Let me start by saying: I can’t believe it’s taken me this long to find this website.
I will be 10 years post-bleed next May, and it’s made me realise just how grateful I am to be alive.
I was nine years old when my parents drove me to the hospital because I had passed out while eating at a barbeque joint here in Omaha. I was diagnosed at the hospital with a right parieto-occipital lobe AVM. I hardly remember any of that day. I was given a ventriculostomy in the front of my head to drain the blood that resulted from the bleed.
After being in a medically-induced coma for two days, I woke up and my mom explained to me what had happened and where I was. I later learned she had had to do this several times when I partially awoke from the coma and tried to yank out the breathing tube.
After being in ICU for about two weeks, my neurosurgeon preformed a craniotomy and embolisation. I was released from the pediatric ward of the hospital about a week later.
About two years after my bleed, I had an angiogram done to make sure everything was good in my brain. Unfortunately, I ended up having to go through gamma knife surgery. After an MRI about a year after the radiation therapy, I was cleared to come back in five years for an MRI.
When I came back for my MRI in March of this year, my neurosurgeon gave me a choice. He said they could perform an angiogram despite there being no signs of any AVM recurrence in the MRI, or I could go about my daily life and he would order an angiogram if I ever asked for one. I chose the latter.
The AVM affected my sight on the left side of my peripheral vision, making it so I am missing roughly 40-50% of my vision. I am unable to drive, and I frequently run into things that someone without a visual field cut would be able to see. But other than that and a big dent in my skull, I’m doing pretty well!