The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?

The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?


So the first thing
I want to tell you is that today’s talk is a
little different, perhaps, than the talk that’s usually
given here in the health library in the sense
that my goal is not just to educate you, though
education you will receive. My goal is really to enlist you. I hope that people here
watching and people who are watching
online will come to see that really
what I am here to do is to call you to service,
because the people who are suffering with
the problem that we’re going to be discussing
today are people who are often misdiagnosed. I’m convinced that
somebody here in this room knows somebody who is leaking. And when I say
“leaking,” I’m talking about a cerebral
spinal fluid leak. And what’s clear
to me is that most of the people who are leaking,
who have cerebral spinal fluid leaks, don’t know
that they’re leaking, and therefore, they don’t
know the right kind of doctor to go to. And so, as I’m going
through my talk and you start to hear about
symptoms like tachycardia– fast heart rate– or fatigue
that gets worse when someone’s upright, or neck pain
or head pain that gets worse when someone’s
upright– if you don’t have those kinds of
symptoms yourself, I would ask you to think
about the other people who you know who have things
that have been called, maybe “POTS,” or maybe
chronic fatigue syndrome, or maybe chronic
daily migraines. And think about sending
them a link to this video so that they can see
if the things that we talk about here today are things
like what they’re experiencing. So I’m asking you not
just to become educated about what you’re
interested in, but think about how you can
participate in the work that we’re doing here to find
the people who are leaking so we can help those people. And this starts with a story
that comes from my own heart. This is my daughter, Alex. And Alex is a special
girl, and she’s a special needs child of mine. Maybe three years
ago she started having unusual episodes
where she would become non-communicative, and
she would cry and express really great distress. And it would last for a week. She wouldn’t eat, and she
had urinary retention. And they would recur and
recur, and we were spending a lot of time in the hospital. In fact, the last
time I was here in this library giving a
talk about neuropathic pain, when I look at that video
I think I look tired and I look fatigued. And I think about where
I was at that point. And we’re doing much better now. And one of the things that
happened during her evaluation is she had a spinal
tap where someone put a needle in her spinal
fluid to look at it. And we noticed at some point
that there was a period of time when she was OK lying flat. And then she would get upright
and she would start screaming. We don’t think that
all of what she had was a spinal fluid leak, but it
seems that part of what she had was a spinal fluid leak. And she got what’s called
an epidural blood patch and then did much better. And that got me reading
about spinal fluid leaks, and reading not a
little bit, but a lot, and really thinking about
where were these patients who had spinal fluid leaks? Where might they
be misdiagnosed? Where might they be hiding
here around Stanford? And that took us in some
interesting directions, and I’m going to share
that with you today. Because after I did all of
that reading– of course, now we have cerebral
spinal fluid leaks in the news with Steve Kerr,
the coach of the Warriors, by report, having a spinal
fluid leak, which I will say, for the record, I
have not seen him. I know nothing about
his medical problem. George Clooney has talked
about, in public interviews, his struggling with
a spinal fluid leak. But really, the stuff I’m going
to talk to you about today comes not only from
that experience with my daughter,
which got me reading a lot more about
spinal fluid leaks, but a piece that was in the New
York Times roughly a year ago. And this piece– there’s
a section in the New York Times called the Well section. And they occasionally
run a little piece called Think Like a Doctor. And this one was called
Think Like a Doctor Swept Off Her Feet. And you can see it’s
dated February 11th. And the challenge was,
can you figure out what’s wrong with a young
woman with a headache that’s lasted for months, who
becomes too dizzy to walk. And I read about
this young woman. And it turns out that
the case itself was written by Dr. Lisa Sanders. And it turns out Lisa
Sanders is the inspiration for the actual Dr. House series. So she’s an internist
who works at Yale. And so she wrote the piece
in the New York Times. And the case that
she wrote about was a 21-year-old woman
with a three month history of intractable headaches now
complicated by severe dizziness and passing out upon standing. And this young woman
reported that her pain started after a
whiplash accident roughly three months before she
was admitted to the hospital. Her headache was worse
when she stood up. She was nauseated
but did not vomit. And she reported
that her headache seemed to start in
her neck but was felt most strongly in the forehead. She had difficulty with
thinking and concentration, and she had dizziness,
but it was only present when she was upright. And it resolved completely
when she was lying down. She also noted that her
left ear felt stopped up. And because I had been reading
and reading and reading about spinal fluid leaks,
I read this and I thought, she must have a
spinal fluid leak. And so I wrote in my
little contribution because they invite
contributions from doctors. And I wrote about why I thought
it was a spinal fluid leak. And then the next day–
the beautiful thing is they put up the
diagnosis, so you get to find out if you were right. And the diagnosis–
in the things that led to the
diagnosis, they reported that her head CT was normal. And a lumbar puncture was
discussed a number of times, but it was never actually
done, possibly because it was technically non-feasible
because she’d had previous lumbar spine surgery. Which we should recognize,
in and of itself, is kind of weird
for a 26-year-old to have had previous
lumbar spine surgery. But they noted that her
pulse was 74 when lying down, but when she stood up
her pulse went to 130. And this was reproduced
in something called a tilt test where they lied her down
on a table and they tilted her. And the tachycardia
led to a diagnosis by a full professor of
neurology at Harvard Hospital– at one of the Harvard hospitals,
Beth Israel in Boston. And she was diagnosed
with POTS, not a CSF leak. She was diagnosed with Postural
Tachycardia Syndrome, or POTS. And I was bothered
by this because I thought she had really described
well, a spinal fluid leak. And what’s interesting
is when you’ve got POTS, while there are some treatments,
what they talk about is really that what this patient had
to do was learn to cope with her symptoms. Over the years, since this
patient’s diagnosis was made, she’s learned a few
tricks to accommodate her invisible disability. She eats lots of salt,
which keeps her blood vessels as full as possible. The idea is with POTS,
unlike a spinal fluid leak, the problem is your blood
vessels aren’t constricting enough when you stand up. And so you’re not getting
enough blood to your head. And so the conception
of POTS is not that there is some
kind of leaking fluid from your spinal canal. The concept with POTS is that
the autonomic nervous system, which is supposed to tell the
blood vessels to constrict, isn’t working right,
either because of genetic factors,
in some cases autoimmune factors,
in many cases, there’s not even a
mechanism postulated. But the thought is
that it’s basically a disease of the
autonomic nervous system. And the thing that I kind
of didn’t like about that was that this young woman also
had a history of joint problems in her temporal
mandibular joint. She had scoliosis, and she’d had
the spine surgery 18 months ago and then a reoperation
three months later. But we’ll come back to that–
why that would be important. So let me give you a little
bit of an anatomy lesson that will help you understand
the distinction between POTS and the other thing,
which is the main part of our conversation today,
which is a cerebral spinal fluid leak. Because what I’m
going to tell you is that I think that Dr.
House and Dr. Freeman actually got the diagnosis wrong. I think their patient
has a spinal fluid leak, and I’m going to
tell you why, and why those other things
like the scoliosis and the temporomandibular
joint pain and the previous back surgery
might actually be important. And to do that, I
first have to teach you a little bit about how our
bodies are put together. So this first image
here is an image of a dissection of the
back of someone’s neck. And what you see is
they’ve taken off the skin, and they’ve taken off
the superficial muscles, and they’ve even taken
off the bones that surrounds the spinal canal. And inside the
spinal canal, what you find here is both
the spinal cord– and surrounding the
spinal cord, which has been cut away right
here, is this bag, the surrounding tissue that
surrounds the spinal cord here. That’s called the dura. And the dura extends all the
way from the base of the skull up here down to the tail bone. And inside that dura
there’s normally spinal fluid that
bathes and surrounds the spinal cord and the brain. And the thought is that
the brain is basically floating in this fluid,
and it acts, in some ways, to mechanically
protect the brain. And it serves some
other functions in terms of allowing
metabolites to get to and from the neural tissue. And I’ve blown it
up here so that you can see it a little bigger. Again, the spinal cord
here and the dura– cut there so you can see
inside this bag of fluid. OK, when people talk about
a cerebral spinal fluid leak or a dural tear
or a dural leak, they’re talking
about a tear in this. This is what it looks
like if what you do is you cut across here instead of
cutting across the back of it. So if you take a
straight cut across here, you see the spinal cord. Some nerve roots coming out
surrounded by this bag of fluid here. And what you’ll see is,
also, not only do the nerve roots come out, but as
they leave the bag of fluid they have to poke
through the bag of fluid. So they have to– in
order for the nerves to get out and
become these nerves, they have to poke
through the bag of fluid. And they have to create a
defect in that bag of fluid. And not only do they create a
defect in that bag of fluid, but the back of fluid,
then, invests and surrounds those nerves so that
what you see out here is much thicker than the little
nerve strands while they’re in the bag of fluid itself. This is another image of
what that dura looks like. And yet another image. And you can see this. The bag here, the dura, really
has some substance to it. It really has some
thickness to it. And it has to be watertight,
because if it’s not watertight, and I have a column of
fluid from here to here, there are no valves in there. So at the bottom
of the sac, it’s seeing three feet
of water pressure. It’s got to hold
that pressure in. Its got to hold that fluid in. So the question is, what
causes people to leak? And there are
really three things, and they’re illustrated
on this slide. The first thing that
causes people to leak is when their connective
tissue is not quite right. Here’s a patient of mine who
came in complaining– actually, she had been diagnosed
with POTS, the same thing that Dr. Sanders and
Dr. Freeman’s patient was diagnosed. And she had headaches
like their patient that was a big part of
the symptom complex. But she had a really
flexible joints and skin. And it turns out, that if you
have connective tissue that’s extra stretchy
and flexible here, then the bag of fluid
that holds your fluid in is thinner and more susceptible
to having a tear or a leak. So one thing that
wound up important in evaluating this
young woman’s headache was looking at her hands
and her flexibility. Her connective tissue
was not quite right. The second thing that can cause
someone to have a spinal fluid leak is when some
calcified bony thing is poking into that bag of fluid. So this image comes from a CT
myelogram of a patient of mine who had the worst
headache of her life. Started smelling a bad
odor in her nose every day. The headache was worse and
worse as the day went on, and she was upright with
prolonged upright activity. And finally, she had a full
on seizure once as well. And so she had these
debilitating headaches, this funny smell, and nobody
could figure out what it was. And we went looking for
a spinal fluid leak. And what we found
was this calcified– she had a bulging disk
in her thoracic spine, and it had calcified
in this funny way where it kind of pokes right through
the dura to the spinal cord. Here’s the spinal cord. And this is in a CT myelogram. We inject contrast
into the spinal fluid, and you see it surrounding
the spinal cord here. And so what you see is that
calcified spike driving right through that. And we’ve seen that in a
number of other patients. We’ll go into that more. And the third thing that
often causes people to leak is a doctor messing around,
doing things to their spine. Whether that’s some surgeon
trying to help Steve Kerr, or it’s a doctor trying
to do a lumbar puncture, or someone trying
to alleviate pain with something like an epidural,
accidentally getting just a little further and getting
into the spinal fluid. And so if you know someone who’s
had an epidural or a spinal tap or has significant
degenerative disk disease at multiple levels,
where one of those disks might have calcified,
where you know someone whose connective
tissue isn’t quite right. These are the kind of people who
need to be seeing this video. And when I say their connective
tissue isn’t right or isn’t quite right, what
does it look like? So here’s a CT myelogram again. But instead of cutting across,
we’re cutting up and down. And what you see here is the
spinal cord in the middle. And here’s the bones that
make up the spinal canal on either side. The white stuff here is
contrast in the spinal fluid. I’ve blown up this
section here on this image here, so that we can get a
look at what’s different here. What do we see
here that we don’t see down here or down here? What we see here, these
kind of lobulated structures that have the contrast
in them, the contrast is no longer confined
just in the bag of fluid. It’s starting to get
into these nerve roots. Leaves in these dilated
bulbous looking structures. That is essentially an aneurysm. It’s an aneurysm of
the bag of fluid. It is an aneurysm
of the fecal sac. And what we call that–
sometimes they’ll call it a meningeal diverticula. Sometimes you’ll call it a
dilated nerve root sleeve. Sometimes they’ll call
it a perineural cyst. But what it really is–
it’s not a cyst in the way that most people
think of a cyst. This is an aneurysm,
a little ballooning out pouching that’s formed
where the nerve has to poke through the bag of fluid. Remember I told
you that nerve had to poke through
the bag of fluid, and it creates a
little weakness? That is what happens when that
weakness causes a defect that grows and grows and grows. And like a balloon
getting blown up, it gets thinner and thinner. And eventually, it can do
what you would imagine. Especially, imagine you’ve
got one of these things, and you get in a whiplash
accident and your head jerks back and forth. Well, this isn’t in the neck. This is down in
the thoracic spine. But imagine that happens. And imagine the seat
belt hits you hard and compresses your
abdominal contents, and you get a
pressure wave going through your spinal fluid. And that pressure wave hits
one of these things, and poof. Now you’ve got a
spinal fluid leak. And people are
wondering why you’re having all these
headaches and neck pains after a car accident. They don’t go looking
down in your lower back. And this is what it looks like
when somebody operates on it. Here, what you see is the spinal
cords running along up here. And it’s a little hard to
see on this television, but where the nerve
root is coming out here, you have this lobulated
aneurysm coming off another kind of
lobulated aneurysm that had developed
a tear across it. So here are other people who
have seen just in the last six months whose connective
tissue, again, you get the sense that their
connective tissue isn’t right. So here’s somebody’s bag of
fluid with contrast in it. And then you see here at
the bottom it trails off the way it’s supposed to. But then there’s
this other thing that’s not supposed to be
here, filling with contrast with poorly defined borders. And I’ve blown it up over
here so that you can see. This has actually
been connected, and where a nerve root is
supposed to come off down here, they’ve developed this
aneurysm dilatation at the bottom of
their fecal sac. And not only that, but their
little aneurysm dilatation has developed an
aneurysm dilatation. And that has three feet of
water standing on top of it. What happens when
this guy coughs? So how do you know your
connective tissue isn’t right? If you’re watching
this video, and you’ve got chronic headaches, and
you’ve got chronic neck pain, and you’ve got nausea,
and you’ve got vomiting, how do you know when your
connective tissue isn’t right? People are often hyper flexible. They’re often double jointed. They’re often finding that
when they are kids especially, they’re more flexible than
the other kids in gymnastics. Or they’re better able to
do the poses in ballet. And they also notice that
they bruise all the time, and they don’t know why
they’re bruising all the time. They can’t even remember
what they bumped into and they’re bruising. Sometimes they’re,
frankly, double jointed. Sometimes wounds have
a hard time healing. We’ve seen a couple of
people with this problem who’ve had early cataracts. It’s not unusual to have
a cataract when you’re 65. It’s not unusual to have
a cataract when you’re 70. But it’s really unusual to
have a cataract when you’re 40 unless you’ve had some
direct eye trauma. But when you see someone
who’s in their 40s or is in their 50s, and they’ve
had bilateral cataracts, something’s not right with
their connective tissue. And if that person also is
complaining of feeling worse in some way, late in the
day or when they’re upright, that’s someone who
might be leaking. This person who
is hyperflexible, when you look at
them– and you may think that what they’re doing is
beautiful– that’s not normal. Not only is it not
normal, you can’t do that if you’ve
got normal genes. Something’s different about
the way she’s put together. And that makes her able
to do certain things, but it makes her prone to other
things like a spinal fluid leak. The other thing that
you’ll find is many people who have connective tissue
differences are rather tall. And if they’re not
tall themselves, they’ve got someone who’s over
6′ 2″ in their direct family. They’ve got a
brother who’s 6′ 3″ or a sister who’s six feet
tall, or their father’s 6′ 4″. ” When you see someone who is
unusually tall– and for me, that means taller than me. If I’m 6′ 2″, and I see
someone who’s taller than me, they’re unusually tall. Someone who’s
unusually tall, who’s complaining of headaches or
weird neurologic symptoms should be evaluated for a leak. All right. Again, how do you know your
connective tissue isn’t right? So here’s what a
CT myelogram should look like in someone whose
connective tissue is right. See how they have these nice
disks in between each bone? And there’s some nice
space that’s uniform. There’s nothing bulging out
into the bag of fluid here. That’s a good healthy spine. This is what it looks like
when someone has bad connective tissue, and they
haven’t been dropped. You can have a spine that
looks like this if you’ve been dropped out of
a third story window, or you can have
a spine like this when your spine just isn’t
built with the same strength that other people’s spine is. When your spine doesn’t
have the same strength, it’s because the connective
tissue is not the same. It’s not right. It’s not normal. You shouldn’t have a
bad disk here and there and there and there
and there, and even up into the thoracic spine with
bulges at multiple sites. That’s not normal. That individual also had
a carotid dissection. This is a problem where the
blood actually sheers along the wall of the carotid artery. Again, not normal, and a sign
that the connective tissue itself is not as
strong as it should be. When someone like
that has nausea that’s worse late in
the day every day, or headaches that are worse
late in the day every day, someone should be
thinking about a leak. Somebody who has multi-level
degenerative disk disease in their neck and their
thoracic spine, their lumbar spine– yes, their spine is
bad, but it also tells you something about their genes. And understanding the connection
between that and the syndrome that makes people feel
worse when they’re upright is a critical understanding. You know your connective
tissue isn’t right if you have an
abnormal heart valve. People with connective
tissue problems will have mitral valve prolapse. They’ll have aortic
bicuspid valves. They’ll have aortas– the main
blood vessel that comes out of the heart will
become dilated, and you’ll get an
aortic aneurysm. Or you can have an aneurysm
in some other blood vessel. And sometimes, again, you
can get that kind of problem that we call a dissection,
where the blood starts to carve into the wall
and spread along it. So that’s how you know if your
connective tissue isn’t right. Let’s talk about other things. So this is further images of
the person who I told you, where you’ve got the
calcium spike poking in towards their spinal
cord with the contrast in the spinal fluid here. And what you see is just
above and just below this. When you see this kind
of calcium spike coming into the CT myelogram,
and then you see this little contrast
that looks almost like it’s spreading along the
nerve root at the level above and the level below,
it’s kind of faint. It doesn’t pop out
and catch your eye. But that constellation where
you see something poking at the dura, and
above and below it you see unusual spread
of the contrast. And you don’t see it
at other levels, that tells you there’s a problem. And you won’t see
that on an MRI. This is what that
person’s MRI looked like. Here, very clear calcium spike
coming in touching the cord. We all kind of worship
at the temple of the MRI. And what you see here
is– this person’s MRI was read as basically normal. There’s a bulging disk
in the thoracic spine. Nothing that would
explain someone having terrible headaches
and awful smells every day. And that’s what it looked like
when you cut down on the MRI. I’ve blown up that one
disk to look at it here. And again, you wouldn’t
think much of that. And the reason I
show you the images, someone out there is
going to watch this video, and they’re going to
think about the fact that they’re having
nausea every day, and it’s worse late in the day. Where they’re going
to be thinking about how they have a headache
every day late in the day. And how it’s gone when they
first wake up in the morning, and no one’s been
able to explain it. And they’re going to have got–
maybe someone even thought of a leak. And they got an
MRI to look for it. And they thought that would
be a good way to look for it, but it’s not. It missed it on that patient
I just showed you about. So bone spurs cause leaks. Here’s someone else who
walked in complaining. Interestingly, he
didn’t have a headache. What he had was confusion. He would get more
and more confused the longer he was upright. And then he’d lie down for a
half hour, and he’d be fine. And he’d get up and
try and work again. And after a couple hours,
he’d be disoriented and start being confused. He wasn’t sure how to
get where he was going. He couldn’t remember things. And this is what the
CT myelogram– again, the test where they stick
contrast into the spinal fluid and do the CT scan. It showed this little
bony ridge here. One of his disks had bulged,
just like the previous woman. And it had calcified
right where it’s poking in at the bag of fluid. And I’ve blown that up here
so you can see it better. So we were suspicious,
because when you hear about symptoms that are
worse when someone’s upright, even if they’re neurologic
weirdness, which is really what he was describing. And it’s worse the
longer someone’s upright, you should be thinking
about a spinal fluid leak. And when you see
something’s calcified that’s poking towards
the bag of fluid, you’ve got to go after that. And this is what it looked
like on the axial cuts, where you cut across this way. And what you see is, again,
this nubbin of calcium poking right in all the
way to the cord itself, through the bag of
fluid, which is here. And just like in
that other patient, you see the contrast spreading
off along the nerve root here. So it’s, again,
the constellation, not just of the bony
osteophyte, which is what we call these things
poking toward the bag of fluid. It’s the bony osteophyte
poking toward the bag of fluid with contrast spreading
along the nerve root in a patient who’s saying,
I’m worse as the day goes on. I’m worse the
longer I’m upright. I’m worse when I’m doing things
where I’m exerting myself or I’m dehydrated– other
things that lower spinal fluid pressure. That’s someone
who has– and this is the critical
thing– that’s someone who has a fixable problem. And that’s really
the amazing thing and why I’m calling
you to join me in helping to find people
who have this problem. It’s awful when someone has
a condition like POTS where they’re debilitated, and
every day is a struggle to get through and the struggle
the longer you’re upright. But it’s an even bigger tragedy
when what they really have is something that can be fixed. Because what was that
other woman being given? She was being given
instructions on how to cope. And don’t get me wrong, helping
people to cope is important. But you’ve got to look for
the things you can fix. Somebody else who walked
in complaining of POTS, they thought she had POTS. And they even thought she
had something called a Chiari malformation, where her
skull supposedly wasn’t big enough in the back part. And so they thought it was
compressing her brain stem, and she had a surgery to
open up her skull base. And only later did we
find this bone spur poking in at the bag of fluid. And if you look really
hard, what do you see here? You don’t just
see the bone spur. What’s this? It’s a little different, right? A little bit of contrast here–
over here– but it’s subtle. You have to really look for
it, and you have to look hard. You have to know what
you’re looking for. So here’s the third way. So now we’ve talked
about two ways that you can have a
spinal fluid leak. One, your connective
tissue isn’t right. Two, there’s a bone somewhere
poking at that spinal fluid. And you can’t see the bone
really well on an MRI, but you can see those bone spurs
clear as day on a CT myelogram. And here’s the third way. Some well-meaning
doctor tries to help you with surgery or with
a needle for something like an epidural
steroid injection, and they accidentally get
into the bag of fluid. And this is somebody looking
on an x-ray camera that accidentally injected
into the bag of fluid, because that bag of fluid
can follow the nerve root out for a couple of millimeters. Now here’s where it
gets complicated. And this is why people
are kind of poorly served by the medical system
with this problem. And why someone like
me needs your help to find the people
who are leaking. And it’s because
most doctors think they know about this
problem, but what they know about is actually wrong. OK? Maybe that’s overstated. What they know about it is true
of a related problem that’s different, OK. So in the late 19th
century in about 1880, they started doing
spinal anesthetics, where they would
inject local anesthetic into the spinal fluid. And this was a great advance
for certain kinds of surgeries. But what they
discovered very shortly after discovering
spinal anesthesia was that when you stick a
needle in somebody’s back, the next day they
often have something called a spinal
headache, which is from the CSF leak that’s created
by the puncture of the needle hole. Now what’s important is when
you have a post puncture headache, which is
a kind of CSF leak, it has a well defined
onset that was just yesterday or last week. So number one, those people
present in the acute phase. They don’t present when they’ve
been leaking a long time. And it turns out in this
condition, symptoms change. When you leak for a little
while versus leaking on and on and on– when
you’re first leaking, when you lie down, you feel much better. When you get up, you feel awful. When you’ve been
leaking a long time, everything up there is a little
bit inflamed and a little bit not behaving right. So when you lie down, you
don’t feel better right away. It takes a long time lying
down to feel better when you’ve been leaking a long time. But most people,
most physicians, are so familiar with the
postdural puncture headache that happens when they
stick a needle into someone and cause a leak. They know– those people, you
lie them down, they feel fine. Stand them up, they feel awful. So if they even think
about a spinal fluid leak, they think, oh, I
can test for that. I’ll just have them
lie down in the office, and if they say their
head still hurts, then they don’t have
a spinal fluid leak. But that’s not true. It’s more subtle,
and that’s why I was talking earlier
about the people who have chronic leaks– it’s not
that they lie down and feel fine. It’s that in the
morning, when they’ve been lying down all
night, they feel better. Maybe not totally
perfect, but better. And as the day goes
on with them being upright longer and longer,
they start feeling worse. So we have something
called a postdural puncture headache, which is
what happens when you stick a needle in someone. Those people have a single leak. You only poked
them in one place. We know that 30%
to 40% of people who are leaking spontaneously–
30% to 40% of them are leaking at multiple sites. Why? Because their connective
tissue isn’t right. So it doesn’t just
affect one site. Often, they’re leaking
somewhere else. And maybe they don’t present
when they’re first leaking. They’re going along leaking, and
they’re kind of compensating. And then they fall
on the stairs, and they start leaking
from a second site. Now they can’t compensate. They can’t make spinal
fluid fast enough. So by the time they
present needing help, they’re leaking from
more than one place. Postdural puncture headache–
single leak, spontaneous leak, maybe multi-site. Postdural puncture headache–
this orthostatic headache. Orthostatic is a
fancy medical word for saying that it’s
there when you’re upright, and it’s not there
when you’re flat. These people have an
orthostatic headache. These people, not so much
an orthostatic headache but a late day headache,
an exertional headache. And the non-orthostatic–
meaning it’s not necessarily controlled
by their posture, but they’ve got a
chronic daily headache. These people, the
people who’ve just had a needle stuck in
them, 90% of those people are fixed with one
epidural blood patch. We’ll talk about what that
is, but it’s basically when you inject blood outside
the bag of fluid to try and clot off the whole. 90% response to
just one epidural blood patch for someone who’s
got a postdural puncture headache. Only a 30% chance of responding
to that first epidural blood patch when you’re
leaking spontaneously. Why? I showed you that
picture where there was a big long line where that
nerve root sleeve had ruptured. Right? It’s not just a point defect. It’s a defect that has
length and conformation that is irregular. It’s harder to close. The natural history of a
postdural puncture headache is well understood
and well described. Most of these things
will heal on their own. Some will require an
epidural blood patch. These are mostly benign. Very few people have
chronic problems from them although it’s well documented
that some people do have chronic problems from these. For some people, these
don’t heal on their own. And for some people, even a
single epidural blood patch is not enough. So somebody who
says, I was fine, and then I had an
epidural for my child. And they accidentally got
into the bag of fluid, and ever since then,
I’ve had headaches. That’s real. The natural history
of spontaneous leaks are poorly understood. We don’t know how many people
who have spontaneous leaks get better. When a bone spur pokes
through that bag of fluid, how many people can
seal over that bone spur and just incorporate
it into the wall of their bag of fluid? We don’t know the
answer to that question. What we know is that
these people are marked by chronic disability. They are suffering and
suffering and suffering. And it goes on and on. These are rarely mysterious. These are often mysterious. Young women are most
at risk for this. It appears that women are
also more at risk for this. These are fixable. These are also fixable, which
is why I am here giving you a lecture today and
asking you to help me find the other people who
are leaking, because they’re out there and they’re suffering. And a system– we have a medical
system that is designed for you to come in and
describe your symptoms and get referred to
the appropriate expert in that field, and then
get a correct diagnosis and correct treatment. But when you have something
that’s pretty infrequent and presents with
symptoms that are so common to other things–
neck ache, headache, nausea, fatigue– these are things that
the medical system– if you have a treatable cause with some
structural problem like I’ve shown you, and it’s
causing those symptoms, the likelihood of
the medical system arriving at the correct
diagnosis is low. And so people who have some
expertise and some knowledge about this have some kind of
fundamental responsibility to go out and look
for these people. And now that you
know, I want you to join me and take on the
mantle of that responsibility in trying to find
some of these people. Because in six
months– in six months since I started
reading about this, we have found 26 people
like this at Stanford. And if we found that many
people, it can’t be that rare. If we’ve found that
many people, you either know someone who
has a leak or you know someone who knows
someone who has a leak. And you should be trying
to figure out who that is. And so, if you’re
watching this online, I’m asking you to take two
minutes right now and send a link to this video to two or
three people who you think have some chronic ailment that might,
just might be related to this. Just take two minutes. Don’t try to make it perfect. Don’t try to research everything
about this before you send it. Just do what you can
do in two minutes. So the symptoms of a leak–
we talked about headache– maybe orthostatic–
nausea and/or vomiting, ringing in the ears. People who are leaking–
something like 70% or 80% of them report that they
have ringing in their ears. If you know someone who has
chronic ringing in their ears, who also is abnormally tall
or has abnormal flexibility, you should be putting
the two and two together. It’s something to
think about and pursue. Neck pain and stiffness,
neurologic weirdness– we talked about
people who are getting disoriented after being
upright for too long. I mean, that’s really bizarre. And fatigue– the people
we’ve been finding and helping with this problem have been
talking to us about the fatigue that they had that
now is better. So I like this. This is the headache,
and I like it because she’s
actually lying down, which is what these people
do to try and get better. The vomiting, the
ringing in the ears, the neck pain, and feeling
like they’re unplugged, both in terms of the
neurologic sense of they feel somehow separated
from their environment, and also feeling like
they’re all out of energy. They’re fatigued. I had a woman
earlier this week who we think is leaking, who
described that sometimes, if she’s been up too long,
she can, for instance, be driving on her way home. And she gets
disoriented and isn’t quite sure how to get home. She’ll be on the
highway, and suddenly she doesn’t know what exit
she’s supposed to take. The MRI findings that you can
see in people who are leaking are well described. And when you take– if you
have an intact skull, what that means is if you drain
one thing out of the skull, and the skull stays
intact, the volume has to get made up
by something else. And so if you suck
fluid out of here– because this is normally
a fluid filled space, and this is normally
a fluid filled space– if you suck fluid out of
here because you’re leaking, the changes you
get look like this. The ventricles,
which have fluid, become a little more small. And the cisterns,
the big fluid filled spaces that surround the nooks
and crannies of the brain, have less fluid in them. This thing called the
“optic chiasm” often becomes flattened,
and in fact, can bend over the pituitary gland,
which itself becomes bigger. The pituitary gland is
like a great big vein. And when the pressure
surrounding it gets low, the vein expands. And when the pressure around
it gets high, it collapses. And so one of the
bellwethers of what’s happening to the
pressure in your head is the pituitary gland. People with intracranial
hypertension– too much pressure
in their head– can often wind up
with a syndrome that’s called an empty sella syndrome,
or a partially empty sella syndrome, which is a fancy
way of saying their pituitary is collapsed. And people who have low pressure
have very robust– sometimes what we call hyperemic
pituitaries, where they’re real bright on the MRI. Sometimes they’re enlarged. And so here’s someone
who is leaking, and so their ventricles
are a little bit small. There’s not as much space there. The pituitary is a
little bit large. And they have this thing called
pachymeningeal enhancement, where they have this
arc of bright tissue over the surface of the brain. In contrast, this is them
after they’ve been patched. The ventricles, just
a little bit bigger. The pachymeningeal
enhancement went away. The pituitary got smaller. And this is what you see
when you’re looking not front on but down the side– what’s
called the sagittal view. And what you see is when someone
has a leak, which is over here, the fluid in front of this
part of the brain stem called the pons is reduced. And the fluid up
here is reduced. And you can actually see the
cerebellar tonsils, which are these things, start
to kind of come down and poke their way
out of the skull. When there is a normal
amount of fluid, the cerebellar
tonsils stay up here. The fluid in the
prepontine cistern, which is the fancy way of saying
the fluid from the pons here, should be more robust. And there should be
more fluid around here. Similarly, the
pituitary gland here should be a little bit smaller
than the pituitary gland here. And in real life, what it
looks like is like this. So here’s someone who
presented with a leak– not one of my patients,
a published patient. And what you see is this
whole bottom part of the brain looks like it’s been
kind of compressed into the bottom
part of the skull. So we call that staging. And the pons has
become very flat, and the tonsils have become so
that they’re poking out there. That is a classic appearance for
a cerebral spinal fluid leak. But what I want to
tell you is that we have been finding that
a lot of the people who have a headache that can be
fixed with an epidural blood patch have MRIs that are
much more normal than that. And so one of the
most dangerous things that can happen to someone
who’s got a spinal fluid leak is they get an MRI
that’s read as normal. And often, they’re much
more normal than these. These are MRIs of people who
are really extreme leakers. And it’s clear that most
people are not extreme leakers. This is the MRI of someone who
we fixed with an epidural blood patch. This MRI was read by a Stanford
neuroradiologist who is a world class radiologist, as normal. Now the truth is, it
doesn’t show the things that this MRI shows. There’s a lot more fluid
in the fourth ventricle here than there is here. There’s a lot more fluid
here than there is here. But for this young woman
there wasn’t as much fluid here as she needed. And she was someone who had
been diagnosed with POTS, and who subsequently got an
epidural blood patch, and then two more. And then went back to work and
stopped being on disability. And this is what the published
CT myelograms, showing a leak, show. They show a cord here, contrast
around it in the fecal sac, some coming out here. Often, if they’re profound
leaks, they’re way out here. But again, a lot of leaks
may be more subtle than that. This is what a spinal fluid
leak is supposed to look like. But the truth is, if you have
a leak where it’s not obvious that there is some
kind of contrast here outside a well
defined fecal sac, do you send in your subtle
picture to a journal? The journal may not take it
because, in fact, they may say, I’m not sure that shows a leak. So what they do is, you
send in your things that are obvious to the
journals, and everyone becomes educated about the
obviously leaks, but not the subtle leaks. Here’s another thing of what the
leak is supposed to look like. And another. And another. But this is one of the
people who we fixed with an epidural blood patch. It really doesn’t
look like this at all. Or this. You could say it kind of
looks like this published image, where you’ve got the
cord and the bag of fluid and a kind of trailing
out along the nerve root. So here’s a CT myelogram,
again, read by a world class neuroradiologist as normal. Because they said, well,
sometimes you can see this. Sometimes you can see this. And that’s the most
disturbing thing of all, because I think when they say,
sometimes you just see this, I think you’re just seeing
this because more people are leaking than we realize. Labs– what kind
of labs can you do to help confirm or
contribute to the diagnosis that someone is leaking? Well, there are a couple things. One is that if you’re leaking
and your brain is actually having just a little
bit of traction on it, this thing here, which
is the pituitary gland, is connected to the rest of
the brain by a real thin stalk here. And if there’s just a little
bit of traction on that stalk, the brain stops telling the
pituitary gland what to do. And you get a particular
kind of syndrome called hypothalamic
pituitary dissociation, which is a fancy way of saying
the brain isn’t telling the pituitary what
to do anymore. And interestingly, when you
stop telling the pituitary gland what to do, most of the things
the brain tells the pituitary what to do are positive things. It tells the pituitary, make
thyroid releasing hormone to tell the thyroids to
make more thyroid hormone. Or make corticotropin
releasing hormone to tell the adrenal glands
to make more cortisone. But one of the things that
it tells the pituitary to do, it’s telling the
pituitary not to do. It’s telling the pituitary,
don’t make prolactin. The brain is normally
telling the pituitary, don’t make prolactin
because that’s a hormone that you only need made when
you’re breastfeeding a baby. And so, when this stalk gets
disrupted because someone’s leaking, sometimes those people
have an elevated prolactin. And over the last
six months as we’ve been looking at people who
are potentially leaking, roughly one in five have
an elevated prolactin. The other thing is, again,
if you drop the pressure in the head because there’s
all these different veins in the skull– if you drop
the pressure in them– inside of the skull– now the
veins expand because there’s a big pressure gradient
between the normal pressure inside the vein and the reduced
pressure inside the skull. And as those veins
expand, they actually start to have some
fluid from the veins steep across the veins
into the spinal fluid. And when that happens,
people’s spinal fluid has just a little more protein
in it than it’s supposed to. And so, every person who
we send for a CT myelogram now, not only do they
get their CT myelogram and have the contrast injected
into their spinal fluid, but before we do that
we do two things. We measure an opening pressure. We actually measure the
pressure in the spinal fluid, and we send some of
that spinal fluid to the lab to have them
look for elevated protein. And so far the
elevated protein has been the most consistent
objective thing that suggests to us that
we’re really on the right path and that they’re leaking. Treatment– what can
you do for these people? So there’s something called
an epidural blood patch. And an epidural
blood patch starts with getting blood steriley. So here’s someone who’s about
to undergo an epidural blood patch. And their arm is getting prepped
the way you would normally prep a surgical site. You’ve got to do
this very steriley. And then after we prep
out the arm, we go ahead and we put an IV in
one of the big veins, and we attach that
IV to some tubing. And the beautiful thing about
attaching it to that tubing is now you can just put an
OPSITE or a Band-Aid over that. You don’t have to worry about
the sterility of that anymore. You cover that up. Now you’ve just got to keep
the other end of the tubing sterile, which means
now you can turn this patient over and
start working on putting your needles into their back. And you’ll still be able to
get sterile blood from them. So what we do is we then hand
off that tubing to someone else who takes it and
keeps the end of it, which has a syringe on it, sterile. And now they’re lying face down. That syringe is going to get
put on that table to wait. And now that they’re
face down, they start to have a needle
put in their back. And the needle is getting put
in their back in this funny way where you have a
syringe attached to the back of the needle. And what he’s doing
with his finger here is he’s actually putting
a little bit of pressure on the air in here. And it turns out, as
he’s putting that needle through the ligaments
in the back, he’s coming in
from the skin here. And he’s not going to be
able to push a lot of air through that needle as he’s
coming through these ligaments. And then when he pops
through that last ligament into this space, which
is labeled number four, suddenly the air is
going to go easily. And he’s going to know
he’s in the epidural space. So what this image
is showing you here is the spinal cord is
here– number five. And the bag of fluid
we’re seeing edge on here, that’s number three. The spinal fluid is
inside the bag of fluid. The epidural space is
out here in number four, outside the bag of fluid. OK. And you could see how,
if you had a tear here, injecting blood in this
space so it could clot over that tear might be exactly the
thing that the doctor ordered. That’s a little schematic of the
same thing I just showed you. And so once the
needle is in place, you come back to that tubing. You suck all the fluid
out of the tubing until you’re getting blood back. You aspirate that blood
into another syringe here. Fill it up, give it back to
your colleague who has just put the needle in the
epidural space. And now all that blood
gets injected back into the epidural space where
you think they’re leaking. And you can see it spreading
here, that dark line, as we mixed some
contrast with the blood. And this is what it
looks like on a CT scan. And this is where
you can see how you might have some challenges. Here’s a CT myelogram, again,
the thoracic spinal cord. You’ve got the bag of
fluid surrounding it. Remember that
osteophyte that was poking through the front
surface on that other image I showed you? Here’s the epidural blood patch. You could see how that might
have a hard time making its way all the way around
to get to there when this is how much blood they put in. So sometimes you have to do
higher volume blood patches. Sometimes you’ve got
to do fancy things like put the needle
in from the side here to get it to the
front, what’s called a transforaminal approach. Here’s where they tried
to do that for a patient. Where they took
a needle in here, and they injected something
called Fibrin sealant. So this is what we do when
someone’s blood patch doesn’t work. So if the blood is not
enough to fix the problem, they may inject some
Fibrin glue in there to try and fix the problem. And that seems to work for some
people whose epidural blood patches don’t work. And we tried that for this
patient with the calcium spike. With our neurosurgical
colleagues in the cath lab, we came in from the side,
put a needle in like this, and we injected some glue. And that glue is
here spreading around like this, this darker area,
spreading around, getting narrower and
narrower and narrower and coming to the
base of that spike. And you know what? It did not work. And so she didn’t get better
from an epidural blood patch, and she didn’t get better
from the lateral placement of some Fibrin glue, and so
she went on to get surgery. And this is an image of someone
else not, the same person, getting surgery, where these
are actual metal clips now that have gone in
to clip off some of those aneurysmal dilations. So who were these images today? This MRI that was
read as normal, who had this CT myelogram that
was read as normal, who also had this on her CT
myelogram that was read as a variant of normal–
this is what she looks like today after her
epidural blood patch. She went from being essentially
disabled and on Disability to working full time and
actually hiking and climbing. And she’s in the back
of the room today. And this bone spur that
was causing a spinal fluid leak– that was read as not
showing a definite leak. And this was read as not
showing a spinal fluid leak. And this MRI was read as normal. After an epidural blood patch,
this is what he looks like. He’s gone from being–
this is the gentleman who was disoriented when
he was up for too long. He’s gone back to
working full time. And about a month after we
did his epidural blood patch, he sent us this image because he
works as a gamekeeper in South Africa. And there he is
with a lion, walking and doing his job again. The big clue for him,
despite his normal MRI and CT myelogram, was that
he was six foot six. So he was six foot six and
complaining of the fact that the longer he was upright
the more confused he got. And that told me to
go look for a leak. And this, with the bone spur
poking in with some contrast, she’s the woman
who had previously had her whole skull opened
up to relieve a Chiari malformation, one of
the common misdiagnoses when people are
actually leaking. After we patched
her, well, there is her MRI, which
was read as normal and not showing any leak. And that’s what she looks
like after being patched. And this is the
other patient who had the calcium spike,
who we tried to patch and who wound up
requiring surgery. And her MRI that
was read as normal, and what she looks like after
surgery to fix her leak. And this is a young woman
who I didn’t show you images of today, with another
MRI that was read as normal, and what she looks like
after being patched. And someone else whose MRI
was read as being normal, and what she looks like
after being patched. And someone else whose
MRI was read as normal, and how she looks
after being patched. And these are just the
people that I’ve diagnosed in the last six months. People who walked in, people
who I stumbled across, who undoubtedly, were coming in
front of me before my daughter got sick and I started reading
about spinal fluid leaks. And now, now that I
know what to look for, I’m finding these people
and I’m patching them. And that means that they’re
not as rare as people think. And so you have to help me. You have to help me because
those people whose pictures I just showed you were
diagnosed with POTS and Chiari malformations. And Ehlers Danlos, which
is a connective tissue problem, which is true. And Tarlov cysts,
and chronic migraine, and chronic fatigue syndrome. And one came in and told
me, I’ve got fibromyalgia. And one even had Parkinson’s
disease symptoms. We’re not sure if the one
who had Parkinson’s disease symptoms is really
leaking or not. We’re going to get to
the bottom of that. Robert Kennedy said, “It’s not
enough to understand, or to see clearly. The future will be shaped in
the arena of human activity by those willing to
commit their minds and their bodies to the task. And so I’ve committed
my mind and body to the task of
finding people who are leaking, looking for them
where they may be hidden. And as part of that,
I have reached out in the last six months to the
Marfan Clinic here at Stanford. Marfan’s disease is a disease
where your connective tissue isn’t quite so strong. And I’ve said to them, anybody
who walks in who has a headache or who has chronic
nausea, I want to see them and evaluate
them for a leak. And I’ve called over
to the POTS clinic and said, hey, anybody
who comes in with POTS, who has headache as
part of their syndrome, I want to see them. And that’s being fruitful. This person is someone
who I called when I got her name from the POTS clinic. And I got it on a Saturday
when I was babysitting my kid, and I brought her to the
playground at the McDonald’s. And I called her from the
playground at McDonald’s on a Saturday, and I said,
look, you don’t know me. And I know this is
going to sound crazy, but I think you don’t
really have what you’ve been diagnosed as having. I think maybe, just maybe
you have a spinal fluid leak. And sure enough,
that’s what she had. So if I can find these
people, and so many so fast in just the last six
months, I think if you’re here and you’re listening
to this, or if you’re watching this on YouTube,
again, you either know someone who’s
leaking or you know someone who knows
someone who’s leaking. So I ask you to
spread this message. And if you’re watching this
video, spread this video. And that’s it. Thank you very much. [APPLAUSE] Questions? Somebody who has
headaches and may be tall, who gets Botox injections,
do they have the risk to get puncture and [INAUDIBLE] ? So the question was, if someone
who is tall or maybe has other signs that their
connective tissue isn’t quite right, and they’re getting
Botox for headaches, are they at risk of
having a dural puncture? We don’t think so
because the dura is inside the skull, number one. And when they’re doing
the Botox injections, they should not be
getting close to the dura. But the bigger
question is, is someone who’s getting Botox for
chronic headaches, who’s tall, are their chronic headaches
and their tallness related? Are they related by the fact
that their connective tissue is different? Someone who’s having
chronic headaches, who’s particularly tall,
should be thinking about, well, if I spent–
let’s say they’re getting headaches every day. You should have that
person lie flat for a day and see if their normal
2:00 PM 2 headache comes on. If they lie flat
for a whole day, and they find that it’s
the best day they’ve had in the last three or
six months, they’re leaking. Thank you. You’re welcome. If somebody had a pons with
white spots and acromegaly that improved over
time, could they have a spinal leak
because of the pituitary being large like that? So the question is, if
someone had abnormalities seen on their pons, on the
imaging, and had an acromegaly, could that be caused by a leak? The thought is that a spinal
fluid leak and its effects on the pituitary
should, if anything, cause levels of
growth hormone to be a little bit lower, possibly. So you would not
expect acromegaly to come from a
spinal fluid leak. We have seen other
pituitary disorders. So we’ve seen the
prolactin be high. We’ve seen people
who are diagnosed with hypothyroidism, which
is not so terribly uncommon. But we’ve seen people
who had hypothyroidism that wasn’t because they
had the usual case, which is Hashimoto’s thyroiditis,
but actually they were leaking. And when we patched them,
their thyroid hormones started to come up. Is a feeling of tightness on
your head or [? gapping ?] is that ever a symptom? Many people describe
the head pain as pressure or tightness
or a vice-like sensation. And again, if you or someone
who’s watching is wondering, could the sensation that
I’m having in my head– I’m getting this
pulling sensation in the back of my head. I’m getting a pressure sensation
in the back of my head. I have a vice sensation. If it’s worse late in the
day, that’s suspicious. Is it gone when you
wake up in the morning? It’s suspicious. If you spend a day lying
flat, is it all but gone? Very, very suspicious. So one of the easy things
if you want to know is this something
worth pursuing, if you’re having those kinds
of symptoms, if you spend the day flat, are they gone? OK. Other questions? When you’re talking about
abnormal connective tissues, I have a friend who has an
extreme case of cerebral palsy. And she gets headaches daily. Would the tightness of the
muscles and connective tissue be a cause for a spinal leak? The tightness of the
muscles and the tissues would not be a cause
for a spinal fluid leak. However, people who have
cerebral palsy fall down a lot, and falling down
can cause a leak. People who have
cerebral palsy sometimes get lumbar punctures
for diagnostic studies. So the have a needle
stuck in them. That could be a
reason for a leak. People who have cerebral
palsy, and it’s severe, often have had back surgery. And as we hear in the news
about the coach of the Warriors, back surgery can cause a leak. So again, if you’re seeing
someone who’s having headaches, and they’re there
most days, and if it’s gone when they wake up in the
morning after they’ve been flat for eight hours,
or if they lie down and it feels better after
an hour of lying down, or if it’s much worse late
in the day, be suspicious. And test it. It’s easy to lie down
flat for a day and see, are your symptoms largely gone? If you lie down flat
for a day, and it’s the best day you’ve had
in the last three months, then somebody should
really be evaluating you. They should be doing the
MRI, brain and full spine. And they should be
doing the CT myelogram. The MRI that’s read
as normal– and if you take one thing away from
all of these people whose MRIs were read as
normal– don’t be stopped by an MRI that’s normal. If your symptoms are
gone when you’re flat, you need CT myelogram. And when they’re doing
the CT myelogram, they should be measuring some
of the fluid for the protein content. And if the protein
content is high, you’re on the right track. Or at least it’s worth
investigating seriously with someone who knows. And the doors here
at Stanford are open. So is the blood patch–
how long does it last? Sometimes it can
last a few months, and then someone
starts leaking again. Once they get past not
having symptoms for a year, the thought is their
likelihood of recurrence is very low over
the next 10 years. So when you patch
someone, especially if their connective
tissue is not right, the thought is that
this is something that they’re at risk for. But the truth is, let’s
say you had these symptoms and we patched you,
and your symptoms went away for three
months and then came back, now we know what it is. Now we know what to do for it. That’s a whole much easier
kind of problem to deal with. You patch that, and you move on. And the truth is for most
people we think what happens is you patch the leaks. And then they do well
for a number of years. And they slip on the stairs,
they start leaking again. So you would
[? go in ?] for testing those people who have headaches
during the day, to lay down. The lay down is with
pillows or without pillows? The question is referring
to my recommendation that people who wonder, could I
have something like this– yes, spend a day flat. And when I say flat, it’s
best done without a pillow if you can tolerate it. We know people who
have postdural puncture headaches– the thing where
we cause it with a needle. Many of those people will
say that even one pillow makes their symptoms worse. So you really want to be flat. And if you’re going to
base decision making on it, you really want to give
yourself the best trial. So you should really
try and be flat. And you should try and
be flat all day long. You pick a Saturday and you say,
you know what, on Saturday I’m going to listen to
audio books on my iPhone or I’m going to read a book. And I’m just going to stay flat
all day, and I’m going to see, am I really experiencing that
throbbing headache I always have at 4:00 PM. And if at 4:00 PM
you feel just fine, there’s a likelihood that
there’s a big problem. And you’ve got to start
getting looked at for a leak. So now I need you
to explain to me, if you stand and you
leak, but if you are flat, you’re [INAUDIBLE]. So it’s clear–
so let’s say we’re looking– I’m going to pull up
an image to help explain this. So here’s your normal
spine and that bag of fluid that goes all the
way up to the skull. You know the sensation– when
you dive into a swimming pool, and you try and pick something
off the floor of the swimming pool, how the pressure– you
feel the pressure in your head as you go down and down. It gets more and more pressure. That’s because you have a column
of fluid up on top of you. Here, down here
low in the spine, when you’re upright the
bottom part of your spine here and the fecal sac is seeing
the same kind of pressure as if you were in a
three foot swimming pool. So if there is a little hole
or a little problem here, or you have something
like this– if you have– do you remember the
image I showed you where there was this
big kind of dilation at the bottom of the fecal sac? Imagine you’ve got that. When you’re standing upright,
that’s under a lot of pressure, and it’s going to leak. When you’re flat,
there’s no pressure because the column, instead
of being three feet high is now two inches high. So it really doesn’t leak much. And that’s why people
don’t have as much symptoms when they’re flat. Thank you. When you say the doors are
open, do you have studies that people can enroll in? Well, at this point we’re
not looking to do research. So I’ve written, I don’t
know– 20, 25 papers. And I’m not sure that anybody
has really read my papers, or that it’s really helped
one of those people. What I know is the last
time I gave a talk here on neuropathic pain, 3,000
people watched that video. And that’s why I’m here today. It’s because I figure if I draw
a circle around me that’s maybe 20 miles in
diameter, there’s got to be– if I found close to 26
people in the last six months looking for leaks, how
many people are living within 20 miles of where we are
right now who are leaking right now? I’m trying to get the
message to them that I’m interested in helping them. Not to do a study so
I can write a paper. So that I can help
them be back at work and enjoying life again. Right? So I’m doing things a
little bit differently. I’m not writing papers about
this– at least not yet. I’m doing clinical care. And so it’s not that
there’s a research study. It’s that there is a
clinical enterprise that is looking to help
people who have this kind of fixable problem. And so I’m trying to
find them, and that’s what this is about today. I want to make a comment. I happen to be one of
Dr. Carroll’s colleagues. And the reason this is so
important– what Dr. Carroll is doing reaching out
through YouTube– is because there’s such
a profound ignorance. And I was one of
those people who was profoundly ignorant,
and actually skeptical, when Dr. Carroll was
starting talking about this. And most of your
physicians– I don’t care how brilliant they are. In fact, Dr. Carroll
pointed out people who are world
class radiologists, or some of my colleagues
who also happen to be pain doctors but
primary care physicians– so if there is such
a profound ignorance, and all these people who
watch this YouTube may go to their local doctor. And your doctor says, oh, Dr.
Carroll is probably crazy. And that’s why it’s so
important to reach out. I had a case recently
that was sent to me by one of– actually, my
professors who taught me at Stanford in the 70s. And myself and Dr.
Carroll and this professor were all there, and the
anesthesiology department. And he’s older than I am. And he put in what’s
called an intrathecal pump into a chronic
pain patient, where it’s a pump that goes into
the spinal fluid space that is supposed to give you opioids
into that space to treat some chronic pain problem. It turned out it didn’t
work out that well, and that patient
had it pulled out. And she had a lot of issues. And everybody was
trying to blame the patient for these
bizarre symptoms that nobody could understand,
because at some point this pump was pulled out. And she was sent to me just
to manage some medications. And I wasn’t convinced that she
was making stuff up or weird, even though it was presented
to me by a former professor who I thought was quite bright. And as I started thinking
about it, I said, this lady has a leak somewhere. And I sent her to
Dr. Carroll, and he can describe, if you wants,
what’s been going on, but it’s all heading in a
very positive direction. So if I’m thinking
all these people who are Stanford doctors–
where I’d say, at least above average in our
experience and knowledge– don’t get it. And I was skeptical
about some of the things that Dr. Carroll was doing. And I’m beginning to think now,
back to a lot of my patients who I took care of with
POTS, that I never really was able to help them in any way. That’s why it’s so important. I think that Dr. Carroll’s
approach in clinical care– I’m reaching out because
there are a lot of people out there. Because of the
profound ignorance– it doesn’t mean these
doctors are stupid, but we just were not educated. I’ve done hundreds of
blood patches for the cases he described after epidurals
that other people sort of put in the needle too far. And I said, god, that
doesn’t jive with that. But it turns out there’s
something really here. And I think that’s why this
whole thing is important, and I think his
approach is novel. And had I not come
to this lecture, I wouldn’t have
thought how important that is because it is. It may be the only
way of reaching out. Do you know somebody? Yes. Because nobody else will endorse
that there’s a real problem. I’m convinced that most
doctors know enough about this problem– exactly
enough about this problem– to incorrectly tell a
patient, you’re not leaking. Because they’re so familiar
with that postdural puncture headache thing, and
they’re so educated that the MRI is the end
statement in diagnosis that when they think of
it, and they get the MRI and it’s normal, they stop. And that then begs
the question– well, hasn’t somebody published
that the MRI is not such a great tool for this? No. In fact, just the opposite,
because all of the studies that have looked at
the sensitivity of MRI for finding this
kind of thing were written by neurosurgeons
who operate at tertiary care centers. You don’t get to see
those neurosurgeons and get treated for a leak
unless your MRI shows a leak. And then they do a case
series, where they look back at their last 50 patients and
they say, 90% of those patients had MRI evidence of a leak. Therefore, the MRI must
find 90% of leaking cases. But that’s circular. Cases where there is clear
MRI evidence of a leak get to the neurosurgeon, who
then writes the paper saying, all of my patients had
MRI evidence of a leak. What about the people who were
referred for a possible leak that they didn’t see because
they didn’t have any imaging evidence that they had
an operable problem? Or what about the people who
they saw, but they didn’t operate on because there was
no MRI evidence of a leak, so they sent them
home even though they said they had terrible
pain when they stood up. It’s circular. And it begs the question–
so if, in fact, an MRI is 90% successful
at finding leaks when they’re there, how is
it that I have in six months found all these people who
can be improved with a blood patch, who’s MRIs
were read as negative? And their CT myelograms were
read as not showing a leak. But almost all of them
had something funny. So they had this. Or they had that. Or they had that. It wasn’t that all their
imaging was stone cold normal. Their imaging showed things
that you could think, yeah, I could see how that would leak. And showed things that people
might even think were a leak. But their MRIs were normal. So I’ve either got to be the
luckiest person in the world to find all these people
with CTs with hard evidence of things that could cause
leaks, who nonetheless have MRIs read by world class
radiologists that are normal. If they’re normal– if
these radiologists are saying the MRI is normal,
the MRI really is normal. It’s not that they’re
not reading it correctly. It’s that it really is normal. So either I’m the
luckiest person in the world that keeps finding
people who have positive CTs and can be fixed with
an epidural blood patch, but their MRI is normal. Or really, MRI is not such
a good test after all. And that’s the first paper
I hope to write about this. When we have enough people
who we fix with epidural blood patches, that we can
look back and say, what percentage of
people who are fixable could be detected with
an epidural blood patch– excuse me– what percentage
of people who are fixable could be detected with MRI? And that’ll provide us with
a very different number than looking back at the case
series of people who I operated on for spinal fluid
leaks, but I only operate on people with MRI
evidence of spinal fluid leaks. Different ways of
looking at the world. And if you believe that
the MRI is a good test, and then you believe
that only the people who have MRI evidence
are leaking, then you can believe that this
is an uncommon problem. And then you have to
come up with some reason why everybody’s getting better
when we do epidural blood patches, but they
didn’t get better when they were given medicine. And they didn’t get
better when they were given joint injections,
or facet joint injections, or Botox injections. It’s not just that
they’re the best placebo responders in the world. They got lots of things that
could have elicited a placebo response but did nothing. They got epidural
blood patches that caused them to get better
and go back to work. One more thing that
makes me think about it, is every now and then in my
thousands of blood patches I may have done, there was
a couple who never got well. What if they were one of these
people– just like the patient I sent to you– all
it took is that leak. And then all these other
places start leaking. And maybe that’s why
those were the people we know who had an
epidural for a c-section, and they never really
got better after. What Gabriel is referring to
is a very interesting case that we have, which
is– so a woman presented to him with very
strange neurologic symptoms. She’s saying that when
she tries to read, she can’t read because
all the letters look like they are up and down. She is profoundly fatigued. She has terrible headache,
terrible neck pain, but all kinds of
neurological weirdness, too. And she had previously
had an intrathecal pump that had been taken out. And Gabriel, quite
reasonably, thought, maybe she’s leaking from that pump. So she sent them to me. And I looked at
her, and I couldn’t explain some of her symptoms. But I thought, you know
when you’re leaking, sometimes you have
brain dysfunction, and that can present
in very strange ways. But I said, you know
what, because 30% to 40% of people who are leaking
are leaking– at least people who are leaking
chronically– are leaking in more than one space. We did a CT myelogram on that
patient, and what we found was she had profound aneurysmal
dilations at multiple nerve roots. Which raises the question,
was the intrathecal pump put in, in part, because she
was having intractable neck pain and head pain and
things like that? And he was thinking about a leak
for the right reason– because of her symptoms and because
she had a known incident, a known trigger
for causing a leak. But this may have been someone
who was actually leaking even before the pump was put in. And that’s when things
get really complicated. So what we found is that we
don’t have to just patch her where her pump was. We’re patching her
at other places, and she’s getting better. She’s not yet fixed. That’s why you don’t see the
picture of her with the thumbs up. I only get the picture
with the thumbs up with people who are
telling me that they’re fixed. And in the interest
of full disclosure, she recently reported
some residual symptoms. But the proof is in the pudding
that the patient got better. Yeah, the patients. And she’s not crazy. Yeah. –is getting better. Yeah. And whether we fix her– you fix
her or not– that blood patch that you did recently,
and she comes in like a different human being,
that’s not placebo effect. So is the CT myelogram
a new technology? No. The CT myelogram
is old technology. And because it
involves radiation, and because it involves
a needle in the back, people are so afraid
to do the CT myelogram. You know what? The CT myelogram shows
those calcium things much better than the MRI. Because you’re actually putting
contrast into the spinal fluid, you have a much better
chance of seeing an aneurysm of the fecal sac. Because you’re sticking
a needle in there, you can really actually measure
the spinal fluid pressure. And because you’re getting
some of that spinal fluid, you can look at it
for elevated protein. It is the most underutilized
test for people who are thinking,
could I have a leak, because we’re so
afraid to send someone to get a needle in
their back one day when they’re
suffering every day. Thank you very much. For those people who
are out there who are watching this a year
from now, two years from now, three years from now, you can
come find me at the Stanford Pain Management Center. And if you’re 3,000 miles
away or 6,000 miles away, and you want to ask
me a simple question, send me an e-mail to
[email protected] Now how can we access this film? You will be able to get this
on the health library website.

99 Replies to “The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?”

  1. How good would the CT be without the spinal fluid contrast? (Yes, I think a needle in the back could go wrong, has a risk)

  2. I find this extremely interesting. My family has a problem with too much CSF. I have Intracranial Hypertension (Dx at 18), my father and his mother both have/had Adult Onset Hydrocephalus. When my father had his first spinal tap as part of his dx process. His pressure was very high and then he had low pressure headaches, meaning a leak that needed a blood patch. When he had the blood patch he felt like he heard it filling his ear (he has had ear problems most of his life). Post blood patch he started having high pressure headaches that he had not been experiencing before this ( his symptoms had been that of normal pressure hydrocephalus, so unlike me he hadn't had these high pressure headaches). I believe, looking at what he experienced, that he had a long term leak in his ear that helped compensate for his high CSF pressure and that when he got the blood patch it treated both his spontaneous leak and his spinal tap leak.

  3. This is me… It's been a month and a half. Wow i need to see this doctor because my neurologists have been clueless!!

  4. i am this person. I have JHS, chiari with srynx, chronic headaches, hyperreflexia, fatigue and blackouts . occasionally often ear ringing.Spine issues. i have had 4 c sections. I have been diagnosed with adhd recently. I need help.

  5. Thank you for this video. My neice's husband, age early 40's who lives in UK has just been diagnosed with CSF and my niece is in the process of trying to get a handle on understanding this. I have shared this video with her.

  6. Hello this is so me I have pots and possible Eds. I believe it got worse after I had an epidural. Anyone know what kind of specialist in Australia (Melbourne) I should see to test for spinal leaks?

  7. Ive suffered this for 26 years after sever truck wreck ive been told its a CFS leak Dr.s have seen the fluid now ive been taking meds ive saved over 26 years but im all most out.I keep getting passed around and at times just ignored two of my lost abilty to help me Dr Steven Singer had to retire. im despret for help I was 6' 4" Ive had a mylowgram and 3 blood patchs 5 spinal taps but I know its turned to be more intermedit leak out my nose.
    Im 62 and no longer have the strength.
    Im so tired weak and to tired to fight it any more.
    MRI normal in the past Ive been laying flate 27+ years I have no life any more to speak of.
    I'm told My Brain is being squished under its own weight bye some yet other's say or think its PTSD and with that kind of help I get no were again. I'm trying to get to see Dr. Stobey Nero and pray he will help me and find this leak. give me the meds to fight this and fix me then get me off them slowly no more rapid detox PLEASE.

  8. Before diagnosing/treating a csf leak make sure it’s not a cervicogenic headache. These headaches can also improve while lying down (due to less strain on neck), can be positional focalised headaches and are often accompanied by a stiff neck and dizziness. So very easy to confuse with a csf leak.

  9. Dr. Carroll. You are absolutely brilliant and you have given me a key to cure. I was looking behind you at the book case. Next time you are recording something in that room PLEASE move the Clinical Anatomy for Dummies and Anatomy and Physiology for Dummies. While both wonderful books there is just something wrong with it being right behind you. Don't worry. I am sure you don't use them.

  10. I have MC S. I had a whiplash injury from 25 years ago and when I'm triggered by certain chefs my head Has burning and intense stinging.

  11. i woke up from spinal surgery two years ago with all these symptoms.

    Ive seen hundreds and hundreds of specialists and Im at a point now where EVERY specialist turns me away.
    I have been turned away from over 10 specialists due to my complexities and have been turned away from almost every public pain management program in my state. And those programs that I have done wont re-take me. (I wouldnt do them anyway as once I get there they tell me to go back to my GP as "youre too complex for us to help you, you're GP knows you best" but my GP Is just as fed up as me and doesnt know what to do anymore for me.

    just a quick rundown on me. Im 20 years old from melbourne and have had 13 surgeries in my short life.

    MEDS:
    Cymbalta 90MG 1 daily
    Midodrine 5MG 4×4 DAILY
    FLUDROCORTIZONE 2 DAILY
    Sandimigran 2×2 DAILY
    Dexamphetamine half tab daily
    melatonin 3MG 1 tab daily
    Tapentadol slow release 2×1 DAILY

    DIAGNOSIS:
    i have: EDS hypermobility (investigating vascular), Fibromyalgia, Chronic Migraines, Spondylolistheis, CFS, PTSD, anxiety, depression, sinusitus, hiatus hernia, POTS and insomnia (only condition that is "stable") those are my main issues

    MAIN ISSUES:
    I experience so much pain everywhere that I am very limited. and my heart rate is poor.
    Lying down it is low it is 35-55 bpm
    upon standing it goes anywhere from 130-200bpm and it just keeps going up until i sit down IT WONT STABALISE.

  12. This makes me hopeful and sad because my mother was involved in a bad fall in which she tripped down several stairs and landed face first on concrete requiring a cheek implant and later she had a car accident in which the vehicle was totaled and she went on to develop a history of headaches, she would get nausea when sitting too long which manifested in long car trips as "car sickness" with vomiting and terrible unilateral "sciatica" pain. Eventually she started showing signs of what the doctor said was dementia getting confused when driving, disorganized thinking. I remember she said she was still having bad headaches as the symptoms were manifesting. She wanted to lay down in the bed to get relief all the time. My husband would remark that she was never up in the living room visiting anymore. She started doing a constant throat clearing saying she wasn't getting thick phlegm but a small trickle of fluid constantly tickling the back of her throat and no allergy meds helped. Could that have been spinal fluid? Told her CT/MRI's were normal. After struggling with this for years she neurologically declined and passed away the day after her 63rd birthday this year 1/2/17. We have no history of dementia in the family. Now the same local medical professionals are telling me my MRI/CTs are normal although I have had just about every symptom he has described in this video for the past three weeks. I have a history of two epidural sticks for the same labor and delivery some years ago as I have uneven spine issues and the first epidural did not take for very long. I had a horrible headache postpartum and taken for X-ray before discharge to rule out a leak but was told X-ray was normal and given pain meds. Last summer I rode two very rough roller coasters at a popular amusement park here in TN. That night developed a horrible vice grip headache to the back of my head and neck! I thought it must be dehydration although I had kept well hydrated that day. I loaded up on a sugar free sports drink and when that didn't help I ate a small can of soup. Took otc pain meds because the salt wasn't helping much and tried to sleep. Rested all the next day in bed with more high salt intake. By day three it had diminished. I spent the next 3–4 months lifting and caring for my mom and grandma who were both disabled and almost dead weight. Back would get sore often. Had one incident of being a passenger in a car that slammed on the breaks really hard but no one was injured. Now that headache has returned with a vengeance on standing! Better when laying down flat! Almost fainted every time would stand from the head pressure pain and visited local ER which they totally focused on my brain! Did not look at my spine. May have to make a trip to CA! These doctors don't know what they are doing here and I don't think many of them care. People tend to get on disability pretty easy here and there is a high rate of prescription pain med abuse! I don't like taking much medicine and end up laying down to deal with the pain which helps for now but has changed my life in such a negative way! The thought that someone could potentially have a leak go undetected for years and end up so neurologically devastated that it kills them prematurely is heart breaking and avoidable!

  13. What i don't get is why are aterior thorn duras, secondary to disc or bone spur treated with blood patch just like post epidural punctures. There is enough common wisdom and research out there to predict the outcome for each situation. We are leaking at different levels and for different reasons, lets think what will it take to "FIX" the leak and restore lives rather than working on the leaks indefinately till Medicare takes over the wreck.

  14. I know my child and I who have been diagnosed with HEDS and POTS are very likely to have a leak or 2 and don't believe it has to be a CFS leak or POTS. I think lots of us could have both. I have found a neurosurgion in my country that is going to check this out for us. Thanks Dr Carroll for caring

  15. What we really need is a better CT scan of the head to show fractures, especially in the cribriform plate…Another thing, when injecting radioactive dye into the spine with pledges placed into the nose to determine if there is a leak…the patient should do some type of physical activity before the pledges are removed to promote the leak.

  16. Ive been diagnosed with neuro cardiogenic syncope. After the tilt table test. I have severe migraines. They immediately become enhanced by positional changes sitting upright is ok. If i lean in any way or lay down it become much more extreme. I become confused standing long weak. L2 l3 diffused unknown why assumptions full child hood. Migraines last days. Ihave bad neck pain and mysterious thoracic spine pain. Ive fainted and fallen many times. N 5 car accidents in my life. Ive also had an accident sledding where ive landed on my neck after high rate of speed. I keep getting handed around and was told to just cope. I know you speak of standing headaches. But EVERY thing you have said besides the standing headache. I relate to. Its been years of referrals. How can i present this to doctors without being blown off or immediately dismissed. Its been 4 years. Im in my early thirties now.

  17. 25:30 I have this exact scenario from an MRI and have been dismissed by a Prof Radiologist, a Prof of Neurosurgery and another Neurosurgeon. They won't put me forward for a CTM even though I have all the classic symptoms and story to go along with it.

    Get ready for the ride of your life sufferers, there is a lot of ignorance out in our 'specialists' and you must remain strong and keep finding the right people. I can't wait to show them all how wrong they were.

  18. This is me. Been tested head to toe, all tests are normal. The doctor said I have silent migraines and anxiety… will not even test me for a leak. They say it’s rare and it’s impossible for me to have a leak. I live in misery everyday.

  19. Does a person need all these symptons to be considered leaking? Because im not that flexible, im 6foot tall, male, constant headaches all day every day, mostly feeling like a pressure in the head and pain, but sometimes gets really bad. My concentration is affected by these. I dont have or ever had any nausea or vomitting however, and i cant recall standing up being worse vs laying down however its the only way to make the pain go away eventually. I am constantly tired, very low energy, very poor sleep, and very little motivation for anything. i have some neck pain and tightness, did some ct scans and mri but nothing, tried many pills and anti-depressants, no effect but doctors just keep giving me stronger anti depressants which have no effect as of yet. This has been going on for over 5 years, familly basicly doesnt take me seriously and is always on my case for being "lazy" and so on. At this point im really fed up and dont see an end to this. Could this be a leak or something related? I can provide alot more details for ANY info or help

  20. The less proactive drs I see are the more I contemplate suicide…5 plus years of a living nightmare while awake 🌬🧠..my dr said I’m too skinny for this condition,wait isn’t medical information & ages of conditions evolving?!🤦🏽‍♀️🚫

  21. I've been diagnosed with POTS, but I really feel this is what it is! Constant leak in the back of my throat, bending forward nose runs clear watery liquid, and I'm so confused and my head is going to explode all day, nausea, always above 100 pulse when standing and abnormal flexibility. I want this to be over! ER or do I wait for weeks for another neurology appointment. He just put me on Amitriptyline for chronic silent migraines, help 🙁

  22. yeah, sent an email to stanford office. autistic, dx with fnd and ptsd and disabled since 2010. and this … this right here … after so many years im afraid to feel hope for less pain, but damn gotta find out …

  23. Can ONE organization gather all the good doctors who have patients in mind – and group diagnosing us? 6 months post-craniotomy, I have some issues with headaches. Finally, my surgeon's resident told me I might have a migraine and other neurologist said I might have CSF leak. Now, I'm about to switch back to my old HMO (bad) insurance, now what?

    Praying! Thank Dr. Carroll shared this video. I am learning…

  24. OMG You have explained my sons condition exactly..he is def has been a chronically leaking. EDS, multiple surgeries and trauma.

  25. So am I going to die or end up brain damaged? Because if that’s the case, I’d rather kill myself right now. >_>

    What do I do? No one wants to help me. I’ve been to the ER. CAT was normal.

  26. How do we see this doctor? I just went to the doctor today with most of these symptoms after being in intense pain for 14 days in the type that he explains and was blown off again. I just want relief. 🙁

  27. I've had these symptoms for 25 years, and it's been life crushing. After many false starts, years on morphine and a successful, helpful Naturopathic procedure called NeuroCranial Restructuring that improvemed my condition 80%, I just learned to live a half life with the rest of it. I just recently learned about CSF Leaks, though I thought CSF was involved for a long time. I've seen over 2 dozen doctors that couldn't help and eventually gave up looking. I often thought "I wish I could see Dr House, except that he almost kills you three times before he gets it right" LOL. Having an MRI seeking diagnosis in early August. Thank you for this excellently detailed video.

  28. Dr.Carroll ,would you please UPDATE your Contact info,I can't get in contact with you.Does anyone else have his updates contact info or been in contact within last few months.tyvm

  29. I have severe pressure in the back of my head. The diagnosis is sub occipital neuralgia. I do have a L5 hemangioma as well. I am going to get a neck and brain MRI next week.

  30. I think I have this. This sounds like me a billion times over. I have hypermobility and am waiting on a genetic counselor's confirmation of EDS. I basically had to talk my way into the sort of crappy Doctor I see now because nobody wants to deal with a patient that got Cauda Equina Syndrome twice at the age of 25, and to get any testing from her is like pulling teeth. None of my symptoms are taken seriously.

  31. Amazing,i had my spontanius leak last august, several stays in hospital, 2 blood patches, it has calmed down a bit but am still having bad heads when standing, i have now seen my Dr here in the UK and have asked and have been refereed to a Dr in stoke who deals with this, i can not wait to see him as i'd love to feel great again, so misundertood here in the UK, wish this Dr was here, i'd love to see him.

  32. I'm in Wisconsin. Who can I see here? Is there a way to find out? Please can you help me? I live with several of these including EDS, orthostatic intolerance but not enough to be dx as POTS. I'm struggling to get help in Western Wisconsin. I live in bed and can only get up short periods of time, have osteophytes, and "migraines". Am considering going to the Chiari center but can't travel that far yet. Can you help? I'd love to be a successful story.

  33. i wish i could come to you from the Netherlands. My wife has this problem for 16 years now! A few weaks a go they got diagnosed NDPH. But 16 years a go she had a spinal narcose and i am thinking my wife is leaking. But the docters here dont want to look too it. Sorry for my bad english btw. We dont know what do do anymore! Greetings Richard

  34. I have to come back. Is the 2nd photo from Eagles Syndrome? thank you. So far I have had all the things. It all makes sense. Aw.. I also have Leaky Friends. Thank you. Zebras often get ignored and diagnosed with Migraines…

  35. This is me. They haven't seen it on my films. So they said they can't help me. This is too rare. It must be something else because it can't be seen easily!

  36. Thank God for experienced, caring and brilliant doctors such as Dr Carroll and my neurologist Dr Chan. Prior to my spontaneous migraine like headaches I got 3 weeks ago I had no clue what a migraine headache felt like. This terrible headache, which felt like a terrible brain freeze, started at the base of my skull radiating to my temps and the top of my head caused me to vomit. As I was waiting to be seen at the Urgent Care I realized that laying down resolved my headache. I was sent for a Head CT scan and lab work. The UC doctor believe it may be my sphenoid sinus that is causing the headaches so I was given antibiotics. 1 week later after taking all the antibiotics, still had the same symptoms, the only difference is my headaches sometimes felt for like a stiff neck and shoulder pain w/a minor headache but caused me to not be able to focus when standing and the tightness/pain worsened in a sitting position. I was then referred to an ENT Dr who thinks I have occipital frontalis due to a whiplash from the car accident I was in a year ago. While waiting to hear from a Physical therapist I was then referred by my primary Dr to See a neurologist who believes I may have IH (intracranial Hypotension) due to a CSF leak. She said my brain MRI looks like my brain is sagging. I’m going to be going in for a MRI w/ contrast this coming Monday so we’ll see but we did discuss doing blood patches.
    I’ll say the last 3 weeks have been crazy. I’m normally very healthy and active but since my spontaneous and positional headaches started I’ve had to lay down most days. Some mornings I wake up thinking I’m back to normal because there’s no pain, no headaches and I can hear just fine. Then later on in the day I’m back to square 1.

  37. Wow, this all sounds so eye opening. What is causing all these problems? Pseudotumor cerebri. Reaction to Myleogram, several rear end car accidents, a fall. MRIs that show bulging discs, bone spurs. Ringing ears, dizzy, on and on. There has to be a reason! This sounds reasonable!

  38. Dr. Carroll- my daughter is suspected to have a CSF Leak, but doctors are afraid to do a CT for fear of it worsening. After a 60 day migraine, she had a spinal tap, with a puncture and they did a blood patch for that puncture also hoping to help a possible leak. Her 60 day migraine stopped, but we are unsure if it was the blood patch or the Aimovig (CGRP blocker) that she had been given the month before. If it is a CSF leak, can the CGRP block the migraine that may be caused by a spontaneous CSF Leak?

  39. I have seen paged here this person is connected to scam artist eds neurosurgeons … is that true? people need real neurosurgeons who don't just cut cut cut and take money .

  40. After so many doctors said I just had an intractable migraine (and didn’t bother looking at my other symptoms) I finally had a neurologist realize “hey you might have a CSF Leak” and sent me for a LP that showed low opening pressure. Had my first EBP last week! I’ve never been so happy to have some answers. A fellow CSF leaker had me watch this video and I’m so incredibly grateful they did. I haven’t been diagnosed with any sort of connective tissue problem but I certainly fit that bill. I’m going to ask my doctor more at my follow up this week. I think I’ll likely have to have another blood patch since I’m still getting pain when I’m upright and they worsen throughout the day.

  41. I had a traumatic epidural and had a post dural puncture headache. I received two blood patches to fix it and was finally able to walk. Now 3 months after I am having terrible neck pain and headaches throughout the day and with exertion. I have returned to the hospital begging for another blood patch and after an MRI of my brain where they claimed they should see inflammation of my meninges. When they didn't see inflammation in the meninges of my brain, they refused another blood patch. I tried to tell them that I know MRI is not a reliable way to diagnose a persistent leak, but they sent me home in tears begging for help. I am now pretty much confined to my bed and house. I am 28 years old with a newborn I cannot take care of. I wish I could contact this doctor so I could have my life back. Some days the pain is so great, I just want life to be over. If you see this Dr. Carroll, please help. I don't know who to turn to for help to recover.

  42. Dear Dr. Carroll, I was involved in a Obtuse Head on car crash at highway speeds in January, 2014. For months after the crash I had clear fluid running from both ears that would wet my pillow. since then these leakages come and go . My family doctor at the time was in his mid eighties. I was forced because of my elderly doctors incompetence to get a new family doctor. My new family doctor sent me to a local neurologist who had me do an MRI without contrast dyes. The MRI showed I had a silent stroke on my right frontal lobe, but otherwise normal. I had told the neurologist that I was having migraine headaches usually emanating from my lower neck at my shoulders , I told the neurologist I was having issues with loss of balance , tinnitus in both ears , loss of hearing, loss of taste and a continual bad taste in my mouth. I am also having loss of memory, confusion and mild cognitive issues . After the accident I was no longer able to do my previous job and retrained for an at home reservationist for Marriott Hotels, I was working a 4 pm to 1 am shift and as the night progressed I was getting fatigued and start having issues with my memory (forgetting where I was in the reservation) and making booking mistakes, finally I would get extremely anxious and get a roaring migraine headache ending with me booking off my shift. I have since had to take a medical leave of absence. The neurologist has told me there is nothing he can do other than medicate me with drugs, The drugs the neurologist has prescribed (Amitriptyline, Duloxetine and Cambia) made me feel like a zombie and I couldn't take them . My family doctor has put me on CBD drops and this seems to handle my pain issues, without any side effects. The neurologist has told me that the head on accident could not be responsible for my problems and he cannot help me. I have just watched your YouTube video and wonder if you can steer me in the right direction. Best regards, Don Gibbs

  43. I got diagnosed with pots and eds after having a epidural, I’m better laying… down and my headaches increase horrible when I stand… my headaches start from the back of my neck, light sensitivity, my ears are muted, pots symptoms, shortness of breath and I feel the wetness and weakness in my body is increasing… and want to see this doctor because I was so healthy before my epidural. 🥺😩 this is so me…

  44. Oh wow, this just explained my whole life. Like that first patient, I was diagnosed with POTS but my bp goes up and not down. I also have EDS. I'm so glad to know my exhaustion, headaches, and episodes of disorientation have a real cause!

  45. O my gosh please please please help I think I have this maybe! Please call me 😭😭😭😭😭 I need help doctor's will not help

  46. They are saying that I have dysautonomia and orthostatic hypotension…in fact I have orthostatic hypertension and headache that by the end of the day I am like the tall man confused. Both my father and brother are 6’3 but I am only 5’4 the only relief from my symptoms is laying down! I have a referral to Stanford for the dysautonomia program I really hope that they accept me!! If it’s this simple and possibly able to reverse this! 🙏

  47. I fought and fought and fought… My doctor's told me I was crazy, sent me to mental health. I just found out 2 days ago I have a leak. I'm not crazy.

  48. Is Dr. Carroll only in CA? I'm in Tennessee and I would like his help! Two years of hell being told I have POTS, Occipital Neuralgia (with an unsuccessful decompression surgery) and chronic daily migraines. My headaches get worse with standing. Ive failed 12 different medications, chiro, botox, confusion and dizziness with standing, my pain is lower in the mornings but gets worse through the day. I would really like his help! No one here in Tennessee will listen to me. If I tell them I saw this video they will only tell me I am just a paranoid hypocondriac after web browsing. I'm tired of suffering!

  49. Hello all.

    I always promised If I got a second chance in life I would do two things..

    1. Raise awareness for Chiari malformation to the general public. I am now a motivational speaker and often do podcasts and videos talking about my journey such chiari

    2. That I would come in to these groups and try to make an impact.

    Heres what I know..

    I was booked for a second decompression surgeru with cautirization of the brain before someone showed me this video. This literally saved my life.

    I didn't need a second surgery.. I needed spinal fluid leak surgery..

    Please please please watch this video…

    My life was VERY hard to rebuild even after the surgeries. In fact I am still leaking at c3-high fatality probability or paralysis with injections there.. i documented my journey on how I rebuilt my life over the last two years to help people as well.

  50. Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage 
    Use of Beta-2-Transferrin to Diagnose CSF Leakage

  51. Wow not sure how I found this today – but in chronic Headache mode at a moderate to high pain levels daily for way too long and even more the last 3 weeks I do have MCAS they are thinking POTS from vertigo dizzy nausea HR issues and maybe EDS because of all my symptoms and yes I am a survivor of a severe whiplash Cervical Spine Injury C1-C2 which had me in ICU and paralyzed not moving anything from neck down for a week – I did have a spinal tap as a teen – Epstein Barr Virus and 3 Epidurals with 3 high risk pregnancy Getting ready to work with a new doctor – Migraine Meds do not work for me. My ligaments in my neck are stretched and I have TMJ so I am a bobble head of muscular tension- struggling to do Adult Daily Living Skills when I use to be an Elite Athlete. Not sure how to advocate for myself about getting tested. Just hearing Tilt Table test makes me nauseated

  52. Try going from having a great career, to losing your job, tossed a Benzo or AD … then losing Insurance. Now I can’t find any help!

  53. How do I contact you? When I showed my husband this, he looked stunned and said 'he's describing my wife' and you are. I'm in the UK but really need your help!

  54. Could a leak be caused when your neck has been fractured? My father has had many acidents with whiplash and his neck fractured 6 times. He definitely doesn't have structural problems- as he has never been flexible- if anything irreguarly inflexible. But he has had headaches like this for a long long while. Given it could be just because he's injured his head and neck so many times- but I'm curious if this is could be a reason why people who have had lots of head trauma have consistent migraines.

  55. This sounds like what I deal with and my chronic pain. I have had surgery 2 times for Chiari & Syringo. Would like to know who I can go to and see if I can get relief

  56. Can anybody recommend a Neurologist in NJ for this? MRIs are all normal, and I keep getting told it’s Migraines…

  57. I have a leak, that's been trickling down one nostril since I was kicked in the head by a horse 8 months ago. I have every symptom of a csf leak, but getting consultants here in the UK to take me seriously is hard. As the leak is small, though someday feels gushing, collecting a sample is nigh on impossible. Every day is the same on rising – splitting headaches, severe neck pain, shoulder pain, tinnitus, double vision, dizziness, memory issues and my left nostril weeping. Your video offers me hope that eventually I may get my life back! I hope I find someone soon who will listen and act like you have! Thank you for producing this video!

  58. getting referred to CSF specialists is the challenge… so many of us out here that have this and mri is "normal"… and they write you off as a headache disorder …. with no clear path to a csf specialists… surprised no mention of post nasal drip that is not associated with a cold ….

  59. Omg. This is me! I had so many MRI and CT scan and came back normal. I been told i have been stress and chronic migraine and on medication for years. I am to the point staying home, laying flat all the times .
    I have all of this symptoms..
    Need to see him asap! Thank you so much for this video!

  60. I have a headache as I’m laying here watching this
    I have a bad headache every single day every single night I am taking through no fault of my own I know it’s bad and I know it’s dangerous but I’m desperate taking up to 8 to 12 Excedrin a day I have fibromyalgia intractable pain and neuropathy herniated disc’s and the pain I’m going through from top to bottom is unbearable it’s intolerable and what the government is doing to us by not letting us receive pain meds is adding to the stress and anxiety and headaches and I don’t know what to do anymore
    I have all you described!!!

    Sharing!

    I ended up in ER approximately 3 or 4 times in a year because the migraine was debilitating n they gave me toradol iv which helped a lot

  61. Dr. Carroll help! I am at the hospital again in Seattle and they refuse to do a CT scan and I had a LP and post Dural patch. That damaged my spine end of April and I can’t walk now. I can’t sit anymore. I am numb from the waste down and now my upper body is numb as well. Still have CSF leak symptoms and am going to be permanently damaged or never able to sit up or walk soon. The more I do the worse I become so I have to protect myself. I requested my neurologist to refer me to you but had to come back to the hospital when I could no longer sit up. The pain is never ending and I can’t move my body without pain or assistance to move to lay on my side. The pain is the same deep pain that gets to the point they don’t inject anymore blood during the BP. It’s worsened since 4/25/19 when I had the BP. I couldn’t stand or walk and had to stay the night but chose to be wheeled to my car and go home. It’s crippling and the numb and tingling is very severe. I need you and your team to find what damaged me and get it fixed. I am unable to be treated for other neuro issues so I can try to be more whole and human again

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