Hi (wish I could greet you all by name),
My name is Dani and I am a 29 year old who just recently learned what an AVM even is. I learned this acronym after a 4 day stay in the ICU and after what was assumed by many doctors to be vertigo. Years of dizziness, loss of vision, and moments of deep confusion. during those years no brain scans were ever ordered.
This past August, I knew something deeper was happening. I could sense it. I had never had a migraine, I had never been so spatially lost and confused and had never experienced loss of movement of my legs to the point of full body spasms which resulted in temporarily not being able to stand. Unfortunately this was all happening as I was having to be strong as the maid of honor at my only sibling’s wedding. (Which put off me seeking any medical treatment) On the route back home from the wedding I lost all control of my hands, my right leg, and movements of the mouth. No one could understand me. I felt like I was communicating and thought I could hear the words, or more so slurs, coming out of my mouth. After seeing my pcp thinking again it was vertigo I left her office thinking, knowing this was different.
I went into a walk in ER clinic directly after seeing my pcp, where they gave me a CT scan… and to be honest I thought this was all a deep level of this vertigo, and a dumb expense I was having to pay because my boyfriend was scared or tired of me complaining. When the ER walk in clinic doctor came back into the room I could sense his new vibe. He explained to me I had recently suffered an active bleed in my brain and needed to go to the “real ER”, as they called it, and not now but 4 days ago. I sat in disbelief as they ran another CT, MRI and I waited in the ICU for an angiogram.
It happened so fast. What was a migraine and thought to be vertigo symptoms turned into the change I never imagined possible. All of a sudden an active 29 year old passionate single female worried about little things like sneezing; I have lost my peripheral vision. I have hope in my new medical team helping me but my insurance from a new job doesn’t start till Dec. every time I have a bad headache, everytime I have short term memory loss, and every time I have to use the restroom I am afraid.
I’m putting this out in the universe, just to say: Hi I’m Dani, I have an AVM, I have a date my insurance will kick in to help these costs, and the specific surgery day, but I’m also in a strange waiting period. Thank you all of being a part of chat boards like this… some of us are now new to this condition, medication, decisions, and fear.