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
ic38@stanford.edu.
Now how can we access this film?
You will be able to get this
on the health library website.
