How a Car Accident Led to a Long Health Journey | Steven Lopez Sr. 

Kerri Fitzgerald talks with Steven Lopez Sr., who was injured in a car accident, leading to a long health journey to discover he had Chiari malformation and syringomyelia, both of which put pressure on the spinal cord and result in severe pain and discomfort as well as other symptoms. Steven struggled to find a care team that was right for him and finally turned to social media to find a connection with other people who were dealing with something similar. Now, he serves as a voice for the community and uses his experience to help others as they navigate these difficult conditions. 

Key Highlights: 

• Hear how Steven Lopez Sr. went for years without a proper diagnosis. 

• Learn why surgery is not a cure-all for people like Steven. 

• Hear about how Steven has used his voice on social media to advocate for himself and others. 

• Be inspired by Steven’s partnership with Conquer Chiari to host a fundraising walk in September, coinciding with Chiari Malformation Awareness Month. 

Transcript:

Kerri Fitzgerald:

Hello and welcome to another episode of My Hero 360. My name is Keri Fitzgerald, and today we are highlighting the hero story of Steven Lopez Sr. My Hero 360 seeks to amplify the stories of remarkable individuals who have faced health challenges but are using their voices to inform and inspire others. Steven, your story does just that. Thank you for joining us today.

Steven Lopez Sr.:

You’re welcome. Thanks for having me.

Kerri Fitzgerald:

Steven, you have documented your health journey on your social media accounts. You have been dealing with Chiari malformation and syringomyelia. Just to give a little background on that for our listeners, Chiari malformation is a rare neurological condition where the brain descends from the skull, and it can put pressure on the spinal cord, which can result in severe pain and discomfort as well as other symptoms. Syringomyelia occurs when cerebrospinal fluid or CSF accumulates in the spinal cord and also puts pressure on the spinal cord. Can you talk about your experience with these conditions and what that has been like for you?

Steven Lopez Sr.:

I first found out I was diagnosed after a car crash. I was on my way home from work and it was gridlock traffic and someone behind me wasn’t paying attention, and I noticed it from my rearview, and they hit me around I think like 30, 35 miles an hour.

Right after that, it wasn’t 10 minutes after that, I started feeling these headaches, and it was this pressure in my head, and my left side of my face started to swell up. I didn’t think anything of it because I knew I had a herniated disc in my neck from a previous car accident, it was like 5 years prior. I thought it was just those symptoms that I re-aggravated it. I noticed as the days went on, they were getting worse and worse and nothing was relieving it. I got sent for imaging. They did my neck first, and then they diagnosed me with syringomyelia.

They saw that there was a Chiari there, but I was getting a lot of the gaslighting from doctors saying, “You don’t have it. You do have it.” Syringomyelia doesn’t cause any symptoms so the first 6 months was kind of frustrating dealing with that because I know something’s wrong with me. I could tell something’s wrong with me. At one point at work, they thought I had a stroke. I was having one because my face was droopy and I kept repeating myself. I knew that right there that something was going on that was just more than my herniated disc.

Kerri Fitzgerald:

Wow. How did you feel when you finally, after this time, got the diagnosis and understanding of what was going on?

Steven Lopez Sr.:

It took after the syringomyelia, they confirmed that, it wasn’t until about 4 months after that diagnosis that they did a full brain MRI, and it did confirm I had Chiari malformation. It was overwhelming because you go right to Google and Google is right away saying all these bad things, so I’m panicking myself a lot. I didn’t know what to think because I was still thinking about the syringomyelia. I’m like, “I got both of these on top of the neck issues with my discs, what’s going to happen?” I started to stay away from looking up symptoms and just trying to find the right care team, which was kind of hard at first. It took me about 3 to 4 neurosurgeons to actually listen to me and validate what I was going through.

Kerri Fitzgerald:

Wow. I’m sorry that you had that experience. What about the fourth neurosurgeon made you feel comfortable and like this was the person you were going to trust?

Steven Lopez Sr.:

I thought I trusted him.

Kerri Fitzgerald:

Oh, no.

Steven Lopez Sr.:

No. Yeah, I thought I trusted him. At first, when I first saw him, he said I didn’t have it. Then when I did another full brain MRI with contrast, he was like, “Oh, you actually do have it.” But he’s like, “I don’t want to do the surgery on you because I don’t believe that’s causing your symptoms.” He sent me the pain management and nothing was working. Then we found the doctor in Miami, a neurosurgeon, and I sent all my records to him. When I first saw him, he validated everything. He even got the measurement was off from the first time that I got it done from the previous surgeon. Right away, he said, “I could do the surgery on you.” I said, “Okay, yeah, I want to do it. I want to get rid of these symptoms or at least get some relief.” Because Chiara progresses over time, and there’s no cure, and I had a lot of blockage from it as well.

Kerri Fitzgerald:

You’ve talked about surgery. I know you’ve been through numerous procedures, numerous tests, including a decompression surgery over the course of this health journey. I know it’s been a few years since your surgery, and you’re still dealing with challenges. What has this all been like, and what has helped you kind of get through these really tough times and setbacks you’ve been experiencing?

Steven Lopez Sr.:

It’s crazy to think that I had it in 2022 and it’s just been nothing but a rollercoaster up and down with different tests and diagnosis. Then right after surgery, I had a CSF leak that was coming out of the top of my incision. That was another thing to worry about. Being re-admitted back to the hospital, that experience wasn’t fun to try to treat the leak. It’s the worst feeling I’ve ever felt before. Since then, he told me, “You’re going to have the pain. I’m sorry, it’s a 50/50 chance you are going to feel better or not.” But I knew something else was going on. You could just sense it that something’s off. Through those years, it took about a year or 2 to finally get listened to again because he brushed me off and said there was nothing he could do. That’s when I turned to social media.

I was one day sitting, it was literally a red light, and I said, “I want to start a new Instagram just to do awareness and try to connect with people to get help and get validated.” That’s when that started and that’s actually helped me a lot because people don’t talk about it with the mental, it takes a toll on you and then not a lot of people understand what’s going on or they don’t fully grasp how you feel. They think you’re okay. Connecting with others and I enjoy doing that and talking to other people.

Kerri Fitzgerald:

What has been some of the response or connections that you’ve made opening yourself up on social media like this?

Steven Lopez Sr.:

I’ve made a lot of friends actually. I don’t consider the other people, just all those people share the same thing. I actually speak with them on a daily basis sometimes. I’ve even made friends, and one of my actually are close friends now, he lives in Gatlinburg, his name is Eric. He’s a YouTuber out there, and he actually let me use his platform in Gatlinburg, and I did a YouTube video with him. He kind of interviewed me on camera, so that was pretty good. Him and I, I consider him like we’re brothers. I got a lot of other people that consider brothers and sisters along this. It helps a lot to have someone to reach out to.

Kerri Fitzgerald:

Yeah, absolutely. You briefly touched on the mental health impact and you talk about mental health as part of your platform, how chronic illness, chronic pain obviously really exacerbates that.

Steven Lopez Sr.:

It does.

Kerri Fitzgerald:

What is your message to others who are living with this condition or another chronic painful condition? What do you say to them?

Steven Lopez Sr.:

I say to them, just take it 1 day at a time. Try not to overthink everything. Advocate for yourself and get the answers. You’re going to be validated. Eventually, you’re going to find someone that’s going to listen and just do more research and reach out to others even though it’s hard, and you think, “Well, I have this lifelong chronic illness, it’s never going to go away.” But you could still adapt to a new way of life and just make your time and everything’s going to be all right. Nothing’s going to happen. Just keep that mindset. I know you could get into a dark space with dealing with this. I always say keep on fighting, take it 1 day at a time. That’s what I always tell people. You may not think it’s going to get better, but you’re going to feel a lot better.

Kerri Fitzgerald:

Yeah. You’ve opened yourself up on social media and bravely been very public, which can be hard to do.

Steven Lopez Sr.:

Yes, it is.

Kerri Fitzgerald:

What made you want to document this journey and be a voice for this community?

Steven Lopez Sr.:

I wanted to because I wanted to see how many others were out there. I knew just looking on the Facebook groups that there’s a lot of people and some of them don’t want to be vocal, so I want them to come to my page and they’re able to be vocal. They could share whatever they feel comfortable sharing with, even if you don’t want to do it on a post, sometimes they’ll reach out to me through messages and I try to help as much as I can. I get a lot of, “Oh, there’s no specialists near me. I don’t know what to do. How do you do it?” I always tell them, “You just got to keep fighting.” I even offer my hand to help, if you need help finding specialists, I give them resources where to go. It feels good actually to help others and know that there’s other people like me out there too that’s going through this with even having surgery and then there’s other things going wrong. It feels nice and makes you feel validated.

Kerri Fitzgerald:

Yeah, absolutely. You’re not only being this kind of voice for this community, but you’re also directing them to resources, like you said. Just so incredible. For people who haven’t ever heard of these conditions and don’t really quite understand it, how would you describe it to people, and what would you want people to know about these conditions?

Steven Lopez Sr.:

I want them to know that surgery is not a cure for it. Because we get a lot of, “Oh, you had surgery, you should be fine, and you shouldn’t be in pain anymore.” That’s one of the biggest things that people think, “Oh, you’ve already had this big surgery, I don’t understand. Why are you not feeling better?” But in reality, even before the surgery, it’s done the damage already. Your nerves, it’s just the pain. Even if it’s a good neurosurgeon, they’re going to tell you it’s a 50/50 chance. I always tell people the surgery is to slow down the progression. That’s one of the biggest things I’ve had issues with, even with some of my friends trying to get them to understand, they don’t fully understand it. I always send them links, send them a lot of research papers and tell them. Sometimes I even share my MRI with them and break it down what’s going on. It’d be nice if you had more support when it came to that, but we do the best where we can.

Kerri Fitzgerald:

Yeah, absolutely. To that point of advocacy and awareness, September is Chiari Malformation Awareness Month and you’re going to take part in an event with Conquer Chiari, their Walk Across America, which seeks to raise money for this condition. How did you get connected with this organization and how can others who are watching or listening support you or Conquer Chiari?

Steven Lopez Sr.:

I got connected with them last year through Facebook actually. I saw that they did awareness walks, and I inquired about how do I do a walk in my area because in Tampa Bay, the last walk I was told was around I think 2017, around there. I was like, “What a great way to bring a walk here to the area.” At the time when I reached out, it was too late. This was 2023, my apologies. I saw other walks. I went on YouTube and typed in Conquer Chiari, and I saw there was other awareness walks.

I was really excited to host one; 2023 I went to one that was actually not too far from here and saw how it was all organized. Then right after the walk, you start planning a month or 2 after. I started looking for sites, and I was like, “This is a great way to meet others, especially in our area.” I signed up, and I’m not going to lie, I was kind of scared to host something like that because I’ve never hosted anything that big before. I was also nervous that not enough people would show up.

But yeah, it was fun. Heather at Conquer Chiari, she’s really helpful, and she always gives you advice and tells you what needs to be done so you weren’t left out in the dark. I always encourage people that ask me if you want to do it might seem intimidating, but it’s all worth it at the end. You have to put in quite a bit of work, but it’s fun doing it because you’re doing it for the same reason, for the people that have the same situation as you. It’s good to all just come together and unite as one. It’s really nice to have.

Kerri Fitzgerald:

Absolutely. That’s really awesome. We’ll be sure to link and provide that information so people can learn more and maybe get involved if they’re in the Tampa area. Steven, we like to conclude My Hero interviews by asking the same question of everyone. That is, what would you tell your younger self or what would you tell yourself before this all happened, knowing what you know now?

Steven Lopez Sr.:

I would tell my younger self to prepare yourself to go through big life-changing events in your life and you’re going to have to be strong. Just when that day comes, don’t give up and keep pushing forward.

Kerri Fitzgerald:

That’s amazing. Well, Steven, thank you for sharing your experience with us. Your words are so important for others to hear, and I really think that this is going to make a huge impact. You’re already obviously helping so much I appreciate with your platform. Thank you for sharing so openly with My Hero 360 today. We really appreciate it.

Steven Lopez Sr.:

I appreciate you guys giving me the opportunity.

–

Connect with Steven: 
https://www.instagram.com/steven_chiari_warrior/ 
https://www.tiktok.com/@steven_chiari_warrior 
Learn more about Conquer Chiari:  
https://www.conquerchiari.org/index.asp  
https://walk.conquerchiari.org/  

About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. 

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