Hello all! I’m so grateful to have found this community. I had a left posterior cerebellar stroke in September. I’ll start by saying I was diagnosed with a dural arteriovenous fistula in 2018. I had a bruit in my left ear which lead to the diagnosis. It wasn’t supposed to cause harm, but two years later it did. It developed cortical drainage, which isn’t good. A couple months before the event, I was having increased migraines and I just figured it was stress. Labor Day weekend I got one, along with some slight dizziness and heaviness on the left side of my face. I felt better later. The next week I was hit with the awkward dizziness, like I wasn’t in my body, and severe anxiety. I went to the ER and hours later a CT revealed a clot in the jugular bulb. MRI showed no bleed or stroke, and I later had an angiogram so my fistula could be assessed. They said I had great blood flow to and from the brain, so they wanted to schedule me to come back to close it, and they wanted to decide which vessel to embolize. Well, five days later I was back with the odd dizziness. CT revealed the stroke. I passed all stroke tests during assessment. My fistula was closed the next day. I’ve had a repeat angiogram that says it’s still closed. A couple of recent CTs and MRIs show nothing new. My anxiety was horrible, but is improving. However, the dizziness flares up sometimes with no exact trigger. From what I read on here it’s common to experience this after, but it’s worrisome because that was my only symptom! My migraines and headaches are frequent, and I’m supposed to start getting Botox for them this month. I have no deficits other than the residual dizziness. My headache Neuro doesn’t think I need an inner ear work up, but a doctor in the ER suggested it. I’m going to the stroke neurologist next week to see if they’ll refer me to our Balance Center (I’m a nurse at the hospital where my doctors are).

I just wanted to thank you all for sharing your stories. While reading many of them it was like reading my own thoughts. Finally I’ve found a place that others know what I’m going through. I’m fortunate to not be any worse, but this has been a struggle. I’ve been in contact with a couple of people on here, and look forward to hearing from others.

Jump to this post