Stroke caused by RCVS at 26
Starting the new year off with a "Bang"
December 31st 2013.
Every year my husband and I head down to Richmond VA to check in with all of our college friends from VCU (and also my high school friends, being that I was born and raised there). This New Years, we were running late and instead of being calm and relaxed, I was frantic and stressed. Instead of eating or drinking anything, I decided showering, packing, and worrying was more important. Around 1:30 pm, we were finally starting to pack the car. I had remembered all the delayed Christmas presents and made sure I had enough clothes if the weather went bad.....the dogs were all set to be watched for us by my husbands parents, who were staying at our house. I was reaching across the back seat to hang a garment bag when I felt a weird pain in my neck. Being 5'9", I often have my vision get blurry or sort of "white out" when I stand up really quickly, but this was different and didn't go away after a few seconds. My next thought was that it was my BPPV (vertigo) visiting me again, so I immediately sat down in the passenger seat of my car and laid my head back and then realized that this was something completely different.
I thought I had passed out but my husband told me my eyes were open the whole time and I was shaking. The next thing I remember, my husband is yelling at me "should I call 911?" And then I couldn't respond. About 30 seconds later, he was on the phone and I started to speak. I say speak, but really it felt like someone else was using my body. It was not my voice or my words and I realized my face was NOT cooperating with this whole talking thing. A minute later I realized my right side was also not cooperating. And then I thought "my god, my brain is working. Why isn't my body?!" I kept trying to tell him not to call, over and over "don't call!". I was embarrassed. I kept repeating "oh my god, I'm having a stroke." Over and over again.
The ambulance arrived 8 minutes later, while I was still having these symptoms. About 5 minutes later, I could close my right hand and my words were my own again. I even had enough gusto to correct my husband from when he had called 911...ten minutes after, mind you.... by telling him "I'm 26, not 27!" (Thinking back, what I probably meant to say was...thank you, I love you!). The EMTs loaded me up quickly and took me to the first hospital. I don't remember too much, because I had a giant towel on my head and couldn't understand why my head hurt so badly and I just kept repeating that I must have really scared my poor husband.
Very quickly, they got me checked in and I was in and out of a CT scan probably within 30 minutes of being there. They could see I had a sub arachnoid hemorrhage on the left side of my brain and decided it was time to send me off to Inova Fairfax Hospital(maybe it was once the vomiting started ;) ). I like to think of fairfax hospital as the cool Neuro mad scientist hangout area, and boy was I glad to live so close to it. Most of the next few days were a blur. Lots of tests, lots of family, lots of headache pain and nausea. I remember meeting probably around 30+ doctors! all seemed to be extremely intelligent and had wicked senses of humor! but couldn't give us any answers. It didn't help that I have never had a migraine in my life and that I was 26, the 2nd youngest patient to have ever been on that floor.
All the doctors seem to have a different opinion, but here are the facts: I had a "stable subarachnoid hemorrhage along the left sylvan fissure". The confusion comes from them being unable to determine where the blood came from. While they were rooting around, they found several pseudo aneurysms located on the top right side of my brain, but nothing on the left. The going theory was that it was an aneurysm that burst. The older doctors were convinced it was Vasculitis and the younger (more research driven) doctors said it was most likely RCVS and was due to my veins constricting.
After spending a week in the Neuro ICU, they finally moved me on to the stroke patient floor, and then on January 8th 2014, I was set free and given medication to treat both theories.
A few months later, I returned for a follow up cerebral angiogram. The testing showed that my veins had returned to normal and that they could no longer see any of the pseudo aneurysms.This was incredible news. They had determined that the treatment for RCVS had worked. I now have Migraines, but I am getting better and better at detecting them early on, every time. I also stay away from any medication that is a vein constrictor. Even though they couldn't tell me why the RCVS has occurred or if it would happen again, I know that getting the word out there about this condition will help raise awareness and hopefully answers will come with time.
I take satisfaction in knowing that I can talk and I can walk and I am alive. Answers would be great , but they aren't going to control my life. I thank God every day that I was not out of town when this happened and that my husband responded so quickly and knew exactly what to say to the EMTs. I could have easily decided I just had an awful headache and decided to lay down for awhile. The importance of knowing the symptoms of a stroke are LIFE SAVING.