Bell's Palsy Update — Day 1,461

(Yikes! I'm 3 weeks late with this post. I thought it had been published on 6/24/16, but the miracle of technology was not working in my favor. I discovered today that it was still sitting in the "Draft" queue. Ah well...better late than...well, you know.)

Four years ago today, I experienced what was possibly the worst day of my life.* In case you have just joined our adventures, you probably could do with a recap: after a few frightening hours on an otherwise beautiful Sunday while visiting Missy M in Louisville, I was diagnosed with a neurological condition known as Bell's Palsy, which in my case affected the left side of my face. If you'd like all the details...you can revisit my original post on the subject and read forward, starting here: http://adsit2.blogspot.com/2012/06/there-good-news-and-bad-news.html. Go ahead...I'll wait.

Fast forward to 2014. At the two-year anniversary, I wrote about my realization of how I had moved from "recovering from Bell's Palsy" to "living with the residual effects of Bell's Palsy" in this post, written 2 years ago today. I specifically mentioned my "new normal" in this one:  http://adsit2.blogspot.com/2014/06/bell-palsy-update-day-730.html. Yeah.

Well, here it is, June 24, 2016. And, how well am I enjoying Normal, now that it's "old hat?" Truthfully, I am accepting it more than I did then. Because of the lingering effects of synkinesis (explained very well here:  http://www.facialparalysisinstitute.com/8/synkinesis.html), I still have those unpredictable and painful muscle spasms in my left jaw, but I have given up taking the daily doses of gabapentin (generic name for Neurontin) that I took for more than a year. Because of that action, I can now report that I'm enjoying Life much more. (Gabapentin has a wicked side effect of making one lethargic, and in my case, to the max, even though I was on the bare minimum dosage! I felt like I was always walking around in a fog, and I could not concentrate on details without an extraordinary amount of effort. I wasn't sleeping well, even though I felt sleepy a great deal of the time. Plus, I realized my fuse was way too short, even when dealing with mundane, day-to-day things. Good riddance to gaba, I say!)

My speech patterns remain the same as this time last year, with stress or excitement causing me to stutter over certain sounds (b, p, f, m, and s) and struggle with certain words (specifically the word "specifically"...;-). I also still involuntarily wink my left eye when eating, drinking, or sipping through a straw, or when I try to smile really big. Nothing has changed there. 

In the past, I have posted a picture to show "progress" in my Bell's Palsy journey. I neglected to snap one on the anniversary date, but here's one taken when I picked up my new glasses two weeks earlier on 6/10/16. While there is still evidence of the droopy left eye when I smile, it doesn't seem too prominent...or, I've become immune to it at this point.



This might prompt something like: "oh don't worry about it. No one can tell." I still want to respond to that comment with "but I can tell." Then I remind myself of my blessings and remember how very fortunate I am because some people with Bell's suffer much more lasting nerve damage for many more years, and/or much greater visual evidence of synkinesis.

So, pretty much same song, 4th verse. At least on the Bell's Palsy front.

You may recall, however, that I wrote in 2015 I was going to "try something different." It came about when I discovered that Dr. Ronald Steenerson's Atlanta Ear Clinic...where I received fabulous treatment years ago when dealing with the acute phase of benign positional paroxysmal vertigo (BPPV), also offers neuromuscular facial paralysis retraining for Bell's and synkinesis patients. Read more here: http://www.atlantaearclinic.com/facial.htm. Yes, I made the call and had my first appointment in August.

Alas, all did not go as hoped with that route. While I was treated with the utmost care and concern, and my situation was understood and appreciated from my first moment in the office (which was something I haven't experienced when seeing my GP or neurologist...God love 'em, they deal with stroke victims and approach Bell's Palsy...especially in the recovery phase...as "no big deal." Sorry. For those of us living with it, it most certainly IS a big deal.) Anyway, let's just say I did not respond well to the treatment, which involved placing electrodes on the affected muscles in my face and neck, in order to "retrain" them to do what they were originally designed to do. While I can say that the spasms in my left cheek HAVE diminished greatly (yay!!), I am sad to report that the spasms in my left jaw/neck have been made much, much worse. And so, I made the decision not to continue the treatments. Too painful. Sigh. Double sigh. Triple sigh, even. 

(A humorous aside to share: I am famous for telling doctors "if you hurt me, I won't come back." I once said to the oral surgeon who was going to remove my wisdom teeth and had offered me two options: do them one at a time in four office visits or have them all removed at once under anesthesia at the hospital: "Doc, you'd better schedule me into the hospital, because if you hurt me during the first office visit, I won't come back to have the other 3 teeth removed!" The neuromuscular retraining hurt me; therefore I won't be going back.)

Moving on...

I find that while these jaw and neck spasms are indeed more painful, they are much less frequent than the previous cheek spasms were. I have noticed that these spasms seem to come when I'm overtired; when I've been using my jaw and neck muscles a lot (like when we were at Mr. T's Retirement Party at the DASH baseball game in April...lots of chatting, lots of laughing, lots of smiling...followed by jaw-locking spasms on the way home); or when I have been squinting into the sun (as in working in the garden on a bright, sunny day). So you probably won't see me outside without my extra-dark sunglasses and my visor. And, if you do, please remind me to put both on!

Wonder what I'll report at the 5-year "anniversary?" We shall see...we shall see...

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* So, how can I think that the day I was diagnosed with Bell's Palsy was worse than the days that my parents died? Probably because both of my parents had suffered prior to their deaths (Daddy from aplastic anemia, and then being in a vegetative state for seven weeks; Momma from lung cancer for several months), the day that each died was a blessed release from their pain. The day I was diagnosed with BP was the day the world shifted for me...without my permission. 

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