 Hello there my beautiful internet friends, welcome back to my channel. Today we are going to be talking about what the heck is wrong with my brain. Many of you who have been around on this channel for a little while know that I was born with a condition called a kiari malformation. It is a structural defect in my brain that causes a lot of issues. Allow me to pause for just a moment before we return to today's video. I would like to introduce you to today's sponsor, Abridge. Abridge is a free app that allows you to record and transcribe your healthcare conversations. This is something that has honestly been really really helpful to me and I cannot recommend them highly enough to you. I've also had conversations with people within the organization and they really care about what they're doing here. One issue that I've run into over and over again in the multitude of medical conversations I've had, doctor's appointments, so on and so forth, is that it's hard to remember all of the necessary details. It's hard to remember exactly what happened, especially if you're dealing with some kind of health issue, especially if anything that you're talking about gets emotional. I sometimes try to bring another person along with me to remember details that I might forget, but that's not always possible and they might not always remember all the details that I'm looking for. That is where Abridge comes in. So not only is it going to record your conversation so you could listen to the whole 15-minute appointment back, but it also pulls out meaningful moments where, for instance, medical terms might have been thrown around so you can pull those moments up really quickly and easily. And my favorite thing about it is that it is ridiculously simple to use. All you do is you open up the app and you hit that button and you're good to go. For instance, the other day I had an MRI screening, so they had to go through a bunch of questions with me. So I need to remember this conversation, maybe, maybe not, but I did go ahead and record it to show you guys how this screen actually works. I named it MRI screening and you can see where it pulls out meaningful moments here. If it does get anything wrong, you can always just hit the edit button and you can change it and you'll be good to go. A huge thank you to Abridge for sponsoring this video. I appreciate it and more than that, I am really excited to share this with you because I think it's something that can honestly help a lot of people as it's helped me. You can download Abridge in the link in the description right down below and let me know what you think. So let's talk a little bit about what is wrong with my brain. So a little bit of backstory for you. I've always felt things a little bit differently than other people. As early as I can remember, especially being a teenager onward, I dealt with a lot of pain in my head. I would have a lot of headaches, which developed then into having migraines often, like a couple times a week. I was very dizzy and off balance and nauseous a lot of the time. I would struggle to put words together sometimes and occasionally have weird little vision issues. And I always thought that these were unrelated things. I just knew that something wasn't quite right with me. And so I started seeing doctors, which led to pain management doctors, which led to all different kinds of appointments. But weirdly, no one actually figured out what was wrong until I was 22. I went in for a neck MRI because I have a lot of pain in my neck due to a few compressed discs. And they came back saying, hey, I actually think something's going on with your brain because the top of the MRI, even though it was an MRI on my neck, had caught something that looked a little funny at the base of my skull. I then was told over the phone that I had a brain condition, a brain problem, and might need brain surgery for it, which was a little bit terrifying at the time. I dove in and did all the research that I could and learned that basically the way I like to explain it to people is that my brain is just too big for my head. I feel like that makes me sound cooler and smarter than I am, so that's a description I'm going with. Basically what a Kyari malformation is, is that the back of your brain is compressed. The part of your brain that's compressed is the cerebellum. This part of your brain controls a variety of things, but it controls things like balance as well, which would explain all the issues I had. And people with Kyari malformations often have really bad headaches, muscle weakness. Kyari malformations are caused by structural problems, defects in the brain and spinal cord. This leads to your brain basically being squished. Now, like I said, this is something I was born with. Generally people who have Kyari malformations, it occurs during fetal development. There are a wide variety of reasons this can happen. It's estimated that one out of a thousand people actually have a Kyari malformation, but not everyone's gonna experience symptoms. So a lot of people are walking around having no idea that they have this condition because it doesn't actually affect them. But for a lot of other people, it is a very, very serious thing. It affects every aspect of your life and every waking moment. To current medical knowledge, there isn't anything that fixes it aside from having a pretty risky brain surgery. You can treat the symptoms, you can do your best to take care of it, but you're not in control of the compression in your brain. So when I was told that I had this, the only option that I was given was to have brain surgery. The kind of surgery that they do to alleviate this condition is pretty freaky. I've had a lot of surgeries in my life and it kind of weirded me out to think about what they would be doing. It's called a decompression surgery. So this kind of decompression surgery removes a bone at the back of your skull to allow there to be more space. I'm gonna throw some medical words at you and I'll link the article down below that I'm reading this from so you can have a better understanding of this if you're interested in it. So the dura overlying this part of your brain is opened and a patch is sewn in to expand it to allow space. They basically open things up and sew a little patch, basically like sewing something in to expand the way it spanned up your pants. Sometimes my pants need more space. In this case, my head needed more space. And so they sew in this little patch to create extra space. I have a whole video about this experience which I will link up above but I actually decided to have this surgery. It was recommended by the doctors that I was working with. They said, we think that this can alleviate your symptoms. It doesn't help for everybody. It can cause some problems because you are opening up a significant part of the back of your head and playing around in there. But for a lot of people, it does help. So I said, you know what, let's go ahead and do this. But the problem was they did another MRI just to confirm things before I went in had me shave my head for surgery and then when I showed up the morning of surgery ready to have the back of my skull opened up, they told me they were canceling the surgery because they weren't convinced that it was advanced enough that the surgery would help it. And if they were not really sure it was gonna help, it could cause a lot more harm than good and so they didn't wanna touch it. I was really upset at that point because I was like, I had this answer that was gonna fix everything in my mind and then it was taken away from me. But in the long term, I am glad that I didn't have it because I don't wanna risk brain surgery and the back of my entire skull and brain being exposed and opened up and sewn back together. If we aren't really, really sure it's gonna fix the problem. Quick warning, I'm going to pop some pictures up on screen of what the aftermath of the surgery looks like, like how severe it is. If you are squeamish at all, I would recommend skipping to this time stamp right here because you won't want to see these. But if you are interested in these kinds of things, it's pretty fascinating. My friends actually got me this stegosaurus hat before my surgery because they're like, you're gonna look like a stegosaurus now, which I thought was really sweet. The scars, the scars are pretty intense. Some symptoms have gotten worse in the last year for me. So I am actually getting another MRI to see if things have possibly progressed. It's not common that Kiari malformations will grow when you're into adulthood, but it is possible. Some things can shift and change and it can worsen. It doesn't get better on its own, that's for sure. So we're just checking in to make sure that everything is stable. Now, if you don't have the surgery, treatment usually looks like checking in every year or two years just to make sure that things are where they should be or not where they shouldn't be and doing your best to deal with the symptoms. So this is something that has sincerely affected my life in so many ways. Every day I feel not super great physically. I have some good days like today, I'm feeling pretty good. But even as I'm sitting here filming this video, I'm dizzy and nauseous and my head hurts. It's just at a level where I'm like, this is okay. This is fine, I'm functional. But then it'll spike and I'll have days where for 24 hours I can barely get off the couch. I can't move, I'm unreliable. I cancel on people, I don't make appointments because suddenly it's gotten so much worse. So things ebb and flow. I also sometimes have memory issues that may or may not be directly related to the Chiari malformation. I think a lot of it has to do with pretty much always having some form of a migraine. Neck pain is one of the biggest indications of a Chiari malformation and that's something I've dealt with my whole life. I think it's kind of a combination of the Chiari malformation and also the horseback riding accent I had that led to compressed discs in my neck. It's kind of a, they're working in conjunction to make me not feel great a lot. Things that I've personally found really helpful is exercise, it seemed to decrease some of the symptoms for me. Making sure I get enough sleep as to not trigger migraines. I have personally gone to pretty much all of the neurosurgeons and neurologists in Colorado and I went to the Mayo Clinic for 10 days to see if they could figure anything out. If there were any other conditions contributing to this. I was diagnosed with chronic subjective dizziness which is actually a thing. Meaning I get dizzy a lot because I do. But at the end of the day there are some medications that can help. It's really just pain and symptom management and something that you live with. People with Chiari malformations often have other conditions like Ehlers-Danlos syndrome which is something I'm actually in the process of getting tested for. I also deal with some motor function issues like every once in a while it's really hard to hold things. My fingers don't really work well like actually coming together and that is also related to having a Chiari malformation. Depression is also linked. I'm honestly not sure if that has anything to do with the chemical imbalance because I don't think Chiari causes that or just trying to deal with all of these symptoms often leads people to dealing with depression but either way it is also closely linked. But it is something that affects most aspects of my life. It's weird to be living with something that affects you so deeply, so severely but no one else can see it. That can be a little bit challenging. It's kind of like an invisible illness because it causes me a great deal of pain and distress but if you look at me I look totally fine. I look like nothing's wrong with me. It's just that my brain is squished in the back. It's taking a long time to learn what helps and what doesn't and how to emotionally handle it but after years of working on that I'm in a better place and I will continue always seeking to find better treatments or better ways of handling this in my life. So that's a little bit about my Chiari malformation. If you guys wanna know more about this please ask me questions down below. I would love to answer them for you and maybe do a follow-up video if there are enough questions about it. A huge thank you to my patrons over on Patreon who help support me in so many ways. If you're interested about what Patreon is or what it could do for you I will leave a link up on screen but thank you for spending a few minutes out of your day here with me today. I really appreciate it. I love you guys. I'm thinking about you and I'll see you in the next video. Bye guys. I've had a care in the world you see Have you heard from the sky? I'm tired.