Redefining Recovery: Christina’s Journey Living with EDS and Its Hidden Challenges

In this episode of Hidden Diagnosis Impact, Christina shares her powerful journey living with Ehlers-Danlos Syndrome (EDS) and the complexities of navigating a healthcare system that often overlooks rare conditions. 

Christina opens up about her early symptoms, the pain of repeated misdiagnoses, and the emotional toll of being dismissed and mischaracterized by doctors. Her story sheds light on the physical challenges of EDS, from spinal instability to brainstem complications. Christina has redefined recovery, seeing it as a continuous process of adaptation and self-care rather than a cure. 

Chapters

• 0:00 Reflections and Advice for Others with Rare Conditions
• 0:00 Introduction to Hidden Diagnosis Impact
• 0:53 Early Signs and Symptoms
• 2:37 Misdiagnosis and Medical Gaslighting
• 6:34 Family Support Amidst Uncertainty
• 9:58 Coping with Anxiety Labels and Unnecessary Medications
• 14:16 Finally Finding a Diagnosis: Chiari, and more
• 20:34 The Impact of Missed Diagnoses on Health and Quality of Life
• 24:56 The Emotional Toll of Medical Dismissal
• 33:40 The Turning Point: Self-Advocacy and Finding the Right Doctors
• 42:10 The Complexities of Living with EDS and Spinal Instability
• 49:46 From Surgery to Self-Care: Finding Balance in a Complex Condition
• 57:34 Reflections and Advice for Others with Rare Conditions
• 1:03:29 Fighting for Validation: The Power of a Supportive Medical
• 1:10:18 Spinal and Brainstem Impact: More than Just Back Pain
• 1:14:06 Dynamic Imaging and the Challenges of EDS Diagnosis
• 1:17:02 Specialized EDS Knowledge vs. General Care
• 1:23:56 Misdiagnosis and Medical Dismissal: Functional vs. Real Issues
• 1:26:09 The Mental Impact of Being Told "It's All in Your Head"
• 1:29:31 When Surgery is Not the End: Embracing a Lifelong Healing Journey
• 1:33:49 Balancing Mental Strength and Medical Reality
• 1:39:01 When Medicine Fails: Finding Strength Amidst Medical Dismissa
• 1:43:17 Hope and Persistence: A Message to Other Patients
• 1:46:59 Closing Reflections: the importance of redefining recovery

Transcript

00:00:00:00 - 00:00:52:24

Amy Wang-Hiller

Welcome to Hidden Diagnoses Impact, the podcast uncover the often overlooked and misunderstood conditions from SCC II and beyond. We share stories and insights from those living with these conditions and health care professionals dedicated to diagnosis, treatment, and research. Join us as we uncover the reality behind these hidden diagnoses. Here is a podcast title update. Previously named A court awareness is now hidden diagnosis intact to better reflect our mission of revealing and understanding overlooked medical conditions.

00:00:53:01 - 00:01:14:15

Amy Wang-Hiller

Welcome today's guest, Christina, and she is going to share her personal battle with many of us and the comorbidities and the road at that finding the clarity and amidst uncertainty. So welcome, Christina. Thank you so much for agreeing to do this.

00:01:14:17 - 00:01:38:16

Christina Doherty

Well, thank you for having me. I'm Christina. So I have VDS, and I also have many of the comorbidities that come along with it. It's been a long journey, but, you know, I am just really glad to be here and sharing my story with you today.

00:01:38:18 - 00:01:56:02

Amy Wang-Hiller

Awesome. And I just want to, everyone to kind of understand a little bit first about where your journey started. You know, you know, first, we always say EDS is genetic, and then so the first time that I encountered the symptoms.

00:01:56:04 - 00:02:37:01

Christina Doherty

Yeah. Well, the Ehlers-Danlos definitely comes from my dad's side. Now, looking back, you know, hindsight's always 20, 20. We can see a lot of his cousins. And a lot of people in the family have it. And have since been diagnosed. But, I was the first, and I'd say probably one of the more severe. So I actually was pretty healthy until I was around like 9 or 10 years old, and it was more 10 or 11 that I started to really, you know, like it really got in the way.

00:02:37:03 - 00:03:07:03

Christina Doherty

I was a competitive gymnast up until then, actually. And so it was kind of a little bit difficult to spot the hypermobility just because I was so flexible. So nothing seemed weird, and it didn't seem weird that I was having some joint pain here and there. It wasn't until I was about 11 that I started to have, like, GI issues.

00:03:07:05 - 00:03:29:20

Christina Doherty

I got, like, I got this stomach bug. And it was funny because the whole family got it and I just could not get better. And it was like, you know, after that I would just catch like virus after virus and getting all these infections and, and these allergies, like, I just, you know, would only be able to eat a few different foods.

00:03:29:22 - 00:04:02:07

Christina Doherty

I had a lot of vomiting. Of course, I was starting to have joint back pain and ultimately had to stop gymnastics, which was hard. And so at probably age 11 or 12 is when I really started to look for a diagnosis, and I saw doctors across the board and, you know, you go to like a specialist for one small, vague thing, and they do all the testing and everything's fine and congratulations.

00:04:02:07 - 00:04:03:10

Christina Doherty

You're okay.

00:04:03:12 - 00:04:05:00

Amy Wang-Hiller

Ethan, it's.

00:04:05:02 - 00:04:09:09

Christina Doherty

It's not really congratulations. When you still feel so terrible.

00:04:09:12 - 00:04:10:16

Amy Wang-Hiller

Yeah.

00:04:10:18 - 00:04:37:23

Christina Doherty

And so I kind of just went through life like that for many years, and it wasn't until I was 16, that, an ear, nose, throat doctor just kind of happened to catch on my testing that I had, like, a pretty severe weakness in my vestibular system. So I was having terrible vertigo. Yeah. And dizziness.

00:04:37:23 - 00:05:04:03

Christina Doherty

And just, like, I could barely, like, raise my head and bad, I would just feel like I was rolling down a hill. And, you know, just like we just couldn't figure it out. And at that point, my doctors, just like they had said it was anxiety. I didn't want to go to school. It was a maybe an eating disorder.

00:05:04:05 - 00:05:31:07

Christina Doherty

Hypervigilance is what they, you know, instead of a hypochondriac, they say, like, hyper vigilant. Wow. And, so we didn't expect anything to ever really show up on testing. To have something show up was actually really shocking. So, like, when the inner ear stuff showed up, you're like, okay, you know, maybe this is.

00:05:31:09 - 00:05:32:18

Amy Wang-Hiller

Yeah, this is going on.

00:05:32:18 - 00:05:54:24

Christina Doherty

And, and that was really like it was a whirlwind after that. Because they had to take off my braces. I had to get like all these brain MRI as is. They were starting to think that I probably had a brain tumor. And so I went from it's nothing to, oh my gosh, like, pull out all the stops.

00:05:55:00 - 00:06:28:00

Christina Doherty

Yeah. You know, you probably have a brain tumor. And let's figure this out. But they found Corey and that. So that was my introduction to having a diagnosis. And I thought, hey, you know, I looked it up. Maybe this could be my answer. And like, this could explain all of the things that I've been dealing with for, you know, the last however many years.

00:06:28:02 - 00:06:33:20

Christina Doherty

But ten that, just sent us down a whole other hill.

00:06:33:22 - 00:07:05:08

Amy Wang-Hiller

Maybe I want to kind of, like, stop right here because I hear something that is very interesting. So how how was your family support? Like, you know, support, like. Yeah, especially with, you know, the the diagnosis or let's say down the road of like, you know, so many years of everything normal. Like, you know, go to the doctor's office being told like everything show up on tests is normal.

00:07:05:10 - 00:07:14:22

Amy Wang-Hiller

But they feel terrible. You to your family. They live with you. They probably know that it feel horrible. How did they.

00:07:14:24 - 00:07:16:05

Christina Doherty

Okay. Yeah.

00:07:16:05 - 00:07:27:13

Amy Wang-Hiller

I mean, I don't know how did it cope that more like, how do they support you or do they really believe or, you know, especially when anxiety hypervigilant those things that comes.

00:07:27:15 - 00:07:57:15

Christina Doherty

Yeah. So, so, well, I, I'm very thankful that my family was my my family was always really supportive of me. It was definitely like there were times where there was a little back and forth because you could see that, you know, I'm from an anxious family. Well, more so, you know, my dad and my sister, very anxiety prone.

00:07:57:15 - 00:08:12:19

Christina Doherty

And a lot of people in my family deal with anxiety. And so I think that there was some back and forth, in their thinking that, you know, that they wanted. I think they wanted it to not be serious.

00:08:13:14 - 00:08:40:20

Christina Doherty

So there's always kind of I think that that wanting to believe the doctors and wanting to believe that it's just anxiety. Yeah. But knowing that something was going on and, you know, my mom was always so steadfast when the doctors would say, you know, well, she doesn't get sick any more than any other kids. My mom was like, I could not disagree anymore.

00:08:40:22 - 00:08:45:22

Christina Doherty

I remember that night. She was like, we know other kids.

00:08:45:24 - 00:08:46:21

Amy Wang-Hiller

Yeah.

00:08:46:22 - 00:09:10:05

Christina Doherty

She's sick. Like she's vomiting every morning and like, she, you know, can really only eat a couple foods and she can barely get out of bed. And, like, her joints hurt and her skin hurts. And every time she gets sick, it takes so long to get better. And then, you know, it turns into pneumonia. And, you know, she got chickenpox at twice.

00:09:10:08 - 00:09:41:02

Christina Doherty

And I just think she's like that. She's not sick. Yeah. So I always felt like she was very much on my side. The struggle came in when the school started to ask questions because we didn't have answers. And the school, you know, they were starting to threaten to take us to court. Because I was missing so much school.

00:09:41:04 - 00:10:09:20

Christina Doherty

Yeah. And, you know, I was already so beside myself just not feeling well. And I was like, my school wants to take me to court. And in elementary school. Yeah. And I was always a straight A's student, so I was like, you know, when I was, well, I loved to go to school. You know, I performed while I didn't have, you know, social problems or anything like that.

00:10:09:20 - 00:10:31:21

Christina Doherty

So my mom was always, you know, she's like, I know my child. I like I know when she feels well and I know when she's not well. And so they really fought for me and brought me to specialists and, that I, you know, I think my dad wrestled with a little bit more. He didn't go to all the appointments.

00:10:31:23 - 00:10:33:00

Amy Wang-Hiller

Yep.

00:10:33:02 - 00:10:46:16

Christina Doherty

So maybe I, you know, he was he's never been as aware, as my mom has. My sister was just she had so much anxiety around it, so it was very stressful.

00:10:46:18 - 00:10:50:21

Amy Wang-Hiller

But you, you know, like, the your sister has the symptoms.

00:10:50:23 - 00:11:13:16

Christina Doherty

Yeah. So my sister also has eds. But it's much more minor so far. And we're hoping, you know, it'll stay that way. She's she's always dealt, though, with a lot, anxiety and a lot of health anxiety. And so it was very, very tense between us growing up and.

00:11:13:21 - 00:11:14:12

Amy Wang-Hiller

Yeah.

00:11:14:14 - 00:11:17:23

Christina Doherty

Just, you know, her dealing with me being sick.

00:11:17:23 - 00:11:19:13

Amy Wang-Hiller

And, you know.

00:11:19:15 - 00:11:25:06

Christina Doherty

You know, my mom, they give me a lot of attention.

00:11:25:08 - 00:11:29:16

Amy Wang-Hiller

Yeah. That's that's always hard to deal with. Like you know the siblings.

00:11:29:18 - 00:11:33:03

Christina Doherty

It's a hard dynamic like I said like down up.

00:11:33:05 - 00:11:55:00

Amy Wang-Hiller

So I would not know because I don't I'm a single child so I make out. Yeah. But I would love to have a sister for whatever reason. Like, even, you know, like I think about she has a lot anxiety, but you guys, so, you know, love her the same way because family, right?

00:11:55:02 - 00:12:05:08

Christina Doherty

Yeah. Yeah, it's a special. It's a special relationship. It's, you know, it's taken a lot of work over the years, but. Yeah, it it sure wish.

00:12:05:14 - 00:12:30:15

Amy Wang-Hiller

Yeah, I know, in fact, like, so much going through like your family, there's also always members that could not cope as well as, you know, some do. Yeah. My my mom, it's always like. So it's just a worry about me. My dad's motto just, you know, not now. He gets tired so he doesn't want to. Dallas manages to go to bed.

00:12:31:24 - 00:12:47:18

Christina Doherty

I my dad's the same way. He's, like, very. You know, we're both very schedule people, so it's like we take our night match at the same time. And I feel like very different. Like, okay, I'm going to bed now.

00:12:47:20 - 00:13:01:18

Amy Wang-Hiller

Wow. Well that's good. Like, you know, and these, like, when they say that you have mental health issues or something like that. Like how, how do you feel about it? Did you ever doubt.

00:13:01:20 - 00:13:33:15

Christina Doherty

That was hard? I, you know, I'm one of the as I was like, well, performing in school and, you know, I always I tried very hard. You know, I, I wanted to do. Well, I wanted to, I wanted to be perfect as much as and it was very frustrating for me going in and, you know, having the doctor continue actually saying that it was anxiety and that I was doing this for myself.

00:13:33:17 - 00:13:59:06

Christina Doherty

Yeah. I mean, when you're a kid and you have an adult saying something like that to you, like you do kind of question while, you know, there's nothing on the bloodwork, there's nothing on the imaging. Like maybe this is like what other people are dealing with. And I'm just not doing a good enough job, you know? Yeah. I'm like, I'm somehow maybe I'm not sick more than other people.

00:13:59:06 - 00:14:26:14

Christina Doherty

I'm just not putting up with it the same way, you know, pushing through, heading to school. And, it was it did make me kind of question myself. I really thought for a long time. And then it got to a point where my pediatrician was like, you know, I don't know if I can treat you any more unless you try something for the anxiety.

00:14:26:16 - 00:14:55:08

Christina Doherty

And so they put me on anxiety medication. At age, I think 11 or 12. And, my dad was on that one. My sister was on that one. They both needed it, but I could see the difference. You know, I grew up in a household with anxiety, and I didn't feel like it fit me. And I just, like, fought it for so long.

00:14:55:08 - 00:14:58:04

Christina Doherty

And I ended up having to take the medication.

00:14:59:01 - 00:15:21:22

Christina Doherty

And when I went to the doctor to speak to them I was like it's, it's not doing anything. You know I don't feel any different, feel any better. And so they said well it must just not be enough. And so they that and they opted again and but I don't know what. I don't know how much I was on by the time I was finally diagnosed.

00:15:21:24 - 00:15:38:23

Christina Doherty

But I can say that when I was finally given the correct diagnosis, I asked to be taken off, and they took me off so quickly that I ended up in the emergency room with my real panic attack.

00:15:39:00 - 00:15:40:17

Amy Wang-Hiller

And then you're like, well, that that is.

00:15:40:17 - 00:15:44:12

Christina Doherty

Now I know what anxiety.

00:15:44:14 - 00:16:02:17

Amy Wang-Hiller

Yeah. Like, a lot of people don't really realize, like, what exactly the mental health feeling is, right? Just just like a lot of people don't know. And, like, I feel like if they don't have a migraine.

00:16:02:19 - 00:16:03:14

Christina Doherty

Yeah, but.

00:16:03:16 - 00:16:11:13

Amy Wang-Hiller

It it it's exactly the same thing. Things are vague. And so until they experience it, yeah.

00:16:11:17 - 00:16:38:00

Christina Doherty

The medications, I mean, those things are anxiety medications are not something to be messed around with. And I really don't think that it should be pushed on. Children. I definitely dealt with a lot of, issues with panic coming off of those medications. It really changed the, you know, the whatever it they call it, like the where the brain chemistry.

00:16:38:02 - 00:16:39:02

Amy Wang-Hiller

Yeah.

00:16:39:04 - 00:17:03:16

Christina Doherty

That's why I, I ended up with a panic attack, and I was you know, shaking. I mean, I thought I was dying, and it was withdrawals from this medication that I never needed and that never did anything. So that was incredibly eye opening. And I just don't think that pharmaceuticals should be a first line and anxiety, especially for children.

00:17:03:18 - 00:17:15:13

Amy Wang-Hiller

I, I like the self-awareness of it. Like, you know, you you said I just don't feel like it's the same as, like, you know, your, your sisters or your dad's like, you know.

00:17:15:15 - 00:17:39:03

Christina Doherty

Right. And I understand that we all we're human and we all experience this wide range of emotions. You know, we all feel tired. We all feel depression. But it wasn't an anxiety disorder. And that's when you treat it. It's just part of the human experience. And I just don't believe in that.

00:17:39:05 - 00:18:05:09

Amy Wang-Hiller

That's good. And like I like the awareness of how, you know, like because a lot of people being gaslighted and I really think about that, they do. And so like fitting like me, I fit in the box of like, you know, having a bipolar. And so you looking at your mood up and down, but you didn't realize the normal human being has the motion of up and down too.

00:18:05:11 - 00:18:37:21

Christina Doherty

Yeah. It's it's especially difficult for me now coming out of it because now I have PTSD. Yeah. And I'm experiencing flashbacks and panic attacks and a lot of anxiety, and I felt a lot of shame and also kind of the feeling of needing to hide that because I had thought, because of my childhood, that I couldn't have both, that I couldn't be physically sick and also have emotional and mental health problems.

00:18:37:23 - 00:19:03:18

Christina Doherty

Yeah, that had to be one or the other. And so now it's just been a kind of really difficult process for me to get through therapy and, just be honest about how I'm feeling, because I'm afraid that if I say that I'm anxious, that I'm just going to get thrown into the, you know, bin of, you know, the, you know, the anxiety, young woman and now all my physical symptoms like any anxiety.

00:19:03:20 - 00:19:27:22

Amy Wang-Hiller

Depression. Yeah. That makes sense. I mean, it's it's it's difficult to me to, like, I have to get to the calm state, like I'm always calm. So then, you know, like, I'm getting to the doctor's office and, like, no, see, I'm not having any kind of emotional like, you know, mental disorder or factors that are causing the physical issues.

00:19:27:24 - 00:19:39:04

Amy Wang-Hiller

So that's why I was wondering, did you ever get diagnosed with something that it's like, oh, it's must be your mental affecting your physical?

00:19:39:06 - 00:20:11:04

Christina Doherty

Yeah. I mean, after let me see. So I had surgery for the Kyari. Yeah, in 2012. And we really thought, that would probably be it. Like we thought that this was the answer. I was set up with the neurosurgeon very quickly and, I actually had, different experience and a lot of ideas people have where my crew was very visible on a regular MRI.

00:20:12:04 - 00:20:48:22

Christina Doherty

Oh, yes. I got lucky. That it was severe enough and the surgeon really wanted to move quickly. Everyone said he was the best in the business. I live in Boston. Pretty good healthcare usually. So I was really fast tracked in the surgery and, it was great for six weeks and then things got bad. And that's where my journey with cranio cervical instability and Allen to axial instability.

00:20:49:18 - 00:20:53:13

Amy Wang-Hiller

They didn't find that issue before the theory.

00:20:53:15 - 00:21:11:12

Christina Doherty

So I did not know I had EDS. I did not know I had instability. I even though at that point I was walking with crutches because I couldn't put any weight on my right leg. I had such bad back pain and hip pain.

00:21:11:14 - 00:21:12:15

Amy Wang-Hiller

And,

00:21:12:17 - 00:21:28:19

Christina Doherty

And, you know, we they zeroed in on I zeroed in on my lower back, and I apparently, you know, I had some discs that were out, and they didn't think that was unusual for a 16 year old.

00:21:28:21 - 00:21:33:14

Amy Wang-Hiller

That's like, not 61 by 60.

00:21:33:16 - 00:22:00:06

Christina Doherty

That's not right. Never. So I came in, I came in to the neurosurgeon with, you know, to for Kyari. I had a knee brace on. I had, back raised, I had crutches, I had an ankle brace and I didn't say I didn't think about it. And I had Kerry surgery and so many of the symptoms got better.

00:22:00:06 - 00:22:03:24

Christina Doherty

And, you know.

00:22:04:01 - 00:22:07:19

Amy Wang-Hiller

It's validating that you did. Yeah.

00:22:07:21 - 00:22:30:22

Christina Doherty

Yeah. It's wonderful. You know, we were rejoicing this was cancer. And then six weeks later, I was in the emergency room. I had started it started small. You know, it started like some twitching in my fingers, and I just. I was at a movie, and I just, like, was sitting in the movie, and I was like.

00:22:30:24 - 00:22:32:14

Amy Wang-Hiller

But yeah, yeah.

00:22:32:16 - 00:22:41:22

Christina Doherty

It was starting to twitch. And then, like, my foot started to go and I was like, that's interesting. I guess I'm over stimulated.

00:22:41:24 - 00:22:47:02

Amy Wang-Hiller

Yeah. Like I, I saw the same thing, like with the twitch.

00:22:47:04 - 00:22:52:24

Christina Doherty

Yeah. And so it we're, I think we're using the Avengers. So I was like I'm just.

00:22:53:01 - 00:22:53:08

Amy Wang-Hiller

Like.

00:22:53:08 - 00:23:07:05

Christina Doherty

Overwhelmed. But it started to get worse and it started to become more continuous. And I would just sit there and whenever I was just passive, my foot would just be. Yeah.

00:23:07:07 - 00:23:09:08

Amy Wang-Hiller

Oh, okay.

00:23:09:10 - 00:23:36:19

Christina Doherty

That just got bigger and bigger, with the motions. So, six weeks after my surgery, I ended up back in the E.R.. The just kind of full body convulsion is just very cyclical. Yeah. And, you know, we went through all the seizure testing and, all the it is and it's, you know, it wasn't coming from my brain.

00:23:36:21 - 00:24:02:12

Christina Doherty

Yeah. So it had to be, you know. Well, it wasn't coming from my brain so much the kind of from my brain, you know, and I don't know. And I just remember, like they said, well, you know, you just need to get some exercise because, it'll help the neurons to fire again. And I was like.

00:24:02:14 - 00:24:05:14

Amy Wang-Hiller

The neurons to fight it to the fire, to much.

00:24:05:16 - 00:24:37:18

Christina Doherty

Bigger here. And now you're telling me that, like, I have to retrain my neurons in the exercise? Okay. You know, they just they kept imaging it and saying, you know, the problem is fixed. The surgery was successful. Your EEG is clean, and that's that, you know, like. Yeah, this is really scary. Because really, after that, all hell broke loose.

00:24:37:20 - 00:24:49:21

Christina Doherty

The the I don't. Yeah. We call them now. We know it's dystonia. Yeah. Then we were just calling Mayo Clinic jerks.

00:24:49:23 - 00:24:53:11

Amy Wang-Hiller

Did you have the long medications for it or just.

00:24:53:13 - 00:25:26:20

Christina Doherty

Yeah. So that is when I started to have some pushback from doctors. But, let's see, is some. What just happened since then that it's like, okay, so I said six, six, ten is when the Mayo Clinic started. And then probably a few months later is when all of a sudden I had an episode of, one sided paralysis.

00:25:27:00 - 00:25:27:20

Amy Wang-Hiller

Yeah.

00:25:27:22 - 00:26:04:20

Christina Doherty

And, you know, I knew enough that we should probably have vaccine, came into the E.R.. I couldn't walk, you know, I had total facial drooping on one side when I smiled. It was not symmetrical. I was slurring my speech. I had that confusion. I was not in my right mind at all. And, that is probably the first time that I had a hearing that I had a small stroke.

00:26:04:22 - 00:26:05:10

Christina Doherty

And it.

00:26:05:10 - 00:26:06:13

Amy Wang-Hiller

Detected.

00:26:06:15 - 00:26:10:22

Christina Doherty

I was not even given imaging.

00:26:10:24 - 00:26:13:07

Amy Wang-Hiller

So, like, I was sorry.

00:26:13:09 - 00:26:16:02

Christina Doherty

So go ahead.

00:26:16:04 - 00:26:29:12

Amy Wang-Hiller

Okay. So I was wondering if you had Tia and they didn't do imaging. Was it because the symptoms, you know, that it's really similar to it and that you're certain.

00:26:29:14 - 00:27:02:01

Christina Doherty

That was, much further down the line is when I started to have them more regularly. And, they found that I had venous stenosis in my brain and in the veins, like my jugular veins. So everything. A lot of my veins have collapsed, so I have had now what we understand to be ties. But then we knew nothing.

00:27:02:01 - 00:27:31:23

Christina Doherty

I still didn't have an EDS diagnosis. I didn't know anything. All I knew was that I had history. I had surgery for the CRE. I was doing well. And then all of a sudden I wasn't doing well. But my imaging was clear and I was all good to go. They told me they had a someone in last week who had this surgery, and he went skiing like, like a month after his surgery.

00:27:31:23 - 00:28:00:12

Christina Doherty

And he's doing great. So I should try to get moving and get exercising. And, I should stop focusing so much on my symptoms. But at the same time, they sent me to a neurologist who put me on anti-seizure medications, and he did the same thing that I saw with the anxiety. I was say, you know, this is doing nothing.

00:28:00:12 - 00:28:06:11

Christina Doherty

And they just kept adding it, nothing, it lapping it till the point where I was on the max dose or something called Keppra.

00:28:06:13 - 00:28:08:11

Amy Wang-Hiller

Oh yeah, I was on that too.

00:28:08:13 - 00:28:34:21

Christina Doherty

Yeah. And I didn't even know I was the medication this was and what I was doing. I mean, I had never even taken Tylenol before any of this stuff had started. And now I was on all of these medications. They weren't doing anything. And they were telling me I didn't have anything wrong with me. But still, they were medicating me.

00:28:34:23 - 00:29:10:01

Christina Doherty

But that was the first time like that. I saw a doctor go from, you know, believing me and really, like, trying to help me to just being like, well, you know, the tests are fine and the meds aren't working, so this must be mental and get my mom out of the room. And they had they asked me on these, you know, do you know, do you like, have eating disorders or do you ever want to injure yourself or, you know, all of the stuff?

00:29:10:01 - 00:29:39:02

Christina Doherty

And it was really scary all of a sudden to feel like, you know, my support was whisked away. And then they were bombarding me with all these questions, and I was just like, I don't know, I just stopped feeling while and, you know, I started losing the ability to like, hold foods down and swallow and just having a lot of different things come up and a lot of negative answers.

00:29:39:04 - 00:30:00:15

Christina Doherty

And that was when I kind of took over trying to figure out what was going on. And, I actually, believe it or not, found out about, Ehlers-Danlos syndrome on an episode of Mystery Diagnosis. Until.

00:30:00:17 - 00:30:02:01

Amy Wang-Hiller

Yeah.

00:30:02:03 - 00:30:28:06

Christina Doherty

So it's like just one of those freak things. And I do remember watching it and being like, you know, that looks really familiar. And at the end there, you know, she has a malformation. And I was like, oh my gosh, no way. Like, I just had surgery for that. And but wait, there's more. She also had Ehlers-Danlos syndrome and spinal instability.

00:30:28:12 - 00:30:54:02

Christina Doherty

And that was when my brain was like, oh. So I looked it up and I remember like, my mom woke up the next morning and I handed her binder and I was like, this is what I have doctors. I need to see it. And, long story short, we went to a geneticist and I was right.

00:30:54:04 - 00:30:54:22

Amy Wang-Hiller

Yeah.

00:30:54:24 - 00:31:09:15

Christina Doherty

And, that started us down the path of figuring out what was going on and, finding out that I was unstable, just not in the ways that my other doctors thought I was.

00:31:09:17 - 00:31:31:06

Amy Wang-Hiller

Yeah. I like the part that you said. I just had my mom the binder, like, yeah, I find the answer. Yeah, I just find that binder. I have a lot of binders, but now I can not use it. But it's funny, like, you know, we seem to know our symptoms so well and they ends up to be right, you know?

00:31:31:08 - 00:31:42:19

Amy Wang-Hiller

But the doctors seem to be like, on the other side, especially the one support you and to know what to do and suddenly become like now we have something to blame. Like, you know.

00:31:42:21 - 00:32:07:02

Christina Doherty

I know it's like, hey, but you know, when I showed it to my pediatrician, I figured she would, you know, it, care. And, she she was like, how was I ever supposed to figure that out? And I looked at her and I was like, I don't know, but I'm 16. And I figured it out, so. Yeah.

00:32:07:04 - 00:32:16:00

Christina Doherty

And she also, I mean, she was really dismissive. She said, oh, that's the circus person disease. You don't have that. And I was like, excuse me.

00:32:17:02 - 00:32:36:11

Christina Doherty

Like, watch me, like I'm in the night. So I went and I got a diagnosis and that was the last time I saw her. I was, I was so done by then, my whole childhood, she had just told me, it's all in your head and it's anxiety, and it's this. It's that you're, you know, you don't have this.

00:32:36:11 - 00:32:39:21

Christina Doherty

You don't have that. Like. Yeah, well.

00:32:39:23 - 00:32:44:20

Amy Wang-Hiller

But she didn't really want to even to learn or. No, not at all.

00:32:44:22 - 00:32:58:09

Christina Doherty

So yeah, I mean she was completely dismissive and that's really just okay. It is. I don't know how many other patients she could have missed. And that's the scary thing.

00:32:58:11 - 00:33:01:10

Amy Wang-Hiller

Yeah. Because it's more common than we know.

00:33:01:12 - 00:33:10:08

Christina Doherty

Right? Yeah. I actually have met more people who actually had her as a pediatrician pediatrician as well. And she missed it in their case as well.

00:33:10:08 - 00:33:23:19

Amy Wang-Hiller

So, I mean, yeah, you can even start with mild, right? Because it's not just like they wanted to, bombard a command of symptoms, but it's just collective. And then and gradually getting worse and worse.

00:33:23:19 - 00:33:39:16

Christina Doherty

All the little things over the years that seem unrelated and all the different specialists she was having to write the. So, you know, for me to see and you know, I can't you can't blame them for not knowing.

00:33:39:18 - 00:33:39:24

Amy Wang-Hiller

Yeah.

00:33:40:04 - 00:34:17:01

Christina Doherty

But you it's sometimes it's hard to mesh that with their response once you do know when you do those answers and you go back to them, you know there's some doctors who will be interested and want to like, learn more. And, you know, we're apologetic that they, you know, missed this for so long. And then there's this. The ones that have the egos and it's just like, well, you know, you know, you get that, like like they need to be confronted.

00:34:17:03 - 00:34:28:14

Amy Wang-Hiller

So yeah, I mean, especially they feel like they spent so many years in medical school and, and suddenly, like, someone I can't tell me, like, they know why.

00:34:28:16 - 00:34:39:12

Christina Doherty

Yeah, yeah, I can, I can imagine how to. Yeah. Just have a kid be like, well, I figured it out, but I mean, I did.

00:34:39:14 - 00:34:54:13

Amy Wang-Hiller

That's I feel like as a, as a physician, somehow they hold whatever they respond to the patients because that's their reaction really changes. Like how patients view themselves through things that.

00:34:54:15 - 00:35:24:08

Christina Doherty

Yeah, I, I think her voice will always be in my head. And that's the hard thing is that like in a lot of times my mom is like, you know, if she's if she's talking to me and she's trying to get to the bottom of what I'm feeling, and I don't really know how, I was never really given the tools to explain how I felt, but all I have is that voice in my head that's saying, you know, you're not sick anymore than regular people, and you need to try harder to go to school.

00:35:24:08 - 00:35:49:15

Christina Doherty

And maybe this is anxiety, and there's always that voice that makes me feel so guilty and I don't like. It's so sad that whenever I talk to people with chronic illnesses, it's like this immense guilt that we're not so filling these things like going to school, getting a job, work. Yeah, it's like we feel like we can't participate in life because we haven't earned it.

00:35:49:16 - 00:36:16:21

Christina Doherty

And I just always had well, you know, you don't deserve to go out and have fun because you haven't earned it. You know, because you're missing out on other things. I don't know really where it's at, but I think that, you know, having a doctor who didn't believe me from a very young age really did a lot to, you know, solidify how I think about myself and how I think about my illness.

00:36:17:17 - 00:36:33:03

Amy Wang-Hiller

I mean, it's it's essentially someone that having a little bit of, more authority than you that has more impact, to how you think. Right? Just like teacher, sometimes one teacher responded to the kids.

00:36:33:09 - 00:37:28:06

Christina Doherty

Yeah, unfortunately, really negative experiences with teachers as well. I just, I didn't have answers to give as to why I wasn't in school and it was really taken out on me. But, yeah, I just I look back and I just wish, like, all of these people didn't have all these egos, just like I think about that year between being like, the year between having Chiari surgery and being diagnosed with Ehlers-Danlos and undergoing, surgery for my instability, I just wonder what I could have prevented had I had doctors who were fighting for me in that time.

00:37:28:06 - 00:37:43:21

Christina Doherty

I, you know, I had a good amount of injury, because I, I had you know, I look, I'm trying to figure out how to, like, phrase this in like, a way that you can, you.

00:37:43:23 - 00:38:06:12

Amy Wang-Hiller

Well know, like I, you use anything. So I told people like, you know, this from a sort of like a yeah, we need to be sort of like, be careful or not really like, like offend anyone too. Like it can be explicit, you know, like, you know, white people just don't mention a doctor's name or anything like that, but you can.

00:38:06:12 - 00:38:10:22

Amy Wang-Hiller

Yeah, you can say anything the way that you want to. I mean.

00:38:10:24 - 00:38:45:12

Christina Doherty

I had to phrase it because I think that this is the most important takeaway, is that, you know, I suffered and I know that you understand this, like I suffered an injury to my brain and spinal cord within the year that I waited. And I just wonder what my life would look like right now if I had known that I had Ehlers-Danlos from the beginning.

00:38:45:14 - 00:39:19:00

Christina Doherty

And I just wonder if I had doctors on my side, and if I had had the full picture, if I would have ended up with a fully fuzed spine. Like that is not something that I recommend to anyone. I mean, it's not an outcome that is desirable, and I just wonder if it could have been prevented if everybody could have just listened and put their egos aside.

00:39:19:02 - 00:39:20:03

Amy Wang-Hiller

Yeah.

00:39:20:05 - 00:39:24:06

Christina Doherty

And it's it's really such a shame and really.

00:39:24:08 - 00:39:53:10

Amy Wang-Hiller

Yeah, I, I'm, I'm just thinking that, yes, this is a really important take away. And I also think that when you say that putting their egos away for once and it feels like, you know, to letting them know that it really doesn't really hurt for them to take their egos is on the side what it is. And that a lot of feeling uncomfortable, it's actually saving people's life.

00:39:53:12 - 00:40:07:11

Amy Wang-Hiller

And not only just saving people's life as like, you know, you know, in a better way. You term, but also like, you know, saving people's life as the rest of their life. That will be maybe with much better quality. Oh yeah.

00:40:07:16 - 00:40:33:23

Christina Doherty

It makes a huge impact. And unfortunately, you know, I just I was dealing with a lot of egos, when I went back with an Ehlers-Danlos diagnosis to my surgeon, he. His demeanor just changed. He was a totally different person. He wouldn't look me in the eye. He was really dislike typing on his computer. And he didn't even turn to really speak to me.

00:40:33:23 - 00:41:06:22

Christina Doherty

And I was saying, you know, I've done research about Ehlers-Danlos, and it turns out that like it's seen with Chiara a lot, you know, and knowing who he is, I know that he had to know that. And, you know, when I came in with all of these different braces, when I first saw him, you know, something in his brain should have clicked and he should have said, you know, yeah, yeah, that's like, maybe this is a bigger condition.

00:41:06:22 - 00:41:35:08

Christina Doherty

And before we do surgery, we should do some more investigation. All I had was a brain MRI, you know, coming to him, that's all I had. And it was so different a year later when I went and saw a surgeon who was familiar with EDS, and it was all of a sudden I was getting flexion, extension, all rise, having different parts of my back looked at.

00:41:35:10 - 00:41:43:02

Christina Doherty

And even then we didn't have a full picture before I went into surgery, because this was like the beginning.

00:41:43:04 - 00:41:44:08

Amy Wang-Hiller

Of.

00:41:44:10 - 00:42:13:22

Christina Doherty

All of this kind of stuff in the EDS world. And it was believed, you know, you have so-called ctwo fuzed, and then you have tethered cord and then you're cured. You know, that is like the protocol. And so when we did see that, like 4 or 5 and six were unstable just by accident in my first imaging. And like we had that history, it was discs in my back that I never really put together.

00:42:13:24 - 00:42:44:22

Christina Doherty

The why didn't we think about that? But, it was a different world back then. So I had a skull to see tooth fuzed, which saved my life. And, and the shape that I was in when I got to him, was it, you know, I, I just wonder if it could have been prevented. If we knew all of these things before I.

00:42:44:22 - 00:43:12:22

Amy Wang-Hiller

Was so up. Yeah. So there's, like, flexion, extension, shoulder a lot. Or is that, like, this fits, you know, the C1, C2 and all that rotational CT and stuff. That, that, that, that, that angles that changed and also always the, the 0 to 1 like, I don't know how bad it was. The shape was the imaging the.

00:43:13:03 - 00:43:13:08

Amy Wang-Hiller

Yeah.

00:43:13:08 - 00:43:51:20

Christina Doherty

So my my story there. So I had a very aggressive decompression for my Chiara. So this is why I say what I said before, that if we had had the full picture, I wonder what damage I would have been able to avoid. I had it a lot of C1 taken out, and I had a lot of the back of my skull taken out, and I had a dura plasti and all this stuff.

00:43:51:20 - 00:44:22:12

Christina Doherty

So when they were imaging me over and over with my symptoms and they were saying, there's no qui, are you? It's gone. They were not kidding. Like, there is so much room like you see the MRI and it was just like so much skull and bone was taking out that my head had just completely slipped down.

00:44:22:14 - 00:44:27:13

Amy Wang-Hiller

But they said, fine because it's supine panel, I guess.

00:44:27:15 - 00:45:03:10

Christina Doherty

Well, on my flexion and extension and you could see that like there is nothing supporting my head but brain on spinal cord and to the point where my surgeon had to make a special plate because there was nothing to screw the plate to. Yeah, they had taken everything. And so that's why I, I wonder if, you know, we would never have been so aggressive in this decompression if we had known that I was already unstable.

00:45:03:12 - 00:45:12:24

Christina Doherty

And then they just took out everything that was like supporting it at all. And of course, they cut through the muscles.

00:45:13:01 - 00:45:13:24

Amy Wang-Hiller

Yeah.

00:45:14:01 - 00:45:49:09

Christina Doherty

Muscles take a while to regenerate as so, you know, my head was really just there was nothing at that point. So that was a no brainer. Literally, that, that surgery, we very quickly did that. Yeah. But it two weeks later I completely lost the ability to walk. And it was like, yeah, it caught.

00:45:49:11 - 00:45:54:01

Amy Wang-Hiller

Well. So like after you did the fusion.

00:45:54:03 - 00:46:19:00

Christina Doherty

So when they pulled my head up, I seen that two inches and it pulled on the cord. And so I was just about to go home and I was walking up the stairs. I remember like it was yesterday. And it was like with each step I went, is it? My leg was like less and less able to really support me.

00:46:19:00 - 00:46:24:19

Christina Doherty

And I just sat at the bottom of the stairs and say, I can't move my legs.

00:46:24:21 - 00:46:25:13

Amy Wang-Hiller

Yeah.

00:46:25:15 - 00:46:59:04

Christina Doherty

And you know, I lost continents and you know, all of those great things that you want to have below the waist. So after the E.R., luckily, I was still near the surgeon. And the next day, I had tethered cord surgery, and it turns out I had, the spinal bifida, a cold. So, missing. Yeah.

00:46:59:04 - 00:47:04:01

Christina Doherty

You. Yeah. It is great with that, aren't we?

00:47:04:03 - 00:47:06:07

Amy Wang-Hiller

We're so.

00:47:06:07 - 00:47:11:02

Christina Doherty

Yeah. Missing bone. I had to put plates and some screws and and.

00:47:11:04 - 00:47:12:01

Amy Wang-Hiller

Oh.

00:47:12:03 - 00:47:20:13

Christina Doherty

They do I because I was, like, missing, like, a whole vertebra. And I'm like, how did we not notice this before?

00:47:20:15 - 00:47:24:07

Amy Wang-Hiller

Yeah. My like yours are a quarter right.

00:47:24:09 - 00:47:29:21

Christina Doherty

Yeah. So it was. Yeah it was still closed. So we didn't. Yeah. Died.

00:47:29:22 - 00:47:46:02

Amy Wang-Hiller

But yeah my mind is also a quarter. But I don't know like I heard expert was, you know, talking about how the alcohol makes a much likelihood for having the, the abnormal basically.

00:47:46:04 - 00:48:00:17

Christina Doherty

Yeah. Yeah. So, I mean, I, I always say that like, I guess I'm one of the lucky ones because my imaging it did show tethered cord once we checked and I.

00:48:00:23 - 00:48:03:02

Amy Wang-Hiller

I guess because when.

00:48:03:04 - 00:48:04:24

Christina Doherty

Yeah, I was really.

00:48:05:01 - 00:48:05:20

Amy Wang-Hiller

Yeah.

00:48:05:22 - 00:48:26:24

Christina Doherty

I look a little weird in there without that further for me. So you get better. Yeah, I, I consider myself lucky that my car, my tethered cord were never questioned. Because I know that's a huge problem in our community. Yeah.

00:48:27:01 - 00:48:38:00

Amy Wang-Hiller

Yeah, I, I, I still now consider having a theatrical release surgery. Just having a back surgery. Noted.

00:48:38:02 - 00:49:01:02

Christina Doherty

Well, I can say that it was like night and day after that surgery. It was like I woke up and I was like, oh, my gosh, I can stretch out my legs like, it's been so long. Last time I could do that. Like, I did have, neurogenic bladder ahead of time. We did test for that. Yeah.

00:49:01:03 - 00:49:08:03

Christina Doherty

So it was on our radar. But it we definitely didn't expect to have the surgery so quick.

00:49:08:05 - 00:49:14:20

Amy Wang-Hiller

And then did do any bladder and bowel function coming back completely.

00:49:14:22 - 00:50:02:15

Christina Doherty

I gained everything completely so and I think probably like thing I'm thankful that I didn't have years. Just having like severe tethered cord I like my quarter was always tethered, but it was really only the two leak that I had the, the extreme pressure, like pulling from the, the, the fusion. So I didn't have, like, years of, of terrible bowel, bladder, you know, paralysis that some people have to, like, fundraise or find doctors and like not time.

00:50:02:17 - 00:50:04:14

Christina Doherty

The damage is gone.

00:50:04:16 - 00:50:39:18

Amy Wang-Hiller

I mean, yeah, for me too. I honestly was waiting for the surgeon is in the network, so, like, you know, it's easier. Yeah. But the harder part is, like, really getting everything root out before you'd have surgery. I had my ted. Awkward first. That's why I lost everything from waste on, except some feelings. And then that's when the things got worse.

00:50:39:18 - 00:50:43:02

Amy Wang-Hiller

Like, we kind of, like, we always switch, right? Like I'm the.

00:50:43:08 - 00:51:00:12

Christina Doherty

Yeah. Yeah. And I seen them go back and forth so many times. And I know different doctors have different opinions on that. Yeah. I don't know what your opinion is. If you were glad that you went tethered cord first or if you wished that you I didn't.

00:51:00:14 - 00:51:33:09

Amy Wang-Hiller

I think I not. Yeah. I don't stay away. I think there's an issue with like even patients has experience and then that gives you a little bit of a thought into like whether or not you do, medical first because like, surgeons there will be like, I really don't know, like, yeah. And it's up to you. And then you look at all these patients that like, oh no, you really have to do tether first.

00:51:33:11 - 00:52:00:12

Amy Wang-Hiller

You know, like with all the support group, like with all the questions you ask, you know, like yeah. So it's like a vote, right? Everyone's like, okay, there's 60% of people saying terrible person that I would just do that first, kind of take a little shot because I unfortunately didn't really see a surgeon, wasn't able to see a surgeon, about my civil stability issues.

00:52:00:12 - 00:52:06:01

Amy Wang-Hiller

And I was not very pleased with my stability. Yeah.

00:52:06:03 - 00:52:36:04

Christina Doherty

It's hard, and I don't know if there is a right answer. I, I've had my cord tethered three times now, and, the second time, it was like I had thoracic instability very severely. And like, my surgeon was like, we have to tether you before we can fuzed the thoracic. And that, I think, was the right call.

00:52:36:06 - 00:53:03:03

Christina Doherty

But I definitely remember in the moment being like, I am much more disabled by the thoracic because that was, you know, that really affected my breathing and that really caused severe dystonia. So I was like, just do tether me, you know, just do it. And be tethered. And then like a month later, I had my two kids. That's

00:53:03:05 - 00:53:23:04

Amy Wang-Hiller

That's interesting. I, I thought I because see how why did, the thoracic, well, why did the thoracic had to fuze and then they said, oh, there's detectar. Like, I didn't really get that part. Sorry.

00:53:23:06 - 00:53:57:12

Christina Doherty

No, no, it's fine. It it was just I reached the point later on where, like, I, I feel like because they kind of came at the beginning of some of the understanding of spinal instability with. Yes. There was a lot of things that we kind of we didn't really have any one to look at to say, oh, this is what we can expect.

00:53:57:14 - 00:54:23:24

Christina Doherty

Yeah. It was I don't want to say I was the guinea pig because I, I like I hate saying that, but it was all experimental at that point. And so I had re tethered and I had also had pretty severe thoracic instability. And so we were going back and forth. But which one do we take on first.

00:54:23:24 - 00:54:40:24

Christina Doherty

Because we know we have to do both. And you know, because they were obviously going to be putting in rods and bone. They were like, we have to do tether you first. Yeah. But in my head I was like, you know, I just want to be able to breathe.

00:54:41:01 - 00:54:42:12

Amy Wang-Hiller

Yeah.

00:54:42:14 - 00:54:58:14

Christina Doherty

Like, I could care less about lactate. Right now. I just want to breathe. Yes. And, like, you know, I mean, I think that you probably know those, like, the rigors and the dystonia and just the seizing. It's just exhausting.

00:54:58:20 - 00:54:59:12

Amy Wang-Hiller

Yes.

00:54:59:14 - 00:55:10:13

Christina Doherty

Completely. Like mentally. Physically. And so I was at a point, Ben, where was I was like, I don't care about the I don't care about the tethering.

00:55:10:15 - 00:55:15:10

Amy Wang-Hiller

Did you get any medication? I don't really help the stone. Yeah.

00:55:15:12 - 00:55:54:07

Christina Doherty

I was I was put on a few different things that I'm still on. And, I was put on something of a routine, which it's like, try hexi fentanyl and I think it's a Parkinson's medication. Yeah, and that helps. I still take it. And then also I take back live in and back again around the clock or so I although I am fully fuzed and I live a pretty normal life right now with my spine.

00:55:54:09 - 00:56:20:16

Christina Doherty

I'm still on a lot of medication. Yeah, that helped me to stay this way. And it's. I have a lot of damage. It's like the years of being unstable and then all of the surgeries to fuze me and then to fix things that went wrong. And all these brief visits. And.

00:56:20:18 - 00:56:21:13

Amy Wang-Hiller

Yeah.

00:56:21:15 - 00:56:48:21

Christina Doherty

It's done a lot of damage to the nerves and my functioning. So I'm so thankful for where I am today. Like, I could not even have ever predicted life like this. I, you know, I didn't know if I was going to live, never mind again. And now, you know, I'm walking for like, an hour and a half on the treadmill every day.

00:56:48:21 - 00:57:04:03

Christina Doherty

And let's do, like, balance ball exercises. And so I, you know, I, I guess that my main takeaway is just like, don't give up hope.

00:57:04:05 - 00:57:35:07

Amy Wang-Hiller

I just, I don't know, like, I think the, the part that really gets to having the function sometimes I think is to timing honestly. And I feel like some of you guys like around the area that it's like having the, the, the treatment, having the surgeon that's like very important, the most important things that. Yeah. Yeah. So like he leaves you right.

00:57:35:07 - 00:57:44:20

Amy Wang-Hiller

And like then they say detector again. Otherwise you couldn't find one. And then there will be years of wait.

00:57:44:22 - 00:58:11:21

Christina Doherty

Yeah. And I really struggle with this as an advocate. Because I have put myself out there and I have shared my story. And because of that, I talk to probably dozens of new people every week who are just reaching out saying, you know, I found your videos, I've seen your story. I, you know, have followed you. I feel like I know you and they're looking to me for advice.

00:58:11:23 - 00:58:44:20

Christina Doherty

And there's, you know, who did you see like it? Where do I go? How do you get this imaging? And it's hard for me because I don't always have an answer. And I definitely don't have. I there's no one size fits all. And it's really a, it's a lie. It is because the one of the doctors who were on the scene when I started out.

00:58:44:22 - 00:58:45:06

Amy Wang-Hiller

Aren't.

00:58:45:06 - 00:59:00:02

Christina Doherty

On the scene any longer, or they have different approaches now. And, you know, a lot of people live out of country and they can't afford even people in the country can't afford it.

00:59:00:08 - 00:59:00:21

Amy Wang-Hiller

That's right.

00:59:00:21 - 00:59:23:19

Christina Doherty

That I've gotten. And that's something that I have to wrestle with a lot because, you know, I feel incredibly fortunate and lucky. I like, you know, that I only had to drive ten hours, 12 hours, 16 hours, depending on the doctor being. But, just.

00:59:23:21 - 00:59:55:19

Amy Wang-Hiller

I mean, it's just it is like. I mean, I think this is a problem, like, why I even start this is four stories, right? And everyone's story is different. You can so, like, you are lucky that you're around these surgeons. Some are not, but you're just one of the stories that, you know, like to be slightly different than others, and there's nothing wrong, and you don't need to feel like guilty or anything like that.

00:59:55:21 - 01:00:16:16

Amy Wang-Hiller

Yeah. And I think this is a great way to also show people that, you know, the importance to have more knowledgeable, surgeons and you know, that these kind of, like, knowledge needs to be shared around and needs to be accepted.

01:00:16:18 - 01:00:40:06

Christina Doherty

Right. I mean, at this point, like, I have a great surgeon right here in Boston. I live in Boston, and it is so nice. Like, I, I've never had this experience. I've. Yeah. Like if I'm having an issue, it's like, can you come into Mark. That's or a so it's so new to me.

01:00:40:08 - 01:00:45:10

Amy Wang-Hiller

Okay. Like next up I need to relocate to Boston.

01:00:45:12 - 01:01:16:20

Christina Doherty

Well, no, I mean, I don't. I wouldn't recommend it, to be honest, I I'm still doing a lot of traveling. And the problem is, is that I am now in a new place. So I am now in a place where if something goes wrong and I need surgery. It's much more understood because, my surgeon now is not an ETF surgeon.

01:01:16:20 - 01:02:03:16

Christina Doherty

He's an orthopedic. He is, I'm now working with the specialists in stable diffusion. Okay, so when people ask me now, like who I recommend, I have a difficult time answering just because I've had so many experiences with so many of the different surgeons. It's gotten harder for me, to be honest, to be able to say this would be a good fit for what you're dealing with, or this person would be a good fit right now because I have been through so much.

01:02:03:18 - 01:02:12:13

Christina Doherty

I'm I'm seeing orthopedic specialists now, and, like, if something goes wrong, I'm past the instability phase.

01:02:12:15 - 01:02:13:09

Amy Wang-Hiller

Yeah.

01:02:13:11 - 01:02:43:03

Christina Doherty

And now I'm just at, like, if something goes wrong, they have to fix like that part of my fusion or, like, put a new bolt in or whatever. But people who are new on the scene I'm feeling so bad for because I just, you know, there's so many different opinions and so many different things, and it's just people are really struggling to get a diagnosis right now because the wait lists are just crazy.

01:02:43:03 - 01:02:43:18

Christina Doherty

Yeah.

01:02:43:20 - 01:02:44:04

Amy Wang-Hiller

Yeah.

01:02:44:04 - 01:03:28:02

Christina Doherty

And all of this, you know, there's all these opinions and I'm, I'm like at a loss sometimes even within my own family, people are struggling with what I think are like pretty like pretty much instability symptoms. But it's hard to recommend to somebody to travel. And it's hard to tell somebody to put all of their eggs in one basket and to put all of their money in their hope and their time into seeing a surgeon who won't necessarily recognize instability.

01:03:28:04 - 01:03:52:00

Christina Doherty

And I was hoping that by now this wouldn't be a problem. So, like, it felt like when I started out that things were really looking up and there was like a lot of hope, and we felt like we had the answers and we knew what to do. And now it's just kind of the the waters are getting married a little bit.

01:03:52:02 - 01:03:59:02

Christina Doherty

I feel bad for people who are starting out their journey now, to be perfectly honest.

01:03:59:04 - 01:04:27:15

Amy Wang-Hiller

It is really difficult. I feel like to choose with surgeon and also recommend, like, I, I hear I actually got reached to buy a lot of weird, interesting cases, like they're not the one they're saying that don't go to the surgeon, but they are saying, I heard a lot of horror stories, so don't go to surgeons.

01:04:27:17 - 01:04:54:06

Amy Wang-Hiller

So, I'm just like, well, that's their experience, you know what I mean? Like, and especially, I think, to people who just start their journey have no one to believe that their symptoms and then to be valid. I feel like. I feel like it's not equitable. I mean, it's not a good thing, bad to recommend a surgeon like, you know, at least getting this.

01:04:54:10 - 01:04:57:19

Amy Wang-Hiller

There's symptoms to to be like validated.

01:04:57:21 - 01:05:25:20

Christina Doherty

Yeah. It's so amazing. I just remember like the first time that I, like I left the office and I had like my neck brace in hand and it was like, oh my gosh, that was so much information. But like, like just that feeling of, yeah, being validated at the end. Like having someone say, I understand what you're going through and I know why you're great.

01:05:25:20 - 01:05:55:16

Christina Doherty

And like, I mean, because there's always that self-doubt in your head that like, well, that's, you know, like I'm just making a big deal about it or, you know, I think especially with the tethered cord, like sometimes. And I know, like you really you really focus a lot on the occult, aspects. And it's like there's nothing harder than tethered cord.

01:05:55:16 - 01:06:21:12

Christina Doherty

I mean, you can see it on the imaging and yet still, when I woke up, I was like, anyone who went by, I was like, was it tethered? Like, because you like, convince yourself in your head that, no, like, they're going to get in there and it's going to be all fine. And like, you just were being dramatic, you know?

01:06:21:14 - 01:06:28:17

Christina Doherty

Yeah, I like I think it was probably in my head like maybe it wasn't tethered.

01:06:28:21 - 01:06:43:04

Amy Wang-Hiller

It. It's exactly what I said to my husband. Like he said, every surgery you going to write before you go in and you're still going to ask me, like, what if it's not?

01:06:43:06 - 01:06:43:23

Christina Doherty

Exactly.

01:06:43:23 - 01:07:02:06

Amy Wang-Hiller

Yeah. But like, yes, I am like more focusing on a quote aspect is because, not just not just like, you know, imaging. Right, but also tests and then, you know, things that are saying that, well, you should be fine. What do you mean you should be fine? I, I'm not fine.

01:07:02:08 - 01:07:22:24

Christina Doherty

I cannot tell you how many tests I've had, like how many, how much imaging I've had. And working with the neuro radiologist just to show that I was unstable, like to show that you're unstable in the thoracic area, is incredibly difficult. Especially when you already have fusions.

01:07:23:01 - 01:07:23:06

Amy Wang-Hiller

Yeah.

01:07:23:12 - 01:07:56:24

Christina Doherty

And when you're having severe symptoms. Yeah. Flexion, extension, MRI. I'm sure that you understand that is extremely difficult to go through when you're symptomatic. I have a vast history of passing out during them and then having to redo them, because it's and also, you know, when like I would have hardware break or something like that. We had to prove over and over that these things are happening.

01:07:57:01 - 01:08:08:23

Christina Doherty

So we have so many weird positions of me twisting and like just at being excited and it's it's torture. If they could just believe.

01:08:09:00 - 01:08:09:22

Amy Wang-Hiller

Yeah.

01:08:09:24 - 01:08:30:13

Christina Doherty

Like you're CentOS, but they have to catch it on imaging. And if I didn't have a team of doctors and the right surgeon. I probably would not be here today. Like they fought for me and yeah.

01:08:30:15 - 01:08:30:21

Amy Wang-Hiller

Yeah.

01:08:30:24 - 01:08:33:18

Christina Doherty

Thank God.

01:08:33:20 - 01:08:45:04

Amy Wang-Hiller

They got like you, you'd never really had someone say, well, so this is it's just functional, you know, and it's hard to prove.

01:08:45:06 - 01:09:23:20

Christina Doherty

Yeah. I and I think, you know, that's why we become so attached to our surgeons is because, like, if you go anywhere else, they think you're crazy. Yeah. And like any, like, instability. What? Like they don't understand. And it was hard enough trying to, prove to the insurance companies with this that what we were doing. I eyelid but I mean, it was hard enough for my doctor to believe it because he he had not seen.

01:09:23:22 - 01:09:51:10

Christina Doherty

Yeah I was I couldn't walk, I couldn't swallow, I couldn't breathe. And like when we like held pressure on my back it would stop. And so like they would brace me really tight. And I was a function for a while. And then it would just stop working. But if we just held it really, really tight, then I would stop and then they would let go.

01:09:51:12 - 01:10:17:03

Christina Doherty

And then I couldn't breathe and my diaphragm would go again. And so it was like I tried proving that to the insurance company. And like patients, parents pushed on their back. And so that's why we think that we need the district. You know, how it is with EBS and all the comorbidities. You don't just have one thing happening at one time.

01:10:17:05 - 01:10:35:16

Christina Doherty

Yeah, you have like 50 things happening and you don't know why. And they're all interfering. And, you know, the mast cell is a huge piece that just really complicates everything. Yeah.

01:10:35:16 - 01:10:56:03

Amy Wang-Hiller

But I, I'm, I'm glad this time I had a surgery. I didn't have my cell complications. I have all the meds and stuff. Yeah, it's it's really difficult if you go through a surgery and I have to deal with my cell was same time or GI symptoms, right.

01:10:56:05 - 01:11:26:00

Christina Doherty

Yeah, I, I've had a very up and down experience with my gi. I spent four years, about four years, only on a feeding tube. And then I was able to really incorporate food and then about a month or two ago, I had to go back and speak to. So it's like it's very up and down.

01:11:26:02 - 01:11:27:18

Amy Wang-Hiller

Yeah.

01:11:27:20 - 01:12:04:23

Christina Doherty

But I'm just thankful. I think that's the nature of VBS. Is that like as bad as it is and as bad as it can get, it can always get better. And I hope to be living proof of that. Yeah. There was a lot of times that, you know, it was touch and go for a while, and then we really just were able to find the next thing and the next thing and take those steps.

01:12:04:24 - 01:12:23:24

Christina Doherty

And it just felt like it still feels so grueling to just do that next one little thing. But in the end, I think, you know, it really shows, especially I think with physical therapy,

01:12:24:01 - 01:12:27:05

Amy Wang-Hiller

Because it's it feels.

01:12:27:05 - 01:12:55:24

Christina Doherty

Like the process feels so slow, but it's so important with EDS. Yeah. So like I would just encourage people not to be frustrated if like, all you can do is like, move your eyes. Can I did about a year of physical therapy where like most of my exercises were just eye movements and that was like all I could handle.

01:12:56:01 - 01:12:57:07

Amy Wang-Hiller

Yeah.

01:12:57:08 - 01:13:07:22

Christina Doherty

And I would get extremely sick after, you know, sometimes I would have a fever after, like, I would just like my autonomic system had to be completely retrained.

01:13:07:24 - 01:13:09:01

Amy Wang-Hiller

And.

01:13:09:03 - 01:13:38:08

Christina Doherty

You know, that just comes with some of, I think, the nerve damage in dealing with like, I, I don't think that people understand enough that we, we are spinal cord injury survivors. We are brain injury survivors, which things are not in a vacuum like it affects our entire system, you know, and like my pituitary gland is probably never going to work.

01:13:38:10 - 01:14:05:01

Christina Doherty

So my adrenals don't work. I just make strides for that. And because it was crushed under the pressure, you know? And so now I have a shot and I have a stent and like, my brain is suffered a lot of injury. Yeah. And you know, all of the crushing of spinal nerves caused a lot of spinal cord injury.

01:14:05:01 - 01:14:09:23

Christina Doherty

And I don't think that we give ourselves enough credit.

01:14:10:00 - 01:14:43:24

Amy Wang-Hiller

This is something that medical system don't look enough at is chronic spinal cord injuries or especially brain stem issues. Because brain spend is something that we often even my surgeon right now like I have a phone tell me like if I get more research paper about the brain stem like me Austin him because he couldn't find any besides traumatic brain injury which is very.

01:14:44:01 - 01:14:46:05

Christina Doherty

Yeah it is.

01:14:46:07 - 01:15:14:23

Amy Wang-Hiller

So I, I really love one of the I believe it was this, this genetic students like from the MRC like she posted recently. Like, you know, we we have a lot of twin instabilities. So we have stations. But don't forget a spot that's exactly right. Like, you know, we always forget about the most important thing, which is like the vital thing that supplies the nerves.

01:15:14:23 - 01:15:21:03

Amy Wang-Hiller

Like, you know, the, the central nervous system that supplies everything else.

01:15:21:05 - 01:15:53:22

Christina Doherty

Everything is affected. And I like I cannot stress enough to people that like, it's not just headaches, it's not just back pain. Like, that wasn't even on my radar building. I mean, like, if you had me list all my symptoms, like, the pain was so far down, it was more like, I can't see my vision is completely affected.

01:15:53:24 - 01:16:26:05

Christina Doherty

Like, I can't walk, I can't swallow, I can't hold food down. I can't use my hands. I'm losing feeling okay. I have pain like it just. I don't know, I don't, like, know the right word. It's just it completely disables every part of your body and every function of every system, because every nerve has to run through there.

01:16:26:07 - 01:16:47:14

Christina Doherty

But before it gets to where it's going. And just like explaining to people and people are like, well, I thought you already had surgery for that. And it's like I had one vertebra fuzed. It's like, like I have quite a few and.

01:16:47:16 - 01:16:50:06

Amy Wang-Hiller

Yeah. Or oh sorry.

01:16:50:08 - 01:16:51:19

Christina Doherty

Oh no no no.

01:16:51:21 - 01:16:54:08

Amy Wang-Hiller

It's oh yeah.

01:16:54:10 - 01:17:01:22

Christina Doherty

I had so many words and I don't know how to save them because I feel like it's important.

01:17:01:24 - 01:17:25:05

Amy Wang-Hiller

Yes, it is. And I, I can't believe like when you say that like it was about the spinal cord. And I just feel like even the radiologist will say no, it's just within normal limits. Like, I would ask literally every single person that I interview, I said, did you ever hear Within Normal Limits? And then how do you feel about that?

01:17:25:07 - 01:17:27:12

Christina Doherty

They scan.

01:17:27:14 - 01:17:41:00

Amy Wang-Hiller

Yeah, yeah. Or tests. Yeah. Tests. Things that just never really show exactly two wrong right.

01:17:41:02 - 01:18:19:01

Christina Doherty

And I can't tell you how many times I have said, you know, I've had this test so many times, and even now it's considered within normal limits. Now, I think that we should explore why it's changed so much. Like if I had something that was like borderline low for a million times, and then all of a sudden now it's borderline high, you know, I mean, who cares?

01:18:19:03 - 01:19:03:00

Christina Doherty

Like what? A normal limit. Exactly. Like, how did we get here? Yeah. And does that, can that indicate something? And like sometimes that has led to okay, more testing and then finally finding out what's going on. But it's it's definitely a battle. And I think that it never follows within normal limits. And I think that we never have like, we never really like, let's see, like I think with, like, the intracranial hypertension.

01:19:03:06 - 01:19:37:05

Christina Doherty

Yeah. Every doctor that I've spoken to who sees more exclusively EDS patients has said directly, yeah. No, we don't even we don't even consider it the normal limits when it comes to EDS, because EDS patients tend to be much more comfortable and at a lower pressure. So, like what might be borderline for a regular person is often much too high for an alert down.

01:19:37:05 - 01:20:07:06

Christina Doherty

Those patient. And that's the difference between seeing an Ehlers-Danlos specialist and just seeing a regular doctor. Yeah. I do feel like you have to be careful. You do have to vet your doctors. You do have to get second opinions because you don't want to fall into, you know, just only trusting somebody because they are Ehlers-Danlos literate. But it, makes a heck of a difference.

01:20:07:08 - 01:20:09:11

Christina Doherty

Yeah, yeah it does.

01:20:09:13 - 01:20:34:06

Amy Wang-Hiller

I feel like without seeing, eds specialist like often they would think, well, either you think too much, right? Or. Well, it's just a headache or bakery. Why why why do you think about that. That's like something more severe. Series or. Yeah, you had to do some twitch like abnormal movement. That's what I, my, my e.R. Like notes said.

01:20:34:08 - 01:20:37:04

Amy Wang-Hiller

And I was like, does that make.

01:20:37:06 - 01:20:42:16

Christina Doherty

You don't end up in the E.R. just because you're twitching? Nobody wants to be in the E.R..

01:20:42:18 - 01:20:57:19

Amy Wang-Hiller

Yeah. And, Amy, it's so funny how, like, somehow radiologists did normal limits. This scan shows clear, like, you know, because it's normal.

01:20:57:21 - 01:20:58:14

Christina Doherty

Right.

01:20:58:16 - 01:21:02:20

Amy Wang-Hiller

It's so much more important than our sign or symptoms.

01:21:02:22 - 01:21:27:09

Christina Doherty

Right? I know it's really scary. And, you know, the thing that really gets me, and I think, you know, we need more dynamic imaging because, like, I mean, the flexion and extension MRI is like that's a big that's a big step up. But we need to still do better. We need to have more fluoroscopy using and dynamic X-rays.

01:21:27:09 - 01:21:53:08

Christina Doherty

And you know, a couple of times we've had to like kind of come up with our own like positioning for the CTS because we wanted to catch what was happening. Yeah. When I was doing certain motions because EDS and a lot of other conditions, like it doesn't just present when you're lying still, like your symptoms are dynamic. Yeah.

01:21:53:08 - 01:22:05:12

Christina Doherty

And so if you say, well, when I'm standing up, I'm having this problem, what is he going to do to have you lie down and stay still?

01:22:05:14 - 01:22:06:16

Amy Wang-Hiller

Yeah.

01:22:06:18 - 01:22:11:01

Christina Doherty

It I mean, it's just it seems like common sense.

01:22:11:03 - 01:22:39:12

Amy Wang-Hiller

I mean, it's completely feel like common sense to us and the somehow my doctor hasn't really accepted, like, you know, vaccine station my age is they did I mean, yeah. So it may. But even to a normal human being, like, I don't think my dad has EDS, but even him, worse than that, I see. Okay, I got I was sleeping right this way, and it's certainly like this.

01:22:39:18 - 01:22:55:11

Amy Wang-Hiller

It's, here has the little shooting pain like he has a little bit neck issue, but, like, so. Yeah. So then I think it's really normal to imaging people in certain position that they have symptoms. Yeah.

01:22:55:13 - 01:23:19:05

Christina Doherty

It's it makes sense to me. But it's it's really unfortunate. And I think gravity just plays such a huge role in this condition as well. So like why are you still doing imaging lying down. You know why. Why it just it baffled.

01:23:19:07 - 01:23:42:04

Amy Wang-Hiller

Yeah I know more research like more more statistics like showing that this is really happening. Like, you know, with not EDS, maybe even normal populations that, you know, the standard MRI should never be the end of testing, right? Yeah.

01:23:42:06 - 01:24:04:20

Christina Doherty

Now, I always tell people, you know, it rules. Maybe you can rule something out, but like it doesn't rule everything in like or maybe like the opposite, like, you know, if it if it's positive. Yeah. Then. Okay, great. You found it. But if it's negative, I don't know if I trust it.

01:24:04:20 - 01:24:09:05

Amy Wang-Hiller

Still, I feel like.

01:24:09:07 - 01:24:13:01

Amy Wang-Hiller

Sometimes the upright part is still a little bit tricky. Like with.

01:24:13:04 - 01:24:22:01

Christina Doherty

Positions. Yeah. Yeah. It's yeah it's it's torture. So for the patient to go through because you're symptomatic.

01:24:22:05 - 01:24:22:12

Amy Wang-Hiller

Yeah.

01:24:22:17 - 01:24:47:19

Christina Doherty

But to stay still the Yeah. But yeah, it's hard and it's hard to catch things. I know with me, me, I was having this issue for like four years before we caught what was happening. And it was, because we thought the patella was just slipping and we couldn't catch it because every time I took a step, it made a snapping.

01:24:48:00 - 01:25:15:16

Christina Doherty

Yeah, noise. And it hurt and like, it would get really swollen and, like, turn like black and blue. And it was really severe and like, with every step, it was like click, click, click and swear. Like it must be the patella moving. So we kept pressing that and it didn't do anything. And finally we, we ultrasound did it while I was moving.

01:25:15:18 - 01:25:52:06

Christina Doherty

And it turns out that it was actually the fibula was dislocating and then snapping back into place every time I took a stat. Yeah, and really, it did some good damage to the, to the nerve in there that it was hitting every time and it was actually cutting off the blood flow. So that's why so swollen. And they had to fuze the bones together and move the nerve and their whole vasculature out of the way.

01:25:52:08 - 01:26:08:05

Christina Doherty

But it was like it took us four years because every time they did an MRI or an X-ray, it was fine. And it was actually the ultrasound techs who were at the here. Others.

01:26:09:01 - 01:26:11:14

Christina Doherty

They could actually see what was happening when it was moving.

01:26:11:16 - 01:26:33:02

Amy Wang-Hiller

Yeah. That's awesome. I definitely hear some of the, ultrasound things that to show like the blood flow, like jugular vein or something like that, like, I think, I think those are so good to, like, be able to prove like, you know, you have something actually on test this abnormal. Right.

01:26:33:04 - 01:26:58:17

Christina Doherty

And it makes, it makes the biggest difference to have a team behind you who's saying we understand that something's happening and like we are going to find out what it is and we are going to throw everything at it that we can to figure out what that is. When you find that team, hold them tight and don't let them go and tell me who they are, because I would love to see that again.

01:26:58:18 - 01:27:01:04

Christina Doherty

So I define that in medicine.

01:27:01:06 - 01:27:19:18

Amy Wang-Hiller

It is really difficult. And I feel like sometimes like you, you have a you have an active, advocate for yourself, right? But then you have a passive care team just like lay back and wait. We don't know.

01:27:19:20 - 01:27:29:14

Christina Doherty

Yeah. That's hard. It's hard it when you feel like you're just a number or like, they really just don't care that much at the end of the day.

01:27:29:16 - 01:27:58:10

Amy Wang-Hiller

Well, especially the symptoms and stuff, like, I can see how, like, this is a positive thing that to to feel like to look up to, like, healing, like maybe there's some hope, you know, like, as early as possible because I know there's a lot of mild cases of CCI, or like, you know, I think mild is still like it's damage to the brainstem and spinal cord.

01:27:58:16 - 01:28:17:02

Amy Wang-Hiller

Some people still have issues with walking, but believing to have some kind of functional thing. And yeah, you have kind of ticking bomb, you know, like you're not really getting that taken care of. Doesn't matter if it's seeing a PTO or doing infusion.

01:28:17:04 - 01:28:26:00

Christina Doherty

It's difficult. I'm like, I will be the first to say that. Like my opinion has changed over the years.

01:28:26:02 - 01:28:27:03

Amy Wang-Hiller

As.

01:28:27:05 - 01:28:52:07

Christina Doherty

Surgery, as you know, is not easy and it's not the cure. And like I think that people really think that like there's a that you can go and have surgery and then you're cured and that it's hard to.

01:28:52:09 - 01:29:30:08

Christina Doherty

I don't know, it's hard it's hard to say. Sorry. I really like it's so hard to, put into words how thankful I am. But at the same time, I think that, like, surgery is never anything to be rushed into. And surgery and Ehlers-Danlos is especially difficult. We're like, tend to respond really, really well to things or like really, really poorly do things.

01:29:30:10 - 01:30:01:23

Christina Doherty

And it's hard because like, it's hard to know which one of those two camps that you're going to fall into. But I, I just I always have a kind of a hard and fast rule of that. Like if it's like cry and cry cervical instability, like you don't mess with the brainstem. Yeah. To me it's just like I would I would highly recommend the surgery, but it has to be the right surgeon.

01:30:02:00 - 01:30:03:16

Christina Doherty

That's and.

01:30:03:18 - 01:30:04:10

Amy Wang-Hiller

It's.

01:30:04:10 - 01:30:16:09

Christina Doherty

You know, I think it's, it's worse to have surgery with the wrong surgeon than to not have it at all. But.

01:30:16:11 - 01:30:50:06

Christina Doherty

When you find the right team and, like, you really have, like, someone that you can put your faith in to, it's amazing the things that can happen. Yeah. And, like, I will never stop fighting for more, like, early diagnosis and treatment for people with clarity and genius. Everyone's ability at mental axial instability, tethered cord. I think those are the.

01:30:50:08 - 01:31:17:06

Christina Doherty

I mean, I would not mess with those like all of the other fusions I've had. You can question thing, you know, it it definitely was more of the pros and cons thing. But I mean, it's don't mess with that brain stem because you don't. Yeah. Always get it back. And it just it makes me so sad. I like look back and I'm like my poor little like, brain.

01:31:17:10 - 01:31:44:24

Christina Doherty

Like it was trying so hard. And I think we also were really feeling when it comes to aftercare, I think that patients need to understand that, like, yeah, it's not always going to all come back the second they wake up from surgery. And that's to be expected just to think like what your body has been going through.

01:31:44:24 - 01:32:02:06

Christina Doherty

Like it's it's almost amazing to think about those nerves that have been like, compressed for so long to, like, finally be firing again and like, your body is relearning. I mean, I it.

01:32:02:06 - 01:32:05:10

Amy Wang-Hiller

Is crazy if it's.

01:32:05:12 - 01:32:46:24

Christina Doherty

Like, there all it really does. And I think that like, there needs to be more understanding about like it's not over at surgery, like it starts at surgery. That's when the healing begins and that's when the magic begins. And like, you really need to put the time in with physical therapy and, you know, I think that like, one of the reasons that I was, like, so drawn to you, to your story is that, like you, you don't define yourself by all of this, but you're also not letting it go.

01:32:47:01 - 01:33:19:24

Christina Doherty

And I think that, like your love and your passions for music is just so beautiful. And I know that that is going to get you so far, and it's going to get you through this. But also it's like a tangible thing you can use to show people like, hey, I'm here. And despite all of this stuff that's happened to me like I am healing and I'm doing this and I am not letting this define me and what I love.

01:33:20:01 - 01:33:48:12

Christina Doherty

And I'm so freaking here that, like, I like, I just love that, because it takes and it takes and it takes and it takes away from us. And you were like, now not giving nothing. You know, my love of Violet and my love of life and my love of my like, you know, trying on cute wigs and stuff like that.

01:33:48:12 - 01:34:13:21

Christina Doherty

You're like, no, I'm not letting it take everything for me. And that's the magic. And that's what I feel like we have to be fighting for. And by putting yourself out there, I think it's just going to do so much good. You know? I'm like, sometimes. Sometimes the words just come out of my mouth and I don't. I know.

01:34:13:21 - 01:34:30:20

Amy Wang-Hiller

Right. No no, no. Just to let it go. Like, you know, sometimes like you said, magic, you know, happens like, I feel like, sometimes magic happens with words just like, don't really know where going, but then it's like it finds its way, you know.

01:34:30:22 - 01:35:04:03

Christina Doherty

I know, I feel like, I don't know, I just been in such a place in my brain in the last week. But you that it's just the words just kind of don't have a filter anymore. But like, you have to have these, you have to set goals. You have to have passion after. Because like I've, I've been in this game for a long time and I've seen a lot of people enter this game and.

01:35:04:05 - 01:35:40:20

Christina Doherty

Your expectations have to be at a certain place when you take on surgery. And I think we don't we don't support patients well enough after surgery. I think that we we create this idea and especially I mean, people have to fundraise and all of the stuff. So we create this idea that like this big build up to the surgery and like the big dent, you know, you wait years for this, you find the doctor finally, oh my gosh, you know, about all these symptoms.

01:35:40:20 - 01:36:19:21

Christina Doherty

And it's going to be better afterwards. And people leave their home countries and they have like their whole town is waiting for them when they come home. And I've talked to so many people and they're like, I don't know how to go home and tell them that, like, I have an I have to have another surgery because I have another area of instability or like, you know, I I'm still struggling with my swallowing since surgery, and it's hard for me to be honest about that part of my story, because there's been this huge buildup and everyone's expecting me to come home and be cured, and we all hope for that.

01:36:20:00 - 01:36:23:11

Christina Doherty

And I think that surgeons can sometimes feed into that.

01:36:23:13 - 01:36:23:17

Amy Wang-Hiller

Yeah.

01:36:23:21 - 01:37:12:04

Christina Doherty

And the aftercare is like, what a lot of us really need and we don't get it. And I it's just like the PTSD from this experience, the actual brain and spinal trauma, like I ended up in a rehab and I ended up on the brain injury floor. And it's from her being like, they must have just not had a bed anywhere else, like at the just, you know, then it took me years to understand that I had a brain injury and like, yeah, my physical therapist was like, you know, she was like, you are faking your way through more than you even know.

01:37:12:06 - 01:37:31:04

Christina Doherty

You know, here's a clock like, tell me what time it is. I, I can remember knowing how to read a clock, but I can't read it or, like, making change. Like, she was like, if I, if I gave you this many quarters and dollars, you know, and.

01:37:31:10 - 01:37:31:19

Amy Wang-Hiller

Yeah.

01:37:31:19 - 01:37:58:11

Christina Doherty

What if I like what when my change being I'm like. I have no idea. I literally like, I could even like make the thought process and it just I don't think that people understand what healing really looks like after this kind of surgery and that there are setbacks, and the setbacks don't mean that someone has failed. It doesn't mean that we failed.

01:37:58:11 - 01:38:04:22

Christina Doherty

It doesn't mean that the surgeon made a mistake or that they failed us in any way. It's just part of it.

01:38:04:24 - 01:38:34:17

Amy Wang-Hiller

I think that getting to the whole entire doctors who don't believe you, right. And then they might have the ideas of like, oh, we will see after surgery. So that means if it works, if you get better, if you don't, and often, like we said, I feel like this has to get into people's mind as like not just the eds, but normal human beings have ups and downs.

01:38:34:22 - 01:38:51:06

Amy Wang-Hiller

You have days that you feel really crappy and there's days you feel better. And that doesn't mean the fluctuation is means that, oh, I have an anxiety or, you know, I have a functional D or something like that. I.

01:38:51:08 - 01:39:21:10

Christina Doherty

I have a huge problem with functional diagnoses, I really do. I have never come across one that was truly, truly just functional on. It's crazy to like take it like take someone's whole journey and to look at it and see that they have valid medical diagnoses and then take one little part of it and be like, no, this part is in your head.

01:39:21:12 - 01:39:45:19

Christina Doherty

It makes no sense. And it's like, I know that it's functional. It's not in your head in the way that like, it means you're faking. Like, I understand the implication is that, you know, your body is so overwhelmed that it that your brain creates symptoms. But it it just doesn't it doesn't gel with me.

01:39:45:21 - 01:39:47:07

Amy Wang-Hiller

It did it.

01:39:47:09 - 01:40:14:00

Christina Doherty

No sense. It's just sounds like a really fancy way to write. We have no idea what's going on. And I just it's the ego again, instead of saying, I don't know, like, doctors aren't allowed to say that they have to send you home with something. So if they can put an diagnosis next to it, then it's got to be functional.

01:40:14:02 - 01:40:21:06

Amy Wang-Hiller

Yeah, they have to have a, with where the CPT code. Right. Yeah.

01:40:21:08 - 01:40:53:13

Christina Doherty

Yeah. See if he I don't know. Yeah. It's really disappointing. And I have worked with functional doctors before and I have had a lot of good things happen. You know, working with the functional doctor is a fantastic experience. If you and the doctor both understand what's actually going on when you enter into it. Like at the power of the mind is incredible.

01:40:53:15 - 01:41:21:20

Christina Doherty

And like, please, please, please, like learn how to harness the power of the mind. It will only do well with your physical health. But oh my goodness. Like do not give up on it. Like if you know that something is happening that's physical. I don't give heart and I see yeah, keep it, keep finding it. Keep doing your research.

01:41:21:21 - 01:41:50:01

Christina Doherty

Keep talking to people. I have seen some really amazing things come from people who just didn't give up. And I think you're you're a really great, you know, picture of that as someone who just didn't give up and you didn't accept, you know, what you're being told. And I think that, like, you know, the world is your oyster.

01:41:50:01 - 01:42:06:19

Amy Wang-Hiller

Now, it's it's hard to to accept. It's someone to tell you, like, hey, your pants just like functional your your spasms and all the symptoms. And I was like.

01:42:06:21 - 01:42:39:04

Amy Wang-Hiller

Wow. Yeah. And then then they said, well, the part of it is the the be okay. So, my take on when your, what would you're saying is that I do believe the same thing that I feel like sometimes people say, oh, there's always like, or region like, you know, the, the actual, pathological side of it, but then, like, you still can have two at the same time and then like, and as, like too often, always functional.

01:42:39:09 - 01:43:16:15

Amy Wang-Hiller

So then because I went through the potential and because I was being told that often that dementia imaging was too small to see, that's why we would do a bowl potential. And I'm just like, all right. So I just don't get why people accept functional as the comorbidity. Your other diagnosis of neurological disorder. Because. Because imaging is normal or imaging is clear out that part when you have symptoms.

01:43:16:17 - 01:43:28:13

Amy Wang-Hiller

Then I'm just like, why? Why can it be too small that data to detect it's the technology isn't photo enough that we're showing you everything.

01:43:28:15 - 01:43:28:22

Christina Doherty

Right.

01:43:28:22 - 01:43:58:05

Amy Wang-Hiller

Like the 20 years now. Like we're still doing MRI, thinking that it will show everything, but it it might not, you know, like that's something to think about. But I do believe the mind is powerful. Like I actually, just recently read, article about how the people who have spinal cord injury and when they fire their brain is much brighter.

01:43:58:05 - 01:44:18:21

Amy Wang-Hiller

So like the cortical is much brighter. And the reason is because they try to guess to the narrowing the, the damage that it is to have a little bit movement. So like your brain is like ten times power for an hour is.

01:44:18:23 - 01:44:22:13

Christina Doherty

Hey maybe that's that's the problem. We're just.

01:44:22:15 - 01:44:32:04

Amy Wang-Hiller

Yeah. We are like you know, it's it's it's the opposite of like both being functional which they said cortical doesn't really sending out signal.

01:44:32:07 - 01:44:39:24

Christina Doherty

You know so hypersensitive nerves and everything.

01:44:40:01 - 01:45:07:21

Amy Wang-Hiller

Yeah I yeah it's it's also very interesting that how the way that I did evoked. Sure. And and they said something about oh you're for the core stood it up. It's good thing but that you're subcortical descent ready to like much like that the so much. And now I think back I'm like yeah because my brain's then damage to the.

01:45:07:23 - 01:45:09:07

Christina Doherty

That would do it.

01:45:09:09 - 01:45:26:08

Amy Wang-Hiller

Yeah. Well it's still resilient enough. That's in some signals to the brain. You know, you're you're your body is trying so hard to to giving the signals in the trying to let you know. Yeah. To be resilient.

01:45:26:10 - 01:46:01:10

Christina Doherty

We really I mean, like, I just people say to me like, you know, when people say things to me about being disabled or like, you know, just, you know, they kind of they say like, well, why why don't you feel like, why me? You know, and I'm always like, well, why not me? And like, I don't feel like my body has failed me.

01:46:01:12 - 01:46:25:16

Christina Doherty

Like, I feel like my body is fighting so hard for me. Like I feel like some days I'm just so thankful to my body. It's not for, like, the failings, but for the triumphs and for the things as well. Like I was dealing with all of that and like, we still, like, made it through you know, like all of the things, like just pushing through and you think, what?

01:46:25:16 - 01:46:50:10

Christina Doherty

Like what was happening inside of you when you're dealing with that, it's like, well, you know, the body is so, you know, like the neuroplasticity. It just the way that it like rewires everything. I mean, like they moved that whole nerve in my leg and that's it's been such a journey of like the nerve, nerve figuring out it's now in a new spot.

01:46:50:12 - 01:47:09:01

Christina Doherty

Yeah. Like you touched one part of my leg and I feel it. And the other side, because that's where the nerve used to be. And like, now, like, years down the line, I actually, like, grew back up some of the bone they had to cut out. And like my nerves have completely rewired.

01:47:09:03 - 01:47:10:17

Amy Wang-Hiller

And it's just it's.

01:47:10:17 - 01:47:42:18

Christina Doherty

Amazing what our bodies can do. Like learning to eat again after, like, you know, for years. I mean, it's a process, but like, being able to, you know, I it's it's amazing. The body's amazing. And I think that we do need to harness the power of our brain to help us to heal. But, it's, you know, it's used against us at this point.

01:47:42:18 - 01:47:48:10

Christina Doherty

I think there's these functional disorders. I.

01:47:48:12 - 01:48:15:07

Christina Doherty

It just it doesn't make sense to me for somebody who has like, real, like chronic issues to also have a functional diagnosis in the way that like, you know, I know that a lot of areas people were like diagnosed with fibromyalgia and a lot of people with GI issues, it was just IBS. Like, these are just like diagnoses where it just gets thrown in.

01:48:15:09 - 01:48:17:22

Amy Wang-Hiller

Whatever. It's not in the box.

01:48:17:24 - 01:48:34:24

Christina Doherty

You know, some people have these things, but like, I think that when you have a real diagnosis like this, like have something on the side like that, it's it, it it doesn't make sense. So I, I'm fighting against like, you know.

01:48:34:24 - 01:48:36:16

Amy Wang-Hiller

Yes.

01:48:36:18 - 01:48:58:11

Christina Doherty

And also these diagnoses are being handed out by people who have just met you, like in an e.R setting, who have, you know, somehow have the power to overrule a doctor who's been seeing a patient weekly for like ten years. And I just think that it's an abuse of power and it needs to stop.

01:48:58:13 - 01:49:23:23

Amy Wang-Hiller

That's right. I really do think so. Yeah. So, like when you said something about the E.R., I appreciate that. This is something I'm fighting for as well. And this is one of the podcast reason why we also started the whole project is to see if there's some changes that can be made that prevent, like, you know, the first line of diagnosis like this and I.

01:49:24:01 - 01:49:26:14

Christina Doherty

I hope, I, we hope.

01:49:26:16 - 01:49:51:19

Amy Wang-Hiller

Yeah. I mean, isn't that right? Like we could have like no multiple differential diagnosis. Besides that, you haven't really ruled that much yet. You haven't even looked at the upright MRI. And but they don't really think that as a consideration of what's right, what's what's going round was pathological.

01:49:51:21 - 01:50:29:16

Christina Doherty

So yeah. And the second it's put out on the table, it just trumps everything else. And it, it really I mean it's like a big black bar. In your medical file and it's completely, it's really ruining the care for so many people. It's, it's completely it's it's completely an abuse of power. It really is. I think the ego I mean, just the lack of even being able to request a second opinion, it just makes me crazy.

01:50:29:16 - 01:51:09:12

Christina Doherty

And I've been, you know, I, I see this as someone who works with people as a medical advocate. And also, you know, I work with end of life patients as well, which is something kind of new to me. And I'm kind of newly becoming certified to, you know, walk along people at that end of life journey. And, and this is probably like off topic and I don't know, but, it's just all the all week I have been on the phone with people fighting doctors who are.

01:51:09:12 - 01:51:11:08

Amy Wang-Hiller

Just.

01:51:11:10 - 01:51:20:21

Christina Doherty

Telling people that it's functional or. I've just it's been a long week.

01:51:20:21 - 01:51:29:19

Amy Wang-Hiller

No, it's okay. I just I just feel like this is really important to actually mentioning because I feel like.

01:51:29:21 - 01:51:30:11

Christina Doherty

I can.

01:51:30:12 - 01:51:31:16

Amy Wang-Hiller

I always stop.

01:51:31:18 - 01:51:33:16

Christina Doherty

And think about how to put it.

01:51:33:18 - 01:51:36:02

Amy Wang-Hiller

Yeah. Put it into visible.

01:51:36:04 - 01:51:47:05

Christina Doherty

And sound bite at this point because it just and so overwhelmed by like it is the new thing.

01:51:47:07 - 01:52:09:19

Amy Wang-Hiller

Mean it's a new global issues. It's not just nationwide. And I we tend to recognize that this issues really severe and that many people being put into, like you said, the end of life and they don't really get any treatment and a cure and just more medications. And you know how bad it is, was brain stem and spinal cord.

01:52:09:19 - 01:52:23:02

Amy Wang-Hiller

And it doesn't really come back that easy for years. And if it's if it's the injured, repetitively for years that delayed it with treatment.

01:52:23:04 - 01:52:52:02

Christina Doherty

Yeah. Yeah. I mean, I had a doctor, who was so wise and he said to me, you know, you know, it took 4 or 5 years for you to get here, and it's going to take 4 or 5 years for you to get out of this. You know, like he said, you know, it's just we can't expect things to come back immediately, if at all.

01:52:52:04 - 01:53:16:08

Christina Doherty

But, you know, he just said, you know, you got to be patient. Took you four years to get here. It's going to take you at least four years to get out of here. And I just remember thinking, oh my gosh, I don't even know if I can live four more years like this. And you do, you just do them day by day and you find little ways.

01:53:16:12 - 01:53:42:24

Christina Doherty

I mean, I can't. It's like looking back on my journey and just thinking like, oh my gosh, like, I like the thought of using a walker or wheelchair or a card or a feeding tube or oxygen, like all of these different things that have been something that I've had to use seemed like such a huge deal. And it seemed like the end of the world.

01:53:43:01 - 01:53:48:07

Christina Doherty

But then so fast, like, you're you just get used to it.

01:53:48:09 - 01:53:51:08

Amy Wang-Hiller

Yeah. It's just it's.

01:53:51:10 - 01:54:01:07

Christina Doherty

Part of how you go through life and, you know, you just got a rocket.

01:54:01:09 - 01:54:03:17

Amy Wang-Hiller

Like, you adapt to the new normal.

01:54:03:19 - 01:54:06:15

Christina Doherty

You embrace it. Yeah. Because you.

01:54:06:15 - 01:54:07:12

Amy Wang-Hiller

Know.

01:54:07:14 - 01:54:15:00

Christina Doherty

What might seem like a decline to some people is actually, like a really big step up to a lot of us.

01:54:15:02 - 01:54:41:04

Amy Wang-Hiller

Like, to me, at this point, I don't even think about, like, any healing or anything, but I'm just like, yeah, I'm just going to go through the day. But like, that's all key as well. But the thing is that you don't want to give up hope and thinking that, oh yeah, it's my brain broken. Like, yeah, yeah I think the amount of diagnosis was it's enough and it's just a little bit out of proportion.

01:54:41:06 - 01:54:46:12

Amy Wang-Hiller

And out of the norm to think about how these two are related.

01:54:46:14 - 01:55:26:00

Christina Doherty

Yeah. I mean, I can say that within my own family, we have struggled with, for the diagnosis. My cousin, she is two years older than me, and she was given an F f n d diagnosis, even though her main diagnosis was Ehlers-Danlos and, shogren and mitochondrial involvement. And like, she crashed completely about two years ago and is now in a power chair and almost, you know, she can, get back and forth to the bathroom and stuff like that.

01:55:26:00 - 01:55:54:08

Christina Doherty

But, like any, any kind of physical exertion, like she'll sleep for like a day or two and, like, completely collapse and, you know, this was all of a sudden that this came on, after, you know, many, many, many years of dealing with just like, EDS and my own children. And so, you know, she had this horrible crash and she was in the hospital getting help.

01:55:54:08 - 01:56:18:19

Christina Doherty

And then all of a sudden, like, neuro came in and then psych came in and, slapped an f n d diagnosis down. And since then, she just lives from a hospital bed in her power chair. And just has carers, and she just feels like literally all of our doctors have given up on her.

01:56:18:21 - 01:56:32:19

Amy Wang-Hiller

So many people are told to only will get better if you truly believe it, but it feels like a cult. That's when people say you have to truly believe it to get better.

01:56:32:21 - 01:56:54:16

Christina Doherty

Yeah, and I mean, I've seen that. I mean, I grew up in like religion and stuff like that, and I've had people, you know, say like, you know, you're not praying hard enough if you're not healed. And it feels very much like that. You know, and I've also seen like, you know, there's like the whole other side.

01:56:54:16 - 01:57:13:05

Christina Doherty

There's like the people who tell you, like, you're not taking enough turmeric or you're not meditating enough. And it's just like, you know, you really can't do anything right without like, people always having their opinions. But like, now we've run into the medical version of that.

01:57:13:11 - 01:57:14:04

Amy Wang-Hiller

Yeah.

01:57:14:06 - 01:57:40:11

Christina Doherty

We can't get past that. Like, you know, if you have if you have an F and D label, all of a sudden you start to lose all of your care and all of your help. And it's it makes no sense because she and I are very similar and we are really dead, and there's absolutely no way that it isn't genetic.

01:57:40:13 - 01:58:30:02

Christina Doherty

Yeah. And because she had a history of some psychological things in her chart, she was viewed differently, even though I have the exact same patients. I have the exact same doctors as my cousin. I had the exact same diagnoses as my cousin. And because she walked in to an ear and somebody was on call that day who decided that this was functional, her medical care had been completely derailed to a point where I'm not sure if her body is ever going to be able to recuperate and to undo the damage that's been done.

01:58:30:02 - 01:58:58:07

Christina Doherty

She just had tethered cord surgery, but she had a very difficult recovery because she's had many more years of damage and many more years of neglect. And that's what this is causing. That's what functional disorders like, doctor, they just don't think twice. They just send you home with something because they need to put a code next to something for the insurance.

01:58:58:09 - 01:59:36:14

Christina Doherty

They'll think twice about it, but they are derailing the medical care of somebody who could possibly lose their life because something is being messed, something physical, something structural, something true and real is happening and it's being ignored because they're being told that this is psychological and that is not okay. And I will fight against that until I can't fight anymore because it's not fair.

01:59:36:16 - 02:00:03:15

Christina Doherty

And I think that they're profiling people. I think that they're racially profiling. I think that they're profiling people by how they look, what color their hair is, what color you know, their weight, their piercings. Like, I think that they see someone come in and they've already made up their mind. Yeah. And it's damaging. Yeah. So keep that in mind.

02:00:03:17 - 02:00:20:06

Amy Wang-Hiller

Yes. I'm just really, really glad that people are on our side and then noticing that and then recognizing just how damaging this is and this how the system has been become, to the point that we cannot ignore anymore.

02:00:20:08 - 02:00:52:12

Christina Doherty

Right. It's it's so bad. It really is. And it's like it's so hard to explain. Like, like, no, my PTSD is not causing my physical symptoms. My PTSD is from the way that I've been treated because of these symptoms. Like, it's just it's unbelievable. Like I go into thing and I'm not afraid about the procedure or the pain or the surgery.

02:00:52:14 - 02:01:14:01

Christina Doherty

I'm afraid of the people doing. And it shouldn't be like that. Yeah, it's it's always like, you just don't know who's going to be your nurse that day. You don't know who's going to be your doctor that day. And like the rest of your life, could depend on that.

02:01:14:03 - 02:01:15:03

Amy Wang-Hiller

Yeah.

02:01:15:05 - 02:01:43:10

Christina Doherty

That's terrifying. Those experiences for getting me this far, you know, even when I'm like, oh, you know, maybe that surgery was not exactly what needed to happen or, you know, this needed to be done or that needed to be done. It's like, well, it just it got me to the next thing you know, like, I yeah, I owe my life to all of those things.

02:01:43:12 - 02:02:08:02

Christina Doherty

And yeah, maybe it caused other problems, but I'm here today getting the right treatment because, you know, it bought me a few years. And sometimes it's just like it comes down to buying yourself a little bit more time. Yeah. And we have to be thankful for that part of the journey as well, even if it's hard.

02:02:08:04 - 02:02:34:02

Amy Wang-Hiller

Yes. Yeah. That's great. To end this episode, and also I want to also say thank you to my surgeon, actually my surgeons, although, you know, things are were not turned out that great. Sometimes I'm and it needs to happen for the next thing and to, to get better. So yeah. Thank you so much for joining us on today's episode.

02:02:34:06 - 02:03:08:04

Amy Wang-Hiller

And, you know, a special thank you to our guests today, Christina. And we shared their, really amazing stories with us. Remember, whether you are a patient, caregiver, or health care professional, your voice and advocacy are crucial in improving the health care system and supporting those with hidden diagnosis. If you enjoy this episode, please subscribe, rate and leave a review.

02:03:08:06 - 02:03:40:07

Amy Wang-Hiller

Your feedback helps us reach more listeners and continue to share these important stories. You can also follow us on social media for updates, resources, and the more inspiring content at Hidden Diagnosis. In fact, until next time, keep advocating for yourself and others and stay tuned as we continue to uncover and understand the reality of the undiagnosed or underdiagnosed conditions.

02:03:40:09 - 02:04:15:07

Amy Wang-Hiller

Thank you for listening.