It has been:
§ 220,924,800 seconds...or,
§ 3,682,080 minutes...or,
§ 61,368 hours...or,
§ 2557 days
since that Sunday in 2012* when I woke up to discover the left side of my face seemingly sliding off my skull. Very. Scary. Day. Indeed.
Each year I try to mark the memory to remind myself that sometimes you just have to push through fear and pain and trust you will make it out. Like the last verse of that country song says:
“If you're going through Hell, keep on moving,
Face that fire, walk right through it!
You might get out before the devil even knows you're there..."
So, did I “get out” you might well ask? “For the most part,” is my standard answer. I still deal with synkinesis, a condition of ‘simultaneous movement’ that occurs after Bell’s Palsy...leading to involuntary, undesired, and simultaneous facial movements, including:
- Dimpling in my chin & facial twitching in my left cheek
- Narrowing of my left eye when I smile or sip through a straw
- Painful facial muscle spasms especially when I am tired or stressed
- Tightness of the neck bands and cheeks, causing facial pain and headaches.
Is there treatment or “a cure?” Well, there are 3 recommendations or ‘modalities:’
1. Neuromuscular retraining (physical therapy)
2. Botox injections (botulinum toxin)
3. Synkinesis surgery
I tried the first one about 5 years ago, but didn’t make it past the first session, which triggered such a painful spasm that it took me a few days to recover. You may recall my POV on pain and doctors: “you hurt me, and I won’t be back.” The second one has two words that terrify me: botox(in) and injection (needle!). And I typically run the other way whenever the word “surgery” is used. So, seven years in, and I still have synkinesis issues.
But...BUT...I am thrilled to report that those issues are not nearly as bad this year as they have been. Hooray! Maybe I am finally aging out of this lingering reminder of that episode of Bell’s Palsy 7 years ago...who knows? I can continue to live with the involuntary winking and the twitching if I must. I’m just glad that I am having far fewer instances of the painful facial spasms. That’s good news!
Since my anniversary BP post usually elicits at least one comment along the lines of “I didn’t know you had Bell’s Palsy! I/my daughter/my mother/my cousin/my co-worker was just diagnosed with it, too!” so I try make it a teachable moment. If you want to learn more about Bell's Palsy, here is a link to an excellent up-to-date (5/13/2019) fact sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Bells-Palsy-Fact-Sheet
Using my own blog posts about my experiences with BP, I aim to convey how frightened I was at my diagnosis, and also how thankful I was that I hadn’t had a stroke (which is exactly what it looks like in the beginning). I try to prepare newly-diagnosed patients with an honest appraisal of those first days and weeks, and I also try to be encouraging about recovery chances as well as open about any after-effects (like synkinesis). So, if you’ve stumbled on this post, please know there is hope...and recovery...after a bout with Bell’s.
Just keep on moving!
==========
*If you want to take the wayback machine to 6/24/2012, follow this link to revisit my own Bell's Palsy Day 1 here, if you need to refresh your memory. You can also use the label "Bell's Palsy" link to bring up all the related posts...and pictures, if you are ready for that.
