The Diagnosis Hiding In Your Pelvis with Dr. Alexis Cutchins (Ep 167)

Transcripts are auto-generated and may contain errors

Dr. Alexis Cutchins: [00:00:00] If you have severe left renal vein compression, and I'm talking severe because a lot of patients have some left renal renal vein compression along with this, um, then that needs to be a conversation with a kidney transplant specialist, someone who works with nutcracker patients and the interventional radiologist does seen as disease treatment to see kind of what the timing of all of that would be.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein, a Mayo Clinic trained expert in Ehlers-Danlos Syndrome dedicated to helping you navigate joint hypermobility and live your best life. I am so excited to speak with Dr. Alexis Cutchins. Today we are going to be talking about pots, dysautonomia, and pelvic venous [00:01:00] disease.

This is such an important conversation because POTS is something that we see quite commonly in people who have EDS and HSD, and oftentimes treatment of these conditions can be quite challenging. So taking a deep dive into pelvic venous disease and what symptoms we should be looking for, what tests we should order, and what kind of outcomes we might expect from interventions, I think is going to be a really important conversation.

Dr. Cuttin is a board certified cardiologist and global leader in the care of complex chronic illnesses, including pots mast cell activation syndrome, dys, adenoma, and long COVID. I. After 13 years on faculty at Emory University, she founded Cutchins Cardiovascular Medicine in New York City, where she brings her expertise and passion for patients with underdiagnosed conditions recognized internationally for both her clinical care and her groundbreaking research linking pelvic venous disease to orthostatic intolerance.

Dr. Cuttin also serves on the boards of [00:02:00] I-S-M-C-A-S standing up to pots and sapphire. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.

I am so excited to chat with you. Um, Dr. Cussens, thank you so much for joining me today on Vedi Bodies. Thanks for having me. I'm super excited to be here. Oh, great. Great. So today we're gonna talk about pots, postural orthostatic tachycardia syndrome, and dysautonomia in general. But we're really gonna focus on venous disease because I know that that is an area of SU subspecialty for you.

Right? And it's something that I think a lot of people are not very aware of. So can you explain briefly for an overview, the connection between pelvic veins and pots, how you would explain that to a patient? 

Dr. Alexis Cutchins: Yeah. So, um, we all know that POTS results from sort of a venous pooling in the lower half of the [00:03:00] body.

And so you get dilation of blood vessels in the, um, abdomen, the pelvis, and the lower extremities. And, you know, for a long time that was always thought to be an autonomic dysfunction mediated process where there was, you know, an abnormality that caused those to dilate in an abnormal way, which I think is very real.

And there, um, but. Over the course of taking patient care of patients with pots, I was noticing that they all had symptoms of sort of leg pain, pelvic pain, um, and other things that were not quite connecting all the dots for me. Um, and I will say that the first patient I looked for venous disease in was a 24-year-old woman who was quite, um, well compensated except, you know, she could only eat more foods and she, you know, didn't wanna take any medicines.

Because they all gave her psychiatric side effects, but her compression socks stopped working one day. So he looked for venous insufficiency and she had bad lower extremity venous insufficiency, and we fixed it. [00:04:00] And I called her up because she hadn't come in for a follow up and she said, oh, I don't need to come back.

I'm totally fine. I don't have pots anymore. And that's when I started thinking, Hmm, you know, maybe there's something to this. And maybe it's not just the autonomic dysfunction, but there's something else going on in these veins that's causing. Extra pooling. Um, and so over time I started looking for this in patients and it became clear that, you know, there was that connection.

Uh, and then I started learning about pelvic venous disease, and then I started asking questions about that and looking for that. And sure enough, it's there too. So when you have pelvic venous disease and you have obstruction of blood flow in the veins of the pelvis, there's less blood returning to the heart.

There's more blood pooling in the pelvis, in the lower extremities. And when less blood returns to the heart, less blood pumps outta the heart. When you have less blood pumping outta the heart, you have less blood go into your brain. And so ultimately that results in chronic fatigue and brain fog and pop symptoms or high heart rate when you stand, you know, lack of, uh, adequate [00:05:00] compensation with position change and exercise, et cetera.

Dr. Linda Bluestein: And can the venous disease be either within the pelvis or in the lower extremities? Yeah, usually there's both. Okay. And what three signs would you say are most specific for, uh, you suspecting pelvic venous disease in somebody labeled with POTS 

Dr. Alexis Cutchins: as a cardiologist? Patients come to me because they feel like they have pots or they've been diagnosed with pots.

Okay. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Alexis Cutchins: Um, so I ask them questions like, do you have pain in your pelvis? All of them do. Um, does it get worse? The most important thing is, does it get worse over time? If you're sitting for a prolonged, prolonged period of time or standing for a prolonged period of time. And if it does, that means that there's worsening pain with pooling, right?

Mm-hmm. Um, so that's one ma major red flag. The other major red flag is low back pain. In the same circumstances, both of these should resolve lying flat when the blood redistributes. Um, another symptom that I see that's pretty, um, pretty classic [00:06:00] is leg discomfort. So you don't have to necessarily have swelling, but any kind of tingling or, um, parasthesias pain.

Ness is one. You know the, that's kind of a red flag to me that there's some Venus pulling going on in the in the lower extremities as well. 

Dr. Linda Bluestein: That's great. And what about listeners who are thinking, gosh, I, I think I might have some orthostatic intolerance. I don't know if it meets the criteria for pots or not.

Are there things that they can do at home to gauge their orthostatic intolerance, like a five to 10 minute, um, active stand test? And if they do that, what numbers? Should make them bring this up to their doctor. And I guess the last part of that would be, um, how do you suggest they bring this up to their doctor?

Because we know that that's a big part of the problem, such a, a 

Dr. Alexis Cutchins: hard thing to do in this day and age. Unfortunately, yes. So I recommend the Nasaline, which is a 10 minute, um, sort of passive standing test. Uh, what I tell patients to do is live flat for five minutes and then take your [00:07:00] blood pressure, record that blood pressure twice, record the heart rate twice.

And then stand up about six inches away from the wall with your top of your shoulders leaning up against the wall, and stay there for 10 minutes. And during those 10 minutes, um, record your blood pressure and your heart rate about every minute. And at the end of the 10 minutes, you know, you can stop the test.

But what we're looking for, for with pots is, um, basically stable blood pressure. Maybe it'll, it'll move a little bit, but it shouldn't drop substantially. And, um, a heart rate rise that's greater than 30 beats per minute in adults and greater than 40 beats per minute in, um, anyone under the age of 18. So if that happens and is sustained, it doesn't have to happen right away.

It could happen at minute three or five. Um, then, you know, that's what's gonna give us a diagnosis of pots. And I use that as my criteria for diagnosis. I don't recommend a til table test because I find them very, um. You know, just really, they really disrupt [00:08:00] function in my patients. My patients have a lot of flares and symptoms after tilt table tests, so I try to avoid those.

Um, when you have that information in hand, what I would do is repeat it another couple of times so you have data to bring into your doctor. And then, you know, I would approach a primary care physician and say, look, I have these symptoms. I feel really dizzy when I stand. I don't think it's normal.

Sometimes I even pass out or I feel like I'm about to pass out or my vision goes, you know, gray and I did this test, um, that I heard about from a cardiologist, you know, on a podcast. And it looks like I meet the criteria for pots. Um, I think more and more people are understanding what pops is and are learning what that that word is.

Uh, and so it's not as uncommon for primary care physicians or even, you know, other practitioners. Recognize that that might actually be a thing for a patient. Um, so that's what I would recommend doing. Having a couple data [00:09:00] points separated by time and you know, just bringing them to the doctor and explaining your symptoms.

Dr. Linda Bluestein: Yeah, de definitely, and I do orthostatic vital signs in my office because I, I used to send people for tilt table testing and then, you know, they'd have to wait months and months and months and, and obviously doing orthostatic vital signs in my office is super easy to do. And another important part of the criteria is they need to have symptoms that go along with that.

Right. So like the heat and tolerance? Yeah. And you know, like you said, the orthostatic intolerance getting dizzy when you stand up, the black shades closing in and that kind thing. Um, but I also wanna make sure to point out, because some people might be listening to this and say, oh, that happens to me every so often.

This needs to be something that's happening to you on a regular basis for at least three months. Is that correct? That's part of the criteria, right? Yeah. 

Dr. Alexis Cutchins: Yes. And it needs, yeah, it needs to be a chronic symptom, right? Right. Now it can come and go. You can have days where it doesn't happen. You can have days where it does happen, but as long as it's consistently occurring and popping up for three months.

Yes, and you wanna rule out other things, right? [00:10:00] Like right. If your hemoglobin is sick, then that might be the reason why you're having these symptoms. And so you wanna make sure that other things are checked off list. 

Dr. Linda Bluestein: Absolutely. So severe anemia would explain fatigue and orthostatic intolerance and is treatable and is treatable very differently.

So absolutely, we always need to make sure we rule those things out. So thank you for pointing that out for sure. Um, okay, so there are also physical counter maneuvers that people can, can do, um, like leg crossing, calf squeezes, squeezing your gluteal muscles or your butt cheeks together. Um, are there certain ones that you recommend most to patients?

Dr. Alexis Cutchins: So that's a great question. Yes. So, in the moment there are things you can do, you know, like you said, sort of squeezing your calf muscles, your gluteal muscles, trying to get that blood flow back to the brain. I, um, I recommend, you know, lying flat and putting your legs up against the wall, that often helps kind of.

Counteract a, a flare if something's coming on. Um, but what I also recommend for patients, especially [00:11:00] if you work like at a desk all day, is having something that keeps your legs moving. Like a, a pedal, a bike pedal that you can put under your desk, or there's some that you can just paddle up and down your feet, up and down.

This keeps this circulation going, keeps blood flow pumping up to your brain so that you can try to prevent, you know, a, an episode as well. 

Dr. Linda Bluestein: I love that. That's fantastic. And we're gonna, we're gonna talk about a couple more, just more general pots things, and then we're gonna get more into the venous, um, component of this.

So in terms of like compression and salt and fluids, is there something specific in terms of compression that you recommend? Like. 20 to 30 or 30 to 40 millimeters of mercury. Um, you know how, yeah. Can you tell me about how you do that? 

Dr. Alexis Cutchins: Yeah. So what I recommend to my patients is 20 to 30 millimeters of mercury.

I recommend as high as you can go. The higher the better. So if you can tolerate compression that goes from your toes to your ribs, then that's the best. If you can't, then any compression is better than no [00:12:00] compression. So if you can only tolerate compression to your thigh, then that's okay. If you can only tolerate compression to your knees, then do that.

Um, sometimes people do better with compression to their knees plus abdominal compression. You know, like mixing it up kind of makes it easier to tolerate. Um, other times, you know, if you can't tolerate the 20 to 30 millimeters of mercury, then I tell patients to go down 18 to 20 or 15 to 18 because. Any compression is better than no compression.

I say it multiple times when I see patients. Um, and so, you know, whatever you can tolerate is gonna be better than not having anything at all. Don't give up on the first pair, right? Mm-hmm. Also, you may have to try a couple pairs to find the right fabric that works for you to find the right. Um, you know, some of them are hotter than others.

Some of them cause, you know, itching, inpatients, and so you really have to kind of give it a, a solid try and try a couple different types. Um, I do recommend pneumatic compression boots for patients who really can't [00:13:00] tolerate compression garments. And, um, those are nice because it's 30 to 60 minutes at night, um, and you can get just a boot that inflates on your legs.

And if you do it nightly, then over time you get sort of a decrease in that potential space for pooling to occur. And so over time, it kind of remodels a little bit of the tissues that are in your lower extremities so you don't pool as much during the day. So for people who really can't tolerate compression, I then move to the compression boot, to the pneumatic compression boot at night.

Dr. Linda Bluestein: Interesting. If somebody can tolerate the compression during the day, could they still potentially benefit from the pneumatic compression at night? 'cause those are, you know, different things and you're using them at different times. 

Dr. Alexis Cutchins: Yeah, I think so. Um, I think it may not be as big of a bang because hopefully you're not pulling as much during the day.

But I, I definitely think you can use them together, for sure. Mm-hmm. Okay, 

Dr. Linda Bluestein: great. And what about your target recommendations for fluid [00:14:00] and salt, other electrolytes? 

Dr. Alexis Cutchins: So I usually say 90 to 120 ounces a day of water. And, um, I usually for, shoot for about six grams of sodium. Um, I know that a lot of, uh, recommendations are for 10 grams of sodium a day.

Sometimes I find that that's too much. Um, and a lot of our patients have problems with swelling and kind of interstitial edema and fluid accumulation. So if you go over too overboard, then you start getting fluid in places where you don't want fluid and what the goal is to get it into the interstitial space.

So the key is to have the right ratio of sodium and fluid so that everything stays intravascular. Um, and as long as you're doing that, you don't necessarily need to overdo it on the fluid in the sodium. You just have to get the right, um, amount. 

Dr. Linda Bluestein: Do you have a favorite, um, oral rehydration solution or hydration product or recipe?

Dr. Alexis Cutchins: You know, I have a lot of favorites. Um, every patient is different as you know. Mm-hmm. Everyone has a different [00:15:00] aversion, you know, like, I can't eat Stevia, or I can't do sugar or, and so I kind of have a list of them in my mind. So try to kind of figure out what's gonna work best for each patient. But in general, um, I really like, uh, I like tri oral.

But it has a lot of sugar. And so oftentimes in this population, the sugar will aggravate symptoms and be hyper inflammatory, and that's a problem, but a lot of patients do well with it. Um, the sugar in fact helps with the sodium glucose transporter and the GI tract. So having some sugar, real sugar actually, you know, can be beneficial in terms of getting that sodium uptake.

Um, so sometimes I'll say you could mix that with another one. You know, try to cut the sugar a little bit on it. You can also make your own oral rehydration solution. There's a recipe on the World Health Organization website, and you can kind of tweak the sugar amount in that recipe so that you're getting enough to absorb sodium well, but not so much that it aggravates [00:16:00] symptoms in some ways.

Um, other than that, I like, you know, L-M-N-T-I think is excellent. It has a high sodium content, a thousand milligrams. Um, a lot of people like, you know, drip chop and Liquid iv, those are kind of standards. Um, but uh, you know, I like Gator light. Gator light is, um, an, is specifically more of a rehydration solution than Gatorade.

It has less sugar. Um, I think it's only five grams and it has about 500 milligrams of sodium, so that can be a good one. You just have to watch out for the artificial dyes. That can also trigger. 

Dr. Linda Bluestein: Yeah, that's so, that's so tricky. That's so tricky. I 

Dr. Alexis Cutchins: know, but there are Gatorades though that aren't artificially colored.

Dr. Linda Bluestein: Mm-hmm. Okay. That's that's great. And, and what about IV fluids? What are your thoughts on that? 

Dr. Alexis Cutchins: So, I'm not a fan of IV fluids for general, like maintenance of hydration. Personally, I know some pot specialists really love IV fluids. I will say patients feel better with IV fluids. There's no [00:17:00] question. This is an easy fix, right?

Um, the problem is once you get someone on regular IV fluids, they really need to continue their regular IV fluids, right? And in our population, since we're talking about veins, the veins don't tolerate so many IV axis, right? So they blow, they are fragile. You can't just repeat an iv, you know, every week in the same day, and it just doesn't work, right?

And so eventually these patients beg for a central line or a port. I don't blame them. Um, and then, you know, we place that and they're continuing on IV fluid. This is the only thing that helps me, like I have to be on them, and then they develop a bacterial infection. Endocarditis, like they become very sick in the hospital.

Like the, the, there's risk of death, right? Yeah. So I try to avoid the slippery slope personally, but I do use it in patients who can't eat. Like, there's definitely a, a portion of the population of patients with POTS who have [00:18:00] gastroparesis and other GI illness that just aren't, they're not absorbing food and they're not absorbing water through their GI tract, and they need hydration.

If they don't become hydrated, they're never gonna start using their GI tract appropriately. And so we have to jumpstart that in some way. And part of that is IV hydration. Another time I use it is in a flare, like if you have a GI illness or if you have a viral illness of some sort, giving IV fluids helps you kind of get through that faster and maybe not flare your symptoms long term.

So I'll use it for that as well. Mostly I try to avoid it. 

Dr. Linda Bluestein: That, that's exactly the approach that I take As an anesthesiologist, I'm very familiar, you know, PICC lines, Hickman, Cal, oh my gosh. All, all the things, right? Essential lines. And maybe the risk of complications isn't that high, but if you're that one person that gets the complication, it's obviously, like you said, very, very serious and you can die from it.

So, um, I take the, I take the same approach. Um, so in terms of, uh, specifically, um, [00:19:00] suspecting pelvic venous disease, what is the symptom cluster that kind of. Makes you think, uh, this isn't typical pods. I'm really thinking, you know, you mentioned a little bit of this earlier, but I, you know, I'm really thinking that this is pelvic venous disease.

What are the things that you might be really looking for there? 

Dr. Alexis Cutchins: So, varicose veins, especially of the like upper buttocks area. Upper thigh area, or labial varicose veins, those are gonna be. For sure in my male patient's, um, history of varicose is very telling as well. You know, we know that that's kind of, that is also connected to Gonadal vein Varice.

Um, so if they have that, you know, I think it's important to take a deeper dive there. Um, I will say, you know, in our data, which, you know, we just got accepted for publication, so 

Dr. Linda Bluestein: congratulations. Hopefully 

Dr. Alexis Cutchins: it's coming out soon. Um, 80% of the patients with pots that come to see me have a diagnosis of pelvic venous disease.

Wow. So it's not, um, you don't see them [00:20:00] necessarily in isolation. Right, right. Um, but you know, those varicose veins and then multiple pregnancies, um, that can initiate significant pelvic disease, pelvic venous disease. Um, and so those are kind of red flags that definitely would make me go down that route.

But, um, it's more common than you think. And the question is, who do we treat? And you know, what do we do with it? Right. 

Dr. Linda Bluestein: Yeah. And, and if there's a community clinician listening to this, we have lots and lots of healthcare professionals that listen and if they're listening and they think, oh wow, I think I have a patient that might have this.

I wanna work this up. What would be the first line imaging that they should order? And is there specific phrasing that they should use so they make sure that they get specifically the correct test or tests. 

Dr. Alexis Cutchins: Yeah. This is. Challenging question to answer. The easiest to get is an ultrasound of the pelvic veins, so like an iliac vein ultrasound is what you can [00:21:00] call, um, also an ultrasound of the lower extremity veins looking for venous insufficiency, so dt, but specifically for leaky valves in the veins of the life.

Um. You wanna put on those orders. Pelvic pain, concern for pelvic venous disease, concern for pelvic vein obstruction. The studies will get covered with a diagnosis of pelvic pain. Um, the lower extremity study will get covered with a diagnosis of lower extremity pain or discomfort or swelling, so they're pretty easy to get covered.

Um. The next line is an MRI of the veins of the pelvis. It's an M RV of the abdomen pelvis. Um, this isn't often covered by insurance unless you have an ultrasound of the pelvis done before. The thing is most of my patients have had pelvic ultrasounds for pelvic pain in the past. It doesn't have to be a pelvic vein ultrasound.

It could be any pelvic ultrasound. That's sort of like the first step in the pelvic pain workup. [00:22:00] Then they can go to M rv. The MRV order, you know, I, us, I, I, I order that for pelvic pain as well, but I usually put on their concern for mayner or left iliac vein compression or concern for Nutcracker left renal vein compression.

Um, and, you know, most of the time it will get covered. Uh, the problem with imaging is that the radiologists who read these studies aren't very familiar with. Diagnosing it or Right. They think it's like an incidental finding and they don't need to talk about it. Right. Even if you say specifically in the order, I think this patient, they still won't comment.

You know? And so that's the tricky part, and that's when you need that imaging. If it comes back negative and you have a high suspicion, you need the imaging reviewed by someone who does this on a regular basis, who sees these patients essentially. 

Dr. Linda Bluestein: Yeah, that's a huge part of the problem. The the radiologist reading this studies, whether it's for this or for upper cervical [00:23:00] instability or.

Tar loss cyst or all these other things that I feel, I feel like so many radiologists think are incidental findings and you know, maybe in a certain population they don't cause problems, but in people that have connective tissue disorders or, and or pots and or mast cell activation, like they, yeah, these, these things are definitely problematic.

So we wanna know about them. Um, we're gonna take a quick break and when we come back we are going to talk about what to do when you actually find pelvic venous disease. So we will be right back.

I am super excited to tell you about the bendy Bodies boutique. I am so proud of our fierce styles and flexible designs. These are created by hypermobile artists. For hypermobile shoppers. There are so many fun items from clothing, accessories, home goods, and my favorite are the bags. I especially love the weak, weaker tote with one of the EDS tough designs.

Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. [00:24:00] For more information, please visit bendy bodies boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

We're back with Dr. S, so, um. So excited to jump into interventions, but before we jump into interventions, we were talking about the workup, and I just have one other question about that. What about intravenous ultrasound, because I understand that's a new thing. When is that appropriate? Who should do it when?

Um, what can you tell me about that? 

Dr. Alexis Cutchins: So usually in order to get an intravascular ultrasound or they go together covered, you have to have some, some other diagnostic, um. Of [00:25:00] pelvic venous disease. So like the M RV or the, or the ultrasound. Um, those stu those more invasive tests won't be covered unless you have some evidence that the disease is there.

Uh, but um, when they are covered, it's the gold standard. So, um, really, you know, ultrasound's about 50% accurate. MRI is about 70 to 80% accurate. If you've done all of that and you're still not getting answers and there's a high suspicion, you can probably move on to the venogram and ivus in the right hands for, you know, someone who does this a lot will be able to get that covered.

Um, but the venogram and ivus is interesting. So the venogram is injecting dye into the veins and that gives us a picture of what the veins look like and where the may be, and also what collateral. The IVUS is a little catheter that goes into the vein and we pull it through the vein and it looks at the diameter of the vein with ultrasound and it, and it captures the length of the vein [00:26:00] and it tells you what you know, what the width, what the diameter of the vein is, the whole way.

So you can see actually the vein is going along and that narrows, and then it opens again. And when it narrows, you can see the right iliac artery above that, mushing it down. You can see where the spine is. So you can actually see this all on. Um, an ultrasound of the inside of the vein, so it's very accurate.

It's, you know, pretty much a hundred percent, you know, accurate in what we use to finalize a diagnosis. 

Dr. Linda Bluestein: I actually got to see somebody do that, uh, locally here, and it was really, really fascinating. I didn't even know that that was a thing, to be honest, before I, before I went there and it was like, oh, my technology, you know, just keeps a advancing.

We, we can't cure the common cold, but no, we can do, yeah. Or we can put tiny 

Dr. Alexis Cutchins: little catheters with ultrasounds on them and put them inside blood vessels. Yeah. 

Dr. Linda Bluestein: Yeah. We can't cure the common cold, uh, depression, insomnia, all these like basic things. Right. Complicated, but, but, uh, you know, hugely prevalent things.

Okay. [00:27:00] So, um, so that's, that's super valuable information. So what about embolization and stenting? So who would be a good candidate for, um, for one of these types, procedures, and what kind of response rates and time to benefit do you normally quote people? 

Dr. Alexis Cutchins: Yeah, so, um, that's an excellent question. You know, in the world of pelvic pain.

We've been treating pelvic varis for a very long time with sclerotherapy and coiling. So, um, it, you know, that has been something that's been around. People have recognized now that is a cause of pelvic pain. Treating it, you know, will help pelvic pain improve. Um, there's no, there are no, there's no data showing necessarily that it fixes pops.

But, you know, theoretically you would imagine that if you're not pulling that blood in those varicose veins in the pelvis, it should help and people symptomatically improve, not just from pelvic pain, but other things. I don't have numbers, um, because in the era that [00:28:00] I've kind of fallen upon this. Um, this diagnosis and this, you know, discovery.

Um, the, the doctors I've been working with really start with iliac vein, um, stenting and not with sclerotherapy. Mm-hmm. We find that iliac vein stenting sometimes fixes those varicose veins of the pelvic pelvis on its own. So after you've decompressed that, that compression and you've allowed for blood flow to go in the right direction, those varicose and collateral veins kind of shrivel up and dissolve on their own.

In some circumstances, when you open up the iliac vein, let's say you don't get complete resolution of those pelvic varis, and then we go back in and do sclerotherapy of those vessels. But I think now this isn't, I wouldn't say everyone does it this way, but the people who understand pelvic venous disease and patients with EDS, um, probably those patient, those people, the ones that are really experts and kind of dedicated a lot of time to this field, understand that.

[00:29:00] Probably opening up the iliac vein first is appropriate, and then trying to do the sclerotherapy next is the way to go. Um, I can tell you what our data shows, which is, um, one year out in, in almost 300 patients, one year out after, um, after stenting the iliac vein, we see about 75% of patients with orthostatic intolerance have improvement in symptoms.

44% of patients have resolution of orthostatic intolerance by, um, questionnaire. So this is all surveyed, um, information. This is not like we did a table before. We did a table after. Okay. So we see that, you know, about 70% improved, 45% resolve with that criteria. Um, in that same study, we saw dramatic improvements in chronic, in pelvic pain and in interstitial cystitis.

So, um, you know, it's not a hundred percent like everything else in pot, in the pots world and in the EDS world, there's a lot [00:30:00] of things to treat, right? Mm-hmm. And I never tell patients that they're gonna instantly feel better after this procedure, but it does help. Move the needle a little bit in terms of their chronic medical condition to, you know, get them a little bit more active, get them a little bit more, like, less reactive, more tolerant of medications.

All I see, all of those things when patients get their venous disease fit. So, um, it's one step. It's not a cure by any means, but most patients also find this in the improvement in pain is really substantial, and that is such a driver for so many of our patient symptoms that I think that's valuable as well.

Dr. Linda Bluestein: And, and even if some people can get off of a medication or two or, you know. Yeah. Um, so long as they're not having problems with the stent. So I guess a couple thoughts I had was one, do we, do you do any kind of testing beforehand to make sure they're gonna tolerate the stent material? Because we know all these people have mast cell activation, so they might be, they might react to the, um, to the stent material.

[00:31:00] And, um, and then the other question that I had was just from a. Comfort standpoint of, I'm thinking about my husband, who's a urologist, and he would put stents in the ureter and, and people don't like stents in the ureter. They're not comfortable. Yeah. Right, 

Dr. Alexis Cutchins: right. So, um, in terms of kind of the mast cell component of this, it's very real.

Um, and there's a lot of fears. Uh, a lot of patients have nickel a.

You know, almost, they're almost a hundred percent nickel free, but there is some there. Um, and you know, some folks have done testing in patients who are true, very reactive to metals testing, like patch testing with the stent. So they take a little piece of the stent and put it on your arm and see if you get a big rash from it or not.

Um, and there's a couple that could be used. They have different materials, so you might not react to one, but react to another. And that could maybe predict. What your, the inside of your vein is gonna [00:32:00] do with the stent, but honestly, it's like a completely different process. Like Right. The T-cell mediated cutaneous rash is completely different from whatever's going on in the middle of the vein.

Um, what I'll say is that as a cardiologist, you know, I've been, I've dealt with stents in the arteries my whole life, you know, or my whole career. Um, and we put them in everywhere. Like you come in with a heart attack, you get a stent, you come in with a heart attack, you get a stent. We're not asking you if you have a nickel allergy, right?

Right. We're not asking you if you have hypermobile Danlos. No. We're putting a stent in your artery. There's no time 

Dr. Linda Bluestein: you're gonna die. So yeah. You're, 

Dr. Alexis Cutchins: you're having a heart attack. Right. And obviously this is not the case for pelvic venous disease. We have more time to think about it, which is great. But, um, in my career.

Maybe I have, I have maybe one patient that I suspect might be reacting to the stent that's in their artery, and I don't even know if it's true, you know, but she just has a lot of symptoms that would make me think maybe because I've tried everything and nothing is, you know, I can't really get [00:33:00] to that symptom that she's complaining about.

And I wonder if it's, you know, something to do with the stent that's in her heart. I mean, she tells me that when the stent was placed, she felt better. That's good. I just wonder if some of the more chronic symptoms she has may related. So, but that's one patient in thousands, um, that I know of that I even think might be reacting.

Right. So I think that the, um, that there is endothelialization of the stent, like it becomes sort of part of the vein. It doesn't react with the bloodstream anymore. After that you're kind of dumb and just sitting there inert theoretically. Mm-hmm. Is there a risk? Absolutely. I mean, is there always a risk For sure.

Um. As far as, um, you know, are this what happens with the stent once there, are there other risks involved, like thrombosis of the stent or moving of the stent, you know, all those things. Um, I just had probably had 400 or 500 patients now have this procedure [00:34:00] done and maybe two of them had a non occlusive plaque or a non occlusive thrombus that we treated with blood thinners and it went away and then it has not recurred.

Um, so I don't think it's a huge risk. No one has had any kind of stent movement. Um, I would say the only issue with the procedure is maybe any complete treatment. Like do you need a stent on the other side or is the stent not long enough? Do you need to go back in and put in a little bit longer stent?

So when these stents are placed, there's, there is back pain. There's no question. Some people have more than others. Usually I quote two to two to 14 days of significant like back pain that's gonna put you on your butt. You're not doing anything right. Most patients don't go beyond two weeks. Some have, I have patients who have had pain for four weeks or longer.

Sometimes we need to do like a al or sacral block there to try to relieve that pain because it's just kind of a circuit that's not stopping. Uh, you can [00:35:00] imagine that the, the vein that's crushed on this.

And other stuff. So there's gonna be pain and some people, you know, have less pain than others, and some people get over it faster than others, but there will be pain. I haven't seen anyone with prolonged pain like six months, 12 months out. You know, usually it does resolve, it's in rare cases, it takes longer than four weeks.

Dr. Linda Bluestein: What about contraindications? Are there certain people that even if you diagnose pelvic venous disease, you would avoid doing some kind of intervention on. 

Dr. Alexis Cutchins: That's an excellent question. Um, I think you have, if you have severe left renal vein compression, and I'm talking severe because a lot of patients have some left renal vein compression along with this, um, then that needs to be a conversation with a kidney transplant specialist, someone who works with nutcracker patients and the interventional [00:36:00] radiologist who does venous disease treatment to see kind of what the timing of all of that would be.

And you know, what, what would work best? I have seen in some patients who get their iliac pain, stented that their Nutcracker symptoms worse or get, you know, flare I've seen in others that they improve. So I dunno what the mechanism is, but, um, it could go one way or the other. So you have to be prepared for that.

Um, there are, you know, there are people with such extensive disease that it may not be, it may be just too hard to treat. Interven procedure, and that might be something that either needs to be surgically managed or left alone. Um, if you have a known allergy to a stent, then obviously I wouldn't put another one in.

Um, but there's really not that many contra vacations in opinion. Um, I've seen people. Follow up have had, you know, pelvic venous disease treated and iliac vein stented, 20 years out, 30 years out. And these are the old [00:37:00] stents, like not the good new stents. These are the ones that were put in first. Right?

It's like they're not even there. They forget that they had that procedure. Sometimes I have to even, I like, I'm looking through the chart, I'm like, oh, you had, you know, these stents put in what was going on there? And they're like, oh yeah, that was way back when, when, you know, I had a dvt, blah, blah, blah.

Right. And so, um, they really do seem, in my opinion, in to last, now I don't have hundreds of patients that I have 20 years out, but the ones that are, seem to have, you know, be doing just fine with them. 

Dr. Linda Bluestein: And this next question could literally be an entire separate podcast episode all on its own. So, recognizing that, um, stabilizing mast cell activation before a procedure.

Imaging surgery, you know, is obviously important. Um, yeah. For especially, especially for c for clinicians who might be listening and are like, I wanna just know a few simple premedication things that I can do and, [00:38:00] or what can I do in the couple of weeks or whatever before a procedure? Um, that, you know, maybe some general rules of thumb or whatever that they can adapt to that particular patient.

Dr. Alexis Cutchins: Yeah. So it is really critical to have the mast cells. You know, as stable as possible, and to have patients who have mast cell activation syndrome to not be flaring in their symptoms or really debilitated from their mast cell activation syndrome at the time of the procedure because it'll only flare more during any kind of procedure, let alone this one in particular.

Um, I. Obviously, you know, I spend a lot of time treating mast cell activation syndrome and the treatment of patients with pots, and so I hope that all my patients are sort of on a regimen to begin with, but I make sure that they are taking, you know, twice a day, um, H two blockers at least twice a day. H one blockers.

Um, they should be on vitamin C. They, um, you know, if they're on keto and make sure that they're taking it, [00:39:00] um, if they're, you know. Um, if they're taking low-dose naltrexone, that's one where that we usually stop actually for the procedure so that they can take opiates post-op for the pain. Right. Um, and so, you know, that's one to note.

Um, but I really try to, to stabilize, you know, to get them as stable as possible on the mast cell regimen. Um, as I can the, you know, these patients do have sort of, some of them will have a little bit of a CS response post dent placement. I think of it in the same way. You know, we used to see this in, when we first started doing transcatheter aortic valve replacements and we opened up the aortic valve, these patients would have this inflamma systemic inflammatory response that was really dramatic and they'd had to treat it, you know, and monitor it.

Um, and I wonder if it's a similar process that you're opening up this obstruction that's been clo like sort of closed for a long time, then all of a sudden you're allowing this blood flow in a place where there wasn't any. Um, if that's sort of triggering the systemic inflammatory response. And so we see that, um, [00:40:00] post-op also in some cases, not in all cases, and we often treat that with a short course of steroids.

Um, what I will say at the time of the procedure, I think it's useful to give IV Benadryl, IV Ativan, IV Pepcid, you know, things that are gonna help in the moment to really kind of calm everything down. Um, and so, and obviously to keep all that mast cell, mast cell targeted therapy. Postop 

Dr. Linda Bluestein: and in terms of.

Again, this also could, could be its own completely separate episode, but in terms of where you start, if you're treating pots with medications, kind of shifting gears a little bit. Yeah. Um, do you have preferences between, you know, midodrine, ivabradine, flu de cortisone, beta blockers, tig, I mean, again, I know.

And are there certain like side effect red flags that make you switch? Again, recognizing that we could talk about this for probably two hours. Yes, we could. 

Dr. Alexis Cutchins: Um, you know, I take each [00:41:00] patient, I take a very individualized approach, so I really try to cater kind of what I start patients on to, what their symptoms are specifically and what they're experiencing.

Um, you know, once I've gotten them on a good amount of fluid and salt compression, you know, they're really trying hard with those lifestyle modifications. A good diet. Um. Then I start adding medicines and I've probably, if a patient comes in with a low blood pressure, high heart rate, I usually start with mid.

If a patient comes in with a normal blood pressure and a high, and, and, and thoughts, you know, tachycardia symptoms, um, then I usually start with a beta blocker. Um, I personally like nadolol and acebutolol. Nadolol is, uh, non cardioselective. Acebutolol is cardioselective. So depending on whether the patient has asthma, um, I'll choose one or the other.

Problem with naval, is it? Cause a lot is, causes a lot of weight gain, but the benefit is that it's very much a, a systemic sympathetic suppressor. So it, it really kind of calms everything [00:42:00] which patients often love. Um, and not everyone gains weight on it, so, but it's something to be careful of. Um, the Acebutolol works really well in my younger patients with really high heart rates.

I dunno why, but it's very effective in that kind of 18, 16 to 24-year-old population with just enormously high heart rates. It seems to be more effective than other beta blockers. Um, I tend to stay away from fluorine, oric, cortisone, first line, just because people have so many side effects from it. They gain weight, they have headaches, like it's just not well tolerated, but I'll use it.

If needed. And sometimes it, it's actually a great drug because it's once a day, people can be very compliant with it and it can work well to raise blood pressure. So as far as you know, standard pots medicines, that's kind of where I start. I do like SSRIs and pots. They do help with venous return. Um, I use Zoloft and Prozac probably the most.

Prozac probably the most, just because it doesn't cause much weight gain. Um, I like Lexapro a lot [00:43:00] too, and I use. Weirdly, Lexapro helps in those patients that have these like GI kind of like events. You know, some people will have these like dramatic diarrhea events and then they pass out and they have this my heart rate.

Dr. Linda Bluestein: Mm. 

Dr. Alexis Cutchins: For some reason, Lexapro is really good at treating that. Don't ask me why. I don't know. But so, you know, everyone's different, right? So if they tell me their story, they're like, well, yeah. When you ask about the, your GI tract, like, well, I had these episodes, then, you know, maybe I'd start with Lexapro.

Right? Um, but I do like SSRIs in general. I know a lot of patients can't tolerate them and they have, um, abnormal metabolism of SSRIs and that always comes into play. Or they've been on them before they work, so, you know. It's always a conversation. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Alexis Cutchins: You mentioned fear Tomine. I think it's great for fatigue.

I don't usually use it first, but it does really help with high heart rates, um, in the right patient. So I'll add it in, um, often, you know, sort of after I've gotten them [00:44:00] on a couple other med, um, desmin I used to help with fluid retention. Um, that could be a good one. It can be a little tricky because it's just can become hypo needs on it.

So you can be very careful with drops sodium. Um, but those are sort of some of the front runners for me in terms of starting medication. 

Dr. Linda Bluestein: I am looking at my remaining questions of which there are many, and I am thinking that this is such great information. Would you be willing to come back to do a part two?

Because I feel, I feel like. That would be better served than to try to, uh, you know, obviously, you know, a lot of people have brain fog and fatigue and so of course they can hit pause and then come back to it. But at the same time, I feel like if we can have a second part of this conversation, um, I would really love to do that because I think that there's just.

So many other things. I wanna, I wanna ask you about Long COVID. I wanna ask you about, you know, more tips for clinicians who want to [00:45:00] help but don't really know where to start. Um, yeah. And so I literally feel like I've gotten through maybe half of my questions that, that I wanted to ask. So, so if we could do a part two, um, yeah, I think that would really be fantastic.

And so we will then go ahead and wrap up with number one, um, a hypermobility hack, and then if you can tell us where people can learn more about you. 

Dr. Alexis Cutchins: So, you know, the hypermobility hack in my role in a POTS is compression. Mm-hmm. I think it helps in multiple ways. You know, it helps with the pots, but it certainly does help with joint stabilization and, you know, other, um, you know, other nuances to the hypermobile population.

So, I mean, I'm all compression, compression compression every day. Right. Um, you can find me, um, I'm on Instagram, ctc. I, um, have a website, um, it's www dot cuttin cvm com. Um, I'm opening up practice as we speak in New York [00:46:00] City, so I'm working on that. We should be opening our doors to November. It's very exciting.

Dr. Linda Bluestein: That's very exciting. 

Dr. Alexis Cutchins: Yeah, it is. It's, um, a little overwhelming and terrifying, but yeah, it's super exciting. 

Dr. Linda Bluestein: Okay, so I have a patient that I literally saw yesterday that I thought maybe you were in New York, but I kind of had forgotten about this. I already have, I already have patience for you. So, great.

Yes. 

Dr. Alexis Cutchins: Send them my way, please. Yes, 

Dr. Linda Bluestein: yes, I will. I will. And, and I, I hope it's okay to ask you this, but one thing that I have had several listeners ask me to start asking people just so that they don't get their hopes up and then get disappointed, um, about. State rules and also insurance so that, so that they know like what the deal is before they even call the office, 

Dr. Alexis Cutchins: right?

So I'm not taking insurance. Um, it's gonna be a fee for service model, so every appointment is gonna be a certain charge. The initial visit is gonna be longer and cost more than follow up. You will be able, this will all be on my website once it goes [00:47:00] live, which it should happen in the next week, I'm hoping.

Um, but I wanna be very transparent because I know it's hard for patients to call, get their hopes up, make an appointment, then realize there's no way they're gonna be able to afford it. Right. We are partnering with something called Sheer Health, and I dunno if you've heard of this, but it's a program that helps patients with, um, reimbursement.

So they, um. I'm, you know, I'm paying a small monthly fee so that the patients that see me don't have to pay for their assistance in getting procedures reimbursed, um, imaging reimbursed, uh, um, out of network office visits, reimbursed, et cetera. So, I'm hoping that's gonna help, um, a little bit with the idea that unfortunately, um, the, I'm not gonna be insurance.

Um, the, as far as you know, I am gonna be doing telehealth. I'm licensed in New York. I'm licensed in Georgia, uh, Colorado, Tennessee, Pennsylvania, Ohio, [00:48:00] and Wisconsin. Oh, 

Dr. Linda Bluestein: yay. Colorado and Wisconsin. That's where I have licenses, 

Dr. Alexis Cutchins: so that's great. I can see any of them over telehealth, um, as long as they are in that state.

Dr. Linda Bluestein: Mm-hmm. Great. Great. And I will definitely put links to, um, you know, some of the articles that you've mentioned, shear health. Um, so you can, people a super bill like I do so they can try to get reimbursement for that. Right. And some people do well with that and other people, uh, you know, definitely it's, it's harder, um, or they don't get any reimbursement at, at all.

So, but we know that this is a time consuming process, but I appreciate you being transparent about that so people can know right from the get go. Um, so, so Dr. Cushions, thank you so much for chatting with me today. This was such a great conversation. I'm really looking forward to part two. I think it's gonna be really great.

And the other cool thing is, um, for the people listening right now. You can submit your questions because probably there'll be enough of a gap in between that. We probably will get an influx of questions, so, uh, so there might have to be a part three. We'll see. [00:49:00] 

Dr. Alexis Cutchins: Well, that sounds great. I really appreciate being here.

It's been super fun and I'm looking forward to the next time.

Dr. Linda Bluestein: Well, I am so grateful to Dr. Cuttin for coming on the podcast today. She is such a wealth of knowledge and I am sure that you will join me in being so grateful for her wealth of information and especially for the opportunity to ask questions. So that when we have part two, we can incorporate the things that you want to hear more about.

And thank you so much for listening to this week's episode of The Bendy Bodies with the Hypermobility MD Podcast. I have so many other resources I'd like to share with you, but one of them is my bendy bulletin. Please check that out on substack@hypermobilitymd.substack.com. You can help us spread the word about joint hypermobility and connective tissue disorders by leaving a review and sharing the podcast.

This really helps raise awareness about these complex conditions. Did you know that I also offer one-on-one support for both clients and [00:50:00] healthcare professionals? Whether you're living with hypermobility or caring for people who are, I've got your back. Check out my coaching and professional mentorship options on the servicesPage@hypermobilitymd.com.

You can find me, Dr. Linda Bluestein on Instagram, Facebook. Twitter or LinkedIn at Hypermobility md you can find my amazing production team, human Content at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. As you know, we love bringing on guests with unique perspectives to share.

However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team, although we may share healthcare perspectives on the podcast, no statements shared on Be Body. Should be considered medical advice. Please always consult a qualified healthcare provider for your own care.

To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification and licensing terms and HIPAA release terms, or reach out with any questions, please visit bendy [00:51:00] bodies podcast.com. Bendy Bodies podcast is a human content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.

Thank you so much for watching. If you enjoyed this video, give it a thumbs up and leave a comment below. I love getting your feedback. Make sure to hit that subscribe button and ring the bell so you will never miss an update. We've got plenty more exciting content coming your way, and if you're looking for more episodes, just click on one of the videos on the screen right now.

Thanks again for tuning in and I'll see you in the next episode.