WEBVTT Hey, this week join me Dr. Robert Hacker and Dr.Ā Eleanor Stein.
Weāre gonna talk about something a little bit interesting. Itās
dysautonomia and compressive syndromes, pot syndrome, Nutcracker
syndrome, Erner syndrome, connective tissue disease, pelvic congestion
syndrome, something that really is under focused on in the community,
and I think that we can help. Welcome to the Dr.Ā Eleanor Stein podcast.
In this show, you will hear expert medical professionals, researchers,
and people with lived experience share science-based low to no cost
strategies to help people with complex chronic diseases. Listen in for
another dose of education, empowerment, and hope. Hi everybody. Iām Dr.
Ellie Stein, welcoming you to this episode of the Dr. Eleanor Stein
podcast. Today weāre gonna talk about a condition which you may not have
heard of. I only recently became aware of it myself, and itās called
Vascular Compression Syndromes. Itās a group of relatively rare
conditions, which just happen to be more common in people with complex
chronic diseases, especially those with autonomic dysfunction. Weāre
gonna get a primer today from vascular surgeon, Dr. Robert Hacker, and I
will be learning right along with you. Iām gonna be thinking back to
patients Iāve worked with over the last 25 years and trying to
understand whether maybe some of them suffered from this condition, and
I missed it because of lack of awareness. Dr.Ā Hacker, uh, vascular
surgeons go to school for a really long time. So from what I can tell
from his, uh, cv, he was in school for about 16 years before becoming a
fully fledged VA vascular surgeon in 2014 at the University of
Pittsburgh, he is board certified in both general and vascular surgery.
And since graduating, heās worked in various roles, published papers,
spoken widely around the world. And in 2023, he founded a new vascular
surgical practice, and maybe heāll tell us a little bit about that. Um,
currently located in St. Louis, Missouri, heās won several awards, not
only for excellence in surgery, but also excellence in patient care,
being compassionate, even being on time. I, i, that one jumped out at
me. What I value about Dr. Hacker, from what Iāve learned so far, is his
curiosity. So Iām gonna start by asking him how he became interested in
vascular compression syndromes, because itās a condition that could give
some answers to some people in our community that have really been
suffering. So, Dr.Ā Hacker, welcome to the podcast. Well, thank you for
the invitation and thank you for the honor to, uh, speak to the
audience. You are so welcome. So when I looked up, uh, you sent me your
CV and I looked up some of your papers and they were on pretty
conventional vascular surgery topics like repairing femoral veins and
arteries and stuff like that. But now youāre really diving deep into
venous compression syndromes. And Iām just curious, how did you kind of
make the shift? Yeah, so itās really interesting actually. It kind of
goes back to the way, uh, the academic and, uh, training programs are
focused. So in America, at least, you know, thereās a big push for
residents in any specialty to pay attention to patients who are being
treated and write papers. And that usually creates what used to be a
very traditional surgeon scientist pathway. Um, in the vascular surgery
community, thereās a lot of emphasis, and I mean, I would say 80% or 90%
of most peopleās interest falls into the arterial. Uh, and itās very
common misunderstood in um, term in the population. But just to remind
everyone, the arteries are the blood vessels that have the oxygenated
blood or technically are leaving the heart if you wanna be a purist,
because the CT surgeons would say, what about the right ventricle
pulmonary artery? So the vessels leaving the heart are the arteries.
They are high pressure. Thereās a lot of them. The repairs are
complicated and they, they get the vast majority of the, uh, focus of
trainees and programs, papers that are written and veins are have, even
by me, were perceived as a lesser system once I had pivoted and left the
academic pathway and started my own business. Well, in private practice,
youāre going to see not the emergencies anymore, which are the artery
stuff Youāre seeing the more bread and butter daily people walking
talkies coming into your office needing a vascular consultation. And
there was a huge emphasis from veins, went from 10% of my practice to
60% of my practice, 70% the first year. Yeah. And then of course when
you see that type of volume, you start seeing patterns and conditions
that you had never been exposed to before. And that kind of got us
started on the whole compression pathway initially. Thatās so
interesting. And Iām sure itās true in other areas of medicine that
academic medicine is doing the things that are kind of sexy or high
profile. Like if you burst an artery, youāre in big trouble and I think
you need emergency surgery right away. Right. To even Yeah. Have chance
to survive. Yeah, exactly. So itās very high profile and, you know, uh,
emergent and acute. But then when you move to everyday practice with
kind of regular people, theyāre more interested in their veins. So what
would be some of the, um, just kind of to give people a bit of a
background, what are some examples of venous problems that people come
in with? Uh, well, we do both, but on the venous side, uh, the big, uh,
venous stuff, our painful legs, achy legs, uh, varicose veins, uh, a lot
of pregnant women with varicose veins, a lot of postpartum women with
varicose veins, workers, men with varicose veins, veins that bleed. Um,
these lead to, uh, inflammation pathways where people might get, um,
skin discoloration of their legs. Uh, I think if you were to go and, um,
look at other individuals, you would say, Hey, I think I know someone
whoās got, uh, a brown discoloration of their leg or a, uh, wound on
their leg. Right. Um, these are the venous ulcers, uh, bleeding of
varicose pains. You see this whole onslaught. And what we realized is if
you really sit down and dig into it, thereās a whole group of women, not
really men, uh, who may have POTS syndrome. Um, they may have left leg
heaviness, not the right leg. They may have pelvic congestion syndrome,
which is also very under publicized in the female community, very poorly
understood in the OB GYN community. And weāre really starting to see
that all these things are linked together and I think grossly
misunderstood. And then of course, we have all the basic arterial stuff.
Yeah. Okay. So can you just kind of name the main compression syndromes
that you see and how you would spot them? Like what would a patient come
in complaining of that would kind of, uh, be a red flag for you that
maybe compression is part of the problem, but maybe start by saying what
it is exactly. Sure. So when, uh, you flip open an anatomy book, you
have to recognize we have two legs, but we have one heart. So we have
one tube coming down from the heart, and then it splits. And then we
have two legs and one venous return system. So we have two veins coming
up, coming back together, and then going back to the heart on the other
side of the spine. So this is the aorta and the inferior vena cava.
Well, weāre all anatomically built such that our arteries are on the
outside of the legs and the veins are on the inside. And what this leads
to is a natural kind of crossing over just below the belly button called
the iliac bifurcation. And the iliac is just the medical name of what we
call the new branched vessels after the aorta. And the IVC. So this is
99% of the people are built this way. Thereās few people who are
anatomically slightly different. And I would say in a vast majority of
the patent patient population, nobody has a problem with this. But what
weāll find is, uh, Iām still unsure, and this is where some of our
research is going, is, do you grow into compression? Do you shift into
compression where you always set up com with compression if you have it,
and now you become symptomatic? Itās unknown because thereās not much
data on it. Uh, the original papers go back to the sixties, a guy by the
name of May and, and Dr. Thoner, um, and they had this syndrome called
Mayner syndrome, and they noticed a compressive syndrome, um, way back
in the sixties, uh, where the, uh, right artery compresses the left
vein. Mm-hmm. And this is known, if you ask most doctors, theyāre
unaware of this, but itās known in the vascular community, but it was
felt to only be a cause of significant left leg clots. Right. So weāve
identified patients who, when you really sit and talk to them, theyāll
complain of left leg swelling worse than the right when theyāre coming
with their varicose veins, or theyāll only have left leg varicose veins
and no right leg varicose veins. Um, we started noticing a big
correlation between these compressive syndromes and patients with
dysautonomia, not just pots, but I would say subclinical pots. Uh, I
believe the term POTS is very specific, but I think dysautonomia really
triggers into a, uh, broader category of yet to be fully defined, uh,
pathologies. So what weāll see is, um, these compressive syndromes in
the, um, in the, uh, dysautonomia patients. So If I can just, um, jump
in for a minute. So itās com the vein is being compressed ācause the
veins are kind of floppy. Right. They donāt have the rigid, uh, walls
that arteries have. So itās e like you, it would be hard to compress an
artery. Right. You would have to put a lot of Pressure on it. Yeah. So,
so to give you an idea, uh, if you were to take a piece of paper, uh, I
happen to have an envelope here of here. Hereās an envelope. A vein is
thinner than the edge of an envelope. Itās Wow. Very thin, very rigid.
And it was meant to be a low pressure, high volume system. So it can
take a ton of blood, but itās low pressure. So, um, if you think in
millimeters of mercury, so if I took a little thermometer and I stacked
it up a millimeter of mercury, a a vein is meant to be between one and
12 millimeters of mercury at rest. And an artery is your systolic blood
pressure one 20 over 70. And so the arteries are very thick, theyāre
very robust. And if you were to put the two next to each other in the
competition, the artery wins every single time. Okay. So the compression
is actually being caused by the artery compressing the vein. Correct.
Itās a, itās an anatomic closeness. And, uh, where we see the patients
who donāt have, which is most people who donāt have it, thereās just
enough space in the way that the vein and the artery interact right in
the pelvis that allows the vein to drop out, like running off the edge
of a cliff. Uh, the vein just kind of sinks right down really quickly
and isnāt exposed to this compression. And in the patients that we see
compression with the, the, the splitting or the bifurcation is a little
bit higher up and a little bit shifted over so that it can affect Yeah,
the, the, the actual sacrum or the bony prominence of the pelvis is
actually creating the other side of the compression. So you have this
soft structure between a bone below and an artery above. Mm-hmm. And
then squished. Got it. They also find nerve May, oh, sorry. You
mentioned the may Cerner as being one specific where the left iliac vein
is being compressed. Yes. I got that. Right. Yes. That always happens.
Yes. And, um, what are some other types? ācause thereās I think two or
three main ones that we talk about. So, so the next compression that
weāve really identified, and it is very, very underappreciated, is
something called nutcracker phenomenon. And you say, okay, well what is
that? Thereās two types of nutcrackers in medicine. One is with your
esophagus, um, which is very well known and understood. And the other
one is the way that the kidney vein and the mesenteric artery interact.
So if we go a little bit higher up in the abdomen, kind of by xiphoid,
well, uh, where your breast bone is. Yeah. Uh, you have, yeah, very high
up. You have two kidneys. So each of them need their own blood supply
from the artery. Well, the left kidney is easy, the aortas on the left,
so has a short little artery and it goes to the kidney. But coming back
from the left side, it has to go in front of the aorta, and then it has
to go into the IVC or the inferior vena cava, which is on the right
side. It just so happens that when going over the aorta, thereās another
artery just before the renals called the superior mesenteric artery. And
this artery feeds all of your intestines and it has a lot of weight on
it. And it can have several angles. So you have the aorta coming down
and you have this superior mesenteric artery coming off, and you have
the vein going right through the middle, and some people just donāt have
enough fat in the corner, or theyāve grown into it, or theyāve raised
it, or this angle is too tight. And that vein starts compressing and
creates a back pressure. Now this is, again described in the literature,
but weāve observed it to be very, very underappreciated for both its
prevalence, how often we see it, and the severity of symptoms that it
causes. And I think itās been because itās not sexy, and the repairs
that have been offered are extreme kidney transplants and big abdominal
incisions to disconnect the vein and resow it to another vein to help it
drain. And so in the setting of that type of extreme scenario, I could
see why doctors have been kinda like, well, letās not mess with it
unless youāre really, really sick. And so You talked about for the the
May Turner syndrome, it, the symptoms are really that thereās a
difference between the two legs. ācause the blood coming back from the
left leg is being impeded, and so the left leg is swelling, getting more
varicosities, maybe painful, uh, maybe thereās, I donāt know if thereās
more. And do they get pelvic congestion as well, or itās more the left
leg with that one? Yeah. So what weāve actually found is the two
syndromes are actually very intimately connected. Okay. Uh, we find that
most people who have one, have both more often than not. And
unfortunately I donāt have enough data to give you statistical numbers,
but what we find is that in both of these venous symptoms, symptoms,
the, uh, the veins donāt like having a lot of pressure in them. And so
you can imagine when youāre walking, your arteries are blurring the
blood to your feet, and now you have to return it. So now itās coming
back and on your right leg, itās going up great. And on your left, itās
not. And the human body has an amazing way of finding ways to get around
problems. So what you often see is that these symptoms are in women, and
you start to see, uh, secondary blood vessels, which we call
collaterals. Think of them like the side streets trying to get around a
clogged freeway. And so you build all these collaterals and a lot of
them go into the pelvis. And this is where we see a lot of the pelvic
congestion syndromes. Uh, we can see the si, uh, May 3rd syndrome or a,
a similar type of syndrome being exacerbated by pregnancy from a heavy
uterus being in the, in the pelvis, uh, tumors and masses. And once
youāve developed these collaterals, they usually donāt go away. And so
you start getting a lot of pelvic fullness and discomfort. Mm-hmm. Um,
and itāll often be very on and off. Youāll notice when youāre lying
flat, thereās no problems. When you raise your legs, thereās no
problems. But if you start performing exercise walking activity, uh, you
may notice your leg gets heavy discomfort, even more swollen, you can
actually measure. And some people on actual size difference between the
legs and some people just dunno how to describe it. So they just call it
a pain or a discomfort. So again, like other odd, I mean, weāre, weāre
gonna hopefully bring these together a little bit, but like other
autonomic dysfunction, itās worse when youāre upright. Yes, yes. And so
we think that, uh, the way these are all connected is that from the
groin to the ankle, the body very much relies on valves to keep the
blood in place and from the groin up to the heart, um, and what we call
the box, essentially your, your abdominal cavity, there are no valves.
So blood can go anywhere it wants to go if thereās a pathway. And so we
feel that, you know, these compression syndromes are impeding your
ability to return blood when youāre standing. So your heart is
essentially starved of blood. Itās like not enough gas in the gas line.
And when youāre standing, youāre also pooling it in the pelvis, which is
also not helping it go back. So youāre getting this double whammy. And
so what would be more of the symptoms of pelvic congestion? Like a lot
of women experience a sense of fullness. Maybe itās uterine, maybe itās
ovarian, maybe thereās fluid, maybe itās di like bowel digestive issues.
How would they, how would a person listening to this kind of clue in
like, huh, maybe I have pelvic congestion instead of maybe another label
that theyāve been considering? Sure. So again, youāre speaking to a guy
who has no idea Right. What it feels like to be a woman. But, you know,
having now interviewed hundreds of women, right? And having an intimate
knowledge of what the internal organs are like from both a, uh, open
surgical standpoint and a minimally invasive endovascular standpoint,
Iām able to guess or ask questions that might drive us. So what I like
to do is when, when we sit and we have an interview with a patient, um,
I like to basically take the body and treat it like a banana. So I say,
okay, letās peel away the layers and letās see if we can come up with a
diagnosis or a question Right. That leads us to proving it or disproving
it. Okay. So I just go back, back some basic things, right? So, you
know, is your pain related to your skin? Can you softly touch your skin?
Does it cause a problem? And Iāll literally go this slow, you know, no,
itās not a skin issue. The next thing is the fat and then the muscle.
You know, is it light pain and discomfort in the muscle? Can I pick,
pick a rectus muscle and, and reproduce the pain or not? So, you know,
barring out, they say no. And then now that gets us to the internals.
Now the, uh, often biggest complaint that women will complain of is, uh,
you say a, a heaviness and a fullness. So the first thing I ask is this
cycle related, or we have a lot of postmenopausal women. Do you remember
when you were having your menstrual periods, did it follow a pattern or
did you always have it? Do you have pain, uh, using feminine hygiene
products internally or being with a partner? Right. Many women who have
advanced, uh, pelvic congestion will have such painful intercourse,
which we call dyspareunia, that they wonāt have relations with their
partners. And it creates a whole nother dynamic in the family. Many
women have been complaining of this. Um, did we notice a pattern when
you were pregnant? You know, not everyone has been pregnant, but many
people have. And, uh, did it only happen during pregnancy? Did it get
worse during pregnancy? Uh, women who are multi Paris or those who have
had multiple children, theyāll often say, yeah, I was okay, maybe at my
first child, my second and I started having problems. And my third, it
got worse. Right. Okay. Um, have you had or even been considering a
hysterectomy or have you had heavy bleeding? Um, there are many causes
for heavy menstrual periods such as fibroids, tumors, cancer, but we
think that one of the bigger reasons may actually be this pelvic
congestion syndrome, because the body wasnāt meant to have a such high
venous pressure and it gets misrecognized and people end up having
hysterectomies in the absence of other explanations. Wow. Um, you know,
do your symptoms get better when you lie flat? Because when you lie
flat, lying flat is a great equalizer, uh, for pressure. Any pressure
you have is now equal with your heart. So theyāll say, oh yeah. Some
women will say they actually feel the blood rushing out of their pelvis.
And so what I encourage people to do who are like, is this something
thatās bothering me? Is you kind of just have to sit down and go through
my little banana peel away each layer and say, could this be my
intestines? Okay, I ate something really bad yesterday, and Oh yeah,
itās a grumbly stomach, or No, I always have this regardless of what I
eat or what I do. And and would it be the person who has it regardless
that is more likely to have this? Yes. Yes. Okay. In the absence of the
other, like, letās say dysautonomia patients Yeah. In your other women
who just have pelvic congestion syndrome, yeah. Theyāre gonna have that
fullness, discomfort, and achiness. Um, and again, some of them even had
hysterectomies and still havenāt had their symptoms go away. These are
the women who we usually find have pelvic congestion syndrome. And does
it affect bowel or bladder function? It can. So weāve identified, um,
you have to understand inside the pelvis, itās a very small space, maybe
no bigger than a fist. Um, and you have a uterus, you have, uh, a
rectum, you have a bladder. All these things are very in a tight area,
and you have all these varicose veins. And so we, weāve identified as
some of these varicose veins become irritating to these organs, and they
may cause a sense of like urinary urgency. Um, weāve had many women who
come in with a diagnosis of, uh, cystitis or chronic cystitis, and
theyāre, theyāve been, theyāre on antibiotics, theyāre doing all the
things, but theyāve never really had a positive biopsy that shows
bacteria. And, and yet they still have this, uh, sense of urgency. And
itās different than those who have the, uh, incontinence, the stress
incontinence, like after birth or mm-hmm. You know, women can get weak
pelvic floors. Um, many of these women have gone to pelvic floor
therapy, done the whole thing and have not quote unquote, gotten any
better. And thatās when you really start saying, I, I maybe weāre
missing something. Okay. And then the one thatās, um, sorry, I canāt
remember the name. The one thatās the, um, renal vein. The Nutcracker.
The Nutcracker. How does that present? So this one is a little bit more
tricky. So, uh, in the average walkie-talkie, you wouldnāt know they
have it at all unless you knew you had it. And then you could ask them
questions. We had a patient the other day, we were, uh, working up for
May earner. And, uh, weāve evolved our diagnostic protocol now to always
check for it. And there it was, the Nutcracker was there. She had no
symptoms, she had no pain until I asked her, do you occasionally get
flank pain? And sheās like, oh, oh yeah, I get it now and then, but I
just chalked it up to X, Y, and Z. So sheās asymptomatic. So what is the
nutcracker again? Itās the renal vein coming back across and then the
superior mesenteric artery smashing it against the aorta. 95% of the
population is built this way. Some people have what we call a retro
aortic, uh, renal vein. And so I wouldnāt say everybody ācause people
are very different, but everyoneās built this way. And what weāve
identified is patients who have these compressive syndromes typically
have a loss of fat. So the angle is much tighter. So the vein is higher
up in the angle and the angle is lower. So if you were to do an
ultrasound on them and actually do the geometry, youāll see that they
all have an angle less than 18 degrees. Uh, the GLP ones have unmasked
some people, as thereās been a big boom in weight loss, weāve identified
that the, uh, the fat pad that was once there is now gone and people who
are fine are getting worse. But again, what you have to understand is
you have one vein we havenāt talked about, and thatās the ovarian vein.
So, uh, our body is split into two sides. And so the left ovaries and
testicles are actually fed by a vein called the ovarian vein or gonadal
vein. And they, um, help to bring blood from the gonads up to the kidney
and into the heart. Well, a, a tube that goes one way can go another.
And so what weāve identified is patients actually have probably
compensated for their compression by having the valve. Thereās what we
call, I call it a century valve. Itās right where the gonadal vein and
the renal vein connect. And we see this valve going away, which allows
the blood flow to reverse down through the gonadal vein into the pelvis.
At which point many of these women would be fine, but most of āem have
made Thurner syndrome. So from the pelvis it tries to get back into the
iliac system and then hits a second compression. So what you have is the
left side of your body, or left kidney or left leg, is actually
sequestered, uh, in, in a, in a word to from your right side. So youāll
get left flank pain, left heaviness, um, you may notice left fullness.
And those are the patients who, what we call double compressors, they
have the most, uh, amount of, uh, symptoms and compression. How common
are these conditions? Like? I have to be honest, before I heard you
speak recently, I really had never heard of them. Granted, Iām a
psychiatrist, but you know, Iāve been working in this community for like
25 years. Yeah. So thatās why I was so excited that you were willing to
share what youāve learned, you know? Absolutely. Again, without the, um,
the research papers. Right? Yeah. Um, I would say just from my days in
academics doing a lot of arterial work, I may have done five, May 3rd
cases in nine years of practice. Okay. Right. We do five to 10 a week
now in the office. And so when you look at the normal population, these
are rare, you know, letās just say sub 7% of the population. But very
specifically in the dysautonomia patients weāve identified, I would
comfortably say greater than 95% of the patients have these compression
syndromes. Wow. Which leads to an entire nother conversation is how is
dysautonomia in the compressive syndromes related to one another?
Excellent. And So one would say, I donāt know, but the, the hypothesis
is, is, well, Iāll go back a little bit. Um, Iāll go back to how we
found it. Okay. And do our pathway. Yeah. So we start the practice, we
start seeing a ton of vein patients. Some of them have the may order, we
know it ācause itās in the literature. So of course we use our
ultrasounds. We look at it, we see the pattern and we treat these
patients and they come back and they say, thanks for treating my leg,
doctor. Thanks for doing my varicose veins. And oh, by the way, I happen
to have pop syndrome. I just didnāt really mention it ācause none of my
doctors ever listened to me and I didnāt wanna ruin my exam. You know
the story. If you have it, you know the story. And I got better. This
happened once. Oh, And the pots got better. Mm-hmm. When you treated the
merner. Yes, Yes. Oh. So this happened 3, 4, 7 times. And I said,
thereās gotta be something here. And so that was about the time that we
recognized we should start taking care and watching our data. So earlier
in 2025, we started really chugging the data from the practice. And
thatās when we came up with the initial hypothesis and presented it at
the Denomi conference of 2025. And what we identified was that, uh, we
use statistics in research to really validate what weāre doing. We found
a statistically significant result. And that patients who took a
validated test called the Malmo Pot score and who took the pelvic
congestion syndrome test all had improvement in their systems with a p
value of 0.001. Wow. We consider anything statistically significant
better than 0.05. So I mean, this is the best you can get. And so we
identified weāre not making their pots symptoms go away, although we do
have many people who say their symptoms are gone, this is not what we
lead with. We say that they have a statistically significant improvement
in the quality of their life. So Do you think it could be something to
do with connective tissue laxity? Like many people in our complex
chronic disease community have connective tissue, weāll just say
disorders of various types. And Iāve always thought, rightly or wrongly,
theyāre more likely to get autonomic dysfunction. ācause they just donāt
have the rigidity to be pushing the blood around effectively. And I
wonder if veins that are a little bit more floppy are more likely to get
squished. So, uh, I think that was a kind of my initial hypothesis. I
actually think in a few more years weāre gonna find that this is all
related to neurons and the brain and the peripheral nerves, which is why
I love the term disautonomia because it, uh, it doesnāt put anything in
one specific box, but I think it really classifies the whole group more
eloquently. Um, to the connective tissue point, uh, my initial
hypothesis was, oh, people have connective tissue disease, theyāre gonna
have worse disease. Thatās evolved a little bit. What weāve identified
is that we have many people who have both connective tissue disease and
donāt have connective tissue disease, but they have dysautonomia. Okay.
The ones with the connective tissue disease, though weāve identified
usually have worse varicose veins, as you stated, astutely, the, the,
the veins can stretch, but if they get beyond a certain point, which is
gonna be a lower threshold than the average person, they stay stretched.
So the varicose veins stay longer, the veins are bigger and more robust,
which leads to more potential space for capacitation of fluid, uh, and
worsening symptoms when you stand up. Um, and so the answer is yes and
no, uh, because the compression is there regardless. So can you just say
a little bit about the neural hypothesis thatās new to me? How, um,
sure. How is that connected? Sure. So, um, this initially kind of got
started with the observation of fibromyalgia. So in surgery, you know,
we, we make incisions on a lot of people. We do some major operations,
right. Not everything I do is minimally invasively. Yeah. So we have a
whole subset of fibromyalgia, and I recognize fibromyalgia. Patients are
unable to, um, like mentally tolerate even small movements blowing of
wind touch people lightly touching them. And to me itās a filter problem
of the brain because weāre being inundated with information all the
time. And itās the brainās job to kind of filter these things out. And
so, without me quoting papers, you know, my feeling as a surgeon is the
fibromyalgia patients, their brain is unable to filter out some of the
lower innocuous lesions or input. And so theyāre bothered or disturbed
by even low level things. And so big things really, really disturb them.
So if you take that and you say, okay, whatās happening on with these
dysautonomia people, we recognize that a lot of them have vagus nerve
symptoms. A lot of them are either rest or relax or fight or flight all
the time. Theyāre primed. And so the hypothesis is that once the vagus
nerve, which has two branches through the neck, where we see it all the
time for carotid surgery, itās about the size of a long weenie. And we
move it to the side, we do our carotid repairs, it continues into the
chest. Once it hits the stomach, it rotates 90 degrees. And then it kind
of like spiderwebs itself in the abdomen amongst all the organs. And so
its interaction on the celiac, we believe leads to the, uh, mouth, the
median arcuate ligament syndrome. In the nutcracker, you see a very
robust network around the nutcrackers because itās traveling through
into the intestines where itās gonna have a lot of influence. But,
pardon me. And so this is when we were talking with professionals like
Dr. Kinsella and Dr.Ā Lenny Winestock about the MCAS patients. Uh, this
is when we started putting all these theories together because if you
have a compression and you have these fibers and theyāre interacting and
theyāre being compressed, whatās to say? These fibers arenāt being, uh,
prematurely activated every time The heartbeats Wow. Leading to vagus
nerve stimulation, leading to a lot of the symptoms that people have.
Theyāre constantly trying to rest and relax, you know, distension,
bloating, and then their body has to get up and they have to be in a
sympathetic tone. ācause the bodyās all about balancing of tone. Yeah.
And they canāt do it because essentially they have a pressure point on
their vagus nerve. And then if you add the mayner, thereās a large
network of vein of, uh, nerves in this same location. And we know their
parasympathetic nerves because from doing our open aorta surgery, we
know the sympathetic plexus is actually on the other iliac artery on the
right. And itās a very defined, uh, nerve bundle. And in young men, we
have to avoid it. So they donāt have, uh, something called retrograde
e*********n. So if we take our surgery knowledge of, we know where these
nerve bundles are from doing open surgery, and then we kind of listen to
patient stories and we overlay a little bit of creativity, you can start
to see, oh, maybe this pattern is in fact the case. Because how many
people here are listening to this podcast and you say, Hey, listen.
Okay, do you have abdominal pain? Do you have bloating? Do you have
distension when we start? Do you know, do you get pelvic pain? Do you
get left leg fullness when you start talking to vast majority of women,
97% are women in our clinic. 80% of the stories have all the same core.
And then every person has their own, I would say individual flare, if
you will. You know, some get better with this and some donāt get better
with this. But for the most part, theyāre all the same. And a lot of
them are vagus nerve associated, and a lot of them are heart rate
associated. And, um, youāve mentioned a couple times and you thanks for
just giving those like, kind of alarming stats that itās 97% women. Why
do you think that is? I have no idea. Wow. So you, you do see occasional
male patients, but In our clinic, yeah. I mean, in our clinic weāve, um,
treated, uh, I think as of last week weāre close to 175 vein stents have
been placed. So weāve seen several hundred people. Thereās six
gentlemen, maybe five. Thatās it almost all the time. Wow. I mean, it
sounds like thereās a big hint there for someone who, uh, happens upon,
you know, what the might, what the reason might be. Yeah. And what are
some of the triggers? Like people arenāt coming to you at birth, theyāre
coming, like you said, a lot of people older, postmenopausal, um, do you
have a, and do they come with a trigger like, I was okay until this
happened, or I got lost COVID, or something Like that? Yeah, itās
interesting. So we, you know, in the dysautonomia community youāll see
several big triggers. Vaccines were one of them. COVID was one of them.
Uh, illness is one of them. Uh, traumatic brain injury has been one of
them, right. Uh, but in all of these, you see the common thread, itās
nerve related if you really listen right? Somehow the nervous system has
been involved. Um, for us, the triggers are, are various. I mean, um,
weāll get full families. Uh, Iāve got a grandmother who came in with the
mom and you know, the moms in their thirties or their forties and they
talk and theyāre like, oh, weāve had that and we do an ultrasound. And
they both have it. And then the mom says, oh, I need you to see my
daughter or my son. We had this the other day and they have it. And so
again, I think thereās some kind of familial inherited pattern. One
wants to go back to the connective tissue, say, is this part of it, um,
unsure or, or is it just random how youāre born? And it just happens
that way. It totally unsure at this point. But there is something that
is consistently occurring. And I think one day will get to the root of
it. Very fascinating. If someone suspects that they have, like, how do
people get to you? Because they must already have a suspicion. Yes.
Like, youāre coming, you know, youāre starting to get your name out
there as someone who understands these conditions. So yeah. How do
people kind of figure out that you might be someone who could help them?
It, this has probably been the hardest point right now because we
recognize that thereās a lot of pe If you take what weāve seen and you
extrapolate it, uh, Iāve heard numbers as high as, you know, thereās 40
or 60,000 people out in the United States who are suffering from
dysautonomia of one way or another. Right. Just huge numbers. Yeah. Um,
itās been very hard because, uh, thereās so much noise on social media.
Thereās all these, hereās I, I am not very facile with, with, uh,
Instagram. I have like seven posts. If you were to go to our Instagram
page, the STL Vascular Instagram page, um, youāll see an angiogram with
the, um, with the reflux and everything. But weāve been trying to be
more grassroots. Um, also, you donāt see me jumping on the roof banging,
uh, a bell saying, come to us because, um, we believe in the practice.
We wanna be very tempered and metered because we have this data. And I
will been, Iām always trying to disprove that Iām wrong, right. Because
we, we have a responsibility as doctors and surgeons not to go down the
wrong pathway. And so weāre letting the data and the results drive us.
And weāre have a big grassroot and word of mouth campaign. Um, people
are finding us on the internet, um, maybe through a podcast like this.
Mm-hmm. But itās getting to the point where Iām becoming more and more
confident that weāre doing something thatās special. And, you know, we
would like to find a way to connect with more patients because the, the
stories, the life improvement stories are just phenomenal. So maybe walk
us through what ev um, evaluation you do if, if people do get to you,
and then if you find one of these syndromes how you manage it. Yeah,
absolutely. Uh, before we go that, Iāll add one more symptom we havenāt
talked about, which is headaches. Thereās a lot of people out there who
say they have very bad headaches. Um, theyāve had blood patches or
spinal patches or spinal headaches. Theyāre neurologist. And I wanna put
that out there ācause thereās someone whoās like, oh, Iāve got all this,
but I also have headaches. And the headaches are from the Nutcracker
phenomenon. Uh, the, the angiogram on the, uh, Instagram page shows a
really good example of how the, the spine drains. So how, how do we go
about stuff in the clinic? Uh, well before it used to be, Hey, I have
some varicose veins and my left leg hurts. Now literally coming with us
and saying like, Hey, Iāve seen five, seven doctors, uh, my
cardiologist, thereās nothing wrong with me. Or I have pots or, or I
almost have pots. Not quite, uh, my neurologist, you know, says thereās
nothing wrong with me. My EE Gās good. My EMG is good. My nerve
conduction studyās good. Right? Uh, weāll get people from, you know, Dr.
Weinstock, ācause heās in town in St.Ā Louis with us. And heāll, theyāll
say, I have MCA, the mast cell activation syndrome, which is a whole
little thing we can spin off in a minute. Um, theyāll say, I have these
crushing headaches that wonāt go away. Or they only go away when I, you
know, lie flat. Um, I have the connective tissue disease. They come in
already having seen everybody and exhausted everything. And theyāre on
an oral regimen usually of like salt, uh, rest, you know, some people
are on disability. Yeah. And now the, the, the, uh, the workupās pretty
streamlined. So basically weāll sit and weāll have an interview talk
really quickly, and I really try to rule out what itās not. Right. Iāll
go through the whole banana analogy of, okay, youāre having pelvic
symptoms, you know, is it this, this, and this? Some people have had,
you know, low grade abdominal discomfort, eh, I feel less likely. Right?
But you ask āem, you know, leg pain, leg discomfort, varicose pains. Now
Iāve had people who are in the medical field even say, I have groin pain
and itāll be on the right. So I donāt let the side drive it. Theyāll say
they have low pelvic symptoms. Right. Uh, miscarriages, heady bleeding,
painful intercourse, history of hysterectomy, um, just a fullness
achiness in the pelvis. These are all to me warning signs. Right.
Urinary urgency. Um, as, as Iām moving up, you know, to the nutcracker
bloating, left flank pain in the extremes, urine, uh, blood that may be
microscopic but might come up on a, on a test and thereās no
explanation, no infection. Right. Uh, and headaches. So if you fall into
this and youāre giving me the story, you say, okay, you might have it.
So what do we do next? Well, uh, thereās kind of this principle in the
surgery world go least invasive to most invasive, most medical doctors
will practice this. Uh, because again, you have to remember everything
you do has a risk. So letās not take a needed risk. So I have an
excellent team of, uh, ultrasound technicians in the office, and we have
the, the best equipment you can get. Uh, someone probably got something
better. So Iāll say the next best equipment in the office. But if you
walked into our office, youād be like, wow, this is really good
technology. And weāve come up with a protocol for screening. Uh, we came
up with our protocol and found out that another society for ultrasound
had actually made a similar screening. And so we independently came up
with it. So we know itās a good protocol and we use a simple ultrasound,
which most women arenāt familiar with. And we look at the flow pattern
at the groin and at the belly button of the veins on the left and on the
right. And then we try to look at the, the nutcracker. Sometimes
peopleās body, um, shape wonāt let us or they ate or thereās gas. But we
try to do a screening test with an ultrasound. And whatās interesting,
since we do a lot of varicose veins, if you took all of our vein
patients and you screen them, five to 7% have these compressive
syndromes. Wow. So weāre, I didnāt know what they just saw. They had
varicose veins. Yeah, They do. So 95% of the time you have, you just
have varicose veins and weāll do that. But in the pots or dysautonomia
patients, 97% of the time itās there every single time. Like so, so much
to the point that the techs do everything without me and theyāre like,
theyāve got it before Iāve even seen them sometimes, you know, we value
patientsā time. We really try to make sure our office appointments are
efficient and we try to spend as much time with patients and weāll flip
the order sometimes and theyāll go ahead and screen them based on their
little screening questions. And there it is. So now we have a good
story. We have a non-invasive test. And so whatās the next thing that
you do? Right? Yeah. Well, If you are a 13-year-old girl, which we had
the other day, we donāt go any further. But do you know what we just
told that 13-year-old girl and her mother, we think we have a good
explanation why you feel this way. Letās see you in six months. Letās
see you in a year. Letās keep you going. Letās keep you motivated and
youāre not crazy. Right? Right. So validation is huge. Huge. ācause
weāve, weāve named the thing thatās been causing them discomfort. And we
might do the same thing for a 16-year-old. We might do the same thing
for an 18-year-old where we pivot is quality of life. I have some young
women who are looking to fail out of school. Right. Theyāre not doing
well in college. Uh, theyāre not doing well in their job, theyāre on
disability. To me, in the risk benefit category, the best thing you
could do would be to get them back on track for life. I mean, just think
about the long-term consequences of someone not being able to go to
college and just how their whole life path changes or theyāre in a
relationship and the relationshipās rocky because theyāre sick all the
time and you could correct that train. Right. Or they want to have
children and they canāt because the syndrome is preventing them from
doing it. So in the young population, we try to be very cognizant of
what weāre doing because these stents canāt come out and why weāre doing
it. But before we go there we go another step. So before we treat it,
the next thing is what we do is a diagnostic venogram. So we talk to
you, we do the ultrasound, and then we schedule a diagnostic venogram.
Meaning you come to our office, you lie on the operating room table, we
give you some relaxation medicine, you can still talk and breathe. And
we put two little IVs in your veins in the groin, and we take pictures
with IV dye. Right. And then we take them, you Can totally see it like
Iāve seen some of your images. Itās just, Yeah. Yeah. Like, and like I
said, on the Instagram, you can see a venogram of a patient and then we
use an intravascular or inside the blood vessel ultrasound machine. So
not only do we take a picture with the contrast, we actually measure it
through calipers. And I think that that right there was the critical
evolution in our workup. Because when I used to just interpret the
venograms so many times I said, you donāt have it because we actually
didnāt know what we were looking at because the bodyās compensated. So
well put the v put the ultrasound in, and there it is like 90% of the
time. And sometimes we can even reproduce the symptoms on the table that
the patientās been having to basically confirm that these are the things
that have been then bothering them. And when you say the, the intra, um,
like the intravessel, um, ultrasound, what youāre looking for
constriction? Correct. So Youāre okay. Yeah. So we can see the diameter
of the vein and youāll see it just boop, go down to nothing and then
come back and youāll see where the artery is on top beating it. Oh yeah.
Yeah. Where you see on the nutcracker where the compression is and you
can see the little angle, all these things that Iām showing you or
things that we see, uh, and we see the same pattern over and over and
over again. So now, yeah, rather than just guessing what you have, I can
put a little tiny tube in, take a picture, and I can see your renal vein
refluxing, we can see the blood flow around your spine thatās probably
causing your headaches. We, we can see the pelvic filling with blood
vessels. We can see the compression, like we can really prove it. And
thatās been the big change for me is now that we have real data, real
scientific data, do you treat it? And then the patients that we treat,
they get better. And so maybe talk about the treatment. You said itās a
stent, so Sure. Thatās like kind of a rigid tube that you put into
support the vein so that it doesnāt get squished. Sure. So the, again,
the hypo, I mean, youāre a surgeon, you only have so many tools. So what
are you gonna do? Youāre, youāre not gonna remove the vein. If you
balloon the vein, which is a very temporary fix, you can set up an
inflammation pathway, but all the balloon is gonna do is spring it out
and itās gonna spring right back so that by the time youāre done with
that case, youāre back. So the balloon isnāt gonna do anything. So the
standard treatment from a third has been a stent. And again, usually May
3rd was treated, uh, for like DVT in the leg because the compression was
so bad. But we realized that it can help open up that compression, drain
the pelvis, get that blood flowing better, get that leg flowing better,
give your body access to the blood for the patients with dysautonomia,
right? Because thereās a lot of blood down there. And then thereās a
whole sequence. Sometimes we put the stent in and we will do pelvic
coils and embolizations at the same setting where weāll put little tiny
look, think of āem like springs or chemicals to get rid of those
varicose veins. Uh, sometimes weāll do that at another date, but thatās
how we treat the pelvis. And then again, trying to always do as little
as possible. Sometimes thatās all a patient needs and youāll say, well,
why does it work? And this is where the researchers, I donāt know why it
works. Mm-hmm. Um, I I, there must be something about the nerve plexus
again on the vein and on the artery, but by opening that space, a lot of
patients say that their pot symptoms improve. So is the artery
compressing a plexus near the vein? Is the artery just giving it space,
allowing it to beat without any interaction? Uh, thatās an area of of
research and I think it would take some really eloquent studies with
like vagus nerve to figure it out. But it works. And the worst patients
have the worst pain. It can be quite uncomfortable with a low pregnancy
labor type pain because thatās the nerves that are getting irritated
between two and two weeks. Some other lessons weāve learned is Iām sure
people out there have either been stented or talking to get stented by
other specialties. Uh, weāve learned that not to oversize these stents.
Uh, please donāt do that. Thatās where a lot of the pain Thinker isnāt
always better. Itās not. But thatās whatās taught in the academics. And
we really trying to flip the script. Thereās this big concern about
movement of the stent or migration, right? Remember being deployed in a
compressed scenario, so it isnāt going anywhere. Uh, weāve also
identified how we have to doing it. Weāre doing these stents differently
than most centers. We have a large academic center in town. They do a
very traditional way. We bring ours all the way up into the inferior
cava, which really lifts the aorta off the blood vessels, treats both
the right and the left leg. And the data there is so compelling. Itās
being presented at hopefully in 2026. Iāve just submitted the data for
the paper of like 146 patients for this with no complications. And can
you talk about the stents? I know you wanted to talk a little bit about
MCAS and this might, I donāt know if this is a segue, but thereās
worries that the stents may not be compatible or they may trigger mast
cell activation symptoms. Sure. Well, I think for the mast cell
component, you have to understand is it a chicken or an egg argument?
And I make the argument that mast cell is an egg, meaning you had a
chicken first. And so we believe that the patients with mast cell from
repeated bouts of inflammation and hypotension, their bodies essentially
are freaking out. Itās like you got shot in the pelvis and then they
stopped it and you got shot again. You know, being surgeons, weāve seen
this and this is how your body reacts. And it gets to the point where it
starts just releasing a whole bunch of, um, chemicals. Now we also know
that the collagen is different in some of these connective tissue
patients. So we donāt know, am I right? And itās just they have a lower
threshold or is there another pathway? But a lot of the hypersensitivity
patients seem to be the result of prolonged, right? Most people donāt
get pots and then ma MCA immediately. Thereās usually a long drawn up or
so weāve, uh, spoken to several dermatologists. Weāve asked them the
metals that are used, um, in these stents is something called nitinol.
Itās nickel titanium. It was invented by the navy many, many years ago.
Itās in almost all medical products. And even if you have a nickel
allergy, the functional component is so small that you really have no
reaction. Also, a lot of immunologists and allergists will tell you that
intravascular reaction is different than skin dermal reaction because
the, uh, intravascular system doesnāt have the same level of like
histamine, uh, sensitive cells like the skin does, where the skin is
trying to protect you. So we are unaware of anybody having allergic
reaction, uh, From so out of the, you said a hundred and something, uh,
or a stints that youāve put in. And nobodyās had some weird in
inflammatory response, not been response. Yeah, Iām sure they tell you.
Oh, oh, theyāll tell you. Right? Yeah. This is a very vocal and self
advocating group, uh, up for the Nutcracker. Uh, we believe that the
Nutcracker, um, should be treated a little bit differently. So we use
one stent by a specific vendor. Uh, I wonāt promote vendors, but we use
the stent for a very specific reason. It has an open cell, it has a high
force, what we call radio force. And it lets us do the treatment in a
segmented fashion and deploy it. Unlike previous generation of stent up
in the Nutcracker, we treat it with an entirely different stent thatās
very big. Itās a different type of, uh, approach and it helps treat the
reflux and go na and open up that angle. And, uh, weāve noticed a lot of
people with the GI symptoms improve after that. And that one I really
feel that, um, has to do with the vagus nerve component. Thereās a huge
plexus there and a lot of the patients improve. So we have many people
who are double compressors. We treat them with the may earner first, the
Nutcracker second, and all of them have said that they have, have
improvement of their symptoms. And this is all minimally invasive, like
youāre going in through the vein, you donāt have, you donāt end up with
a big scar. Correct. So even in people who have connective tissue
disorders, right, uh, who are pro scarring, youāre talking about an
incision no wider than the width of a nail, uh, just as wide as a little
knife to stab in. And itās all done with x-ray, minimally invasively.
And what are some of the side effects of putting a stent in? The biggest
one, the biggest risks, you know, we have to talk about are, are you
gonna have any long-term benefit? So, you know, unlike, um, amputating a
leg where we know you have no leg when weāre done, I donāt know if
youāre gonna get better from this. And Iām very clear about this. I
think everybody is individual and thereās not enough data, but we put
that out immediately. But we hope that weāre doing it for the right
reason and this is why we go through all these steps. Uh, another
concern would be clotting of a vein. Uh, depending on how you place the
stent, do you have any underlying conditions you could clot these stents
off our Mayer stent, we have basically no incidence of thrombosis.
Thereās one patient thatās some scar tissue, but it didnāt clot, put her
on some prophylactic or just in case medicine as a blood thinner for a
month. And in the renal we have had no reported clotting of anything,
although itās a risk, uh, migration or movement. Uh, these are going
into compressed scenarios, so the migration risks should be very, very
little to none. Okay. And then long-term patency. Right. These are inert
metals, so they should have a long-term shelf life. Uh, the Nutcracker
is a covered stent that we use, uh, but itās an inert material that the
covering is placed with. And so the only potential long-term risk would
be maybe some inflammation in the vein itself Now. And so could these
stents stay in, like say you have a 20-year-old, I guess we probably
donāt have enough data to know for how long might this stent be
effective or, you know, is it like it Be for life? Thatās how Iāve
planned for it. Yeah. Okay. Now, even though these stents arenāt placed
in this location, and thereās a lot of papers, there are arterial stents
which have been placed and manufactured by these companies that use the
exact same principles. Thereās some engineering differences in them, but
itās the same metal and itās the same cat fabric. Theyāve been in
patients for decades. Okay. And so one could extrapolate, well, if it
was good enough for an artery, it should be good enough for a vein. Um,
these are not new and exotic type materials. These are materials that
have been tried and trued for decades. I mean, thereās patients who I
trained on, you know, 20 years ago we were using this technology, so we
know itās taking power. Yeah. Yeah. Thatās reassuring that itās not
fancy and new. Itās been, it stood the test of time. Yes, absolutely. To
the best of our research ability. What about non-surgical interventions?
Say it is a 13-year-old, someone whoās planning, I donāt know, for some
reason, canāt access maybe financial reasons, even the surgery. Are
there strategies that people could use to kind of help them manage
Whatās going on? Yeah. I think the first and foremost is, uh, fear. So
when you have something and you donāt know what it is and it makes you a
terrible, it probably makes it worse. Right? So our ability to, even if
you never saw me and you listened to this podcast and you said, Hey,
this checkās nine out of my 10 life boxes, right. Letās just pretend I
have it. And I, I canāt afford to go see Dr.Ā Hacker or Yeah. Or, or Iām
gonna take this podcast to my doctor, but theyāre unwilling to do the
test, right. So Iām gonna pretend I have it. I think just knowing that,
you know, this has clearly been around for millions of years, right?
This is not a new thing. Weāre just now being able to treat it so we
know people have had it. People continue to have it, and youāll get
through life. Right. Youāre Going to be, itās not a fatal progressive
condition. Youāll have discomfort. Yeah. But you can live your life.
Yes. And, and you know, one of the bigger strategies Iāve been trying to
work with is, you know, the, there are monks who, who train in the
Himalayas to, to, to endure pain, right. You see the little parlor
tricks on the, so one then has to ask herself, okay, really then this
higher level of pain is uncomfortable, but is it a permanent state? And
now that I know what my problem is, or I know, I think my problem is
mm-hmm. And I know Iām not gonna die from it, can I start training my
brain to ignore it? And I think thatās where cognitive behavioral
therapy and other strategies may have a role in the populations that
donāt wanna seek surgical intervention, canāt seek surgical
intervention, are nervous about intervention. Right. Yeah. Um, that,
Thatās really interesting. ācause itās actually one of the things Iāve
trained in and offer, you know, through my online, uh, business, is
teaching people neuroplasticity based strategies to basically turn down
the sensitivity of the brain so that even if they have an ongoing
biomedical situation, sending nociceptive signals up to the brain, itās
still possible to turn that down so youāre not living in so much misery.
Yeah. There are proven scientific methods. Yeah. If you can recognize
what the problem is and you can name the problem, you can
physiologically or through your own bodyās activity, start reducing the
volume of these things. Mm-hmm. I think a lot of the fear cycle is
people, thereās a lot of anxiety in this patient population. ācause
thereās a lot of unknown. Yeah. Maybe other home factors, uh, things
that I canāt really put my finger on that people are struggling with or
suffering with, both financially, socially. Right. But if you can give
this kind of a name, I say name your monster and you can see it, you can
suddenly control it and you can take your life back and you can know
that thereās a future and you no longer have to be a slave to it, which
is what we try to tell people. Our treatment doesnāt get rid of it, or I
it does for some people. Mm-hmm. And I donāt know if thatās a placebo
effect or not, but those who say theyāre getting better, theyāre getting
better and they know that theyāve done everything that they can, and you
see them improved, like visit after visit. ācause weāve been watching
people closely and I think thereās something very powerful in, uh, being
able to take control of your own life and responsibility for it. Yeah.
Thatās really, thatās fascinating. I didnāt expect our interview to go
in that direction. Um, maybe just a couple questions before we wind
down. So, are there people like physios who can help, I donāt know,
recommend lifestyle strategies or massage or, I donāt know, Iām thinking
of like massage to get the fluid out of the lower body. Are there
strategies like that? Well, remember the fluid is, itās not like
lymphedema where you have this fluid kind of stuck in the layer of fat
and you canāt get it up. This is your venous blood and itās just got a
narrow valve so you can get it back by raising your legs. You could auto
trans. Okay. If youāre getting a headache just lying down and raising
your leg, auto transfuses about a liter of blood into you immediately.
Wow. Um, so if youāre like, oh, I donāt feel great, just lying down and
doing that. The other thing is, I think not going down the cycle of, um,
anxiety, youāll see this too. Anxiety begets anxiety, begets anxiety,
knowing that you have strategies to reduce these things. Um, some of the
pelvic pain and discomfort is cyclical. You can have it one day and not
another. Uh, I have a patient who is just in the er again for an
exacerbation. Um, being able to just recognize, oh, this is my thing and
Iām going to, um, Iām listening to my body, but Iām not freaking out.
Yeah. Not getting that cycle of going to the er. Um, I think, uh, people
who are trained in biofeedback, physi, you know, therapists and whatnot,
uh, training patients to, uh, again, work on biofeedback, uh, could be
huge to resetting some of these cycles. Okay. How can people get the
kind of ultrasound that, like, is an average ultrasound able to give the
information to help people understand if they have one of these
compression syndromes? Or does the ultrasound tech and the person
interpreting it have to have some special training? Uh, I would go with
the latter. Okay. And the reason is this, even though these syndromes
are described, um, you really have to have a tech who knows what theyāre
looking for. Any ultrasound tech can take the probe and do the study.
But what I realized was as we were going on this little journey, the
techs werenāt spending enough time or they werenāt, um, um, like in the
right location because itās not built into the standard protocols. Most
of what, and the way hospitals function, theyāre very protocol based to
ensure a good quality, uh, and, and to their own fault. Thereās not a
lot of room for creativity. And this falls into an area where youād
really have to prep somebody and say, listen, we are specifically
looking for X, Y, and Z, and because weāre looking for X, Y, and Z, we
need to look at X, Y, and Z and add It to the protocol. Yeah. Not that
it couldnāt be done, but I think it would take education. So my goal is
hopefully we can get enough data that we can develop a really good
protocol for this, and then try to at least share it with other centers
whoād be interested around the country. That sounds great. Um, I think
thatās it. Iām just kind of looking at my last questions here. Oh. How
do you, how do people get to you? Um, do you take people from out of
state, out of country, say someoneās just like, this is what I have.
Yeah. I just wanna cut to the chase and go see. Sure. Yeah. So, so weāre
easy to find. So thereās only one private vascular surgery group in the
city of St. Louis in the United States, in the state of Missouri. Right.
Wow. So, uh, I also have a terrible last name for a surgeon. Itās
hacker. So if you were to go online in Google, Dr. Robert Hacker, uh,
St. Louis, Missouri, youāll find the St. Louis vascular surgical
specialist. Thatās, thatās our specialty. Uh, you can email us
information, you can, um, call the office to set up appointments. Um,
weāve been trying to, thereās a lot of rules about treating patients
over state with telehealth and what license you have. So we have to be
very cognizant of these things. Um, thereās many people who will just
help guide them if they wanna stay local, but if they wanted to come
into town, we have very affordable fees. Unlike the big hospital
systems, we, we are completely, um, open to all kinds of, um, of
pathways of meeting people and financing things where a large, larger
hospital systems are unable to do such. So, and what, like, Iām in
Canada, as you may know, so what about taking people from out of
country? Yeah. So the, the out of country, of course, a Canadian can
come to the US right? I donāt even know how I practice medicine in
Canada. But, um, one of the things we try to do as an added is instead
of someone getting on a plane or driving all the hours down to see us,
we would try to maybe have a, um, a non-diagnostic medical phone call
maybe for 30 minutes, or, you know, where we could do some pre-screening
questions, uh, to see whether or not this is something that we should
follow or should go down so that weāre not wasting time. Um, or, or
patientās money or resources. Right. Yeah. Um, but itās been my
observation that many of the patients with the dysautonomia, they know
what theyāve got. They know how long theyāve got it. They have all the
other studies that say what they donāt have. Right. Right. Usually
theyāre coming to our clinic or approaching us pretty well prepared for,
uh, for a discussion. And, uh, Maybe a, a final question. What do you
want people to take away from this? Say just the average listener.
Whatās your message? You know, what Iāve learned the biggest lesson,
this, I didnāt realize how many people, mostly women are suffering and,
uh, what a gap in medical education, medical knowledge, diagnostic
knowledge, all of this. And so I would be, I think Iād wanna end on a
very positive note that, you know, youāre not crazy. You, you shouldnāt
be dismissed. Um, there are many causes that doctors are thinking about
for many reasons, but a lot of them, and the way that many doctors
think, Iām sure even Canada, ācause theyāre similar training platforms.
Mm-hmm. Theyāre very algorithmic. And if they didnāt make it into a
chapter or they, they arenāt a, a, a thing of interest, youāre being
dismissed. Right. And, and so the doctors are using a lot of the tools
to the best of their ability. Right. GI guys are using endoscopies and
biopsies, but these are coming up negative. The neurologists are doing
their tests that we talked about and theyāre coming up negative. You
know, hereās one more thread that you could pull that you could explore.
And weāve been finding that usually this is the thread that needed to
get pulled and needed to get explored. And itās, weāve been able to tie
it all into one big unifying theory. And so I would say donāt give up,
donāt get tired, donāt get frustrated. Just know you havenāt found the
right doctor yet. And, uh, may maybe itās us or maybe we can help you
find that person. Thank you so much. This has been very illuminating.
Iāve learned a ton and Iām pretty sure you know, the listeners will have
as well. Thank you so much. I appreciate the honor and the pleasure to
talk with everybody. Okay. Bye-bye. Thanks for joining me on the Dr.
Eleanor Stein podcast. I hope you are taking away new strategies and
ideas to improve your health and your renewed sense of hope. Join me,
Dr.Ā Eleanor Stein for our next episode. Canāt wait. Check out my website
for a wealth of free resources.
