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.