The day my face fell
Thursday, November 7, 2019
An earache started.  I'm not prone to earaches.  I hadn't been swimming.  I wasn't sick.  But nonetheless, I had an earache.  And it would continue to get worse by the hour.  

Friday, November 8, 2019
The earache was becoming very annoying, but it was still just an earache.  What was I to do?  It hurt.  It was Jonah's final Fall Festival in elementary school that night.  It was cool, almost chilly out.  We went.  He had a ton of fun with his friends.

Saturday, November 9, 2019
The pain had gotten significantly worse.  Jonah had a basketball game and right after I made them come with me to the urgent care.  I needed to know why my ear hurt so badly.  After a 30 second glance in my ears, up my nose, and down my throat, the Dr. deems I have an upper respiratory infection (but I have no other symptoms, not a cough, no congestion, just an earache) and put me on an outdated horse pill of an antibiotic.  I only ended up taking one (thank goodness).  

I went home and my neighbor told me about an old trick to help earaches.  They told me to get a garlic clove, peel it, and heat it up in the microwave.  Then place the garlic clove in my ear (carefully) and allow the clove to ease the ache and maybe stop it.  

It may have stopped it had it been a regular earache, but in my case, the only thing the garlic ended up doing was getting stuck in my ear.  Yep.  I managed to heat it up once and felt like it did ease the ache a bit, so I reheated the clove.  When I was trying to remove the clove the second time...I pushed it in just a hair too far and couldn't get it out.

I will pause here while you read that again and laugh...because it is funny.  Ok, done?  Good.  Back to the story.  This is the last thing about my story that is funny for some time.  

Sunday, November 10, 2019
I woke Sunday morning with the same earache, but worse.  But, it was Sunday, and hockey time so I did my normal morning routine when something about my face just felt off.  I didn't know what it was.  My face just felt weird.  I walked to the bathroom mirror and looked closely at my face.  

Hmmm.  My left eye doesn't seem to want to close all the way.  
Hmmm.  The left corner of my smile wasn't spreading into a smile the way my right side was.  
Hmmm.  My left eyebrow won't rise as high as the other.  

What is happening?  No time to figure it out, off to hockey we went.  

I was pretty quiet at hockey.  My ear hurt and I was very conscious, not for the last time, that my face wasn't working right.  By this time, I had talked to my dad, we ruled out a stroke, and I decided that maybe my ear canal was inflamed due to the ear infection and in a couple of days the inflammation would go away and my face would return.  I was right and wrong.

By that afternoon, what I now know as facial paralysis, was really setting in...and I was worried enough to go back to the urgent care.  However, I was NOT going back to the first place.  I called my best friend, Brooke, and she drove me, I think (I really can't remember some of the minute details, but I assume she drove because at this point I had a sneaking suspicion that I had Bells Palsy - I have another Doctor friend, Rozana, who I sent a video too, and she felt like that may be what I was dealing with and encouraged me to go to the Dr)... so, I'm sure Brooke offered to drive.  

That doesn't matter, what matters is I should have gone to the ER, not Urgent Care.  I should have taken all this more seriously and not waited nearly 12 hours to go to a doctor because every hour that ticked by was an hour of damage happening to the nerve of my face, and I didn't know it.  Every hour was precious.  I should have probably done a zillion other things that I did not do.  But I did go to an Urgent Care where I'm pretty sure I traumatized the poor lady Doctor when she gave me the unfortunate diagnosis of Bells Palsy (looking back, Bells would have been a blessing, but IDK that at the time).  

I definitely had my first major panic attack sitting on the table at that Urgent Care.  I couldn't speak.  I couldn't think.  I was so scared and felt so helpless...and the doctor just looked at me, tried to continue talking to me about the next steps, and I remember looking pleadingly at Brooke.  I wanted her to tell me it was a joke.  I wanted her to tell me that it was already going away and that I would be ok.  I wanted her to tell the doctor to stop talking and give me a minute to process the information she had just given me. I wanted her, anyone, to stop what was happening and make my face come back...but she couldn't do any of that.

I finally got enough wits about me to ask the Doctor to give me a few moments.  I needed to wail.  I needed a moment to get the fear and worry out of my brain so I could calm down long enough to take stock of the situation.  I needed to be allowed to grieve for a few moments before it was time to game plan and figure out the next steps.  Brooke let me cry.  She help my hand and let me cry.  

When I was composed enough to talk with the Doctor again she gave me some basic instructions on eye care (cause remember my eye wouldn't close all the way and within 2 days it wouldn't close at all - stuck in a perpetual state of open), she gave me a shot in the rear of something (I think prednisone), some prednisone to-go, and sent me on my way.  That was it.  There were no other instructions.  There was no game plan or map to follow.  I was just on my own to figure out this new-to-me trauma, and I really was on my own because it ends up what I was dealing with was a very rare syndrome that most doctors never see in their medical careers.  Hint...this means they don't know it when they see it, and they don't know how to treat it.  Time lost here is devasting to an RHS diagnosis.  

In the coming days, the earache got worse.  It started firing like streaks of hot lead coursing down my jawline towards my mouth, nose, and eyes.  It was searing its way to the back of my head and neck, causing me to jerk with a full head twitch.  I didn't know how to take care of my eye (thank you to the FB page I found pretty quickly that gave me eye care advice).  And by Tuesday, my left ear had started to swell turning burning red and hot, and vaguely resembled a cauliflower sitting on the side of my head.  Of course, I checked in with Dr. Google and discovered that what I was dealing with was likely NOT Bell's Palsy, but Ramsay Hunt Syndrom instead---it's the news I didn't want.

Ramsay Hunt Syndrome (RHS) happens when you have shingles that attacks your facial nerve.  You can only get shingles if you have had the chickenpox.  So, I wasn't contagious to anyone who had had chickenpox or the vaccine, but, I was contagious to anyone who hadn't, and they wouldn't get shingles, they would get the chickenpox.  Got it? Ok, so the shingles had laid dormant in my body since I was a kid.  Shingles usually wakes up and attacks the nervous system when one's body is depleted, stressed, and in general, not healthy.  I was all of the above.  I'll save that story for another day, but, in some ways, I'm surprised my hitchhiker friend, the shingles, hadn't shown up earlier.  

I went into another, smaller scale, panic attack.  I was alone (my boys were here, but I'm divorced and my family lives 2.5 hrs away), I wasn't sleeping, I was scared, and things were getting worse.. Not only had the left side of my face fallen, but I also had no idea how to fix it.  I was spiraling.  How was I going to get my face back?  

My dad was my savior at this point.  He told me to call my step-sister-in-law, Emily.  She works at Shands in Gainesville alongside the best of the best Neurologists and ENTs in the state.  The two of them worked together to help me get in to see both a Neurologist and an ENT on Thursday (day 5 of facial palsy).  I was in so much pain I could not drive.  The appointment was at 7 am in Gainesville (this was all happening at 9 pm on Wednesday)...I live in Tampa.  My dad got up at 2 am, drove down, picked me up, and drove me back to Gainesville.  This was about a 5-hour trip and we got to the Doctor right on time.  This was the start of a very busy day.  

A very long story short, by the end of the day I had seen two doctors who had never seen Ramsay Hunt before, an MRI to rule out a tumor, placed on a nerve pain medication, given 5 more days of steroids, denied anti-virals (3x after it was all said and done), learned I had hearing loss, got a very quick demonstration on how to tape my eye shut at night (I was never successful), and told that I had a "textbook" case of Ramsay Hunt Syndrome, asked if they could take a picture to show student doctors, and told my ear may show up in a medical book someday.  RHS is so rare that less than 5% of doctors will ever encounter it in their lifetime career.  My ENT was experienced and the head ENT of Shands but he had NEVER seen it himself.  So, I do kid around and say my left ear may be famous someday in some medical book about facial palsy.

To wrap up, RHS is no fun. There are too many to name symptoms that go along with facial palsy. I didn't see any movement in my face until 3 months after onset.  Right about this time Covid happened and the medical world shut down.  I couldn't find a physical therapist in my area that specialized in facial palsy so I went 8 months before I found a PT who would see me online.  

It was at that time, that I spoke with a very experienced ENT who has studied RHS and other zoster viruses, and he was adamant I get on antivirals and take them for a year.  He said I would probably have had a better recovery if I had been given them in the early days (even at day 5 or 7 would have been better than nothing).  So in Aug 2020, I began the only real treatment there is for RHS...antivirals and physical therapy.  

I began seeing a PT online in August 2020.  Jodi Barth, co-author of the recently published book written about facial palsy, Fix My Face, is with the Center for Facial Recovery and a highly experienced and very skilled PT who specializes in facial palsy cases.  She gave me some hope and 15 months later I've gone from 45% recovered to 75% recovered.  With the help of botox every 3 months, my face looks more symmetrical, aches less, is less tight, and the synkinesis is quieter.  

Wednesday, November 10, 2021
As I type this, it marks two years since my face fell.  That two years has been some of the most difficult and trying times of my life, but on the other hand, it has also been a time for growth and freedom.  I'll have to write about that experience another time, but, while I wish every day I had my smile back, I am grateful for being here, being alive, having an illness that isn't life-threatening, and while my smile isn't as big and beautiful as before,  I have gained an appreciation for what other people who are fighting for their lives might be going through.

Final take away, smile.  Smile for the picture even if you hate pictures.  Smile at a stranger and make their day brighter.  Smile just because, because the act of smiling releases endorphins and lifts your mood. Just smile.   

Amy S


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