Pelvic Congestion Syndrome and POTS with Dr. Steven Smith

Episode 101: Pelvic Congestion Syndrome with Dr. Smith [00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTS Cast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast. [00:00:29] Jill (Host): Hello, fellow POTS patients and splendid people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are going to discuss a fascinating potential connection to POTS in a subset of patients, one that our guest might refer to as a 'plumbing problem.' This will certainly not be relevant to everyone or even most patients, but for any POTS patients with certain types of pelvic pain, then this might be intriguing as an episode for you. We are speaking to Dr. Steven Smith, who recently retired after a long career as an interventional radiologist in Chicago, Illinois. He spent his career doing some very high-tech novel treatments for certain types of pelvic pain, among other things. And in doing this work, he and his colleagues noticed a pattern regarding POTS patients. Along with his colleague at the Mayo Clinic, Scottsdale and others, Dr. Smith has published their findings and will discuss them today. He was also featured in a documentary on Amazon Prime called Without a Scalpel, where you can see his work. And I gotta say, when I watched it, my jaw dropped because I could not believe the things that interventional radiologists can do these days. So, I'm excited for us to talk about them. Dr. Smith, thank you so much for being here today. [00:01:57] Dr. Steven Smith (Guest): Happy to be here. So, I hope everybody has mercy on me and just remembers that, uh, I'm a plumber who got invited to the electricians. [00:02:05] Jill (Host): [Laughs] Well, yeah, for starters, what is an interventional radiologist? Because I feel like I have seen a lot of physicians and I have never heard of that type of physician until I met you. [00:02:19] Dr. Steven Smith (Guest): Yeah, that's a good question. Interventional radiologists are doctors who fix things, not doctors who read x-rays. The radiologist part comes in because we use imaging guidance, ultrasound, x-rays, CT scans to guide little micro tools through the body to where the disease is and then try and cure it or moderate it without cutting the patient open usually. So, the first interventional radiologist was a guy named Dr. Charles daughter - D-O-T-T-E-R. Everybody should Google that guy. And he invented angioplasty, which everybody's heard of. Uh, you connect angioplasty with cardiologists, but we do angioplasty all over the body, in the brain, everywhere. His basic idea of turning a little tube that was to squirt x-ray die in a blood vessel, turning it into a tool was his big idea. So now interventional radiologists use things like that to inject little radioactive beads into cancers, guide needles into kidney cancers, for example, and inject liquid argon into the needle and freeze the cancer and kill it. In 1998, I did the first uterine fibroid embolization in Illinois, and that kills and shrinks up uterine fibroids so patients don't need to have a hysterectomy. And I could go on and on. But, the basic idea of all this was invented by and practiced by interventional radiologists whom you've never heard of. [00:03:56] Jill (Host): Well, that's amazing because I know it's all old hat to you, but I just wanna emphasize what you said there. I think you said you can guide micro tools around the body to solve problems, right? [00:04:09] Dr. Steven Smith (Guest): Yeah. [00:04:10] Jill (Host): And so that involves things like cameras or needles or stents. [00:04:16] Dr. Steven Smith (Guest): Not cameras. Usually not cameras. These are much smaller than a laparoscopic camera, okay? Much smaller. Those things are like, I dunno, giant sewer pipes compared to what we're using. I'm talking about little tubes that are the diameter of the lead in a lead pencil, okay? Very very small. Numb the skin slip one of these things into an artery or vein or blocked bile duct or whatever. And you can sort of follow the byways of the body into the place where the disease is. And what do you do when you get there? Well, you can inject dye and take a picture of it, or you could inject stuff to kill a tumor, or you could do all kinds of things. You can suck out clots that are about to kill the patient from their lungs, which I used to do just about every day, and all kinds of other stuff. So that's why I say it's like being a plumber. [00:05:18] Jill (Host): A very, very high-tech plumber. [00:05:21] Dr. Steven Smith (Guest): Interesting stuff, I think. [00:05:22] Jill (Host): Yeah, mind blowing. So, you have become kind of famous for helping women with a certain type of chronic pelvic pain. Can you talk about? [00:05:34] Dr. Steven Smith (Guest): Yes, I can. Thanks. So, uh, back in the 1980s, I was, uh, treating a lot of men with something called varicocele, which is a bunch of varicose veins on your testicle. And I was sort of, uh, in with people who invented the idea, or early adopters of the idea, of trying to cut off blood flow to these veins and shrink them. There's a condition in women called pelvic congestion syndrome called by many other names, we'll use that one. And that is very similar. It's varicose veins around the ovaries around them, vagina and uterus. The problem is that it's easy to see if a man has big varicose vein stains around his, uh, testicles, but you can't see, uh, the ovaries in women. They're hidden away. So this has led to a real problem with gynecologists. The way gynecologists look at your pelvis, they often can't see these veins. So, women got classified as being crazy or whatever. The problem is, um, if you've got pain and you keep complaining of pain and they do a laparoscopy or they look up your vagina or they do whatever, they may just say that you're crazy or something like that. And in fact, they evolved this word, myofascial pain, which means, gee, your pelvis is tender inside when we push on things. So you have myofascial pain. If you think of it, myofascial pain is a terrible, terrible term. That would be like calling polio ""weakness. In other words, polio is caused by something - the poliovirus. Weakness is maybe a, a symptom of polio. Myofascial pain is like an intellectually lazy thing to call pelvic pain, and there's something called bladder pain syndrome. That's another intellectually lazy thing. Your bladder hurts. Why does your bladder? It just tells you that the people that call it that have hit a brick wall and really don't know what to do, and they're just stumped. So, turns out that veins can cause aching pain in your pelvis, in your bladder. And everybody, uh, has seen somebody with like big bulging varicose veins on their leg and some of those people, if they told you that their leg hurt or was aching all the time, you would sort of cluck sympathetically and you would understand it. But what if the veins are hidden inside the pelvis in a woman. Then she's crazy or something, you know? I mean, but now we know how to see the veins. We can correlate it with very specific type of pelvic pain complaint. Very different than endometriosis or other things. So we can help women, but women are sort of in the control of doctors who don't understand this, and that's the big problem. [00:08:45] Jill (Host): Yeah, and I think that's why you got famous was for listening to your patients and looking for the real plumbing problem, and then even being able to fix it in many cases. And we'll get to that in a minute. I'm wondering if we can just define a couple terms that I think are gonna come up. So, you already mentioned pelvic congestion syndrome, but can you say what is the congestion that we're talking about? [00:09:12] Dr. Steven Smith (Guest): Yes. An artery delivers blood to, let's say the pelvis, and then nourishes the tissues by going through the capillaries and then it comes back through veins, okay? That's how waste products are removed from tissues. That's how oxygen is delivered to tissue. That's what keeps your tissues happy. What if there's a blockage in the vein end? So, high pressure arteries are supposed to come in and drop off stuff that then washes out into low pressure veins. What if the pressure in the veins goes up to a very high level? Nourishment of the tissues is bad. It almost stops. And so, then the tissues, they have ischemia and they actually have not enough blood flow, but people think of a blocked artery as cutting off your blood flow, cutting off the delivery, but this is like a traffic jam of the whole system if the veins are blocked. And that produces pain. And there are other ways that pain are produced, like literally these distended veins can apparently leach out something called substance P, and that causes pain. But this can all be occult, that is to say, unseen by the gynecologist, the pain physicians, or whatever. [00:10:32] Jill (Host): And so my understanding is it can really get very painful, right? And maybe more painful when upright, very painful for some women during sex, more painful after a couple pregnancies and really, really horribly painful in some cases, right? [00:10:51] Dr. Steven Smith (Guest): Oh yeah. A lot of pain during sex is very common. And, uh, we see a lot of the women who are divorced or getting divorced because they're having a healthy sexual relationship within your marriage is important and if you can't have it, things start to go wrong. And so, I've actually stopped divorces. [Laughs] But yeah, and the other thing is if you're in the hands of doctors who don't understand it, then you feel like you're crazy, you know, patients feel like they're going crazy. Just like dysautonomia patients. [00:11:26] Jill (Host): [Laughs] Right. I was gonna say, our audience can probably relate. Okay, so you became an expert in this pelvic congestion syndrome, and I think if people start Googling it, they might find a couple related words, such as pelvic venous insufficiency or venous outflow obstruction. And those are just other terms that mean your blood is kind of getting stuck in these unhealthy veins and it can't flow properly. Is that kind of right? [00:11:57] Dr. Steven Smith (Guest): Yeah, I guess so. I would say this: different specialists are sort of coming into the picture and trying to define it in different ways, but in a way it's complicated, but in a way it's very straightforward. Here's the important thing about this, okay. There are different patterns of pelvic pain. If you have endometriosis, you have terrible periods or adenomyosis, a lot of bleeding and periods and cramping. If you have an infection, you'll have a fever or discharge. With this, here is the most important thing for somebody, if you're asking yourself could I have this, my pelvic pain due to this? You could have sex pain, but here's the deal, when you wake up in the morning, the patient usually doesn't have pain. When they get up and start moving around, they start to get pelvic pain, usually it's a aching pain. It might be on the left or the right, usually the left or central. They can get pain in the vagina and can say, it feels like a bowling ball is trying to come out my vagina. Terrible. And then just imagine your doctor doesn't know what that means. So it's orthostatic, you know, it's an orthostatic pain, just like orthostatic intolerance and all that stuff. Everybody in the POTS world knows that word orthostatic, but that absolutely is the type of pain in pelvic congestion. [00:13:21] Jill (Host): So I think the big question in everybody's mind now is, okay, we kind of understand this idea of pelvic congestion syndrome, but why are we talking about that in relationship to POTS? What were you seeing in your patients that made you get interested in POTS? [00:13:43] Dr. Steven Smith (Guest): Sure. I'll say that I discovered some of this stuff on my own, and there's another doctor in Dallas named Dr. Danny Chan, C-H-A-N, and he discovered it on his own and probably some other people did. So Danny Chan discovered it in 2012. I didn't know what he was doing, and then I figured it out maybe around 2015 or 2016. And when I asked him how did you figure out that POTS and these pelvic veins are linked? He goes, "I just kinda of backed into it." Here's the interesting, Danny Chan and I were both in private practice. We weren't in some and clinics and saw our own patients, both of us. So what that means is we both noticed something that didn't make sense. Like, patients would come back and say, yeah, my pelvic pain is better and I can have sex now, but my chest pain is gone or my anxiety is gone. And I had a patient, geez, in 2015 I think, who said, "my pelvic pain is gone, my sex pains gone, but my interstitial cystitis is gone." Interstitial cystitis is this mysterious disease of unknown cause that, you know, messes up your bladder. It's, it's not a bladder infection. It's not due to germs, it's a specific condition of unknown cause. Urologists are in charge, they have no idea what causes it. So she said she had gone to the University of Chicago for 12 years and had 20 bladder inflations with steroid solution because they think it's an inflammation. And boom, it's gone. And I said, "listen, uh, you know, I didn't even know you had that." And she said, "oh yeah, well I didn't tell you 'cause I, I don't wanna tell people all the things that are wrong with me because then they'll think I'm crazy." And that's a, that's a thought to hold on to. Turned that also had a pain syndrome and that ended up going away. She had a tilt table thing and she had some kind of POTS. So what I did is I, I had three days. Luckily I'm divorced, so I had nothing to do but read articles, I read about articles about that are related to those two conditions, and all of a sudden I figured it out. I figured it out. Lack of blood flow going north from below the waist is very, very common in dysautonomia, don't how it happens, and they're milling theories. But I thought, what if it's because your pelvic veins are just creating a big stagnant pool of blood that can't go north of the waist because of a blocked vein, because of stretched out veins. I still didn't know what was making those veins abnormal. Then I tried to do three things to see if pelvic veins were linked up with POTS or chronic fatigue syndrome. I did three things. Number one, I made a big, huge questionnaire about all those things and more that we gave to every patient when they came in, every pelvic congestion patient, and then three months and six months and a year later. [00:16:57] Jill (Host): And I think you mean symptom surveys, right? Because you figured out that patients were not telling you all of their symptoms because they didn't wanna sound crazy, so you decided to make a survey that would ask about everything, right? [00:17:11] Dr. Steven Smith (Guest): Well, because they weren't telling us. So the survey, this big survey was a clinical tool. It wasn't a really a research project at that point. It was just, Hey, I realized that these patients were so miserable, but it wasn't just from pelvic pain. One of my patients is the administrator for the pelvic congestion syndrome Facebook group, which has 7,000 members, and I said, "Look, do your PCS sufferers complain of like terrible fatigue or heart flutters or you know, migraines, bunch of other stuff?" "Oh, yeah." So I made another questionnaire and she sort of midwife the deal to get it in front of some of these patients. And, uh, so we ended up with 400 responses. The results of that just were published in, uh, Phlebology. And so that that asks the question, do pelvic congestion patients who are drawn together in a support group just for pelvic congestion syndrome and who have been diagnosed by a doctor do they have all this other stuff - do they have Ehlers Danlos Syndrome? Do they have a lot of stuff? [00:18:23] Jill (Host): Can I just tell something funny? [00:18:25] Dr. Steven Smith (Guest): Oh yeah. [00:18:26] Jill (Host): So I of course, have been researching some of this in preparation, and I have gone into that Facebook group and it's amazing how many of those patients are dysautonomia and Ehlers-Danlos patients. I felt like I was just in a POTS group, and it was nuts. It was about pelvic congestion syndrome. But the other funny thing, obviously I've been looking at lots of data and papers about this, but the thing that the photo that spoke a thousand words was, I believe a row of patients in your waiting room, all of whom could put a leg behind their neck. [00:19:09] Dr. Steven Smith (Guest): Oh, I was in a group and, you know, my clinic day, it would be like, uh, the bar scene in Star Wars. You know, I had all these different patients than the rest of my partners, and one of my partners said, "are you running an Ehlers-Danlos clinic?" Because in other words, is that a business plan for financial success doctor going into some rare disease instead of just taking care of? It was funny. It was like, like, what are you doing, Steve? [Laughs] [00:19:39] Jill (Host): yeah. So it definitely, I mean, I realize it's not data, but it's definitely noticeable that there's a lot of dysautonomia and Ehlers Danlos patients in your crowd. [00:19:53] Dr. Steven Smith (Guest): Here's the deal, the difference between science and just telling people's stories is writing it down, so, so that's what I'm trying to do, by the way. [00:20:01] Jill (Host): Yeah. You had mentioned the paper that recently came out. And can you tell us a little bit more about what... [00:20:09] Dr. Steven Smith (Guest): One of 'em was the Facebook paper, but the other one, and this is the third thing that I'm was launched into, was an imaging review. So, the Facebook thing is just asking people with PCS about every other symptom you can think of, and then there's asking our own patients with PCS about those things. But then, uh, along with Dr. Grace Knuttinen and at the Mayo Clinic, Scottsdale Interventional Radiology Department, we ended up with few hundred patients who had the diagnosis of POTS, and we got permission from the IRB to do an imaging review on all those patients. In other words, we wanted to see if they'd had CT scans at pelvis and see if we could see an increased incidence of abnormal pelvic veins in patients who been diagnosed with POTS syndrome. So that's looking at it from the other way, from POTS toward veins, instead of looking at it from veins toward other stuff. And we ended up with a control group of, you know, like normal kidney donors at the Mayo Clinic. I don't work at the Mayo Clinic, by the way. I'm just a kibitzer there. So we had that and it, and it turned out that 70% of the patients who had the POTS diagnosis had mostly narrowed iliac veins. In other words, the outflow of blood from below the waist is pinched and cut off, and we only are inferentially thinking that that actually is causing a shortage of blood flow to the upper body. I think it may be, gee whiz. But that is the part of the pathophysiological mechanism that's already known about POTS or, you know, a lot of this other stuff, dysautonomia, whatever. So gee, maybe we're on something. And then, you know, I talked to Danny Chan who is, you know, brilliant guy and so, oh, he and I went to the site of interventional radiology meeting and we were showing cases and talking to people, and people were just freaking out. It was very interesting, but change is bad sometimes. In other words, you say something like this and, and it upsets people. But I am trying to take this a step further. Maybe we'll talk about that later. [00:22:37] Jill (Host): Yeah, I'd like to just kind of emphasize what you said there because I think it's so fascinating that you looked at CT scans of POTS patients versus healthy controls who are kidney donors, and you found that the POTS patients had significantly higher rates of having, I think you called it 'venous outflow obstruction', which is basically narrowed veins coming outta the lower body, meaning that blood is just having a more difficult time going up north. Is that correct? [00:23:13] Dr. Steven Smith (Guest): Right. You got it. And so what is causing the vein to be pinched? There is something called May-Thurner syndrome. May and Thurner were vascular surgeons, and they found that sometimes people would clot up their pelvic and leg veins on the left due to a blockage of the left common iliac vein. So, where the blockage occurred was invariably where an artery, a big artery, laid over the vein and pressed, uh, the vein against the spine. But they also described that there was scar tissue that formed around the vein and inside the vein. So it wasn't just pressed upon because that same anatomy is in everybody, but not everybody gets this. Well, what causes the scar tissue? What causes the vein to be so fragile that it scars down? I think the answer is gonna be Ehlers Danlos syndrome or abnormal collagen that makes the veins too fragile. But the other thing that we've found is that the pelvic veins can stretch out, you know, veins are a thin wall. Once the vein stretches out enough, then, uh, something called the law of laplace takes over, which means that there's more tension created on the wall of the vein at the same pressure, the bigger the space is that the vein is taking up. And so, you end up with people who stand up and, and these huge veins fill up and they just have stagnant blood flow. You can inject x-ray dye in and come back 20 minutes later and it's still sitting in these huge veins around the ovaries and the vagina. It's very impressive. Well, that's not supposed to happen. That blood is supposed to keep moving. And I'm talking it just sits there when they're lying down. Think what happens when they stand up. These things blow up like birthday balloons. And so if all that's hidden from doctors, female patients are screwed, they're in trouble. [00:25:14] Jill (Host): So that is absolutely fascinating and we know in POTS that they already have excessive blood pooling in the abdominal area, so it sounds like this would just maybe make it possible for so much more blood pooling to happen. [00:25:30] Dr. Steven Smith (Guest): Yeah. Dr. Stewart, who's done all this great work of what happens to blood volume, they think like 800 ccs of blood sags down into your, if you're a woman, into your butt and pelvis and more into your legs, momentarily, but then things sort of get mobilized out. What if your veins and your skin and your legs, it's all stretchy, so now it's like a big stretchy water bag, but also the added problem of having a May-Thurner type blockage. Now you stand up. Well, no wonder they're telling you to wear compression stockings and try to tank you up with salt water all the time just to boost your fill level up to your brain or heart. So maybe there's another factor, at least in some patients that could be fixed. The big deal about this is that, give me two hours, I can fix these veins, okay? Like the US Army Corps of Engineers, you know, drain the swamp and channel the river straight, and then what? Maybe you can help people, right? [00:26:38] Jill (Host): Well let's talk about that, and I guess I just wanted to emphasize also I believe in that 2020 paper that you wrote with Dr. Knuttinen and and colleagues, I think that there was some mention that potentially this blood flow, not being able to get out of the lower body, might contribute to POTS. I think that anecdotally you guys have said that POTS patients report feeling better in terms of their POTS symptoms after your treatments. So, let's talk about what your treatments are and I just again, wanna remind people that they can actually see this. Your documentary is the third episode of Without a Scalpel on Amazon Prime, if they wanna actually see this in action cause it's, it's kind of amazing. Can you explain what you do for people with pelvic congestion syndrome? [00:27:37] Dr. Steven Smith (Guest): Sure. And also, let me emphasize if you go and watch that, yeah, there's no mention of dysautonomia or anything in there. We made it in 2016 and it's just about pelvic congestion syndrome. You'll get to see us doing a case and what we do and how we think about it. You'll get to see these veins and what's wrong with them. I just wanna say that all my enthusiasm and everything is coming from a different place. It's coming from the fact that we, I've got a lot of data on this now that I'm writing up on 45 patients, like 700,000 data points. This is important for everybody out there who has POTS syndrome or whatever to remember, and that is that I am dealing with a population of patients who have abnormal, messed up pelvic veins, okay? And so any data that we collect on and publish or whatever is about what happens to patients with abnormal pelvic veins. The one study was looking at POTS patients and seeing if they have the veins, but it would be wrong to infer that every POTS patient should beat a path to get their veins fixed because we don't know that yet. And to find that out, we need to do a different kind of a study that takes a lot of money. We actually have a protocol for that type of study. That would be a level two scientific data study. We don't have anything like that now. I'm just talking about observational stuff, so please, everybody, I don't say that I had the panacea or the philosopher stone for, for POTS syndrome, okay? [00:29:19] Jill (Host): That's a great idea, and we should even maybe mention that even though the 70% of POTS patients that had some evidence of potential messed up veins, it sounds like such a high number, but in the control group it was still 40%, right? So there are a lot of people who have some element of what looks like kind of some vein issues and it doesn't always necessarily mean that is the root cause of your POTS or whatever problems you're having and that fixing it would improve it. So I I thank you for bringing that up 'cause we do need to be clear 'cause it is easy to get enthusiastic, partially because just the, the sheer technology of what you can do and your treatments is so mind blowing. But I appreciate your reminding us all that you have a lens through which you have been seeing POTS and it's um, not everybody for sure. [00:30:15] Dr. Steven Smith (Guest): Here's my big picture view of this. Imagine these patients who've got pelvic pain, sex pain, headaches, severe fatigue, and all this stuff, but they go to different specialists and they're very wary about people saying they're crazy, but also the specialists view everything through their own lens. One thing about interventional radiology is we're in every organ in the body. [00:30:45] Jill (Host): Okay. So from your view, and for this particular group of patients that you deal with, what is your approach to trying to help somebody with pelvic congestion syndrome? [00:31:00] Dr. Steven Smith (Guest): Well, they have to have the clinical picture and then usually we would get this very sophisticated type of movie like blood flow MRI, where you can just trace the blood flow and you can see what the problem is and veins might be compressed, veins might be dilated and flowing backwards. Easy peasy to fix all that, you know, just block the blood going down into the varicose vein, open the veins that allows blood to get outta the pelvis. And sometimes you have to do other things. Sometimes you have to fix varicose veins in the legs, too, you know, patient usually lies on the table, and sometimes we just give them heavy IV sedation, sometimes we give anesthesia, but the, they're not gonna have an incision. We just numb the skin and put a little tube in there and we can see it, we can guide it around, we can inject x-ray diet and see if we're in the right place. And so we can be very sure what's going on. Once the tip of the catheter is in, say, a dilated ovarian vein we can inject a sclerosing agent which is like a liquid that goes in the varicose veins, and it just stays there. We block it with a little tiny coil and it just sits there. You'll never see that vein again. Blood is detoured into normal veins, and for the blocked veins we put in a stent. It's sort of like one of those Chinese finger things that where you can't get your finger out. It's kinda a woven tube, but it goes in very small and then pops open and then you slam it open with angioplasty balloon and that's it. It's gonna stay there. And then people have better blood flow. So one of the things that is amazing is that when patients come back at like three months and yousee them,you realize that they look different. Their face turns from kinda gray to more rosy looking because they actually are getting more flow to their whole upper body. In fact, I just talked to a patient yesterday who we did in 2018. She was driving her kids to school, got chest pain every day. She had horrible pelvic pain. She went to a pain physician, they put her on gabapentin for the pain and the cardiologist said, 'there's nothing wrong with your heart." So they put her on heavy Xanax, but she was this young Polish mother in Chicago, cleaning lady, and, and man, her life was falling apart and she was losing her mind. I can't remember how she got to me, but she had one of these things. We put stents in. We embolized some of her veins. Boom! Immediately her pain went away and her anxiety went away and took her off Xanax and her pelvic pain went away and they took her off gabapentin, which is the most POS, general shotgun type medicine, you know, and so is Xanax. So her pain doctors and her gynecologist and her cardiologist didn't know what was wrong with her and they put her on this just sort of shotgun medicine stuff to shut her up. Meanwhile, she still got drive her kids school and still gotta clean the houses. So, Let's find out what's causing stuff. [00:34:14] Jill (Host): Yeah. So it's funny because I know that you've done this procedure a thousand times, so it's nothing to you, but I'm still kind of caught up on how magical it all sounds, because basically you're saying that you can make a little incision, insert catheters into people's blood vessels. You can kill off the blood vessels that are not working because maybe they're dilated or stretched or varicose. And then for the ones that are pinched off, you can insert a stent that will hold open the blood flow if it's getting like pinched between say like the spine and a high pressure artery. [00:34:55] Dr. Steven Smith (Guest): Yeah. [00:34:56] Jill (Host): And you're saying you can just in a couple hours, go in there, do all that plumbing, get out, and sometimes the patient was not even asleep? [00:35:06] Dr. Steven Smith (Guest): Yeah, not me personally. I'm retired now, so I just whittle on the front porch. [00:35:12] Jill (Host): [Laughs] So can I ask some questions about this procedure, because to me it really does sound like magic. Like, how long does it take? What does it feel like? What is the recovery like? What are the risks? Does it always work? What's can go wrong? [00:35:27] Dr. Steven Smith (Guest): Sure. Yeah, can go wrong. Something can always go wrong. We know a lot about pelvic vein embolization because of the study done by Dr. Tony Van Brooks at George Washington and the effect on fertility. There's no adverse effect on fertility. The amount of radiation involved is small, in the grand scheme of things. It's pretty safe. The stents are made out either OL or or steel. The coils are these little things with background fibers that are thrombogenic because you want the vein to clot up. So when I said US Army Corp of Enginneers, that's what I mean. We're channeling the river straight, but all the flooded areas, we're drying those up by doing the embolization of sclerosant. And we can do that and get away with it because veins are very redundant. So if we get rid of the bad veins, it's no problem. Blood just goes into normal veins. Who I put stents in 20 years come back into the clinic and they're fine. Patients end up having to take a at least a babyaspirin a day, just if they have stents. We don't put 'em on full anticoagulation, 'cause that's its own problem. So patients are sore afterwards for a while. And when we used to use these real strong steel stents, they had a lot more stent pain like for weeks or, or months, and then it would go away. Now they used different kinds of stents that are grippy and stay in the right place. They're not overly expansile. They're not that rough on the neighborhood, I guess. They're pretty safe. We've used them for many years for everywhere in the body. I mean, I've used them in the kidneys, even the intestinal blood supply, all kinds of stuff. [00:37:24] Jill (Host): So I always have been thinking that Ehlers-Danlos syndrome patients have these weak, floppy veins, but they can stand up to having a catheter being put in them? [00:37:36] Dr. Steven Smith (Guest): Well, we've always known, you know, that Ehlers Danlos and the vascular type causes arterial aneurysms and all kinds of other crazy stuff and intestinal perforations. But, you know, I suppose most of these patients have the other hypermobile type or maybe classical type, but what I didn't really know is how that affected veins. But now that I did this review, I see that people have figured out this vein stuff and the relationship to fibrotic or collagen disease a long time ago. Yes, absolutely. In our study, our statistician, anthropologist person, told me that the patients who have Ehlers Danlos syndrome and the patients that don't both get equal improvement, clinical improvement. So, that gives me hope. We don't know everything, but I'll tell you this, in the Facebook group of pelvic congestion patients, 6% said, of the 400 that responded, said that they had been formally diagnosed with Ehlers Danlos Syndrome. Wow. We've always wondered what the heck is wrong with these veins that they're scarred down or, or dilated up like balloons. What's wrong with them? There has to be an intrinsic problem with the veins because other women don't have this. But nobody ever looked for Ehlers Danlos. Nobody ever did that. So I don't know if I'm the first, or maybe there's somebody else, but the point is, It's clear to me that Ehlers-Danlos syndrome affects veins and it messes up veins and it may mess up blood return, not just by the lower body kind of swelling up because it's too stretchy, the skin and the veins, but maybe it's the actual pipeline system is messed up. Do you see? [00:39:39] Jill (Host): Yeah. [00:39:40] Dr. Steven Smith (Guest): If patients get better, I know I'm not fixing Ehlers-Danlos syndrome. No, that's a genetic or a hereditary condition. So, the exciting thing to me is this- what if pelvic veins, at least in some patients, could be a pathophysiological length within Ehlers-Danlos syndrome affecting dysautonomia. Do you see? Because you can't fix Ehlers Danlos syndrome. I mean, I can't. But what if you could improve the blood flow deficit, the stagnation of blood below the waist by a two hour, uh, procedure done by some mysterious doctors you never heard of? [00:40:22] Jill (Host): Right, right. So I assume that when you started doing all of this stuff, you had never heard of POTS. You had never heard of Ehlers-Danlos syndrome. I'm guessing you had never heard of mast cell activation syndrome. Does that factor anywhere into what you're seeing? Because I'm guessing that anytime you have a lot of patients with Ehlers-Danlos syndrome and POTS, you're gonna have some mast cell patients in there too. [00:40:49] Dr. Steven Smith (Guest): Oh yeah. [00:40:49] Jill (Host): Did you have people blowing up on you where you know the contrast dye all the sudden they're in anaphylaxis or, I don't know, my mind as a person with severe MCAS is I'm always worried about giving my body surprises. And so did you have people on your table where you were like, oh my gosh, what's happening? And it turned out that it was mast cell reactions, or have you not seen a lot of that? [00:41:16] Dr. Steven Smith (Guest): All right, so first of all, I went to medical school, so I did remember what POTS syndrome was and Ehlers Danlos syndrome, that's on your interventional radiology boards because it causes vascular problems, but especially the vascular type. So, it is a vascular disease. But MCAS man, I never heard of that. Although a bunch of people in, uh, in my waiting room had crazy rashes and all kinds of problems and had been diagnosed with MCAS. And so, you know, I read up about that. And so, we tried to track that in the questionnaires. Multiple chemical sensitivities. So, here's the thing. So imagine that for 30 years of my career, I'm given this stuff to like many patients a day, every day, many tens of thousands of patients. How often have I seen somebody just die on the table from anaphalaxis? Answer is maybe, maybe four or five out of hundreds of thousands, okay? And many, many, many more got, you know, CT scans while I was on duty. So that's extremely rare. So, even if you have a population of people who are especially reactive to all this stuff, just blasting everybody with the stuff produces very, very little death. The commonest reaction is a mast cell type or carry reaction, which may produce wheezing or other things from arm infusion veins, or some other type of vein infusion. Why? Because the stuff irritates mast cells along the upper arm veins is the theory. If you give people arterial contrast, almost nobody has one of these reactions, but every once in a while they do. It's irritating reaction to cause mast cells being released. What do you do for those patients? If patients have a history of hives, urticaria, or multiple reactions, like strawberries, chocolate, seafood, whatever, give them a steroid prep the night before to try to stabilize and again that day, and then maybe we give them some kind of antihistamines, and you go ahead and do it and patients sail right through who have had previous reactions. If somebody has had a previous life threatening reaction like anaphylactic shock, cardiac arrest, or something like that and lived through it, we don't give them any of that stuff, which is, we don't try and do it, okay? Other than that, that reaction is unpredictable and also we know what to do about it. Like, if I had a outpatient center and I had a patient like this, I might do them in the hospital lab, you know, the hospital interventional radiology room, just because I would have more backup. We understand it. We understand that part of histamine reaction world. [00:44:17] Jill (Host): And do your colleagues, I mean, first of all, it's just such a treat to even be talking to a specialist in a different area that understands what mast cell activation syndrome is. Do you think that your colleagues that you've published with, are they also aware of mass cell activation syndrome in general because they have worked with this population? [00:44:40] Dr. Steven Smith (Guest): Absolutely we are. You know, again, I'm a stranger in a strange land here. I'm a, I'm a plumber that's wandered into the world of immunology and histamine and all this stuff, but it doesn't mean I know everything. I, I'm learning stuff every day while I'm whittling, you know, on the front porch. [00:45:01] Jill (Host): [Laughs] Well, I admire you always are looking to learn the next thing, and I know that you are very passionate about wanting to help advance the science regarding this approach and that you and your colleagues have thought very carefully about the research study that you would like to do. [00:45:23] Dr. Steven Smith (Guest): Yeah. [00:45:23] Jill (Host): And would need a lot of funding, but could potentially do a lot of good for this population. Do you wanna share what that is? [00:45:32] Dr. Steven Smith (Guest): Yeah. Along with a couple of colleagues. Uh, we got a grant for $200,000. And so there's a multi-center, uh, prospective sort of duplication of the questionnaire thing that I'm doing with my patients at bunch of different centers, uh, Oklahoma City, Denver, Scottsdale, Chicago. So that is going forward. That was $200,000, because it's just, you know, giving people questionnaires. But in the world of medical science, that's like a joke. So, what you really need to do is you need to do a prospective trial. You need to take people who have abnormal pelvic veins and maybe pelvic pain plus dysautonomia. You gotta divide 'em into two groups, get them to agree. One group has to agree to delay treatment, and then you have to treat one group. But before, you have to do this: you have to do complete, uh, dysautonomia testing. You have to do limited neuropsych testing for brain fog, you know, and memory issues. [00:46:40] Jill (Host): Because you think those things might improve with this procedure? [00:46:44] Dr. Steven Smith (Guest): Patients who have pelvic congestion syndrome and who have brain fog, brain fog, I'll just say, seems to be abolished and I've got the data, but I can't say more. But I'll say this. So we wanna do that and then we wanna do urodynamics, okay? I'll also say that at the Mayo Clinic, we're are gonna do a study about men who have analogous condition of interstitial cystitis, which is, called non-bacterial prostitis, and that may get better when you fix their veins. So a lot of this stuff is gonna be going down and Dr. Grace Knuttinen is the queen of this, but to do the big study that I talk about, we've got the protocol. It could be run out of Mayo and hopefully we'd get some other centers who would be excited about this. This is going to take a lot of money. [00:47:39] Jill (Host): Right. Well, we would invite people to contact us here at StandingUptoPOTS.Org if this is something that is of interest to. And we can put people in touch because yes, we are all about more research helping POTS patients, especially things that can help this generation of POTS patients, things that don't need another 30 years of basic science until they can be practical and useful. [00:48:05] Dr. Steven Smith (Guest): Yeah, I mean, I've, I've talked to people in the dysautonomia world who just freaked out as if I was some sort of bomb throwing wild-eyed nut. But, nobody should be afraid of an idea. We should help patients and we should investigate ideas. We should see if we're on the right track or not. If not, let's discard this and move on to the next thing. [00:48:30] Jill (Host): I love that. I wish more people had that attitude. Is there anything else that we should say about POTS and pelvic congestion syndrome? [00:48:40] Dr. Steven Smith (Guest): There are a lot of different pathological agents or mechanisms that can be at work in patients with dysautonomia. Look at COVID,look at Epstein Barr, look at all these different things. Look at small fiber, neuropathy and and immune factors. I'm just the plumber and I don't know if any happy results that I've seen are gonna be able to explain any of this other stuff, and I don't claim that. I'm just gonna plot ahead doing my little plumbing ideas and see what's up. See if it helps people. [00:49:23] Jill (Host): Well, wonderful. We appreciate it that you're doing good work and listening to patients, and when you see a pattern, you are raising your hand and saying, "Hey, I think I might see something here. How about some research?" I think that is all we could hope for. Well, I'm so glad we're getting the word out. If there is an angel, uh, donor out there who would like to see this research done, you can contact us at [email protected]. And Dr. Smith, thank you so much for your time today and for your ongoing work to find solutions for people who were often previously told that there was no hope. I know you spend a lot of time working to help people with this even though you are now retired and could probably be spending your time playing golf or something. So we are incredibly grateful. Thank you for being here today. [00:50:15] Dr. Steven Smith (Guest): Yeah, I'm buying one of those metal detectors for the beach because I might find it. Thanks for having me. Thanks, Miss Brook, and good luck to everybody suffering with POTS. [00:50:26] Jill (Host): Okay, listeners, we hope you enjoy today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon. [00:50:39] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2022 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to [email protected]]