Latest / DA CREW Podcast / __BONUS SHOW___ DA CREW PODCAST SEASON 1_ HOST TRIVEDA HARRIS

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__BONUS SHOW___ DA CREW PODCAST SEASON 1_ HOST TRIVEDA HARRIS · DA CREW Podcast

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Oh no, it wasn't Sweet Sweet Squeeze good even well to believe in
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the Journey podcast where I am your host, Travida Harris, And this is
2:53
a very special episode and honor of well not necessarily honor, but to ring
3:00
awareness of Kiari malformation, which is a serious neurological condition that I actually deal
3:05
with. And I have a guest tonight, Miss Anna nors Short, who
3:08
will be talking about her experience with this condition. It is a very very
3:15
rare condition and it is basically like one and out of every one thousand person
3:23
is diagnosed with this condition. So we're gonna talk about that and I'm gonna
3:28
try to be as not use so much medical jargon, but in very simple,
3:38
easy terms to understand. But before we do anything, we always have
3:44
to go to God in prayer first, and after that, I'm gonna bring
3:47
up my guest and then we'll talk about what Kiari malformation is in the different
3:53
types of that. Let us go to God in prayer. Dear Heavenly Father,
3:57
thank you for bringing us together tonight as I share information about my journey
4:01
with Kiari malformation. It is a daily battle that you give me the strength
4:05
to fight every single day. Help me to give the information that is necessary
4:12
and to help those who have never heard of this condition actually be able to
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help those who are newly diagnosed and who may just not even know that they
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may even be dealing with symptoms that are related to this condition. In your
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precious name, Jesus, I pray Amen. All right, I'm gonna start
4:39
by talking about the four different types of Kiari malformation, and you can bring
4:45
up my guests, miss Anna and or Short as well. That way we
4:50
can talk to her as well. Welcome, Hello, how are you.
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I'm doing well? How are you? I am doing good. I'm gonna
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go through just a brief introduction of what the different types of KR malformation is.
5:10
I'm not sure if you're aware of the different types are anything of that,
5:14
but there are four different types of KR malformation type one and two.
5:18
They're very, very similar and the type of symptoms that each person deals with.
5:26
Type three and four are the most severe and the very rarest. Four
5:30
being the most rare and most severe because it's developed through an infancy and most
5:35
infants don't make it past that step three. Type three basically is severe and
5:45
it's basically where the portion of the cerebellum is into the spinal cord and it
5:51
extends through the opening at the base of the brain, which causes a lot
5:57
of neurological issues and just a lot of pain, so to speak. And
6:06
type two and one and two are pretty much related to severe headaches, numbness,
6:15
tingling in the hands and feet, dizziness, difficulty with swallowing, choking
6:21
and gagging issues, speech problems, harshness, ringing in the ears, and
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the list goes on and it affects everyone differently. Also, there is a
6:31
decompression surgery that is I guess you could say a symptom reliever in certain cases
6:43
where it is a surgery that you go in and the surgeon basically cuts a
6:49
hole at the base of the brain to allow for bigger space for the brain.
6:55
I use the term of basically, my brain is falling out, so
7:01
you need to create bigger space. I want to talk to you about your
7:09
experience with Kiar malformation and you've had the decompression surgery. What was that like?
7:18
So I'll tell kind of my whole journey with Kiri. But for me,
7:24
the surgery was successful, and I would say compared to how I was
7:30
feeling pre surgery. So my surgery was actually twenty years ago. Okay,
7:34
so this as of August first was August first, two thousand and three.
7:41
And I am someone who's always had headaches since my teenage years, always had
7:46
my grains, always had the same type of my brain. Was always on
7:49
the left side of my head, and you know, my grains can be
7:53
quite debilitating. So I knew what to expect when I had a migraine.
7:59
And then it was one day in December of two thousand and one, I
8:03
got a headache and it was on the right side of my head, which
8:05
was unusual. That was the first sign that something was different because my headaches
8:09
are never on the left side, never on the right side of my head.
8:11
And I also had pain in my ear, which was different. And
8:18
I never wear my glasses, but that day, like I just couldn't tolerate
8:20
my contacts, so I wore my glasses. That day. I had a
8:24
baby shower to go too. I went to that. I came back headache
8:26
still there. And so headache is continuing for some time. Neurology, you
8:35
know, they give me different type of my grain medicines, which isn't helping
8:37
because they the same medae ye, so give me medicines. It's not working.
8:46
And then he my neurologist at the time, decided he wanted to do
8:50
an ultrasound of my Karti arteries just as the baseline yep. And when that
8:56
came back, he felt like the blood and my Karada arteries was faster than
9:01
it should be. He wasn't sure if that was something to be concerned of
9:05
because at the time, I was twenty five years old, and you know,
9:09
he was like, it could just be that you're younger than what the
9:13
medical textbooks are based off of. You could be so he wanted to do
9:16
an MRI and an MRA as just a baseline. And so at this point,
9:22
it's now December of two thousand and two, because a whole year later
9:26
and I still have the same headache I had one. And so I also
9:35
at the same time, I had just changed jobs as well. I just
9:37
got a new job. So I was in the period of time where you
9:41
don't have insurance, like the six where you don't have insurance. I had
9:45
insurance when I got the MRI done, but I didn't have insurance by time
9:48
he communicate the results. Yeah, so he wouldn't see me in his office
9:52
to give me the results, which was the first so he sent me a
9:56
letter. He sent me a letter in the mail telling me that I had
10:01
that the you know, karat Artis were fine them, Rob was general fine,
10:05
and he was like, there's an incidental finding of a KR a maunformation.
10:09
And I was like, what's that right? So I went on,
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this is two thousand and two, so I don't know if we had Google
10:16
then, so what it probably MSN was probably all we had, so you
10:20
know, whatever Internet we had back in two thousand and two, and started
10:26
looking up kr in malformation and I'm seeing and again I'm twenty at this point.
10:30
I'm not even twenty five yet this point, Yeah I am. I'm
10:33
twenty five. So I'm twenty five, like I'm very young, not had
10:37
any health problems, and all I'm seeing is brain surgery and all this stuff.
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So I'm freaking out. And he won't he won't talk to me on
10:48
the phone because I don't have insurance, which was crazy to me as a
10:52
health care for about it now. And so at this point I'm just kind
10:56
of on my own trying to figure out what this means. All I know
11:01
is somebody's telling me I need brain surgery. That's all I know. Yeah,
11:07
And so I started my new job and I'm constantly thinking about, like
11:13
I can't get out of my head that I have this letter that tells me
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I have something wrong with my brain. It's a birthdayference. Yeah, freaking
11:20
out. So I happened to talk to the social worker who was working who
11:24
was covering neurology at the time. I'm a I'm a healthcare social worker.
11:28
So at the hop I was working at, I talked to the social worker
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who was covering neurology, and I was like, look, I got this
11:33
thing. I don't know what it is. Is there a doctor that can
11:37
just tell me what this is? They can just in the hallway by the
11:41
elevator. If you tell me right down here, I'll come down here.
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If they can just tell me, I'm not gonna die, that's all I
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want to know. That's it. And she was like, I know exactly
11:50
who you need to see. So she talked to one of her neurosurgeon friends
11:54
and he agreed to see me in his practice before I had insurance, as
11:56
I think for her, I didn't have to waiting. So it's still been
12:01
like two months at this point. But then it's like February of two thousand
12:05
and three again, I still have the same headache from December two thousand and
12:09
one. It never stopped right. So I went in to see him.
12:13
He looked, you know, did another MRA looked at the MRA, and
12:16
he my surgeon had a very dry sense of humor. Most of them probably
12:24
take some of the stuff he says the wrong way at times, but he
12:28
was just very matter of fact and he was like, yeah, you have
12:31
a KR in my information, here's what we can do about it. I
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didn't have any hydrocephilist, which is, which was a blessing. Right.
12:37
My herniation at the time was very little, only a few centimeters, but
12:43
he showed it to me on the scans. My mom was with me,
12:46
and he was like, here's your options. You can we can do surgery,
12:50
you can do decompression surgery, or you can wait. And he was
12:56
like, if you wait, most likely your symptoms will get worse. Herniation
13:00
will continue to you know, your brain will continue to go into your spinal
13:05
column. It'll still fall. Right. He was like, you know,
13:09
here's what you can do. So of course I'm scared because surgery. So
13:13
he connected me with a couple of his patients who had had surgery, some
13:16
who would he let me talk to, some who had had a good experience,
13:18
and some who had not had a good experience. So I make decision
13:24
and at the time, you know, and no kids, twenty five,
13:28
I recommend you, if you're gonna do it, do it now starts happening.
13:33
We decided to do it. We meaning me and my mom, decided
13:37
to do it. And again, because I just started my new job,
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I knew I wouldn't have short term disability and if PTO, so I intentionally
13:46
waited eight more months so that I could save PTO time to be out of
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take that. Yeah, and you know, without any break in my pay
13:56
because I still had so Exactly August of two thousand and three, I had
14:03
surgery. So now it's been twenty four months since my symptoms started, and
14:09
by the time I got to surgery, I had progressed from the same headache
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to entire left side numbness. And when I'm telling people that, it's not
14:18
like it wasn't that I didn't have any feeling kind of numbness. It's the
14:22
kind of numbness like when your arm falls asleep. Yeah, the tingly feeling.
14:26
I had that down my entire left side. I was walking with a
14:28
limp, I was having trouble swallowing, my speech was slurring at times,
14:35
the kind of choking, gagging feeling that you described, and just extreme fatigue.
14:41
Yes, like if I had one thing to do that day, that
14:45
was all I was gonna do. And I still worked all this time because
14:48
I couldn't be out because I was trying to sing. Time to be out.
14:52
But if I went to church and had to sing in church, singing
14:56
completely wiped me. Any type of social activities were libery because yeah, it's
15:03
like that's it. I'm in the bed and I'm out. Yeah. So
15:07
I did have the surgery. I stayed in the hospital for three days and
15:13
did not have any complications during, during, or after, thank thank god.
15:18
Yeah, and pretty much had immediate relief of my symptoms and have only
15:24
had maybe one scare maybe, like in the first two years, I started
15:31
having enoughness again. And then when I was in labor with my daughter,
15:35
we thought how some stuff was going on because yeah, yeah, so we
15:43
thought we woul't have to do an emergency C section and all that stuff,
15:45
but they called neurosurgery and called it wasn't much they could do because it had
15:50
been she was born in two thousand and seven. So it's you know,
15:56
it's been four years since I had had surgery, and I just I chose
16:00
to just deal with the pain and push through instead of going to C section
16:03
because I didn't wanna do all that, right, And I understand, I
16:07
understand, But other than that, it's it's been a good experience for me.
16:11
I know, everybody is not has not had that outcome. I have.
16:15
My niece had decompression surgery and had a horrible outcome, So I know
16:19
people personally who have not had as good of an outcome, but it was
16:23
it was a good choice for me. It could be because it was it's
16:26
twenty years ago, so that was old school surgery. Like, it wasn't
16:30
laposcopic. It was we gonna we're gonna cook to your school, We're gonna
16:36
drill this part off, We're gonna make some space. It was the old
16:40
school surgery. So I don't know if that's why I had a good outcome
16:44
compared to people who've had it more recently. I'm I don't know, but
16:48
I'm thankful. I'm for the healing that he gave me because it was pretty
16:53
rough before that. Yeah, and I I can honestly say it is a
17:00
very life changing experience when you get that news. For me, I found
17:04
out it was an incidental finding. I had a stroke, and that's how
17:10
I found out that I had Kiari malformation. And it was basically I went
17:15
in for the stroke. However, thirty days after getting out of the hospital
17:19
and I'm thinking I'm getting back to normal and so on, and I and
17:25
I was taking my children to school, and when I got to the school,
17:30
I could not figure out for the life of me, how to unlock
17:33
the doors to let them out of the car. And I was like,
17:36
Okay, this is not normal, this is not right, and let me
17:40
figure out what I need to do. So I called my aunt, had
17:42
her calm pick me up and take me back to the emergency room. And
17:45
as I'm in there, one of the nurses comes to me and she's like,
17:49
have you ever heard of Kiari malformation? Because one of my colleagues has
17:55
just been diagnosed with this condition, and the symptoms that you have and that
17:59
I've been reading in your chart are similar to what she's experienced. And I
18:03
was like, you know, I don't know, but I'm in the hospital.
18:07
All I had was my phone, and of course I'm going to you
18:11
know, to the internet to Google, and I'm like, these symptoms sound
18:15
very familiar. But I what I realized is that I started having symptoms at
18:21
the age of eighteen after having my daughter. But I'm just you know,
18:26
I'm used to having headaches, my grains because I've had on my whole life.
18:30
I used to have nosebleeds, you know, things of that nature,
18:33
heart palputations, all of those things I experienced in my teenage years, but
18:40
didn't really think anything of it because I was a tomboy. I'm always outside
18:44
running, cutting flips, skating, doing all the stuff that you know would
18:48
injure you, so to speak. So I'm doing all of that stuff and
18:53
it never dawned on me. And then like I got a really bad headache,
18:59
and and it was like, Okay, this headache is really bad.
19:03
I'd had all of my children by then, I have three, and I
19:07
had a headache and I'm like, my head is hurting really really bad.
19:11
And it went from you know, and I'm like, it's just a migraine.
19:15
So I'm in the kitchen scene running hot water over my head until the
19:19
water runs cold because the pain was so bad. But I couldn't put an
19:23
ice pack on it because the ice made it hurt worse. But the only
19:26
thing that helped was hot water, and so I would stay there until the
19:33
water would run cold, and then I would start the process over. But
19:37
in two thousand and nine is where I had my stroke and went in and
19:41
I got my Before I left the hospital that second time, I went downstairs
19:47
to the medical record department to get my medical record, and when I got
19:52
it, I was reading through the files and I saw that it stated that
19:56
I had keyr malformation. The herniation that I had at was five point five
20:00
and I'm like, okay, so what does this mean. So when I
20:06
go for my neurologist appointment, I'm asking He's like, yeah, you have
20:08
KR in my information, but you've also had a stroke, so you just
20:11
need to get used to the fact that you're not gonna be able to use
20:15
the left side of your body. That made me mad, you know,
20:18
And I'm like, I don't have to get used to that. I'm thirty
20:22
years old. I don't have to get used to that. And I don't
20:23
have to get used to you. So I found another neurologist, and when
20:27
I went there, like I could not hold a loaf of bread, I
20:32
could not tie my shoe, I could not button my shirt, I couldn't
20:34
do anything. And it was like okay, And so I told her.
20:40
She looked over my file. She was like, okay, well, first
20:42
off, you go into physical therapy. And I was like, okay,
20:45
great, that's that's a start. And so she talked to me about the
20:49
surgery and she was like, it's a fifty fifty chance for you to actually
20:55
be Okay, you might be you know, where you are now, or
20:59
you could be worse off. And for you, I don't recommend it simply
21:03
because the symptoms that you've already had and you've already had a stroke. Whatever
21:08
damage is done, it's irreversible anyway, so I just don't recommend it for
21:15
you. And I was like, Okay, well that's fine. But what
21:18
I did not like about it is that she took me off of every single
21:22
pain medication there was, and I had to learn how to function being in
21:29
pain, and that pain is excruciating. It is worse than childbirth in MyD
21:38
because it's in your head and it's like pressure that builds up that you have
21:42
no way of releasing. So it made my eyes hurt, my hair hurt,
21:48
my head. It just to blink her, to cough, to sneeze,
21:52
to do anything, it hurt. And I couldn't take any Tyler All.
21:56
I couldn't take anything that she was I need you to have a clean
22:00
slate so that I can treat you properly. When I tell you, that
22:06
was the most tortuous thing I'd ever experienced in my life. But I was
22:11
grateful for it because I learned to listen to my body in a way that
22:17
I'd never done before. However, fast forward to two thousand and thirteen,
22:22
had a headache. Didn't really think much of it because I'm dealing with headaches
22:27
every day. That's the number one symptom that I have. There's not a
22:32
day that I don't have a headache. I'm usually in pain about eighty five
22:37
percent of the time, but I've learned to function through it. But this
22:40
particular night, it was a Wednesday night, September the twenty fifth, I'm
22:44
watching on TV Criminal Minds. My head is hurting so bad, but I'm
22:48
not going to sleep because I'm watching Criminal Minds. So my head is hurting,
22:55
my ears are hurting, and my son is like, Mama, just
22:56
go to bed. You can catch the rerun of this show. I'm like,
23:00
no, it's a new episode, so I'm gonna stay up and watch
23:03
it. So I stayed up and watched it. Next day, I woke
23:07
up the whole entire left side of my face is numb and twitching. My
23:14
speech has been affected. My left arm is tingling and numb left leg as
23:19
well, So all of these things are happening at the same time. So
23:23
I go to the emergency room. They tell me, it's just complex migraines.
23:29
Well, from September the twenty fifth until September the thirtieth, I've gone
23:33
from the hospital here in town to the one over in Greenville, and everybody
23:41
is saying that it's complex migraines. And you know, for most black women,
23:45
when you go to the hospital, number one, they don't always believe
23:48
that you're in the severity of pain that you're in. So they will often
23:52
think that you're just there seeking narcotics medications. And I'm like, that's not
23:57
the case. I'm really in pain. I can't speak, I'm having a
24:03
difficult time forming a sentence, and you think that I'm here pretending to be
24:08
in this situation just so that I can get some pain medicine. Right.
24:12
So, it was hard for my family to watch me because losing my speech,
24:18
losing the ability of my left side, and all of that. It
24:22
was very, very hard for them to watch me because it was touch and
24:27
go. No one knew but to be in the position that I'm in now,
24:33
to be able to speak, to be able to move, and I
24:37
still have the residual effects of the stroke. I still deal with the numbness
24:41
and tingling and speech problems. I can tell when I'm gonna have a bad
24:47
day because the horseness comes in my voice. I end up having to wear
24:52
my glasses some days because I'm dealing with vision problems. I have the rinking
24:56
in my ears and things of that nature. Karim information is definitely not for
25:02
the week. I will say that because of everything that you have to encounter,
25:08
and most people don't realize that when your brain is dealing with a large
25:15
amount of fluid that's not flowing properly, it causes all of these issues.
25:22
And I've been made fun of because I drop things. I have dizzy spells
25:26
that are not like the typical vertigo, because you know vertigo happens when you
25:32
stand up suddenly and your blood pressure drops. Well, that's not what happens
25:36
with me. It happens when I've been up walking at least twenty feet.
25:41
My entire left side will go numb and my arm will start to twitch,
25:47
and I'm praying as I'm walking, like Lord, please don't let me pass
25:52
out, because i don't know what's gonna happen or where I'm gonna end up.
25:56
But that's what happens. And it took me a while to find a
26:00
good neurologist. It took me some time to find a primary care provider who
26:07
understood that ki malformation affects every part of your body because it's happening in the
26:15
brain, and the brain is what controls your body, and if it's not
26:18
working properly, your body's not gonna work properly. Having blood pressure concerns I
26:25
had to get. He had to actually have a colleague be diagnosed with Kiari
26:30
malformation for him to understand the severity of what I was dealing with, and
26:34
unfortunately, she had the surgery, and after she had her surgery, she
26:40
was not able to work anymore. So a lot of the people that I've
26:45
met with Kiari malformation have not been had success stories. And to hear your
26:53
story is truly amazing. God bless you, and I am grateful that it
27:00
worked out for you. And I think that also with the age that you
27:04
had, your surgery played a major part because you know, as the younger
27:11
people, because your brain is is technically still developing, you know around that
27:15
time. It doesn't fully stop developing until around age twenty one. Most people
27:22
don't understand that part, but it does play a major role in the success
27:26
of that surgery because anyone who was older or not. As I said,
27:30
I was thirty when I was finally diagnosed. The misdiagnosis is often either migraines
27:37
simple migraines. Of the different severities. It is lupus, it is what
27:45
else there's lupus, There is ms MS yep. They did that for me.
27:55
I went and had the spinal tap and all of that stuff done.
28:00
It is it's a lot of different conditions that you end up being missed out
28:06
and use what I can't name them all right now because my brain is going
28:08
blank. And that's another issue, the brain fog that happens with KR that
28:14
you lose your train of thought, but also conditions that are connected to it,
28:19
especially type two is final biffia and hydrocephalus. Those are connected with type
28:26
two of kyr malformation and most people don't even think about that that that's connected
28:33
to that as well. But feel like I also feel like my mental health
28:38
issues. I deal with depression and anxiety, but yeah, they were significantly
28:44
worse. Yes purgery my brother, My brother always tells me they went in
28:49
there and fixed my brains. I can stop crying so much. I used
28:52
to be just like emotion, because it does affect that down and well,
28:57
my anxiety is probably worse now, but I think that's because I'm a mama.
29:02
But my person was a lot worse and my emotional ability was a lot
29:07
worse pres So I do think that that also had an effect on it too.
29:12
I just didn't know what does. Yeah, I definitely agree with that.
29:15
And also people don't understand that the weather plays a major part in whether
29:21
you're having flower ups or not, because when the pressure changes in the air,
29:25
it changes the pressure in the head as well, and so I can
29:29
usually tell if I'm gonna have a bad day if I look at the weather,
29:33
which I try not to do because I don't want to anticipate the level
29:37
of pain. But usually I'm awakened in the middle of the night. If
29:41
it starts to storm overnight, I'll wake up in the morning with a tremendous
29:48
headache because of the weather change. And now that it's starting to get cold,
29:52
I know what to anticipate with my own body, and I try to
29:56
prepare because usually in optoe over or somewhere in there, I'm going to the
30:03
hospital. But I do everything I can to avoid going, but there's a
30:11
lot of information to unpack about keyr mainformation, and I could talk about this
30:18
condition all night, but you know, I didn't want to do that.
30:23
I wanted to just bring some awareness to people about this condition because it is
30:29
very rare and a lot of people haven't heard about it. And oftentimes people
30:33
see me and then when I start to talk about what I've been through with
30:37
this condition and my daily battle, they find it hard because it's the common
30:42
saying, well, you don't look sick, you don't look like you feel
30:47
bad. A smile can hide a lot of things simply because you've learned to
30:52
move and maneuver through the pain. And as moms, we know how to
30:56
do that anyway, because you can be it's sick, and it's I'll get
31:00
out with the flu or whatever, and your kid's gonna still be like,
31:03
but I need you to bake twenty cupcakes or something. You know, you
31:08
still that's mine is sea, It's always something. So as a mom,
31:19
you always have to keep going no matter what. So you learn to function
31:25
through the pain because that is what you do. And so my kids have
31:30
been a blessing to me because this journey from two thousand and nine until now
31:37
now they think that they're my parents. On the other end, you know,
31:41
for if I if they look at my face and say, okay,
31:45
well you don't look like you feel good. You need to go lay down,
31:48
I may still try to argue with them and say, okay, well
31:51
I got this, that and the third to do, and they like,
31:55
Nope, you're gonna go lay down because you're not gonna be able to move
31:59
tomorrow if you don't go lay down right now. So, you know,
32:02
it's one of those things that I'm grateful that God has kept me safe and
32:08
kept me functional because it does affect me in so many different ways that I'm
32:19
able to continue to do what I know to do because they're I'm some days
32:25
I'm afraid to go to sleep simply because I know what it looks like.
32:30
Yeah, because I've woken up a whole different person, And that's the fear
32:37
of going to sleep. Sometimes. Am I gonna wake up being able to
32:42
move my body? Am I gonna wake up to be able to use my
32:45
voice to speak? Because I went to bed one night talking perfectly fine,
32:52
and the next morning I woke up and I couldn't do any of that and
32:54
it just went downhill from that. So I have a little fear of going
32:59
to sleep some times. And then there are times at night when I have
33:02
those choking spells and that wakes me up, and that scares my kids,
33:07
and most of the time I'm alone, you know, and that's a scary
33:12
sight. So it's it's a lot that Yeah, those those days, Yeah,
33:17
it's scary. I would just say in terms of awareness for folks who
33:23
are on the call, doctors are not going to think about this. You
33:29
know, if you have any of the symptoms that we've described, they don't
33:34
think about this first. They typically one of the things they say about kiari
33:39
or one of the one of the things they say about medicine is and I'm
33:44
not gonna quote it exactly right, but it's like for doctors if they hear
33:49
if they hear the sound of hoofs hoofs coming, they think horses. Yeah,
33:53
but they consider kari. Folks with kiari to be zebras because it's the
33:58
lot. It's not the thing you think of about. It's not the thing
34:00
they look for. They aren't gonna look for kiar. You would have to
34:02
specifically ask a doctor most likely to do an MRI to check for KR malformation
34:10
because you've learned about it, you think your symptoms might align with it.
34:14
They're gonna consider everything else but for this, and it may just be,
34:19
like it was for both of us, an incidental finding that they just mentioned
34:23
along with something else. And then, like I said, my doctor wouldn't
34:25
even call me back. He send me a letter in the mail. But
34:29
I have another friend who who recently found out she has one, and because
34:34
she was seeing the neurosurgeon about some spine issues and she was like, well,
34:39
wait a minute, I got this kiar too, and then and the
34:43
neurosurgeon was like, yeah, it's fine, everybody. Lots of people have
34:45
those like that was a response. A lot me just brush it off.
34:49
Yeah, So they won't, they won't think about it. You'll have to
34:52
advocate for yourself or have someone who can advocate for you if you have any
34:57
inkling that this may be something you're dealing. Yes, and most of the
35:01
time we often are told that it's just my grains, and that's the that's
35:07
the end result. It's just mygrains. We're gonna treat you for my grains.
35:10
I ended up doing the botox thirty six injections in one sitting to try
35:16
to help with my migraines. I did it one time, and I will
35:23
do that. I did it once, and I mean thirty six injections and
35:29
one sitting was a lot. But the most painful injection of all was the
35:34
one that they did right here in the center. Oh my God, that
35:37
was just you can't pay me to do that again. You just can't.
35:40
I mean, I took it because I was like, let's just try,
35:45
you know. But God has blessed me to be able to do what I
35:50
do and to continue to speak, and you know, until he says,
35:54
okay, look here, I'm gonna du go ahead and had it surgery.
35:59
It's not for me. It's not for me at least not at this moment
36:02
and not at this time. But I am grateful for you being here sharing
36:07
your experience and sharing that you had a success with dealing with kari malformation and
36:15
the decompression surgery, because that is an experience in itself. The recovery is
36:22
not as easy. I'm sure was not a walk in the park. But
36:28
if I can tell you something funny, if we have time about my recovery
36:31
experience, so like I told you, when I knew I was gonna have
36:36
surgery, I waited eight months. So yeah, I decided in like,
36:39
well not even eight months. I decided in like February. Surgery was in
36:43
August, and so you know, I'm just continuing with life, feeling like
36:49
feeling bad. So my brother got married in July. Okay, my brother
36:53
got married in July, and so at the day of my brother's wedding,
36:58
my mom started having double vision out of nowhere, and so we just thought
37:05
she was stressed out about my brother getting married because that's her only son.
37:07
You know. She like, you just grieving your baby about to leave you
37:14
today, So we kind of ignored it. She went through his wedding,
37:16
she still didn't feel well, still having double vision. So the next day
37:20
she went to church and she was a pianist at the church. So she
37:24
piano was her life, her her kids, and piano my mama's whole life.
37:29
So when she got through playing, she said, take me to the
37:31
hospital because she she saw two keyboards and so that was the thing that was
37:37
like a nah something, right, So she goes to the hospital to discover
37:40
that she has a brain tumor. At the weekend that my brother gets married,
37:46
and it's a pituitary tumor, so it's benign, but it had like
37:51
grown into her optic nerves, so she needs to have emergency brain surgery on
37:54
July fourteenth. My surgery was August first. So my brother just got married.
38:00
He's leaving for his honeymoon. I called him and I was like,
38:04
you gotta come back because mama's having an emergency brain surgery in the morning.
38:07
He was like, no, you're having brain surgery in two weeks. I
38:09
was like, yeah, I know, but mama's having emergency brain surgery in
38:13
the morning. You gotta come home. So he comes back. We my
38:17
mom gets sent to Baptists. She has emergency brain surgery in the morning.
38:22
I canceled my surgery because I'm like, we can't have both of us out
38:28
with brain surgery mama, and she was like, no, We'll we'll figure
38:31
it out, you know, put you keep your surgery schedule waiting too long,
38:35
blah blah blah. So my mama had brain surgery on July fourteenth.
38:38
I had brain surgery on August first. In recovery together, I mean at
38:45
home at her house. She was in her room. I was in my
38:47
room across the hall. My sister was running back and forth between the two
38:50
of us, and then whole story even crazier. My brother, I don't
38:58
remember what happened with his car at the time, but he was driving my
39:01
mama's car while my mom was recovering his car. And so this is hilarious.
39:09
The car got stolen while my brother was driving it. Oh god,
39:15
so that happened. But then I guess he didn't I guess he didn't put
39:21
any gas in the car. So the people who strow the car ran out
39:23
of there, so they abandoned the car in Charlotte somewhere. So we got
39:28
the car back. Look at this happened in the span of like three weeks.
39:35
My brothers went my mama's emergency surgery, my surgery, and grand theft
39:38
auto and the span of like three weeks. It was the craziest summer of
39:45
my entire life. Oh my god. Yeah, now that is absolutely you
39:50
couldn't have written that too. That is funny. It was sister was like
40:00
grateful that you guys got better so that she could actually have her sanity back,
40:07
because I can only imagine wells does not do medical care whatsoever. She
40:14
is not the helping, knowsting type. She one of the most loving and
40:16
giving people you ever meet. She would literally give you the show off her
40:20
back, but it's sick people. She don't do sick people don't so she
40:22
was about to lose her mind running between my mama and me. Oh my
40:30
gosh, it was wild it listen, that is definitely wild. Listen.
40:37
I hope everybody who tuned in tonight was able to get some knowledge about what
40:43
Kiari malformation is. This rare condition because it's not known. It's still very
40:51
very rare, and some people have trouble mispronouncing it. They don't never know
40:55
how to say. And then you got chary orself. I'll be like,
41:00
no, it's Kiari mount from and so tune in. If you have any
41:07
more questions after this, please DM me. And I'm willing to talk to
41:12
anybody about this to give you the more knowledge that I know and share and
41:16
just tell you about my experience with this. So thank you guys for tuning
41:22
in. And as always you know that I will say this, stay out
41:25
of God's business man Joe business, because God is God all by himself.
41:30
The only thing that he requires you to do is be obedient to what he's
41:32
called you to do. Thanks again for tuning in, and thank you for
41:37
being here tonight. And I'll see you guys next Thursday, where I will
41:40
be talking to my beautiful people who wrote the anthology book. You're just a
41:49
foster parent. You don't want to miss that. I have five beautiful authors
41:53
coming on. So I'll see you guys next Thursday, the twenty eighth,
41:57
at eight. And now good night. I can swears a queen, I
42:06
can flee sears a queen upon hoball