My Story 

I’m here because i Survived my brain rupturing

On February 7, 2022, after

• 2 ambulances

• 2 hospitals

• 1 helivac

I was finally treated for my AVM - which led to a massive stroke - which left me with right hemiparesis and aphasia.

I am an AVM Survivor and this is partially my story…

I have kept a journal that I look OCCASIONALLY back on…

1/23/22 - Woke up with a horrible migraine that lasted the entire day. Have very little energy and noises feel extra loud. Talking takes lots of energy. I’m so tired and just feel blank. Like no emotions except tiredness. I also am more emotional. I know it’s contradictory, but I can’t explain it. 

1/24/22 - Even thinking feels exhausting. I’m a little clumsy and my body is so tired/a little sore. I’ve dropped brooms, hit my body on doors, dropped my AirPods and they went into the -80F freezer at work. Now it’s after work and I literally cannot make words come past my throat. It’s impossible. Like the idea of saying anything is exhausting and I’m not even able to get words out when I’m by myself. I did talk in a brief whisper though when I saw Bleu after work and said, “hello” but that was a struggle. I’m also more sensitive to noise, music feels too loud and there were certain things at work I couldn’t tune out (crunching a napkin, footsteps). I’ll probably speak when my mom gets home though. Although I do feel as if I’m being overly dramatic. My nose is also more sensitive today and I felt slightly nauseous and at some points briefly dizzy. The weird thing is that I hung out the night of 1/22 and it’s 1/24 when I feel more sensitive. It’s like it got worse as the following day(s) went on. Literally any talking I did today, even if I was singing to myself for 2 min. resulted in a headache. Everything resulted in a headache.

1/26/22 - End of day at work and I’m so slow my brain feels like mush. My coworker was saying something while looking at me and I was staring at her and asked “you talking to me?” and my supervisor asked me a question and I just stared into his eyes cause I could not process what he was saying. Everything felt sluggish.

1/27/22 - Spent the day with an excruciating headache. Am really tired and slightly nauseous. Feeling slightly dizzy and sounds are too loud. Headphone are on the softest sound, and high pitches make me have a full body clench. My head weighs 200 pounds-respectfully.

——

I think that 1/23/22 was the first day I had that something wasn’t right with me, I mean physically something that feel right. I was dizzy, nauseous, clumsy, and I couldn’t speak. I didn’t realize that those weeks were the following weeks before I had the massive stroke. In hindsight, my vision is 20/20 and I should’ve gone to the hospital. But I thought I was being overly dramatic.

On Monday, February 7th 2022, I did not show up for work. My friend was concerned, especially when I didn’t answer the phone the night before. She told my supervisor, and my supervisor called my mom. My mom tried to call me but I didn’t answer. I was dog-sitting, so I was by myself; not the best time to be alone.  After a little bit of phone tagging between multiple people, we reached their son. He raced over to his parents house to see what was going on. I did not answer the door, once he entered the house he did not see me in the family room or kitchen. He then started searching the whole house and found me unconscious laying face down in the bedroom; which led him to called the ambulance.

The paramedics had no idea what happened to me, seeing that there was nothing “physically” wrong with me. The next best thing was treating me with an overdose, since my eyes were unreactive to light and getting me to the hospital. The first hospital, Rochelle, IL, it was discovered I had a brain bleed. They didn’t have the proper equipment to treat me, so they helivac me to Javon Bea Hospital —Riverside, Rockford, where I was then treated.

It was found that I had an AVM and my brain “exploded.”

Dr. Alexander performed a craniotomy thus I was kept in an induced coma for 5 days. I had a tracheostomy, which means I was not manually breathing, but through my neck with a ventilator. I also had a G-tube to get food to my stomach because my vocal chords were partially paralyzed.

AVM (Arteriovenous malformation) was something that I was born with. I had no symptoms outwardly, but I had a lot of internal symptoms, one of them being my headaches. An AVM is where all the arteries and veins get discombobulated, impeding blood flow. Fewer than 4% of AVM hemorrhage, or in other words, bleed.   

In my case, it happened in my left frontal lobe that bled. Here are two pictures, taken a year and a half after my stroke. It shows where my dead spots are, which are completely black. That means that the black matter will never heal. I have to find a “different route,” if there is one.

Due to the location of my hemorrhage, hemiparesis and aphasia were a symptoms of the stroke.

Hemiparesis is different from hemiplegia. 

Hemiplegia = one side completely paralyzed, where as hemiparesis = one side weakness.

While they deal with one side of the body; the left brain controls the right body, the right brain controls the left body, the difference lies in severity. When I came to, I was paralyzed on the right side of my body, which is called hemiplegia. 

I now have hemiparesis, which means I have some weakness. I can walk, but I can’t extend my wrist and my fingers. On the walking scale, I would say 6 out 10 on the balance scale (10 the worse and 1 the best). Walking, I can only go short distances (<2 miles) without assistance. If I want assistance, using my cane, I can go longer (>2 miles) because my stability and balance improve.

There are multiple types of aphasia. My aphasia was so bad when I first woke up; I couldn't pronounce words correctly, or at all, I would get stuck on a word, my sentences were extremely short, spelling was non-existent, etc. I have awareness when people talk to me, but have problems expressing what I want to say, which was extremely frustrating. I believe I have broca aphasia. After months of therapy, my aphasia has gotten much better.

On March 1, 2022 I went to Shirley Ryan AbilityLab, Chicago, IL and stayed in their dorm until March 31. By the way, I did spend my 23rd birthday in Shirley Ryan.

Once I left Chicago, IL, I was able to go home and spent 7 more months at Shirley Ryan AbilityLab Outpatient. For 6 months - I was there, every single day, 7 hours. It was tremendously exhausting, and hard. Shoutout to my dad and mom, they basically drove me every single day, with an hour drive there and an hour back. I worked on physical, speech and occupational therapy. I worked in Outpatient till Nov 4, 2022.

I went regular therapy until April 2023, I quit going to therapy and started an at-home program.

In summary:

• 8 months of intense physical therapy, and 6 months of regular physical therapy. Now, working out by myself.

• 1 year 4 months to get my job back part-time.

• 1 year 5 months I got license back. This time, I use my left foot instead of my right foot to drive.

It was extremely challenging, difficult, and exhausting, to put mildly.  

Photos after my stroke