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Smiling and Facial paralysis

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Asymmetrical flower

Asymmetrical flower

One of the things that people with full or partial facial paralysis will tell you is how much they miss their smile.  I had the same reaction, and still do even though much of my face has movement again.  It just isn’t the same – and that’s by factoring in parts that didn’t regain movement and Synkinesis (explained below). By going to facial therapy every few months for the past four years, I have learned some interesting things that are helpful. First and foremost – A smile is not just a smile.

Our Eyes – We smile with our eyes as much, or even more than our mouths. Technically, the twinkle in the eyes of someone who is genuinely happy is caused by tear layer being compressed with slightly squinted eyes, which causes more reflection in the thicker layer of fluid.

Our Cheeks – We smile with our cheeks.  If you hold a paper in front of your mouth and smile at someone, they will know without seeing your lips if you are smiling or frowning.

Symmetry – Beauty according to the modeling world and scientists of natural selection perceive a symmetrical face to be ideal.  However if you start to study faces, few are symmetrical.  We love people in our lives regardless of their natural symmetry.  We love actors in movies sometimes because of asymmetry — Harrison Ford being one example. Brian Williams is a news anchor with asymmetry. I, personally, watch NBC nightly news because of his wit mixed in with the drama of the day, not because of his symmetry or asymmetry.

So we’re asymmetrical.  Okay. Acoustic Neuroma survivors even more so than we were prior to brain surgery.  Some parts don’t move and some move wrong.  That’s because of a couple things that I will explain in such simple English that doctors and therapists will groan (and be reminded that I’m not a doctor):

Nerve Healing – Nerves heal at the rate of about an inch a month.  BUT WAIT, there’s more! What I didn’t get is that the nerve doesn’t just heal at the little section that was damaged, but from that point out to the end.  Take me for example – my facial nerve was damaged at the time of surgery.  Obviously that damage was inside my skull.  The healing required for my mouth to start smiling again was about 6-7 inches.  So, the corner of my mouth turned up at seven months, which was about right. Some nerve fibers way out at the end of several branches will just never get movement back.  Because of the distance, the forehead almost never comes back, I have been told.  (Some facial nerves are severed and never come back, for which there are surgeries available)

Synkinesis – I was told by one doctor that once the nerve heals, it heals.  My face would just start moving again.  What he didn’t mention was Synkinesis.  When the nerve is damaged, that means that some fibers within the nerve were broken.  If you can image a rope being frayed, and then (use your imagination) it becoming whole again, it is easy to see that not all fibers would heal to their previous partner.  That is Synkinesis.  The improper movement of the face due to improper healing.  For instance, when I try to raise my right eyebrow, it just sits there.  However, when I do certain other movements with my face, it lifts like a little soldier.  Gee, where were you when I asked you to raise?  When I drink through a straw or pucker, my eye closes or squints.  Synkinesis is determined by the amount of damage compounded with the length of time a nerve is paralyzed.

Neuromuscular facial retraining – Once the face starts moving again, it becomes locked up because our brains were trying so hard for so long to move those muscles that as soon as they healed, they froze.  So we often think that movement hasn’t returned when it has.  Facial massage, focusing on painful knots that we feel, will loosen those muscles and make us more comfortable.  Retraining, which I haven’t mastered, is possible by making tiny movements and stopping when it stops matching the movement on the normal side.  With time, our brains can remember how to better move. (this should be done with a trained therapist)

There is no magic bullet, and no point when many of our faces will ever be normal again.  However, if we understand the mechanics, we’ll understand what our bodies are doing.  Knowledge is power.

My next post will be about Pictures and Facial Paralysis. . .

Acoustic Neuroma Lessons – Eye Health #3

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IMG_6519 cThe Recovery Phase:

First, I have to add something that I didn’t mention in Part 1 or 2. The REASON why we care so much about a dry eye. It can cause serious damage to the cornea and vision loss. Also, a dry or damaged cornea is very painful, which I can say just from having it dry. It is important to have a dry eye examined regularly by an ophthalmologist for cornea damage.

For a few months following brain surgery, I was unable to wear a contact lens in my dry eye. I lubricated it regularly with artificial tears or gel. I learned to primarily use my left eye because my vision is poor and my left eye was corrected with a lens, leaving an imbalance. I was fortunate because, although I couldn’t see progress, my muscles were slowly improving. At about 4-5 months I was able to start wearing a daily disposable lens in my eye, which helped to protect and keep the eye moist. With regular use of eye drops.

One side effect of brain surgery surgery can be double vision. I didn’t realize until after I could wear a lens in my eye that I still couldn’t see things quite right. What I learned is that “double” isn’t like seeing the Doublemint twins (if you remember those commercials). Double can be two images side by side; above each other; or skewed, which is what I have. It’s a combination where one image is a bit to the right and up. Almost in focus but “skewed.” For me, that hasn’t changed. The eyes are in line visually, but see a bit differently.

I also learned how important a proper tear layer is for vision. My dry eye can’t be fully corrected because it is usually either too dry or too wet with drops. Just right is pretty rare, which perfect vision requires.

Some recipients of Acoustic Neuromas lose the feeling in their face in addition to the loss of movement. That is quite dangerous, as you can’t feel when your eye is dry. I never lost feeling, only movement.

My face slowly began to regain movement at 7 months. At about 2-1/2 years, I was able to have the gold weight removed because my eyelid was able to close adequately by itself. I was very excited because I was able to have it removed a couple months before Kendra’s wedding. As you can imagine, following facial paralysis, pictures are a huge deal. Getting rid of the weight in my eyelid was a major milestone in my recovery.

Once again, it was an outpatient procedure. Awake but numbed, I talked to the doctor about minor things while he cut into my eyelid to remove the scar-tissue surrounded weight. After what seemed like hours, but was less than one, he was done. Of course, I had a black eye again to recover from so I laid low for a few days.

When my eye weight was removed, the doctor put a punctual plug into my tear duct. You know, that round little hole that you can see at the inside edge of your lower eyelid?  That’s actually a drain, so the plug kept tears from escaping my eye, which kept what little tearing I had in my eye longer. It stayed in for a couple months and then fell out one day. I didn’t have another one put in as I had adjusted to the muscles having to do all the work without the assistance of a weight.

I still have to put eye drops in – sometimes a lot and sometimes not much. I haven’t been able to predict how my eye will behave. Some days I reach a point where artificial tears no longer help and only closing helps. A nap allows my eye time to rest and build up its tear layer. When I awake, it feels better – at least for a while.

There are times when it suddenly waters a lot – usually related to eating or chewing. It isn’t repeatable though or I would be chewing all the time!

The good news is that when crying, I only needed a tissue for one eye and half a runny nose!

Please add comments below about your experience with dry eye.

Acoustic Neuroma Lessons – Eye Health #2

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IMG_6518 c

Initial Treatment

In the hospital immediately following surgery, nurses taped a plastic bubble over my eye, providing a greenhouse effect.  Moisture built up in the bubble and kept my eye from drying out.  They also put lubricant in my eye that was a messy gel that liquefied and coated my eye.

The surgeon suggested putting a gold weight in, which I learned was actually titanium.  Having it sewn into my eyelid was good news because I had learned that a small weight would help the lid close more effectively.  The bad news is that you don’t get a gold weight if your face movement will return quickly.  It was a reminder of the long road ahead.

gold weight_6568 c

Different samples were taped to my eyelid to get the correct weight – just enough to close my eye but not too heavy or I wouldn’t be able to open it. After going back and forth, a decision was made. The appropriate weight was heavier than ideal but necessary due to the extent of my paralysis. The weight had links in it like a watch so it would curve with my eyelid. (the picture shows the size, a little over a half-inch.)

Having the platinum weight sewn into my eyelid was a short procedure done while awake with local anesthetic.  Well, short according to the doctors.  It felt like the longest 40 minutes of my life.  It was very strange to have someone cut into my eyelid and insert a foreign object.  Then they stitched me up and sent me back to my room. My procedure was done while I was still in the hospital, but frequently they are added several weeks or months later.

I continued to use the bubble only at night and then with time I was able to only use nighttime gel.  Some doctors recommend scotch taping the eye shut or the use of an eye patch.  My doctor didn’t want me to do those things as he felt that I could scratch my cornea.  As with anything in medicine there are different opinions on treatment and its whatever a doctor and patient agree to. Mine preferred bubbles.

I’m not very knowledgeable about other options but I’ll list them for info.  Googling any of them will provide more detail.

– A procedure called a Tarsorrhaphy partially sews the eyelids partially closed until movement returns.

– Eyelid Palpebral Spring surgery is another option, which assists with blinking.

– Lateral Canthoplasty is a procedure done by shortening the lower eyelid to keep the lower eyelid from falling from the eye.

Anyway, back to my journey. I now had a black eye to add to my existing appearance issues – a row of 29 staples behind my ear from brain surgery and a motionless right face. I’ll never forget the self-consciousness as I was wheeled out of the hospital and crawled into my waiting car. I couldn’t believe what I was living but the pain reminded me that I was indeed alive.

In Part Three I’ll talk about recovery and how things have changed — or not — over time.

Note: Pictured above is a NitEye Dry Eye Comforter Eye Bandage. They aren’t on google but can be found here: NitEye

Acoustic Neuroma Lessons – Eye Health

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DSCN4229 eye

Part One – There’s a lot to say here, so I’ll continue in the next post.

When I was diagnosed with an Acoustic Neuroma, one of the things that I read about was the effect on eye health.  That just didn’t make sense to me. I read about dry eye, gold weights, and patches. It all sounded rather horrifying and I quickly discounted it as anything that I would have to deal with.

After surgery, life taught me otherwise. I learned a lot about eye health — I no longer had the luxury of ignoring it. When I woke from brain surgery, the nurse put drops in my right eye every few minutes. In my confusion, I didn’t understand why she didn’t put them in both eyes. It even occurred to me that I didn’t understand why she was doing it at all. However, I noticed that after keeping my eye open for a couple minutes it would get dry. Then it started to sink in — my face was half paralyzed. There were many issues to deal with, but for now I’ll just talk about my eye.

My facial nerve was stretched across the tumor like a ribbon.  After surgeons spent hours irritating my facial nerve by separating it from the tumor, it stopped working. They were confident that at least some movement would return to my face, but they didn’t know when or how much. It would be at least 6-7 months based on a nerve regeneration rate of an inch a month.

Since facial muscles also involve the muscle that close the eye, blinking became something that I had to think about. The muscles responsible for opening my eye were not affected, so opening my eye was not a problem – just closing it. My normal, left eye was finished with a “normal” blink while my effected eye had only made it halfway. I had to learn to think about making a complete blink. I had to close, relax, and feel my eye close fully. On top of that, the eye had lost its ability to tear, effecting the eye as well as sinus on my right side.

To be continued. . .