I have had Epilepsy my whole life. If I knew then, what I know now, I can only assume that my life would be drastically different. Since I can’t go back in time, At least I was able to start capturing some thing’s, a few years ago.
My seizures were never under control with meds. I tried almost all seizures meds. It wasn’t until my 20’s when I had a seizure driving & totaled my car that other options had to be considered. Thankfully I was OK & didn’t remember anything except the paramedics asking me questions.
In 2004 I realized that had scar tissue on the right side of my brain, from ALL THE SEIZURES I had during my life. (This in real terms is brain damage) In 2005 I had my first brain surgery. The neurosurgeon was supposed to remove the scar tissue & my amygdala & hippocampus. Unfortunately the neurosurgeon did not remove everything & my seizures never went away.
It wasn’t until a few years later that I thankfully found my awesome neurologist! It took most of my life, to find a neurologist who treated me like a real person & genuinely wanted to see my independence come back to me.
In 2011 I had my 2nd brain surgery. This surgery was at a different hospital, than my 2005 surgery. This time to basically finish the job, from my 2005 surgery.
This surgery was the most painful time of my life! The pain was excruciating!!!! My head was so swollen & a few months later, I returned to the same hospital to have my 3rd & hopefully my last brain surgery. I was released much too soon, with still horrible pain & swelling. Only to come back again! The neurosurgeon had to remove spinal fluid, so that the swelling would go down. A lumbar drain was put in to help. When the drain was removed, the pain was again excruciating & it turned out that the removal, cause nerve damage.
I never thought I would have more than 1 brain surgery in my life. But I did. I can tell you that I have been seizure free since 1/27/11!!!!! WHoooo whoooo :) I still knock on wood all the time! However, I will never say I’m cured. That’s not really a term people w/ epilepsy can use. I will always have epilepsy! But Epilepsy won’t have me!! As long as I’m seizure free, I don’t mind having epilepsy.
Don’t get me wrong, I know my life would’ve been so much different if I wasn’t having so many seizures. But I can’t go back in time, so for now I hope to be seizure free forever! I will always advocate & help others living w/ Epilepsy! It is my duty :)
My journey hasn’t been easy or pain free. I’ve had to start my life over again. I will always struggle w/ horrible memory loss, & many other issues. But I have to keep remembering that being Seizure Free is an amazing thing!
With help from a supportive network of amazing friends & determination, I am here still fighting & so can you!!!