I Am an AVM Hemorrhagic Stroke Survivor

By: Julia Magdei

In the 16th year of my life, I was living a life with no disabilities or disorders. I had excellent grades. I was doing a lot of extracurriculars. I had a passion for writing, music, dancing, and acting. I was in the top ten of my grade out of 1000 students. I was doing sports, like Tennis and Track and Field. I was part of the Class Office in high school. In middle school, I was in the Student Council, holding positions such as Student Body President of the school. I was playing piano since I was six. I was always singing in the choir. I was repeatedly placing first in Poetry Contests. I had done dance, like hip-hop, ballet, and gymnastics, ever since I was little. 

But, on September 18th, 2021, my life changed forever. I had a hemorrhagic stroke that was caused by an arteriovenous malformation (or AVM for short), which is a life-threatening, extremely rare malformation that lives deep in my brain. An AVM is an entanglement of arteries and veins. In turn, an AVM creates high pressure in veins that break down vessel walls and cause aneurysms. I didn't know I had this deadly disease in my brain. 

On the day of the incident, I was getting ready for a friend’s birthday party. Throughout the day, I was anxious. Somewhere within the day at my house, I felt a pop in my head. Honestly, I didn't think much of it. My primary concern was getting to my friend's house. I went on with my day. I went in the shower, picked my outfit, did my make-up, and baked some cookies for the party. When I arrived at my friend's house, the birthday girl said to set my gift in the dining room, and to make my way to the backyard. She said that I could grab a few snacks if I wanted to. I was starving, for I didn't eat anything the entire day. I picked up a plate with a few snacks, and I made my way outside. It all happened so fast. I was standing up, listening to one person, who was speaking of something, when my face began to droop on the right side. I also felt my right leg and right arm go numb with no sensation. Instantly, I panicked, as I quickly exclaimed, "What is happening to me?”. But, what I thought was going to be my usual voice turned into slurred speech. No one could understand me. I started to fall from both shock and paralysis, but by a miracle, I fell on the couch. I was unconscious instantly, and I didn't wake up until a couple weeks later, with no voice whatsoever due to my language area becoming destroyed, and half of my body having paralysis.

I was at Stanford for three months, where I was desperately fighting for my life. When I finally was able to get a sense of where I was, I was terrified of what happened to me. I couldn't speak anymore. For a month, all I could say were simple words like “Momma”. I have spent hundreds of hours regaining my speech. But, it is not the same as before. Before, I had an extensive vocabulary. Now, I have a brain disorder called Aphasia, which means that I lost my ability to process and express language. I have to spend extra time comprehending the information compared to everybody else. For example, it's now difficult for me to read, which used to be easy for me. I can still do it, but it has to be at a slower pace with patience. Every person that has Aphasia is different. It all depends on their level of fluency, comprehension, repetition, and more. Some people cannot write out what they're trying to say. It's easier for me to do just that, but once again, every person is different. For people who are speaking to a person that has Aphasia, be aware to allow as much time as needed, avoid multiple distractions, and allow them to tell you what ways to help them communicate with you. All the people that have Aphasia were not born with it. It happens because of a stroke, brain tumor, head trauma, or infection. However, please be sensitive: it does not affect a person’s intelligence by any means. 

Another thing that negatively happened to me because of my stroke was my body paralysis. I have right side hemiplegia. “Hemiplegia” is one side paralysis. “Paralysis” is the loss of the ability to move and/or feel the body. I also suffered a very rare complication in the hospital that resulted in a bypass surgery of my femoral artery. Because I had to have two open brain surgeries (craniotomies), three embolizations (other procedures), and a lot of blood that leaked into nine centimeters of my brain when I had the stroke, my paralysis is really strong.

In the first weeks after my stroke, I had to relearn to swallow, chew, drink, eat, speak, and more. When I came home almost 3 months later, I was only able to sit in a wheelchair. For the last year and a half, I had over 500 doctors and therapies appointments. I have worked extremely hard and for many, many hours to regain functions of my body. Even though I still have no feeling in my right arm, hand, and foot, I am walking with a cane.

Unfortunately, as of now, I can't run, dance, ride my bike, or play the sports I used to love. I miss doing cartwheels and dancing in our living room. My mom and I used to do that (she skipped doing cartwheels though) at the end of every week to celebrate us getting through the week. There are a fair amount of things that have no movement at all, namely my right arm and hand. This is very emotional for me since I used my hands for my daily life. I can't play piano with two hands because I can't use one of my own hands. I can't braid my hair anymore because it requires both my hands to do so. I can't zip up my jacket if it's not already zipped up to begin with. I can’t peel anything because it’s hard to, and I can hurt myself. The list goes on and on. A lot of us take our hands for granted in our day to day lives. I found ways to adapt to my situation, but it's so heartbreaking to witness this first hand.

Now, another deficit that I have is peripheral vision loss. “Peripheral vision loss” or “tunnel vision” is the loss of your peripheral sight. Essentially, I can see what is right in front of me, but nothing on my right side. I was seeing double vision for a long time. I have to be extra careful when walking into the school because a lot of students don't understand what I have gone through, and what I'm still going through now. I was not at school for a year after I had my stroke. Now, I am only going half time, and it is challenging going back to school after what has happened to me. Because I can't see almost half of the world anymore, students bump into me sometimes, so I always have to have an aide with me to make sure that I'm safe. My ophthalmologist said that once the neurons in the vision field in my brain die, they don’t regenerate anymore. Because of my peripheral vision loss, I am not able to drive. Whenever I try to read a tiny book, I have to squint. Furthermore, sometimes I don’t scan all the way to the right on the page, and I miss the whole meaning of the sentence. I have to be aware of my surroundings before I take a step, so that I don’t trip and fall. A fall could be really threatening to my life especially if I hit my head, considering I have this AVM in my brain. 

A great deal of people who I thought were my friends disappeared from my life completely when I had the stroke. Only a couple friends stood by me when I came out of the hospital. My mental health is suffering because of this factor. Also, because I am a teenager, I put a lot of emphasis on friendship. When I went back to school a year later, no one asked me where I had been for a year. I thought that society would be different when I almost faced death, but as it turns out, it’s not. 

My family and I are constantly worried that I can have another stroke. I still have a dangerous AVM in my brain because it is in an inoperable area of the brain to access, called the thalamus. My doctors cannot remove my AVM, but they embolized many aneurysms to keep the AVM stable for now. In July of 2022, I was a patient at UC San Francisco Hospital where I underwent gamma knife radiosurgery that is meant to hopefully shrink my arteriovenous malformation. I have to wait three years before I can know if it worked. It doesn’t work for everyone. We are praying daily for a miracle in the complete obliteration of the AVM. In the meantime, I mustn't get upset and anxious at all, for I can have another stroke as a result (and especially since I also have another aneurysm recently discovered). But, as a person, I have emotions and feelings too. However, I just have to learn how to control them. I hope that everything is going to be given back to me, even though it is going to take some time. If I just keep pushing every day for recovery, maybe miracles will happen. Though my emotions are filled with sadness because of the damage my stroke has done, I have hope that one day, everything is going to come back to normal. My biggest desire is that I will be AVM free one day because it is not easy to live in uncertainty daily.

I hope that none of you will have to face what I suffered and still do suffer through daily. But, I like to think of myself as a rational person who knows that it can happen to anyone. That is why I am doing this story: to raise awareness of my rare disease. My family and I have a YouTube channel, an Instagram page, and a Facebook page called “Julia’s Journey to Healing”. One of the earliest videos is of me and my mom bringing awareness about the signs of stroke.