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Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are speaking with Dr. Simone Erdner , host of the Nutcracker Syndrome podcast and associate professor of Sports Psychology, and I'm so excited to talk to her about both of these things.

Simone, thank you so much for joining us today.

Simone Erdner: Yeah, thank you for having me and highlighting my story.

Jill Brook: Well, I've been listening to your podcast and boy, I so highly recommend that to anybody who is dealing with Nutcracker, but I don't wanna get ahead of ourselves. I guess maybe we can just start by asking you to tell us a little bit more about yourself.

Simone Erdner: Yes. In a nutshell, I was born into this world very athletic. I was always playing sports growing up. I loved academics too. I love learning. I'm a very curious person, so hence the professor role. I then lived, so I was an athlete, was in school for [00:01:00] 10 years, got my PhD, became a professor, and then a little non-traditional, I moved into a van full-time for two years. And I, I teach fully remote, so I was able to travel and teach outta my van and, and with internet and as long as I had a computer. And it was in March of 2023, which is when my first symptoms started while I was in the van in Mexico. So a little nerve wracking. But as far as POTS goes, now that I'm learning more about it, it's been around the whole time. I remember when I was in middle school, high school there was one significant episode when I was a kid, probably middle school. I got up in the middle of the night, went to the bathroom, and I woke up on the bathroom floor. My brother was chronically ill. He had a lot of really rare sinus problems growing up, and so I never told anybody about it, 'cause I was like, oh, they're already so stressed with this. So, and then I woke up and went to bed and woke up feeling fine. So I was like, there's [00:02:00] nothing to complain about. But now looking back, and one of the working theories of vascular compressions, and again, working theory similar to POTS, one of the working theories of Nutcracker is that you have a genetic predisposition to it. And whether it's growth spurts that changes the, how the anatomy lies, whether it's losing a lot of weight, whether it's hormones, whether it's autoimmune. I mean, there's so many working theories on what leads from it being asymptomatic to symptomatic.

But I do think when I found out POTS was comorbid, at first I was like, ah, I don't have that. But then when I went and got diagnosed with it and I decided to get the workup for it, I was like, oh, actually, my first memory of of POTS, like episode that I didn't know as POTS was when I was in middle school.

So I think I had always dealt with it. And do I know maybe if it was a symptom of Nutcracker at that time? No, simply 'cause I was asymptomatic with, I likely had Nutcracker [00:03:00] phenomenon that was never diagnosed formally. And then I became asymptomatic switching it into Nutcracker syndrome. So went asymptomatic into symptomatic when I was 33.

So March of 2023, I was two months into being 33, and that was when my first symptom hit, which it took us a good year and a half. I mean, I lost my uterus and ovary when I really needed a kidney auto transplant. But POTS was there the entire time. I just hadn't really, I was so new in the vascular compression space that it took me a little while to see how POTS and vascular compressions go hand in hand.

Jill Brook: Yeah. Yeah. So I wanna make sure we don't leave anybody behind who, who is wondering what Nutcracker Syndrome is. So on this podcast, we've had a number of episodes where we have talked about vascular compressions and POTS, and we've had some vascular surgeons, some interventional radiologists, cardiologist, and usually though [00:04:00] they've talked about May-Thurner Syndrome and POTS. We haven't really covered Nutcracker Syndrome yet.

So I guess just in case there's people out there who have either forgotten what that is, maybe you can give us a quick reminder of what is the vascular compression in general, and then what is Nutcracker? Because I think you said this on your podcast, but it's like the one everybody hopes they don't have, right?

Simone Erdner: Yeah. Yeah. That, I mean, MALS and, and superior mesenteric artery syndrome, two others are also heinous surgeries. Okay, a bigger picture, Nutcracker essentially came a little bit more of my identity because it is more invasive, and then I have the podcast. I was diagnosed with May-Thurner. I had a 88% compression, something of that nature.

And depending on which IR you're talking to, they either believe you can provide a percentage or not. So there's some of that. For any IR that's listening to this, I have heard the gambit from multiple. I did have May-Thurner. So my, my very quick medical journey was this. My first symptoms [00:05:00] started March of 2023. That symptom was that I was down in Mexico having the time of my life, and all of a sudden I got this really weird whoosh of like emotional, hormonal frustration. And then immediately after, I always would get this sensation, like, oh, I just started my period. So I got that sensation and I was like, well, this is weird. It is not anywhere near my time to be having my period. And when I went to go put a tampon in, it was like tar black. Not just like, oh, that's a little brown, old blood. It was just like, this is a red flag. But I'm in Mexico and I'm like, okay, in the next month, I went ahead and called some places in Colorado, got on the books for May. I go. I was diagnosed with stage four endometriosis through a diagnostic laparoscopy, and also told that you really look like you have a very inflamed uterus. It very much looks like adenomyosis. I got a second opinion. I then moved forward with the hysterectomy, stage four endometriosis excision, and this is a really vital point I wanna make here.[00:06:00]

I was also, during that time, having monthly, sometimes twice a month, ovarian cysts ruptures on my left ovary. And the reason why this is really pivotal is the left renal vein, which Nutcracker's the compression of the left renal vein, was compressed and it was refluxing blood down my left ovarian vein that's connected to the left renal vein and engorging my ovary.

So they weren't, they were hemorrhagic cysts and hemorrhagic means blood filled. And so there were these blood fill cysts. I mean, five centimeters was my kind of average size, that every month for six to seven, eight months were rupturing. And sometimes I'd have multiple ruptures a month. So when we went in for the hysterectomy, we had agreed that, hey, you're probably gonna have pretty bad damage on your left ovary. What do you think about taking it? And I was like, yeah, take her. And looking back, I'm so glad I decided to do that, because there is a massive amount of women out there, I, I posted a reel on [00:07:00] Instagram that said I lost my uterus and left ovary when I really needed a kidney auto transplant to fix Nutcracker syndrome.

And like everybody came outta the woodwork. They were like, oh my God, this happened to me. And the reason why losing that left ovary was so vital, because I thought all my issues were gynecology related. I was having all this pelvic pain, ovarian cysts rupturing, horrible, like this black tar blood. So everything was pointing to gynecology and every gynecologist was like, yeah, this is a gynecology issue.

When I had the hysterectomy and I especially lost my left ovary, I got two to three really good months and then everything went crashing down and all these random symptoms started coming up like the classic left flank pain of Nutcracker. So that was the start of the journey. Now to get back to what you were talking about on like what is vascular compressions, the reason why I wanted to, it's very important to talk about gynecology, is in partnering with my current gynecologist, Dr. Olga Muldoon in Denver, Colorado. She literally saved my life. I would, I can't recommend her [00:08:00] enough to people. She started chatting with an interventional radiologist at like a professional gathering situation, and I was starting to go downhill again. And when she did my hysterectomy, she didn't know about vascular compressions.

And then after when I started having other issues, she's like, I've been speaking with this IR. She has mentioned there's a parallel between vascular compression symptoms and endometriosis and pelvic pain. So before we go take your right ovary, which we thought was the remaining problem, go to an IR, interventional radiologist.

That's when I went. She said, let's leave no stone unturned before we throw you into medical menopause as a 34-year-old woman at that time. So I go to an IR, they look at a previous CT that I had at the ER, and they were immediately like, you have severe Nutcracker. I mean, it's clear on the CT. Let's move you to the venogram, which is the gold standard for capturing vascular compressions.

And based on my other symptoms, they [00:09:00] prepared me. They said, once we get in there, it's likely that you do have May-Thurner as well. Do you want this to just be a diagnostic venogram or do you wanna stick a stent in there as well? And I decided the latter. I said, do the venogram. If it's significant, throw the stent in.

Because at that point I was, I was desperate. I was just like, you know, very much like, if I'm gonna live like this, I'm not gonna live anymore. You know, I'll move to a state with, with assisted suicide. So they stuck the stent in, woke up, she was like, you have a very the 88% compression. They showed me the images.

It was very, I mean, just there was, you could see where the compression was at. I also was diagnosed with vascular insufficiency in my legs. And a lot of that happens with May-Thurner, as you've probably heard in these others of like, there's the pressure of that blockage at that left iliac vein. So May-Thurner is a compression of the left iliac vein that runs kind of if you think from your belly button down to your left hip.

So it's a pretty significant vein and pretty large [00:10:00] circumference wise. The backup from that can lead to venous insufficiency in the legs. So, we fixed  May-Thurner with the stent. My vascular insufficiency in the legs got a little bit better. And I was told that, hey, this could go one or two ways.

Fixing  May-Thurner could, all your Nutcracker syndrome symptoms could go away. And Nutcracker Syndrome is a compression of the left renal vein specifically the left renal vein. So, I don't, there's no anatomy on the right side that would compress that vein.

Jill Brook: So just to clarify, so, so the vein that's running to your left kidney is basically getting smushed. So you're getting bad circulation to the kidney, but it's also making a lot of blood back up into the pelvic area.

Simone Erdner: Yeah, so it's not necessarily an issue of, of bad circulation to the kidney because any, it's the arteries that send blood to your body, to your organs. It's the veins that bring it back to the heart. So the issue with vascular compressions is that you, your heart's doing a great job pumping it to the [00:11:00] organs. When there's a compression, that blood can't get back to the heart, get circulated, get cleaned out, and then get sent back.

So, my compression of the left renal vein, it is compressed between the aorta and the superior mesenteric artery. There is also that's the classic form of it. There are other, and I'm like blanking on the name. It's like some people's that are the left renal vein, it's a, a genetic anomaly where they're compressed between the spine and the aorta, I believe. But mine was traditional. And my working theory is a bit that it was hormone related, 'cause my hormones were also getting really outta whack. But we also don't know if this is the chicken or the egg. Was it that if blood's not flowing properly to my ovaries, then the hormones aren't working properly.

But we do see a lot of women in, at least I also see this in the statistics on my podcast listeners. It's largely women that are affected. And it's mostly 35 to 45 range. Some kind of creeping into the 55. So around the time that pre, peri and menopause and post menopause are coming about, and with when [00:12:00] estrogen starts to deplete, that impacts the vascular integrity.

So that's a working theory, that as hormones start to get a little wonky, that you do start becoming symptomatic for vascular compressions. SMAS, Superior Mesenteric Artery Syndrome, MALS, Nutcracker, and May-Thurner. So blood's getting to the kidney, but it can't, it's struggling to get back to the heart and the blood's gotta go somewhere.

So to circle back to that left ovary and why I am really glad, I went in not knowing if I'd wake up and still have my ovary, but looking back, it was really a pivotal piece in me figuring out the answers I needed and not being delayed in getting the answers. Because once the left ovary was taken, they ligated the left ovarian vein pretty far up within a, she said she gave it pretty good parameters so that that ovarian vein didn't reattach to my abdomen and cause like a phantom ovary or whatever the medical term is.

And when the left ovary was taken, the main [00:13:00] highway, the main reflux highway was my left gonadal, my left ovarian vein. So when they took that away, the blood had to go somewhere else. So my Nutcracker specifically was presenting as gynecology problems. It was refluxing into my ovary. When I looked at the images, my first gynecologist did in my laparoscopic, my pelvis was just like super inflamed.

She even wrote in my notes super vascular. And I remember asking her about it and she was like, oh, some people are just that way. And I'm like, okay, lady. I went to another, this was not Dr. Muldoon. I ended up firing that OB/GYN, went to Dr. Muldoon. There's some working theories too, that there's a relationship between vascular compressions and endometriosis, because if you think about reflux blood, it's causing a havoc and, and it's a fibroids, adenomyosis, endometriosis is a dysfunction of the body. So some of these, there's no research to support this, but I do think it's, I, I put this out there, so if anybody's listening to it and they're like, oh, maybe I should research that. [00:14:00] Maybe I should go down that route. So then the left ovary was taken. Two to three months later, I started having the pelvic pain, flank pain.

That's when I got the diagnosis of May-Thurner, fixed that via a stent. It did help my vascular insufficiency in the legs. I got two good weeks of no pain post stent. And then one day, two weeks later, I was washing dishes and all of a sudden I was like, man, my thoracolumbar area in my back, right where the left renal vein is, specifically on the left side is just burning.

And it just was downhill from there. So, there's some theories about treating top down with vascular compressions because how gravity is and how blood is. So some people believe in the like, okay, well figure out, get the diagnostic for all the vascular compressions and figure out which one to treat first based on which one's at the top. And it could fix everything below.

I've gotten some mixed reviews. Now that I've been in this space for going on a year and a half, two years, [00:15:00] made some really good friends, I've had people that have gotten Nutcracker fixed first via an auto transplant, and then their May-Thurner starts acting up a little bit more. I did the opposite.

I fixed May-Thurner first and then had an auto transplant. So there's no definitive, like yes, top down's the only way to go. So I do wanna mention that to people that are listening. There were other factors for me. I knew getting the stent might make Nutcracker worse, but I was also, I don't have kids, I have a very flexible schedule, I'm a remote professor, I have a lot of autonomy in my job. So I do want to mention that because my decision to get the stent prior to an auto transplant was because I do have flexibility in my life. I understand that there might be some other people out there that are like, well, I can't risk getting the stent and making Nutcracker worse.

Like, I, I need to do a top down. So I just wanna be compassionate in that the how I decided to engage with my body, the order of operations was taken into consideration. And there's other variables for other people that will lead them to make different... [00:16:00]

Jill Brook: I don't, know if you'll know the answer to this, but I don't want listeners to hear this and be afraid that they need an auto transplant. Like this is exceedingly, exceedingly rare. Right? So even you know, even if you do have a vascular compression and that is contributing to, to your POTS, I think the vast majority of those correct are not Nutcracker and are not looking at for anybody who's not sure what kidney autotransplant means, it, it kind of is what it sounds like, right?

Like they remove a kidney and they put it back somewhere else in a different position so that the vein is no longer compressed. So that's obviously about like the most like extreme surgery a person could have to contemplate, but it's, it's quite rare, right?

Simone Erdner: Potentially. I wish I could be speaking in front of a group of gynecologists now to say if, if you via whatever standards they have, but even in my space as a mental performance consultant in [00:17:00] clinical spaces, it's do no harm. And if you're a gynecologist and you are not sending clients to get workup for vascular compressions when they're presenting with seemingly similar issues thinking about the left side, like if somebody's getting chronic, left ovarian cyst, think about the left renal vein.

Like I really wish there was more, there was better interdisciplinary care with IRs partnering with gynecologists and vice versa, so that the, one of the biggest issues I'm also seeing is there's people that are getting hysterectomies that don't need them. And I've never wanted children and so it was a just as much a medical decision to get rid of my uterus as it was just like, well, let's just get this thing taken out.

But there's women that, they're in such pain and so desperate that they do give up the desire to wanna have children and then later find out that they were betrayed because the community didn't even, I mean, my, my medical community now, of the seven people I have on my medical team, only two of them knew what [00:18:00] Nutcracker was when I met them.

It was just so, and again, it's women's health, so we don't really care about women's health that much. So I would actually say, I don't wanna scare people, but there's other ways you can treat Nutcracker as well. I can, I can speak on that. The auto transplant has demonstrated to have the higher success rate, so there is a bit of an order of operations.

So very quickly, if you are listening to this, you have been diagnosed with Nutcracker, this is what I have learned. I just had a, a coffee date yesterday with a fellow Nutcracker patient as well. And my decision to keep my kidney, first of all is because I'm a little bit younger, so I'll turn 36 at the end of this month.

And I just wanted to give myself, like if I was maybe in my fifties, I might have just decided to donate. And there are people that do that. The issue that I've been speaking to some surgeons about is there's two other options. So you can either do the autotransplant or donate your kidney. The other two options are a left renal vein stent or a [00:19:00] transposition where they'll move the renal vein outside of that and just like attach it outside of the compressed area.

There is a bit of a, let me preface by saying this, if you ever have a surgeon that says they have a percentage success rate, don't go to that surgeon. And the reason why is because if you failed your auto transplant with me, I'm not going back to that surgeon to tell them they failed. I'm going to somebody else.

So they're not getting the statistics that actually show them that, that 90%, so if you ever, ever have a surgeon and you're in the vascular compression space and they start throwing around, we have this percentage success rate, that's how, you know, like the ego is, is more there than the empathy, than the person-centered approach.

With that being said, I, the left renal vein transposition and the stent, what I have found out through partnering with some of my surgeons, such as my auto transplant surgeon at University of Western States, Dr. Foley and Dr. Phillips, and speaking to other teams, is that individuals who opt for the stent and the [00:20:00] transposition, there is a higher likelihood of failure happening.

Not always. Sometimes to the point that it could damage your renal vein to where you aren't even a candidate for an auto transplant and you are forced to have to donate. And I've heard a handful of those stories in younger bodies that don't want to necessarily donate. So it's bit sticky on making the decision.

I made the decision to forego the stent in the, the transposition personally because I, at this point before the transplant, I was on my fifth surgery in two years, so I was like, I don't want to even chance there being a failure. I just want something that has the higher success rate.

So I did jump into the dark, murky deep ocean waters of the kidney auto transplant. It was actually a very spiritual, beautiful experience, to be very frank. I, I loved UW Health. They were amazing for me. The whole inpatient [00:21:00] experience was lovely. It absolutely gave me my life back, but I do wanna say that, that I do, again, don't wanna scare, this is rare, but I also do agree it's rarely diagnosed because the medical community's not looking for it. And women are thinking it's gynecology related and it's vascular. They go have these gynecology procedures. So that's another thing is trying to empower individuals to gather as much data as possible, but also bring awareness to some of the data you need to gather is vascular related. And at least going at a minimum, getting on the books for an interventional radiologist, having them look at your CT scans, maybe going the step to do a diagnostic venogram.

And then you at least have that data in your pocket to make a decision on should I move forward with the gynecology procedure or should I move forward with the vascular stuff first? Because again, there's a lot of especially women that are having, I could have probably deleted three to four surgeries off my plate [00:22:00] if this was better known.

Yeah. So I've had seven surgeries total in two years. Eight total in life.

Jill Brook: Wow. Wow.

Simone Erdner: Yeah, and the seven surgeries in two years was three of the first three, if we would've known about vascular compressions, I could have mitigated, condensed those potentially to just one, 'cause I do have, I did have stage four endo, still have it.

The stage is probably a little different, but my uterus was fused to my bladder and, and some other stuff. So the endo was there. So I, I could have taken those three that I had and only had one and then likely saved my uterus and my left ovary. My right ovary has not been very happy that they have to do the job of two people now.

So, you know, that's, that's also been challenging. But as far as relating POTS as well to this, when I, prior to my auto transplant, my POTS was out of [00:23:00] control. But it was really hard to know, I mean, if you think about it, blood is pumping to your organs, but it's not pumping back properly. So from what I've at least gathered when the heart's not getting the same amount of volume back, it's working harder, as we all know in the POTS space. So there is like Dr. Cutchins that I've interacted with online and a couple others. The POTS likely being a residual effect of the vascular compressions themselves. So what's really been wonderful for me, and I'm a data person, is I never actually got, I was informally diagnosed with POTS.

I never went through the tilt table test because I was, I, I refused to do that prior, 'cause I was in, I was like, that is torture to put my body through that while I'm dealing with all this other pain. But I was informally diagnosed with it by a cardiologist. And it was very severe hypotension events, just like the whole nine.

I never passed out but was always on the verge. Mostly was living [00:24:00] my life horizontal up to that point. Have the surgery, have my auto transplant, and then I find I get referred to this electrophysiologist in the Denver area and I go and he agreed. His philosophy is like, I'm not gonna make you do, you've been through so much, the tilt table test is just like, can be horrendous. Let's just, let's do the in person, have you lie down, we'll do your blood pressure, stuff like that. And through that he was like, I don't even need to do the tilt table.

You definitely have POTS. I would say as it stands today, it's leaning on moderate, like mild, but more leaning on the moderate space.

Jill Brook: So this is after your, your surgeries, you still have POTS.

Simone Erdner: Yes, but the, so he says, he's like, hey, let's be really pointed. Let's again do the more the least invasive, increase your water intake, increase your salt. So we did that. Very, you know, went and got me a nice big water bottle. Got me some of the Liquid IVs, got some [00:25:00] salt tablets, but I was also struggling with salt because my appetite at the time was really bad too. So that's also something with people with vascular compressions is you're struggling to even eat. The nauseas there, so you're definitely not getting the salt intake. So I was supplementing at times with salt tablets. But now I just, I'm actually able to eat more so I can get it in my diet. But I am pleased to report that probably two months ago I went back for a follow-up three months. So it was severe POTS prior to the auto transplant, had the auto transplant. Six months later was formally diagnosed, actually went to an electrophysiologist and realized like, okay, I think my body can actually survive a tilt table test. Thankfully I didn't have to do it. And then three months after that, which would've been nine months after the auto transplant, I went back a couple months ago, redid the same test, and he walks in and he's like, your numbers are perfect.

Like this looks like you almost don't have POTS. And he was like, but I'm not gonna tell you, you don't, it just means the intervention you're using is doing its thing. And I [00:26:00] definitely can tell on days I don't get the water intake, which is kind of few and far between. And I'll also, I just had a doctor's appointment today with an IR this morning, and I was diagnosed with vascular insufficiency worse than what I was before in my legs.

So I'm likely gonna move forward with getting the ablation done as long as insurance isn't gonna be all weird about approving that procedure. So I, I come with hope for this audience because my story is very much one of my POTS was informally diagnosed, 'cause I remember telling the doctor, I was like, I really, my body cannot emotionally and physically stay withstand a tilt table test right now.

And I won't, I wouldn't do that to myself. But just based on my symptoms and all of that, we're like, okay, definitely have POTS. I fixed my May-Thurner first. Got significant enhancement with pelvic pain, things like that. I would say it did help my POTS for [00:27:00] a time being, but then my Nutcracker started raging back and it got worse.

So bad POTS leading up to the auto transplant. Have the auto transplant, and I'm, I'm mean, my POTS is still at bay. I'm having some episodes. It was kind of hard to know, is this transplant healing or is it POTS? Then I go get the formal diagnosis of like, yes, you have POTS, this is what we're gonna do.

Thankfully the intervention of just water and salt intake increase helped me. I'm not on any medications. And there's no way we can run the this data to know if there's a correlation between it was the auto transplant that helped mitigate my POTS. I don't, I don't, I would never use the word eliminate.

So we're never gonna be able to make that correlation and say what the effect size is, for example, and if it's a strong relationship with, or a small or a medium. And I will say fixing my vascular compressions has very much helped me. My only next step I need to do, my [00:28:00] legs started going downhill within the last couple months.

I'm definitely, I have my quality of life back. I'm loving my, my life now. But it's getting in the way of me being able to exercise as the athlete I am. So I have noticed as my vascular insufficiency in my legs has gotten a little worse, which is presenting as swelling in the legs at the end of the day, throbbing when I go to bed.

If I do get a wound on my legs, it takes a while to heal. And so I just went and saw that IR this morning. Dr. Peter Stratil at RIA Endovascular in Denver, and he agreed. He was like, yeah, this is, and I've noticed as my legs have gotten worse, my POTS has been acting up a little bit more. Like when I get off the couch, I, I have to be more conscious of like, oh, we are about to get up. You need to go slowly. So I'm still navigating it, but it does not run my life anymore.

Jill Brook: And you're back to playing sports, is what I'm hearing.

Simone Erdner: Not fully. When I say I really want to get, that's what I was telling Dr. Stratil this morning. I was like, listen, I was literally born into this world, an athlete. Like, I don't know how to explain to you that.

And that was such a [00:29:00] big, I'm actually starting ketamine therapy here in Denver, doing six sessions in four weeks to help me process the trauma, and I'll be sharing that series on my, the Nutcracker Syndrome podcast of my experience with that. But with that being said, I, my, I can only do yoga. I've been able to get back into doing yoga. And so that's been a massive win. And the reason why is because after my hysterectomy, I thought everything was great. We were gonna, you know, run into the sunset together. And then I was in a hot yoga class and I couldn't get through 10 minutes without having to lay horizontal the rest of the class.

I just felt like my life was draining out of me, and it technically kind of was. But my POTS was really bad then. So it's been just a couple weeks ago I started doing yoga again and finally being like, oh wow, my body's like back and doing its thing. So I'm slowly getting back into it, walking and yoga.

And I think after we fix my legs, I'll be able to get back into cycling and running.

Jill Brook: Yeah. And seven surgeries in two years. Oh my goodness. I mean, [00:30:00] anybody would be, I assume, having a rough time getting back to athleticism after all that.

Simone Erdner: Yes, it's been, and that's another reason why I'm doing the ketamine therapy. I mean, the, gosh, I already have CPTSD. I was diagnosed before this, and then, I mean, anybody that's been in the medical space, it's just traumatizing. And then it, it's some of the betrayal of the medical system too, because again, to live in a body that's on the cutting edge of medicine, it doesn't feel great when you walk in and they're like, no, I've never heard of that.

And I'm an educator, so I have a album on my phone with all my CT scans, and I'm like, well, let me, I kind of, I, I try to be all, you know, as positive about it. I'm like, well, let me, do you mind if I teach, can I show you what it looks like on a CT scan? And then they get all excited. Or when I go get a CT, I'll tell the people taking, I go, hey, don't be alarmed, but I have two kidneys on the right side of my body.

And they're like, ooh, what? And I, I, any chance I can get to educate, I do. And I try to do it in a fun, like, I'm a weird little medical case, so ask me whatever [00:31:00] questions you want. But as far as POTS goes, it's, I mean, nothing feels weirder than when you're in your body and the autonomic system is breaking down.

I mean, when your body is not operating as it automatically should. So I do think for this audience both those that are dealing with POTS and those even practitioners that are listening is to not downplay, right? Like circling back a smidge to you talking about, well, don't freak out, it's rare.

It's like, actually I don't, I don't want people to freak out, but I do want you to be as comprehensive as you can in gathering data and add that interventional radiologist to your list of people to go see and specifically say, I want to get a workup for May-Thurner and Nutcracker Syndrome. Again, there needs to be symptoms involved too.

But if you're listening to my story and you're like, I actually think I might have this, go ahead and, you know, you can get on the Facebook groups, find those doctors. I'm [00:32:00] really glad I was so aggressive and advocating for myself. Which is why I'm also doing this episode with you all because I think it's important for hopefully as many ears to hear.

I feel like the vascular space is downplayed a lot, but it literally touches every part of your body. It goes through every, every limb. It's connected to every organ. It's, it's your life force. I know in yoga, they talk a lot about your breath is your life force, and I'm kind of giggle a little. I'm like, I don't think anybody in here knows what it feels like for your blood to be toxically, refluxing into your body. Like that's a really weird form of dying while you're alive.

Jill Brook: And I think in your podcast you mentioned that your Mast Cell Activation Syndrome seemed to get better after the renal transplant.

Simone Erdner: Yes. And so a couple other things, I'm currently still in the workup, so we're still on this medical journey. And before I even say what I'm gonna say, I have really good insurance through my employer. So some of me being able to advocate for [00:33:00] myself, insurance and financial has not been a massive barrier for me.

And I want to make sure I say that because there are people listening to this being like, well, good for you. You know, I, we don't have that money to go get two and three opinions. And, and that is so unfortunate. And I just want everybody to know that I voted in such a way as to try to give people better access to medical care.

With that being said, when I started to learning about these comorbidities, when I was diagnosed with Nutcracker and May-Thurner, I remember leaving that appointment and promising myself that I would follow every, every rabbit hole I needed to follow to really figure out the full picture for my body.

So, the only thing I did prior to my auto transplant was see a rheumatologist, 'cause I didn't know if I had hypermobility. And I felt like that was really important to know if I had a formal diagnosis, because EDS can inform how they do the procedure. It's important for the nurses to know from a healing standpoint.

I've seen three rheumatologists and all three have told me I do not have hypermobility. [00:34:00] However, prior to the auto transplant, I was reading about mast cell, couldn't really find a good doctor in the Denver area. I finally have Dr. Jessica Galant-Swafford. She's at National Jewish. Actually just had my me appointment with her. This was December 9th, so about a month ago. She was very thorough. It was very clear that she knew pretty well about MCAS, Mast Cell Activation Syndrome. Prior to my auto transplant, I was breaking out in hives. I was having GI problems. I was having loss of appetite, nausea. Some of those things can go along with mast cell.

Now I go have the auto transplant. My mast cells are seemingly doing a lot better. I then start having GI problems again about five months after my auto transplant. And I'm nervous I could have superior mesenteric artery syndrome, 'cause most people that have Nutcracker also have SMAS.

And that's also another massive surgery. So I go do all the workup for that. And in the, in, in that time, I get an endoscopy done. They do a biopsy. So I asked my surgeon, Dr. Adler, I said, can you do [00:35:00] the CD 117 stain on my small intestine? They do, and it comes back with elevated mast cell. So it shows an elevation of mast cells. But something I found out in meeting with Dr. Galant-Swafford is she said, it's not necessarily the elevated amount, it is what the stain itself looks like. Are the cells uniform? Are they different sizes? How far apart are they? How close together are they? So she's in the process right now of actually getting her hands on that stain because whoever did the writeup on the report, they didn't write actually what the cells looked like.

I thought that was very interesting to learn. Because I was thinking we kinda live in a world of like, oh, this number is high, and she's like, well, that's actually not as indicative as how it behaviorally presents on the stain itself. So I went to her, I did a tryptase test that day. It came back normal.

I just submitted my 24 hour urine. I should get the results back for that. One other thing I'll mention is when I had my out-of-pocket max and deductible met, so I decided to move forward, one of the seven surgeries in two [00:36:00] years was a septoplasty and a turbinate reduction. It was a sinus surgery. And I was having a lot of chronic sinus infections that were like antibiotic resistant. And I was reading research on how mast cell can impact the sinuses. So I had them also do a CD 117 stain of my nasal cavity that came back negative for mast cell. It was another inflammatory marker.

So I'm leaning less toward mast cell now. I am doing cromolyn sodium before I eat, and that has been helping my gut. So there could be some mast cell there, but not something that Dr. Galant-Swafford told me, there's four camps of people. There's like those with actual systemic Mast Cell Activation Syndrome. I'm gonna forget all four, but the three that are coming to mind, there are those that are symptomatic that aren't full systemic but they do have symptoms and so they do the whole cromolyn sodium. And then there's a group of people that are symptomatic, but all your biomarkers come back normal.

And then we do the, the, you know, cromolyn sodium. There's also a, a specific nasal [00:37:00] spray she has me on that's also been helping a lot, that the medications help. So just 'cause the biomarkers don't catch it, doesn't mean, and that's what I love about her. I love that she's not somebody like, well, the biomarkers don't show up so you don't have it.

So that was really interesting to learn. And I could be in that space of, my biomarkers don't show it. I mean, I still gotta wait for the 24 hour urine. But the cromolyn sodium has been seeming to help me when I do remember to, you have to take it 30 minutes before you eat, and I still gotta get into the routine of doing that regularly.

So I'm leaning less toward mast cell as a main issue for me. Now, here's another kicker. I decided in speaking with Dr. Galant-Swafford, she, I was asking her about autoimmune stuff and she's like, well, let me refer you to a rheumatologist. And in my head I was like, I don't need, that'll be my third rheumatologist.

I know I don't have hypermobility. But I remember promising myself when I got diagnosed with Nutcracker that I would always follow through with any doctor's appointment. So I reluctantly went and I see Dr. Allsop, [00:38:00] Dr. Vivianne Allsop, and I also love her. She's at National Jewish as well. She's very thorough, just like Dr. Galant-Swafford. And she's like, you know what, let's just do blood work. And at that point, I hadn't had any rheumatologist recommend blood work. And I go, all of my markers come back negative, other than my ANA, which is my anti-nuclear antagonist, came back pretty elevated. Something's attacking the nucleus in my cells. There's something going on. And then my CCP came back weak positive. It's a CCP, it's an IgG and an IgA concentration. Because it's a weak positive, it's leaning toward a potential rheumatoid arthritis diagnosis. However, she sent me in for additional lab work. One of the labs, it's an ANCA, ANCA for vasculitis, if you've ever, have you heard of that before? ANCA stands for, it's an anti neutrophil cytoplasmic antibody. I'm [00:39:00] like so obsessively checking my test results thing right now because if that comes back, that could, there are different types of what is known as AAV, so ANCA associated vasculitis. And as well versed as I am in the vascular compression space, autoimmune is still so much for me to learn. It's when the immune system attacks and inflames small to medium blood vessels, reducing blood flow and potentially damaging organs like kidneys, lungs, and sinuses. And since I'm still having sinus problems after my septoplasty and turbinate reduction, that's what led us to do this.

So there's different types of AAV. I am not even gonna try to scratch the surface there. So I, even though, again, I was formerly diagnosed with POTS, I have that under control. I'm doing the water, I'm doing the salt. I do think the vascular compressions also were a massive part in helping mitigate the, the absolutely severe detrimental effects of the POTS I had prior.

[00:40:00] There's also the, you know, the mast cell component within the vascular compression space. Now, Jill, I think I'm curious too, because this is obviously a predominant POTS podcast. Have you seen just POTS specific people that also are looking at comorbidities such as MCAS, histamine intolerance, and autoimmune as well?

Jill Brook: Yeah. We've had guests on who estimate that up to 70% of POTS patients have MCAS. Others would say it's much, much lower. But it's definitely, I mean, yeah, we actually have a subtype of episode called Mast Cell Matters 'cause it's so relevant to this community.

Simone Erdner: And thank you for sharing that because I've been so in my vascular compression space, right? So POTS felt so residual to me, where for some people's bodies, POTS is the kind of primary issue, so the lens in which they're looking at the world through is a POTS related lens.

The lens that I'm looking through the world through is a vascular compression related lens. And ever since going to my rheumatologist last week, and I, again, both of these doctors at [00:41:00] National Jewish have been phenomenal, educated, very thorough. And what I'm trying to do now is really understand my body so I can give my body what it needs and also try to mitigate longer term effects.

So like, as an example, if I never went, and if I never were to follow through that, that appointment with Dr. Allsop, I wouldn't have had this blood work done. I wouldn't even know, like, let's say this ANCA associated vasculitis does come back positive, there are very detrimental effects to having that.

And if I were to have left that untreated, and I very much do come from a family that I was raised with the narrative of like, you only go to a doctor if your leg got ripped off. You know? And so I'm really leaning against my socially constructed self, which is that like, no, I'm gonna go to these doctor's appointments. And I, right now I'm not, again, this could, my, my [00:42:00] CCP came back as a weak positive. My ANA came back as a one, the ratio is one to 1,280, so 1200 extra than what the, the high end is. And those, those results alone don't necessarily diagnose an autoimmune disease from what, Dr. Allsop, I believe I remember her telling me it's, there could be people that have, I think she said 15 to 20% can have the numbers I have and not ever develop an autoimmune or ever be symptomatic.

So there's, that's another thing too I had to learn, and I definitely wanna educate people on, it's just because you do get abnormal results back doesn't necessarily mean there's something bad and, but it is hard to see, you look at the test results and it says abnormal, and you're like, oh no. Especially when you're in a rare medical space and with POTS patients, it's also, I mean, one of the things I've been so vascular minded that thankfully my, I residually almost got my POTS mitigated through the vascular space.

But I'm on [00:43:00] the POTS Facebook pages, and I so resonate with the gaslighting that comes from surgeons that are just like, oh, you think you have POTS? Like they don't actually think it's this real thing. And, and so the same thing with like autoimmune and exactly why I want to be able to, like, what am I actually looking at data wise?

What is the data that my body is giving me so that I can also know how to properly advocate for myself, but I can also educate other people, 'cause the farther down this rabbit hole I go, the more information I get. So I'm waiting on my, my mast cell diagnosis. Whether that does come or doesn't, on my 24 hour urine I wanna do a follow up episode on Nutcracker Syndrome podcast to be able to like say, hey, here's an update, this is what I've done. So that people know who they should go see. And then the same thing with the autoimmune is follow this rabbit hole. So I can do another episode on the Nutcracker Syndrome podcast. I'm basically a case study of one, and even though medically there's no, no two human bodies are gonna have the [00:44:00] same medical experience.

No two human bodies are gonna have the exact same numerical makeup from a data perspective. So the Nutcracker Syndrome podcast very much started out as a like, hey, this is a case study of one. I'm gonna just share my story. It's not medical advice. And maybe somebody can just learn through the journey I went on with the hope of mitigating potential surgeries that they don't need, with the hope of getting them, helping them know how they can better advocate to get answers sooner.

Because it's, I mean, I work in the sport and performance psychology space. I used to work in professional sports. I've worked with elite athletes, and so I had a lot of coping tools in my toolbox on how to navigate. I teach the psychology of injury and rehabilitation, that's my expertise. And it really this last three years really, really opened my eyes to so much we don't know psychologically on how much injury and illness can deteriorate you emotionally and mentally to the [00:45:00] point that there's kind of a funny story. My most recent surgery was a hernia repair surgery that came about from my auto transplant.

No fault of the surgeons, you just have a higher susceptibility to create a hernia with any abdominal surgery. So I go have the hernia surgery. If I put all eight surgeries together I've had in my life and times that by 20, that's how bad the pain was. It was excruciating. And I went in thinking this'll be a spa day.

It's not gonna be as bad as my transplant. So I go in, I have my meditation apps on my phone, I have my journal. I have my whole pre-performance routine, performance routine in place for how I'm gonna handle it. And I'm in so much pain. And I'm like, okay, pain management scripts. Pain management scripts.

This is what I would tell a client to do. And I'm in the hospital with the phone, like on my chest, listening to it and I, I threw my phone across the room. But it taught me, it really helped me expand because our textbooks in the psychology of injury, the research that's out there is pretty novice. But at the time when I was teaching [00:46:00] it, and I have been injured, I've been an injured athlete before, I had a broken foot and went through the whole nine yards there. But ever since COVID happened, the research is also pointing to a, a very large increase with long COVID and POTS being associated with that.

So one of the things right now in my field that I'm advocating for is that we need to switch our language to not just sport injury and rehabilitation. It needs to be sport injury, illness, and rehabilitation recovery. Because a lot of times athletes could potentially have an underlying autoimmune disease, underlying POTS, underlying Ehlers-Danlos, and they don't actually know it yet.

And then they get into, they break their foot, they sprain their ankle, tear their ACL, whatever it is, they go have surgery, and then they're wondering why they're having such a hard time with rehabilitation. And rehabilitation's very much like let's mechanically get you back. And that's why I want the concept of illness and recovery to also, because we're living in an age now post COVID, where if we as practitioners in the mental [00:47:00] performance consulting space, do not consider illness along injury, that doesn't mean that injury can't just be injury. Doesn't mean illness is always associated with it. But if we don't change our language, then that means we're not widening the periphery, widening the conceptual lens of a practitioner to consider how my illness be here, what could be something that I could refer a client for or talk about or normalize.

So very much this three years has been awful, awful, awful. And it has also very much changed who I'm as a practitioner. It's changed the trajectory of the research I do as a professor. I mean, even came down to me creating a complete center in new business. The COPE Center, which is short for the Center for Optimal Psychological Education and Injury Rehabilitation, and twofold for us to help injured, ill and rehabilitating recovering athletes.

But right now, mostly [00:48:00] to educate practitioners in the medical field on the psychological side of injury, illness, rehabilitation, recovery. I'm currently in the process of creating a intake form for practitioners working on the psychological side of injury, illness, and rehabilitation recovery.

This entire journey as absolutely horrid as it was, was very much a phoenix moment for me and completely put me on a whole new path. I don't even know how many hours I work. But that's the key is it's like I have my life back so I can actually work again. Like I, I'm now renting an office and I have a dual screen and I'm like back to myself and it's so wonderful.

But I like literally wake up and I'm like crunching at the bit to go work on this research. And I like wake up and Kyle's like, what are we doing today? I am like, I think I'm gonna go to the office and it's a Saturday. You know? So it's just completely awakened something in me that I saw a gap and I was like, this needs to be filled.

And when you go through the medical traumas that those that listen to this, the resilience you also build through it is so [00:49:00] magnificent that once you get to a space of being able to operate in daily life, like I am, I'm, I'm, so my imposter syndrome isn't really there anymore. I'm just like, listen, what I just survived, yeah, sure, I have some doubts here and there, but it's not quite like what it was before. So I'm just like full steam ahead and making sure I'm managing of course. And my lifestyle has changed in how I like wake up and get my meds now and, and making sure I'm getting water, setting alarms on my phone.

But from a space of self-love, I think the most loving thing you can do for yourself is go make the doctor's appointment, go to the doctor's appointment, prepare for the doctor's appointment. So that's what self-love currently looks like for me. And now also adding yoga and, and my massages. I love my massages.

Jill Brook: Awesome, awesome. And you know, what's striking me is, is it's, it's so wonderful that you went through all this hell, [00:50:00] and you feel like you've gotten your life back and you're making it mean something to help others. But like, we didn't even scratch the surface. Like listening to your podcast, there's so much more to every single part of the story.

And I, I would just encourage people again to listen to that if they think they might have Nutcracker, because you really go into so much depth about how to prepare yourself psychologically for things, what the tests are like, what the procedures are like, considerations for making sure you have the best chance of getting insurance coverage, how to choose doctors, how to think about tests. I mean, there's, there's so much that I have to admit, so as, as someone, I don't think that I have Nutcracker. I do think I have some venous issues, and listening to your podcast made me realize like, oh boy, okay, to do this, to do this in a way that gives it the highest chance for success, you know, this has to become a part-time job, if not a full-time job.

Simone Erdner: Oh, yes.

Jill Brook: [00:51:00] And you know, we already know that medical error is a very real, very big thing. So you always have to be on the lookout for that. But just because it's such an unknown area, and like you said, only two of your seven doctors even knew what Nutcracker was when you started, you really as the patient cannot be passive.

You cannot just put yourself in the hands of somebody that you perceive to be the one who's gonna take care of you or put yourself in the hands of the medical system and hope everything comes out okay. And you really go deep into so many of those considerations that I think it's amazing and wonderful, but it's intimidating. I gotta admit that even I, listening to it, it was like, oh man, am I up for that?

You really had to rise to the occasion to do a lot of work. But your podcast is so wonderful for people to have so that they know what those things are to look at. And I, I commend you because you didn't have somebody like that to tell you ahead of time.

[00:52:00] You had to figure it out. But you've done an incredibly thorough job and I think your podcast is just so valuable for anybody in that situation.

Simone Erdner: Yeah. Thank you very much. I, one of the things I'm doing now is I just started a caretaker series and I have interviewed two people, two couples thus far, just to speak about them navigating it together, but trying to highlight the caretaker's point of view. It sounds kind of counterintuitive, like how can we as the patient support the caretaker, but they've been really powerful on, like, one of the things that came up was power of attorney and actually how this one couple didn't choose the husband, which was the primary caretaker as the power of attorney.

They chose a family friend that was a doctor. And I didn't even think, like some of those things I'm learning through this caretaker series that you, the biggest thing when you're leading into a transplant is that you're trying to mitigate, you're trying to be so proactive that when you have the surgery you have thought about everything. And of course you can't, there's gonna be things that happen after that you're like, [00:53:00] there's no way I would've known that. But the caretaker series has really started bringing that stuff up on how can we make sure, maybe it's an org chart or something. And so those have been really great.

So this, I just launched season two of the Nutcracker Syndrome podcast and it started with the caretaker series. I'm gonna have the ketamine series when I go through that myself to just share with people if that's a healing modality that they want to do. I'm kind of scared, but I think it'll be great.

Another thing I wanna do too is it's very heavily female oriented now, but there are males that get Nutcracker Syndrome, and trying to bring on some of those guests just so that people feel included. Bringing on some more doctors as well. And if anybody is out there and you have a job on medical advocacy on like getting, I saw a job somebody posted and it was like a, it's at Wash U in St. Louis, Missouri. And I was like, if this was a remote job or somewhere where I actually wanted to live. It was a medical engagement, basically almost like an education advocacy of bringing awareness to [00:54:00] these things and also doing interdisciplinary work of trying to get surgeons connected with other surgeons.

If anybody's listening to this, let me know if there's jobs out there for that, because I think that, that, that really would be a passion of mine is trying to reorient the medical system a little bit to care better for those of us that are in this space.

Jill Brook: Yeah. Yeah. Amen.

Simone Erdner: Yeah.

Jill Brook: So do you have any final words for people? We will link to your podcast, the Nutcracker Syndrome podcast, and we will link to the COPE center that you're creating so people can find those in the show notes. Any final word for people? Even me, I don't think I have Nutcracker, but I get, I get, I get tense thinking about what a, what a, an difficult experience this must be for anybody.

Simone Erdner: It is. I, I went and when I got diagnosed, I went into major shock for two days and then on day three I woke up and I was like, I don't know why I'm crying so much, and Kyle was like, you [00:55:00] just were told you have to relocate your kidney. And I was like, oh, yeah, I guess I did go into shock. I mean, I went into like mega shock.

So it is a lot. I, I would end by saying this, I understand it can be scary to get the diagnosis and so most people from a psychological perspective look to avoid going, to avoid getting the diagnosis. But still go. I mean, look at it from a place of self-love. And you would, I, from my perspective, I would rather have it ruled out.

And so being thorough, and especially if you're somebody that has POTS and you're curious if it is, I mean, the podcast itself is the Nutcracker Syndrome podcast. But again, I've had May-Thurner, there's many people that have Nutcracker also have May-Thurner. Usually if you have one vascular compression, you have multiple, which kind of sucks.

I mean, there are some people out there that just had May-Thurner. But I would definitely, I know it's scary, but another reason why I started the podcast is so you didn't feel so alone. I've had some people DM me and be like, you're like my virtual NCS bestie. And I'm like, I love that.

So you're not alone. There's the Facebook [00:56:00] groups out there. I, one thing I was gonna share is when I started doing the caretaker series, something that came from that is creating more formal social support groups that aren't just Facebook related. And one that's for patients, one that are for just caretakers, so that caretakers have their safe space to be able to go and bitch if they want to about whatever it is.

So, but I, I reached out to a couple, 'cause I'm getting to the point where I need to start delegating a bit and you know, have, have more hands on. So that is in the works for us to create a more formal social support group, that there will be a vetting process such as a quick application that's less than just the Facebook to safeguard who's in those groups.

I really want to collaborate with individuals, mental health practitioners, surgeons to be able to come in and do education materials in those support groups. Maybe even do group mental health stuff if people want to. So, I'm just spitballing right now. We don't have anything formalized, but that is something that I hope, I really, really care to [00:57:00] facilitate a space for people to feel supported through this. I just felt like I was on an island. And so my hope with the work that I do moving forward, little by little helps people feel less like you just said. I think about Nutcracker and I'm like, oh no. There's also an IR in Denver that's working to try to get it to where they can come to this institution and people can get a workup for all vascular compressions at one time instead of having to fly all over the country for four different diagnoses.

So there's some of those things that are in the works that are really giving a lot of hope and it's gonna take time and there's some of our bodies that are gonna get caught in the crosshairs of not being able to benefit from that. There's a episode on the Nutcracker Syndrome podcast with Sherry Spain, who was almost like her cohort of individuals back in 20 16 were like the first generation of those going through auto transplants. And I almost feel like I'm a part of the second generation. I don't really know where the, it's gray lines separating these generations. But my hope is with [00:58:00] generation three and four and five and six and so on, that the work that we do, and as much as I would love for my body to be in generation seven or eight, but this is where I'm at and I just hope to help those in the future.

Jill Brook: Oh, well that's so wonderful. Dr. Simone Erdner, thank you for sharing your story and your insights. Thank you for helping to make it easier for the people that come after you. You really are an incredible example of somebody going through hell and you know, making it look possible to come out much better afterwards. So thanks a million further.

Simone Erdner: Yeah, it was so nice to, to like chat with you Jill. Thank you for having me on. And if anybody that's listening wants to chat more obviously the Nutcracker Syndrome podcast, the COPE Center, but you can get me on socials too at my handle is @doc_serdner, so S-E-R-D-N-E-R. So you can message me there. I have a lot of people in my message request that I'll respond to.[00:59:00]

Jill Brook: Oh, fantastic. Okay. We'll put that in the show notes also. Okay listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening, remember you're not alone, and please join us again soon.