Tag Archives: facial paralysis

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.

What’s In a Smile?

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Recently, I was dining in a buffet setting. People were coming and going between all the food options. The dessert table was particularly busy. As I approached, I saw what appeared to be a bit of a commotion. Not a fight or a brawl. What I saw was joy. I experienced a man living in the moment.

An employee serving cheesecake had facial palsy that immobilized one side of his face. Something that I would not have noticed or understood in the past. However, knowing what I know about living without the full use of facial muscle, I tuned into the picture before me.

I was captivated because he showed no sign of being self-conscious. He was not feeling sorry for himself. His infectious smile took over his face. His eyes, laugh, and broad “half” smile were pulling customers in.

On each side of him, servers dished up other desserts. The servers were pleasant (and the desserts too), but I don’t remember them as individuals. They weren’t pulling people in with a contagious enthusiasm for one particular dessert. Their smiles paled in comparison to his.

People responded to this one man. They chose his dessert over others – not for a lack of choices but due to his inviting nature. He was delighted to interact with each person and proudly dished out what I would define as oversized portions. It wasn’t about whatever he had gone through to become facially paralyzed. It was about the moment he lived in and the joy of interaction.

I won’t soon forget the power of one man’s smile.

Acoustic Neuroma – Common misconceptions about facial paralysis

The Holidays – Two Sides of a Coin

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Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

Facial Paralysis and Pictures

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Pictures capture the memories of life – both significant and small. For Acoustic Neuroma survivors, it also causes serious stress and angst. We WANT to be in pictures, people in our lives encourage us, we cooperate, and are then frequently horrified by the results.

First, the facts.

Smiling intentionally and smiling spontaneously are two different things. How often do you walk around with a smile like in pictures? Our cheeks would ache and we would appear insincere. We move our mouths normally all day with minimal movement, and then say “CHEESE” with huge movement when a camera appears. So if you think about it, you’ll start to notice the distinct change in others’ faces at that moment that the camera appears.

The mechanics of smiling

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. A spontaneous smile originates when our cheeks lift our lips.

What? – There’s two ways to smile if you really think about it. Try it in front of a mirror. If we force a smile, it is using the muscles around our mouth. Those muscles are frequently suffering from a combination of paralysis and synkinesis following brain surgery. However, If we try to ignore our mouths and think happy thoughts and let our eyes smile, our cheeks pull up our lips. Subtle, but worth thinking about.

When the pictures come – We are accustomed to seeing ourselves in a mirror. Pictures show us as others see us, which is different. We might think we look okay in a mirror only to be horrified when we see a picture. The more symmetrical one’s face is, the more familiar their face will be in pictures. Since paralysis and synkinesis causes asymmetry, we then look very different to ourselves in a picture. So, when the pictures come, or someone hands you their camera phone, hold it up to a mirror and look at it in the mirror. You might be surprised. It doesn’t change the picture, but it lets you see yourself in the way that you are accustomed to.

Positioning – Huge life moments happen that we want to remember, but we cringe about having our picture taken. That’s where positioning comes in. In a formal picture setting, quietly mention to the photographer that you have a legitimate issue with your face and could they keep that in mind when positioning. I did that at my daughter’s wedding and was very pleased with the outcome. I’m turned so that the good side of my smile shows, and the “bad” side is turned away from the camera.

Kendra’s wedding

If you are in a candid setting, don’t lose the moment! Turn your face a bit to the side, or hold something in front of your bad side. I have a picture with my grandson where he is holding a balloon. You can only see the top half of his face and one side of mine. It is very cute with us peeking around the balloon. I’ve held a wine glass up (cheers) to cover half my face or the corner of my mouth. When my face was fully paralyzed on the right side, I turned totally sideways in front of the ocean. You see my profile with wind blowing my hair over the good side of my face. I love the picture. For me, it captures my pleasure at surviving, walking, and breathing ocean air. Call it art if you don’t consider it to be a portrait. . .

Ocean Air and Wind

Smile small – I hate it when I pose for a picture and someone I don’t know says “smile bigger!” I just say, “This is all you’re going to get.” A small, pleasant smile can minimize the two sides and look quite nice.

Makeup – Here’s a bonus for the ladies: A couple of things that can be done to help symmetry is to part our hair so that it draws the eye to the “normal” side of our face. Contrary to what you would think, you want the part of your hair on the paralysis side. Also, if you put lower eyeliner above the lashes on your larger looking eye, and under the lashes on the smaller looking eye, they will look better. On your lips, put lipstick on, but then add a touch of shiny gloss on the skinnier side of your upper lip. That will cause a slight optical illusion.

SO. . .

Even with these tips, there are times when you need to forget facial issues and “just” smile, let a picture be taken, and embrace that we are unique. It’s okay. There’s much more to us than our faces. There are many ways to show love, pleasure, or acceptance beyond a facial expression.

Smiling and Facial paralysis

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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 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 – Pay to Play

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The climb is worth the view. . .

For acoustic neuroma survivors, we frequently have to pay a price for participating in activities or being more active than usual. What can be a fun, exciting event for our friends and family frequently takes a toll on AN survivors. Our balance systems are compromised, and for many, our heads still hurt. Additionally, drugs are layered onto our systems to relieve head pain, causing fatigue or less mental clarity. Although acoustic neuroma brain tumors are benign, and we lived, craniotomies do cause the head to be compromised.

We participate though because we do want to! We want to spend time with friends and family. There are trips that we want to go on. We want to live life because we have learned to appreciate the value of it!

I thought might be helpful to explain the effect of a loud gathering on our battered brains – not as a complaint but to put you in our shoes for a moment (or maybe I should say in our heads). Especially as we are going into a Holiday weekend in the US. (Memorial Day)

Our senses are assaulted by noise that is considered normal to the rest of the world (and to us prior to surgery). Frankly, this can be exhausting. We have to plan appropriately to make sure we are adequately rested up prior to an event. After the event, we sometimes need up to a day of rest to get our heads to settle back down.

Our hearing, if single-sided deaf, challenges our brains to work overtime to sort out where noise is coming from or to focus on someone in front of us when our brains randomly pick a voice from across the room to hear instead. If you are on our deaf side and say something, we might unintentionally ignore you. Or do what I call “look like we’re going in for a kiss.” Let me explain. Because we have to turn our head so far around to get the correct ear positioned to hear you, it puts our face directly, and oddly, into yours. No sideways chatter for us – unless you’re on the correct side.

Our tinnitus gets louder in social settings. Typically it roars after the event for up to a day after we return to a quiet location.

Our dry eyes tend to get worse through the day. So by the time evening comes, you will probably see us putting eye drops in frequently, which still might not be adequate for our comfort. We may close our eyes during a concert – yes, to appreciate the music – but also to give our eye a rest.

Talking, even for a typical chatterbox, can become awkward in a noisy setting. We want to talk to you but our brain might be on overload and have difficulty concentrating on the topic at hand.

And then there’s balance. If you put us in a room where we have to stand around balancing a plate of food, a glass with beverage we may suddenly find ourselves weaving. Unsteady despite the fact that we typically drink little to no alcohol due to drugs we may be on, our compromised systems, or the sad fact that alcohol intensifies headaches.

So, if you want to have a great time with someone who has had an Acoustic Neuroma brain tumor, look for us over in the quietest corner, sitting down, and talking to one individual whose lips we may be partially reading.

Of course, the final challenge is group pictures for those of us who have facial paralysis – either full or partial. Please don’t ask us to smile bigger. Accept if we want to be turned a certain way that accentuates the side that actually smiles. A brief explanation to the photographer helps, but sometimes we just want to blend in and NOT talk about it.

Further, if you want to talk to us the next day about what a great party it was? You can find us at home in bed. Oh, and please, don’t be offended if we went home early. Moments with loved ones are cherished.

A Sharp Turn in Life – An Interview

Facial Paralysis: The Day I got My Sniff Back

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The first time I visited my facial therapist, Jackie, I learned a lot about facial muscles. Some pull up, and some pull down. Some are rather large, while others are narrow yet long, or short and wide. It had been almost a year since my surgery and the side of my face was just starting to move a bit. Jackie gave me the above diagram and explained to me that while my face was initially paralyzed on the right side, it was now a combination of paralyzed and frozen. While some movement had returned, it immediately had been frozen by muscles that quickly went into spasm. (She also explained Synkinesis, or the mis-wiring of the healing nerve, but I’ll address that another time) What?

Simply put, the brain had been trying to use those paralyzed muscles for so long that it tried too hard. So, when movement returned, the brain kept up with an intensity that was more than needed – causing Charlie Horses in my facial muscles. “But it doesn’t hurt. . .” I protested.

She explained that facial muscles experience Charlie Horse spasms just like your leg muscle in the middle of the night. Except, unlike leg muscles, facial muscles aren’t connected to bone at each end. “What?” She talked me through massaging, stretching, and squeezing various facial muscles until they did hurt. Releasing a facial spasm involves a combination of no pain but a lump, followed by intense sharp pain, and then a quick flash of more pain before it gives up and relaxes, now pain free and lump free. Allowing the muscle to now move as much as it can at this point – possible quite a bit and possible very little.

Acoustic Neuroma patients often have a characteristic look in the face. The lip comes up a bit with a flat motionless nostril. (Looking at the diagram you can see that several muscles come together in that lip/nose area.) In the summer of 2010, during a visit almost two years after my surgery, Jackie asked me to focus on the muscles in my nose. After having me push the very corners of my nose up like a pig snout, I laughed, but felt and saw a change. However, when she asked me to put my thumb in my nose and squeeze the side of my nose between my fingers, I looked at her. “Trust me,” she said.

“Well, ok.” So, I put my thumb into my nostril and squeezed my first finger and thumb together. (Just fyi, there’s lots a sanitizer involved in facial therapy sessions.)

“Just hold it.” And I did for probably a minute or two. “Now let go.”

I looked in the mirror on her desk and sniffed. The side of my nostril moved for the first time since surgery. My eyes got big and I grinned. “Did you see that? I got my sniff back.” And I sniffed again. And again.

And just one more time. “sniff”

Acoustic Neuroma Lessons – Eye Health #3

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The 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.

Smiling Again — Coming Back to Life and Faith After Brain Surgery

One Person's Acoustic Neuroma Story