Science and Emotion Collide

Hey Friends...

I hope the weekend treated each of you well.  I am excited today to post a little something different.  In 2006 I met a lady at work...she got the job I originally applied for.  She was much more qualified.  Honestly, I don't remember how we managed to cross seizure paths but thankfully, we did.  Shelby is brilliant and has a very detailed understanding of what causes her seizures, etc.  I admit, science is not my all.  While Shelby is very smart and has neurological details for days, she also has a wonderful balance of feelings and emotion.  Today's challenge: if you're a feelings person (like me), learn at least 3 scientific facts about epilepsy.  If you're a science person, write a few sentences about how seizures, epilepsy or hardships in your life make you feel.

I hope you enjoy Shelby's story; we'll likely be hearing from her again....

"I was 22 when I had my first seizure. It just so happens that I was babysitting for Neurointerventional Radiologist.  Come again?  Yes, that kind of specialist exists, and I had been their nanny for several years with no idea of my need for them outside of employment.  It happened quickly, right in front of the kids.  I woke up on the floor of the kitchen, confused, sweating, and with a splitting headache.  Lisa, their mom, was frantically wiping my head with a moist towel and speaking loudly into the phone to 911.  All I could think at the time was that I must have passed out from heat exhaustion.  It was the only thing that made sense to me on that July day as nothing like this had ever happened to me before.

Dr. Marx had other ideas.  He came home several hours later to a distraught family recalling a tale of their babysitter who “fell asleep on the floor in the kitchen and wouldn’t wake up.”  Frightening, I  know.  Since I hit my head so hard when I collapsed, the hospital had requested a CAT scan.  Still thinking I had fainted from heat, I wasn’t too worried about that or the several hours of ER time where no one told me anything, and why they wouldn’t let me leave.  It wasn’t until Dr. Marx showed up at the hospital that night that I knew something was really wrong.  It turns out, he had accessed my images from his home computer and saw something that needed to be explored.

After several more scans and an MRI, Dr Marx informed me that I had an Arteriovenous Malformation (AVM).  In Neuro-terms, that means a cluster of arteries and veins that have formed unnaturally sometime during fetal development or right after birth.  Blood can’t flow properly into the area, and typically they go unnoticed until enough pressure builds up to cause a bleed, a stroke, or in my lucky case - a seizure.

I never thought I’d say I was lucky to have a seizure, but on July 11, 2004, I am so thankful that I was watching Dr. Marx’ three children instead of whatever else my 20-something self would have been doing.  Driving?  Riding my bike?  Don’t get me wrong, not all of my seizures since then have been so life altering or lucky, and most the time when I wake up on the floor, there isn’t a nice mom leaning over me to make sure I’m ok.  But that’s life, and I am forever grateful for Lisa, Bill, Billy, Ali and Matthew Marx for helping understand and accept the way my life was going to change forever.

After researching possible solutions to treat my AVM, including a craniotomy (eek!), I found myself at UVA hospital in the capable hands of Dr. Steiner and his amazing staff to receive radiation treatment.  I underwent a series of non-surgical operations including an embolization to stop blood flow to the area, and the injection of biological glue to reduce the size of the cluster.  Once these were successfully completed, I was treated with radiosurgery with a tool called the Gamma Knife.  This non-invasive radiosurgery is able to target troubled areas (such as AVMs, tumors and other lesions) in the brain and spinal cord to dissolve them with radiation.

After receiving radiation treatment at UVA in 2004 and again in 2007, I am now AVM free, but not seizure free.  I consider this a pretty decent outcome considering the AVM could have killed me had I not collapsed in the kitchen at Dr. Marx’ house nearly ten years ago.  I try to remember this when I wake up in a strange place such as the airport, the grocery store, the floor of my office, or most recently, a New York City subway station.  It was as gross as you imagine.

It is always one day at a time, but I love my life and I refuse to let something like a seizure stop me from enjoying it.

-Shelby Thompson"

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