Suzie K
Thursday, November 15, 2012
By: Suzie Kiddoo

Survivor

If you aren't aware of RCVS, take note!

It stands for "Reversible Cranial Vascular Syndrome." RCVS has only been recognized and diagnosed as such for about five years. It takes a very knowledgeable doctor to realize this isn't a classic migraine and how stroke plays a part. I know!

I was so excited: I had been asked to direct and host a talent show at our church and everything had come together perfectly! It was fun to get the acts, decorate, and then be the host, introducing the various acts and even participating in a few myself. Imagine my horror when I stood up and what later was described as a "thunderbolt headache" shot through the left side of my skull. I am a long-time migraine suffer but this was completely different than my migraines. The pain was so sharp and fast, it almost felt like I would collapse. I sat down when the first act was on, taking deep breaths and wondering what to do. I was in a lot of pain but "the show had to go on" so I got through it. Afterward, I found my husband and we quietly returned to our cabin. He went back to pick up our guests for the weekend and things went along "OK" for a day or so.

Another type of headache, more like an explosion in my brain came on and off for the next week. I was taken to a small hospital by ambulance near our cabin and told it was a migraine and sent home. We drove 2 2/2 hours to a hospital closer to our home ER and was told it was a migraine. We visited my primary doctor near home and you guessed it, "it's a migraine..." No one would listen to me. I had so many pain medications; it was really scary and nothing worked. Finally, we were advised to get to a trauma 1 center so off I went again in an ambulance. This time I got the correct care and diagnosis. A trauma 1 hospital has to have a neurologist available at all times and this was a Saturday.

Why is this a stroke survival story and why should you know about RCVS? Stroke and seizure are often and part of this disease. I spent a month in the hospital, three weeks in ICU, a few days on the "stroke floor" and then finally in rehab. I suffered a stroke and seizure while in the hospital and lost my left side for quite awhile. 

I am extremely fortunate because with rehab, I am doing very well. I did not lose speech or reasoning powers but having a stroke was very traumatic for my body and brain and I still am not "back" after nearly four months. I feel it is very important that the general public (and doctors!) understand this syndrome. I almost lost my life. My husband called it "black Monday" after my stroke because I didn't respond. Pretty scary and sobering stuff! If professional health providers had given me the right diagnosis, I may have averted the stroke and seizure. I am left with a disturbance in my eyesight but hopefully within a year this may rectify itself.

I am the most blessed person ever because I finally got help. I don't want anyone to go through this and feel knowledge is power...I am a survivor and want you to be, too.