Walker Wednesday: Meet Nichole

What Is Walker Wednesday?     
 
Walker Wednesday is a day dedicated to stories of TAAF Walk-ers just like YOU!  Theirs are tales of courage, hardship, sacrifice, love and so much more detailing the odyssey faced by those affected by aneurysm and AVM.  Whether you TAAF Walk to express your joy, sorrow, lessons learned or simply the power of community, we hope you will see yourself in the sharing of these stories.

Meet Nichole Mcilvain     
 
Take it from us: Walk planning takes time, but no one has been preparing to TAAF Walk longer than Nichole. For over 10 years she's silently lived with her AVM diagnosis. Come May,  she will bring her story to a unique walk venue, to Cleveland Clinic where she will receive her first ever treatment. Heck, her TAAF Walk Team, including her doc, already have tees!  We'll let her explain.  Please enjoy her special tale; please Meet Nichole.


Meet Nichole

December 5, 2009 will forever be a day that changed my life. I don’t remember much from that night other than waking up in Allegheny General Hospital with several doctors around me. I was 22 years old and I had doctors I’ve never met before telling me that I had suffered a seizure, followed by the discovery of my AVM.  The first couple months I went to all of my doctors' appointments, which seemed like hundreds of them. The many doctors I had seen didn’t have the confidence to further my treatment and nothing had changed or affected my daily life. Being only 22, I didn’t understand the severity of my condition or how to handle what was being thrown at me. I spent several years neglecting to take my medication like I should, which lead to my most significant seizure yet. I came to sitting on our couch dazed, confused, and unable to close my mouth. I was later rushed to the hospital where I found out I had another seizure that had dislocated my jaw. Even after these bumps along the road, my outlook and treatment options had not changed.


Ten years later I was given a list of several doctors that came highly recommended. As I read up on each one of them, I came across Dr. Peter Rasmussen. I watched his video on the Cleveland Clinic website, and I just had a gut feeling this was who I needed to see. I made the call and went to that appointment with no real hope it would be any different than the previous ones. I couldn’t have been more wrong. He was unlike any doctor I had seen thus far. He said one sentence that changed my life from that day forward. “Not doing anything shouldn’t be an option anymore.” Just that one sentence scared me, really scared me. He proceeded to tell us what he believed was the best treatment with a confidence that gave me a new calm I had never felt before. I honestly didn’t want to leave the hospital without treatment being done right then. I went from whatever happens, happens, to a 60% - 80% chance to be cured. Going from 0% to that prognosis, seriously changed my whole attitude. Our 2 hour drive home was full of emotions. It didn’t take that long for my husband and I to agree this was the right decision. 

Until 2 months ago, I didn’t talk about this, I told no one.  I took my medicine and went along living like I had nothing holding me back. I convinced myself, if I didn’t talk about it it wasn’t really there and I didn’t have to deal with it. Deciding to get this treatment has been one of the most terrifying decisions I’ve ever had to make. If it wasn’t for the most amazing support group, I’m not sure I’d be this far. 


Love of her Life

Looking back, the past 10 years have been really hard and at times crippling. 10 years is a long time to hold something this serious inside pretending like it wasn’t controlling my every move. Talking about my AVM wasn’t something I was comfortable with. If I could just live my normal, or what I thought was normal life, then nothing was ever going to happen to me.  It had been so long I didn’t know I could feel any different... Until I married the love of my life.... The one that has given me the love and support that makes me feel like I can move mountains. I couldn’t be more ready to start the next chapter of my life.


 

My story doesn’t have an ending yet; it has only just begun. May 3, 2019 I will be getting my first, and what I hope will be my only, Stereotactic Radiosurgery treatment. With high hopes next year I will be walking this walk in San Francisco with the biggest smile on my face, both worry and AVM free

Nichole's Happily Ever After