, which has been very difficult
(35:42):
for me because I am a control freak, like letting go of the
need for control and certainty in our lives because this like
brain, like surgery, brain surgery, all of it.
There's so much uncertainty and you like, you have no control
once you go in the operating room.
It's just like you. It's a huge leap of faith.
(36:03):
And I was, I was so uncomfortable with that and so
like terrified by it. But yeah, I kind of learned that
like, you have to really focus on the things that you can
control and then let those things go that you can't because
otherwise you're just stuck and you can't move forward.
And it just makes it harder on you and you're going to have to
(36:25):
deal with it anyway. So yeah, that like acceptance of
uncertainty has been really a big thing.
It's a good one. Yeah, yeah.
And then PSA for the signs to look out for.
So the thing for me was I didn'thave any symptoms really, but a
(36:49):
major thing in infants with hydrocephalus is very large
heads and or like very rapidly growing because it's trying to
like make space for all the fluid and stuff.
And when the the fontanel hasn'tclosed yet, like it can expand.
(37:12):
And that's actually why probablythat I was able to not have
major problems from it because it was like before, before that
had closed. And then, yeah, I don't know,
there's other things too 'cause some people their head gets big,
but they still have problems. But yeah, so the IT was pretty
obvious too. Like at birth my head was at the
(37:36):
5th percentile, so small. And then by a year it was like
the 98th and then it was like 99.8 at like 15 months.
And it's so like I did have it measured at the doctor every
time. And my mom still has the little
papers that they gave her with the measurements, but they never
(37:57):
said anything about it being even it being like a bit large.
But oh, it's OK. Like they didn't say anything,
which is is strange. And it's very obvious looking
back at baby photos. Like I showed other people and
they're like, how did how did noone need to look in there?
(38:17):
Wow, yeah, out of no one thing to look in there.
That's funny. So that's a big thing for like
parents, if your baby has an abnormally large head, maybe he
has to talk to her about it. For me, there was some like mild
motor delays, but it wasn't likeextreme enough that it was
(38:40):
concerning. It was kind of like borderline
and then if the eyes are a little bit weird, misaligned or
whatever, like I've always had alittle bit of a, one of my eyes
is not quite aligned with the other.
Like it drifts outwards and it got it that actually, I didn't
mention that, but it got a lot worse over these last few years
(39:02):
where it was actually like partially paralyzed and would
not like that's gotten better since the surgery, which is
reassuring. Oh.
Good, something worked. Yeah.
And then other signs to look outfor would be headaches,
obviously in a baby, like a bulging soft spot, fontanelle,
vomiting, lethargy, seizures, sunsetting eyes, which is like
(39:25):
when the eyes are fixed in a downward gaze and developmental
delays. That's that's my PSA for Yeah,
be aware. No, that's, that's good.
I appreciate you doing that 'cause I do have quite a few
parents who listen, I mean, I know most first time parents are
(39:47):
already like, oh God, there's got to be something wrong.
I need to make sure that the baby is fine and everything is
good. But it's also like if you're
literally just looking for like,hey, is my baby's head big And
like, are their eyes moving correctly?
Like we're good. Like these are big signs to look
out for and also for like. Adults they can be like Oh my
(40:09):
gosh I also am experiencing XYZIcan bring this to my doctor and
be like hey hydrocephalus yes nothank you Oh my goodness your
story is like insane and you told it so well and you you
brought so much information and like research we love I'm.
(40:31):
Glad. So you did kind of mention your
Instagram page if the listeners?Enjoyed hearing your story and.
Perhaps want to connect or hear more?
Where can they find you? It is at my dot badass dot brain
on Instagram. Yeah, the cutest name.
(40:53):
Thank you and I love it. It's like your profile picture
right now is like a picture of your MRI, right?
It is, yeah. Which is so fun.
I like, I kind of thought it waslike a band logo or something
when I think you first followed me and I was like weird.
And then I clicked on it and I was like, Oh my God, it's a
brain. So I mean, that is pretty
badass. Thank you.
(41:16):
Well. Kai, thank you so much for being
on the podcast. I genuinely had so much fun
talking to you. If you're open to it I would
love to do like a 10 minute bonus episode with.
You and kind of. Get to know you a little more.
Thank you so much for having me.Oh, of course.
(41:36):
Girl, this is so fun. OK, listener, that is all we
have for you today. Otherwise, I'm Clark, this is
Kai, and this has been chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(41:57):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(42:22):
Disclaimer, this is a conversational podcast and while
we make sure our diagnosis journey, symptoms and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically.
The sickest people. We know I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, Kai, to Chronically the
(00:33):
Sickest podcast. How are you?
I'm great. How are you?
I'm good. I'm just genuinely so happy that
you're on the podcast and to like actually get to talk to you
'cause I feel like we've known each other via Instagram for a
hot second here, so this is evenmore fun.
Yeah, I'm so excited. Well, for the listeners who may
(00:55):
not be following you on Instagram right now or don't
know who you are, tell me a little bit about yourself.
Yeah, So my name is Kai. I'm a multiply disabled student,
an advocate. I I've just finished my
bachelor's degree in psychology.This.
Last. Week yes, very exciting and
(01:15):
planning to do a master's in thefall in speech language
pathology, which I'm very excited about.
Yeah, I'm passionate about disability justice and equity in
healthcare. So my advocacy has a strong
focus on that. Yeah, in in my, in my free time,
I enjoy creative writing, learning new things, research,
(01:37):
especially about like health andthe brain.
Yeah. And then spending time with
loved ones, family and friends. Of course.
Oh my goodness. Wow.
What a what a wide array of likehobbies and different things.
(01:59):
Oh my goodness. To be like creative writing, but
also really into like activism and then like health research.
I feel like those don't always go hand in hand.
So I think that's very interesting.
Yeah. I feel like you saying that
you're really interested in the brain is such subtle
(02:19):
foreshadowing for what we're talking about today.
But before we get into it, I want to ask the question, what
do you think makes you chronically the sickest person
you know? Well, my brain has a flooding
problem essentially, so that's pretty sick.
(02:41):
Yes, yes, it is. And what a very funny way to put
that. Oh, my goodness.
You know, I'm just imagining, you know, in the mountains where
they're like, prone to flooding and there's like a little sign.
I'm just imagining there's like 1:00 somewhere in your brain.
Probably. Yep.
OK, amazing answer. Well, then let's hop right into
(03:02):
it. So I mean, before the podcast, I
did ask you how to pronounce this.
Full disclosure for everyone listening, but you have
congenital hydrocephalus. Yes.
And that's normally diagnosed when you're a baby, but you're
not a baby. Yeah, that's right.
I guess we'll talk a little bit about what this condition is.
So it's a buildup of cerebrospinal fluid in the brain
(03:24):
leading to enlarged ventricles, which are the fluid filled
spaces. And there are a few different
types, but mine is obstructive. So it's a blockage in the flow
of the cerebral spinal fluid causing that fluid buildup and
an increase in pressure inside the skull.
And this can be this specific kind can also be caused by
(03:47):
different things. But for me it's a malformation
that I was born with, where the passageway that drains the fluid
is abnormally narrow. And so this type would normally
be diagnosed shortly after birthor in infancy.
Usually it shows signs pretty early on.
A minority of cases the brain somehow compensates for that
(04:12):
pressure. And sometimes people go can go
their entire lives without having any problems, and other
times they develop issues later on like I did.
Wow. I can't imagine being like 75
and going into the doctor for something really random and then
being like, oh, you have like a birth defect and you're like,
what? I've heard of this happening,
(04:34):
like people in support groups being like, Oh yeah, I just
found out I'm like 80 years old.Oh, my goodness.
Wow. OK, but even being in like your
20s and finding out, that must have been insane.
Tell me, tell me a little bit about that.
Yeah. So it kind of started like I
(04:54):
said, I didn't really have any symptoms of this growing up, but
when I was 20, so this was like 2021, I started noticing some
double vision that would come and go.
And first it was like quite subtle.
(05:15):
I didn't really think much of it, like there can be different
things that caused that. I thought it was just like eye
strain or whatever. And then it got more constant
and I started developing these weird headaches that were not
like anything I had ever experienced before.
It felt like almost like my brain was being squeezed from
(05:38):
the inside and I would like try to describe that to doctors and
they would think I was talking about attention headache.
And I was like, no, that's not, that's not what I'm saying.
But so it took took a bit of time after I started
experiencing symptoms to get an MRII mean not terribly long.
(05:58):
It was like 6 months. And that very unexpectedly
showed this condition because I was not expecting really
anything to show up, but definitely not this.
I wouldn't. I couldn't imagine.
Right. You were like, of course this is
just going to be like another doctor telling me it's just a
fancy tension headache. Get it together.
(06:19):
Yeah, exactly. Wow.
And so the doctor kind of looking at your scans was, were
they just as surprised as you were?
Yeah, it was, it was a weird experience.
I this might have been like during one of the peak COVID
periods possibly I don't know. But I had the diagnosis told to
(06:43):
me over the phone by my doctor, like my primary care doctor.
Wow. And he just, he just called and
he just read word for word the MRI report.
And he, I was asking him like, OK, like what does this mean
though? And he like couldn't really tell
me like he was, he was seemed like unfamiliar territory to him
(07:08):
that an adult would be diagnosedwith such a thing and not have
had any problems sooner. So he was just kind of like, I
don't know. But he did consult A
neurosurgeon over the phone. And this guy, I'm not sure, not
sure what he was thinking, but he told my doctor that, you
(07:33):
know, if I hadn't had any problems up to this point, like
my symptoms were definitely not related to the very obvious
problem in my brain. And you know, I, I don't need
any follow up for this, but I did my own research as you do.
(07:56):
And what he was saying seemed tocontradict like all the
information out there. And I was like, not sure that.
And he was also like describing symptoms that would be
concerning. But he was describing a
different form of hydrocephalus that is more present in like
older adults that is this completely different thing.
(08:19):
So I was like, I'm not, I'm not taking his word for it.
Like everything I was reading was saying like it can be or
usually is a life threatening condition if it's untreated.
And like you can't have cases where it's what they call like
compensated or arrested, where it's the ventricles are large
(08:42):
but the pressure is not increased and you don't have any
symptoms or any problems. But I was experiencing symptoms
and it was saying that the only treatment is like surgery.
So I I asked my primary care doctor to refer me to someone
else. It ended up being a neurologist
(09:02):
instead of instead of a neurosurgeon because the like it
would, I don't know directly being referred to a neurosurgeon
from the primary care was like it would take longer.
He thought so. It was still a long wait, but it
was like a year and a half from because I know it's, I mean,
(09:25):
it's Canada. Wait times are different
sometimes. Yeah, but yeah.
It was a year and a half from the time I had the MRI and was
diagnosed to the time I saw a neurologist and got a second MRI
at that time that showed a bit of progression, like the
(09:46):
ventricles had gotten a little bit larger.
It wasn't like super quick thing, but it was showing that
it was progressing. And that made sense because my
symptoms had been getting like slowly worse.
And from there the neurologist was like like he thought like my
symptoms weren't like that bad. Like I can still, you know,
(10:08):
walk. I can still think, you know, I
don't know, like it seems like sometimes doctors, if it's not
like super extreme, they're like, oh, you're fine.
But yeah, but he did just because he didn't know
personally for sure and he wasn't a neurosurgeon.
He did send a referral to a neurosurgeon.
(10:31):
Different one than the first time.
Thanks for yes. And it took another year and a
half from that referral. So it was a total of three years
from the time I got diagnosed tothe time I saw a neurosurgeon in
person. And like that period of three
years was quite stressful because it like it was very
(10:55):
uncertain. There wasn't like a plan at all.
And I didn't know like what my condition really meant.
Like I had heard of instances where people like me that had
had it from childhood, but it just started showing symptoms in
adulthood. Could, like, have a sudden,
(11:17):
like, emergency basically, wherethe pressure would build very
quickly and the like, it could be deadly.
It could be like they could go into a coma, like whatever.
So I was always like, like, is something like that gonna happen
before I see the neurosurgeon? Thankfully, no.
But good. Yes, yeah.
(11:42):
So I wasn't totally expecting when I saw the neurosurgeon that
he would say anything needed to be done.
I wasn't, I wouldn't have been shocked if he did.
But I definitely didn't think itwas going to be like a, an
urgent thing because of the response I got from other
doctors. But I saw him and immediately
(12:06):
after looking at my scans, he was like, oh, yeah, like the
pressure is increased. Like we're going to have to do
surgery as soon as possible. Like I'm putting you on a on
emergency list, which didn't mean like I thought emergency
meant like in a few days it didn't like.
It was like, no. So it wasn't like that kind of
(12:29):
emergency, but it was like urgent enough that you could
bypass some of the Super long wait times for Yeah.
So it ended up it was supposed to be within the month and I was
told that I would get a call like at any random time and I
would have like 2 to three days notice before the surgery.
(12:50):
Like I didn't have a a date outright.
And it ended up being 2 like 2 months from the appointment that
I was waiting around for a call.And then I got the call and it
was like 5 days before the surgery.
Hey, that's more than three. No, yeah.
I mean, yeah, that was good. Wow.
(13:11):
OK, so first neurosurgeon respectfully sounds like an
asshole. Definitely.
Neurologist sounded like, yeah, like you said the the doctor
thing where they're like, well, you're not like dead and you're
like, that's thanks, friend. That's why I'm here is to make
sure that doesn't happen. And they're like, yeah, but
you're not yet. And then can't help you.
(13:33):
You get all the way to the finalboss, this this new neurosurgeon
and they're like, Oh my gosh, yeah.
This is like you said, based on your research, which is like
crazy that you had to go to through three doctors to have
someone be like, oh, yeah, this is a problem.
And then so, yeah, two months from your, your quote, UN quote,
(13:56):
like you're on the emergency, like the cancellation list, like
you go 1st. And then So what?
You had brain surgery, girl. I had brain surgery.
Yeah, this was, it's six months ago.
Oh my God. Congrats.
Thank you. Yeah.
So yes, that was very scary. Obviously they were trying like
(14:20):
they try to reassure you and they're like, yeah, it's like
super minimally invasive for brain surgery.
I'm like, yes, but you're still poking around in my brain.
Meaning minimally invasive. Meaning like.
They don't. They do it like a small hole and
use an endoscope rather than cutting open your entire.
(14:40):
Skull, I guess that's nice. Yeah.
I mean, I would rather this thanthat, Yeah.
Yeah. So I don't know.
Yeah. Brain surgery itself is is
daunting. And there was a lot going
through my mind in terms of things that could go wrong.
Yeah. I mean, like it's relatively
safe, sort of, but it's, yeah, still.
(15:05):
Yeah. So there was, it was a lot of
anxiety for those two months, a lot of like overwhelming panic
at times. But somehow, like I, I worked
through it with a therapist and stuff.
And then somehow, I really don'tknow, the day of the surgery I
was like unnaturally calm. Like it was not like like nurses
(15:28):
were like commenting. They were like, you've never had
surgery before, like you're getting brain surgery and you're
this calm. I was like, yeah, don't ask.
I I don't know. You got all your your anxiety
wiggles out before. Yeah, I think that's it.
Like I had exhausted my body's capacity to panic.
So I was just like, it is what it is, yeah.
(15:51):
Wow. OK, so then you you go into
surgery. I'm assuming you're asleep.
This is maybe a dumb question, but you're.
Asleep. Thankfully yes, but not all
brain surgeries are so it's a valid question.
I know. That's why I'm asking.
You know, the like the crazy medical shows where they're
like, now play your guitar so weknow that you can still play
guitar. I'm like, think I'm like, what
did you have to do? Crochet.
Like what? No.
(16:12):
I actually talked to a guy recently who was a musician and
had to play guitar during his brain surgery.
Oh my gosh. Yeah.
I thought it was just in medicalshows.
OK, so you went to sleep. You it, it goes well, obviously,
'cause you're here. But like what?
(16:33):
What happened afterwards? Like what was that recovery
like? Like did you immediately?
Feel better? Well.
It was a lot smoother than I hadexpected for sure.
Like I like pretty much immediately.
Like there was very minimal pain, which they like.
It's not uncommon. They do say that there's like,
(16:53):
it's not a particularly painful procedure.
And part of that has to do with that the brain itself doesn't
have, like, pain receptors. Yeah.
Yeah. So that was good, I guess.
Yeah, Yeah. It wasn't too bad.
I I felt, I was surprised by howlike normal I felt, all things
(17:13):
considered, like just hours after.
To be honest, I'm a little jealous here.
I don't think I've ever had anyone come on the podcast and
be like, I had surgery, woke up,felt my like, felt my best, felt
fine, felt fine and dandy. Yeah, I don't know.
I was, yeah, it was much better than I was anticipating, 'cause
(17:34):
obviously I was anticipating theworst possible experience.
But yeah, OK, surprise. So six months out, you're
feeling good. Like, are you still experiencing
symptoms? I mean, I know it's congenital.
So it's like like. Yeah.
Like it's like surgery isn't a cure, but it does help like the
(17:59):
longer recovery process. Like, although the initial thing
was very smooth, it's like afterthree weeks that I, like I
didn't, I feel like I didn't have like my headaches were a
lot better for the first three weeks.
And part of that probably was that they, when they were in
there, they drained some of the fluid and then like it would
(18:20):
regenerate and stuff. But, and then I started having
headaches again and I kind of freaked out because that can be
a sign that the surgery has failed.
But they don't they don't tell you like how to tell the
difference between regular like symptoms and.
Like. Failure, which can be an
(18:40):
emergency. So it's stressful, but I found
like as I got back into school and stuff because I went back.
Three weeks. After.
Oh Dang. Yeah, in hindsight, I could have
waited another couple weeks, butthat was my surgeon's timeline
advice. Sure, but like he doesn't have
(19:02):
someone poking around in his brain.
No, as far as like my headaches as I was getting back into
normal activities were a lot worse.
And like I yeah, I wasn't I was convinced for a a bit like those
like third week to I don't know,8th week before I had my follow
(19:22):
up that like there was somethinggoing wrong, like it was re like
the hole that they made was closing up or whatever.
But I don't I don't know what. Some people just have a lot of
pain after maybe as their brain is like getting used to the
different pressure dynamics and stuff.
(19:44):
Also there can be like nerve pain from the that they cut into
your head and stuff. Sure, yeah.
And I, I mean, there was also, there was also like a small like
brain bleed after that they didn't tell me about because
(20:05):
because, well, because it. Nothing had to be done about it.
So they were like, well, let's just like not make her anxious.
Like it's small enough that it'snot gonna cause a like it'll
just reabsorb. But that can also cause like a
lot of pain as it's healing. So I like read my CT report
(20:26):
after and I was like that would have been nice to know.
What happened to informed consent?
Don't y'all have to tell me whathappened?
What? This is absurd.
Yeah, yeah. So like a few months after were
a lot of ups and downs and like headaches for a while were
actually worse than they were like before surgery.
(20:46):
But like at my follow up and stuff my surgeon said like it's
not it hasn't failed like it hasn't changed things as much as
we would hope. The fluid filled spaces are
still very large. They've only shrunk by like 2mm,
but that can happen when you've had it your whole life and your
(21:09):
brain has adapted to having it that way.
Sometimes they just, it just doesn't shrink.
And as long as the pressure is not too elevated, you can live
with that. Yeah.
So I just kind of went on with things.
And thankfully, just like the last month and 1/2 or so, things
have started to actually get better, much less intense
(21:32):
headaches, and my vision's gotten better too.
So I think there's lasting changes now.
And it's not unusual being in support groups and stuff that it
does take a few months for you to, you know, start to see those
improvements. So that's definitely reassuring.
Yeah. Yeah.
I'm glad at least it like kind of sort of worked.
I feel like I'd be so mad if I came out of that and I was like,
(21:53):
are you kidding me? I yes, I know like.
This is the. This is what.
This is what's supposed to help,and it didn't do nothing.
Yeah, yeah. Wowzers.
OK, so you had brain surgery foryour unidentified genetic brain
condition. There's still fluid in your
(22:16):
head? That sounds so weird.
So you're right, there is a flooding problem.
Yeah. Hilarious.
Still not funny. Ha ha.
Funny. Weird.
Yeah, I know. I, I like, like humor is so
important in dealing with these things, so I, I, I like it.
I like why I literally met you like an hour ago and I'm over
here laughing at your condition 'cause I'm like, I am so vividly
(22:38):
uncomfortable by the fact that you would have a like
essentially life threatening brain condition and they're just
like. Oopsie days.
As if it doesn't work. Like yeah, love it.
I think I'm more making fun of the doctors than I am your
condition, your condition's you're just you're trying your
best. Yes, yeah, yeah.
(23:00):
So now, like now that you kind of know what in tarnation's
going on with your body and yourhead, what are, what are you
doing now? Like how are you managing your
condition? I know you kind of mentioned
therapy and your support Group Acouple times.
So like what? What can you recommend to other
people who maybe are dealing with similar stuff?
(23:23):
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(23:46):
where we may talk about things that have to be cut from the
main apps. And did I mention?
That there's no ads. Not only do you get these very
cool things, but you can also support the pod because like I
said, you're listening for free.Give me a dollar and I will give
you lots of cool stuff in return.
(24:06):
That's my pitch, anyway. Yeah, so therapy has been a huge
thing. Like I've been in therapy for
years, like focusing on this specifically a lot this last
year, like in preparing for it and in coping after and mostly
(24:27):
in dealing with like the, the fears and the uncertainty
aspect. And that was like all through
the three years of waiting because it's, yeah, the like the
not knowing kind of is the worstpart for me at least.
So learning to like accept, not knowing and yeah, that
uncertainty has been really important in therapy.
(24:49):
And the support groups are really helpful.
There's many Facebook groups forhydrocephalus.
There's one specifically for this surgery, which was really
great to find because this isn'tthe most common surgery done for
hydrocephalus. The most common 1 is where they
place a shunt. So it's like a mechanical device
(25:15):
that like, yeah, mechanically drains the fluid from your
brain, usually to your abdomen, but it's a little bit more
invasive because there's actually something in there that
they, like, leave there. And for me, it was just that
they put a hole in the in the, yeah, the wall of the ventricle
so that there was an alternate pathway for it to drain.
(25:36):
So yeah, like usually in in manysupport groups, people are
mostly talking about shunts. So it was really good to find
this group that was specificallyfor this surgery.
And then, yeah, my, like, leaning on my support system
more generally. Like, my parents are great.
I'm very lucky to have them. Like they were at the hospital
(25:56):
with me. Both of them.
Yeah. And my sister, she's my best
friend. We laugh a lot about these
things, too. And that helps.
Yeah. So that's.
Yeah. Can I ask, so I know you kind of
said like the shunt is more invasive, which I mean,
obviously if this is your first brain surgery, I too would avoid
(26:18):
the more invasive one. Yeah.
But do you think that's something that like you would do
in the future? Like, is that something that you
thought about? So it's kind of complicated in
my case because of I don't even fully understand it like I've
done. I've read so many papers, I've
ask my doctor questions. It's still like kind of
(26:41):
understanding how different things work.
And but the shunt, so the procedure I had only works for
certain types of hydrocephalus and my type which is called
aqueductal stenosis, which is that congenital narrowing of the
CSF passageway that tends to be like one of the best candidates
(27:06):
for it and especially for adults.
So that was like my surgeon recommended this surgery.
And the problem with shunts, if you have had it for a long time
and your brain has adapted to the pressure is sometimes
sometimes like it will over drain very much.
(27:28):
And then that can cause like brain bleeds and bad stuff.
Like he told me, he told me whenwe were thinking like like when
I was still having symptoms and stuff eight weeks after the
surgery and there wasn't that much improvement, but he was
like, like, we're going to wait and see.
(27:48):
But like, I think it's, we're not going to do anything right
now because if. And he said he wanted to avoid
the shunt if at all possible because he's had another patient
that had a similar case to mine and said they did a shunt and
she had like a massive brain bleed and like has permanent
effects from it. So he's like, I'm not going to
(28:10):
do that if we don't absolutely need to.
Yeah, that's why. But yeah, it is.
I don't know. I guess that kind of is a scary
thought though, because it's notthat uncommon that the surgery
that I had fails at some point. And shunts do too.
Shunts fail a lot, but like, realistically this won't last my
(28:34):
whole life. And like, a second one of these
can be done, but only so many can be done before.
Like the scar tissue builds up and you can't do it anymore.
So at that point you would have no choice but to do a shunt.
And with the risks of that, that's, that's a bit daunting.
But yeah, it's just, yeah, there's a lot of like unknowns
(28:58):
because everyone is different. Like some people only it's, it's
unusual for someone to only haveone surgery in their lifetime
with this condition, but some people only have two maybe or
three. And some people have literally
like 300. I can't imagine.
I've like heard of people who are like 35 and they've had like
(29:21):
200 brain surgeries. So it could go either way
really. I've had 0 Thank you for
explaining that to me. I, I, I'm realizing that as you
were answering the question, I'mlike, oh, that was like a really
deep and probably invasive question to be like, so how do
(29:44):
you think the rest of your life is going to go with a lifelong
brain condition? But.
No, that's what I'm here for. I, I feel like I'm learning a
lot and that makes a ton of sense 'cause you're right, your
brain is kind of used to having like this level of pressure.
I'm sure it's not the right pressure, but if you get a shunt
and all the pressure drains, your brain is like not having a
(30:07):
good time. Exactly, Yeah.
Wow. OK, OK.
Wow I mean I interview a lot of people but I don't know why but
like talking about someone's brain or like heart is always so
scary 'cause it's like you'll only get one.
Is that? Yes, Exactly.
(30:27):
Yeah. I mean, I guess with the heart
you could get a heart transplant, but like, you know
what? I mean, I guess you can't get a
Yeah, unfortunately, brain transplants are not.
No. They're not, which is.
OK, sorry. My brain is like I yeah, but
that'd be so interesting. Sorry.
OK. I'm like, oh, how would that
work? I'm sure they've tried.
(30:50):
I really appreciate the way thatyou kind of gave your your tools
that you're using. And a lot of them are abstract
in the sense where it's like therapy, a support group lean on
people when so when we're talking about like physical
tools or like tips and tricks, like when you're having your
headaches, like what do you do? Like how are you handling that?
(31:14):
I have this really funny lookingit's for designed for migraines
I think, but it's like a hat type thing that has ice in it
that's been really helpful. Do you have 1 you?
Yeah, I have a migraine. Hat like sunglasses because
light sensitivity sometimes, which I never like my headaches
(31:36):
were never, never had light sensitivity before the surgery
and then after they did, which is kind of weird but yeah.
So that is all. Another thing like Tylenol.
Yeah. Like like brain, brain rest kind
of thing, like laying in a dark room, like kind of like when you
(31:59):
have a concussion, like how theytell you to lay in a dark room
and not look at screens or anything.
I found that if I'm having a lotof headaches, that is helpful,
but it's also not that practicalwhen you're in school and have
things to do. Right.
That makes sense. And I mean, you're going for
your master's. You went back to school three
(32:20):
weeks after your surgery. So yeah, I'm getting that maybe
that that may be hard to just not do nothing.
That's very smart though, to just like, take brain breaks.
Yeah, I feel like. Even if you don't have a scary
brain condition, brain breaks are good.
Yes, for sure. OK, those are, those are some
(32:41):
good options. Sorry.
I just, I always like to see like kind of what physical stuff
people are using 'cause it's always so fun to see the
crossover, you know, like you use a migraine cap, Are they
technically migraines? No, but also like it works.
Maybe someone hasn't tried it yet.
Yeah. Well, besides all these like,
(33:04):
tools and things that you're using, which I also just like,
really love the support group thing because like you said,
it's such like a wide array of people that have this condition.
What, like what else do you wantto leave the listeners with
before maybe we wrap up the app?So maybe a few things that I've
learned along this journey and then a little little PSA on
(33:27):
signs to look out for because itwas it was missed in my
childhood and there were in hindsight some signs that.
So. OK, yeah.
So things that I've learned for sure, the importance of self
advocacy, of listening to your body and trusting your gut,
'cause I think if I would have just taken that first
(33:49):
neurosurgeon at his word, I might be in a very different
place right now, you know? So that's very important.
Also, for me, it's this experience has really boosted my
confidence that I can handle hard things because it was
something that I really didn't think.
Like, it was kind of like my worst nightmare in a way.
(34:10):
Like, I don't know, it's so weird When I was a kid, like, my
worst fear was like getting surgery.
I don't know why. It was just.
Yeah. And.
Fair. And this is a funny thing.
Like I figured out when I was a kid that I probably had OCD from
like a weird personality test, which I do.
(34:34):
I was later diagnosed but and then I was like I don't know
what this is. Wait, does it require surgery?
Look up. Does OCD require brain surgery?
It said no and then I was like OK, I'm good then disregard.
Not you having OCD about needingsurgery for OCD.
And then I ended up having brainsurgery.
(34:56):
But. And I got through it, which is,
yeah. And I think like a lot of us
underestimate like what we're able to get through when we need
to and like how resilient we are.
So yeah, I think it's important to believe in your strength.
(35:18):
The, I've also learned very muchthe, the power of community in
the support groups and in my since starting my Instagram
page, just the wonderful people I've met and the connections
I've made. Yeah, very great.
And then probably the most like impactful thing that I've gained
and mostly through therapy is, which has been very difficult
(35:42):
for me because I am a control freak, like letting go of the
need for control and certainty in our lives because this like
brain, like surgery, brain surgery, all of it.
There's so much uncertainty and you like, you have no control
once you go in the operating room.
It's just like you. It's a huge leap of faith.
(36:03):
And I was, I was so uncomfortable with that and so
like terrified by it. But yeah, I kind of learned that
like, you have to really focus on the things that you can
control and then let those things go that you can't because
otherwise you're just stuck and you can't move forward.
And it just makes it harder on you and you're going to have to
(36:25):
deal with it anyway. So yeah, that like acceptance of
uncertainty has been really a big thing.
It's a good one. Yeah, yeah.
And then PSA for the signs to look out for.
So the thing for me was I didn'thave any symptoms really, but a
(36:49):
major thing in infants with hydrocephalus is very large
heads and or like very rapidly growing because it's trying to
like make space for all the fluid and stuff.
And when the the fontanel hasn'tclosed yet, like it can expand.
(37:12):
And that's actually why probablythat I was able to not have
major problems from it because it was like before, before that
had closed. And then, yeah, I don't know,
there's other things too 'cause some people their head gets big,
but they still have problems. But yeah, so the IT was pretty
obvious too. Like at birth my head was at the
(37:36):
5th percentile, so small. And then by a year it was like
the 98th and then it was like 99.8 at like 15 months.
And it's so like I did have it measured at the doctor every
time. And my mom still has the little
papers that they gave her with the measurements, but they never
(37:57):
said anything about it being even it being like a bit large.
But oh, it's OK. Like they didn't say anything,
which is is strange. And it's very obvious looking
back at baby photos. Like I showed other people and
they're like, how did how did noone need to look in there?
(38:17):
Wow, yeah, out of no one thing to look in there.
That's funny. So that's a big thing for like
parents, if your baby has an abnormally large head, maybe he
has to talk to her about it. For me, there was some like mild
motor delays, but it wasn't likeextreme enough that it was
(38:40):
concerning. It was kind of like borderline
and then if the eyes are a little bit weird, misaligned or
whatever, like I've always had alittle bit of a, one of my eyes
is not quite aligned with the other.
Like it drifts outwards and it got it that actually, I didn't
mention that, but it got a lot worse over these last few years
(39:02):
where it was actually like partially paralyzed and would
not like that's gotten better since the surgery, which is
reassuring. Oh.
Good, something worked. Yeah.
And then other signs to look outfor would be headaches,
obviously in a baby, like a bulging soft spot, fontanelle,
vomiting, lethargy, seizures, sunsetting eyes, which is like
(39:25):
when the eyes are fixed in a downward gaze and developmental
delays. That's that's my PSA for Yeah,
be aware. No, that's, that's good.
I appreciate you doing that 'cause I do have quite a few
parents who listen, I mean, I know most first time parents are
(39:47):
already like, oh God, there's got to be something wrong.
I need to make sure that the baby is fine and everything is
good. But it's also like if you're
literally just looking for like,hey, is my baby's head big And
like, are their eyes moving correctly?
Like we're good. Like these are big signs to look
out for and also for like. Adults they can be like Oh my
(40:09):
gosh I also am experiencing XYZIcan bring this to my doctor and
be like hey hydrocephalus yes nothank you Oh my goodness your
story is like insane and you told it so well and you you
brought so much information and like research we love I'm.
(40:31):
Glad. So you did kind of mention your
Instagram page if the listeners?Enjoyed hearing your story and.
Perhaps want to connect or hear more?
Where can they find you? It is at my dot badass dot brain
on Instagram. Yeah, the cutest name.
(40:53):
Thank you and I love it. It's like your profile picture
right now is like a picture of your MRI, right?
It is, yeah. Which is so fun.
I like, I kind of thought it waslike a band logo or something
when I think you first followed me and I was like weird.
And then I clicked on it and I was like, Oh my God, it's a
brain. So I mean, that is pretty
badass. Thank you.
(41:16):
Well. Kai, thank you so much for being
on the podcast. I genuinely had so much fun
talking to you. If you're open to it I would
love to do like a 10 minute bonus episode with.
You and kind of. Get to know you a little more.
Thank you so much for having me.Oh, of course.
(41:36):
Girl, this is so fun. OK, listener, that is all we
have for you today. Otherwise, I'm Clark, this is
Kai, and this has been chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(41:57):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(42:22):
Disclaimer, this is a conversational podcast and while
we make sure our diagnosis journey, symptoms and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
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