When Pelvic Pain Is Vascular: May-Thurner, Vein Stents, POTS & Endometriosis

A Vascular Clue To Chronic Pain

SPEAKER_01
0:00

What
if
the
source
of
your
pain
has
been
hiding
in
your
veins
all
along?
Could
Maithurner
syndrome,
nutcracker
syndrome,
or
pelvic
venous
insufficiency
be
behind
your
nausea,
hip
pain,
back
pain,
pelvic
pain,
or
even
the
fatigue
no
one
has
been
able
to
explain?
And
what
if
you've
already
had
multiple
surgeries,
multiple
diagnoses,
and
still
don't
feel
better?
In
this
episode
of
Indobattery,
we're
joined
by
the
much
anticipated
Dr.
Brooke
Spencer
to
uncover
the
world
of
vascular
disorders.
We
talk
about
diagnosis,
stinting,
chronic
pain,
comorbidities,
and
why
recognizing
these
conditions
can
be
so
challenging.
Could
a
vascular
disorder
be
the
missing
piece
you've
been
searching
for?
Let's
find
out.
Welcome
to
Indobattery,
where
I
share
my
journey
with
endometriosis
and
chronic
illness
while
learning
and
growing
along
the
way.
This
podcast
is
not
a
substitute
for
medical
advice,
but
a
supportive
space
to
provide
community
and
valuable
information
so
you
never
have
to
face
this
journey
alone.
We
embrace
a
range
of
perspectives
that
may
not
always
align
with
our
own,
believing
that
open
dialogue
helps
us
grow
and
gain
new
tools.
Join
me
as
I
share
stories
of
strength,
resilience,
and
hope.
From
personal
experiences
to
expert
insights.
Welcome
back
to
Indobattery.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table.
Today
we're
diving
into
a
topic
that
can
be
incredibly
important
for
people
living
with
chronic
pelvic
pain,
unexplained
abdominal
or
hip
pain,
leg
symptoms,
and
even
years
of
unanswered
questions,
vascular
compression,
and
pelvic
venous
disease.
And
I
am
so
excited
about
today's
guest,
Dr.
Brooke
Spencer,
who
is
a
board-certified
interventional
radiologist
and
the
medical
director
and
CEO
of
Minimally
Invasive
Procedure
Specialists,
or
MIPS,
here
in
Colorado.
She
has
spent
more
than
two
decades
treating
complex
venous
disease
and
has
performed
more
than
7,000
venous
interventions.
But
what
really
caught
my
attention
is
her
work
in
pelvic
venous
disease
and
chronic
pelvic
pain,
and
her
commitment
to
better
understand
why
some
patients
continue
to
struggle
with
symptoms
that
can
be
incredibly
difficult
to
explain.
Please
help
me
in
welcoming
Dr.
Brooke
Spencer
to
the
table.
Welcome
back
to
part
two
of
my
conversation
with
Dr.
Brooke
Spencer.
We
left
off
unpacking
pelvic
venous
disease
and
vascular
compression.
But
now
we're
getting
into
the
questions
that
come
next.
When
is
stinting
appropriate?
And
what
are
the
risks
and
long-term
considerations?
And
how
do
we
know
what's
actually
driving
pelvic
pain?
We'll
also
connect
the
dots
between
venous
disease,
inflammation,
mast
cell
activation,
and
of
course,
endometriosis.
Let's
jump
back
in.

What Iliac Vein Stenting Involves

SPEAKER_01
2:59

Alright,
what
is
stinting,
first
of
all?
Because
I
think
for
those
people
that
are
just
hearing
about
this
for
the
first
time,
they're
that
could
seem
a
little
scary
when
approached
with
that.
What
is
stinting
and
what
are
the
risks
versus
benefits
that
you
see
in
your
practice
and
what
you
are
doing?
Because
you
are
going
to
be
more
aggressive
in
helping
these
patients
who
are
like,
I'm
at
my
wit's
end
with
what
I'm
dealing
with.
I
need
help.
Can
you
please
help
me?
And
you're
like,
Of
course
I
will,
because
I'm
amazing
like
that.
I
mean,
well,
you're
very
sweet,
but
like
that.
But
I
said
that
for
you.

SPEAKER_00
3:30

So
well,
I
appreciate
that.
And
you
know,
I
I
think
so.
What
iliac
vein
stenting
is
is
for
me,
so
everybody
does
things
a
little
differently,
right?
But
I
use
the
saphenus
vein
for
access
in
most
patients.
So
what
is
the
saphenus
vein?
It's
a
superficial
vein
in
the
thigh.
It's
outside
the
muscular
compartment.
It's
easy
to
put
compression
to
control
any
bleeding
issues
and
access
site
complications
are
very
rare.
Some
people
use
the
femoral
vein
and
they
go
in
deeper,
but
I've
found
that
people
recover
more
quickly,
get
up,
and
have
less
discomfort
if
we
use
the
saphenus
vein.
So
on
average,
we
use
a
saphenous
vein.
Now,
people
who've
had
their
saphenous
vein
ablated
or
closed
because
they
have
reflux
or
blood
flowing
the
wrong
way
in
their
legs,
we
can
still
use
it.
There's
usually
a
stump
that
people
leave
behind.
So
if
not,
we
go
in
the
femoral
vein.
Okay.
And
then
what
I
do,
and
this
is
very
important,
like,
you
know,
I
know
this
isn't
a
super
technical
field,
but
you
asked
me.
So
I'm
going
to
tell
you.
So
I
put
a
micropuncture
catheter
in,
and
I
immediately
do
a
venogram
because
the
veins
are
very
sensitive
to
spasm.
And
you
touch
them,
they
can
spasm,
and
I
immediately
get
to
see
on
a
vena
what
size
the
vessel
is
and
what
it
looks
like.
Then
I
put
the
intravascular
ultrasound
catheter
into
the
inferior
vena
cava
over
a
wire
that
slides
up
there
usually,
even
when
there's
a
compression,
there's
not
usually
a
circumferential
fixed
lesion.
So
the
wire
usually
goes
up
fairly
easily.
And
then
we
put
the
intravascular
ultrasound
catheter
up
and
pull
it
down
from
the
heart
all
the
way
through
the
inferior
vena
cava
and
through
the
iliac
venous
system.
And
then,
you
know,
we
measure
that.
We
measure
the
size
of
the
inferior
vena
cava,
we
measure
the
compression,
we
measure
the
normal
size
of
the
common
iliac
vein.
Sometimes
there's
a
prestenotic
dilation
or
a
poof
in
response
to
the
pressure.
And
we
measure
the
external
iliac
vein.
So
while
all
that's
being
measured,
what
I
do
is
take
a
catheter
and
go
into
the
renal
vein.
Most
of
these
patients
have
both
compressions.
They
can
both
contribute
to
some
of
the
symptoms
that
are
seen
in
these
people.
So
I
had
one
patient
say
to
me,
This
doctor
said
you
did
a
drive-by
renal
venogram.
And
I
said,
okay,
so
that
concept
comes
from
the
fact
that
years
ago,
when
patients
had
high
blood
pressure,
we
knew
that
narrowing
of
the
kidney
arteries
could
cause
that.
And
so
every
time
cardiologists
were
doing
a
heart
catheterization,
some
of
them
were
also
looking
at
the
renal
arteries.
And
it
got
dubbed
this
term
a
drive-by.
Okay,
so
for
this,
I
think
those
people
maybe
don't
understand
that
most
people
with
an
iliac
vein
compression
have
some
degree
of
renal
vein
compression.
And
the
the
definitive
way
to
evaluate
this
is
with
venography,
pressure
measurements,
and
intravascular
ultrasound.
Now,
why
pressures
in
the
kidney
and
not
in
the
iliac
region?
Because
I
don't
do
pressures
in
the
iliac
region.
My
answer
is
the
iliac
region
has
innumerable
collaterals
all
over
the
place
that
we
can
see
that
can
decompress
the
iliac
vein.
The
kidney
is
an
end
organ,
right?
And
it
drains
through
one
vein
on
average.
So
I
think,
personally,
that
the
pressure
measurements
may
be
more
helpful
in
the
kidney
than
they
are
in
the
iliac
vein.
That
being
said,
some
of
the
very
worst
nutcrackers
I've
ever
seen
that
have
collaterals
everywhere
where
there's
no
flow
going
out
the
kidney
vein
itself
actually
don't
have
very
elevated
pressures
in
the
kidney
vein
because
the
body's
rerouted
it.
But
the
symptoms
are
on
the
basis
of
a
location
of
those
collaterals.
Now,
a
lot
of
docs
in
interventional
radiology
are
taught
that
nutcrackers
associated
with
blood
flowing
the
wrong
way
down
the
ovary
vein
or
pelvic
congestion
syndrome.
But
they're
not
taught
that
it's
actually
more
common,
in
my
experience,
from
doing
venograms
on
all
these
patients,
to
see
rerouted
blood
flow
along
the
ascending
lumbar
vein
and
the
epidural
venous
plexus
through
the
spinal
canal
up
into
the
chest,
which
can
contribute
to
chest
pain
and
postural
orthostatic
tachycardia
and
upper
abdominal
pain
and
mid-epigastric
pain.
So
all
these
things
are
interconnected.
And
I
think
all
the
docs
out
there
that
are
seeing
patients
are
well-meaning.
I
think
the
docs
that
tell
young
patients
you
absolutely
should
not
have
a
stent
put
in
are
well-meaning.
I
think
they
really
believe
this
because
the
reality
is
we've
been
putting
in
stents
since
1998
in
the
venous
system.
Charlie
Semba
and
Mike
Dake,
brilliant
interventional
radiologists
at
Stanford,
were
the
first
to
publish
stenting
the
iliac
vein
after
blood
clot
removal
on
the
left
side.
And
that
was
in
the
90s.
So
we
haven't
been
doing
it
for
50,
60,
or
70
years.
So
we
don't
have
data
on
what
happens
to
these
stents
in
50,
60
to
70
years.
But
a
stent
is
like
you
can
look
it
up
online,
right?
There
are
lots
of
different
set.
Look
up
Venus
stent.
So
a
stent
is
almost
like
an
open
chicken
wire
design,
right?
So
it's
metal
with
holes
in
it,
right?
Like
a
crocheted
shirt.
It's
not
a
solid
tube.
Okay.
It's
flexible.
It
bends,
it
can
twist
a
little
bit,
and
it
even
elongate
and
foreshorten
a
little
bit.
So
the
new
FDA
approved
venous
stents,
and
there's
several
of
them
on
the
market,
were
designed
to
specifically
help
resist
the
compression
and
to
be
more
flexible
and
to
be
the
right
size
for
the
iliac
veins,
which
are
twice
as
big
as
arteries,
by
the
way.
I
have
lots
of
people
come
to
me
and
say,
I
thought
the
stent
was
going
to
be
this
big,
and
they
see
that
it's
this
big
and
they're
like,
oh
my
gosh,
that's
huge.
And
they
are.
The
average
size
of
a
stent
in
a
woman
is
probably
14
millimeters
or
1.4
centimeters,
and
in
a
man
is
probably
about
16.
But
stents
have
been
placed
anywhere
from
10
to
20
millimeters
in
the
iliac
vein.

SPEAKER_01
8:40

Interesting.
Because
I
think
that's
one
of
the
things
that
people
are
concerned
about
is
the
longevity
of
it.
But
then
also
for
those
who
maybe
have
had
a
stent
placed
before
and
maybe
it
wasn't
done
correctly,
or
maybe
it
was
the
wrong
stent.
Who
knows
what
the
case
is
for
those
people?
But
I
think
there's
a
lot
of
concern
with
putting
other
stents
in
to
someone
without
knowing
what
the
long-term
outcome
is
going
to
be
for
years.

SPEAKER_00
9:03

Well,
and
I
think
we
have
to
decide
what's
a
legitimate
concern,
what
are
the
concerns,
and
let's
identify
them,
right?
So
what
happens
when
you
put
a
stent
in
the
body,
whether
it's
in
an
artery
or
vein,
is
that
the
body
starts
to
form
a
lining
on
the
inside
of
that
stent
almost
immediately.
And
it
incorporates
that
stent
into
the
wall
of
the
vein.
So
you
literally
grow
the
stent
into
the
vein
wall.

SPEAKER_01
9:23

Right.

SPEAKER_00
9:24

So
I've
heard
lots
of
people
concerned
that
50
years
from
now,
if
the
stent
were
to
fracture
or
a
piece
of
the
metal
were
to
break,
it
would
end
up
in
their
heart
or
their
brain.
First
of
all,
it
can't
end
up
in
your
brain
unless
there's
a
hole
in
your
heart.
Right?
It
would
end
up
in
your
lungs,
like
a
pulmonary
embolism,
right?
But
uh
it
will
be
incorporated
into
the
vein
wall
and
covered
in
tissue.
So
I'm
not
really
worried
about
stent
migration
or
embolization
in
a
delayed
fashion.
That
doesn't
make
sense
to
me.
Now,
in
most
of
the
data
and
literature
and
all
these
stent
trials,
strength
fracture
really
wasn't
a
big
problem.
These
stents
are
flexible
and
they
can
move,
but
I
don't
have
any
data
to
support
this.
But
in
me,
I
would
believe
that
if
the
vein
wall
is
thickened
and
incorporated
the
stent
in
it
and
lasted
for
25
years,
I
can't
imagine
that
all
of
a
sudden
it
collapses.
Now,
I
am
old.
I'm
not
going
to
tell
you
how
old,
but
I
have
been
doing
this
for
25
years.
And
I
started
putting
stents
in
early
in
my
career.
I've
been
in
practices
now
for
over
15
years
in
the
same
practice
environment
where
I've
seen
people
for
that
long.
And
I
have
not
seen
stent
fracture
be
the
reason
that
people
have
a
problem
with
a
stent.
Maybe
one
out
of
about
10,000
patients.
So
what
is
more
likely
a
problem
with
a
stent
long
term
is
a
clotting
issue.

The Real Risks Of Venous Stents

SPEAKER_00
10:42

Okay,
so
the
three
main
risks
of
putting
in
an
iliac
vein
stent,
one
is
back
pain,
one
is
stent
migration
or
movement
of
the
stent
before
it's
incorporated
into
the
vein,
forward,
backward,
or
into
the
heart.
And
the
third
is
clotting.
Okay,
so
so
after
the
new
FDA
provena
stents
came
out,
of
all
of
the
reported
stent
migrations,
there
were
about
four
out
of
a
thousand,
which
is
not
a
lot,
but
it's
enough
to
be
concerned.
And
so
each
of
the
stent
companies,
because
every
stent
has
been
reported
to
migrate,
to
my
knowledge,
except
maybe
the
brand
new
one
that
just
came
out
and
people
are
have
learned.
You
know,
went
back
to
do
safety
committees
with
experts
and
brought
them
in
and
said,
What
can
we
do
to
prevent
this?
And
so
some
of
the
recommendations
that
came
out
is
that
we
no
longer
place
short
little
six
centimeter
stents
in
the
commoniliac
vein
under
the
artery
because
they're
easier
to
move
forward
or
backwards.
And
we
call
it
melon
seeding.
Like
you
grab
a
watermelon
seed
and
it
squirts
forward,
right?
My
brother
used
to
do
that
to
me.
And
uh,
and
so
so
then
the
suggestion
is
for
a
longer
stent.
Well,
part
of
the
problem
is
that
people
that
aren't
familiar
with
this,
they're
starting
to
use
80
and
100
centimeter
stents.
Well,
the
problem
with
those
stents
is
they
end
in
the
curve
of
the
pelvis.
So
the
iliac
vein
is
straight
for
about
six
or
seven
centimeters.
When
you
get
to
eight
to
ten,
you're
gonna
jam
that
stent
into
the
curve
of
the
pelvic
wall.
Now,
is
that
on
everyone?
No,
but
in
some
people
for
sure,
because
it's
curved
like
this,
and
the
stent
needs
to
go
along
the
curve
and
line
up
with
the
vein,
not
end
in
the
curve
and
line
up
against
the
back
wall
of
the
vein.
So
most
people
are
now
recommending
through
these
safety
communities
that
people
use
longer
stents,
like
120
to
150
millimeter
stent.
Maybe
there
are
certain
people
where
100
centimeters
is
long
enough.
Okay.
But
there
are
people
across
the
country
that
are
still
putting
in
short
stents.
And
the
question
is
why?
There
are
safety
committees,
there's
training
programs
that
have
gone
out,
and
if
they
just
haven't
heard
them
and
they
just
think,
well,
I
haven't
seen
that
yet.
Okay,
well,
you
need
to
do
a
thousand.
You
know,
if
it's
four
in
a
thousand,
you
need
to
do
hundreds
of
patients
before
you're
gonna
see
one.
But
I
can
promise
you
that
when
you
see
someone
with
a
stent
in
their
heart
that
can
be
potentially
removed
or
might
require
open
heart
surgery,
you're
gonna
think
very
long
and
hard
about
skipping
the
things
that
have
been
put
in
place
to
try
to
make
this
safer.

Hydration And Sizing Done Right

SPEAKER_00
13:03

The
other
thing
is
that
that
um
we
knew
that
hydration
is
critically
important.
So
vet
think
about
it.
When
you're
dehydrated,
they
can't
find
a
vein,
right?
You
go
to
surgery
and
you
haven't
had
anything
to
eat
or
drink
all
night
and
they're
having
trouble
finding
your
vein,
right?
When
it's
hot
outside,
your
veins
are
huge.
Like
my
veins
are
huge
right
now,
it's
hot
as
heck
in
here.
And
uh,
you
know,
when
you're
freezing,
your
veins
shrink,
right?
So
veins
change
in
size
enormously.
So
we
give
every
patient
a
liter
of
fluid
before
we
go
in
the
room
and
they've
had
at
least
another
half
a
liter
of
fluid
before
we
measure
their
veins.
And
it's
very
important
to
do
that.
And
there
are
studies
that
have
shown
that
the
size
of
the
vein
can
alter
by
one
to
three
millimeters
based
on
hydration
status.
Interesting.
So
these
are
the
things
that
if
you're
inexperienced
and
you
just
don't
know
to
do
this
and
you
don't
do
this,
you
could
take
a
patient
in
the
afternoon
who's
been
nothing
to
eat
or
drink
for
almost
24
hours,
who's
dehydrated
and
undermeasure
the
vein
and
put
a
stent
in
that's
too
small
that
could
then
move
or
migrate.
Interesting.
So
these
steps
that
we
take
are
very
critical
in
making
sure
that
we
size
and
measure
the
stents
correctly.
So
hydration
is
critical.
You
know,
and
then
and
then
back
pain
is
something
that
a
lot
of
people
report,
right,
that
they
get
back
pain
after
placement
of
a
stent.
Now
we're
still
studying
what
that's
related
to.
So
part
of
the
registry
that
Medtronic
is
doing
in
multiple
centers
across
the
world
is
to
do
five
to
10
year
follow-up
data
on
these
people
to
get
more
longevity
data
in
placed
by
cardiologists,
interventional
radiologists,
vascular
surgeons
in
the
United
States
and
Europe.
So
it's
a
big
broad
spectrum
of
who's
doing
this,
right?
Which
I
think
is
wonderful.
And
they
just
looked
at
the
30-day
data
and
the
abstract's
been
submitted
to
the
veins
meeting,
and
hopefully
it'll
get
presented
there
by
Dr.
Gagnier,
Paul
Gagnier,
who's
a
well-known
vascular
surgeon
who
does
a
lot
of
iliac
vein
standing
and
uh
is
excellent.
And
uh
the
initial
data
coming
out
in
that
abstract
looked
at
the
pain
in
the
first
30
days
to
see
does
the
pain
correlate
with
the
absolute
size
of
the
stent,
meaning
12,
14,
16,
18,
20.
Does
the
pain,
you
know,
correlate
to,
you
know,
oversizing
of
the
stent
or
whatnot?
And
in
general,
with
the
data
that
was
recovered,
what
was
able
to
be
said
is
that
on
average,
people
who
got
a
12
or
14
millimeter
stent
started
with
higher
pain
scores
to
begin
with.
So
I
don't
know,
is
that
the
young
women
who
have
chronic
pain
and
EDS
and
all
these
other
things?
They
tend
to
be
smaller,
right?
You
know,
they
tended
to
be
patients
with
non-thrombotic
iliac
vein
lesions
or
nibble
lesions
or
main
turner.
And
but
what
we
saw
is
that
all
the
patients'
pain
went
up
in
the
first
week.
And
the
patients
with
18
and
20
millimeter
stents
had
the
biggest
increase
in
pain
in
the
first
week.
But
at
30
days,
they
actually
had
the
lowest
pain
score.
So
the
absolute
size
of
the
stent
is
not
what's
critically
important.
It's
really
critically
important
what
the
size
of
the
stent
is
to
the
patient's
vein
size
measured
by
intravascular
ultrasound
and
no
other
way.
Okay.
So
the
the
current
recommendations
are
to
oversize
the
reference
vessel
by
this
is
a
little
aggressive,
but
in
the
new
consensus
statement
that
was
published,
one
to
four
millimeters.
Now
the
question
is
what's
the
reference
vessel?
And
that
wasn't
defined
as
the
reference
vessel,
the
common
iliac
vein
at
the
top,
or
is
it
the
external
iliac
vein?
Right?
They
just
say
don't
use
the
prestenotic
dilation
as
the
reference
vessel.
So
what
we've
learned
is
that
if
you
can
match
the
size
of
the
vein
at
the
top
and
oversize
the
external
iliac
and
the
curve
by
two
millimeters
and
put
a
longer
stent
in,
you
get
really
great
smooth
flow
dynamics,
decrease
the
risk
of
someone
having
chronic
back
pain
and
anchor
the
stent
under
the
pinch
in
the
curve
of
the
pelvis
and
down
at
the
bottom.
So
you
get
rid
of,
you
decrease
the
risk
of
the
back
pain,
you
decrease
the
risk
of
the
stent
migration,
you
improve
flow
dynamics
and
decrease
the
risk
of
clotting.

SPEAKER_01
16:55

Okay.
Is
the
risk
with
those
EDS
patients
because
of
that
connective
tissue?

SPEAKER_00
17:01

And
no,
the
risk
isn't
with
the
EDS
patients.
It's
the
same
with
everyone.
I've
seen
absolutely
no
difference
between
EDS
patients.
So
that's
another
fear
that
has
been
published
as
a
fear
with
no
data,
that
the
concern
is
that
stent
migration
would
be
higher
in
EDS
patients.
And
since
we've
shifted
that
technique
several
years
ago
to
putting
in
a
longer
stent
that
matches
the
size
at
the
top
and
is
oversized
appropriately
at
the
bottom.
Knock
on
wood,
I
have
not
seen
a
stent
migrate
a
millimeter
in
three
years.
Hundreds
and
hundreds
and
close
to
thousands
of
stents.
So
I
think
we've
solved
the
migration
problem
if
the
stents
are
sized
and
placed
appropriately.
We've
also
improved
the
back
pain
issue.
Now,
I
do
I
have
seen
patients
who
have
had
a
stent
placed
and
think
that
they
have
back
pain.
But
in
most
of
those
patients
that
I've
seen,
they
also
have
alternative
diagnoses
for
why
their
back
pain
is
there
or
has
gotten
worse.
And
there
are
sadly
some
people
that
get
stuck
with
a
concept
or
an
idea
that
it's
100%
the
stent.
Now,
tethered
cord,
I've
seen,
I've
talked
to
Dr.
Kling
about
this.
I've
seen
people
with
tethered
cord,
they
get
an
iliac
vein
stent.
It
doesn't
get
better,
none
of
their
symptoms
get
better.
Their
back
pain
starts
to
get
worse,
and
then
when
they
get
their
tethered
cord
release,
that
all
gets
better
because
tethered
cord
causes
back
pain,
bladder
symptoms,
bowel
symptoms,
leg
pain,
and
pelvic
pain.
The
same
symptoms
as
iliac
vein
compression.
So
she's
seen
it
the
other
way.
She's
done
a
tethered
cord
release
and
see
people's
pelvic
symptoms
get
worse,
not
better.
It's
not
common,
right?
I
mean,
when
we
make
these
assessments,
people
usually
get
better.
But
there
are
these
rare
instances.
And
what's
hard
in
this
population
for
people
is
that
patients
start
to
lose
trust
in
the
medical
system
because
they've
been
to
so
many
doctors
and
they've
heard
so
many
things
and
they're
getting
conflicting
information
from
different
doctors.
And
it's
terrifying
for
them
to
say,
well,
I
was
told
when
I
was
going
to
go
for
this
procedure,
I
was
gonna
get
better
and
I'm
worse.
So
now
I'm
afraid
to
go
for
that
procedure.
And
I
understand
that
completely.
And,
you
know,
my
heart
goes
out
to
these
patients.
But
another
thing
that
can
happen
when
we
put
an
iliac
vein
stent
is
that
if
it's
rerouting
blood
flow
through
the
pelvis
in
front
of
the
sacrum,
where
all
the
nerve
roots
are
coming
down
and
innervating
the
bladder,
the
bowel
and
the
pelvic
floor,
while
we
improve
that
blood
return
out
of
the
leg
and
the
pelvis
back
to
the
heart,
if
those
veins
have
gotten
big
enough,
they're
gonna
continue
to
pool
blood
and
compress
those
nerve
roots.
So
I've
seen
people
that
have
persistent
or
worsening
sacral
pain
after
a
stent
was
placed,
where
if
we
go
in
and
close
down
those
big
dilated
veins
sitting
on
that
presacral
plexus,
those
patients
get
better.
And
it's
really
interesting
because
I've
talked
to
Dr.
Duke,
who's
a
wonderful
endometriosis
excision
specialist
about
that.
And
he
talked
about
the
fact
that
people
were
going
in
and
doing
sacral
neuralysis,
meaning
killing
the
nerves
or
cutting
the
nerves
in
the
sacrum
because
the
pain
is
so
bad.
We've
seen
people
respond
to
sacral
cord
stimulators,
right?
A
spinal
cord
stimulator
in
the
sacrum
because
these
nerve
roots
are
all
inflamed.
Well,
if
it's
probably
a
good
idea
before
going
that
far
at
this
point,
to
make
sure
it's
not
a
venous
origin
cause
that
can
be
treated
with
a
fairly
simple
procedure
that's
very
easily
recovered
from.
And
the
other
thing
I'll
say
is
that
a
lot
of
the
trepidation
or
fear
that
people
have
about
iliac
vein
stening
is
that
they've
heard
that
it
hurts
really
badly
after
iliac
vein
stening,
and
these
patients
are
already
all
in
pain.

A New Non Opioid Pain Option

SPEAKER_00
20:25

Okay,
so
there's
been
a
development,
at
least
for
us
in
the
last
three
months.
It's
actually
been
around
for
more
than
a
year,
but
there's
a
new
drug
called
gernavax,
J-O-U-R-N-A-V-X.
Okay.
And
it's
a
sodium
channel
blocker
that
blocks
peripheral
nerve
impulses
to
the
spinal
cord
and
the
brain.
And
it's
FT
approved
for
used
in
post-operative
setting
for
a
two-week
period.
It
was
studied
in
patients
with
bunion
surgery,
which
is
a
very
painful
bone
surgery,
right?
And
so
the
way
I
learned
about
this
is
one
of
my
patients
is
an
anesthesiologist,
and
she
had
surgery
for
a
labral
tear,
shocker,
hypermobility,
on
one
shoulder
and
took
oxycode
on
her
percocet
and
had
horrible
pain.
And
then
someone
introduced
her
to
gernavax
and
they
did
her
other
shoulder
on
gernavax
and
she
had
no
pain.
And
so
she
came
in
to
get
her
stent
and
she
started
the
journal
two
days
before,
and
she
needed
almost
no
narcotics
during
the
procedure
and
didn't
take
barely
anything
after
the
procedure,
which
was
uh
which
was
earth-shatteringly
different
from
the
patients
that
we
usually
put
on
Tylenol,
gabapentin,
tramidol
or
oxycodone
or
dilatid,
iV
toridol,
steroids,
just
for
a
non-thrombotic
iliac
fain
stent.
Okay.
So
this
was
a
game
changer.
So
we've
been
using
it
now
for
about
three
months,
and
we've
seen
the
narcotic
requirements
go
down
to
either
nothing
or
dramatically
reduced.
So
I'm
really
excited
about
the
fact
that
maybe
these
people
that
have
been
in
chronic
pain
for
so
much,
if
this
drug
is
used
in
their
pre-operative
for
a
couple
of
days
to
get
it
in
the
system
and
then
postoperatively,
that
we
really
may
be
able
to
get
people
through
this
with
a
lot
less
back
pain
than
the
people
who
came
before
them.
Oh,
that
would
be
amazing.
I
think
across
the
board
for

SPEAKER_01
22:00

Many
people
who
are
so
traumatized
by
surgery
just
in
general,
especially
if
you've
had
multiple
surgeries,
especially
in
the
endometriosis
space,
where
I
think
that
there's
a
lot
of
times
that
there's
so
much
fear
and
trauma
related
to
the
medical
history
that
they
have,
that
when
it
comes
to
something
that
could
potentially
really,
really
help
them,
there's
more
fear
associated
with
taking
that
extra
of
the
pain.

SPEAKER_00
22:23

There's
a
lot
of
fear
of
it
not
working
and
the
disappointment
and
all
of
that.
So,
but
we
I
have
a
lot
of
patients
who
travel
for
treatment,
and
we've
started
to
hear
that
the
it's
the
travel's
much
easier
because
I
started
two
days
before.
Now,
the
literature
says
you
just
have
to
give
a
double
dose
beforehand,
uh,
but
anecdotally,
I've
heard
that
it
takes
a
little
bit
of
time
to
kick
in.
So
I
figure
my
patients
are
struggling
as
it
is.
Let's
give
them
the
pain
meds
for
a
couple
days
before.
And
the
good
news
is
it's
non-addictive,
it's
non-narcotic,
it's
not
sedating,
it's
not
constipating.
Ooh,
that's
a
big
one.
So
the
only
people
that
we've
had
trouble
giving
it
to
are
some
people
on
seizure
meds
has
some
has
some
contraindication
to
that.
It
says
it
does
decrease
the
effectiveness
of
eloquence,
which
is
a
blood
thinner
we
usually
use
for
a
month
slightly,
but
not
in
a
clinically
significant
way.
That
was
studied.
And
it
does
decrease
effectiveness
of
birth
control.
So
most
of
my
patients
who
get
in
iliact
phase
then
are
not
actually
having
intercourse
within
the
first
two
weeks
while
they're
on
drenomics,
right?
Um,
but
it
is
an
important
thing
to
know
in
case
someone
feels
so
good
they
decide
that
they're
going
to
do
this,
uh,
that
it
does
decrease
the
effectiveness
of
their
birth
control.

SPEAKER_01
23:34

So
we've
talked
about
all
of
the
symptoms,
the
management
from
the
stinting
standpoint.

Venous Disease Vs Endometriosis Patterns

SPEAKER_01
23:40

But
I
think
what's
interesting,
and
this
is
the
reason
why
I
felt
like
it
was
so
pertinent
for
us
to
talk,
is
that
you're
seeing
a
lot
of
correlation
with
endometriosis
patients
in
the
venous
disease,
correct?

SPEAKER_00
23:52

Yeah,
I
am.
And
so
I
guess
what
I
would
say
is
that
I
think
endometriosis
is
very
common,
and
I
think
iliac
vein
compression
is
very
common.
So
everyone's
talking
about
nutcracker
and
Maythurner
being
these
rare
diseases.
I
think
they
are
unrecognized
common
diseases.
Okay.
So
in
that
context,
I
guess
what
I
would
say
is
that
we
have
the
luxury
of
many
of
our
patients
already
having
been
extensively
worked
up
for
endo
because
as
ignored
as
endo
is,
pelvic
venous
disorders
are
even
more
ignored,
right?
Or
underdiagnosed.
So
most
of
our
patients
have
had
enosurgery,
and
and
and
and
when
would
we
do
it
without
endo
surgery?
Well,
when
the
GYNs
who
are
endo
experts
feel
like
the
patient
doesn't
have
endo,
but
they
have
classic
symptoms
of
iliac
vein
compression,
I'm
not
going
to
force
them
to
do
unnecessary
surgery
prior
to
potentially
treating
the
patient,
right?
And
you
know,
what
makes
somebody
more
or
less
likely
to
have
endo?
I
mean,
I
would
ask
the
endo
experts.
I
usually
I
do
have
the
patients
see
them,
but
you
know,
if
if
you're
if
your
pain
is
all
day,
every
day,
that
tends
to
actually
be
more
venous
than
endo.
Endo
tends
to
fluctuate
more
with
hormones,
but
venous
disease
also
fluctuates
with
hormones.
If
shutting
down
and
suppressing
the
hormones
makes
all
of
your
pain
go
away,
probably
more
likely
endo
than
venous
disease.
If
the
pain
is
positional,
when
you
stand
up
and
add
gravity
to
the
equation,
if
you
feel
pressure
and
increased
pain,
more
likely
venous
than
endo.
So,
so
venous
is
a
pressure
phenomenon,
and
I
tell
people
it's
plumbing.
Like
putting
in
an
iliac
vein
stent
is
like
taking
the
hairball
out
of
the
drain.
It's
not
flowing
and
it's
flowing,
and
it's
instant,
right?
Now,
sometimes
the
effects
take
a
little
longer
because
people
could
have
central
sensitization
of
pain,
and
we
have
to
reprogram
the
brain
and
these
things.
But
a
lot
of
people
with
lower
extremity
symptoms,
but
no
reflux
in
the
legs,
no
arterial
disease,
no
known
spinal
disease,
feel
immediate
relief
of
pressure
in
their
legs
when
we
stent
them.
Now
they
have
back
pain
and
this
hurts
and
that
hurts
until
we
get
through
all
of
that,
right?
But
uh,
but
there
are
certain
things
that
are
more
suggestive
of
one
than
the
other.
But
honestly,
you
know,
Dr.
Cutchins,
who
I
think
is
an
incredible
human
being,
is
studying
this
as
fast
and
as
hard
as
she
can.
And
I'm
very
jealous
because
she
just
went
out
to
see
Dr.
Klinga
last
month
and
uh,
you
know,
learned
how
to
do
her
whole
neurologic
exam.
And
she's
already
diagnosed
three
people
with
tethered
cord
because
you
can
look
for
clonus,
you
can
look
for
hyperreflexia,
and
how
to
do
this
physical
exam
well
is
something
that
I
need
to
go
visit
Dr.
Klinga
and
learn
myself,
right?
Um,
but
if
we're
always
thinking,
does
this
person
have
endometriosis?
Right,
so
let's
put
this
in
the
context
of
we
think
this
person's
uterus,
ovaries,
and
tubes
are
normal.
Okay,
the
primary
diseases
of
uterus,
ovaries,
and
tubes
are
not
there.
Okay.
Now
we're
talking
about
pelvic
pain.
Okay,
now
we're
talking
about
endometriosis,
pelvic
venous
disorders,
tethered
cord,
maybe
in
rare
instances
where
it's
primarily
bowel
irritable
bowel
syndrome
or
a
bowel
problem,
primarily
bladder,
some
primary
bladder
issue,
right?
But
if
they
have
all
the
symptoms
of
the
back
pain,
groin
pain,
bad
periods,
pelvic
pain,
all
of
this,
then
you're
talking
what
is
more
likely
in
this
patient?
Is
it
iliac
vein
compression,
varicose
vein
disease,
tethered
cord,
or
endo?
If
we
could
all
start
thinking
that
way,
over
time
I
think
we're
gonna
get
better.
And
I
know
there
are
lots
of
people
that
are
working
on
AI
algorithms
where
they
can
put
the
symptoms
in
in
patients
with
chronic
disease
and
try
to
figure
out
which
direction
to
go.
So
Dr.
Huey,
who
is
a
brilliant
interventional
neuroradiologist,
used
to
be
at
Hopkins
and
is
now
in
Hawaii,
uh,
you
know,
he's
helping
me
learn,
you
know,
all
the
symptoms
associated
with
intracranial
compressive
disorders.
Well,
they
overlap
enormously
with
Mae
Thurner
and
Nutcracker.
And
Dr.
Hepworth,
who
does
a
lot
of
jugular
venous
decompression
in
Denver
for
patients
with
jugular
compression
and
eagle
syndrome,
right?
If
he
does
an
Eagle
syndrome
surgery
and
it's
not
working,
and
the
veins
may
still
be
somewhat
abnormal
because
these
are
very
difficult
surgeries.
You're
talking
about
taking
bone
out
in
a
place
where
you
have
to
stay
stable.
I
don't
know
how
these
guys
do
it.
It's
very
challenging
surgery,
and
they're
brilliant
and
patient
and
really
trying
to
help
these
patients,
right?
But
if
that's
not
getting
better,
he
will
entertain
the
concept
that
the
nutcracker
is
rerouting
blood
flow
around
the
spine
and
spinal
cord
and
causing
elevated
pressures
in
the
head,
or
that
the
May
Turner
is
rerotting
through
that
spinal
canal
and
causing
elevated
pressures
in
the
head.
So
the
question
is
how
do
we
determine
whether
somebody
should
have
an
Eagle
syndrome
fixed
first
or
mouse
first,
or
nutcracker,
or
iliac
vein
stent,
or
their
legs,
or
their
varicose
veins?
The
reality
is
uh
is
we
don't
have
all
the
answers
yet.
I
have
my
own
ideas
after
seeing
thousands
of
patients
about
what
works
and
what
doesn't
work,
but
I
break
my
own
rules
in
specific
patients
who
fit
better
into
one
spot
or
another.
And,
you
know,
all
I
can
say
is
that
doctors
are
also
just
human.
And
we
are
trying
our
best
to
help
these
people
with
chronic
disease.
And
we
are
also
not
perfect.
We
don't
have
enough
data,
enough
literature
to
be
perfect
in
everyone.
So
there
are
patients
out
there
that
are
gonna
get
10
endo
surgeries
when
really
what
they
had
was
an
iliac
vein
compression.
At
some
point,
as
this
grows
and
builds,
someone
may
get
an
iliac
vein
stent
when
they
had
endo.
But
the
reality
is
a
lot
of
patients
have
both.
So
that's
gonna
bring
us
full
circle
back
to
where
we
started
talking
about
the
three
musketeers.

Mast Cells Long COVID And Microclots

SPEAKER_00
29:27

Like
they're
gonna
make
fun
of
me
for
saying
that.
But
Dr.
Cutchins
and
Dr.
Vaughn
and
I
have
been
looking
at
this.
Uh,
how
is
this
systemically
related?
Well,
mast
cell
activation
is
uh
like
an
immune
reactivity
response
where
people
get
rashes
in
their
skin
and
a
lot
of
GI
disturbance,
which
is
interrelated.
The
COVID
immune
reactivity
is
a
component
that's
similar,
and
then
the
microclotting.
So
these
guys
are
working
on
helping
figuring
out
the
best
ways
to
stabilize
the
immune
system,
decrease
systemic
inflammation,
contributing
to
all
of
this.
So
we're
talking
H1
blockers,
which
is
like
Xurtec
and
Allegra,
Singulaire.
We're
talking
about
pepsid,
which
is
an
H2
blocker.
These
are
histamine
blockers.
Histamines
make
mast
cells
go
crazy,
right?
We're
talking
about
uh
catophin,
which
is
a
compounded
one,
pycnogenol.
There's
a
lot
of
different
drugs
that
people
are
looking
at,
chromalin,
which
is
a
mast
cell
stabilizer,
and
things
that
can
be
tried
to
help
fix
the
systemic
inflammatory
component
of
this.
Then
Dr.
Vaughn
has
used
anticoagulation
or
blood
thinners,
triple
blood
thinners,
in
fact,
eloquence,
plavox,
and
aspirin.
So
antiplatelet
and
antiblood
thinners
at
the
same
time
to
try
to
um
get
the
blood
flowing
better
through
the
circulation
that's
being
gummed
up
like
this
microclotting.
And
so
with
Dr.
Vaughn's
patients,
you
know,
we
realized
that
80%
of
people
respond
to
this
medical
management
and
this
conservative
therapy,
but
20%
of
people
aren't.
And
when
we
looked
at
those
people,
over
95%
of
them
have
a
severe
iliac
vein
compression.
And
that's
a
few
years
ago
when
I
started
stenting
the
long
COVID
patients.
And
we've
seen
very
similar
outcomes.
We
have
IRB
approval
now
to
do
a
retrospective
review,
not
just
of
our
quality
of
life
outcome
surveys
at
before
and
after
stenting,
but
using
some
of
Dr.
Vaughn's
objective
blood
work
and
data
to
show
the
actual
changes
that
he's
seeing
on
a
molecular
level
before
and
after
iliac
venous
stenting.
And
I
think
that's
what
it's
going
to
take
for
us
to
understand
this
better
and
for
us
to
broadly
get
acceptance
about
these
concepts
within
the
medical
community
who
are
very
skeptical
about
this.
Okay,
so
we
were
talking
a
little
bit
about
the
interconnectivity
of
iliac
vene
compression
and
endo,
right?
Right.
And
I
get
off
on
this
tangent
like
I
do
sometimes,
right?
Talking
about
mast
cell
activation
and
systemic
illness
and
inflammation.
The
reason
I
did
that
is
because
when
I
was
at
the
uh
International
Society
for
the
Study
of
Women's
Sexual
Health
giving
a
talk
where
Dr.
Cutchins
was
also
giving
a
talk,
I
actually
learned
something
really
cool
from
her,
which
is
that,
you
know,
if
you
look
at
endometrial
biopsies
in
general,
there's
like
a
mast
cell,
right?
But
if
you
look
at
endometriosis,
there's
this
lining
of
mast
cells
along
the
neurovascular
bundle
from
pathologic
samples
from
endo.
So
we
know
that
there's
interconnectivity
between
this
underlying
inflammatory
problem
and
these
pain
syndromes.
And
if
we're
seeing
mast
cells
all
along
the
endo,
we
actually
think
that
there
may
be
increased
mast
cells
in
the
veins
or
the
vein
walls
that
are
contributing
in
a
similar
pathology
that's
affecting
both
of
these
things.
This
is
pure
speculation
at
this
point.
We
have
a
lot
of
work
to
do
to
look
into
how
this
is
interconnected.
But
I
guess
what
I'm
saying
this
for
is
that
I
think
the
patients
that
have
underlying
connective
tissue
disorders
and
underlying
inflammatory
problems
like
mast
cell
activation,
they
really
deserve
to
get
a
clinical
evaluation
and
stabilization
of
the
inflammatory
and
immune
problem
a
little
bit
before
we
consider
putting
in
a
stent,
or
maybe
even
before
considering
get
endosurgery,
although
I
don't
know
that
I'm
not
an
expert
in
that.
Right.
Because
I
think
these
patients
will
have
an
easier
recovery
and
less
of
a
negative
systemic
response
to
the
insult
of
the
procedure.
Yes.

SPEAKER_01
32:56

I
well,
I've
I
think
a
lot
of
people
coming
out
of
endosurgeries
have
a
lot
of
mast
cell
issues,
which
that
makes
a
lot
of
sense
in
that
regard.

SPEAKER_00
33:05

So
if
we
do
some
mast
cell
stabilization
before
endosurgery
or
before
stenting,
and
then
if
we
use
gernavics,
we
might
be
able
to
make
this
a
game
changer
in
how
people
recover
from
endosurgery
and
iliac
venous

Pelvic Floor Varices And Pudendal Pain

SPEAKER_00
33:17

stenting.
Now,
embolization
of
varicose
veins,
I
do
not
know
for
the
life
of
me.
Actually,
I
do
know,
but
I
don't
really
know.
I
could
say
I
don't
know
for
the
life
of
me
why
there's
so
much
fear-mongering
about
coil
embolization
and
foam
sclerotherapy
of
varicose
veins.
It
is
incredibly
benign.
Yeah.
But
the
one
time
that
it's
not
is
when
patients
have
pain
from
varicose
veins
along
the
neurovascular
bundle.
So
this
is
a
concept
people
don't
get.
The
nerves,
arteries,
veins,
and
lymphatics
run
together.

unknown
33:46

Right?

SPEAKER_00
33:47

Nerves,
arteries,
and
veins
run
together
in
a
neurovascular
bundle.
So
think
about
the
cable
going
through
the
wall.
Right.
And
then
when
it's
got
to
go
up
through
the
ceiling,
there's
a
little
fixed
space
or
a
hole.
Then
it
goes
up
in
the
ceiling,
it's
got
lots
of
space,
and
then
it's
got
to
come
down
in
another
room
and
it's
got
a
really
fixed,
tight
little
hole.
So
in
all
these
places
where
there
are
fixed
spaces
that
the
neurovascular
bundle
runs
through,
I
think
that
we're
seeing
dilated
veins
compressing
the
nerves.
So
a
lot
of
pudendal
neuralgia,
I
believe,
is
from
dilated
veins
in
the
neurovascular
bundle
along
the
pudendal
nerves.
And
the
reason
I
believe
that
is
that
we've
created
a
protocol
to
look
with
ultrasound
in
the
perineum
and
the
pelvic
floor.
When
we
do
a
transvaginal
ultrasound,
we
stick
the
probe
through
the
vagina
up
into
the
pelvic
floor.
And
these
veins
we
find
by
looking
in
the
skin
between
the
legs,
following
that
rectal
signature
that
looks
like
a
donut
around
on
ultrasound.
And
in
the
posterior
wall
of
vagina,
behind
the
vagina
and
in
front
of
the
rectum,
we
see
dilated
veins
that
are
really
um
pudendal
branch
veins
in
the
perineum,
right,
that
are
dilated
and
refluxing.
Sometimes
five
or
six
millimeters,
which
is
huge
for
a
vein
down
there
when
we
don't.
We
think
in
normal
people
we
don't
see
any
veins
are
visible
on
ultrasound,
although
we
need
to
prove
that
also.
But
in
all
these
women
with
vulvadinia,
pain
with
intercourse,
pressure
in
the
pelvic
floor,
perianal,
perirectal
pain,
right.
When
we've
done
an
ultrasound
in
the
perineum,
we
frequently
see
dilated
refluxing
veins.
And
so
we
have
a
technique
where
we
use
ultrasound
and
put
a
21
gauge
needle,
which
is
a
very
small
needle,
it's
long,
but
very
small,
with
the
patient
sedated
and
asleep
under
it
into
those
dilated
veins,
and
we
do
a
venogram,
which
is
injecting
X-ray
dye,
and
we
watch
the
whole
pelvic
floor
light
up
with
varicose
veins.
And
those
varicose
veins
drain
either
through
the
internal
pedendal
vein,
up
along
the
pelvic
sidewall
on
both
sides,
or
through
the
obturator
vein
towards
the
hips
on
both
sides.
So
I
see
frequently
correlation
of
doing
that
injection
in
someone
with
terrible
left
hip
pain
who's
already
been
stented.
Right.
I
see
all
the
varices
drain
through
the
obturator.
I
see
people
with
pendal
pain,
pelvic
sidewall
pain,
drain
through
the
internal
pudendal.
And
I
can
almost
guess
what
those
drainage
pathways
are
going
to
look
like
when
I
do
the
venogram
based
on
the
patient's
symptoms.
And
it
also
causes,
we've
I've
had
a
couple
of
patients
with
PGAT
or
persistent
persistent
genital
arousal
disorder
where
they've
had
big
dilated
veins
around
the
clitoris,
and
you
put
a
small
butterfly
needle
in,
do
a
foam
sclerotherapy
injection,
and
it
resolves.
Interesting.
So
I'm
not
saying
these
are
the
only
causes
of
these
problems,
but
we
just
submitted
uh
an
abstract
to
RSA,
Radiologic
Society
of
North
America.
I
don't
know
if
it's
going
to
get
accepted,
but
looking
at
what
this
ultrasound
protocol
that
we're
doing,
and
then
looking
at
the
data
on
127
women
that
we
did
this
direct
stick,
we
call
it
a
direct
stick
approach
to
treating
their
pelvic
fluorices,
and
looking
at
their
quality
of
life
outcomes.
And
guess
what
we
saw?

SPEAKER_01
36:50

Better
quality
of
life.

SPEAKER_00
36:51

A
statistically
significant
improvement
in
their
quality
of
life
outcomes
at
three
months
that
lasted
to
a
year.
And
I
will
tell
you
that
these
changes
in
these
quality
of
life
surveys
are
very
similar
in
the
amplitude
of
the
change
and
the
length
of
the
change,
the
time
it
takes
to
change,
and
the
amount
of
time
that
it
lasts
so
far.
So
right
now,
we
really
believe
that
treating
the
iliac
vein,
treating
these
pelvic
floor
veins,
treating
nutcracker
are
really
going
to
do
the
majority
of
the
work
on
patients
with
back
pain,
pelvic
pain,
bladder,
bowel,
flank,
and
upper
abdominal
pain,
and
POTS
or
orthostatic
symptoms.
Now,
when
you
start
adding
in
EDS
and
you
start
adding
in
an
intercranial
compressive
disease
and
cranial
cervical
instability
and
CSF
leaks,
now
you've
got
a
whole
bigger
can
of
worms.
Right.

Resources Age Limits And Conservative Care

SPEAKER_00
37:37

But
we
started
a
nonprofit.
It's
called
Sapphire.
I
hope
I'm
allowed
to
plug
my
nonprofit
on
here.
It's
uh
S-A-F-I-R-E
dot
health.
And
you
know,
you
said
I'm
funny,
and
I
am
funny,
because
you
know,
in
medicine,
this
is
a
very
like
serious
world
of
very
sick
people.
So
so
my
personal
little
thing
I
did
is
name
all
my
companies
or
my
things
now
after
gemstones.
So
I
can
be
an
old
lady
with
big
fat
rings.
So
our
management
company
is
called
Opal,
Outpatient
Practice
Administration
LLC.
Now
my
nonprofit's
called
Sapphire,
which
stands
for
Spencer's
Association
for
Interventional
Research
and
Education.
And
uh,
and
so,
you
know,
I
don't
know,
we're
gonna
have
to
open
some
more
companies.

SPEAKER_01
38:17

Well,
you
can
be
more
creative
that
way.
You
can
start
making
all
the
gyms.

SPEAKER_00
38:21

So
if
it
does
make
sense
why
it's
called
that,
now
you
know.
No,
I
know.
But
but
really
what's
on
the
nonprofit
is
a
two-minute
video
from
experts
in
each
of
these
spaces,
a
written
explanation
for
what's
going
on
in
patient
speak
and
in
doctor
speak.

SPEAKER_01
38:36

Okay.

SPEAKER_00
38:37

And
uh
that's
there
for
EDS,
mouths,
SMS,
neck
cracker,
tethered
cord,
pots,
long
COVID,
pelvic
pain,
chronic
DVT,
and
we're
working
on
an
endometriosis
section.
Perfect
as
we
speak.

SPEAKER_01
38:51

I
love
that
for
all
of
us.
I
know.

SPEAKER_00
38:54

Well,
we
just
have
to
get
the
smart
endo
people
to
do
it.
I
know
people.
And
at
the
end
of
each
of
these
sections,
there's
a
reference
list
if
people
want
to
read
the
articles.
This
has
come
from,
because
as
much
as
we
say
there's
no
data
and
no
evidence,
we're
still
trying
to
practice
evidence-based
medicine
wherever
evidence
exists
and
where
it
doesn't
exist,
we're
working
really
hard
to
add
to
that
pool
of
literature.

SPEAKER_01
39:15

When
we
talk
about
stinting,
specifically,
and
and
I
don't
want
to
get
too
into
the
weeds
of
this,
but
is
there
an
age
limit
or
minimum
that
you
would
stint
someone?
You
know
you're
setting
me
up.

SPEAKER_00
39:28

I
am
a
little
bit
heavily
scrutinized
across
the
world.
I
am
a
little
bit,
but
this
is
a
big
one.
We've
talked
a
little
bit
about
it.
I
don't
think
that
people
that
aren't
studying
this,
doing
this
regularly
and
consistently,
and
this
isn't
a
big
part
of
their
practice,
yeah,
should
probably
not
be
stinting
young
people.
Right.
That
being
said,
who
am
I
to
judge
which
doctors
are
comfortable
with
that,
willing
to
do
that?
I
mean,
I
think
it's
critically
important
if
you
have
a
12
or
a
13-year-old
and
they've
dropped
out
of
school,
they're
debilitated,
they're
in
pain
every
day,
they
can't
walk
across
their
living
room
because
they're
passing
out,
they
have
severe
abdominal
pain,
food
fear,
nausea,
vomiting,
they
have
horrible
pelvic
pain,
back
pain,
leg
pain.
They
need
to
be
evaluated
for
endo,
they
need
to
be
evaluated
for
tethered
cord,
especially
when
they
have
headaches
and
intracranial
stuff,
right?
They
need
to
be
evaluated
for
iliac
vein,
compression,
and
nutcracker,
and
then
a
team
of
experts,
all
of
whom
provide
therapies
for
these
problems,
need
to
get
together
and
decide
who
goes
first.
But
leaving
an
11
or
12-year-old
to
deteriorate
every
year,
year
over
year,
to
become
suicidal,
some
of
whom
have
committed
suicide,
even
at
a
young
age,
and
do
nothing
for
them,
to
me
doesn't
feel
more
responsible
than
a
very
thoughtful
and
educated
and
collaborative
approach
to
try
to
decide
what's
best
for
that
child.

SPEAKER_01
41:01

Yeah.
I
would
agree.

SPEAKER_00
41:03

There's
my
political
answer
of
not
answering
exactly.

SPEAKER_01
41:06

I
know
exactly
We'll
leave
it
to
the
expert
experts
who
do
this
day
in,
day
out.
This
is
what
they
commit
their
lives
to.
I
think
we
see
that
we
say
the
same
thing
with
endometriosis.
It
is
better
to
have
someone
who
knows
this
inside
and
out
than
to
have
someone
who
thinks
they
know
it.

SPEAKER_00
41:22

Well,
and
I
think
the
problem
is,
you
know,
I
mean,
who
am
I
to
judge?
People
might
say,
why
are
you
the
expert?
And
um,
you
know,
the
reality
is
I've
spent
my
life
studying
the
venous
space
and
I've
given
up
everything
else
I
do
and
dedicated
the
rest
of
my
career
and
life
to
working
on
this
problem
because
the
need
is
that
big.

SPEAKER_01
41:39

Yeah,
I
agree.
I
agree.
Are
there
ways
I
know
some
people
are
like,
I'm
not
quite
ready
to
approach
this.
Are
there
ways
of
managing
venous
disease
in
a
more
conservative
way?

SPEAKER_00
41:53

Oh,
absolutely.
So
I
talk
to
lots
of
patients
where
I
tell
them,
listen,
you
have
this
anatomy,
but
you've
got
crazy
mast
cell
activation
that
hasn't
been
addressed
at
all.
You've
got
some
of
these
other
things
going
on.
So,
you
know,
the
basic
therapies
for
orthostatic
issues
in
general
are
IV
fluids
and
hydration,
which
you
can
teach
people
about,
compression
stockings.
Think
about
it.
Why
does
compression
in
the
legs
and
the
abdomen
help
people
with
pots
so
much
if
it's
not
a
vascular
problem?
Right.
Right.
So,
you
know,
and
then
their
medications
they
can
do
to
try
to
control
POTS
while
they
do
the
rest
of
the
work
to
see.
Let's
make
sure
they
don't
have
Lyme's
disease
that's
undetected
and
untreated.
Let's
make
sure
they
didn't
have
Epstein
Barr.
Let's
make
sure
that
they
don't
have
a
chronic
viral
or
post-infectious
issue
that
has
not
been
addressed,
treated,
or
done
any
conservative
management
for.
So
these
are
the
other
things.
I
mean,
I
keep
saying
long
COVID,
but
for
me,
it's
all
encompassed
in
the
same,
same
place.
Carrie
Hodges
is
a
nurse
practitioner
who
works
with
Dr.
Vaughn,
who's
brilliant
at
these
infectious
disease
problems.
And
I
I
there
are
lots
of
other
people,
Dr.
Kaufman
and
Dr.
Maxwell
at
the
Societies
for
Chronic
Disease
in
California,
and
um,
you
know,
Dr.
Ruhoy
in
New
York
is
doing
it,
and
I'm
gonna
forget
mentioning
one
of
my
good
friends
who
sends
me
people
and
works
with
me
on
this
and
has
taught
me
so
much,
I'm
sure,
somewhere
in
there.
But
there
are
a
lot
of
pioneers
across
the
country
and
different
subspecialties
working
together
on
this.
And
um,
I
just
think
we
have
to
keep
going.

SPEAKER_01
43:18

Yeah.
What
are
you
most
hopeful
for
moving
into
the
future
in
the
next
five
to
ten
years
in
this
space?

SPEAKER_00
43:26

Yeah.
Well,
what
I'm
terrified
about
and
hopeful
for
is
that
we
find
a
way
to
medically
heal
the
endothelium
to
stop
the
damage
and
to
reverse
many
of
the
people
so
they
don't
need
a
stent.
Right.
Okay,
so
this
is
this
is
my
practice,
but
I
will
tell
you
right
now,
I
will
stop
stenting
people
tomorrow
if
we
find
a
way
to
fix
this
problem
otherwise.
There
have
been
no
good
surgical
solutions.
In
Japan,
they're
doing
3D
printing
of
stents
to
put
outside
the
vein.
It's
not
available
here
or
anytime
soon,
and
patients
are
sick.

SPEAKER_01
43:58

Yeah.

SPEAKER_00
43:58

In
Germany
and
some
places.
Places
in
the
US,
they've
done
some
external
stenting
around
the
iliac
vein.
I
haven't
seen
that
work
very
well.
I've
had
to
internally
stent
a
lot
of
people
who've
had
that
procedure.
I
know
in
Germany
they've
reported
some
good
outcomes,
but
that's
a
big
open
surgery
as
opposed
to
an
internal
stent
where
we
have
very
good
long-term
patency
at
this
point
with
the
stents.
And
I
think,
you
know,
that's
not
an
improvement,
right?
So
where
are
the
improvements
going
to
come?
They're
going
to
come
in
us
understanding
medically
what's
happening,
figuring
out
how
to
reverse
as
much
of
this
as
possible,
and
then
reserving
the
invasive
procedures
of
stenting
and
mouth
surgery
and
auto-transplant
of
the
kidneys
for
nutcracker
and
stenting
the
brain
for
the
people
who
don't
respond.
And
I
think
Dr.
Vaughn
and
Dr.
Cutchins
have
done
a
great
job
of
that,
where
they
are
doing
optimal
medical
management.
Everyone's
talking
now
about
microdosing
GLP1s
and
using
peptides.
It's
made
a
huge
difference
in
a
lot
of
people.
Yep.
And
so
I'm
a
big
fan
of
optimizing
medical
management
before
we
move
forward
with
interventions.
So
I
mean,
I
know
that
there's
a
perception
that
I
jump
right
to
stenting,
but
I
was
even
talking
to
Dr.
Vaughn
a
couple
of
days
ago.
And
I
don't
think
I've
ever
stented
a
long
COVID
patient
that
was
treated
for
less
than
four
to
six
months
with
no
response
medically.
Interesting.

SPEAKER_01
45:11

Well,
I
feel
like
it
this
points
to
it
being,
I
mean,
we
I
talk
about
this
a
lot.
We
often
work
in
silos
in
this
in
the
health
industry
as
a
whole.
But
I
think
what
this
leads
to
even
more
and
pointing
to
is
that
it
we
have
to
work
as
a
whole-body
systemic
person.
Like
we
aren't
one
arm,
we
aren't
one
leg,
we
aren't,
you
know,
one
kidney.
Maybe
some
people
have
one.
Most
people
don't.
Is
that
we
have
to
work
look
at
the
whole
big
picture.
And
I
think
that's
what
you've
done
so
beautifully
in
what
you
are
doing
is
that
you're
looking
outside
of
what
has
norm,
what
is
normal,
what
is
normal
for
you
to
have
to
look
at
in
your
career
path,
and
you're
saying
that's
not
good
enough.
We
have
to
do
better.
And
I
think
that
as
a
patient,
from
a
patient
perspective,
I
appreciate
that.
And
that's
why
I
appreciate
you
so
much
going
out
on
a
limb
all
the
time,
committing
yourself
tirelessly
to
something
that
most
people
don't
want
to
look
at
or
deal
with
because
it
is
challenging.
And
so
from
a
patient
perspective,
thank
you
so
much
for
continuing
the
fight.
And
just,
I
mean,
as
I
and
I'm
not
your
patient,
maybe
you
know,
yeah,
yeah.
But
but
to
look
at
that
and
say,
this
is
a
bigger
picture
than
than
just
what
teaches.

SPEAKER_00
46:25

You
know,
you
know,
rather
than
us
being
critical
of
the
doctors
who
aren't
comfortable
in
this
space,
I
I
think
we
have
to
look
at
it
as,
you
know,
I
mean,
I've
dedicated
the
last
six
years
of
my
life
to
doing
this.
Yeah.
We've
created
infrastructure
and
our
practice
to
be
able
to
take
pages
and
pages
and
pages
of
documentation,
evaluate
them,
assess
them,
put
together,
review
them,
review
imaging
before
we
see
a
patient.
I
have
a
team
of
nurse
practitioners
who
do
the
initial
intake
for
us.
I've
filmed
a
video
on
the
pathophysiology
that
all
those
patients
get
to
watch
because
if
I'm
gonna
treat
as
many
people
as
we
can,
I
can't
do
all
of
the
clinical
work.
But
I'm
trying
to
create
an
army
out
there
of
people
who
can
help
me
do
this.
And
we
are
expanding
and
growing
quickly.

SPEAKER_01
47:05

Yes.

SPEAKER_00
47:06

And
my
hope
and
prayer
will
be
that
if
this
continues
to
go
in
a
positive
direction,
that
we'll
be
able
to
open
centers
regionally
across
the
country
where
all
this
infrastructure
is
automatically
in
place,
where
the
access
to
care
is
getting
easier.
We're
implementing
things
that
can
help
us
do
these
things
more
quickly
and
more
efficiently.
And
so
um,
so
I
don't
blame
the
doctors
who
don't
see
a
large
population
of
these
complicated
people
for
not
feeling
comfortable
getting
involved.
Yeah.

unknown
47:32

Yeah.

SPEAKER_01
47:33

You
have
to
really
dedicate
more
than
what
a
lot
of
times
they're
able
to
do.

SPEAKER_00
47:37

Well,
gosh,
what
I've
learned
in
the
last
four
or
five
years,
what
I
knew
five
years
ago
is
nothing
compared
to
what
I
know
now.
And
so
I
think
about
the
people
who
haven't
spent
any
time
in
this
space
learning
this,
and
it's
no
wonder
they're
so
skeptical.
Yeah.
I

The Bladder Pain Case That Proved It

SPEAKER_00
47:51

I
remember
one
of
the
first
times
I
realized
that
bladder
symptoms
were
associated
with
iliac
vein
compression
for
sure,
was
uh
a
19-year-old
girl
who
had
severe
bladder
symptoms
from
age
seven,
so
12
years,
dropped
out
of
high
school,
five
peridium,
which
are
numbing
pills
for
the
bladder
a
day,
full
urologic
workup,
pelvic
floor
workup,
pain
people,
urologists,
roctologists,
everyone
involved.
And
the
gynecologist
sent
the
patient
to
our
practice.
And
in
fairness,
my
partner
at
the
time,
uh,
one
of
the
guys
I
used
to
work
with,
who's
a
wonderful
physician,
just
said,
you
know,
you're
19
years
old,
all
you
got
is
bladder
pain
and
urgency
and
frequency.
Like,
I'm
not
gonna
stent
you.
Set
it
back
to
the
gynecologist,
said
you
have
to
do
an
endosurgery
first.
The
patient
went
through
an
unnecessary
endosurgery
that
was
completely
negative,
set
her
way
back
in
terms
of
the
bladder
symptoms,
and
then
finally
they
begged
me,
and
I
said,
You
have
to
know
that
this
is
way
out
there.
I
stented
her,
and
within
one
month,
she
was
off
peridium,
her
bladder
symptoms
completely
resolved.
And
then
she
is
one
of
our
less
than
1%
of
people
who
developed
a
clot
in
her
stent.
It
turned
out
she
had
an
underlying
blood
clotting
disorder
we
didn't
know
about.
But
the
way
we
knew
her
stent
clotted,
all
of
her
symptoms
came
back.
Interesting.
And
we
looked
in
the
stent
had
clot,
we
took
the
clot
out
of
the
stent,
put
her
back
on
blood
thinners
for
about
six
months,
all
of
her
symptoms
resolved
after
taking
the
clot
out
of
the
stent,
and
she's
now
six
years
out
from
treatment,
and
she's
not
on
blood
thinners,
and
she's
doing
fine.
So
you
could
look
at
that
and
say,
you
know,
you
took
a
19-year-old,
you
did
this
experimental-ish
procedure
to
her,
and
she
got
a
clot
and
had
a
complication,
and
all
that's
true,
but
she
had
no
life,
and
she
has
a
life,
and
she
will
have
longevity
of
this
stent
at
this
point.
So
the
journey
is
not
perfect,
right?
And
we're
not
perfect,
and
there's
no
guarantees
for
anything
we
do
in
sick
people.

SPEAKER_01
49:51

Yeah.

SPEAKER_00
49:52

But
but
if
we
can
keep
the
complication
rate
down
to
a
minimum,
and
if
we
can
care
and
help
manage
people
through
that,
I
don't
know
what
else
we
can
do
for
these
people
with
debilitating
disease.
Yeah.

SPEAKER_01
50:04

And
this
is
in
and
of
itself,
I
think,
giving
a
lot
of
people
a
new
lens
to
look
through
to
potentially
find
that
hope
and
healing.
Because
I
think
that
until
now,
this
has
been
something
that
has
been
not
even
on
the
forefront
of
many
people's
minds,
including
providers,
because
they
they
haven't
been
taught
any
different.
So
this
is
a
good
learning
curve.
It's
a
good
lesson
for
us
to
all
step
back
and
take
perspective
of.
And
so
I
just
thank
you
for
allowing
me
the
time
to
sit
with
you
and
learn
this
because
I'm
fascinated
by
it.
I'm
always
well,
thank
you.

SPEAKER_00
50:38

And
uh
I
am
a
Bain
nerd,
and
uh
it's
really
important
that
I
learn
from
my
other
colleagues
and
people,
and
you've
introduced
me
to
a
lot
of
the
endometriosis
world
that's
been
wonderful
to
collaborate
with,
and
I've
learned
a
lot
there.
Yeah.
I
still
have
a
lot
more
to
learn.
We
all
do.
But
I
think
if
what
we're
doing,
if
we're
doing
this
for
the
right
reason
because
we
care
about
patients
and
patient
outcomes,
yeah,
and
we
keep
studying
it
and
we
keep
adjusting
as
we
have
to,
as
we
get
smarter
and
better.
Yeah.
It'll
be
a
better
place.
It'll
be
a
better
place
for
people.
I
I
mean,
I
estimate
honestly,
there's
got
to
be
10
to
20
million
people
in
the
country
suffering
from
this.
That's
a
lot
and
there's
a
lot
of
men.
And
we
haven't
published
that
data
yet,
but
we're
working
on
it
right
now,
and
we
have
a
lot
of
men.
And
I
got
the
men
through
uh
hiring
an
incredibly
talented
nurse
practitioner,
Carrie
Waddell,
who
used
to
work
with
Nel
Gehrig,
who
was
like
one
of
the
world
experts
in
pelvic
floor
pain
her
whole
career.
And
she
retired.
And
so
I
got
Carrie.
And
Carrie's
very
knowledgeable
and
does
special
pelvic
floor
evaluations,
injections,
medications,
and
really
helped
people.
But
she
brought
a
lot
of
men
with
her
over
to
the
practice.
And
when
we
went
back
and
looked
at
their
MRIs
they
had
done
for
pudendal
neuralgia
that
were
all
called
normal,
they
had
massively
dilated
veins
around
their
pudendal
nerves,
and
most
of
them
had
iliac
vein
compression.
So
we
started
treating
the
men,
and
we've
seen
similar
results
in
the
men,
and
we'll
be
publishing
that
soon

Closing Thanks And Keep Advocating

SPEAKER_00
52:00

as
well.

SPEAKER_01
52:00

That's
fascinating.
Thank
you
so
much.
Thank
you.
I
love
spitina.
It's
good
to
see
you.
I
know
it's
always
fun
to
see
you.
It's
always
a
pleasure.

SPEAKER_00
52:06

We'll
have
to
do
another
uh
what
do
you
call
the
thing?
The
limbo
thing.
Oh,
you
did
the
limbo.
I
didn't
do
the
limbo.
Well,
I
I
I
did
better
than
I
thought
I
would,
but
man,
the
girl
who
won
that
was
impressive.
She
must
be
Bendy.

SPEAKER_01
52:18

Yeah,
I
think
she
is.
And
I'm
always
excited
to
see
you.
I'm
glad
that
we're
not
that
far
from
each
other
and
we
get
to
maybe
do
more
today.
Oh,
we
could
do
it
again.

SPEAKER_00
52:27

We'll
do
an
update
when
we
get
the
next
few
papers
puppets.

SPEAKER_01
52:30

We'll
do
an
update.
Perfect.
That
sounds
good.
Thank
you.
Until
next
time,
everyone,
continue
advocating
for
you
and
for
others.