This is a written timeline of my experience discovering I had Ramsay Hunt syndrome. From the start to the point of diagnosis was a week, but it felt like an eternity.
Wednesday, November 8, 2018
Excruciating migraine. One of the worst I ever experienced.
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 annoying, but it was still just an earache. What was I to do? It hurt. That night was Jonah's final Fall Festival for elementary school. We went. He had a ton of fun with his friends. It was chilly and windy out. I felt off.
Saturday, November 9, 2019
The pain had gotten significantly worse. After Jonah’s basketball game, I went to urgent care. After a three-second glance in my ears, up my nose, and down my throat, the Dr. deemed I have an upper respiratory infection (despite having no other symptoms) and put me on an outdated horse pill of an antibiotic. I only ended up taking one (thank goodness).
Sunday, November 10, 2019
I woke up Sunday ready for hockey, but something felt off with my face. I don’t know how to explain it except to say my face felt weird. A look in the mirror confirmed something wasn’t right.
My left eye wouldn’t close all the way.
The left corner of my smile wasn't spreading into a smile the way my right side was.
My left eyebrow wouldn’t rise as high as the other.
I 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. Other than feeling a little off, and my aching ear, I was fine; so I made the decision to go to hockey.
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 the early evening, the facial paralysis was worsening and I was worried enough to go back to urgent care. My best friend, Brooke, drove and sat with me through the first devastating partially wrong diagnosis.
Reflection: I should’ve taken the early symptoms 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 know now that the first 72 hours are the most critical when getting proper treatment and care.
At Urgent Care, I'm fairly certain I traumatized the doctor when she gave me the unfortunate diagnosis of Bell's palsy, as I had a full-on panic attack. Hindsight, Bell’s would have been a blessing, but I didn’t know that at the time.
In those first few moments, I was scared and felt helpless, and I couldn’t grasp what I was being told. I remember looking pleadingly at Brooke as the doctor tried to talk about the next steps. I needed a minute to process the information, but I deeply wanted to hear it would go away and that I would be ok. I wanted my face back.
Brooke asked the doctor to give me a few moments while I had a mini panic attack. The fear and worry were overwhelming and crisis mode kicked in. At some point, it would be time to game plan and figure out the next steps. But at that moment, Brooke knew I needed to grieve. She held 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 (within two days my eye wouldn't close at all - stuck in a perpetual state of openness), she gave me a shot in the rear of 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 on my own to figure out how to navigate this trauma because what I was dealing with was a very rare syndrome that most doctors will never see in their medical careers.
Monday, November 11 and Tuesday November 12, 2019
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. 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 syndrome instead---it's the news I didn't want.
Ramsay Hunt syndrome (RHS) happens when you have Shingles and it attacks your facial nerve. You only get Shingles if you have had 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 chickenpox. Got it? Ok, so the shingles had laid dormant in my body since I was a kid. Shingles usually awakens 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 five-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, was placed on a nerve pain medication, and was given five 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 named 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 is 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,