Acoustic Neuroma – How I Face My Face

I’m hard on myself, always pushing for progress. Critical of myself and always falling short of my own expectations. Not acknowledging that perhaps some things are beyond my control. One simple example being facial paralysis. I consistently fuss over of how much I have not healed – or ever will – rather than how far I’ve come.

Facial paralysis is hard. The first few months were the worst. It’s hard to watch nothing happen. It’s painful to wait for a healing rate of 1 mm per day. I was told that it would be at least seven to eight months before I could expect any healing and much longer before I’d know my “final” healing rate. At the beginning of that seven months it could have been twenty years.

However, I was given hope. I know that many people have to swallow the tough news that their facial nerve was completely severed and there will be no healing. There are possible surgical options in those cases, but that is a different path than I traveled.

Since the initial trauma during brain surgery, I’ve had a lot of improvement. People tell me they can’t tell, which is an emotional dilemma of its own. I fully accept their perception and appreciate their encouragement but am screaming internally that it is NOT ME! I wonder if they are truly looking at my face because it still looks incredibly abnormal to me. It’s such a contrast to process the difference between what I see in the mirror versus what I’m told by others. I recognize that they are seeing a face in motion that frequently smiles where I am studying a motionless direct glare of disappointment. I do appreciate that each person in my life does not stare at my face in a medical analysis mode.

Regardless of my frustration, I see improvement if I consistently focus on small changes. Improvement that some people would dance in the streets with delight about – and others see and are reminded of their more advanced outcome.

I have learned more about facial paralysis than I even thought possible. I am not a medical professional but as a person living it, I’d like to share a bit of what I’ve learned. I am just a girl, standing in front of a mirror, wishing I had my old smile back. (yes, that was a corny reword from the movie Notting Hill but I think you’ll get it and maybe smile a bit.)

First, while you are waiting for the facial nerve to heal from the brain at, prior to healing showing, here are some things that may be helpful:

– Regular use of a heating pad on the effected side of your face on a daily basis helps blood flowing for optimal healing.
– Gently brushing your cheeks with your fingers reminds your brain that your face is still there.

As healing begins what I didn’t know is that my muscles seized as the nerve healed. So, I had the characteristic look of a raised lip – my cheek muscles were pulling up as they seized. Through facial therapy, I learned that there was a lot of stretching that would help.

However, my fingers got tired and I couldn’t stretch things well inside my mouth. So, I experimented a bit and discovered the value of using a baby teether. This tool helped me significantly. (If traveling without, a spoon will do if you are gentle with yourself.)

In hindsight, I should have been stretching immediately after surgery. I know that many before and after me have found their own methods, but here’s my “wish” list:

1 – trail fingers on cheek
2 – pull cheeks together with mouth open
3 – push bottom of nose up. (like a pig – very attractive)
4 – Press between eye and nose
5 – massage cheek vertically and horizontally.
6 – pinch along jawline

I was told somewhere that a stretch doesn’t count if not held for 30 seconds and have strived to honor that minimum. I believe it does help your body parts relax and release into the stretch.
If a spot on my face hurts I hold that position until it stops hurting. I don’t know how to describe this so let me know if you’ve experienced it. After holding a painful spot (spasm) there is almost an instant – very short – where it hurts amore than then releases. It’s almost like the muscle is making one last attempt to hang on before giving up.

If you’ve had a Charlie horse – or cramp – in your leg, you know it hurts. Did you know that a facial muscle spasm is the same? Your leg muscles are connected to bone, so the pain is immediate and intense. You immediately stand to release it and it typically releases and feels better.

Facial muscles are not attached to bone, so we don’t have the same intense pain. The down side is that we then aren’t aware of the cramping and think its paralysis. Since you can’t stand to release,  you must turn to other methods.

I continue to work with my face. To me, it still looks strange. Partly because I’m not 21 anymore (grin). But if I follow my routine, it does make a difference in looks and comfort.

I know I’m not alone in this journey…

Pictures that may help are below.  PLEASE NOTE that if your face is really tight you will say this is impossible. However, with continued stretching, you will be able to.

 

 

 

 

 

This is “the lip” before stretching

This is “the lip” after stretching. I am able to close my lips.

2 thoughts on “Acoustic Neuroma – How I Face My Face

  1. BB

    Thanks, Sally. I found a few exercises on the Bells Palsy website as well and am excited to have another resource. I experience facial tightness that is aggravated by talking and eating. My physician prescribed Trokendi XR, but I needed the stretching exercises, too. My 3.5cm AN was removed five years ago. I appreciate your posts.

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