The AVM experience – What it’s like to have a stroke at 22

This has been swirling around in my head for about the past week. I kind of quickly shoved it back as soon as I was alert enough to realize what happened to me back in January, but now I feel like I should speak out about every little detail.

Sunday January 17, 2010  around 9:30 p.m. I had just finished getting ready to go out with my friends to our regular Sunday karaoke bar. I left my apartment feeling normal, I rode in my friend’s car to the bar feeling normal, I walked into the bar, and I started to drink like normal. I had put my usual song in to sing (Portishead-Sour Times) and found my way back to where my friends were hanging out.

We sat around our table, bullshitting like we always do, and having a good time. Soon I was called up to sing, but just shortly before that happened I started feeling a pressure in the top left of my head which traveled down to the end of the bridge of my nose. I had felt this same thing about two years before while out grocery shopping once, but it was a very very light sensation that went away on its own so I continued on with life.

As I continued singing the pressure started to turn into a pain. I tried to ignore it thinking it would pass, but the more I kept going the more pain came. I got to the point where I was less able to focus on the words on the screen, or even remember what I was singing anymore. Somehow I made it through my song, and sat back down at the table in a quiet state of shock because I had no idea what was happening to me. I have a problem with anxiety disorders, and I did not want to provoke myself into a panic attack even though it was getting past the point where I felt in control of what was happening within my head. I did not want to freak out the rest of the bar which is a small place where most of the crowd knows each other, and the last thing I needed was people smothering me asking what was wrong.

I casually texted a friend and asked him if he was coming out to the bar, but I quickly noticed that for some reason when I looked down at the screen of my phone I couldn’t see my thumb or my index finger there touching the buttons. I thought that I was maybe causing this by panicking (I had about given up at this point on trying to control it), so I tried to make sure breathe, but nothing was helping. Shortly after, I started seeing a small triangle shaped pattern that had mini orange triangles inside of it, and was sort of “flashing” in the bottom right corner of my right eye.

I let the friend sitting next to me know what I was seeing, and that I didn’t feel right. She had dealt with my anxiety before , and has a general idea of what to do when I am freaking the hell out. We both went outside, and at that point I couldn’t even keep my breathing straight anymore. I was hyperventilating, and trying to force myself to cry because for some odd reason sometimes crying helps me get over my attacks.

I was too nervous about what my body was possibly doing to itself that I couldn’t even force myself to cry as much as I wanted to and tried to. My friend asked me if I wanted to go to the hospital. I told her no, and that I just wanted to go home to shake this off. It kept getting worse. All of it. The anxiety, the way my head felt, and the flashing shape in my eye were just feeding to the anxiety problem. I have rarely ever had it reach the level where it’s beyond controllable, and it did get to that point that night. Thankfully , my friend decided it was time to go to the hospital anyway after discussing that my mother had and still has problems with migraines, but I never had before in my life.

Everyone (by everyone I mean a guy friend who drove us to the bar, his girlfriend who is also my friend, and another girlfriend of ours) quickly packed into the car, and it was off to the hospital with me. I tried calling my mom to let her know what was going on , but she didn’t pick up her phone. Later in the night she noticed it was my number that popped up on her screen, so she texted me saying she thought it was one of her friends calling to bug her, and asked what was up.

At that point I was already at Clarkson Medical Center’s 24 hour urgent care building out west. I remember walking up to the counter, handing the man behind the desk my insurance cards, and trying to fill out the paperwork. I was so disoriented at that time that I could barely even state my name to the guy, when I was born, or my social security number. I had to think really hard to complete such a simple task such as writing in the information needed on the emergency room papers. It got to the point where I just passed the paper over to my friend and asked her to fill the rest out for me.

I was quickly called back to see the nurse who asked me to describe my symptoms to her. I was still in full on panic mode, feeling like I was barely able to function. I was doing my usual nervous habit of shaking my legs, but I was doing it so bad that she had to remind me to settle down so that I could continue to tell her what was wrong. As I told her what was going on with my eye, and the headache I felt, I noticed the right eye went slowly back to normal, but in my left eye I was seeing a blurred transparent circle. Almost like a cap covering my pupil. I remember telling the nurse this , and about jumping out of the chair because I was that terrified. I had no idea what was going on or what to do and felt like I was losing all control.  Right after I jumped out of the chair, it suddenly felt like someone had stuffed cotton balls in both of my ears, and I could barely hear the nurse asking me any of her other questions.

I was sent back to the little check up room, and waited for a doctor to come in to take a look at me. Keep in mind hospitals have always made me nervous, and I hate setting foot into them even if I’m not there to see a doctor. Being in that room experiencing what I was (at this point the orange triangles had come back) was only bringing my anxiety levels right back up after I had just calmed down a tad bit. I panicked so bad from just waiting in that room for what felt like an eternity, that I decided in a dazed and almost unconscious state it was a good idea to get up and leave that hospital room by myself to get my friend for comfort.

I got out of the room, and started to make my way down the hallway. But something was wrong. My legs weren’t moving properly with my body at all. I was literally dragging dead weights underneath me that I had absolutely no feeling in. The tops of my feet were dragging on the ground too as I tried to focus on my walking and how to take steps…bring one foot up, bring the other foot up. Left foot , right foot, left foot , right foot. It was almost like dragging a puppet through a hallway, but not pulling it’s feet off the ground to make it walk correctly. I somehow miraculously made it to back up to the waiting room door, but the receptionist caught sight of me  and asked, “Whoa! Where are you going?”

I explained to him that I really needed someone back in that room with me for comfort, he kindly asked me which person I wanted, and all I remember telling him was “the girl with the dark hair.” He went and got her after getting me back to my room, and somehow she managed to calm me down entirely. I was starting to get drowsy, and just sat with my back up on the bed ’til I felt like I wanted to lay down.

We chatted for a bit and tried to take my focus off of what was going on, but soon my stomach became uneasy.Thankfully, I can always tell when I’m going to vomit because my throat sends me nice little warning signs. My friend managed to get a nurse in quick, and I violently threw up into the tub a nurse was holding in front of me. When I say violently I mean it too. I had to have my entire face wiped off, and I almost couldn’t breathe through my nose because the force I had was just pushing the puke back up into my face.

I was given medicine for nasuea, and had been ordered a CT scan because if this had been a migraine it would’ve been my first. About five minutes after the vomit scene, a man came with a wheelchair to take me back to the CT machine. I felt like I was falling in and out of it, and to this day I’m not sure if it was because of my condition, the anti-nasuea medicine, or possibly both. I laid there on the bed in absolute silence, and I remember the scan not lasting more than five minutes before the guy silently helped me back onto the wheelchair.

On the way back to my room I began to feel worried again because I noticed how fast the guy was wheeling me through the halls. Neither of us said a single word, which of course led me to believe something was wrong. I can remember thinking to myself repeatedly to “please let everything be okay”.  Shortly after I was dropped back off to the room, a woman came to the door and in her calmest most upbeat voice informed me, “We’re going to take you down to the medical center (UNMC) because your CT scan shows some bleeding in your brain, and they can figure out exactly what it is going on when you get down there. okay?”

My heart sank and my mind tried it’s hardest to race in my delirious state. I had seriously thought I’d be going home that night with some migraine medication in hand, and that everything would be fine again. Instead I was being wheeled down the hallway yet again, but this time it was to the exit doors to be loaded into an ambulance. I was starting to feel out of it and drowsy, and I was thankful that they allowed my friend to ride in the front seat while the other paramedic sat in back with me. Hearing a familiar voice made me feel comfortable enough to calm down, because at that moment and time I was facing on of my biggest fears ever(having to ride in the back of an ambulance strapped to the stretcher). I closed my eyes, and off we went to the University of Nebraska Medical Center. The longest car ride of my entire life even though in reality it’s only about twenty minutes.

We finally arrived at the hospital, and I remembered feeling the cold winter wind for about two minutes before I was inside staring up at the flourescent hospital lights. I kept wishing I was going to be okay. Before I knew it I was finally in the ICU on the 8th floor (neurology cases).

I barely remember being stripped of my clothes and quickly thrown into a hospital gown. I do remember hoping that it would all be over tomorrow, and that I would be back in my comfortable apartment with my familiar surroundings. I do remember four of my friends (the driver of the car we came in followed the ambulance to the hospital) standing at my left corner by the door as several different nurses hooked me up to IV’s and checked my vital signs. The very last thing I remember before falling asleep that night was my girl friend asking her boyfriend if he needed to leave the room (hospital rooms make him queasy), watching him say yes and walk out, listening to her state to the nurses that he’s a medical courier which made it ironic that he couldn’t stand hospital rooms. I remember hearing laughter about his situation, and  listening to another friend tell me to be strong before they all left the room for the night.

My friends informed my mother later that night that I was in the hospital because I never was able to respond to her text after all that had just happened within the past two hours. They also informed a few of our good friends from the bar who had noticed my sudden disappearance  and were texting my phone asking where I went, letting them know my situation and what was going on.

My mom and my brother arranged for a flight from California as soon as possible, and arrived on that Tuesday (the 19th). It was on that day that I had an angiogram, and that day that they discovered that I had an Arteriovenous Malformation (AVM) in the left occipital lobe of my brain. Something I was born with, but it (my brain)finally couldn’t take it anymore for some reason, and bled about the size of a half dollar causing a hemorrhagic stroke.  I am not paralyzed or anything surprisingly, but I am an extremely lucky case.

Coming soon: It’s not like it’s brain surgery! Wait…yes, it literally is.

3 thoughts on “The AVM experience – What it’s like to have a stroke at 22”

  1. Hi, You are just like me. I also have had my feet dragging like they are not my own. I t is sometimes the beginning of a seizure. I have a very large cerebral avm. I hope you are ok. You can contact me if you like.

  2. I am doing pretty good this far down the road, all things considered. Have you been to or are you on the site http://www.avmsurvivors.org? it’s a great site filled with helpful people and subjects for friends of, families of, or those who are avm survivors themselves. it has helped me greatly through my avm journey, and i still frequent the site quite often!

  3. My 27 yr old brother is in neurology icu at vanderbilt hospital in nashville tn. He has an avm on his front left lobe of his brain. So far they are trying to stabilize him…I’m just looking for some hope. Tell me what to expect and that you have went on to live your life.

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