Hi everyone I am Ciera peer support co-chair of Colorado Angioma Community Alliance. I am walking for a cure because, my cavernoma story started In 2000 at the age of 15. I blacked out, fell on top of the Christmas tree, knocked the tree over and woke up with the worst pain in my head I had ever felt. Then at age 17, I had a seizure while I was driving. After my first seizure I knew something wasn’t right. I was eventually misdiagnosed with having AVMs, three of them to be exact. After a few years I received the correct diagnosis cerebral cavernous malformations. We were told more than likely they were genetic due to fact that my brother, sister, father, and uncle and all had previous seizures. And my Grammie had numerous strokes (bleeds). 2006 was my first brain surgery to remove the cavernoma in my posterior right temporal lobe. This surgery was being performed with the hope of stopping the weekly sometimes daily grand mal seizures. The surgery was a success! I was able to fully stop the seizure medications after some time. I still had killer headaches “migraines". The neurosurgeon told me the cavernoma in my left frontal lobe was likely the cause of the headaches, and that when I am ready we should take that cavernoma out because it had bled many times. I waited 10 years because my headaches would disappear and then show back up and who wants to volunteer for brain surgery anyways. My second brain surgery was in 2016. At this point I had mass effect (swelling) in my brain from the left frontal lobe cavernoma bleeding. My surgeon had warned me that I would more than likely have problems with my right leg after the removal. I woke up not able to talk, swallow, or move my right side. The surgeons kept checking my brain for bleeding on the CT scans but nothing showed up but swelling. My journey quickly became focused totally on my recovery. The good news two years after the surgery, I have recovered or adapted to a new normal or still trying anyways. I have 1 other cavernoma in my superior right frontal gyrus, that has bled previously but has stayed stable for 12 years. Thanks to Angioma Alliance free genetic testing program I now know that I have familiar form ccm1- KRIT1. So please come walk with me or possibly donate for a Cure!
