Ep 22 | Apirl 29, 2026 | 27 mins

Ryan Neal was five years old when a family dog named Casey pawed him awake in the middle of the night and that moment set off a chain of events that would define the next 30 years of his life. What followed was a misdiagnosis, a pioneering surgeon, and a near-miraculous shift from a malignant astrocytoma to a non-malignant DNET overnight. But surviving wasn't the end of Ryan's story, it was just the beginning of a life built on radical gratitude. Now an almost 30-year survivor, keynote speaker, and musician, Ryan shares how facing the worst at five years old gave him a framework for handling everything that came after.
A family dog's instinct may have been the first sign something was wrong
A mother's persistence made all the difference
Dr. Alexa Canady, the first African-American female neurosurgeon in U.S. history, performed Ryan's surgery
Overnight reclassification from astrocytoma grade 2 to non-malignant DNET changed his entire treatment path
Ryan has lived with a pineal cyst since age 8 with no growth
Sudden hearing loss in his left ear at age 10, completely unrelated to his tumor
Childhood medical experiences eliminated adult health anxiety
Gratitude as a daily practice, not just a feeling
Survivor's guilt as a motivator, not just a burden
Brain tumor journey evolved into a keynote speaking and music career

Bri will be participating in Coaching for Causes for another year. Each May, certified coaches from various fields donate our time for 1:1 coaching sessions. Clients make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit. I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. Visit coachingforcauses.com for details.

Resources
Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms
Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

Connect with Rewired Minds
Website: rewired-minds.com
Facebook: https://www.facebook.com/RewiredMindsPod
Instagram: @rewiredmindspod
LinkedIn: https://www.linkedin.com/company/rewiredminds

Connect with Ryan Neal
Website: ryannealmusic.com

Be a Guest
Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

Disclaimer
The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

Transcript
Bri (00:06)
I'm Bri Salsman, a brain tumor survivor and identity integration coach, and you're listening to Rewired Minds, a podcast that shares brain tumor stories that change us. Sometimes guests use medical terminology, so I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. You can find the full list in the show notes. Most importantly, take care of yourself as you listen and process.

Bri (00:29)
Before we get into today's episode, I'm very proud to share that I'll be participating in Coaching for Causes for another year. Coaching for Causes is built on two core principles, being of service and making a difference. Each May, certified coaches, like me, from various fields donate our time for virtual and in-person one-on-one coaching sessions. Clients, like you, make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit.

I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute, where I've received all my treatment and care. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. I encourage you to go back and listen to episode 14 to hear Caroline Lehner's story. She's the founder of Coaching for Causes.

Also, visit coachingforcauses.com for details and to find your coach, make a donation, and book your session.

Bri (01:28)
Today, I'm chatting with Ryan Neal. He's an almost 30 year survivor of DNET. He was originally diagnosed at five years old and it set him up for a life of gratitude. He shared with me that most setbacks aren't as bad as they feel because he learned what bad can actually look like. Welcome Ryan, thank you so much for joining me.

Ryan Neal (01:49)
Hey, thank you for having me.

Bri (01:50)
We originally met at the American Brain Tumor Association National Conference. And so when I decided I was going to launch this podcast, you were top of the list to connect with. So I'm so excited that we're making it happen.

But five years old, man, that is young. What, what do you remember about life before all of this came along?

Ryan Neal (02:05)
Well, I was, I was a very active child, very rambunctious, had a, had a pretty quote unquote normal childhood. Would play with my friends and just going to school, just having a good time. And then everything kind of changed, seemingly overnight. And so after that life looked a little bit different for a while.

Bri (02:30)
When you say it changed seemingly overnight, what do mean by that?

Ryan Neal (02:34)
So it all happened one evening when I must've been mid sleep and I was woken up to our family dog who we had just got at the time. It was a collie named Casey and she was pawing at me in the middle of the night. At the time I didn't think much of it, but she went up and got my mom and she thought, hmm, this is interesting.

And then I don't know how much, how much later this eventually happened, but I was at the dinner table, fell down and had a seizure in front of my family. So that set off a big alarm right there. We were trying to figure out what's going on.

After that, went to neurosurgeons and a doctor just to see kind of what's going on. Originally I was misdiagnosed as being epileptic. We had three different opinions from different doctors. My mom's very stubborn and she's in the medical field as well. She just kind of had this disbelief that I was epileptic. She said it looked like I was almost having a stroke. The neurosurgeon that we eventually landed on saw me actually having a seizure in her office. So I remember distinctly to this day, I was sitting on her table. She was looking at me and all of sudden I just kind of keeled over, fell on the ground, and started shaking. She confirmed that that wasn't an epileptic seizure.

And so after that, long story, but she ended up going to Africa to take a vacation and she ended up passing away during this time, so we were kind of up in arms what to do. We ended up going to Children's Hospital and they did a CAT scan and they said that I had a tumor and they wanted to admit me immediately. And once again, my mom was kind of bullheaded. She refused. She wanted to wait and get another opinion from other doctors.

So fast forward a little bit. I got a couple other opinions. And after my parents did some research, they found the best neurosurgeon in the area and her name is a Dr. Alexa Canady. And she ended up being the first African-American female neurosurgeon in United States history. And so at the time we were just lucky to be in the area where this world renowned surgeon, where kids would come from China to have her perform pediatric brain tumor surgery on them.

This was 1998. The technology at the time was either they do this full open head method where I would probably have to require a shunt afterwards. I'd probably have to be homeschooled. My life wouldn't look as quote unquote normal as it could if they took a risk and did this specific type of procedure back then, which is called a stereotactic method. Much more risky, but the outcomes for me to have a better life would be greater. So my mom got a call on her 40th birthday and Dr. Canady said, this is the tumor that your child has. If it was my child, she would let her operate this way and take a chance of potential paralysis, potential just not a great life afterwards if it doesn't work. And so they gave it a shot. And on February 4th, 1998, I had my surgery and then that evening, our local priest was a young guy and he got a group of 10 of my friends to come visit me in the hospital while I was recovering.

That was an evening, so I woke up the next morning, this is post-op, and the nurse comes into the room with the doctor and they tell my parents, hey, the initial tumor that we biopsied last night initially was rated as, it was called an astrocytoma, grade two. That was a little bit more malignant leaning. I would have to have radiation, chemo, yada, yada. And after that, they said, I don't know if the radiologist just made a mistake on the scan or your son just had some crazy miracle, but it has now shrunk and now it's called the DNET, which is non-malignant. And I wouldn't have to have radiation and chemo. And I would just have to be in the hospital for a few days, go home, monitor it periodically with MRIs and just kind of check up to make sure it doesn't grow in the future.

Bri (06:26)
Wow, that's a huge shift.

Ryan Neal (06:28)
It was, yeah.

Bri (06:29)
I mean at five years old, how are you understanding the things that are going on around you? Like are you making sense of this? Are you understanding this?

Ryan Neal(06:39)
I knew I was, I was different for sure than the rest of my friends because they weren't having to go to the hospital all the time and go through all these tests. But my parents did a really great job of making it seem fun and normal.

Like underneath the hospital, there was this big tunnel they call it the DMC, the Detroit Medical Center. It connects three big hospitals. And so there's this big tunnel underground and we'd have like wheelchair races. My mom would race, you know, my dad would be in the other one, she'd race me in the other one and we'd go to this Wendy's in the tunnel and it was a blast.

And so all of these times I was going to hospital, I never really dreaded it at all. Even though I was going for multiple MRIs, it seemed like I had an MRI every three months after that. It was, it was a lot for many years. Having spinal taps was a dreaded thing, especially seeing my mom's face having this big needle put into my, my spine. That was, that was pretty traumatic.

But for me, I didn't know anything different. I'm lucky that I had it back then because now looking up everything, I think the added anxiety, being an adult, having access to more information on the internet, which we didn't have as much back in 1998, it would have been much more stressful and much more anxiety inducing as opposed to back then where I was kind of young and just didn't really know what was going on. So to me, it wasn't a big deal.

Bri (07:52)
Yeah, something you said in particular jumped out to me of I didn't know any different. Of course, as you say it, I'm like, well, duh. You're still in that phase of being a sponge and soaking up everything around you and being curious about life. I mean, that's how we are as children. And so this is probably one more thing to be curious about in a certain sense.

Ryan Neal (08:13)
Definitely. Yeah. I was so thrilled, honestly, going to the doctors. I thought I was going to go into medicine years after that. I'm like, that'd be kind of cool to be, be a brain surgeon and kind of give back in that way.

Going to the doctor now, going to the hospital, it never phases me. Blood doesn't phase me. I've been through all that so much when I was young, that it kind of prepared me for things in life that were to come up. I was grateful that it had such a big impact on me early because waking up every day, just being so grateful for another, another chance at life. I'm glad that it happened when I was five and six and not later down the road.

Who knows? It could happen again. I'm currently living with one this day that they found when I was eight, two years later on a scan and that's on my pineal gland. So I'm still living with that. And then, in the same vein, two years after that, when I was 10, I woke up for school one day, completely unrelated to the brain tumor, but ran to the bathroom, got sick, vomited, and instantly the hearing in my left ear went out. It was like in those movies where the bomb goes off and it's that super high pitch ringing that just lasts and lasts. And that happened to me just completely out of the blue.

So from five to 10, I had a lot of these medical things that came up, but it really prepared me for life down the road because I don't really get anxious or worried about too many things in life because I know how fragile it is and how precious it can be. So I really just lean into that gratitude as much as I can, especially when I'm just feeling down and out.

Bri (09:38)
Yeah, yeah, absolutely. I'd love to pick up where you left off in terms of finding out that it wasn't astrocytoma. It's actually DNET. What happens from there? You mentioned you don't end up needing to do radiation.

Ryan Neal (09:51)
Right. So after that, I was basically just told to go home after three days and monitor to see if I had any seizures. Luckily, I haven't. I haven't had one since that first tumor was removed. But going to Catholic school at the time, you wear uniforms and I was the only kid in the whole school that got to wear a hat because my head was all cut open. I have this massive scar on the top of my head, so I have my head wrapped and a hat on for what seemed like months. It was a long time. So I always stuck out and felt special in that way.

I didn't really love it. I didn't love the extra attention cause at six years old, kids don't know any better. They're asking, mommy, why does Ryan have a hat on? Why does his head look like that? So that, that kind of felt weird.

But I was put on phenobarbital, which was a anti-seizure medication for a couple of years after that I had MRIs every three months to monitor.

As the years progressed and I wanted to get more involved in sports, especially football, as a 10 year old who wants to start playing tackle football and all my friends were doing it, my mom was such a champ and, even though she felt it probably wasn't maybe the smartest decision for me, she would rather her son be happy and not look back and have any regrets. So she would leave work every single day early and sit on a fold up chair at my practice and just watch from afar with binoculars just to make sure that I was safe and that if anything happened, she was right there. So literally every day.

Bri (11:18)
And were you aware that she was doing this in real time?

Ryan Neal (11:20)
Oh yeah.

Bri (11:20)
Yeah, this wasn't a secret.

Ryan Neal (11:21)
No, no, no. Cause there was, there was another child who played and he was a pretty severe diabetic. So both, both our moms were kind of like a, a tag team and they sat next to one another and just, just watched us from a full football field away. So for fifth and sixth grade, she did that. And I was just so lucky that nothing on any future scans came up until a couple of years later where they found the one that I'm still living with to this day on the pineal gland.

Bri (11:46)
Yeah, and what's that one?

Ryan Neal (11:47)
It's just a pineal cyst. I've been living with that one since the age of eight. So that would be what 1999. And luckily it hasn't grown. I've had it monitored pretty consistently throughout the years. And the doctor basically told me years ago, if you aren't having headaches, if you aren't having any symptoms, there's a good chance that it, it won't grow. But still continue to get it monitored and things of that nature.

And then the hearing thing happened and that just, that, that threw me off because the brain tumor. Yes, I did have seizures. Yes, it was, it was a lot during that time, but after they took it out, I didn't feel like I had ever gone through anything because it was like they removed something and the post-op was so seemingly easy for me. And then this, this random sudden hearing loss happens and that affects my life to this day, 25 years later. That was tough on me because that was before I wanted to even become a musician. And then next thing you know, half my hearing doesn't work and headphones are weird when you put them on and there's a big life adjustment there.

Bri (12:50)
Did you ever find out what was going on with the hearing situation?

Ryan Neal (12:55)
So essentially what happened, it's called SSHL, Sudden Censunereal Hearing Loss, or something. The second word is evading me, but SSHL. it happens to like few thousand people, I believe, a year.

A virus attacks the nerve in your ear. It just felt like I had the flu. I woke up one morning, threw up and next thing you know, my hearing is gone. It was so strange. Completely random. The doctor said it had nothing to do with the brain whatsoever. I had to go back and forth to the hospital to do these carbogen treatments where I basically put on this little oxygen mask and breathe in carbon and oxygen combined and to see if that would bring it back. And it didn't.

At 10 that, that changed my life a little bit again. And I had to readjust how I went about different situations. I would make sure I sat on the certain side of people that I was talking to one-on-one because I would, I would literally be like the old guy, like what? I'd be turning my head and I felt like I was 90 years old at 10, so if someone whispers into my left ear, it's just, it may as, may as well be white noise. It's just nothing.

So that took a little bit of adjustment, but after that you just get used to it. And, and the right ear, I feel like has gotten better. That's my good ear. And the body just miraculously adapts. And I feel like now if you gave me my left ear back, it would almost be odd. Like I'm so adjusted to my life now that I, I don't even notice really the difference anymore.

Bri (14:20)
Yeah, which is quite fascinating because you alluded to just a moment ago that you are a musician today. And so how has this played out in your career?

Ryan Neal (14:30)
It's funny. I started playing music after all of that happened. So honestly, really the only thing, I'm very vigilant about wearing hearing protection whenever I go to a concert or in a loud environment, obviously to protect the one that I have.

But in terms of music, really the only time that I notice it is when I have headphones on because if I'm listening to speakers or I'm working on a song and the speakers are coming back to me in the room, it's kind of just, it kind of just morphs into one sound and it doesn't feel weird.

But when I put on headphones, that's when I really notice it. The only thing I can hear without getting too nerdy in my left ear is like 125 Hertz and below, which is basically like sub bass. So you can't intelligibly hear what that sounds like, you can just feel it in your chest. So it's a very low rumble. So our speaking voice is much higher than that, which I can't tell at all. It doesn't really affect me as much as you would think.

Bri (15:24)
And how about the lasting impact of your DNET tumor, but also the tumor that you're living with now?

Ryan Neal (15:32)
It's hard to tell if some things are affected. I do have forgetfulness. Where did I place my keys again? I just set it down. I don't remember. Like stuff like that drives my girlfriend nuts. She's like, I just gave you this new water bottle for your birthday and you lost it already like six hours later. So stuff like that happens to me all the time. I lose things. I lose my keys, my wallet. I misplace them. I never actually lose them, but stuff like that. Sometimes I struggle to find a certain word that I'm looking for. I also wonder if that's connected at all.

I was fortunate enough to do really well in school when I’ve tried. In high school, I didn't, I didn't try it all. I just kind of skated by. But then in college, when I put my mind to it, I did really well. And I was proud of myself for focusing in that way. But other than that, I don't think luckily my diagnosis has hindered me in any facet of life. I think I've done the best I can with, with what God has given me the blessings that I continue to have going forward. I really look at my brain tumor, my hearing loss, and just my story in general as just a reminder whenever I'm having a bad day to just get through it because that five-year-old could do it. He was tough enough to go through all those tests and things during that time. What you're going through now kind of pales in comparison.

Just fortunate enough to be given that sense of hope and, and, resiliency at a young age because that's kind of how I, I live my life now. I'm very carefree in a way and live a very open and positive thinking type of life, which I think has, has helped me out a lot in many scenarios.

Bri (17:06)
These are the kinds of things that really get my wheels turning and I could go down a long rabbit hole on, but you shared the perspective that you've gained from this and I could probably go out and find just as many people who have come out of a challenge such as this, whether it's a brain tumor or some other kind of challenge with almost the opposite perspective of, you know, life is hard and nothing is easy. And sometimes we hear about like a woe is me perspective.

So I’m just curious what allows you to stay grounded in this perspective of gratitude rather than slipping into an alternative perspective. Not that any is right or wrong or good or bad, just curious around this.

Ryan Neal (17:51)
I just look at what it could have been, what life could look like for me. And whenever I see someone really going through a difficult issue, for example, my niece, my sister's daughter, she's seven years old now, and she's nonverbal autistic. That is a struggle. Like that for my sister and her husband, I mean, every day they don't know… She can't verbalize what's going on. That's a struggle to me. People who are wheelchair bound.

I donate some time at the hospital here and see these kids who that could have easily been me. Staring at a screen. They can't talk. They're just using their eyes to kind of manipulate movement on a screen and then their caretaker has to verbalize what they're trying… Like that's hard.

For me, I was so lucky. Yes, I went through this adversity at a young age, but if you were to look at my life from an outside perspective now, you would never know that. So I try to really dig deep and think of what could have been. And so I try to keep the gratitude just pretty straightforward. You could have had to go through this. You could have had a shunt. You could have been wheelchair bound. You could have passed away.

They initially gave me like six months to a year post-op. I’ve had survivor's guilt for many years after thinking about these things. You really got to count your blessings. And even if you are going through something difficult, there's always someone going through something worse.

I just try to keep that at the front of my brain whenever I'm having a bad day. I just have to because if I didn't, I would get depressed pretty easily.

Bri (19:22)
How does survivor's guilt show up for you?

Ryan Neal (19:24)
I think about it daily, if I'm being honest. Every time I hear someone else really struggling with something, it doesn't have to be a medical issue at all. It could be a relationship issue. It could be anything. I think back to what could have been for me and what maybe should have been in many regards. And so I'm just like, man, I have such an opportunity that's been given to me as a second chance, a third chance.

I was an idiot my first year of college and drank too much and woke up in the hospital out of town. And I wake up to my parents there just in a completely shocked state of like, wait a second, where am I? How did I get here? My parents are like, yeah, you almost drank yourself to death.

I've done so many stupid things in my late teenage years, in my early 20s, again, that probably I shouldn't be here. And so the gratitude is just wrapped up in all of that. And so the survivor guilt, not only because of my surgery back in 98, but just some of the stupid mistakes I made in my teenage years and early twenties. I'm just like, man, you are so dumb. But I'm so grateful that I'm still here alive to talk about it and share these experiences. Mistakes in life teach you a lot more than your accomplishments, at least for me.

Bri (20:37)
And what have you learned about yourself?

Ryan Neal (20:38)
I learned that I'm a resilient human being. I think I've been through enough now that it's really given me a positive perspective on life and it's eased a lot of stress in that way. So whenever I am feeling depressed, I try to reset, take a moment, breathe a little bit, and then just reflect on those times and say, man, if you could get through that this little hardship that you're trying to overcome is really nothing in the grand scheme of things. I try to prioritize my mental health. I try to get good sleep. I try to breathe multiple times intentionally every day, just to kind of reset and focus on the good things in life. I try not to get wrapped up in too many negative emotions, too much controversy. I try to keep my life simple and focused on the good.

Bri (21:23)
And what does life look like today?

Ryan Neal (21:24)
Life's exciting. Past couple of years have been really great. I found someone that I really love. That's a great companion. ABTA has opened my world up a lot to not only shed light on advocacy, but also take my skill sets that I've developed as a musician all of these years and tied that into a speaking career.

I've brand myself as like a keynote speaker who can also do a music element into it, gets the audience involved and without ABTAs openness and willingness to have me in 2024 and 2025, I may have not have chosen that path. And I've met a lot of people along the way in this past year, year and a half that do that for a living. And they've supported me and opened my eyes. You have enough of a story and you have a platform now that you can really help serve other people and go into rooms and change people's lives.

That’s what I really leaned into over the past year. I've been lucky enough to get booked for a handful of things, you know, this year and next year. So I'm very excited to enter that new era of my life where I can just affect people's lives that will give them hope and give maybe a new sense of, of who they are and who they can be while still combining my love of music and encouragement and advocacy. So it's been really exciting.

Bri (22:45)
That's awesome. Let's say a five-year-old out there listening right now who's sitting in the hospital getting ready to go into surgery, what would be a message that you have for them?

Ryan Neal (22:56)
I would just say, you're gonna make it. I firmly believe in the outcome of positive thinking and just to be yourself. Be strong. Keep being a kid. Don't try to out tough your feelings. If you wanna cry, cry. Hopefully they have a good support system that's around them. But I would say, just lean into who you are. Don't be ashamed of, of having a brain tumor, having cancer, having anything that the world maybe deems as a negative trait or a negative health consequence. Lean into that because, when you make it through, then you'll use that platform and use all of the power that that has given you to help change other people's lives. And I think, that's why we're on this earth as humans is to inspire people, leave the world a better place than we found it.

I didn't know until this past handful of years what I would do to really be an advocate for others. But it's just kind of all led me here and all my mistakes and all my accomplishments. It just all came into one.

Bri (23:54)
That's amazing. Ryan, how has all of this rewired your mind?

Ryan Neal (23:57)
Just to be a very, very grateful human. I have a extreme zest for life. I love living. I love taking chances. I love being in the present moment. It's getting increasingly difficult as the years go by with technology just so quick and everything just at your fingertips and the phone. But I try to really live in the present as much as possible. And because I know how quick life can be taken from you. So I really wake up every day and I'm like, yes, another, another opportunity.

I always try to in the morning really just take, take a second and be like, okay, you probably shouldn't be here based on your past life choices, based on what happened to you as a child. So don't, don't waste it. Do something, even if it's very small today that, either puts a smile on someone's face or empowers you in some way to get better for the next day.

Bri (24:45)
Well, Ryan, if people want to reach out, get in touch either about your music, about being a speaker at an event that they have going on, or just to connect and be in contact with others with similar experiences, where can they find you?

Ryan Neal (25:00)
I would say the easiest place is just my main website, RyanNealMusic.com. That'll get you to my bio, my contact form, all my socials, videos, music, speaking, all of that nature. It's the hub, and then you can get everywhere from there.

Bri (25:16)
Awesome. And I will include that link in the show notes as well to make it easy for everyone to access. And if I do say so myself, I highly, highly, highly recommend Ryan on the musician front, on the speaking front. I have had the privilege of getting to be in the audience when he's been on stage and when he says he gets the audience involved, he's not lying. There's not too long before you're up out of your chair dancing along.

Ryan Neal (25:42)
Well, thank you so much. I appreciate that. It's always fun.

Bri (25:45)
It is. It is a lot of fun. Awesome. Well, thank you so much, Ryan, for making the time. I appreciate it.

Ryan Neal (25:52)
Yeah, I appreciate you. Thank you so much for having me and hopefully I'll see you soon.

Bri (26:02)
Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com to learn more about collaborating on a future episode. This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community. If this episode resonated with you, please rate, review, and share with someone who might need to hear it.

Bri (26:34)
The stories shared in this podcast are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.