I just turned 15 years old when I had a hemorrhagic stroke caused by an AVM on March 7th, 2016. I suffered from migraines and chronic headaches for almost a year beforehand, but they were always set aside as part of being a teenager. After feeling a migraine come on, I stood up to get medicine, only to find that I couldn’t feel the left side of my body. After seven hours of laying on my bedroom floor throwing up, my dad thinking this was just a normal migraine.
I was taken to the emergency room where they did CT scan and found a large bleed in my brain. We were sent to the local children’s hospital for further treatment. At the children’s hospital, they did a CT scan with contrast and found what they suspected to be an AVM. The children’s hospital sent me to the adult wing of Barrow Neuro Institute down the street to confirm, and barrow ended up doing 4 surgeries, an angiogram to confirm the diagnosis of AVM, an embolization to stop the bleed, a craniotomy to remove the blood, and a pressure monitor and CSF drain placement to monitor and relieve the pressure on my brain. I was then sent back to the children’s hospital where I woke up the next day. I had no recollection of any of my bleed. I spent 7 days in the PICU, working on basic functions like sitting, standing and turning, and then I was moved to a regular floor to await rehab approval, while I continued to work on walking and strength. After a week I was denied rehab and sent home.
After a fall where I hit my head, I began working with the Anat Baniel Method, where I gained neuro pathways through gentle movement and imagination. I was trying lots of different therapies including traditional physical therapy, NeuroOptimal, and chiropractic work. I also began working with a psychologist to cope with the depression and anxiety.
I was treated with GammaKnife in June, and 5 months after my stroke, I started high school in a new city, where we decided to begin working with a speech-language pathologist to improve my social skills.
Before my stroke I enjoyed music, playing violin, recorder, and teaching myself how to play the piano. I loved math and I was good at it. I also enjoyed history, but didn’t care for science or english. I was learning Latin, which I enjoyed a lot, but it was not a passion. I was very introverted, which made making friends difficult, but once I found a good friend, we tended to become very close. I was attending a charter school, and despite the advanced curriculum, I found school pretty easy. I also enjoyed boating and kayaking (on Arizona’s many lakes and oceans!) I was very organized, and very much a perfectionist.
After my stroke, my life was basically just therapy, as the case in many stroke patients. Many of my friends became distant, and I stopped going to school because I was overwhelmed with everything that I had on my plate. My summer consisted of Gamma Knife preparation, the Gamma Knife procedure, and Gamma Knife recovery. We found a public school that would accommodate for my needs, and help me move back into a normal life. I started back at school full time, in all honors classes, five months after my stroke. I eventually discovered coloring, and spent a lot of time coloring really detailed images that I found in coloring books that people gave to me while I was in the hospital. I have found a passion for working with little kids, and learning about the human brain. I will be participating in an early college credit program next year, earning my associates degree when I graduate high school with all expenses paid. I still struggle to make friends, especially given my history.
After a year, I have overcome some aphasia, regained almost 100% of my movement and sensory in my left side, and improved my ability to read and produce emotion. I still struggle with minor coordination issues and a lack of intense facial expressions, but I have made almost a full recovery in a short amount of time!
The Joe Niekro Foundation wants to thanks Heather for sharing her story with us. We are incredibly happy to see such a young survivor being able to enjoy life again!
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