Living with Synkinesis from Bell’s Palsy

Most people tell me they can’t notice anything wrong with my face. I don’t think they are lying, but think maybe they’re not looking close enough to notice. Or who knows, perhaps they are lying to spare my feelings. For me, it is super noticeable, but then again, it’s my face.

I can feel all the weird uncontrollable motions it makes. I know that I’m trying to keep my eyes open when I smile, chew, or whistle, and it closes by itself. I know I’m trying to fully smile, even though my right side won’t raise up all the way. I feel the weird charlie horse-like cramps and the tightness in my face and neck muscles.
My face wasn’t always like this. It used to be more symmetrical until bell’s palsy changed it.

Bell’s palsy is a temporary paralysis of the 7th cranial nerve. I’ve read many different theories on what causes it: stress, viral infection, inflammation, Lyme Disease, but the exact cause is unknown. It’s rare to get in the first place, and most of the time it heals within a few weeks to a few months without any residual effects. It is even more uncommon to get it more than once.
I am somehow one of the “lucky” ones that have had bell’s palsy more than once. The first time I had, it was in middle school, which is probably the worst possible time in life to have it. Middle schoolers, in general, are not the most understanding and compassionate bunch. (I had classmates that called me Christopher Reeve for the rest of that school year.)
Luckily, I had great friends and I guess thick skin, because I made it through without being totally traumatized. After that episode of Bell’s palsy, I healed entirely within several weeks. There were no residuals. The second time I had it I wasn’t as lucky.
My second episode of bell’s palsy was in 2014 when I was pregnant with Chaosman. It happened in March, and he was born in May, and between that time, I didn’t have much healing occur. It wasn’t until I was several weeks postpartum that my face was starting to regain movement. Since then, I have recovered a lot of movement, but still not back to 100%. Delayed healing is probably what caused my synkinesis.
Synkinesis is when your face makes involuntary movements when you are moving other parts of the face. For me, synkinesis mostly affects my eye. My eye closes slightly when I talk or smile and closes a lot when I chew, whistle, or pucker. This happens no matter what I do; I can’t control it. My eye also constantly waters when I chew, and oddly enough, it will produce tears if I’m crying, but if I am cutting an onion, only my good eye will tear. Basically, during the healing of the facial nerve, connections were made that shouldn’t have, and this, in turn, makes movements happen in parts of the face you aren’t trying to move.

There are a few ways I have heard of people having synkinesis and bell’s palsy residuals treated.

The first way is surgery. I personally would not choose to have surgery. I don’t think it impacts my life that much that I would have elective surgery.

The second way is botox injections. The botox injections relax the muscles allowing the face to appear to be moving better and more symmetrical, but this only lasts for a few months, so you would need to continue to get injections. This is also something I personally would not choose.

The third way is facial retraining, a therapy that helps you relearn how to move your facial muscles. I think this is the best choice for me and what I am finally starting after all these years.

I’m not exactly sure why I put off seeking help for so long. I think it was a combination of factors. I think part of it was the time commitment for the appointments and stretches. There was part of me that thought I should just deal with it because there are so many people worse off than me, and in the grand scheme of things this was a minor problem to have. However, I think the biggest thing holding me back was that I felt it was vain to want my face to appear “normal” again.

Over time, I realized that it’s not vain for me to want my face to function properly. Our faces help us communicate, and that is important.

So I finally decided to do it, and last week was my first appointment with a facial retraining specialist. Even though I’ve had the tight muscles and synkinesis for over six years, I could feel a difference even after the first day. It went so well, and I am looking forward to using all the techniques she showed me to help get my face closer to “normal.” I know it will take time, and will most likely never be 100%, but I will be happy with any improvement.