TRIVEDA HARRIS TALKING ABOUT Chiari malformation

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Episode Transcript

Speaker 1 (00:05):
Good evening and welcome to Believe in the Journey podcast
where I am your host, Trevita Harris, and tonight I'm
going to be talking to you about understanding Kari malformation.
September is Kari Malformation Awareness Month, and I just wanted
to bring awareness to this condition, not only because it

(00:26):
is one that I deal with, but it is because
it is rare and not a lot of people have
heard of it, and it is often misdiagnosed with other conditions.
But before we do anything, we have to go to
God in prayer. Dear Heavenly Father, thank you for bringing
me here in front of each and every person that
is a listening ear tonight. Let the words of my

(00:48):
mouth fall upon the ears that need to hear, and
let them have a good understanding of what Kari malformation is.
And if they do not understand, I am always available
to answer the questions to the knowledge that I have.
I thank you for allowing me the opportunity and to
be a voice to those who are battling with this

(01:09):
condition that there is no cure for. But you are
a healer of all things, and you keep us focused
on what it is that we need to do. As
we deal with this condition that is not an easy
condition to deal with. But I thank you for this
opportunity to be in front of those who are willing
to listen to my journey and the information that I

(01:29):
have to share about Krii malformation and your precious and
holy name Jesus. I pray Amen. Well, as I said,
I wanted to talk to you guys about QRII malformation
and what Rii malformation is. It is a serious neurological
condition that affects the shape of the brain. And basically
when people say my brain is too big, that's basically

(01:53):
what they're saying is because the base of the brain
is coming out at the base of the spinal cord,
so it's basically at the brainstem. And there are four
types of ki malformation. Type one is the most common
and it is basically where the harniation of the cereial

(02:13):
tonsils fall into the spinal cord. People who have a
harniation of five point five milli centimeters or however you
say that millimeters, they may not experience any symptoms at all,
but there are some like myself who do experience some symptoms.

(02:34):
It can cause extreme headaches, nick pain, balance problems, difficulties, swallowing,
vision disturbances, balance issues, and the list goes on. Type
two is associated with spinal biffita. It's a birth defect
that is an opening at the spinal cord that did
not close during the gestational period. It's also the harniation

(02:59):
of the cerebral brain stem the fourth ventricle into the
spinal cord, and it can cause serious neurological problems such
as paralysis, breathing difficulties, hydrocephalus, which is basically like fluid
on the brains. Type three is the rear and it
is a severe It is the harniation of the cerebellum

(03:23):
and the brain stem, where there is an opening at
the base of the brain where it allows the brain
to come down and sit on the top of the
spinal cord. This can be life that threatening and cause
complications such as seizures and brain damage. That is type three.

(03:45):
Type four is the least common, but it is also
the most severe. It is the undeveloped or the absence
of the cerebellum and often fatal in the early infancy stages.
So usually if a person our baby is born kind

(04:05):
of they may make it through the delivery stage, but
not usually. So those are the different types of QR malformation.
The harniation that a person may have does not signify
whether or not they're going to be symptomatic or not.

(04:26):
It just is a condition that affects each and every
person differently, and you never know what you're gonna deal
with when you are dealing with KI malformation. Like I
said before, KI does not have a cure. There is
no cure for KR malformation. There is a decompression brain

(04:48):
surgery that is offered to patients who deal with KI,
and basically what that does is it helps to slow
down the progression of the condition and and it doesn't
It can sometimes alleviate some of the symptoms that a
person may be experiencing, but it is better for a

(05:09):
patient who is under the age of twenty five to
have a better outcome due to some of the research
that I've done is that if you are over the
age of twenty five, the complications may be a little
bit more in depth for you. So you always want
to make sure that you get more than one opinion

(05:32):
and outweigh the options and what the outcome may be.
Because some people who have had that surgery that I
know personally have not been able to do the things
that they once were able to do before they had
the surgery, and it is a long recovery period for

(05:52):
some people. After having that surgery, you do run the
risk of losing your vision, having other complications like developing
Parkinson's disease and things of that nature. So whenever you
are considering bearing brain surgery and any capacity, understand that

(06:14):
the risks are are there, so never take it lightly.
Some of the symptoms some of the other symptoms that
you can have with KRII my information is nosebleeds, slurred speech,
occasional swelling, hyper and hypotension, a horse voice, abdominal pain,
shortness of breath, facial numbness, paputations, tachycardia, blackouts, ear pain,

(06:39):
brain FuG phototopia, tingling in the limbs. It's a lot
of different symptoms, and I will be honest with you guys,
some of these symptoms that I have experienced and now
that I'm going through minimfaus, they are in the same list.
So I can't necessarily tell what is a kar symptom

(07:04):
or what is the symptom of menopause. So's it's very,
very crazy when you are already dealing with these symptoms.
The reason I wanted to talk about ki my information
not only is it because I deal with this, but
it is a rare condition and most people don't get diagnosed.

(07:26):
For years, I was misdiagnosed from a child to I
was thirty, and I ended up having a stroke, which
led to my actual correct diagnosis. Because I suffered as
a little girl with nose bleeds all the time. It
was issues because they would think that I was getting

(07:46):
overheated because I did have issues with regulating my body temperature,
which would sometimes lead to nose bleeds. It would be
ringing in the ears, the nos and tingling in my
hands and feet, and that didn't start. The numbness and
tingling did not start until I was about nineteen years old,

(08:08):
and so no one had any idea of what was
causing it. They were just saying that the headaches that
I was having the nose bleeds were just migrains and
I was just too hot and was just having the
nose bleeds and the heart paputations. I was having those

(08:29):
a lot. I was at a doctor's appointment my yearly checkup,
and the doctor you know, when they go to listen
to your heart, you know, you gotta breathe and do
all that stuff. And so I was doing that and
the doctor stopped and she was like, are you okay, Yes, ma'am,
I'm fine. Are you okay? She's like, yeah, but are

(08:50):
you okay? I said, yes, ma'am, I'm fine. What's wrong?
She was like, your heart rate just sped up? Are
you sure you're okay? I said, yes, ma'am, I'm fine.
And this happens all the time, I said, it happens
sometimes when I'm laying in the bed and I'm not
doing anything. I'm not stressed, not worried about anything. But
this has been happening since I was a little girl.

(09:11):
So I'm not sure why you're so afraid right now.
But this is normal for me. But no one ever
put two and two together until after having my stroke.
The reason that KRII information awareness is so important is

(09:32):
because people are oftentimes misdiagnosed, and being misdiagnosed means that
you hinder being able to get the necessary treatments and
medications that may help to alleviate some of the symptoms
that you may be dealing with. It affects your jobs,

(09:52):
it affects your relationship. It also plays a major role
on your mental health. And a lot of people don't
necessarily think about that or talk about that in the
sense of Kyr, but it does affect your mental health
because you're not the same person anymore. You went from
being able to drive, to being able to cook, to

(10:14):
being able to stand, to do all of those things,
and then now you are falling. You are having these excruciating,
debilitating headaches and things of that nature, hamings patries. You're
dealing with so much at once that you don't even
know what to make of it. You're having the balance issues,

(10:39):
you're having issues with your vision, you're having difficulties swallowing,
You're having all of these different things that are happening.
You never know how you're going to deal with the
symptom as they come, because you could go with just
having the horrible headaches, and then the next day you're

(11:00):
dealing with another symptom like shortness of breath, or you're
having another symptom, which is the numbness in tinkling in
your hands. One of the medications that they usually prescribe
is that anti seizure medication named Topomax, and with that medication,
one of the side effects for that is numbness and
tinkling in the hands. Well, if you're already experiencing that,

(11:23):
you're not going to know how to explain it, if
you're not going to recognize it as being a new
symptom for taking the medication, or if it's just one
of the symptoms that you're already dealing with. And that
was one of my issues with taking that medication is
that I had the numbness and tingling in my hands,

(11:46):
but I was already having it, but it did intensify
it to where I had to, you know, eventually get
off of that medication. The other thing is you learn
to pay more attention to your body and the signals
that it gives you. Also, the weather plays a major
part in how you're going to deal with these symptoms

(12:07):
as they come. You don't always think about that, but
it does play a major part. So if it's about
to rain, you're gonna feel that. You know, the old
folks say that if you have knee pain, joint pain,
or anything like that, you can tell when the rain
is coming. The other thing is with dealing with kiari

(12:28):
you get a lot of pressure built up in the
head when the temperature is changing. For me, when it's
really really cold or it's really really hot, it affects
me in that way, and I can always tell when
a storm is coming because I'm usually stuck in the
bed and this week I have literally with the weather

(12:50):
changing and it being cooler in the mornings. In the mornings,
it is hard for me because my head is hurting,
so I'm usually with the heating pad or an ice
pack on the back of my head. The headaches that
I have are usually very difficult to deal with because

(13:13):
it's not just a headache. It's a burning sensation at
the back of my head down my neck to my shoulders,
and it hurts. It's very painful. I do not wish
this on my worst enemy. It is not one of
those conditions that you would want someone else to have
to deal with. Excuse me. Being able to share the

(13:40):
awareness and the information that I have with this condition
is one that I want people to know that it's
an invisible condition. Yes I look like I am fine,
like there's no issues, that I don't have any problems
or anything like that, but I deal with this condition
and I've been able to make it look like I'm okay,

(14:02):
even though most days I am in pain because I
have a headache. I don't know what it feels like
to not have a headache, and I feel like the
day that my head does not hurt, then there's something
seriously wrong because I do not know what that feels like.
I do not know what a pain free head feels like,

(14:24):
if that makes any sense. So those of you who
have never had a headache, thank God for that, because
it is not fun at all. And I do deal
with my grains. And there is a difference for me
with knowing the difference between the two, because a migrain
is usually gonna be just on one side and it's

(14:46):
over one eye. It could be in the center where
it affects my vision, but kari also affects a vision,
So if it's on just one side of my head,
I know that it's just a migraine. If it's both,
and there are days where I do deal with having

(15:06):
both a k headache and a migraine, and those are
the days where my eyes, my eyes hurt, my eyelashes hurt,
my hair hurts, my head it hurts to move it
hurts to breathe, It hurts to do anything. Any movement hurts,
and just trying to lay as still as possible is

(15:30):
not always easy to do. But that's what I have
to do to try to, you know, not cause myself
any pain. Now, I love to laugh. I love to
be silly, but coughing and sneezing and laughing creates a
lot of pressure and pain in the back of my head.
But I love to laugh, So I will not give

(15:52):
Kari the satisfaction of taking away my joy to laugh
and to enjoy life as God has allowed me to do. So.
As I said before, Ki malformation has no cure, there
are some medications that you can take to help alleviate

(16:12):
some of the symptoms that you may be having. The
abdominal pain, the knowledge of the apputations, the tachycardia, which
is basically a fast heartbeat, and that can be life
threatening if it's not checked. But if you're dealing with
Kri malformation, it's going to be a difficult road to

(16:37):
figure out what medications can help manage that. So being
a advocate for yourself is very, very important when you
finally get a correct diagnosis, So make sure that you're
advocating for yourself when your body does not feel right
and something does not feel right, so you make sure
that you are advocating for yourself and don't just take

(17:00):
any medications that the doctor prescribes in the hopes of
saying that this is going to be a cure all
because number one, I have met a few brain surgeons
neurosurgeons who have just been adamant on saying that they
are the best at what they do, and I'm not
saying that they are not. However, you can't in the

(17:21):
same breath say to me that KRII is not the
cause of the symptoms that I'm dealing with, but at
the same time tell me that kari is the cause.
So it's like either it is or it isn't. Yes,
I have KORI, but it is not the cause of
these other symptoms. When we all know that the brain

(17:43):
is the central avenue for what your body is able
to do, because the brain has to sit the signals
to the body so that you're able to do what
is necessary to make your body move, and so not
just allowing them to say, hey, yeah, I'm the best
and I'm gonna, you know, operate on your brain and

(18:05):
take a piece of it out so that your brain
will have more space. Take a piece of the skull
so that your brain will have more space to have
this CSF fluid flow, so that there aren't any backups
or anything like that. A lot of crazy symptoms. It
is a little trick that I've learned over the years.

(18:29):
And it may be a little gross, but sometimes I
have not necessarily random nose bleaves. That's a different story.
But if I am holding my head down, this not
allergy season, is not cold and flu season, any of that.
But if my nose just starts to run, that is
an indication of spinal fluid. And so taking a brown

(18:52):
paper bag and if it dries clear, I'm okay. If
there's anything other than that it's a different color, then
there's an infection somewhere and I need to get to
the doctor. So learning how to cope with KR has
not been an easy thing for me. However, it has
been a journey, and to say the least, because when

(19:15):
I first found out I had Krii maulformation, it was
life changing number one, because I had a stroke. Having
the stroke is what led to me finding out that
I had Krii maunlformation. So I say that my stroke
was a gift and a curse at the same time,
because I was able to find out why I was

(19:36):
having these debilitating headaches, why I was having the numbness
and the tingling, why I was dealing with the palputations,
why I was dealing with so many of these things
that no one could ever put two and two together
to give a true diagnosis until I had the stroke.
It is not easy at all dealing with an invisible

(20:03):
illness because people will always say, well, you don't look sick.
I try to be polite when people say that is no,
I don't look sick, but they don't look stupid or
crazy either. But it is what it is. People are
going to say things that don't make any sense at all,

(20:24):
But no, I don't look like what I've been through,
and that's by God's grace and his mercy, he has
kept me covered each and every time I've had to
deal with this condition. I'm going to give you a
little backstory about how this diagnosis, even though you heard
me mention it a few moments ago, is that I
had a stroke. However, the stroke I was hard headed

(20:47):
in the sense I did not believe that I was
having a stroke, and so I drove myself to the hospital.
Once getting there, of course, the doctors were fussing about
me actually driving myself there. By the time I got there,
I could not feel my whole entire left side. I
never had any issues with my speech or anything of

(21:09):
that nature, and it was a hard thing to deal
with as far as being told that I had a stroke.
I have three small children at the time, they were thirteen, eleven,
and seven, and so having three kids to take care

(21:31):
of it was a difficult thing. But I prayed and
asked God to keep me covered because I have opted
not to do the decompression of brain surgery simply because
I don't feel that it is right for me at
this time. As long as God is keeping me covered,

(21:54):
I am going to continue to rock with his diagnosis
and his instructions for me. In twenty thirteen, I had
a major flare up with Kari and I ended up
losing my ability to speak and I lost the use
of my left side again, so it was difficult. And

(22:19):
then during that time I was diagnosed with a condition
called eppalasia partialist continuum, and basically it's a condition that
is localized seizures to one part of the body, and
it could usually last for a couple of days, a
couple of months, and even years, and for me it
has been years. I have learned different ways to cope

(22:41):
with not only Kari, but with Appalachia Partialist Continuum. I've
learned different ways and how to pay attention to my
body when it's given me signals to rest. Now, I
will be honest, there are days where I'm still extremely
stubborn and I don't want to sick and I don't
want to be confined to the bed. So I'm still

(23:06):
hard headed and struggle with that. But I am learning
and I'm getting a whole lot better. As a matter
of fact, this morning, I was still in my bed
at nine o'clock and my son, my youngest Nathan, was like, well,
it's good to see that you are actually in the

(23:27):
bed and you are resting. You're not up doing anything
that I don't think you should be doing. But of course,
my children have been my biggest support system through this
whole entire journey, and having a good support system whenever
you're dealing with anything that is health related does help
with the outcome of whether or not it's going to

(23:49):
be a good journey or a bad journey. So make
sure that you have a good support system around you
because KIARI is life changing. It is life altering having
the decompression surgery, and if you don't have someone that's
there to help you maneuver through your recovery stage, you

(24:11):
could have some laps, or you could, you know, just
not do too well with the surgery overall. But understand
that when you do take that risk to go under
the knife, that you may not be that same version
of yourself before you had the surgery. But after being
diagnosed with tr you're never what normal is considered anymore,

(24:36):
because I don't necessarily know what normal is for anyone
outside of myself, because this is a new normal, and
every day is a different symptom that I'm going to
have to encounter, because I never know from day to
day what I'm going to have to deal with and

(24:57):
what I'm going to have to face when dealing with
with KYR because it could be tomorrow I have a
speech issue, or I could have some abdominal pain, or
I could be dealing with Dizzey spells or just whatever,
and they are random they come, and they go, and

(25:19):
they do whatever they want to, and each and every
patient is going to deal with something different when dealing
with KR and my information, so there is never one
patient that is the same as the next one. You
can know five different people who have KEYR, and out

(25:40):
of those five, they each are going to tell you
something different. Some may not even have a headache, Some
may not have ever experienced balance issues or issues with
vowels or anything of that nature. Never dealt with any
numbness or tingling. But yet they have dealt with the
heart path you take. They've dealt with the shortness of breath,

(26:02):
They've dealt with the vision disturbances, They've dealt with the
ringing in the ears. So you just never know what
symptom you're gonna get. And that's just like the forest
gumps in life is like a box of chocolates. Well,
KR malformation is too. If you want to support someone
who is dealing with Kori malformation, there are several support groups.

(26:26):
Conquer Kari is one of my favorites, and Kris Support
dot org is another one that I like, And of
course there's many Facebook groups, TikTok, Instagram. So if you
have any additional questions. If there's something that I did
not cover that you don't understand about kri my malformation, please

(26:50):
you know, reach out and if I can help, and
if I don't have the answers, and if I know
someone that I can direct you to, I definitely will
do that. I'm going to share a video that I
made about KR malformation on my personal page and also
in my podcast group. Lord, I just went completely blank.

(27:19):
It's about eight minutes long. So whatever I did not
cover here, just go and watch that video. But I
thank you guys for tuning in tonight. My voice is
starting to go, so I'm going to get off of here,
but I thank you for tuning in and taking the
opportunity to learn a little bit more about KR malformation.
The color for Kori is purple, which is why I'm

(27:41):
wearing purple tonight. But love on somebody that has keeping
and as I remember to stay out of God's business,
the only thing that he needs you to do is
be obedient to what He's called you to do. Until
next time. I see you guys later. Good Night.