Country Singer Drake White’s Rare Brain Condition and Healing Journey

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast.
Happy Hump Day, Daniel. We record many of our segments on Hump Day, A.K.A., also known as Wednesday. Now, do you do anything motivating on Wednesdays to sort of get you over that hump?

Dr. Correa:
Well, one, I just enjoy getting a chance to see you.

Dr. Peters:
Oh, thank you. Oh, my gosh, I'm so motivating.

Dr. Correa:
It's a fun break in our week.

Dr. Peters:
Yeah.

Dr. Correa:
We get to sort of think about and connect, bringing these stories, all of these great experiences to our listeners and sometimes also get to talk about and hear from your great responses and questions. But typically I like to start my Wednesdays, whenever I can, getting outside early in the morning for a long walk with my dog, Cookie, no matter the weather. Taking that break to just feel the air and just be outdoors before getting back to the office or the hospital really helps me remember the relaxation of the weekend and put my week in perspective.

Dr. Peters:
Well, I just love that you get out there with Cookie and get some fresh air. I'm sure that Cookie appreciates it. I love to listen to uplifting music. It makes me want to sing along or whether I'm learning a new dance on TikTok. I did learn the apple dance. I don't know if you've had a chance yet, but I think it's a great way to stay motivated and it's certain to get ready for the rest of the week.
In this episode, we actually got to really focus in on music again. We got to hear from Drake White. He's an American country music singer. And he definitely sings the kind of songs that you can sing along to and feel uplifted when you listen to it. And I particularly like making me look good again. It's one of his famous songs that he's done. And he talks about his music, but he also talks about how he had to deal with condition called arteriovenous venous malformation, also known as an AVM, that led to some complications and a bleed in his brain, but he's doing fine now and recovering. So we're going to hear from him today.
Hello, podcast listeners. I'm so excited to welcome Drake White here today to the podcast. He is a soulful American country music singer and leader of Drake White and The Big Fire. And when I listen to his music, it's country, but it has this soulful tinge and I really appreciate it. And I also love all of his wonderful lyrics. They really do come from the heart and resonate with so many people, including myself.
Now in 2019, he was diagnosed with a condition called an arteriovenous malformation, also known as an AVM, so we're going to use that term. And we're going to learn about Drake's singing career, his journey, and his diagnosis with AVM. So Drake, welcome to the Brain & Life Podcast.

Drake White:
Well, thank you very much. Thanks for having me.

Dr. Peters:
Absolutely.
And I can look at the background, I see you've got some wonderful pictures on the wall behind you. Even though our listeners can't see, can you just tell us where you're joining us from today?

Drake White:
So I'm upstairs in my studio in my house. I live on a farm about 20 minutes north of Nashville. And 20 minutes still... Nashville has grown so much, but if you go 20 minutes outside of Nashville, you're in the country. And I grew up in the country, very rural upbringing, and so that's what I've got. I got about 20 acres out here with some ponds, and so I'm just in my studio just upstairs, just hanging out.

Dr. Peters:
Sounds like a great happy place. I'm also from a really small town in Tennessee, so I know exactly where those locations are. Can you tell us more about you and sort of your role as a country music star?

Drake White:
Yeah, I grew up, like you're saying, in this small town of 3,700 people, just one stop lot, a sonic and a two lane highway getting through, and you blink and it's over. I grew up playing sports and, baseball and football, found out that I could sing kind of through campfires and church and different social gatherings like that, but it wasn't really until college that I really found out that that's what God put me on Earth to do. I went to school at Auburn University there in Alabama and graduated with a [inaudible 00:04:48] science degree. So got through that and through my experience through Auburn, I started a band and decided to move to Nashville. Four years of grinding and just had always considered myself a nomadic spirit. I've always wanted to be on the road and see what's around the bend and love the thought of Willie and Waylon cruising down the road. I've always loved-

Dr. Peters:
[inaudible 00:05:11].

Drake White:
... that thing of being in a caravan of guys and girls that loved music and I've just never had something that gave me more life in my life. And I always loved it. And so moved to Nashville and thought it was going to happen immediately, and it took about four or five years for anybody to say anything and that was just from playing nearly every night in every bar that would let me pick up a guitar. And I kind of dared myself to disappear. This is a random turn in it, but I went, I'm the kind of person that... I got let go from my construction job because it was highly... I was kind of halfway doing construction and music. You see what I'm saying?

Dr. Peters:
Okay, absolutely.

Drake White:
And 2008 had happened and the construction industry kind of took a turn, and I said, "Hey, let me go before you let anybody else go," to my boss because, for me, my passion was music and I moved to Nashville to play music, not to pour concrete. So I got a $3,200 severance package, and I took that and I flew to New Zealand and lived in New Zealand for six months. And the reason-

Dr. Peters:
That is a amazing.

Drake White:
I know. The reason I picked New Zealand is because I saw Lord of the Rings when I was 12 and I was like, "I'm going to where that was filmed." And so I just gave you... I know it sounded like I was going down a rabbit hole, but I was giving you that... That's the personality that you're dealing with right now is I really like to kind of just get out there and see the world and do the things and that's why I'm happy doing what I'm doing.

Dr. Peters:
Well, that's amazing. You must have a lot of adventures in New Zealand. It's all the way across the world.

Drake White:
It really is. It's as far as you can get from Hokes Bluff, Alabama, for sure.

Dr. Peters:
Absolutely.

Drake White:
It was amazing. I've got a lot of good memories, I took a backpack and a hammock. So it was pretty awesome.

Dr. Peters:
Now you write your songs. Can you sort of tell us what is the process of writing a song? What is that like?

Drake White:
Yeah. Well, when I got back from New Zealand, that's when things started to change. I dared myself to kind of disappear. And when I got back I realized that the world had not changed. So that process, for me, started taking shape when I was 14 years old and I didn't even know it. But the New Zealand trip just kind of sparked everything and just gave me confidence to survive on my own and do my own thing. There is no rhyme or reason to my creative.
I could be writing a song right now over that picture over your right shoulder. I've been trying to figure out what it is by the way. My brain's always getting ideas and getting things and I'm the man of 10,000 ideas. I drive my poor wife crazy because it's hard to sit through dinner without hearing a melody or hearing something. And there's no rhyme or reason to what I do. I freestyle like a rapper sometimes. I write Hemingway or Faulkner sometimes, or I'd like to think I do. And sometimes it's a guitar thing that sets it off a melody. The music comes first or the beat comes first.
But I love to write a lot. I like to write every day in some form, whether that be journaling, whether that be studying scripture or whatever I'm doing. I like to read, write, and be in that for 10 minutes a day. I'm not talking about an hour. I can only do 10 or 20 minutes. But when I'm writing a song, a lot of times we co-write in Nashville with two or three people. And we'll get them together, and it's three people usually with guitars in music row around Nashville, and we sit down and sometimes we do it that way. Sometimes I do it fishing, sometimes I do it hunting, sometimes... So it's all over the place.

Dr. Peters:
Well, that sounds just amazing. And I recently listened to Life, Love, and War, which is your recent song. Can you sort of tell us about what that song is about?

Drake White:
Yeah, so the chorus of that song is there's a preacher's fire in your eyes and you smile like your mother. So it's about my son Hawk. We went through about seven years of infertility trying to have Hawk, went through IVFs and IUIs and all kind of stuff. And I watched my wife navigate that so gracefully and so there's a preacher's fire in your eyes. My grandfather was a preacher, so I see my grandfather in him. I see my bloodline in him. My wife's always smiling. And he just came out smiling. That's just the way he was immediately. And so that's the first couple of lines. I won't go through all the lines, but it's all about him.

Dr. Peters:
Oh, it's a beautiful song. And now that I know that, I figured that was the context and I just want to say congratulations on the little baby.

Drake White:
Thank you.

Dr. Peters:
You. Congratulations to your wife, and what a beautiful sentiment and a beautiful song. Now amid this growing sort of music career, you all of a sudden, get diagnosed with this condition known as an arteriovenous malformation, also known as AVM in the brain. So how did this sort of all come about and how did you discover it?

Drake White:
Yeah, well, we were getting set to go on another leg with Zach Brown and go out on tour, and we were going to Australia as well to perform in front of some really big crowds with Zach. And I've always been somebody that liked to train. I'm an athlete growing up playing sports and stuff like that. I loved that feeling of being in really good shape. So I liked running 4, 5, 6 miles a day and trying to be... I have my legs, so I was doing that rigidly, getting ready for this tour, and just prepping, just working out, just getting after it.
And I got a headache. And that headache was not like a hangover or just a normal nine to five headache from staring at a computer screen. It was a debilitating... I can't see anything, can't be in front of light, can't do anything. It was really bad. I've always been an optimistic person, but your brain starts to run. And I was like, "Something has got to be wrong."
So I put me in an MRI, and that MRI showed a lime size AVM water veins and arteries along the mobile cortex in my left side, which rest kind of behind your right ear. So in the back right side of my brain. And the lime size was told by my neurologist name here is Dr. Robert Miracle. And that's his real name. So his name is Dr. Miracle.

Dr. Peters:
Oh, wow. That's a great name.

Drake White:
And Dr. Miracle has literally worked on thousands of these and he said this is the biggest one he is ever seen. So that was how I found out about it. It was a headache. And I learned later that most people find out about these things around their 55, 60-year-old age and they find out about them because they pass out in the yard or something like that, or they end up dying or whatever, and they're just kind of silent killers. But Dr. Miracle said that because I was so active and I sang with such intensity... When I sing, man, there's veins popping out, I'm spitting all over the place. I'm like I'm getting after it.
And he said, "You wore your brakes out on your AVM. The bumpers are gone. And that's why you felt that at 35 years old, you felt that pressure."
And that's what it feels like. It feels like a pressure headache. So, yeah, very painful, very scary because I didn't know what an AVM was, but we had to stay about two days before we got the results back of what that mass was. So we didn't know if it was cancer or we didn't know what it was. And a lot of times these AVMs are around the part of the spine, in the brain where they're inoperable. You can't touch them because of fear that they may mess up more than they'll fix. So they're tumultuous little things, you know what I mean? They're just a lot of veins and arteries that it formed, I'll say this, it formed in the embryonic stage too. So I was born with this. And I didn't know it. I'd never had an MRI. Out of all the motorcycle wrecks, all the full-wheeler stuff, all the football injuries, all of that, I've never had an MRI. Why? I don't know, but you can bet your butt that Hawk will have at least a scan to see what's going on.

Dr. Peters:
Oh, yeah. We'll check out Hawk.

Drake White:
Yeah, for sure.
Dr. Miracle set out a plan. He said, "Drake..."
Because what do you think I wanted to know? I wanted to know if I was going to be able to play still.

Dr. Peters:
Of course.

Drake White:
I felt normal. I felt young and vibrant. I was in good shape, I just had a headache. Could I get rid of the headache? He armed me with this blood pressure medicine and he said, "We can schedule these out." It's going to take seven to nine embolizations. He meant going up through my femoral artery with a catheter into the back of my brain and squeezing it full of Onyx. The stuff called Onyx that would actually make it just a lesion because you don't need in the part of the brain this thing was in, it was okay. It's still there. It's all glued shut, but it's still in the back of my head, but it's okay.
So he said, "We're going to do probably seven to nine, I'll know once I get up in there, embolizations. And we can do them on Mondays, you can rest Tuesday and Wednesday, and armed with your blood pressure medicine, you can jump on the bus with the guys on Thursday, and be out there Friday and Saturday so yeah, that's all I needed to hear.
So here we go. We set out in January of 2019 and we're rolling through, we get through 40, 50 shows, and August has hit, and it's hot, and I feel good, and my headaches had went away, my blood pressure medicine made me dizzy, but I thought, "You know? I can deal with this." And there was only a 2% chance of it rupturing that he gave me with it the size of a lime.
And he said, "As I embolize this thing, the chances of it rupturing will lessen." So we were four embolizations in and 50 shows into the year so I was confident. I was really confident that I had beat this and just dodged a bullet. And I got out in Roanoke, Virginia, are you ready for me to go into this because this...?"

Dr. Peters:
Oh, yeah.

Drake White:
So it's just progressing of... I know you're not talking much, but I'm confident I'm ready to knock these out and continue what I've built. I take the stage in Roanoke, Virginia and I felt fine, and it was about 95 degrees in August the 16th of 2019 and start jumping around, I'm very high energetic performer. And I'm bouncing around, and it's cotton candy and Ferris wheels, and the sky's pink and purple, and there's 2,500 people sweating, and you have all these corn dogs and carnival things going on. And man, I was just in a good spot. And I felt just a little bit of a dizziness, which I thought it was the blood pressure medicine like vertigo or something. I dealt with that a lot because of the AVM pressing on my mobile cortex. That's what it was doing. And I started trying to sing the song about three songs into the show and I couldn't remember the words.
And then I realized my left hand, I was gripping as tight as I could and I felt like I was about to drop the microphone out of my left hand. And then my left foot, I was trying to walk to the other side of the stage and I realized my left foot felt like it had a bowling ball on the end of it. And then my left shoulder felt like an elephant was sitting on the side of my shoulder. And then my face felt like it was drooping, and I was like, "Man, I'm having..." I knew. I said, "I'm having a stroke. This thing's ruptured."
And about that time that I thought that, I heard an audible snap like fingers snapping in my ear right here in my right ear. And when that happened, I started staggering, and they knew something was wrong by then, but by the grace of God, I was being looked at by... EMTs were in the crowd.

Dr. Peters:
Oh, that's great.

Drake White:
And I had a packet built of what it was and they were notified that this guy has an AVM. All of my shows were like that. "This guy has an AVM. If this happens, rush him straight to the hospital."
Well, the hospital was right around the corner. It was literally three minutes away. So they got me in the ambulance, they pulled me off-stage. Everybody's scared to death, because we're four songs into the show. I've got them, I've got people in my hand. And then I completely... I couldn't talk. I couldn't do anything. And then I started vomiting because brain bleeds, so it's like a projectile vomit. So that scared everybody.
And so they pulled me off-stage and they get me in an ambulance and we give them the packet. And we said, "This is what's going on."
And they were like, "Oh, gosh," and get me to the hospital, which is a trauma one hospital, which there were neurosurgeons there on staff.
Look, it was angels is what it was. And I was able to get that brain bleed to stop bleeding within 17 minutes of it starting. And that's what saved my life. And it barely did that. I felt like I was coherent the whole time, but I was not... They were a very, what do you call it, a student kind of situation hospital like Vanderbilt where they're teaching the students how to be doctors. So there was a lot of people in there evaluating me and I was like, "Why are all these people in here?"
And what they were doing is deciding whether they were going to put a drain in my brain. And they wouldn't give me any pain medication and the excruciating pain, like screaming pain, begging it to stop in my head, and they couldn't give me any pain medication because they wanted to make sure that I was still coherent, not brain-dead. And I could hear them discussing that. So that was extremely scary.
Religious or not, you start praying really hard when you are in that situation because it's very helpless and very painful, and there were definitely angels in the corner of the room for me because I saw them. They were there. I watched them come in and help me get through what I went through and, yeah, so that was two or three little miracles in there that happened. The vicinity of which we were in, the trauma one hospital and the neurologist being on staff, the ambulance ride, and having the packet and having that... They administered a coagulant that stopped the brain bleed very quickly. That was a bang, bang, play. That was like Dr. Miracle was on the phone within 10 minutes of it happening. The neurologist and him talked. And they were like, "Give him this in his IV," and that's what they gave me and it stopped, I don't know what it was, but it's some kind of coagulant to make that brain bleed stop.

Dr. Peters:
And I think that's so important. And I think what you're, again, it really does take everyone and it takes those big miracles and those little miracles for things to happen. And I'm just really glad that there was [inaudible 00:20:45] EMTs in the audience, you were so close to that hospital, people reacted very quickly, and then they reacted like a big team to help you. Now you mentioned that you had some weakness on your left side. Did that get better?

Drake White:
It's like trees growing. I was a guitar player. I'm still a guitar player, but I struggle a lot because dexterity is not there in my left hand anymore and it takes a lot of dexterity to play a guitar. But other than that, I worked out four times a week, five times a week, and ride my bike and do all kinds of things because a lot of synergy patterns started forming and I still have trouble tying shoes and getting up out of the floor and stuff like that. But the everyday me walking and talking and doing that kind of stuff, I'm able to maintain a normal life, but it's not because I've had to work my butt off with some great PTs and OTs. So shout out to all the OTs and PTs out there. But I had a purpose, and that's what I would say to your listeners out there.
I was pretty mad at everybody and everything because I had it pretty set up. I had my dreams right in front of me. I was about to accomplish my dreams and have what I wanted and the proverbial rug got pulled out from under me. But you have to find in that, and I'm not preaching, this is just what I did. You have to find the thing that makes you go. For me, it was my wife and me had dreams of kids and I had built this platform and I wanted to get back to the stage, and back to music, and back to writing because now I had a muse to write from, see? But you have to focus on that goal of... For me, it was the stage and a family. For you, it may be just getting back to church or getting back to playing pickleball. I don't know what it is for people.
But man, pick that thing out, whatever you're going through, and drive yourself towards it. Do it for other people. Don't do it for yourself. Do it for the stories. Do it for the songs. Do it for just having another day, I just love life. I always have, and I'm lucky to be here, but man, I was really mad there for a long time so I will say that I did have a hard time mentally getting through it. But through just the blessings of all the OTs, PTs, and therapists that helped me mentally get through, and I came out a more empathetic person. I came out of hopefully a better husband, my wife will hopefully vouch for that, and a better dad, a better individual. But I still get so mad when I can't swing a golf club and hit a ball 290 yards like I used to, but it's okay.

Dr. Peters:
Well, it sounds like you have a heck of a support system too. You mentioned your wife, you mentioned your father, you also mentioned Hawk. How did they sort of help you through in that experience of getting through that anger and really owning it, owning what you want to accomplish and drive towards?

Drake White:
That's a great question. Patience. My wife deserves the moon and stars for her patience and what she had to go through. From having to help me use the bathroom at one point. But for her to deal with it with grace as a wife and say, "It's okay," meant the world and I could not have done it without her, my mom, my dad, her mom and dad, everybody came to my house and my rescue. They all came in and family was so important in that so I don't know what I would've done. So for the people out there battling stuff on their own, I don't know. I don't know what I would've done without them because there was a lot of mental breakdowns, there was a lot of anxiety attacks, there was a lot of thinking I was having another stroke or seizure. I couldn't drive. I love driving. I love getting in my 69 Bronco and driving through the country and being my own man, and I couldn't do any of that and they wouldn't let me.
And they would look at me... I would say, "I feel fine. I feel like I can do whatever..." This was six, eight months after the stroke.
And they would look at Alex and go, "You think he's fine?"
And I'm like, "Hey, I'm right here."
So that was my fear. They don't think I can think for myself. I'm a hard-nosed, hard-headed guy when it comes to... I can think for myself. And man, it was hard. It was very hard. And like I said, my wife deserves the world.

Dr. Peters:
Well, I think you have a lot of great support. And again, your story is going to resonate with so many of our listeners, whether they've had a stroke, or that they've also had an AVM, whether they've had other neurologic conditions like multiple sclerosis. They're all going through the same kind of journey, and I'll just say they need to continue to have that drive just like you have.
And Drake, I just want to say you have been amazing. I just want to thank you so much. Again, a shout-out from an Alabama boy to a Tennessee gal, that was me. You're now a Tennessee guy. But I appreciate this conversation and I just wish you the best in the country music world. Hope to see you get the Opry sometime-

Drake White:
Absolutely.

Dr. Peters:
... and thank you for sharing your journey with AVM.

Drake White:
Thank you for giving me the platform. I appreciate it.

Dr. Correa:
Can't get enough of the Brain & Life Podcast. Keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainandLifeMag or visit brainandlife.org.

Dr. Peters:
Hello, listeners, and thank you for joining us today on the Brain & Life Podcast.
Of course, I'm your podcast co-host Dr. Katy Peters, and I'm so honored to introduce our medical expert today, Dr. Ali Zomorodi, who will discuss arteriovenous malformations, also known as AVMs. Dr. Zomorodi is a fellowship-trained neurosurgeon with a special interest in cerebrovascular and skull-based neurosurgical procedures. He's a professor of neurosurgery at Duke University School of Medicine where I am so happy to always share patients with him. He specializes in skull-based tumors, certain types of vascular tumors that affect the brain, brain aneurysms, AVMs, which we'll discuss today, and strokes. So welcome to the Brain & Life Podcast, Dr. Zomorodi.

Dr. Zomorodi:
Well, thank you very much for having me, Katy. I'm excited to share some information with your audience and to have a nice chat with you.

Dr. Peters:
Wonderful. So before we get into the specifics of AVM, which we're going to chat about today, can you just tell us about yourself and where you're joining us from?

Dr. Zomorodi:
Yeah. I'm currently at Duke University School of Medicine where, as you said, I'm a professor of neurosurgery. I'm actually a lifelong, as they say, Dukie. I came here straight from high school to be an undergrad at Duke, and then I stayed here for medical school and residency and fellowship, and now my career. And somewhere along the way I fell in love and got married to a professor of nursing at UNC, and so now I have to live in a house where both of my children and my wife are diehard UNC fans and I just have to stay quiet throughout basketball season.

Dr. Peters:
That sounds like a lot of fun through basketball season. Now, I heard another thing that you enjoy is opera and you actually serve on I guess the board for the North Carolina Opera. Do you have a favorite piece of operatic music you could tell us about?

Dr. Zomorodi:
Yeah, I love opera because it's such a diverse art form. There are composers who write amazing lyrical pieces, and then there are composers who do just unbelievable theatrical productions. And for me, one of my favorite composers for just sheer musicality is Verdi. And I actually am a big fan of his opera, Aida.

Dr. Peters:
Oh, wow. Well, I love to learn more and I want to give a plug to our podcast. This week's episode actually features RenÃ©e Fleming, who I'm sure you know. She actually shared information about her personal life and her singing, and she has a book called The Music and Mind: Harnessing the Arts for Mental Wellness, so I'm going to encourage you to check it out.

Dr. Zomorodi:
Yeah, I'm looking forward to listening to that. I actually have a recording of her singing some of Mahler's songs, which I've listened to almost once a month for the past 10 years, so I'm a big fan of hers.

Dr. Peters:
Well, great.
Well, you're a neurosurgeon. You specialize in vascular tumors and malformations in the brain. Now, can you tell us sort of what are some of the common types of vascular tumors and malformations?

Dr. Zomorodi:
Sure. So vascular tumors are tumors which are uncontrolled growth of essentially blood vessels in the brain. And they're treated like tumors, they're very rare, and they can cause some bleeding, but oftentimes they present because they assume a large mass and take up a lot of room in the brain. The most common of these rare vascular tumors is what's called a hemangiopericytomata, which is associated often with a genetic disorder, and that's the condition in which we often encounter it.
On the other hand, vascular malformations are not tumors, but what they are is, as the name suggests, a malformation or an abnormality in the blood vessels that changes the shape or the structure of the blood vessel or changes the way in which the blood vessel is connected to other blood vessels. And typically what this does is it can disorder the organized progression from a high-pressure artery to a low-pressure capillary to a almost no-pressure vein, and that short circuit that can develop as these lesions sort of undo that progression can result in patients having bleeding from the lesions.

Dr. Peters:
That sounds pretty scary for our patients if they were going to have a brain bleed. But now specifically, what is an arteriovenous malformation?

Dr. Zomorodi:
The arteriovenous malformation is one of the more common types of these vascular malformations, and it does exactly what I was hinting at. Basically, it's a direct connection between a high-pressure artery and a low-pressure vein without any intervening capillaries to decrease the blood flow. And what winds up happening as a result is you have very rapid flow of high-pressure blood into a system that's only designed to handle low-pressure blood flow and slow blood flow. If you look at these under the microscope in the brain, they look like a tangle of blood vessels and there's no real brain material in the midst of the lesion, but it does have what's called a nidus, which is where these connections between the arteries and the veins can happen. And because the veins can become overwhelmed by the high-pressure flow, they dilate and become quite large and they can even develop little aneurysms or varicosities on them.

Dr. Peters:
Now, are there certain types of people that are more predisposed to these AVMs?

Dr. Zomorodi:
Well, it's thought to be a congenital lesion, although we are starting to see that there's a spontaneous formation of it. There is one condition called HHT, which is a genetic condition that can predispose people to develop AVMs, but otherwise it's considered to be a spontaneous thing without any risk factors for its development.

Dr. Peters:
And so if someone has an AVM, what are the symptoms that they would see?

Dr. Zomorodi:
That's sort of the scary thing is oftentimes these things can be present and growing without causing any symptoms whatsoever.

Dr. Peters:
Okay.

Dr. Zomorodi:
But in extreme and rare cases, they can bleed and so the patient will present with the symptoms of an acute bleeding event in the brain. That can be the sudden onset of an excruciating headache, some loss of neurologic function, or even loss of consciousness.
Other times, these lesions without bleeding, they can rarely cause seizures to happen in patients. And if they get to be very large, especially if that vein that gets dilated and engorged starts to get so big that it presses on adjacent neurologic structures, patients can develop some symptoms from that. One of the typical ones is when a vein associated with an AVM presses on the nerve that controls the sensation to the face, patients may develop some numbness or even pain in the face, and that might be how they come to be diagnosed with their AVM.

Dr. Peters:
So it sounds like these can just be found incidentally, or you have a neurologic symptom and you get imaging, and they find the AVM, is that correct?

Dr. Zomorodi:
Yes, that's exactly right.

Dr. Peters:
And so we interviewed Drake White. He's a country singer, he has an AVM, he had to undergo a procedure for it. How does a course for somebody with an AVM differ from patient to patient and how?

Dr. Zomorodi:
Yeah, so we've studied AVMs and studied how patients respond to treatment for AVMs. And what we've learned is that we need to be very deliberate about who we choose to treat and how we choose to treat them. We need to have an idea of the risk of the natural history of the AVM, so how likely is it to bleed and cause some neurologic problems for the patient, and how risky is the treatment of that AVM going to be. And so we can determine that by doing some imaging studies to get a better sense of the anatomy and the location of the AVM and what neurologic structures are associated with it.
Then if after we do all of that, we weigh the risks and the benefits and we decide that treatment is necessary, we may undertake a course of treatment that involves either radiation or embolization, followed by microsurgery on the brain to remove the AVM. But if we decide that the risks and the benefits do not merit treatment, that it's safer to leave the AVM alone, then we will just undertake a course of watchful waiting and sort of vigilant monitoring of the AVM.

Dr. Peters:
Well, thank you for sharing that. Now, what types of special imaging you mentioned that you do, special imaging or testing? What do you do? What is that special imaging?

Dr. Zomorodi:
Yeah. Well, what we've learned in order to determine the risks of the AVMs, we have to know what blood vessels supply them and how the veins that take the blood out of the AVM, where they are going and how they're connected back down to the heart. And we need to know what functions in the brain are associated with the area where the AVM resides. So in order to do these things, we do non-invasive imaging. An MRI or a CAT scan allows us to see the location of the AVM and what adjacent brain structures that are surrounded and what function they may serve. If we find that the AVM is close to what the so-called eloquent brain, which has very critical functions associated with it, we can follow this up with a functional MRI scan that actually gives us a map of what functions the brain regions around the AVM serve.
And that allows us to determine if the AVM is in a non-eloquent or eloquent area, and what might be the risks of trying to approach this AVM. And then the most important study we do is a diagnostic angiogram where we place a small catheter into the blood vessels going to the brain, and we inject contrast and get high-resolution films made that allow us to actually map out the exact anatomy of the AVM. And we can see how many blood vessels are feeding the AVM, and from where, and we can see how many blood vessels are draining the AVM and where they go. And we can put all of this together to get a picture of that risk and benefit that I was talking about earlier.

Dr. Peters:
Well, that's fascinating. How large can these get? What is the size?

Dr. Zomorodi:
Oh, my... They can be quite large. They can take up a whole hemisphere of the brain in some patients. But most of them are not that big. Those are very rare. But they can be quite small, less than a centimeter or so in size to quite large, covering an entire hemisphere.

Dr. Peters:
That has to be just very scary to encounter, but that's why we need specialized neurosurgeons like yourself to do these complicated surgeries. Now in the last year, can you tell us about maybe some interesting neurosurgical advances that have been made to treat AVM?

Dr. Zomorodi:
Yeah, as you suggested and hinted, these are difficult lesions to take care of for neurosurgeons. And I think some of the most exciting work that's been done in the past year has been on the genetics and the science related to the biology of these AVMs. So we're gaining a lot of insights about the molecular pathways that go awry to allow these AVMs to develop, and we're gaining some insights into some molecular or genetic changes that might actually predispose a person to having bleeding from these AVMs. And very similar to the work that you do with brain tumors, we're starting to look at different medical therapies that can affect or interact with some of these abnormal pathways to try to change the natural history of these AVMs.
In some mouse studies, we've seen some medications that can actually reverse an AVM altogether, so there is some exciting things ahead. Of course, it takes many years to go from understanding the biology of these diseases to actually having medications that work on them. So for the near future, surgery, radiosurgery and endovascular treatment are going to be the mainstays of treatment for AVMs, but I'm looking forward to a day where we can treat these medically.

Dr. Peters:
That sounds very exciting. It's all about targeted therapy, knowing what you're targeting, so I think it's nice when we can have not just better treatments for our patients, but complementary treatments, both surgery and like a medical side.

Dr. Zomorodi:
Yeah, absolutely. And I think we can potentially use a combination of different modalities to get these AVMs to be safely treatable.

Dr. Peters:
So for your patients that have maybe a surgery for AVM, after they have surgery, what are the next steps that happen for that patient?

Dr. Zomorodi:
Yeah, it really depends on how the patient presented. For example, if the patient presents with a hemorrhage from the AVM, the bleeding that occurs from the AVM can cause some neurologic deficits. It can be like a stroke for the patient. They can have a sudden onset of the headache, as I mentioned, but then they can have some lingering problems with strength or sensation or memory or language function. So those are the parameters that really determine what the post-operative care and living with your AVM is going to look like for the patient.
It's important that centers that look at treating these lesions actually have a very well-established multidisciplinary program to be able to take care of the patient, not just from the diagnosis and treatment size, but also from the survival and recovery side of the picture. And so it really is a very variable situation for patient to patient depending on what deficits they may have, what their recovery looks like.
At the very least, what we need to do once we've treated an AVM is to make sure that it doesn't come back. There's a small chance that that can happen. And so we would have a regimen of repeat imaging and a diagnostic studies that we do on an annual and then a less frequent basis throughout the patient's life to make sure that they stay free of disease. But the other aspects of the recovery really depend on the individual patient's conditions.

Dr. Peters:
It's so important to get all of those multidisciplinary teams involved from physical therapy, to speech therapy, to occupational therapy, and of course, your fellow neurologists like myself.

Dr. Zomorodi:
Yes, absolutely. Like I said, sometimes patients present with seizures and they can have ongoing needs for medical management of neurologic conditions, and it's very important. I made a mention of the fact that these can present like a stroke, and to a patient, it feels very much like a stroke. And our colleagues in neurology are really quite expert at all the different things that a patient needs to recover function from a stroke and have a as meaningful a life as possible.

Dr. Peters:
And how do you factor the caregivers and care partners into this? What would you recommend to them as somebody is maybe recovering from a surgery or rehabbing from maybe a neurologic injury caused by an AVM?

Dr. Zomorodi:
Can be a life-altering experience. Our aim with surgery, of course, is to do it in a way that the patient doesn't develop any new deficits. And if we achieve that goal, then fortunately the burden on the caregiver and the patient will be fairly minimal. There'll be a period of six to eight weeks of just recovering from the operation, regaining their stamina, and their ability to maintain their concentration and things like that. But for those patients who have significant neurologic deficits, either because the AVM is hemorrhaged or from seizures associated with the AVM, the caregivers really play a very important role in keeping them safe and being able to help them, enable them to have an enjoyable quality of life as much as possible. And that can be very taxing on people, and it's important to keep the caregiver in mind when considering the patient's trajectory as they're dealing with these conditions.

Dr. Peters:
Well, Dr. Zomorodi, thank you so much for being with us today. We've learned so much and it's really important what you do for patients with AVMs and with vascular tumors and different vascular malformations. Thank you for what you do and for chatting with us.

Dr. Zomorodi:
My pleasure. I really enjoyed it. Thank you for having me on.

Dr. Peters:
Absolutely.
And I want to also thank our wonderful listeners and I look forward to chatting with you more soon.

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Dr. Correa:
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