Life After (?) PCS

{ Editor’s note: I have known Marianna Consiglio for what seems like forever now. She shared her story (viewable HERE) with us in 2013 after being featured on ABC News and we have remained in fairly constant contact over time. Three years later, she has an update and some reflections for us. I can’t tell you how proud I am of her perseverance throughout this journey.– Jay }

By Marianna Consiglio

mc2For the longest time, I’ve been telling Jay that I would write a follow-up story and within the last few weeks I’ve sat down almost every day and tried to put it on paper.  At first, I wanted to tackle my story start to finish, then I switched to focusing on my current life and so on and so forth the struggle continued.  I quickly realized, through the helpful guidance of Mr. Fraga himself, that this is not all about me.  It’s about you, whomever this may reach, and helping you get through this.

The truth is, I’m still at a loss for words, and what I’m about to say might not seem too pretty.

Ironically enough, people from all over the US, hundreds of miles even from my small Connecticut hometown, have reached out to me via email, Facebook, and twitter questioning me, asking me for advice, and telling me that they see me as a somewhat poster child for “beating” PCS.

mc1

When I was 16 years old, 4 years after the concussion that changed my life, I had been exited from concussion/cognitive treatment for 2 years already and began chronic headache/migraine treatment.  After trying a plethora of pills, injections, hospitalizations, lumbar punctures, and naturopathic remedies, I was lucky enough to find Dr. Ducic, formerly of Georgetown University Medical, who was performing peripheral nerve surgery on patients who suffered from chronic headaches due to history of concussion.  From there, the rest is history.  I had peripheral nerve surgery on my occipital nerves in December of 2012 and the same surgery on my temporal nerves in July 2013.  Don’t get me wrong, my life completely changed after these surgeries.  I went from constant headaches to maybe one or two migraines per month.  There is absolutely no comparison, and I am personally grateful to Dr. Ducic for changing my life.

On the surface, these people are right: I have beaten PCS.  I live a completely normal life.  I’m a dean’s list student athlete at Johnson and Wales University in Rhode Island, am currently studying abroad in Dublin, and for the 2nd year in a row will be living away from home for the summer months to work full-time at a resort on Cape Cod, Massachusetts.  That feels pretty damn good to be able to do considering all the things I used to miss out on, and even avoid, because of my PCS in the past.

But, (there’s always a “but”, isn’t there?) my life isn’t all peaches and cream like I expected it to be after these surgeries.  Like these people contacting me about the surgeries and my story, I expected everything to go back to normal after surgery number one, and when that didn’t get me back to 100%, I expected to finally get there after surgery number two… but that fantasy never came.  I still struggle with migraines and every time I have a bad one, am sitting alone in the dark, lights off, music off, no phone- I’m reminded of the depressing reality that I need to accept that maybe I didn’t beat this.  Maybe I’ll never reach that 100% mark I pictured when it comes to not having headaches, and maybe I’ll be able to remember a list of groceries only as well as my 75 year old grandmother for the rest of my life.  But, hey? What’s wrong with that? I can’t fathom being stuck in the rut that was my life during the darkest depths of my PCS symptoms, but 3 years post-surgery, I can’t say I can imagine what life was like before, what I saw as 100%, either.

PCS will always be a part of me.  After all, it took up quite a few years of my youth and all in all made me the person I am today.  If that means sitting things out here and there because I need to be in a dark room once or twice a month I’m okay with that.  By now, I know how to treat it, what I need to do to feel better, and what to expect; and I’m okay with that.  I’m okay with all of it.

2 thoughts on “Life After (?) PCS

  1. cathy toomey

    I admire your perseverance and tenacity. I believe we are related. Is your grandmother Carol Consiglio? Carol ann is my cousin. Congratulations on all of your successes.
    Cathy Kirnan Toomey

    Reply

Leave a Reply