My Unexpected Adventure with a Brain Tumor–Part 13 (Dealing with Facial Paralysis)

I appreciate that my surgeons warned me that my facial paralysis wasn’t going to be quick to heal.  Nerves regrow slowly, and my facial nerve was put through a particularly rigorous test, given the extra long duration of my surgery.   My first glimpses in the mirror once I returned home were shocking.  Even though I didn’t have THAT much of a droop on the left side, the combination of the swelling of my cheek, some drooping of my eye, eyebrow and mouth, and the WIDE OPEN eye was not particularly fun to catch a glimpse of.  (I will say that the paralysis erases all wrinkles on one side though, which is sort of a pleasant side-effect.)

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My nightly “spa” routine.

The physical therapist and speech therapist gave me a variety of exercises to practice on a daily basis, which I did.  My acupuncturist encouraged me to also massage my face and use a facial cupping tool at home, so I did all of that regularly, but no dramatic change was taking place.  There were very subtle changes taking place, but it was hard to tell if they were happening due to the swelling around the ear still slowly subsiding in the first few weeks, thereby changing my face’s overall appearance, or if there really was improvement on the paralysis front.    My facial numbness was diminishing, so I figured that was a good sign, and I’d get an occasional “buzz buzz” sensation in my lips, which I also figured was good.  (Really, anything happening at all seemed good.)  When I’d see friends from one week to the next they’d comment that they noticed differences in symmetry, movement or facial tone, and my acupuncturist was always observing carefully and taking notes.  We started to take daily photos, but then fell off-track.  I would recommend to anyone else dealing with this to take a series of daily or weekly photos:  one with you not smiling, one with you trying to smile, one with puckered lips, one with trying to raise your eyebrows, one with trying to furrow your brow, and one trying to puff air into your cheeks.  I wish I had done that from the beginning; I’d have a really thorough record to look back on and see how much progress has happened.  It’s SO slow and subtle in my case that it’s hard to tell, but it does seem to be happening.  I guess it’s never too late to start.  I can look in the mirror now and at least recognize the person I see.

As I’ve mentioned in previous posts, with one-sided facial paralysis it’s necessary to drink through a straw, and for awhile you may have to use your fingers to move your lips to make a seal around the straw.  I didn’t really have a problem with solid food falling out of my mouth (maybe a bit in the first days at the hospital with the pureed food, but not once I returned home).  Also, read this post about caring for your eye while it’s unable to blink.

While my obnoxious eye has been “the squeaky wheel” getting all the attention with regards to my facial paralysis, it’s my smile that I miss the most.  I had a giant smile.  I was known for it and I smiled at everyone I passed, whether I knew them or not.  It’s a huge part of my identity, as I try to be a very positive and friendly person.  While I am trusting that it will eventually return, it’s challenging dealing with the fact that I feel like I can’t fully express myself in the way that I know best.  Even though I feel enthusiastic most of the time and greet people with my attempt at a big, loving smile, I feel like I have to say, “I AM smiling, I swear, but only half is showing!”  So…I just kind of worry that I’m coming across as rude or indifferent, when I’m actually expressing friendliness and joy.  That’s just not the vibe I want to give off.  (I’m extra thankful that my lucky hat says, “Good Vibes” on it.)  My friendly intentions still comes across in my tone of voice, but I am not going to pretend that I don’t miss my full smile.   If pictures are being taken I’ve pretty much just put on a straight face or a closed-mouth half-smile, even though I’m smiling much more on the inside.  Attempting my old smile REALLY exaggerates the paralysis.

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My past (and hopefully future) smile.

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Going wild with needles at acupuncture!  This was my “Hellraiser” look for Halloween.  😉

When your face doesn’t work properly it’s common, as you might imagine, to not want to be very social.  I read a lot about how people become depressed and isolated because of it, and the thought of becoming depressed was putting me in prevention overdrive.  So, even though I have been uncomfortable with my appearance, I have allowed myself to interact with everyone who came by to bring dinner, and I tried to just be my usual self for all of the people who drove me to appointments.  I shared  photos with friends on Facebook, and continued to share updates.  While I am not eager to go to a restaurant or to other places where I’d see people who don’t know my background explanation, I make myself be okay with seeing friends, and I try to live each day with a positive spirit.  I assume that my comfort level will keep evolving as the paralysis hangs on week after week.

My first “night out” was Halloween, which was about 3 weeks after my surgery.  We have an annual tradition to get together at our friends’ house for dinner before the kids go trick-or-treating.  Usually I’m too busy to pull together a costume, but this year I had all kinds of time and was pretty excited to do it, and I didn’t want to miss the tradition.  While the natural costume choice might have been a pirate, due to the obvious eye issues, I instead busted out a fancy ballgown, sparkly rhinestones and a masquerade mask after a very un-glamorous previous three weeks.  Getting spruced up and having a mellow gathering with friends for the night was just right to take my current recovery status up a notch.  Once we arrived, I kicked off my heels (I probably shouldn’t have worn them in the first place with my balance issues, but I held my husband’s arm for the few minutes I had them on).  I mostly sat on the couch, enjoyed some soup (keeping a napkin close by for the bits that tried to dribble out), and partook in my first glass of wine (I wisely packed a straw).   I was very pleased that I mustered the festive spirit, and people were happy to see me out and being festive after all that I had been through.  It was a happy milestone for us all.

Life is meant to be enjoyed, facial paralysis or not.  I don’t intend to miss out on any of the fun to be had…

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Halloween 2017:  3 weeks post-brain surgery…a masquerade indeed!   😉

 

 

 

 

 

 

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