November 14, 2022 • 32 mins
Kyle was in the ER for a break or sprain almost every month. The injuries were too frequent & too severe to be written off as Kyle just being an active kid. There was something larger at work here. Doctors found a growth on Kyle’s spine that thrusts him onto a rollercoaster ride trying to find the source of the problem before permanent damage is done.
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****** SPOILER ALERT BELOW ******
To find out more information on EDS visit the Ehlers-Danlos Society at ehlers-danlos.com or listen to Dr. Bluestein’s podcast - Bendy Bodies with the Hypermobility MD - wherever you get your podcasts.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
We knew there was a mass, but we didn't know
if it was but I as a cancer. There was
just so much we didn't know. Persistent pain is something
that we really see a lot. They tend to accumulate
so many injuries and have so much pain that the
nervous system itself starts to become part of the problem.
(00:25):
It was so hard to be anything other than my
medical conditions. It almost just felt like I was. I
wasn't living, I was just essentially existing. I was existing
to find out why this was happening to me. How
(00:47):
terrifying would it be to fight an unknown enemy, one
you didn't recognize and didn't see coming. What if that
enemy was coming from within a disease that even doctor
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:11):
are their stories. I'm Lauren Bright, the checko, and this
is symptomatic. Kyle Thompson grew up in rural Georgia, an adventurous,
(01:34):
active kid, playing any sports. His parents would let him
try football, basketball, baseball, and acrobatic tumbling, while also diving
into the world of video games. I'm big into Overwatch.
That's probably one of my favorite games. Overwatch, and there's
Rindescape and Rust are a couple of the ones that
(01:54):
I play. And then of course, like you know, there's
like Terraria, Minecraft, just a lot of those games passed.
The phobia is really funny like that one. So if
you've heard it, heard about any of those, oh yeah,
big Mindcraft Household was huge. Minecraft. I think it's kind
of like a progression from Legos. Oh absolutely absolutely. What
(02:15):
kinds of things did Kyle loved to do? Oh? So
he was always on the move. Um, we're pretty proud
he's we kept him alive this Um. He was just
a go getter. If he had to be sitting still,
he was not happy. That was Laura Thompson, Kyle's mom.
(02:35):
I was a an energy ball. That's how my mom
would describe me. I was constantly wanting to run around
or just follow people and just run and just do
whatever I could get my hands on. He was just
busy and active, and as soon as he was old
enough he started playing sports. At age four, he started
(02:56):
playing baseball. As soon as Kyle's ordered to play more
competitive sports, the injuries started to rack up. I would
constantly come back inside from playing outside and I would
have a bunch of cuts and bruises and weird just
injuries and little stuff like that. And you know, I
was always just told, oh, you're an active child. You know,
(03:17):
it's just because he's a boy, or he's very active
when he's outside. What seems like normal active kid injuries
was actually the start of a really long journey of
symptoms and multi decade battle for Kyle to find a
diagnosis for what was plaguing him. I actually have a
picture of him with a cast on one leg and
(03:38):
a walking boot on the other leg, and he was
insisted on still playing catcher in baseball because he didn't
have to move. So it's a pretty funny picture, but
that was him. He just loved it, so he did.
He just he just pushed through. Kyle was in and
out of the hospital constantly. Injuries that wouldn't be too
(03:59):
difficult for most people to brush off seemed to land
him back in the r There was this one time
where I was walking in a forest with my brother
and we were just hiking through the woods being kids,
and I stepped in a small hole in the woods.
I broke my foot. I completely like shattered my entire
foot because I stepped in a hole wrong. He was
(04:20):
literally sitting on a bike and he just popped the
handlebars up and the radius bone in his arm broken two.
So he walked home and he just I saw his
arm and I said, let's go. You know, the doctor said,
bones just don't break like that the whole the bike.
Seeing her son's ongoing suffering, Laura had her mother's intuition
(04:42):
tangling that something was off. It couldn't just be that
her kid was unmucky. As a mom, I questioned all
the time, should we be checking his bones? Is there
something wrong? I don't feel like he should be hurt
this much. And I heard over and over again, he's
just got bad luck. He's just clumsy. He needs to
(05:03):
be more careful. But it was just the littlest stuff
ended up being such big injuries. So you just had
your mother's instinct and this nagging fear that something deeper
was going on. Most of his life I did. I
felt like something was just wrong. You know, he had
(05:23):
so many friends and none of them were going to
the e R like this many times. I mean, I
know other kids were injured, but it was to the
point where it was like something just is not right.
That's how I felt. It felt like Kyle couldn't go
more than two months before heading back to the e
R with another break or sprain. Each time, the doctors
(05:45):
chalked it up to growth plate fractures as part of
Kyle's teenage growth spurts. How many bones did he break? Like?
How frequently was he injured? Oh my goodness, I would
have to sit and count how many either braces or
casts or oh goodness, there has to be over twenty,
(06:14):
easily twenty. And then when he he his ankle pain
just became horrific. All of these injuries made Kyle's middle
school and early high school years extremely difficult. He always
seemed to be in a cast, a walking boot, on crutches,
or all three. It got in the way of him
(06:35):
being able to just go to lunch without needing the
help of a friend to carry his lunch tray. He
was teased a lot. I think I tried to protect
him from some of that. Kids would call him stormtrooper
just things like that, and they would make fun of him.
I can't imagine, particularly given you know your desire to
(06:58):
be active how difficult that must have been psychologically on you.
Oh my gosh. Yeah, Like all I ever wanted to
do was play sports or just hang out with my
friends and just like skateboarding activities or go biking and
just things like that. It always felt like I was
held back by my injuries, which is like such a
terrible experience because when it comes to injuries, the normal
(07:21):
person goes through a broken arm once in their life
or something like that. And to go through constant breaking
of bones and dealing with physical therapy and going to
the doctors, it was very isolating, and obviously, at the
age of fourteen, no one around me understood what I
was going through. So it's not like I could turn
to my friends or turn to anyone around me. It
was it was only myself, you know, going through these things.
(07:43):
So it was really tough on my mental health for sure.
Relentless teasing from kids who couldn't comprehend Kyle's suffering and
frustration with his own situation. His body physically could not
keep up with his desire to do just everyday kid things.
On top of the frequent injuries, there was also a
chronic lingering pain. When you talk about the injuries that
(08:08):
you had. Were you also experiencing ongoing pain? And how
would you describe that kind of pain to me? Yeah?
So I dealt with what I would just call it
as a child, as I was having weird pain. If
I were to describe it to anyone, it would be
so difficult because it was so uncomparable to the normal
pain that kind of anyone experiences. My bones were literally aching.
(08:32):
I mean I would lie awake in bed just struggling.
It was awful to do with this underlying chronic pain
was ignored as the doctors focused on the individual injuries
in front of them each time, Fix this sprain, fix
this break, all without seeing the dots connecting each of
these events together. Like why isn't he healing? Right? I questioned?
(08:55):
You know a lot, but it just didn't get me anywhere.
I couldn't the doctor. Would we take him in for
an injury and they would focus on that injury if
they didn't look at the whole picture, and they didn't
look at even his former injuries and things like that
and put it together as a big picture. Laura was
constantly told it was just bad luck, or that she
(09:16):
should wrap Kyle in bubble wrap. The guilt of feeling
like a bad parents started to creep in. She and
Kyle continued their search for answers. Kyle was prescribed accutane
for his severe acne, which appeared to trigger new debilitating symptoms,
symptoms that shed new light on what was potentially attacking him.
(09:37):
I turned sixteen and I was dealing with a lot
of acne, and so I started on a medication called acutane,
which has a lot of serious side effects. It's a
really strong medication, and I had pretty much all of
the red flag symptoms, the ones that are like you
need to stop the medication, called your doctor and all this.
And I was experiencing blackouts. So I went stand up
(10:00):
after sitting down for a little bit, and I would
lose my vision and I would feel like I was
going to pass out, so I would kind of like
stumble and fall to the ground. And at that point
we were like, okay, so something serious is going on.
It was sent to a pediatric cardiologist who ultimately diagnosed
me with postural orthostatic tachycardia syndrome POTS. POTS. Postural orthostatic
(10:23):
tachycardia syndrome, also known as POTS, is an abnormal increase
in heart rate that occurs after sitting up or standing.
So that was my first kind of true diagnosis. But
you know, it didn't really leave me with any real answers.
It still had nothing to do with any of my injuries.
It did not help with my worries of all of
(10:47):
his injuries because they were very not related. That diagnosis,
when you initially were given it, did that make you
hopeful that now you had coping mechanisms to deal with it,
that things were going to change. Honestly, no, it felt validating,
(11:09):
of course for a couple of reasons, but ultimately it
was a very small piece of the puzzle and it
was probably the least important one. It really felt like
a small victory. And of course I I still appreciate
the fact everything that my cardiologists did, but it wasn't enough.
I Kyle. I have to say my heart kind of
(11:31):
breaks for sixteen year old Kyle because you're going through
all of that and then you're dealing with acne, which
I know lots of teenagers deal with, but when you're
dealing with it to the point that you feel you
have no other choice but to go on accutane, you
just must have felt like you were getting bombarded on
(11:52):
every single front in terms of your health. Yeah, it
was so hard to be anything other than my my
coal conditions or my symptoms. It was so I'm not
even sure if I could describe it well. It it
almost just felt like I was I wasn't living, I
was just essentially existing. I was existing to find out
(12:14):
why this was happening to me. You must have felt
so isolated. It became so overwhelming. It showed everyone noticed it,
my my parents, my my brother, my friends. It led
to challenges in my relationships around me. I just lost it.
It was just too much to handle, and so I
(12:35):
had to kind of like take a break from everything.
He's just has had a lot to deal with, all
the injuries and everything, and it just even made getting
around school hard. So I think he just got to
a point where he just needed a break. I had
to stop. I was having daily panic attacks at school.
It felt impossible. I felt like I was against an
(12:56):
impossible battle, and ultimately I had to I had to
just sort it out at home, and so online school
was my next best option. Life started to become a
little easier when Kyle switched to online home school. His
flare ups became more manageable, and he found a little
bit of normalcy and happiness when he started taking acrobatic
(13:18):
tumbling classes from sixteen to nineteen, I stopped having those
strange growth play issues. We assume that they had closed.
So I was doing much better in terms of you know,
at least I was only breaking my ankle once a
year instead of like six times a year. When he
tried tumbling. I've never seen him more happy. He just
(13:42):
that was his favorite thing in the world. To see
him in a place where he just is so happy
and loves it. That's what you want for your kids.
And I thought, oh, maybe this, maybe he'll be able
to do this without so many injuries. And he was
also exceptionally flexible. Oh absolutely, yeah. So with every injury
(14:02):
that you know, of course, they always prescribed physical therapy
and things like that. In the physical therapist could go, well,
you can already do all the things that I'm supposed
to help you get to because he's so he was
super flexible. Looking back at his recovery from injuries growing up,
physical therapist often thought he didn't need much help rehabbing
because he never had a problem with his range of motion.
(14:25):
But everything changed. When Kyle was nineteen, he started experiencing
really bad back pain and went to the chiropractor for
some more treatment. That was really concerned and I, I
believe I started seeing him for about a month or so,
and there was this one time that he did his
(14:46):
adjustments on me and I was like, oh my gosh,
I feel so much better. Being the super active young
man he was. Kyle went straight back to acrobatic tumbling
practice after what he thought was that he a link
chiropractor appointment, But after practice ended, he started to notice
an odd sensation in his legs, almost as if they
(15:08):
were really fatigued or heavy. Can you explain that fatigue?
When you say it was like nothing you'd ever experienced before,
how would you describe it to me? So I try
to explain it. How it feels when you are maybe
sitting on the floor in a strange position and your
leg goes to sleep or your foot goes to sleep,
(15:29):
and the feeling that you have when you stand up
and some of that blood starts flowing back into your leg.
It's that kind of numbness that you get. It's it's
that strange tingling sensation and that was starting to happen
in both of my legs, and it got to the
point where I was just an excruciating pain. My lower
(15:49):
back was just it felt like a knife was being
jabbed into my spine. I told my parents like I was, like,
there's something very wrong right now. I could just tell
there was red flags everywhere. Kyle and Laura rushed to
the hospital. The doctors took an X ray, but everything
(16:10):
looked normal. Nothing on it seemed to explain his excruciating
back pain. Was this tied to the symptoms that continued
to accumulate or was this something new? It was definitely
the some of the worst pain I had experienced, and
it was nerve pain, which was a whole different sensation
from the chronic pain or muscular skeletal pain which I
(16:32):
had been experiencing. And the nerve pain was no joke.
It was brutal on both the mind and bodies. It
was just a lot. So I went and saw the
spinal specialist who ordered an m r I and I
had it the day of which is unheard of. Usually
an m r I takes a couple of weeks to schedule.
So I had the m r I that day. That
I saw him and we're like, Okay, we'll get get
(16:55):
some answers in a couple of weeks. But Kyle didn't
have to wait a couple of weeks to find out
the results. The doctor had a feeling that something was off,
and luckily for Kyle, that doctor read the results the
same night. They were terrifying. They walked up to my
room and said that they had some bad news for me.
(17:17):
I think my mom already started crying, and I was like, oh, ship, like,
something is obviously very wrong. I thought I had maybe
kind of fractured my spine or something, or I'd broken
a vertebrate or something, and they said they found a
large tumor in your spine, and I lost it. It
was I didn't think it was real, and I didn't
(17:38):
think it was a prank, but I was like, there's
no way that this is happening to me. That night
was one of the hardest nights I had gone through. So,
oh my gosh, Kyle. Yeah, so I can imagine probably
(18:02):
one of the most difficult things you and your husband
had dealt with his parents was walking into his room
and telling him that he had a tumor in his spine. Sorry,
That was absolutely awful because we knew there was a
mass We knew it was l ford S one in
(18:25):
his spine, but we didn't know if it was you know,
butinn is a cancer. There was just so much we
didn't know. So that was a very hard conversation. I
apologize no when he told me that, all I could
(18:48):
think of was having to walk into the room and
not having the answers that you want to desperately give
your child in that moment. Yeah, just just because act
of what you said, Because you know, as a parent
and as a mom, you're supposed to be able to
fix what's wrong, and to just come in with this information.
(19:11):
It really wasn't until the next day that we met
with a neurosurgeon that we really knew what we were
dealing with, and that was that was Actually that conversation
was fifty times harder. We'll be right back with Symptomatic,
a Medical Mystery Podcast. Now back to Symptomatic, a Medical
(19:40):
Mystery Podcast. Kyle Thompson had been suffering from a mysterious
illness for almost two decades, countless breaks and sprains throughout
his childhood. A rough fight with the side effects of
accutane a diagnosis of POTS, which still left his worst
symptoms on, explaining frustration that no one seemed to hear
(20:03):
his full story or try to put together all the
pieces in a way that made sense, and now doctors
have pound of tumor on Kyle's spine. I was having
the red flag symptoms of the numbness and the tingling
and the pain. There was obviously some some serious stuff
going on, and so I was pretty much rushed to
the hospital and they got me into my room very quickly,
(20:28):
and they told me that most likely the chiropractic adjustment
caused the tumor to herniate, which means it started to
bleed internally. Three days later, Kyle had surgery to remove
the tumor. The tumor had intertwined itself so much with
his spine that the doctors had to remove one third
(20:49):
of his vertebrae with it. The doctors were luckily able
to remove the entire tumor and found it was benign
but had been growing rapidly. All of that was a
huge which relief to Kyle and his mom, but a
couple of weeks after surgery, something strange started to happen.
They noticed a large bump forming at his incision. We
(21:11):
noticed some weird fluid coming out of it, some clear fluid.
We're like, what is happening. So we went to the
doctor and he said, you have a cerebral spinal fluid leak.
And so I was leaking spinal fluid out of my
incision and I was having horrible headaches. Cerebral spinal fluid
leak headaches are no joke. They're terrible, the worst head
(21:34):
pain I had ever experienced. I couldn't even open my
eyes while I was in bed, it was so much.
Kyle had the spinal fluid drained, but the bump returned
the next morning. He was now at his breaking point.
Through all of his injuries as a kid, the pot symptoms,
the scare with the tumor, and now these spinal fluid complications,
(21:54):
it was adding up to be too much for him.
I was done. I was mentally that was it. I
kind of honestly just like gave up. And I didn't
even want to I didn't want to go. I didn't
want to deal with another issue because I knew that
if the bump was back in the morning, I was
gonna have to have surgery again. On the same area
(22:17):
that I had been recently cut open into, which it
was so mentally taxing to think about that again, think
about the fact that the doctor had once again cut
into an already damaged tissue. Was a very strange feeling,
a roller coaster of emotions, symptoms, diagnosis and treatments, treatments
(22:42):
that felt like they weren't making any significant progress. Even
the successful surgery to remove the tumor in his spine
left lasting side effects, leaking spinal fluid. But these lasting
side effects turned out to be the key clue to
finally finding out what had been plague and cart all
these years. After the second surgery, my spinal surgeon came
(23:07):
into the room after everything had healed, and he said
I had extremely fragile skin and that he had only
ever seen that in patients that get diagnosed with Eilish
Danless syndrome. And I just went, oh my god, I
mean I just got chills. I just had chills again.
(23:28):
I was like, did you recognize something is wrong? And
we were like, okay, what does that have to do
with me? I don't we don't understand. And we started
googling the condition, started learning more about what connective tissue
meant all these things. And my mom and I just
(23:50):
looked at each other when we were researching these things,
and she's like, this is you like this, You are
this condition. You are exactly every symptom that they mentioned,
or or every feeling or all of the strange things
that I experienced as a child. Kyle and Laura went
to see a geneticist who gave them the official diagnosis
(24:13):
of Eiler's damn those syndrome, also known as e d S.
That must have been incredible, because it's like you've been
looking at this puzzle for almost twenty years at that point. Yeah,
you know, it's funny. It felt like one of those
uh in those cheesy detective movies where they put the
newspaper over something in the words match up or whatever.
(24:34):
It felt like that. It was so at the beginning
it was very validating, and then a couple of days later,
I just thought it was comical because it was like,
there's all these pieces just lined up and it it
really just made sense. I just thought back and I
was like, how did no one put this together? Like
all the signs were there for decades and we just
needed the one person to think outside the box and
(24:58):
connect all of these weirds and them together. What is
this diagnosis meant for you and for for Kyle, Well,
it means at least we know. Not knowing was harder.
I think it is a relief. You know there's no
cure for either stand those there's things you can do,
(25:20):
and that's good. But knowing that you're not just crazy
and making things up, and sometimes I want to go
back and say, you see you guys, you know, don't
be so mean. You don't know what people are dealing with.
So it's it's helped in a lot of ways a
bit of much needed relief and validation for Kyle and
(25:42):
his mother. Knowing the illness they were up against, they
were no longer blindly battling this disease. Kyle's current doctor,
Dr Linda Bluestein shares a bit more on the typical
symptoms of e d S. So e d S stands
for Ailor's Danlois syndromes, which are a group of nective
tissue disorders, which basically means that there's something wrong either
(26:04):
with your with your collagen or the different components that
make up your connective tissue, or with the way that
your connective tissue works in your body, so people can
present with different symptoms and signs of these conditions, and
oftentimes we can visually see that people that have hypermobility,
(26:25):
meaning that their joints are very bendy. So interestingly, persistent
pain is something that we really see a lot people
who have e d S. They tend to accumulate so
many injuries and have so much pain coming into their
nervous system that the nervous system itself starts to become
part of the problem, and the nervous system no longer
processes pain signals appropriately. The frequent injuries Kyle had as
(26:50):
a kid, the continuing persistent pain, the flexibility, all of
the symptoms Kyle had been showing for years. It just
took a rig him to notice the fragility of his
skin to be able to put all the pieces of
the E d S puzzle together. So how common is
e d S. It's really hard to say because we
(27:12):
just changed the classification. For a long time, people said
that it was one in three thousand to one in
five thousand people had this condition. A more recent study
said it's probably more like one in five hundred that
had hyper mobile e d S. Kyle suffered through nearly
two decades of pain and confusion that pushed him to
the brink of giving up and just becoming numb to
(27:34):
the world. He seemed to always be injured in countless
casts and walking boots. He was teased because of all
of the injuries, pushing him to drop out of school.
He suffered through a scare with a tumor on a
spine that took one third of his vertebrae with it.
He pushed through all of these trials and misdiagnoses to
(27:55):
still have a positive outlook and energy about him. How
are you so positive? What do you credit the Kyle
you are today? How have you overcome so much? M hmm.
It's hard to say exactly why. I think this has
kind of always been My personality is like very resilient
(28:17):
and not wanting to give up. And I've always been
curious as to the wise of the world, and you know,
why is this happening to me? And what is the
best explanation for this? And I always wanted to figure
that out. I feel like that kind of gave me
the drive to overcome the limitations that these diseases put
on me. Limitations from his symptoms and stigma from other people,
(28:41):
something Dr Bluestein is all too familiar with herself, because,
like Kyle, she struggled with multiple symptoms before also being
diagnosed with e d S. For me personally, I mean,
I went through a very low point in my life
psychologically because nobody believed me, including my own colleagues, and
(29:03):
I had, you know, people say hurtful things to me,
and I stopped bleeding in myself, and uh, you know,
so I know I've been there. Kyle has turned his
life experiences into action, becoming an advocate for people suffering
from similar illness and feelings of isolation that he had
to endure. He's now working with Dr Bluestein to create
(29:24):
a safe place online through social media so that other
people's journeys can be easier than his own. It's unrealsome times,
and I it feels like a fever dream. I still
kind of can't believe that the things that I'm able
to do. And to the people that think that social
media is just social media, it's it's not. When it
comes to these conditions, doctors often don't listen to us. Unfortunately,
(29:47):
a lot of the people in the community are gas
lit and told that a lot of the symptoms are
on their head and that they're they're not truly experiencing them.
And so they've started a community on social media, and
we've been able to have a lot of people in there,
and people are getting answers and a lot of their
questions and concerns are being addressed. Social media is a
(30:08):
lot more than just an app that you scroll on.
It's a community at this point that we've built. What
advice would you have for other parents who might find
themselves in a similar situation. I would say, if it's
your child, even if it's a young adult, even your
adult child, be their advocate because they may not know
(30:31):
how to do it. Speak up, ask questions. Do not
be afraid because someone may have more medical background and
education than you do. Because there's something to be a mom,
a parent, a dad, and you have this gut feeling
and if you really feel like something's wrong, you've got
to push and don't make people feel like you're crazy
(30:52):
or that you're doing anything wrong, because this is I mean,
this is your child, So don't give up. Keep pushing.
To find out more information on e d S, visit
the Eiler's Danlos Society or Eisler's Danlos dot Com, or
listen to Dr Bluestain's podcast Bendy Bodies with the Hypermobility
m D wherever you get your podcasts. My name is
(31:15):
Kyle Thompson and I struggle with a medical mystery for
almost two decades until I was diagnosed with hypermobile Isiler's
Danlos syndrome. On the next Symptomatic, Antoinette is constantly battling
flare ups due to sickle cell disease, but none of
the treatments and therapies seem to help at all. Something
else is at work. There are signs where you feel like,
(31:38):
oh God, you want to die just if you put
out to misery because the pain is so bad. Antoinette
struggles with being ostracized by her friends while pushing through
multiple life threatening trips to the e R hoping to
find an answer to what's been ailing her. Symptomatic A
Medical Mystery podcast is an original podcast. I Heart Radio
(32:01):
are shows hosted by me Lauren Bright Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
is Matt Stillo. Our producers are crra Kaiser and John
Irwin
We knew there was a mass, but we didn't know
if it was but I as a cancer. There was
just so much we didn't know. Persistent pain is something
that we really see a lot. They tend to accumulate
so many injuries and have so much pain that the
nervous system itself starts to become part of the problem.
(00:25):
It was so hard to be anything other than my
medical conditions. It almost just felt like I was. I
wasn't living, I was just essentially existing. I was existing
to find out why this was happening to me. How
(00:47):
terrifying would it be to fight an unknown enemy, one
you didn't recognize and didn't see coming. What if that
enemy was coming from within a disease that even doctor
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:11):
are their stories. I'm Lauren Bright, the checko, and this
is symptomatic. Kyle Thompson grew up in rural Georgia, an adventurous,
(01:34):
active kid, playing any sports. His parents would let him
try football, basketball, baseball, and acrobatic tumbling, while also diving
into the world of video games. I'm big into Overwatch.
That's probably one of my favorite games. Overwatch, and there's
Rindescape and Rust are a couple of the ones that
(01:54):
I play. And then of course, like you know, there's
like Terraria, Minecraft, just a lot of those games passed.
The phobia is really funny like that one. So if
you've heard it, heard about any of those, oh yeah,
big Mindcraft Household was huge. Minecraft. I think it's kind
of like a progression from Legos. Oh absolutely absolutely. What
(02:15):
kinds of things did Kyle loved to do? Oh? So
he was always on the move. Um, we're pretty proud
he's we kept him alive this Um. He was just
a go getter. If he had to be sitting still,
he was not happy. That was Laura Thompson, Kyle's mom.
(02:35):
I was a an energy ball. That's how my mom
would describe me. I was constantly wanting to run around
or just follow people and just run and just do
whatever I could get my hands on. He was just
busy and active, and as soon as he was old
enough he started playing sports. At age four, he started
(02:56):
playing baseball. As soon as Kyle's ordered to play more
competitive sports, the injuries started to rack up. I would
constantly come back inside from playing outside and I would
have a bunch of cuts and bruises and weird just
injuries and little stuff like that. And you know, I
was always just told, oh, you're an active child. You know,
(03:17):
it's just because he's a boy, or he's very active
when he's outside. What seems like normal active kid injuries
was actually the start of a really long journey of
symptoms and multi decade battle for Kyle to find a
diagnosis for what was plaguing him. I actually have a
picture of him with a cast on one leg and
(03:38):
a walking boot on the other leg, and he was
insisted on still playing catcher in baseball because he didn't
have to move. So it's a pretty funny picture, but
that was him. He just loved it, so he did.
He just he just pushed through. Kyle was in and
out of the hospital constantly. Injuries that wouldn't be too
(03:59):
difficult for most people to brush off seemed to land
him back in the r There was this one time
where I was walking in a forest with my brother
and we were just hiking through the woods being kids,
and I stepped in a small hole in the woods.
I broke my foot. I completely like shattered my entire
foot because I stepped in a hole wrong. He was
(04:20):
literally sitting on a bike and he just popped the
handlebars up and the radius bone in his arm broken two.
So he walked home and he just I saw his
arm and I said, let's go. You know, the doctor said,
bones just don't break like that the whole the bike.
Seeing her son's ongoing suffering, Laura had her mother's intuition
(04:42):
tangling that something was off. It couldn't just be that
her kid was unmucky. As a mom, I questioned all
the time, should we be checking his bones? Is there
something wrong? I don't feel like he should be hurt
this much. And I heard over and over again, he's
just got bad luck. He's just clumsy. He needs to
(05:03):
be more careful. But it was just the littlest stuff
ended up being such big injuries. So you just had
your mother's instinct and this nagging fear that something deeper
was going on. Most of his life I did. I
felt like something was just wrong. You know, he had
(05:23):
so many friends and none of them were going to
the e R like this many times. I mean, I
know other kids were injured, but it was to the
point where it was like something just is not right.
That's how I felt. It felt like Kyle couldn't go
more than two months before heading back to the e
R with another break or sprain. Each time, the doctors
(05:45):
chalked it up to growth plate fractures as part of
Kyle's teenage growth spurts. How many bones did he break? Like?
How frequently was he injured? Oh my goodness, I would
have to sit and count how many either braces or
casts or oh goodness, there has to be over twenty,
(06:14):
easily twenty. And then when he he his ankle pain
just became horrific. All of these injuries made Kyle's middle
school and early high school years extremely difficult. He always
seemed to be in a cast, a walking boot, on crutches,
or all three. It got in the way of him
(06:35):
being able to just go to lunch without needing the
help of a friend to carry his lunch tray. He
was teased a lot. I think I tried to protect
him from some of that. Kids would call him stormtrooper
just things like that, and they would make fun of him.
I can't imagine, particularly given you know your desire to
(06:58):
be active how difficult that must have been psychologically on you.
Oh my gosh. Yeah, Like all I ever wanted to
do was play sports or just hang out with my
friends and just like skateboarding activities or go biking and
just things like that. It always felt like I was
held back by my injuries, which is like such a
terrible experience because when it comes to injuries, the normal
(07:21):
person goes through a broken arm once in their life
or something like that. And to go through constant breaking
of bones and dealing with physical therapy and going to
the doctors, it was very isolating, and obviously, at the
age of fourteen, no one around me understood what I
was going through. So it's not like I could turn
to my friends or turn to anyone around me. It
was it was only myself, you know, going through these things.
(07:43):
So it was really tough on my mental health for sure.
Relentless teasing from kids who couldn't comprehend Kyle's suffering and
frustration with his own situation. His body physically could not
keep up with his desire to do just everyday kid things.
On top of the frequent injuries, there was also a
chronic lingering pain. When you talk about the injuries that
(08:08):
you had. Were you also experiencing ongoing pain? And how
would you describe that kind of pain to me? Yeah?
So I dealt with what I would just call it
as a child, as I was having weird pain. If
I were to describe it to anyone, it would be
so difficult because it was so uncomparable to the normal
pain that kind of anyone experiences. My bones were literally aching.
(08:32):
I mean I would lie awake in bed just struggling.
It was awful to do with this underlying chronic pain
was ignored as the doctors focused on the individual injuries
in front of them each time, Fix this sprain, fix
this break, all without seeing the dots connecting each of
these events together. Like why isn't he healing? Right? I questioned?
(08:55):
You know a lot, but it just didn't get me anywhere.
I couldn't the doctor. Would we take him in for
an injury and they would focus on that injury if
they didn't look at the whole picture, and they didn't
look at even his former injuries and things like that
and put it together as a big picture. Laura was
constantly told it was just bad luck, or that she
(09:16):
should wrap Kyle in bubble wrap. The guilt of feeling
like a bad parents started to creep in. She and
Kyle continued their search for answers. Kyle was prescribed accutane
for his severe acne, which appeared to trigger new debilitating symptoms,
symptoms that shed new light on what was potentially attacking him.
(09:37):
I turned sixteen and I was dealing with a lot
of acne, and so I started on a medication called acutane,
which has a lot of serious side effects. It's a
really strong medication, and I had pretty much all of
the red flag symptoms, the ones that are like you
need to stop the medication, called your doctor and all this.
And I was experiencing blackouts. So I went stand up
(10:00):
after sitting down for a little bit, and I would
lose my vision and I would feel like I was
going to pass out, so I would kind of like
stumble and fall to the ground. And at that point
we were like, okay, so something serious is going on.
It was sent to a pediatric cardiologist who ultimately diagnosed
me with postural orthostatic tachycardia syndrome POTS. POTS. Postural orthostatic
(10:23):
tachycardia syndrome, also known as POTS, is an abnormal increase
in heart rate that occurs after sitting up or standing.
So that was my first kind of true diagnosis. But
you know, it didn't really leave me with any real answers.
It still had nothing to do with any of my injuries.
It did not help with my worries of all of
(10:47):
his injuries because they were very not related. That diagnosis,
when you initially were given it, did that make you
hopeful that now you had coping mechanisms to deal with it,
that things were going to change. Honestly, no, it felt validating,
(11:09):
of course for a couple of reasons, but ultimately it
was a very small piece of the puzzle and it
was probably the least important one. It really felt like
a small victory. And of course I I still appreciate
the fact everything that my cardiologists did, but it wasn't enough.
I Kyle. I have to say my heart kind of
(11:31):
breaks for sixteen year old Kyle because you're going through
all of that and then you're dealing with acne, which
I know lots of teenagers deal with, but when you're
dealing with it to the point that you feel you
have no other choice but to go on accutane, you
just must have felt like you were getting bombarded on
(11:52):
every single front in terms of your health. Yeah, it
was so hard to be anything other than my my
coal conditions or my symptoms. It was so I'm not
even sure if I could describe it well. It it
almost just felt like I was I wasn't living, I
was just essentially existing. I was existing to find out
(12:14):
why this was happening to me. You must have felt
so isolated. It became so overwhelming. It showed everyone noticed it,
my my parents, my my brother, my friends. It led
to challenges in my relationships around me. I just lost it.
It was just too much to handle, and so I
(12:35):
had to kind of like take a break from everything.
He's just has had a lot to deal with, all
the injuries and everything, and it just even made getting
around school hard. So I think he just got to
a point where he just needed a break. I had
to stop. I was having daily panic attacks at school.
It felt impossible. I felt like I was against an
(12:56):
impossible battle, and ultimately I had to I had to
just sort it out at home, and so online school
was my next best option. Life started to become a
little easier when Kyle switched to online home school. His
flare ups became more manageable, and he found a little
bit of normalcy and happiness when he started taking acrobatic
(13:18):
tumbling classes from sixteen to nineteen, I stopped having those
strange growth play issues. We assume that they had closed.
So I was doing much better in terms of you know,
at least I was only breaking my ankle once a
year instead of like six times a year. When he
tried tumbling. I've never seen him more happy. He just
(13:42):
that was his favorite thing in the world. To see
him in a place where he just is so happy
and loves it. That's what you want for your kids.
And I thought, oh, maybe this, maybe he'll be able
to do this without so many injuries. And he was
also exceptionally flexible. Oh absolutely, yeah. So with every injury
(14:02):
that you know, of course, they always prescribed physical therapy
and things like that. In the physical therapist could go, well,
you can already do all the things that I'm supposed
to help you get to because he's so he was
super flexible. Looking back at his recovery from injuries growing up,
physical therapist often thought he didn't need much help rehabbing
because he never had a problem with his range of motion.
(14:25):
But everything changed. When Kyle was nineteen, he started experiencing
really bad back pain and went to the chiropractor for
some more treatment. That was really concerned and I, I
believe I started seeing him for about a month or so,
and there was this one time that he did his
(14:46):
adjustments on me and I was like, oh my gosh,
I feel so much better. Being the super active young
man he was. Kyle went straight back to acrobatic tumbling
practice after what he thought was that he a link
chiropractor appointment, But after practice ended, he started to notice
an odd sensation in his legs, almost as if they
(15:08):
were really fatigued or heavy. Can you explain that fatigue?
When you say it was like nothing you'd ever experienced before,
how would you describe it to me? So I try
to explain it. How it feels when you are maybe
sitting on the floor in a strange position and your
leg goes to sleep or your foot goes to sleep,
(15:29):
and the feeling that you have when you stand up
and some of that blood starts flowing back into your leg.
It's that kind of numbness that you get. It's it's
that strange tingling sensation and that was starting to happen
in both of my legs, and it got to the
point where I was just an excruciating pain. My lower
(15:49):
back was just it felt like a knife was being
jabbed into my spine. I told my parents like I was, like,
there's something very wrong right now. I could just tell
there was red flags everywhere. Kyle and Laura rushed to
the hospital. The doctors took an X ray, but everything
(16:10):
looked normal. Nothing on it seemed to explain his excruciating
back pain. Was this tied to the symptoms that continued
to accumulate or was this something new? It was definitely
the some of the worst pain I had experienced, and
it was nerve pain, which was a whole different sensation
from the chronic pain or muscular skeletal pain which I
(16:32):
had been experiencing. And the nerve pain was no joke.
It was brutal on both the mind and bodies. It
was just a lot. So I went and saw the
spinal specialist who ordered an m r I and I
had it the day of which is unheard of. Usually
an m r I takes a couple of weeks to schedule.
So I had the m r I that day. That
I saw him and we're like, Okay, we'll get get
(16:55):
some answers in a couple of weeks. But Kyle didn't
have to wait a couple of weeks to find out
the results. The doctor had a feeling that something was off,
and luckily for Kyle, that doctor read the results the
same night. They were terrifying. They walked up to my
room and said that they had some bad news for me.
(17:17):
I think my mom already started crying, and I was like, oh, ship, like,
something is obviously very wrong. I thought I had maybe
kind of fractured my spine or something, or I'd broken
a vertebrate or something, and they said they found a
large tumor in your spine, and I lost it. It
was I didn't think it was real, and I didn't
(17:38):
think it was a prank, but I was like, there's
no way that this is happening to me. That night
was one of the hardest nights I had gone through. So,
oh my gosh, Kyle. Yeah, so I can imagine probably
(18:02):
one of the most difficult things you and your husband
had dealt with his parents was walking into his room
and telling him that he had a tumor in his spine. Sorry,
That was absolutely awful because we knew there was a
mass We knew it was l ford S one in
(18:25):
his spine, but we didn't know if it was you know,
butinn is a cancer. There was just so much we
didn't know. So that was a very hard conversation. I
apologize no when he told me that, all I could
(18:48):
think of was having to walk into the room and
not having the answers that you want to desperately give
your child in that moment. Yeah, just just because act
of what you said, Because you know, as a parent
and as a mom, you're supposed to be able to
fix what's wrong, and to just come in with this information.
(19:11):
It really wasn't until the next day that we met
with a neurosurgeon that we really knew what we were
dealing with, and that was that was Actually that conversation
was fifty times harder. We'll be right back with Symptomatic,
a Medical Mystery Podcast. Now back to Symptomatic, a Medical
(19:40):
Mystery Podcast. Kyle Thompson had been suffering from a mysterious
illness for almost two decades, countless breaks and sprains throughout
his childhood. A rough fight with the side effects of
accutane a diagnosis of POTS, which still left his worst
symptoms on, explaining frustration that no one seemed to hear
(20:03):
his full story or try to put together all the
pieces in a way that made sense, and now doctors
have pound of tumor on Kyle's spine. I was having
the red flag symptoms of the numbness and the tingling
and the pain. There was obviously some some serious stuff
going on, and so I was pretty much rushed to
the hospital and they got me into my room very quickly,
(20:28):
and they told me that most likely the chiropractic adjustment
caused the tumor to herniate, which means it started to
bleed internally. Three days later, Kyle had surgery to remove
the tumor. The tumor had intertwined itself so much with
his spine that the doctors had to remove one third
(20:49):
of his vertebrae with it. The doctors were luckily able
to remove the entire tumor and found it was benign
but had been growing rapidly. All of that was a
huge which relief to Kyle and his mom, but a
couple of weeks after surgery, something strange started to happen.
They noticed a large bump forming at his incision. We
(21:11):
noticed some weird fluid coming out of it, some clear fluid.
We're like, what is happening. So we went to the
doctor and he said, you have a cerebral spinal fluid leak.
And so I was leaking spinal fluid out of my
incision and I was having horrible headaches. Cerebral spinal fluid
leak headaches are no joke. They're terrible, the worst head
(21:34):
pain I had ever experienced. I couldn't even open my
eyes while I was in bed, it was so much.
Kyle had the spinal fluid drained, but the bump returned
the next morning. He was now at his breaking point.
Through all of his injuries as a kid, the pot symptoms,
the scare with the tumor, and now these spinal fluid complications,
(21:54):
it was adding up to be too much for him.
I was done. I was mentally that was it. I
kind of honestly just like gave up. And I didn't
even want to I didn't want to go. I didn't
want to deal with another issue because I knew that
if the bump was back in the morning, I was
gonna have to have surgery again. On the same area
(22:17):
that I had been recently cut open into, which it
was so mentally taxing to think about that again, think
about the fact that the doctor had once again cut
into an already damaged tissue. Was a very strange feeling,
a roller coaster of emotions, symptoms, diagnosis and treatments, treatments
(22:42):
that felt like they weren't making any significant progress. Even
the successful surgery to remove the tumor in his spine
left lasting side effects, leaking spinal fluid. But these lasting
side effects turned out to be the key clue to
finally finding out what had been plague and cart all
these years. After the second surgery, my spinal surgeon came
(23:07):
into the room after everything had healed, and he said
I had extremely fragile skin and that he had only
ever seen that in patients that get diagnosed with Eilish
Danless syndrome. And I just went, oh my god, I
mean I just got chills. I just had chills again.
(23:28):
I was like, did you recognize something is wrong? And
we were like, okay, what does that have to do
with me? I don't we don't understand. And we started
googling the condition, started learning more about what connective tissue
meant all these things. And my mom and I just
(23:50):
looked at each other when we were researching these things,
and she's like, this is you like this, You are
this condition. You are exactly every symptom that they mentioned,
or or every feeling or all of the strange things
that I experienced as a child. Kyle and Laura went
to see a geneticist who gave them the official diagnosis
(24:13):
of Eiler's damn those syndrome, also known as e d S.
That must have been incredible, because it's like you've been
looking at this puzzle for almost twenty years at that point. Yeah,
you know, it's funny. It felt like one of those
uh in those cheesy detective movies where they put the
newspaper over something in the words match up or whatever.
(24:34):
It felt like that. It was so at the beginning
it was very validating, and then a couple of days later,
I just thought it was comical because it was like,
there's all these pieces just lined up and it it
really just made sense. I just thought back and I
was like, how did no one put this together? Like
all the signs were there for decades and we just
needed the one person to think outside the box and
(24:58):
connect all of these weirds and them together. What is
this diagnosis meant for you and for for Kyle, Well,
it means at least we know. Not knowing was harder.
I think it is a relief. You know there's no
cure for either stand those there's things you can do,
(25:20):
and that's good. But knowing that you're not just crazy
and making things up, and sometimes I want to go
back and say, you see you guys, you know, don't
be so mean. You don't know what people are dealing with.
So it's it's helped in a lot of ways a
bit of much needed relief and validation for Kyle and
(25:42):
his mother. Knowing the illness they were up against, they
were no longer blindly battling this disease. Kyle's current doctor,
Dr Linda Bluestein shares a bit more on the typical
symptoms of e d S. So e d S stands
for Ailor's Danlois syndromes, which are a group of nective
tissue disorders, which basically means that there's something wrong either
(26:04):
with your with your collagen or the different components that
make up your connective tissue, or with the way that
your connective tissue works in your body, so people can
present with different symptoms and signs of these conditions, and
oftentimes we can visually see that people that have hypermobility,
(26:25):
meaning that their joints are very bendy. So interestingly, persistent
pain is something that we really see a lot people
who have e d S. They tend to accumulate so
many injuries and have so much pain coming into their
nervous system that the nervous system itself starts to become
part of the problem, and the nervous system no longer
processes pain signals appropriately. The frequent injuries Kyle had as
(26:50):
a kid, the continuing persistent pain, the flexibility, all of
the symptoms Kyle had been showing for years. It just
took a rig him to notice the fragility of his
skin to be able to put all the pieces of
the E d S puzzle together. So how common is
e d S. It's really hard to say because we
(27:12):
just changed the classification. For a long time, people said
that it was one in three thousand to one in
five thousand people had this condition. A more recent study
said it's probably more like one in five hundred that
had hyper mobile e d S. Kyle suffered through nearly
two decades of pain and confusion that pushed him to
the brink of giving up and just becoming numb to
(27:34):
the world. He seemed to always be injured in countless
casts and walking boots. He was teased because of all
of the injuries, pushing him to drop out of school.
He suffered through a scare with a tumor on a
spine that took one third of his vertebrae with it.
He pushed through all of these trials and misdiagnoses to
(27:55):
still have a positive outlook and energy about him. How
are you so positive? What do you credit the Kyle
you are today? How have you overcome so much? M hmm.
It's hard to say exactly why. I think this has
kind of always been My personality is like very resilient
(28:17):
and not wanting to give up. And I've always been
curious as to the wise of the world, and you know,
why is this happening to me? And what is the
best explanation for this? And I always wanted to figure
that out. I feel like that kind of gave me
the drive to overcome the limitations that these diseases put
on me. Limitations from his symptoms and stigma from other people,
(28:41):
something Dr Bluestein is all too familiar with herself, because,
like Kyle, she struggled with multiple symptoms before also being
diagnosed with e d S. For me personally, I mean,
I went through a very low point in my life
psychologically because nobody believed me, including my own colleagues, and
(29:03):
I had, you know, people say hurtful things to me,
and I stopped bleeding in myself, and uh, you know,
so I know I've been there. Kyle has turned his
life experiences into action, becoming an advocate for people suffering
from similar illness and feelings of isolation that he had
to endure. He's now working with Dr Bluestein to create
(29:24):
a safe place online through social media so that other
people's journeys can be easier than his own. It's unrealsome times,
and I it feels like a fever dream. I still
kind of can't believe that the things that I'm able
to do. And to the people that think that social
media is just social media, it's it's not. When it
comes to these conditions, doctors often don't listen to us. Unfortunately,
(29:47):
a lot of the people in the community are gas
lit and told that a lot of the symptoms are
on their head and that they're they're not truly experiencing them.
And so they've started a community on social media, and
we've been able to have a lot of people in there,
and people are getting answers and a lot of their
questions and concerns are being addressed. Social media is a
(30:08):
lot more than just an app that you scroll on.
It's a community at this point that we've built. What
advice would you have for other parents who might find
themselves in a similar situation. I would say, if it's
your child, even if it's a young adult, even your
adult child, be their advocate because they may not know
(30:31):
how to do it. Speak up, ask questions. Do not
be afraid because someone may have more medical background and
education than you do. Because there's something to be a mom,
a parent, a dad, and you have this gut feeling
and if you really feel like something's wrong, you've got
to push and don't make people feel like you're crazy
(30:52):
or that you're doing anything wrong, because this is I mean,
this is your child, So don't give up. Keep pushing.
To find out more information on e d S, visit
the Eiler's Danlos Society or Eisler's Danlos dot Com, or
listen to Dr Bluestain's podcast Bendy Bodies with the Hypermobility
m D wherever you get your podcasts. My name is
(31:15):
Kyle Thompson and I struggle with a medical mystery for
almost two decades until I was diagnosed with hypermobile Isiler's
Danlos syndrome. On the next Symptomatic, Antoinette is constantly battling
flare ups due to sickle cell disease, but none of
the treatments and therapies seem to help at all. Something
else is at work. There are signs where you feel like,
(31:38):
oh God, you want to die just if you put
out to misery because the pain is so bad. Antoinette
struggles with being ostracized by her friends while pushing through
multiple life threatening trips to the e R hoping to
find an answer to what's been ailing her. Symptomatic A
Medical Mystery podcast is an original podcast. I Heart Radio
(32:01):
are shows hosted by me Lauren Bright Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
is Matt Stillo. Our producers are crra Kaiser and John
Irwin
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