Twenty-five years ago today 11/7/87 I had my first bleed, presenting itself with a first-time generalized seizure @ age 28.
Up until then I'd been a healthy young woman unaware of the life-changes awaiting me.
Following the seizure, 911 was called and I was taken by ambulance to a hospital. After arriving to the hospital, a CT scan was performed. And while I laid in the CT scan, I overheard a technician tell her co-worker that, "she" (meaning me) has two abnormal spots in her brain. OMG, I thought they couldn't actually be talking about me and thought to myself that "if they'd just let me leave this hospital, I'd never, ever have a seizure!"
I spent 1 week in the hospital undergoing and awaiting test results, including an MRI which confirmed I had two spots that could either be: brain tumors; AVM's or possibly something of a parasitic nature. I was scared out of my mind!
Since nothing further could be done, I was allowed to go home.
Approximately 1 mos from hospital discharge, my tests concluded I had "arterioveneous malformations" - a diagnosis I was clueless of, yet carried around a scratch paper with the diagnosis name spelled out to relay to family, friends and inquiring minds.
Back in the 1980's, little was known about AVM's let alone cavernous malformations, CM's. And since CM's do not show up angiographically, they were once called: angiographically occult (unseen) AVM's.
Fast forward to making the decision of where to go for treatment. Since I have a non-biological step-sister with an AVM, she highly encouraged me to consult with her neurosurgeon, world-renown, Dr. Charles B. Wilson of UCSF (now retired.)
Surgery was scheduled and the night before surgery of 1/29/88, I innocently thought to myself, "tomorrow @ this same time this will all be over with." Wow, was I in for a surprise!
Little did I realize then the impact of harboring multiple CM's & what this would mean for my future.
Twenty-five years later as I reflect, had it not been for CM's and the direction they took me, I doubt that I'd be the strong, proactive woman I am today. And since we as patients learn, grow and gain from one another's experiences, I would not have acquired a few life-long friendships, along with knowledge I've gained from them.
I also feel grateful for being in the right care and direction of my two brilliant neurosurgeons of past and present: Dr. Charles B. Wilson of UCSF and Dr. Gary K. Steinberg of Stanford.
My spouse & soulmate, Rick whose stood by me throughout the many rough, unpredictable, scary roads of this journey, I am forever thankful to and cherish our relationship all the more for his own strength, love and endurance.
It's not been an easy 25 years, yet in many ways I feel truly blessed.
Patti