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- [00:09]
Host 1
Hi, how are you?
- [00:11]
Host 2
You know, I'm doing good. I'm doing good. This episode resonated a lot with me because she talked a lot about this feeling of hope after getting an answer. And that is where I'm at right now. So I felt like I was hearing somebody else's story, which is entirely different than mine, but. But feeling those same emotions at the same time, which was kind of wild.
- [00:31]
Host 1
Yeah, I'd say it's unusual that we have a case where there's basically a cure, you know? Yeah, yeah, like a. Yeah, like an amazing happy ending.
- [00:44]
Host 2
It's also not great because she lived with us for a very, very long time when there was a cure. With that, let's jump into what is a pretty wild episode. But before we do, Aaron, do you want to remind them of a few things?
- [01:02]
Host 1
Well, please, if you have a story that you would like to share with our audience, please send it to Stories themedical Detectives podcast dot com. I don't know if you guys could hear, but I feel like I've been like, I'm in the middle of Times Square this entire episode. All of the sirens have been going off.
- [01:22]
Host 2
And that's. And that's what we want you to do, is to put this message on a billboard. Tell your friends, tell your mom, tell your mom's friend Jean to listen to the podcast, rate the podcast, if you love it, and give us a follow on the social medias, because we created this to create a community, and the only way that works is with you. So with that, you ready to jump on in?
- [01:45]
Host 1
Let's do it.
- [01:46]
Shel
Do it.
- [01:51]
Host 1
Hi, Shel. Welcome to the Medical Detectives. So thankful you can join us today.
- [01:56]
Shel
Oh, thank you so much for having me.
- [01:57]
Host 1
And, Shel, I want to start by asking because. So I think most listeners know that I know a little bit about the medical conditions of the guests before they come on. And one of probably the saddest and most frustrating parts of researching for your case is that these symptoms started when you were very young. So can you please start us off with what it was like for you as a child?
- [02:27]
Shel
Yeah, well, I started getting headaches when I was around five. And when you're that young, I don't think you really realize that anything's wrong. When things start that early, I think you don't really have a sense of what's normal and what's not. And truly, I didn't until many, many years later. But it kind of was always written off as just. I was kind of sensitive. I was an emotional kid. My Brother had some medical stuff and his was obvious and diagnosed early. And so there was always just an explainable thing, like I was going through something and things were hectic and everything just kind of got ignored. Not intentionally, but you know, I'd say I had a headache and it was like, okay, here's, here's a Tylenol, I guess.
- [03:09]
Host 2
Drink some water, take it out.
- [03:11]
Shel
Exactly, like tired and, and you know, when you're a kid, you just, you keep going. Like it, it takes a lot. You know, I have four kids, it takes a lot to knock em down, even when they're sick and obviously sick. So I think that had a lot to do with it just kind of going by the wayside.
- [03:31]
Host 2
Was it hard to be a sibling of someone who did have a more physical illness? Did you ever feel like you were overlooked because of that? Did you recognize that as a child?
- [03:42]
Shel
Honestly, a little bit. Because yeah, he had asthma. He had really bad asthma and he needed foot surgery when he was very young because of a congenital condition he had. And he's totally fine, was totally fine after that and everything. But yeah, he was kind of like the sick one.
- [03:56]
Host 1
And can you describe what the headaches felt like or do you remember when you were that little, what did a headache feel like for you?
- [04:05]
Shel
Intense pressure. And that's how all these headaches were all along. It was just pressure where my head was pressurized kind of everywhere, but like temples, behind the eyes, it was like my whole head was just being squeezed was the best way to describe it. And then, you know, there'd be times that it was way more intense than others where it would look like a migraine, where it would just knock me out and I'd have to sleep and I'd have to lay down and be in a dark room. But it was mostly just a feeling of intense pressure.
- [04:36]
Host 1
And did you ever have to like miss school or like not do activities because of it?
- [04:42]
Shel
Not really. Again, I didn't know how significant it was and how serious it was because it just was my normal. So I think after like a couple times of it happening, it just, it felt like, why would I keep complaining about it or why would I keep mentioning it? Like, I'm okay. There was definitely times when I was a little older, toward middle school, where they started to manifest more like a panic attack because there was more of a nausea to it. I'd get into a sweat and I'd feel like I was gonna throw up. So when things like that would happen, I would definitely like. I remember being at I think it was a volleyball or basketball game and having to go outside. And I remember standing by a trash can, just feeling like I'm gonna be sick. And it takes a lot for me to throw up, even now. But I remember standing there shaking, like everything hurt, and I just felt sick. And then it would go away, and it would fade, and it would come back another time, but it looked like a panic attack.
- [05:48]
Host 2
Did you think it was a panic attack? Did you just think that that's.
- [05:51]
Shel
Or when I got older. When I got older, and it was kind of diagnosed as that. That I could look back and be like, oh, yeah, that. That makes sense. That makes sense. I guess, you know, they're telling me it wasn't physical, so it must not have been. It must have just been me having anxiety, and it would also bring on anxiety.
- [06:12]
Host 2
Oh, of course.
- [06:13]
Shel
You know, like, feeling like that and feeling like I was in control of it. I thought I was just a really, really anxious person, and I was a pretty anxious person, to be honest, so it kind of made sense. And the headaches were so constant. I kind of just thought, everyone must feel like this, and I'm just not handling it as well as everyone else does. Surely everyone feels this way, and I'm just being dramatic. So I think that was another layer of why I didn't really say anything. Why didn't. I mean, I did say things sometimes, but again, it was like, when it was so extreme that I couldn't hide it. I couldn't hide it from anybody is when my mom would know, or I was at a friend's house, and I got so upset that I couldn't be there without my friends knowing that I was having a hard time. Is when I would call my mom. That was the times when she would know. But again, I think it just looked to her like I was just being shy or homesick or sensitive.
- [07:17]
Host 2
Mm.
- [07:17]
Shel
Like I'm just okay. I just. I have anxiety. Like, that's what this is. I guess I just. I have anxiety because I'd gone to the doctor, and it was just kind of like, okay, she's got migraines. And they'd put me on the migraine med, and I didn't like it. The side effects were yucky. And so I don't really remember taking migraine medication that long, but I remember having Advil a lot. Excedrin, Tylenol. And it was constant. I was taking them all day, every day for I don't even know how many years, especially as I was older. Constant, constant, constant.
- [07:52]
Host 1
What Types of doctors were you seeing growing up?
- [07:57]
Shel
Mostly just my pediatrician. And again, when you're telling your mom, like, oh, my head hurts, and I'm sure that she said something to the doctor. We, you know, we had exams every year. Well, checks. And I was a pretty. Other than like having tonsil issues, which resolved when I was, you know, I had my tonsils out as later in life. But that's kind of like the thing that I was in the doctor for more soften was strep throat. So I think everyone really just thought that I was just being sensitive.
- [08:28]
Host 2
You know, I. I grew up in a home with a sick sibling. And I get that because whenever you have something going on, it. It's hard because everybody set aside so much time to deal with the. The sibling that is chronically ill. And it never crosses their mind that there could be two of you. Yeah. And it's weird that that happens, but.
- [08:48]
Shel
And it wasn't like so serious that it was preventing me from living. And again, I didn't realize how bad it was because that's just how it was. It was just my baseline was crappy.
- [08:58]
Host 2
Yep.
- [08:59]
Shel
So it was only noticeable when it was so bad that I was like, I gotta lay down, I gotta sleep, or whatever.
- [09:07]
Host 1
So at what point did it become that now there is something in addition to just the headache?
- [09:16]
Shel
So this incident that I remember really well, I was in sixth grade, it was Easter Sunday, and we were at brunch with our family, and my head just started hurting out of the blue really bad. Like, I couldn't keep my eyes open. I was laying over a couple chairs at the table in the restaurant. And it was so bad. I remember thinking I wanted to get out of my body. It was so bad. And so my mom, you know, it's Easter Sunday. She didn't have any Tylenol on her, so she went to, I don't know, a drugstore. Something was closed. We had to go to another one. She ran in, she came out, she gave me the Tylenol. I started to eat it, the chewable. And immediately I threw open the car door and just vomited out everywhere. And then the craziest thing was my headache just. It was like a switch flipped. And I was like, my headache's gone. My headache's gone. Completely gone. And then it was gone the rest of the day. Like, I was a little tired, but it just. That was that. And we all thought it was weird, but I always remembered thinking that was bizarre. And it kind of set me off on this anxiety about that happening again. And anxiety about throwing up. Total phobia of throwing up after that, because it just. The way I didn't feel nauseous. Like, it just. I just threw up out of the blue. And then my headache was gone. It was a very strange thing. And nobody else was sick. It wasn't anything I ate. My stomach didn't feel sick. It was just insane pressure, insane pain, and then gone. And again, I thought it was anxiety, and that felt embarrassing, like, because it felt like something that I should have been able to control.
- [11:00]
Host 2
Mm.
- [11:01]
Shel
So it definitely. I mean, I didn't talk to my parents about it.
- [11:05]
Host 2
I.
- [11:05]
Shel
My mom knew. My mom knew how often this was happening. Like, she would only know when it got so bad that I was willing to be like, I have to go outside. Like, I've just. I'm sick. You know? And so I think she just thought I was, like, had a bug or, you know, was coming down with something.
- [11:22]
Host 2
You hid this from them?
- [11:24]
Shel
Yeah.
- [11:26]
Host 2
And. And why.
- [11:27]
Shel
I think it felt like if I admitted it, that it would get worse, because, again, I thought. I thought I was in control of it. I thought it was something that my mind should have been able to control. I mean, also, this is. I'm 40. I'm almost 41. It was the 90s. We didn't really talk a lot about mental health. It wasn't really something that I knew about. I didn't know anybody who went to therapy. I didn't know anybody who got help for anxiety. Like, it just. It felt like that's what was going on, but I didn't know that was something I could get help for. I thought that it was just something that I needed to deal with internally.
- [12:05]
Host 1
So at this point, you're attributing these physical urges and symptoms to a mental deficiency?
- [12:13]
Shel
Yes. Yes. When I was a kid, I just remember feeling weak. Like, it just felt like, why couldn't I just be more brave? Why couldn't I just be more outgoing? Yeah.
- [12:24]
Host 1
So now you have had years of headaches, nausea, vomiting spells, feelings of panic, anxiety. What happens next?
- [12:37]
Shel
So my father passed away really suddenly when I was 17. And for the first time, my mom was like, you need to go to a therapist because my dad had died. So she's like, you need help. Your dad just died so suddenly, and obviously you need help. And I remember being at the therapist and thinking, like, my dad dying isn't. I mean, obviously, it was like a horrible, traumatic, PTSD inducing experience. But at the time, I remember thinking all these things that I'm Here talking about and complaining about and worried about have been going on for so much longer. So it was kind of just a catalyst to me getting to the therapist, getting to, yeah, a doctor. You know, I was being put on anxiety meds and Prozac for the first time in my life. But the panic attacks, the anxiety, it didn't go away. I was still feeling it. I was still feeling anxious. I was still feeling like the nausea spells and the crappiness all the time. And I just kept going through the motions. And once I got to college, I was definitely drinking, which I didn't really do before. I just kind of. I didn't go off the rails. It wasn't that bad, but there was definitely some self medicating going on. And I also had a doctor. You know, this was prior to legislation or different laws. My doctor basically would give me a prescription for Xanax for a month and I'd go back a week later and be like, that wasn't enough. And so I just get more. And so I was just taking Xanax like it was skittles for a while and realized that was happening. And I was able to stop because it scared me that that was going on. But everything kind of ramped up and I was suddenly on my own and trying to just navigate being an adult after this whole thing happened. So again, there was explainable reasons for things to be getting worse, because now the nausea and headaches were anxiety caused by the death of my dad.
- [14:52]
Host 1
Did the Xanax help?
- [14:54]
Shel
Yes and no. The best way I could describe it, it felt like I could still feel everything. I just didn't care as much. Everything still felt crappy. I still had headaches. I still got the panic attack, nausea stuff, but it didn't consume me. I was able to ride through it. So it helped, but sounds like it.
- [15:16]
Host 1
Helped manage the symptoms but not prevent them or decrease their frequency.
- [15:22]
Shel
Yes, yes.
- [15:24]
Host 2
It kind of sounds like it allowed you to check out. It's almost like you can see all of this was happening, but it was like, almost like it wasn't you.
- [15:32]
Shel
Is that the way I'm saying it? I was taking that through my sophomore year of college, so it did help, but I didn't notice that it actually, like I said, it didn't actually help. Like it just kind of made me not care as much.
- [15:43]
Host 1
I mean, I know, like it's in pop culture right now and popular with White Lotus and the Lorazepam and all that, but that, like Parker, we are that generation, right, of women that grew up with that crutch that was prescribed by our doctors.
- [16:02]
Shel
Yeah, over and over and over I would go to my doctors with physical symptoms and that's what I would come home with was a new prescription for a new antidepressant. So I was in college for three years. I was nowhere close to graduating because I had failed classes and I wasn't going to class and I was. I just felt like crap. And again, it all just seemed mental health related or my dad related, like, oh, she's just having a hard time. So I stopped college after three years. I ended up going back and finishing, but got a full time job as a nanny. And there was definitely a few times that there would be some sort of incident where I couldn't go to work because I was feeling really off. And I remember my boss being like, were you out drinking last night? And I was like, no, I swear I wasn't. And like, I love my bosses, love them so much. But I remember thinking like, oh, they just think I'm hungover. I never missed work and I felt so sick. And I remember thinking, is this just in my head what's going on? Because again, then I'd sleep or whatever and I'd feel fine the next day. Yeah, everything would be fine. So it was understandable that he could think that, like, oh, you just like, it's fine, Shell, it's fine. But like, is that what's going on? I'm like, no, I don't know what's going on. The worst days, it was like I couldn't open my eyes. It almost felt like I was going to pass out if I stood up, but my heart would race. Like it was impossible for me to do anything. And luckily that was more rare, especially when I was a nanny and things like that. But there was definitely a few times that I'm like, I cannot, I can't function today. There's no, no functioning in me at all. Whereas other days, like, I'd still feel crappy, but I'd be able to push through and I'd be able to be okay and talk myself down. So that went on and I'd go see doctors and it was already getting to the point where I was viewing me going to the doctor as a waste of my time. I would go and they would just tell me, you have anxiety, you have depression, everything looks fine, your blood works fine, you're good, you've got migraines. Oh, well, you know, eat better, drink more water, start exercising.
- [18:29]
Host 1
And you never saw a neurologist or.
- [18:32]
Shel
A migraine specialist, never sent me to one, never ordered a scan, Nothing. Nothing. Yeah. And then I met my husband when I was like 22. 21, 22 ish. Ended up getting pregnant with my first son when I was 25. He was born when I was 26. Everything went fine. Obviously I was no longer drinking. I was, I was a full time nanny and so I was like pretty active. I had gained a little weight. Another factor was I was super thin my whole life, like concerningly thin to where I couldn't gain weight. And so when I did start to gain weight, I was super happy about it. It felt good. I finally was fitting clothes normally and pregnancy was fine. Everything was great. I had an epidural with my oldest, which now I know was a not a good idea. And yeah, things got worse. More headaches, the back pain and the sciatica kind of started. Toes going numb. But again, I was a new mom. I was tired, I was breastfeeding. There was just so many things that it could have been.
- [19:47]
Host 2
Yeah.
- [19:48]
Shel
And then I got pregnant right away with my second son. So it was back to back. Luckily with my second son, no drugs, no epidural, easy, uncomplicated pregnancy and delivery. I definitely did start getting sciatica during both my pregnancies. Much more so with my second. Just like shooting pain down my legs. My toes and my fingers would go numb pretty easily. My big toe on my left foot, I couldn't really feel. It was just numb all the time. And I'd mention it and they just feel like, oh, that's weird. Like, okay, you know, it must be like you got a pinched nerve or it's just pregnancy in your hands. Yeah, yeah. Hands and feet numb. Like I would sit like this. If I sat like this for like, I don't know, a minute, my, my hand would be numb. It was constant. And then the pressure headaches accelerated. I couldn't really laugh, yell, cry, bend over quickly, exercise, anything. So I always kind of had a low lying headache. But now it was almost like everything would kind of go black. Like it would hurt so bad that I couldn't see and then it would fade. But I always had this low lying headache. But then these like intense pressure headaches. When anything was like I'd get excited about anything or I would. Anything, anything that could have caused pressure. I guess it was like the most intense pain. I stopped watching funny stuff. I'd have to really be cautious if I yelled or I can't understand any nerve.
- [21:23]
Host 1
Any internal medicine or primary care doctor or obgyn. Who would feel comfortable enough thinking, this woman is having intense pain, laughing. To not think that you needed someone.
- [21:35]
Shel
Else to investigate this, and then these. So those intense things that started happening when I was young too, and they were rare, but they became more increased. So I definitely had mentioned it to my doctors, but I thought, okay, this is just something that happens. Other people must have this too. I didn't think much of it until it got so much worse. After I had my kids, it just got so much worse that it was noticeable all the time. I remember driving with my mom, and I don't. I don't even know why. I don't know why I had this, but we had a balloon, and I was blowing up a balloon, and I remember being like, oh, I can't do that again. I can't ever blow up a balloon again. Like, that was scary. So those things would happen, but again, then it would just fade away. And I wouldn't think about it until the next time it happened. And I'd think, well, surely if this is something horrible, I'd know by now because it's been going on for so long. But then I started to talk to my doctors more about it because it just. It was kind of taking over my life. I just feeling horrible all the time. All the time.
- [22:41]
Host 1
And how were you able to manage taking care of a newborn and a toddler?
- [22:45]
Shel
Not well. Not well. Of course. I was diagnosed with postpartum depression. Yeah, of course it was bad. I mean, it definitely. I will say after my second son, that was definitely postpartum depression for sure that was going on. But I would I have had it if I didn't have all these symptoms going on? I don't know. Probably not, because guess what, I had two more kids and didn't have postpartum depression after them. So I don't know.
- [23:16]
Host 2
I mean, were you depressed because you had a child and your hormones change? Are you depressed that you couldn't live?
- [23:23]
Shel
Yeah.
- [23:23]
Host 2
I mean, how did it feel to not be able to laugh, to not be able to have, like, literally any emotional response?
- [23:28]
Shel
I felt crazy. I felt 100% crazy.
- [23:31]
Host 2
How did your partner react to that?
- [23:33]
Shel
He just wanted me to get help at one point. My second son was one and a half. He must have been like two right around when he was turning two. I went into pretty significant outpatient treatment where I was there five mornings a week from nine to noon for, I think it was six weeks of just intensive therapy. There was this moment that I remember we were driving in my car. I can't remember what we were doing. We were coming home from, like, the pool, I think, with the two boys and my husband, and we were driving, and my husband just was like, shell, I don't know how much longer we can do this. How much longer can we do this? And then he made a comment of, you know, I don't know what else to do after this. Like, do we need to get a divorce? Do we need to not be together anymore? Because what are we doing here? Like, you're miserable all the time. They deserve a happier mom. And I remember that it went through my head and I just thought, whatever. And then it was like this jolt of like, that's not a normal thought. That's not what you really think. You really do care. You care. Like, why are you thinking that? And that's what prompted the outpatient therapy. Because I knew that wasn't normal, that wasn't me. That's not what I wanted. And it definitely helped. It definitely helped my mood, my mental well being, but it didn't stop me from feeling like crap. And at that point, I had gained a significant amount of weight. I was probably around 225, which was heavier than I ever was with my pregnancies. And so of course, when I started asking for help, it was just like, well, you're fat, you know, you're overweight and you're depressed. So here's some information about weight loss and here's a new antidepressant. And half the time I would just throw away the prescription and just try to gather the strength to find a new doctor or, I don't know, I was starting to feel crazy. Every appointment that I'd go to, I would be sitting in the waiting room and I'd be gearing up how to talk in a way that that made me seem credible. I would talk through it in my head of like, okay, stay calm. Just mention the physical stuff. Don't mention the emotion stuff. I remember every appointment trying to behave in a way that would make them see me as a sane person as much as I could. Because I knew they just looked at me as someone who was just an overwhelmed mom, or, you know, oh, she's got history of depression. Oh, she's been to therapy. Oh, she's got anxiety. I knew that's what they thought of me. And it was really hard to work around that and still try to get help, knowing that it didn't matter really what I said, that that's what they'd see first. There was one doctor that I went to. I Had been seeing her for a few months. And originally she did the blood work, she checked my thyroid, checked everything, and was like, you, you know, you just need to lose weight. And so I was like, okay, I'm gonna get serious. I'm gonna lose weight. I lost 40 pounds. It was very hard. I did it. And I remember going back and being like, I still like this. My toe is still numb. I'm still getting these headaches. I just tired all the time. I don't feel good all the time. And she was like, well, let's just wait and see. Just wait and see. And I'm like, I remember thinking, wait and see what? I did what you told me to do. You said that I'd feel better if I weighed less and I weigh less and I don't feel better. So I left that doctor they've been.
- [27:25]
Host 2
Waiting and seeing a long time. That's all I'm gonna say.
- [27:28]
Shel
Yeah.
- [27:29]
Host 2
So with all this going on, what do you think that took from you in your life because. Because you couldn't connect. Right?
- [27:38]
Shel
I mean, I still, when I. When there's things that should send me to the doctor now, I still second guess myself. I still think maybe I'm just making this up. Maybe it's not that serious. Maybe I'm just being a hypochondriac. And then there's this other part of me that's like, well, you thought that before and something very serious was going on. So it's just, it's still, there's still. I mean, when you've, when you've, when you live so long with people telling you it's all in your head, and then you discover it wasn't all in your head. Like, I don't trust my own, my own feelings. I still don't really know what normal is. And what. It's a very. It's confusing still. It's still confusing. It took a lot.
- [28:23]
Host 1
I mentioned this in the TED talk that I gave last week about misdiagnosis. But the misdiagnosis robs you of your confidence, right?
- [28:34]
Shel
A hundred percent.
- [28:35]
Host 1
It robs you of your ability to trust your own instincts about your body.
- [28:43]
Shel
Yep. And the thing that really was the big catalyst into me getting help was my son. When he was 2, my second son, he had Kawasaki disease, which is a very commonly misdiagnosed disease condition. It's acute. There's like a 10 day window that you gotta get in and get treatment or else you can have significant heart damage, even death.
- [29:06]
Host 2
What is Kawasaki disease?
- [29:07]
Shel
It's a Vascular disease. It's basically like a misfiring of your immune system, but it mimics a lot of regular childhoodnesses like scarlet fever or hand, foot, mouth strep. So he was very sick. And I took him to the doctor because I knew he was very sick. And they were like, he's just got a virus. And went to the doctor multiple times in those first few days. It was my 30th birthday and I'm sitting there in the ER for 11 hours waiting to be seen with my very sick baby. And they told me he was, oh, it's just a virus. He'll probably get worse before he gets better. Don't worry about it. You know, call us if x, Y and Z occur. And he didn't. He got worse. And it was very scary. And I remember taking him back in and being like, I know something's wrong with him. This is very serious. This is not my kid. I don't care if you have to poke him a million times. Something's wrong. And thank God we are at a hospital where like, the leading specialist in the world for Kawasaki disease happened to be. And he got treatment fast. Everything worked out. You know, that was the catalyst for me to be like, wait a minute. These people don't always know what they're talking about. And I knew something was wrong with that baby, and it was. And he could have died if I didn't flip out and get him there and push. And that for me was like, okay, no one else is going to do this for me, and these kids need me. So we got to figure this out. And sometimes taking care of yourself first is the best thing you can do for your kid. And up until then, I don't think I really understood that. I don't think it registered until it got so bad that it was like, okay, it's now or never. You got to figure something out because they deserve a better mom. They deserve a mom who's not feeling crappy all the time and who's grumpy all the time and who's irritated all the time. But I remember thinking, I brought this. This kid to the hospital who was so clearly sick, and they were still telling me he was okay. And then the specialist later was like, he was very sick when he got here. And they called the disease that moms diagnosed because it's moms who are like this. This is wrong. If I could do that and doctors could still look at that kid and think he was okay, then imagine what they thought of me when I was walking in you know, able bodied, for all intents and purposes. And just like, I have headaches and I. This happens. And I'm sure they're just like, look at you. You're. You need to lose some weight. You're overwhelmed with motherhood. You just need to take care of yourself, basically. But I definitely felt like it was something more significant and I was right. And so that's when I really started going from doctor to doctor to doctor. I think I had, like, four different primary care doctors in just as many years. And they do the whole thing of, like, you know, seeming very interested, seeming concerned, doing the blood work, doing all the tests, and then being like, you're fine, everything's fine. And it got to a point when my husband and I were talking and I'm just crying and I'm like, I just. I feel like crap all the time. Like, I can't do anything. I know that I should be feeling better than this, but I don't know what's going on. Everyone says I'm fine. I don't know what to do anymore. And he basically said, okay, let's make a plan. Go to the doctor, insist on seeing a neurologist and getting scans, proving to you that there's nothing wrong. Like, I just needed proof. And I remember saying, I just want you to prove to me that there's nothing going on in my brain, that there's nothing going on with my neurological self. And if you can prove that to me, then I will go and I will go on whatever weight loss journey you want me to go on. I will take the antidepressants, I'll go to therapy again. I'll do it all. I'll admit that it's in my head. So I went to the neurologist, got an MRI. She immediately called me within 24 hours. So I knew, like, oh, something's. Something is up. And they were originally thinking, like, maybe I had an aneurysm or maybe I had, you know, something like that. So she said, everything looks fine. There was an incidental finding that you have something called Chiari malformation. And I was like, incidental. And immediately I thought, well, that makes all the sense in the world. And I knew what Chiari was because my cousin had it, and my cousin had a similar situation. She was, I mean, living on a pain pump and didn't have much of a life. Went through a whole bunch of mis. I mean, hers was even worse than mine. Had surgery, suddenly has this full, amazing life. So I knew exactly like when they said, oh, you have this. And I was like, incidental? You're telling me this is incidental? I'm like, oh, maybe you can see a surgeon, but, you know, you should be fine. So I went to a couple of brain surgeons and found a doctor at UCLA where he and his. There's another man who were both into my surgery who are the heads of the Chiari Clinic at ucla. And this is what they do. This is pretty much all they do. And met with him. Obviously, my husband was with me because he drove up to LA a couple hours away, and he was the first doctor that made me feel like everything was going to be like he had a solution. He believed me. It was the first time that I was like, okay, okay, this is real. I'm not making it up. And he thinks he can help me. And he was wonderful, wonderful, wonderful. When he saw my scans, he came and he sat down and he put papers down. He was like, well, I'm actually surprised to see that you can walk. Based on your scans. I'm surprised to see that you are walking the way that your spinal fluid is, is. I just. It's amazing that you can walk. And if you had waited longer, it's possible you would have lost the ability to walk, which made me feel a little scared, obviously, but it made me feel so vindicated. I was like, oh, my gosh, this is real. This was really causing a scene. Serious physical issue. Everything.
- [35:49]
Host 2
What is this? What is Kari Malformation?
- [35:53]
Shel
Is that.
- [35:53]
Host 2
Did I say that right?
- [35:55]
Shel
Yeah, Kyari malformation. Basically, my cerebellum was pushed down into my brain stem and blocking flow of spinal fluid. So they ended up doing MRIs down my whole back and found that I had something called syrinx, which was where your spinal fluid is not flowing correctly. And so it kind of like juts out and describe it as a cyst, but it's basically, my spinal fluid was not flowing. It was just totally incidental. My brain was just, like, shoved down into my spinal column.
- [36:28]
Host 1
So to give you a little more detail kind of on the anatomy, right, you have your skull. Inside your skull is your brain. There are multiple parts to your brain. You have the cerebrum, which is what most people think of the brain. Then you have the cerebellum, which is in the back of your head at the bottom, and then the brain stem and those three parts of the brain converge at the base of your skull, which is like, if you go, like, straight back through your nose at what's called the foramen magnum, and that is the Large hole, the exit where your brain, the brain stem, form your spinal cord. Right. So there's like, this is the junction, and the cerebrum and the cerebellum are supposed to live on top of the foramen magnum, and the spinal cord lives below. Well, what happens in Chiari malformation is that for whatever reason, the anatomy of the foramen magnum or the anatomy of the skull is off. And that usually cerebellum herniates through that hole and then starts either compressing onto your brain stem or your spinal cord. And then also there is a free flow of fluid, which is the csf, the cerebrospinal fluid that goes around like in a circle. Right. So it's what bathes your brain and your spinal cord, because your brain and your spinal cord are part of the central nervous system. They're all connected one thing. And so they're all bathed in that same fluid. So in her case, she had, most likely when she was born, a genetic defect where her cerebellum was herniating through her foramen magnum, which caused this backup of CSF fluid. And again, you think of all of the. There's too much pressure inside. So everything that you were just describing aligns perfectly with the symptoms of Chiari malformation. And I will tell you that the fact that you had a family member who, you know, had something similar.
- [38:40]
Shel
The crazy thing, though, it was my cousin by adoption, so we aren't.
- [38:44]
Host 1
Okay, so not.
- [38:46]
Shel
But yeah, just FYI.
- [38:47]
Host 1
But yes, but the. The other point that I was going to bring up is that. And again, I'm. The point is not for me to be diagnosing people on this show, but when you said that you were 5 foot 9 and £100, that is a very common body type for people who have these, what's called connective tissue disorders. But if you never know that there could possibly be this connection, then you would never be on the lookout for, like, oh, what are the other things that are connected to these conditions?
- [39:20]
Shel
I do think that they're finding more genetic connection with it, because even when I was diagnosed 2018, they were still saying, like, oh, it's not genetic, it's just something that happens. But now I think they're finding more genetic connections. And I think that a huge issue is that doctors think they know everything sometimes and aren't admitting that new things are being found every day. And there's possibility everywhere. And just to think like, well, that's. That's not a thing prevents diagnosis.
- [39:49]
Host 1
And I've mentioned this before multiple times on the podcast. But this was, you know, like, the only quote I remember from medical school. But the eyes only see what the mind knows. And so if your nutrition does not know what Kawasaki's disease is, your kid is never going to get diagnosed with Kawasaki disease. And this is the hardest part of being misdiagnosed, is you don't even know what you're chasing. So I really do see this as the best use case of integrating AI for diagnostic purposes is to give us that really broad differential diagnosis.
- [40:25]
Shel
Yeah.
- [40:25]
Host 1
And then the. The physician's job is to say, okay, let's prove this, yes or no. And there are some diagnoses that are what we call diagnosis of exclusion.
- [40:37]
Shel
Yes.
- [40:38]
Host 1
We ruled everything out. So it's anxiety. Right. There's no physical blood test to say you have anxiety, but for your entire life, to everyone dismiss you saying that you had anxiety when they never checked to see that you had a brain tumor.
- [40:54]
Shel
Yeah. Yeah.
- [40:56]
Host 2
I don't mean to laugh, but it is silly. It is silly that no one looked. So many years of headaches and nobody was like, maybe we should see what's going on up there.
- [41:05]
Shel
Yeah. And not only that, but I feel like people who have physical ailments are probably more likely to have anxiety. You feel out of control with your own body. Like, it's a horrible, horrible feeling to feel like it doesn't matter what you do, your body is working against you. And they just. I think they all just thought I was crazy. And frankly, I believed I was crazy at that point. And that's what I'll blame back to.
- [41:28]
Host 2
Is, is you, very early in this episode, presented yourself as someone who is anxious and mentally needy. And I don't think that is true. I think you learned that through your medical journey. And that makes me sound.
- [41:44]
Shel
Yeah, Yeah.
- [41:45]
Host 1
I think you internalized it.
- [41:47]
Host 2
Yeah.
- [41:48]
Host 1
When so many people say it, then it must be true.
- [41:51]
Host 2
Yeah.
- [41:51]
Shel
Yeah.
- [41:52]
Host 1
Right. And when people who are in positions of power say it, your.
- [41:56]
Shel
Your doctors are telling you. Yeah.
- [41:58]
Host 1
Your parents.
- [41:59]
Host 2
I hope that someday, now that you have this diagnosis and have been treated and. And as time goes on, that you can take that perception of yourself away, because I don't think it's fair.
- [42:12]
Shel
It's gotten better, for sure. But again, there's this aspect of, like, when. When I do have something physical going on, there's definitely an aspect of, like, okay, how serious is this? Is this actually something serious that I need to be going for? Or am I just freaking out because the last time there was something going on, it was Something really serious. Like, it could just be something not so serious. But the gauge for that is so off, and I don't know that's something that will ever be right for me ever, ever. I don't know that I'll ever have a correct gauge of what's too much and what's not enough.
- [42:53]
Host 2
I think as women, we get taught not to trust our bodies.
- [42:56]
Shel
Yeah.
- [42:57]
Host 2
And so I think what you're describing is what a lot of women who have either gone through their own diagnosis journey or are still going through diagnosis journey feel, which is.
- [43:08]
Shel
Yeah.
- [43:09]
Host 2
At one point in time, you didn't feel good, and you could recognize you didn't feel good and something was wrong.
- [43:14]
Shel
Yeah.
- [43:15]
Host 2
But we're told so many times to ignore it, to overlook it, that you lost that fundamental connection with your body. And I think that we get taught to ignore that. And I think sometimes not only does it get put on anxiety, I think it also gets put on things like. Like hormones, menstruation, pregnancy, menopause. These are all moments in our life where women are encouraged to really disconnect from their body because, you know, we know that women go a little crazy during this time. So anything you're feeling isn't accurate.
- [43:51]
Shel
It's just that. Yeah.
- [43:53]
Host 2
Yeah. And I think the. The. The biggest gift we can give our kids for people raising kids today is to help them not lose that. Because people who maintain that connection are the best advocates for themselves because they can tell without that fear that you have.
- [44:08]
Shel
Yes. Yeah, definitely.
- [44:13]
Host 1
And so after you have the brain surgery to, I'm assuming, decompress and open up the ferment. Magnum, what did you feel?
- [44:25]
Shel
I mean, let's be fair. Brain surgery is no walk in the park. The recovery was bad. It was really painful. But there was immediate signs that things had worked. Immediate. My husband will say that, like, I don't really remember the first, like, 36 hours in recovery in the ICU, they had to keep me alert enough to do neuro checks every. I don't even know what it was. Half an hour, 20 minutes or so, which was awful. I just wanted them to knock me out, like, just let me sleep through this, please. But they're doing neuro checks, and I believe my mom and my husband were there, and, you know, they're checking, can you feel this? What's your name? Blah, blah, blah, blah. And they're feeling my toes, and they said, can you feel this? And I was like, yes. And they kept moving on. My mom goes, wait, whoa, whoa, stop. What did she just say? And she's like, she could feel this toe. And my mom is like, she hasn't been able to feel that toe for years. And then, you know, I mean, all I said for, like, two days was, it hurts. It hurts. I don't remember anything other than significant pain, but I remember falling asleep like this in the ICU bed and waking up, and I remember saying, how long have I been asleep? And they said, I think, like, an hour. And I was like, I can feel my hand. It was crazy. I remember thinking, normally, if I had fallen asleep like that for a few minutes, I would have woken up, and it would have been so painful. And just pins and needles, and so that was like, okay, it worked. The main thing was it just felt like someone had released a valve in my head all of a sudden. I mean, I still. I was in a lot of pain. I still had a headache because I just had brain surgery. But it wasn't the pressure. The pressure was gone.
- [46:14]
Host 2
You had hope is what you had.
- [46:16]
Shel
Oh, it was. It was like, okay, it worked. It worked. I'm gonna be fine. I'm gonna get through this initial recovery, but I'm gonna be fine. It's. It's still crazy to me that I don't really need to take Advil anymore. When I get a headache now, it's because something is wrong, acutely wrong. Like, I didn't. Oh, I didn't drink water all day, or I'm getting sick, or, you know, I have the flu. Like, there's a reason for my headaches now. Whereas before, it was just. I did not realize I literally was living with a headache every single day of my life, every moment of every day. I didn't even know. I didn't know until it was gone, which was the most insane thing ever.
- [47:04]
Host 1
How did that affect your personal life?
- [47:07]
Shel
For a little while, there was a period of time when there was a lot of anger and resentment that I had gone so long, long feeling so bad. And there could have been a fix earlier that was crappy, but everything got a little easier. Everything got a little easier. Not perfect. You know, there's still. I mean, there's. I feel like I'm gonna have. These muscles are gonna be tight for my entire life, because I spent my entire life tensed like that. Yeah. So I still do have some residual stuff, but nothing like it was at all, which is huge. I just felt hopeful. I just felt like so many more things were possible, and I was so much more capable than I had previously thought. It's still kind of hard to Believe that all that happened and that I'm on the other side of it.
- [48:03]
Host 2
How do you think your life would have been if you hadn't had the surgery? If they hadn't found it out, how different do you think it would have been?
- [48:09]
Shel
Oh, God. I mean, I don't know how I could have kept living like that. I had hit a wall. I don't know. I don't know how much longer I could have withstood that without some sort of relief. I can't imagine it. I can't imagine still going on like that right now. I mean, I have two children now that I could not have had before I had the surgery. I had my two kids before and then my two kids after, and there's no way I could have had four kids before I had this surgery. There's no way. I mean, kids were off the table after I had my second going through all that. There was no way. So that's probably the biggest thing. I always wanted to be a mom. I always wanted a lot of kids. I mean, four kids is. It's a lot. It's not, not crazy a lot, but, you know, it's a lot. And I. There's no way I could not have had more kids. There's no way. So that's huge, huge, huge, huge that I was able to do that.
- [49:19]
Host 1
What would you do now if your 5 year old came up to you and said they had a headache?
- [49:26]
Shel
I would march into the neurologist and make them give me an mri. And actually that did happen. My. My second son was having headaches and I did. And they. And you know what? And they listened to me. They listened to me after that because they're like, okay, she knows what's going on. And luckily everything was okay with his brain. He needed glasses. But I definitely take their issues seriously because nobody else is going to. Who else is going to.
- [49:59]
Host 1
Do you feel like you are able at this point to delineate what is a physical symptom and what is a mental health symptom?
- [50:12]
Shel
Usually. Yes, usually. But there's definitely still that voice in the back of my head of like, what if this is like before and it's something bad and I have to talk myself down every now and then. And even, you know, with my husband, like, there was. I was having a headache and I wasn't. There was a couple days and I was just kind of off. And he's like, you don't. Do you think your brain slipped? Like, should we go back? I'm like, I think I'M okay. I don't think it's that.
- [50:48]
Host 1
Well, Shel, I want to thank you so much for coming on and sharing your story. And, you know, I think the reason why this really tugged at me was because you've been having these symptoms since you were 5 years old. And what you said in the beginning, where you didn't even know what was that. That was not normal.
- [51:08]
Shel
Right.
- [51:09]
Host 1
That. That was always your normal, and what a sad and painful existence that must have been for you. And so by you sharing your story to even help one person, one mom, you know, maybe put that in the back of her head if she has her little one come up to them and say that, yeah. You know, they have a headache.
- [51:31]
Shel
Yeah. Well, yeah. And, you know, and the other thing, to be fair, we. Even if I had gotten an MRI when I was 12, the technology wasn't there, where they might have even noticed it, where it might have even picked it up, because it's such a small. I mean, it's a significant issue, but it's such a small difference. It was like. I think mine was 1.5 millimeters. I mean, it's. It's such a small difference that can make such a huge impact. And I don't even think they had the imaging available to see it back in 1996 or whatever. So there was definitely a lot of, like. I'm sure. I'm sure my mom felt some guilt once all this came about, but I don't think there was even a way to know that's what's going on when I was. When things were ramping up. So.
- [52:29]
Host 2
Yeah.
- [52:30]
Shel
Yeah.
- [52:32]
Host 2
And I think that's part of this, too, is like, you can walk in to try to get a diagnosis, and the technology can just not be there to give you one.
- [52:42]
Shel
Right.
- [52:42]
Host 2
And then in literally a year, it could be.
- [52:45]
Shel
Right. Right.
- [52:47]
Host 2
And to a lot of people who are potentially listening or will listen to this, this episode, I think it's a really good example of why you have to continually advocate for yourself.
- [52:57]
Shel
Yes.
- [52:58]
Host 2
Even if you don't get an answer right away, because it's just might be that the technology is not there for you to have an answer yet.
- [53:04]
Shel
Yes. Yeah.
- [53:06]
Host 2
Again, there's a lot we don't know.
- [53:08]
Shel
A lot we don't know.
- [53:10]
Host 1
Well, thank you so much, Shell. We really appreciate you joining us.
- [53:13]
Shel
Thank you.
- [53:14]
Host 2
Thank you so much. One thing that kept floating around in my head during this episode is why do we have such completely unrelenting faith in doctors? And I'm not. And I'm not saying that we shouldn't trust doctors. But where did we believe that doctors were like all knowing, like God. Right. Because in, in my mind, before I started my own medical journey, you went to a doctor and they knew every single thing. They knew every single thing. So if they told you you didn't have something, then obviously you didn't have it because they knew every single thing. Thing. Where does that come from? Why do we believe that?
- [53:57]
Host 1
Well, I think part of it is that that is just how the system evolved. And part of that is, you know, also when our parents were children, Right. You didn't question the leaders of government. Right. You always thought the president was doing the right thing or your elected officials were doing the right thing by you. And, and similar to the field of medicine, as authority figures, we trust that they have our best interests, that they have done all of the research and schooling. And I think that we've talked about this before that before 40 years ago, when there were only a few hundred different diagnoses, that was probably the case where the position did know and was the expert in this smaller subset of possibilities. But as the research has exponentially grown, it just outpaced the capacity for doctors to become all knowing while our perception had not changed. So even though we are in an age of hyperspecialization and we may just be very, very focused on a handful of diagnoses, the patients still believed that we know everything. And I think it's not that it's a failing of the doctors, but it's really a call to use new technology, which I talked about in the episode, to be able to supplement us and just be able to use tools to give the patient the best shot at getting the right diagnosis.
- [55:40]
Host 2
I think too, it's a really good example of the fact that you have to advocate for yourself. You have to get to that doctor that uses the right tools. You have to get to that doctor that understands your condition. If you don't feel like it's whatever you're told it is, then keep pushing. I also wonder in some extent if some of our belief in this kind of perception that doctors have. Every answer comes from the fact that the TV we consume around medical shows, they always get to some super specific, super rare diagnosis in like a 45 minute period, which as many people on this podcast can probably show you is not the reality. So even the media we have that mirrors medicine is unrealistic.
- [56:26]
Host 1
And in terms of one thing that I think was another point to this episode was Shel had these problems for as long as she could possibly remember, right. Since she was 5 years old. And for her, she didn't even realize that that was really abnormal, right. She thought that that was just part of being a kid. And when the 13 year old girl has unrelenting abdominal pain right around her period and she thinks that's normal, right? All the girls my age are going through this and I think that's a really hard thing to understand. You know, what is abnormal if I don't even know what normal is to begin with. And again, it's something where because she pretty much her whole life, people dismissed her symptoms, she really lost that confidence in being able to trust her, her body. And even after getting a diagnosis, she spoke about how she still doesn't really have that trusting instinct of what is wrong. So I think it's helpful to at least if your child is coming up to you with symptoms, acknowledge that they're having the symptoms, right? Not to say, oh, don't worry about it or it's not that bad. Say, I hear you telling me you're having pain, I hear you telling me it hurts. These are at the baseline at least reaffirm for the child that yes, what I'm saying is true.
- [58:08]
Host 2
Maybe additionally with these longer term symptoms, track it, right? Like we tried this medication, it didn't work because I think sometimes you do all of those things but you don't keep like a visual record of it. So a lot gets lost as far as how long it's gone on, how many incidents there's been. If you're seeing these things form a start of a hat, a start of a pattern. Having that information then becomes a tool you can use down the line to advocate for yourself or for your child. So I love documentation, I'm a data nerd, but I feel like as a parent you can document for your child, but then you can also document for yourself. So then you can say like, no, this isn't just a once in a while thing. This happens, you know, four times a week. It usually lasts for this long. This is what I feel also it forces you then to become more aware of yourself and more aware of how you're feeling by forcing yourself to take the time and acknowledge it.
- [59:00]
Host 1
And I'll just give a shout out. There's actually a company called pictl, P I C T A L run by a woman who has chronic illness and she has created software that will help form a visual map of your symptoms and over time. So yeah, it's definitely something to check out because sometimes I'm gonna check it out. It is easier to have that visual representation of your symptoms and just saying instead of saying, well, I had five days of this and I, you know, then once a week I had that. And I think again, this is another episode where we have the intertwining of physical symptoms and mental health symptoms and that it is not a black and white picture and that a lot of times they interplay off of one another. But that if we learn anything from our guests, it's that if you are diagnosed with only mental health conditions, but your symptoms do not go away with the standard treatments for those mental health conditions, we have to be looking into physical diagnoses.
- [60:11]
Host 2
Agreed. This is a good episode. I feel empowered after this one. I'm gonna go advocate for. I don't have anything to advocate for myself right now.
- [60:19]
Host 1
We're all advocated out.
- [60:21]
Host 2
Yeah. I hope that. I hope that someone listening here feels empowered to fight for their diagnosis and for their support.
- [60:29]
Shel
Yeah.
- [60:30]
Host 1
Well, thanks for listening.
- [60:31]
Host 2
Thank you so much, guys.
- [60:33]
Host 1
Bye.
- [60:45]
Host 2
The Medical Detectives is a soft Skills media production produced by Molly Biscar Sound designed by Shane Drause if you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical detectives podcast.com the.
- [61:01]
Narrator
Information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Podcast Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.