Jill Brook: [00:00:00] Hello, fellow POTS patients, and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with an update with Elli, who we've spoken with before, but who has all kinds of new news since we last talked to her. Elli, thank you for being here.

Elli: So excited to be here.

Jill Brook: So last time we spoke to you, you had just been diagnosed with POTS and that had been its own adventure and now it's been another three, four years. And how's life? How are things going?

Elli: Life has been a rollercoaster. I just listened to the episode that I was on this morning and was like, wow, that girl is so happy and positive. Like she has so much zest for life, which I love. But it was like, I don't think she really knew what she was getting into, you know? So at the time when I last saw you, I was in school in Oregon.

Since then I have [00:01:00] moved back home to Utah to be closer to family so I can get some more medical support, you know. I've since been diagnosed with EDS and MCAS and I just recently had MALS surgery.

Jill Brook: Okay, so let's just remind everybody what MALS is or people who maybe are where you were at last time you were on the podcast. I think everybody probably knows what EDS and MCAS are 'cause we talk about those so much. MALS, remind us of the basics.

Elli: Yeah. Okay. Most, I hate to say like normal people, but like the average person, you have a ligament called the median arcuate ligament, and it normally sits above one of your main blood vessels in your belly called the celiac artery. So MALS stands for median arcuate ligament syndrome. And people who have MALS, that ligament presses down too hard on your celiac artery and the nerves around it as well.

So that kind of [00:02:00] reduces the blood flow in your stomach and can kind of irritate your nerves and stuff. So really it's just like for me, every time I ate, I was just really in like excruciating pain.

Jill Brook: Oh, okay, so for, for everybody now who's like, wait a second, I'm in pain when I eat, can you be any more specific? Right after eating, sharp pain, dull pain, like how specific can you get for people who are wondering if they need to worry about this?

Elli: Yeah, no, I totally get that. And I've, I've grown up with stomach issues my whole life. And I was like, this is not like a normal, like stomach ache, you know? So the pain for me was like, very high up, more like kind of by your diaphragm, less like lower stomach pain. And it was really, anytime I ate anything, it was like right after just kind of like someone's stabbing you in your diaphragm, really?

Jill Brook: Wait, so anything, it didn't matter. So how much would you need to eat to make it happen?

Elli: Like a little snack even, [00:03:00] that would happen. I tried so many things. You know, countless doctors, you know, giving you, oh, here's this miracle thing that's gonna help you. So I did like the liquid diet. I did small meals. I did, you know, all kinds of FODMAP stuff and, and nothing, nothing helped.

Jill Brook: Wow. And how long did you live with that?

Elli: Let's see, I think it was over three years. But like the more I do think about it, since I like MALS you're born with. So I was born with this condition, but three years ago it kind of, for some reason seemed to kind of flare up and then like the, the real pain kind of came in. But the more I think about it, it was like I've never really eaten normally my whole life.

And I think it had some impact on me. And then when the pain kind of started was when it like really kind of hit the fan.

Jill Brook: And, and then how did that tie in with getting the MCAS [00:04:00] diagnosis and the EDS diagnosis? Like were they related at all or were they totally separate?

Elli: When I was living in Oregon, this is when the pain started happening. And I lost like 15 pounds and was just like really not doing well. So I ended up moving back home to Utah to be closer to family, and closer to medical institution that kind of works with more complicated people. And they were the people that diagnosed me with EDS and MCAS. I kind of always thought I had EDS, so it never was really like going down the route of getting a diagnosis, 'cause I don't ever have like severe dislocations, but definitely like super hyper mobile and stuff. And they thought that that might be kind of an aspect of the stomach issues. So that's where the EDS diagnosis came in. And then I've always had terrible allergies and food allergies as well. And so that's kinda where the MCAS came in, doing a scope and [00:05:00] stuff, looking at MCAS levels and stuff.

Jill Brook: Okay. And so what ultimately did you try for the MALS and what helped or didn't help? You said you tried a bunch of dietary things, a liquid diet and such and that didn't do anything. And I know you recently had a surgery, so like was there anything else like that led up to the surgery that you tried first?

Elli: So I've seen so many GI doctors. Some of them told me to just try peppermint. Some of 'em said that I was just gonna have to kind of live with it. And because MALS is such kind of like just how you're like built, that there's really not a lot you can do with it.

But I think the biggest problem for me was there weren't any doctors who even knew what MALS was or knew how to treat it. So really, once I found that doctor who was aware of what MALS was, the only treatment was to like surgically go in and get it treated.[00:06:00]

Jill Brook: Got it. Okay, so tell us more about that. What does the surgery entail?

Elli: Yeah. So the surgery was like three and a half hours. So basically they go in and they just remove that median arcuate ligament. I was lucky that I was able to do it laparoscopically, so I only have six incisions. But then the surgeon I saw is kind of like the specialist in this and does it a little differently that he cuts out all the nerves kind of surrounding it.

And they went in there and my tissue was like crazy inflamed and my nerves were really unhappy and stuff. So they cut all of that out. I just remember waking up from surgery and asking my mom like, was it MALS? Like, was that really the problem? And just like bawling my eyes out, like maybe this is actually the answer, so.

Jill Brook: Aw, because you had been through so many years of so much pain and trying to find answers.

Elli: Yeah, and I was really a unique [00:07:00] case that a lot of my testing wasn't super conclusive. I had to go through a CT scan and an ultrasound and both of them kind of came back like, yeah, your numbers aren't great, but it's also not like definitive that this is the answer. But the main way that I was diagnosed was I did a nerve block into that celiac artery.

And I came back from that and had the biggest meal of my life and it was like the best 24 hours. And so after that were like, let's do the surgery, and it's probably like a 90% chance that it'll work. So I think that's why waking up for surgery, it was such like a relief that it was like, oh my gosh, I'm not crazy, you know?

Jill Brook: Oh yes, and I think so many of us can relate to that relief of feeling.

Elli: Yeah.

Jill Brook: Not crazy. And I guess in a way it was kind of good news to hear that your nerves were inflamed because theoretically there's all that potential to feel better [00:08:00] if you get rid of them. Okay. So before we hear the big reveal of, do you feel better, I'm, I'm just curious, so do you just not need that part of your body? When you say you only had six inch incisions, that sounds like a lot to me. It sounds like a pretty major surgery.

Elli: Some people who like aren't like as up on like the MALS procedure, they just get it like cut. So I'm just, I guess when I say minimal, like I'm lucky that they didn't slice my whole stomach open. But yes, six. Recovery was pretty terrible.

Jill Brook: Oh, so you had full general anesthesia, is that correct?

Elli: Yes.

Jill Brook: A three and a half hour surgery. Sounds like a pretty substantial surgery. I mean, I have no idea how long the average one lasts, but...

Elli: Yeah, it was wasn't great and I spent like a day and a half in the hospital and then it was pretty intensive, just kind of like pain management at home once I got there.

Jill Brook: Yeah. [00:09:00] So I mean, how many layers did they have to go through to reach the median arcuate ligament?

Elli: I'm not exactly sure. I know it was pretty deep because my back hurt more than my stomach did. And everyone was like, well, they're so deep in there that like it's kind of common for your back to be in a lot of pain. But I don't know the exact like where exactly, but it's deep in there.

Jill Brook: And then can I also ask, since EDS patients and MCAS patients famously are maybe a little bit more fragile when it comes to surgeries, was that any concern?

Elli: Yeah, it was. I've had surgeries before that like I knew it wasn't gonna be great. I just don't do very well with anesthesia, so the nausea was really a concern. And then I've [00:10:00] definitely felt like on the EDS side, like my body is just kind of like extra loosey goosey, you know, 'cause I haven't really been able to walk around as much.

And you know, there's at times that I'm like, oh, I can kind of tell like things aren't in the right place and I'm not able to like, I know people are gonna understand what I'm saying with like, if you, sometimes you need to like crack your back to get it like back in the right spots, you know? And with the surgery, like I wasn't really able to do that.

So there was I think a lot of like extra pain with that, but nothing that it was gonna be like dangerous or like outweigh the benefits of getting surgery.

Jill Brook: Okay. Okay, so you said you spent another day and a half in the hospital. Is that correct?

Elli: Yes.

Jill Brook: Okay. And then what?

Elli: And then I came home and laid in a bed for like three weeks and was in so much pain. My whole stomach like blew up like a balloon 'cause it was just so much like, kind of like trauma into my [00:11:00] stomach. And just slowly got better. They say that it takes three to six months to know if it really worked and to be in like full, full recovery.

So there's definitely days that are like worse than others, but as like someone with a chronic illness, like that's normal either way. But yeah, slowly getting there.

Jill Brook: Okay, and so remind us how long it's been since you had the surgery.

Elli: I had surgery seven weeks ago.

Jill Brook: Okay. And how are you feeling now? Like how does it feel to eat?

Elli: Yeah, there's definitely times like I'll eat and I'll be like, I wasn't in pain. Like I think I'm totally fine. But at the same time it's kind of hard to tell because I'm still in like recovery pain. But there are definitely days where I'm like, I am totally fine. Like, I don't, I don't feel it at all.

And I think like sometimes I'm like trying to, like, that's hard for my brain to figure out, you know? So I think I'm, I'm like anticipating being in pain and then I'm [00:12:00] like not. So, so far it's like a great feeling. But I know there are some days where I'll like eat something and be like, oh, that, that doesn't feel great, but nothing like the pain that I was in.

Jill Brook: Okay. And so I, I realize this is the question that I should ask, probably a doctor, but maybe, you know, 'cause I'm sure you've paid attention to this. Like, can you just live without that ligament? What was that ligament holding together? Are you like floppy somewhere now that used to be held together or what?

Elli: That was like what I was thinking as well. I think, I mean obviously it must be totally okay because I don't have it anymore, but I don't really know what the function was at all, but yeah.

Jill Brook: Okay, well, I guess maybe our bodies are just over-designed and overbuilt and you can lose a few things and be okay. I mean, I guess we already know that about things like people lose their appendix and their tonsils all the time and they still get by okay. Wow, okay, so are you happy that you did [00:13:00] it?

Elli: Yes, I am, I'm so happy that I did it. Like regardless if it, this was the answer or not, which I'm like 99% sure this was the answer. Living in that much pain the last three years of my life, and this was the only thing that was like maybe would be the answer. I'm so glad I did it.

Jill Brook: Oh good. Okay. And so what are the plans now? Do you still have like some, I don't know, recovery to do, some PT to do or what? What's next for you?

Elli: I just got back with my PT for my POTS, and she just kind of knows about all my issues. So I just started getting back with her, getting back on trying to get some more cardiovascular work to kind of help my POTS symptoms. So, you know, slowly starting to do the recumbent bike. I've slowly started to do some stretches and stuff, trying to release like all that scar tissue and stuff. [00:14:00] So slowly getting there. I am, I'm still really, really exhausted, but I'm also trying to get my master's degree right now. So it's like just a lot.

Jill Brook: Oh, good for you. Wow. Do you have any tips or advice for other people who might be considering MALS surgery or thinking about it?

Elli: I think the biggest thing, like if you think that it's MALS, is find a good doctor that you know is reputable and know you can trust, and that is very few and far between with MALS. I think if you are trying to get diagnosed with anything that you have to keep advocating for yourself and you have to keep trying to find a doctor who will listen.

It's so easy in the medical community to just be like, I'm so sick of this. Like, what do you mean I have to see [00:15:00] another doctor who's not gonna listen to me, you know? But just to keep going and keep trying to find a doctor. And regards to like MALS, specifically if you're considering surgery, like obviously outweigh the pros and cons to it.

Like it's not, for me, it was such a hard decision because it's not this like simple, quick surgery. But if, you know your quality of life has dropped to such a level because of this, like, will that cost outweigh the benefit of it, you know? So I mean, for me it totally did. But it just has to be a personal choice and has to be what you think it should be.

I know I would ask my family and friends, like all the time be like, should I do this, should I not do this? And it really just came, came down to like my decision, like what I wanted it to be.

Jill Brook: Oh, well, good for you. I am so glad that it's looking really promising, so far. I know that everybody's grateful for the information that you're sharing, and [00:16:00] they're pulling for you to have a really full recovery and to just feel better than ever. Thank you, Elli, for sharing everything with us.

Elli: Thank you.

Jill Brook: Okay, everybody. 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.