Have you ever been dismissed by a doctor and ended up having a serious medical condition? Erika Liess’ story is all too common. She shares her experience with Chiari malformation, the frustrating journey to get diagnosed, and the amazing support she found online and with Angel Flight East. This episode is a must-listen for anyone who has ever felt unheard by the medical establishment. Erika's story is a powerful reminder that you are your own best advocate for your health, and there is hope and support out there for those facing chronic illness.

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Watch the episode here

Listen to the podcast here

We have a passenger named Erika.

Thanks for having me.

Thanks for joining us. Do you want to start by telling our readers a little bit about your situation and what led you to Angelic Ladies?

Chiari Malformation

I started having a lot of weird, random symptoms that didn't make a lot of sense. I was seeing my primary care doctor and constantly felt I was complaining to him. This weird neck pain came out of nowhere. All of a sudden, this weird shoulder pain came out of nowhere and now I'm tired. Why am I so tired? I go to bed early. It seemed all these weird symptoms kept adding up.

Everyone was saying, “I don't know.” I had some spine surgery in the past. I think they thought that it was more of a degenerative-type thing happening with my neck and my shoulder. “We'll try some injections and see how that goes.” One day at work, all of a sudden, I felt my heart racing. It felt like I couldn't breathe. Luckily, I went to school, so I went right to my school nurse. She hooked me right up to all the monitors and said, “Your heart rate's sitting in the 130s. That's not good. You got to go.”

 

 

I called my primary, and I went right to him, sends me to the ER. They said, “Yes, something's going on. You're not in imminent danger, and you're not having a heart attack, but for some reason, you have this elevated heart rate. We don't know why. Follow up with cardiology.” There goes another weird, random symptom that has no rhyme or reason. The cardiologist was great. She did every test under the sun, but unfortunately, still no answer.

It was left with what I think she called inappropriate sinus tachycardia, which means elevated heart rate for no reason. I continue to live on and do all of this stuff. My face, tongue, right side, arm, and legs started to numb. I think when you start saying the word numb, people start taking it a little bit more seriously or thinking there could be some neurological issue happening.

My doctors at Main Line Spine said, “We think you should go to a neurologist and get an MRI, make sure you don't have MS.” I said, “Okay.” It takes months and months to get in to see a neurologist. Luckily, my primary said, “Don't worry, I'll order the MRI for you and then if it shows anything, we'll go ahead and send you to a neurologist.” I said, “Get the MRI done.”

MRI comes back and you know how nowadays, with my chart, you get all your stuff before your doctor does. There I am being Dr. Google. It does have a finding and it wasn't MS. What is this? It wasn't called anything. It said that your cerebral tonsils are five millimeters past the foramen magnum. Whatever that means.

I am Googling what does this mean. This is a holiday weekend, so I am days and days away from even getting a phone call from somebody. I google and the first thing that pops up is the Chiari malformation type one. I started researching and researching. Something I'd never heard of, but the more research I did, every single weird symptom I had was all a symptom of this Chiari Malformation.

I continued to do my research. My doctor's office called, and they said, “Your MRI is clear, there are no issues, and you're fine.” I said, “Thanks for that, but I'm not sure I agree with you there. Did you see what this is? The first thing I google is this.” They said, “Go ahead, go see a neurologist.” The more and more research I did, they said, “Don't go to a neurologist. Neurologists know nothing about this condition. They usually are very dismissive of this condition and are no help with this.”

I joined all these Facebook groups and had to start advocating for myself, doing everything on my own, and figuring out what this is and how you treat it. What if it goes untreated? More and more symptoms started to come out. Severe headaches and severe pain at the back of the head. My vision started to have issues. If I turned to the right or the left, it would be blurry. I couldn't focus anymore.

If I was looking at a computer and I looked away, it would all be blurry. Noise and light sensitivity, these things kept coming and coming. There's got to be something more to this. This can't be something that, “It's no big deal. You live with it. It's okay.” I kept doing my research and we were in a suburb of Philadelphia.

I think Philadelphia has got to have some of the best neurosurgeons and hospitals. I'm trying to find someone who specializes in Chiari, someone who knows what this condition is and knows how to treat this condition. I find somebody at Jefferson and I think, “Great, here we go. We're going to get some answers.” I went to Jefferson and got no answers. I get no help. I get dismissed.

That was the start of feeling completely alone in this journey, completely frustrated and not knowing if I was ever going to get any help, any relief, or get anybody to truly understand what I was feeling and going through daily. He looked at my MRI and he said, “Technically, it's a Chiari, but it's only five millimeters. It's not bad enough to be causing any of your symptoms.” I replied, “None of my symptoms?” He said, “No, go see a neurologist.”

What kind of doctor was he then?

He was a neurosurgeon, and you think you're seeing someone who specializes in this. I left there completely in tears, telling my husband that I knew this was what was going to happen. I felt this was what was going to happen and that this was going to be a battle. This is either I'm going to have to fight this battle hard or I'm going to have to live with all of these symptoms and then live with them while getting worse and worse and potentially losing my sight, the ability to use my arms, my legs, and become paralyzed.

You read all of these things now that happened to these people. I joined probably five different Facebook groups for Chiari, which was probably the best thing that I did to have something that's not known. You tell somebody, “I've never heard of that.” Neither have I until I had to spend my whole life researching it. While being on all these boards, you find out who these top doctors are.

There was a doctor in Wisconsin, a doctor in New York City, and then a doctor at UPMC in Pittsburgh, Dr. Friedlander. He was listed as one of the best in the country. Can I even get in to see the best in the country? Will I even be able to see this guy? For a little while, I gave up for months and months. I initially found this out last July. I was right on July 4, 2023. I gave up and I didn't reach out to Dr. Friedlander's office until January 2024. I figured this was going to be a long process.

I sent all my records in. The office was super easy to work with. They said, Yes, we'll request all of your MRIs.” I sent them everything in, all of my reports. They got everything. I think within a couple of days, the office manager called and said, “We're going to schedule you an appointment.” I got in. I think within two weeks of them calling, I was in seeing him.

I thought that it was probably something that was not good. If you're getting in with somebody that good, that quickly, it probably isn't the best thing. My appointment with him was the complete opposite of what I had at Jefferson. I saw him and right away, he said, “Yes, you're a perfect candidate for surgery. , if you do not have the surgery, you're going to continue to get worse.”

With this condition, they talk about when your tonsils are going down into this base of your skull. They press up against your spinal cord and your brainstem. When that happens, everything gets tight, and your spinal fluid can't flow the way it should. All of your other limbs and things are affected because everything's being pushed in. I said, “Do you need another test to see if my flow is blocked?”

He replied, “I don't even need a test to tell that your flow is blocked. I know that it's blocked by looking at your MRI.” I had some work issues with time off from when they were trying to find all the cardiac issues. I said, can I wait for six months to get this done so that way all of my short-term disability is back in play. He said, “No, absolutely not. You can't wait that long.”

It went from being a, “Meh,” to a scary appointment of, “No, it's bad enough that I'm not comfortable with you waiting. This is something that you need to have done and you need to have it done now.” As opposed to somebody telling me, “No, nothing's coming from this.” It was a very interesting journey. Luckily, I think my journey was a lot shorter than some others. I think that I was very lucky to have Dr. Friedlander.

Granted, he's far away in Pittsburgh, but I'd rather travel and do what I need to do to see one of the best people. I'm thankful that everything moved so quickly with him. If I didn't reach out to him, I don't know what would be happening right now. I don't know how bad things would have gotten or continue to have gotten if I didn't find him. Very thankful I did. I have no trust in our medical professionals now.

I was going to say, what if you listened to that first doctor and went home and say, “I'm going to have to manage my symptoms and live with them.” The fact that you advocated for yourself and he saw that it was a little bit of an emergency for you to get the surgery, thank goodness you were your advocate.

I think I've learned that with medical professionals today, not that I think any of them ought not to help people. I think that unless you are this clear-cut textbook, “This is what I've learned.” “Yes or no? You can check boxes.” If you are more of a complicated medical case, it's because they don't want to take the time to dig deeper or look further or even say, “Listen, this isn't my expertise. I don't feel comfortable making that call.”

Something like that, but to flat out say it and to say it was like, “No.” I left there in tears and thinking to myself, and I let it go for months and months. Who knows what could have happened if I said, “Okay, I'm now stuck with this for the rest of my life, and this is what's going to happen.” At that point, you do feel defeated. You feel you're going to give up because you don't have anything left in you to fight at that point.

Luckily for those Facebook forums, those people have a lot of fights and they tell you to keep on fighting and they get very angry. I think it helps when you have people who know what you're going through and say, “No, you need to fight for yourself. You need to stand up for yourself and get this taken care of because it's not something you hear about every day. I'd never heard of it until I had to deal with it.

Finding Angel Flight East

That's such a crazy story. Was it Kelly Clarkson who wrote that song Because Of You? Instead of being a bad boyfriend, it's like, “Because of you, I found Angel Flight East.” How did you find us now?

The funny thing is I found you guys from watching a podcast of yours.

I think it was Christie. We love Christie. She is the best.

I'm going to go to dinner with Christie on Friday. I'm very excited because I get to meet her in person. I've talked to her on the phone with her helping with all this, but she's a very close friend to one of my close friends. That close friend's mother-in-law posted Christie's video, which she had linked to your podcast.

I said, “Let me watch this.” one morning at work, I watched the podcast all the way through and I called Lori and said, “Can you get a hold of Christie and ask her if they would be able to fly me to Pittsburgh?” I was talking to Christie within minutes and she said, “They absolutely would. My God, they're the best.” From there, I was then talking to David and getting everything done. It was the easiest, most seamless thing I've ever encountered in my life. I was like, “I will do the podcast.” This was the absolute reason how I found you guys. I would do anything to help you to help other people.

That's what we always say. Unfortunately, we find that so many people have no idea we exist. Sharing our story on social media or the podcast makes such a difference because we're a pretty small staff and we cover 14 states. To be everywhere, we cover all the time is pretty much impossible. Having people out there sharing our story is so incredibly helpful to us.

 

 

That is exactly why I said, “Yes, I will do it.”

How were the flights with us?

The flights were all good. Very seamless and easy. There was a little panic two days before surgery because I had to fly into Pittsburgh the day before my pre-op appointment. They did all my pre-op the day before. I was flying in, I think, on a Tuesday, pre-op was on Wednesday, and the surgery was on Thursday. That morning, Earl called and he said, “I can't fly because of the weather.”

We're getting ready to walk out the door. That was my biggest fear. Driving to Pittsburgh wasn't my biggest fear. It was driving home after this major brain surgery, “How am I going to survive?” David luckily called me right after I got off the phone with Earl and he said, “I'm on the way to the office. I'm in the car. I'll be there in 30 minutes and I am going to do everything I can to get you another pilot.” I said, “John, let's get ready. There's no way he's going to find a pilot on such short notice. No.”

David calls I think within three minutes of being at work and says, “I've got you another pilot.” I was like, “My goodness.” That was our very first experience. John and I always joke about David. He's a miracle worker. I don't know what he does. I can see his face, but it's instantaneous. He's like, “Yes, I got you one. No problem.” The flights have been the easiest. The pilots have all been so sweet, amazing, and lovely. I couldn't ask for a better experience.

Luckily, I'm not claustrophobic. I'm not afraid of small spaces and things like that. The flights were all pretty smooth and pretty easy. On my way home from Pittsburgh after surgery, we flew with Earl. He told us that he was scheduled to take us back. He was still able to bring us back. We did fly with Earl on the way home and it was easy with a tiny bit of turbulence, but he was flying us at a certain height to make sure that it was the least possible.

I think the pilots were more nervous about flying me than I was about flying, with it being a brain thing. I think they were so concerned. I’m like, “No, the doctor said it's fine.” We checked again with them when we left the hospital, and they said, “Yes, no worries. It's fine.” I think they were all so concerned with pressure in the head and the turbulence. I'm fine. He's a good med for the plane ride. We're good.

That is insane. I would hope that I would have that spirit after brain surgery, but I cannot say that I would, but at the same time, how many times would you ever think to be in that situation? Never. How common of an issue is this?

Undiagnosed

I honestly think it's more common than people think it is. It's funny because I can't remember who I was talking to. That's one of the issues. I feel I have early-onset dementia. My memory and my cognitive ability are so bad now. I hope that that comes back after surgery. I was talking to somebody about it. As I was telling them about it, they knew exactly what I was talking about because they said a friend's son had it.

My cousin's husband had it and had surgery in New York. I was thinking, “Is this more common? Is it not?” You see the amount of people on these Facebook posts, boards, and forums. It seems a lot of people are going through it. I think the sad part is so many people have the same situation that I had, where they go to a neurosurgeon and they're completely dismissed.

They have all of these symptoms that I had, some of them have even more symptoms, some have less, some have different, but they have the same types of issues. I think it's more common. I don't think that there are a lot of people getting the help that they need for it, is what my gut is telling me. I know Dr. Friedlander, who I see, again, as one of the best, and he sees people from all over the country. He does surgery twice a week and he always seems to have his six people a week to operate on.

"There's not a lot of people getting the help that they need for Chiari Malformation."

I feel when you put it that, I guess it is pretty common then because six a week for 52 weeks, that's a big number.

We're not good at math here.

I think it's 300 and something.

I'm not good at math. Numbers are not my thing anymore.

I either embarrassed myself or impressed myself, but I think it's 312. That's still a ton of people, 312 people. If there are three tops in the country, Wisconsin, New York, and Pittsburgh, that's at least 900 people. They're all doing six a week.

Then, believe me, there are so many more because I see all of these people on these forums who do talk about getting the surgery and they talk about other doctors. It's got to be way more common. I think it's one of those things that is not talked about. I think it's one of those weird, unknown things. I think it's one of those things that people suffer with these things and people can't figure out what it is and no one's ordering these brain MRIs when you're coming in with some of these symptoms. They're not thinking that there's an issue with the brain.

Especially when you come and talk about your elevated heart rate. My thoughts would be nowhere near your brain.

That's the thing. We have to hope now that these are all related and a lot of people do have that elevated heart rate with the Chiari malformation, but the one cardiologist I did see at UPMC and even Dr. Friedlander said, “There's no guarantee that the heart is going to get fixed because of it, it could be its separate issue and there's no way of knowing that until after we do the surgery.”

It's the severe headaches, bad pain in the back of the head, the neck, and the shoulder pain, which is what disappeared instantly after surgery. They also expect your numbness and tingling to disappear instantly after surgery. Those pretty much have gone. I was shocked waking up from surgery and to that constant pain that you lived with for months and months to be completely gone was shocking.

The shoulder and the neck pain, which they were also thinking it was my degenerative stuff and you're getting older and falling apart. It went away. Even if none of the other symptoms go away, it was well worth it to get rid of that constant, horrible pressure pain in the back of my head. I'll deal with my heart meds. They do a pretty good job of regulating my heart rate. It's figuring out what is what's connected and what's not connected potentially, and then is there more stuff going on? Who knows? It could be a medical mystery. We don't know.

Follow-Up Appointments

Will you have to continue follow-up appointments in Pittsburgh or can you be treated locally now?

I will have to go back to him. Part of Dr. Frielander's research is connecting those memory issues and the QRA. Before I had my surgery, I met with a neuropsychologist who did all of these memory tests. I was with them for three hours. I did all of these memory tests so that they have a baseline. When I go back in six months, I'll get a follow-up MRI for Dr. Friedlander to see where everything's at and then I will also meet with the neuropsych again to hopefully see an improvement in my memory and cognitive ability.

I will be going back. I had a bad incision site infection. I ended up having to go to Pittsburgh more than I should have after surgery. I was supposed to go back to get my stitches out and I was only supposed to be there for one night. We had a flight scheduled for that right after that appointment. I was supposed to be able to go home. I got to that point and he said, “Your stitches are not coming out. You're infected and you need to stay an extra two days because I want to make sure that doesn't get worse.

That screwed up our flight. Luckily, I had the pilot. I texted him to ask, “When do you need to leave? I'm going to be at this appointment and I'll let you know if I can't fly home.” Luckily, I caught him before he flew out and because of that, we ran into weather issues and we had to end up driving home from that appointment.

It was graduation weekend, Mother's Day weekend, so there were no one-way rentals. We had to rent a car, drive back, and then we had to drive it back for the follow-up appointment to get the stitches out after I was on the antibiotic. We were supposed to fly home from that, but we knew we weren't when we woke up because we knew the weather was going to be horrible.

David called and said, “I don't think we're going to get you one. How much time do you need?” I said, “It doesn't matter. He called me in a couple of hours and said that he was not going to be able to get that. I said, “Don't worry. Hopefully, we'll get a one-way. Luckily, no graduations were happening. We got a one-way rental, so thank God we didn't have to drive back to Pittsburgh. It's the thing, you always have to have your backup and that's one thing that you guys say, “Got to have your backup.”

I started as a flight coordinator and it's so crazy, going through the checklist of, “What are our options?” Amtrak, Greyhounds, you think of it, we probably tried it before. It's wild and then people's differences are so funny too, because I'm a millennial, and we're both millennials. We rented a car for somebody and she said, “Did you get me a GPS with it?” We said, “No. Don't you use your phone?” She said, “How am I going to use my phone and drive?” I was like, “You plug it in, and the car talks to you.” “What do you mean?” I'll never forget that one.

That's funny. It started to get worrisome that morning. Are we not able to get back? My husband's calling all the rental car places and they're like, “No.” My husband was like, “How can we not get a one-way rental? What do you mean there are no one-way rentals? What are you talking about?” We had no idea they held them all back during holidays and graduation. It was two big things going on at one time, and they were not letting anything go.

When we had the weather incident that next time, luckily were able to keep the same car we had, drive it back and leave it here because the one-way thing was restricted, but then it was let go because there was no holiday or graduation that time, thank God. I was like, I don't want to drive back to Pittsburgh for no reason.

I've never heard about that. You think you rent it from one spot and drop it off at the company where you live.

We had no clue that that was even going to be a potential issue. Luckily, it happened when we had to go back. I was like, “John, what if it happens this time?” He goes, “I already checked flights. We can't fly out today.” Buses, trains, what else can we do? I don't even know. The pilot that we had was so sweet. He said, “I'll buy you commercial tickets.” I said, “You will not do that. We will figure it out on our own, don't you worry.” That's the thing. These pilots have all been so nice. They're the sweetest people. That's the only thing I'm sad about. I never got to meet the ones I've talked to where we had to cancel the flights because they were so nice.

“These Angel Flight pilots have all just been so nice. They're just the sweetest people.”

The more you fly, I'm sure they'll come back because they feel the same way. They're always like, “I missed flying her last time. Let me pick it up now.”

I think the last one we were supposed to take was based out of Pittsburgh. He said, “My home airport's only a ten-minute flight because I'll literally be up and down and I'll be there.” He was from out that way and then another guy that we missed, I think, was in Lancaster. He was the one that was supposed to come pick us up that first time originally.

I wonder if it was John Greco.

That's what I was thinking. Especially when she said, “I'll buy you the ticket.”

It was John.

He's one of our favorites. He refers to Maddie and I as his adopted daughters. Every time he flies in the Wings, we have to give him a hard time, but he's the best and he's always going above and beyond for patients. If he can't fly them, he will say, “I'll buy the ticket. It's no big deal. It's probably cheaper than me flying them.”

That was the thing. The whole thing with us is not like, “My God, we're in dire need. It was the fear and anxiety that I had of driving home for five hours, but then it would have been God knows how long because the PA said that if you're driving home after this surgery, you have to stop every single hour to get out and walk so that you prevent blood clots.

I'm going to have brain surgery. I have to get in a car for five hours, which now is then going to turn into what? A seven-hour drive? That was my biggest fear. If they can fly me, that would be what, an hour and a half then, instead of being stuck somewhere for hours and hours and hours and worried about the pain and everything else.

It wasn't like I was in dire need of, “Yes, buy me a ticket.” No, I'm flying because I'm petrified of having to be in a car with brain surgery. Before I found out about you guys, that fear and anxiety of that drive home had me up in arms. I was so worried about what that was going to be like. Plus, you don't know how you're physically going to feel after brain surgery. That was a surprising thing because he told me it would be one night in the hospital and I was like, “Brain surgery, one night at the hospital? Are you sure about that?”

I'm reading all these things on Facebook, where people say, “I'm in the ICU for 2 nights, and then I'm in a regular room for 3 nights.” He's telling me I'm going home after one. Doesn't sound right to me, but it was. It was 1 night in the hospital and then we spent the next, I don't know, 4 or 5 days in a hotel because they wanted to do local in case anything happened.

He does some pain regimen that makes it so that you can get up and out quicker than normal other people, I guess. It worked. Even my husband, when I got out of the surgery, went out to the nurse in the hallway. I was in bad shape when I got out and from recovery to the room, I couldn't even get out of bed. He asked, “Be honest with me. Is she going to get out of here tomorrow?”

She was like, “You going to be very surprised at the difference when you walk in tomorrow morning of what she's going to be as what she is now.” He was shocked when he walked in and I was sitting there and everything was good. It was very crazy, the biggest complication was dealing with this infection afterward.

What is the final thing that you want to leave our readers with?

The Angel Flight Magic

Just that you guys are all amazing. I couldn't be more thankful for David and all the magic and strings that he pulled behind the scenes as flight coordinator. I'm so thankful for all the pilots. You guys are amazing. Tell anybody not to hesitate to reach out if they need a flight for something because it seriously was the easiest thing and there was nothing complicated about it. It eased my mind and made me feel so much better and more comfortable.

 

 

Medical stuff is hard enough to deal with and when you have all this other stress from how you're going to get somewhere or how you're going to get home, that's the stress that you don't need because you need to focus on what's going on medically. Something that can take that extra added stress away, take advantage of it.

I know people probably felt I did and Christie did and if you feel guilty doing this and don't want to, but when you talk to the pilots, you see that they're all amazing and sweet and are doing this because they want to help as well. I think that people are scared to ask for help and say, “This would be amazing for me.” I think people need to realize that, no, you guys all want to help. They all want to help. It's an amazing organization, and I hope more and more people will reach out. I know my doctor says, “We need to get some information and work with them.”

We do. Thank you so much for telling your story. This is awesome.

Thanks for having me.

Thank you so much.

I don't know if we said this yet, but every time somebody talks about how great David is, do they know that he admitted that he loved us? We're all very close friends because now we have to publicly say that because we have it in a text message that is not photoshopped.

Yes, David keeps telling everybody that we photoshopped it, but we did not. David outwardly and unpromptedly told us that he loves us. He used the word. Also, anytime anybody talks about David, I feel I take on such a mom role where I'm like, “My baby's growing up.”

 I know, but then I'm like, “Who are you talking about?” It is because our David is not that professional and he's not compassionate with us. He's so mean to us.

He brings us donuts, which are very nice.

Every time he brings us something, though, I'm like, “What did you do? Do we have to clean up your mess again?”

Not even again. I feel like he hasn't done anything that bad. I feel I get nervous. People should start being nice to us more so that we don't get nervous when people are nice.

Yes, because then when people are nice, I'm like, “What do they want from us?” They're going to ask for a big favor and they only brought us a donut because they know that we'll remember the donut and be like, “They did bring us a donut. I guess we can help them.”

We need to get bigger asks or something.

I thought you said something else.

No, I was going to say a big bottle of wine.

Yes, quit giving us donuts. We'll take the wine instead, happily. Nobody has seen our freezer, which is still filled with airplane mini bottles, which was from the gala a month ago.

I got stressed. I decided on a flavor for us.

That was a trying time in all of our lives.

It's not a bad decision. For anybody curious, go the mini-bottle route because then you don't have to decide on a bottle.

Don't choose bad flavors. Choose Fireball and less Pink Whitney and Sun Tan Lotion tasting liqueur.

I like the suntan lotion.

Thank you everybody for reading. I hope you enjoyed this episode and I hope your favorite part was not us talking at the end. I hope it was Erika explaining her journey with us.

Also, I realized that we told her to share this episode with her doctor, and here we are talking about liquor that tastes like Sun Tan lotion.

We'll see you next time.