My Facial Paralysis Story
I had been told my entire life I had a pretty smile. In August 2005, that changed. Bell's Palsy (or so I was told at that time) took up residency in my face and decided not to leave. Scared. Confused. Angry. Unsure of what's next. It all described my feelings for several months. But one thing I never let it do was make me feel sorry for myself or try to hide from it. After many therapies, neurologists visits, steroids and massages over the next year, I was informed that "it is what it is and you will never be able to smile again". That was in 2006. I didn't like hearing that and even though I knew that what they said might be true, I didn't want to believe it. I am not a competitive person. But if I am told you can't do something, my inner "see if I won't" triggers and I somehow find a way to prove them wrong. Been doing that my whole life. Not as a way to prove a point. But more of a I refuse to accept less than the best. And even though unbeknownst to me still at that time, that would begin my passion, desire and journey to help others with facial paralysis.
So in 2011, I underwent a pretty extensive and invasive facial surgery.
I qualified as a candidate for facial reanimation surgery
(also known as the smile surgery) since I had extensive facial
paralysis. This is a muscle transplant from my thigh to my face.
Yep, I'm a real life walking talking Frankenstein with all scars
and body parts in other places. I have the scars to prove it,
although you can't see them really unless I just point them out.
But hey, I'm OK with my scars! And no....I don't really view
myself as Frankenstein. That surgery helped me to be able
to smile again and regain function I hadn't had in years.
It's not perfect. It's still crooked. It's not a full grin smile
where I can show all of my teeth. But it's mine!
(That's me rocking the sexy cotton gown, mesh hairnet and war paint
in preop about to go into surgery.)
I never really accepted that I had Bell's Palsy. Yes, I had all the symptoms of it and my face was doing everything that mimicked that diagnosis BUT the excruciating pain and the almost immediate onset of facial paralysis I had didn't really go with Bell's. I was convinced I had Ramsay Hunt Syndrome but because they couldn't see a rash to accompany this, they deemed it Bell's. Just this year (2019), after reviewing years of records and symptoms and the fact that I have the Varicella Zoster Virus (I've had chicken pox and the shingles) and their belief is the shingles virus got into my nervous system to my face instead of breaking out a rash on my face and neck like the first time. I was given a new diagnosis of Ramsey Hunt Syndrome. While I was a little perturbed no one listened to me previously, I breathed a sigh of relief that someone finally was like "hey something isn't adding up here."
I never want anyone to feel like they are alone or feel like they look like a monster just because you have facial paralysis. I have lots of friends (new/old) that have facial paralysis of some sort. Whether from Bell's Palsy, a stroke, problems from brain tumors, or whatever other medical problem or accident happened to them. My goal is to be here as an advocate for y'all! You don't ever have to feel like you don't have someone to talk to. I love being an advocate for you guys. I can help direct you in hopefully the right direction of some amazing doctors and/or surgeons, websites for reference, massages/exercises etc. to help your face, or if you just need someone to vent to.