Tag Archives: adapting

Acoustic Neuroma – How I Face My Face

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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.

SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

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Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

ANAwareness – Acoustic Neuroma – Laughter

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sallynancy

 

Here is one of my last two contributions to ANAwareness week.

I wrote about laughter. . . how I choose to laugh instead of cry. . . (admittedly not ALL the time)

https://www.anausa.org/patient-ambassador

For quite some time following surgery, I took everything seriously. I still had a sense of humor, but was overwhelmed by the new me and deeply encased by a cocoon of self-pity. However, over time, my embarrassment with facial paralysis and awkwardness of single sided deafness gave way to acceptance. I saw, through my friends’ eyes, that I had a choice to laugh instead of cry.

I learned to walk carefully as I recalibrated my confused vestibular system. Despite my caution, sometimes I randomly veered to the left. One day at the grocery store, Kayla and I had two bags and a jug of milk. So when we headed out to the car, Kayla grabbed the bags and made a suggestion. If I carried the milk jug with my right hand, it might balance me and I wouldn’t veer left randomly as much. Well, it worked. We laughed at the uniqueness of the “balance tool.” We agreed the lesson for the day was “Sometimes you need to get a new tool or find a new use for an old one.”

Four months following surgery, I visited a friend for a few days. Nancy met me at the airport and took me home to a well-equipped guest room, complete with a heating pad for my head and face. Ever the observant friend, she quickly learned my new pain patterns and triggers. Whenever I got up, I would take one or two steps and have to stop for an overwhelming brain freeze to subside. She and her husband learned to stop and wait for me, continuing our conversation without a break.

Once, I bent down to plug in my ever-present heating pad and fell over, my balance still very compromised. Her husband simply stood up, walked over, offered me a hand, and after seeing me vertical again, returned to his chair and television program as if nothing of dramatic importance had occurred. They learned to walk between me and the street in case I veered left unexpectedly, and they didn’t want me to get run over. We learned to laugh about it and they just knew what would happen and anticipated it – always with a smile or a chuckle.

At about six months after the surgery, I went on vacation with another Nancy friend and her family. They had an extra seat and bed for spring break and I had nothing better to do. My days were filled with getting up, being in pain, and going to bed. I decided that it couldn’t be much worse while sitting by the ocean. We walked on the beach, and with limited stamina I would have to turn back much sooner than they typically would.  I offered to head back alone so they could continue their walk.

Nancy said firmly, “No.  We are going back with you.  I am not going to be the one to call your family and tell them that you veered into the ocean on my watch!” And we would turn around and head back – with someone between me and the ocean.

Of course, cameras are a big part of vacations and we wanted pictures. I really didn’t want my dour looking face to be captured though. So Nancy suggested that if we BOTH held the corners of our mouths in a smiling pose that nobody would be able to tell what was paralyzed. I still smile when I see the picture of the two of us holding smiles in place. We laughed so hard we had trouble holding our faces.

The favorite story that she loves to retell from that trip is the French fry story. For some reason, I don’t like asking people to repeat themselves when I don’t hear what they say. So I make an assumption about what I think they said and answer that question. It has caused some puzzled looks, apologies, and chuckles. On this particular adventure, we approached the pool bar with loud music blasting. I ordered a cheeseburger for lunch. The waitress was entering it on the computer and asked me a question that I heard none of. Making an assumption, I said, “I’ll put it on my charge card.”

Nancy started to laugh.  I mean really laugh, “She asked you if you wanted fries with that!”

“Oh, oops.”  I started to feel embarrassed, but with her laughter, I couldn’t help but see the humor. The feeling that I had inside transformed from embarrassment to acceptance and humor. That was the instant that my attitude began to change.

Going out to lunch or dinner with friends can be challenging. I always position myself in the chair that allows me to best hear the conversation. My friends joke about how they can tell who I’m most interested in listening to by where I sit at the table and who is on my right side.

We tend to lean to the left when we greet or part with a hug. My friends will often give me a hug and whisper something like “good to see you”, or “keep in touch.” This is frustrating to me, because being deaf in the right ear means I always miss those endearing little comments. I’ve learned to let them know that they are definitely the more “challenged” ones by hugging back and whispering into their ear, “If you want me to know what you are saying to me, that’s the wrong ear to whisper in.”  We then laugh and they correct themselves.

When together, my daughters have learned to walk on my left side. They frequently tell me after spending time with me, they’ll unconsciously do the same with their friends who aren’t deaf in one ear. “Oh yea,” they’ll realize, “I don’t have to walk your left side!”  Which always brings puzzled looks from their friends.

I was in a hotel one day and called the front desk but the line was dead. I hung up twice before I realized I was holding the phone to my right ear. I called again and apologized for hanging up on the poor lady twice. I laughed, and said, “Did I just hang up on you twice?”

“Yes,” she answered tentatively.

“Sorry, I am still getting used to being deaf in one ear. I wondered why the line was dead.”  I laughed, and she did too.

We have a choice many times to laugh or cry. While I do both, when I have a moment to choose, I choose laughter.

Acoustic Neuroma – Are you Coping or Adapting?

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Coping Vs. Adapting

Coping Vs. Adapting

I have taken exception to the word cope when discussing my post-acoustic neuroma life. I prefer the word adapt. Given that I haven’t fully understood why I bristle, I decided to dig into the two words a bit deeper. Satisfied that my instincts were correct – or my understanding of their definitions, I now feel even more able to clarify differences between the words.

Coping is immediate. When we are first diagnosed, we enter survival mode. We look for short-term, immediate answers. We react and, frankly, panic. We talk to doctors, family, friends, and often reach out through social media for answers. We may weigh treatment options, or be only given one choice depending on our individual situation.

Adaptation is longer term. Once we have “coped” with the immediate crisis, we shift into life with a brain tumor diagnosis. We adapt practices in our lives that are sustained long term – regular medication, daily naps, no roller coasters, or possibly new diets. Adaptation to life either after Acoustic Neuroma removal or watch & wait is a continuous process. Our bodies continue to heal, sometimes at a much slower rate than desired. Or our watched tumors continue to grow, or hopefully not. While those of us who had treatment learn to live with post-effects, watching a tumor that’s still in your head for changes is no picnic either.

As we adapt, we learn to plan our time and energy. We have gained a new appreciation for life and frequently have new priorities.  We use our “resources” wisely. We appreciate what we have and learn to focus more on life than issues.  We find ways of facing new adversity in different ways. We find a blend of our old selves and the new, adapting to the person we have become. We treasure relationships and life events that we know we could easily have missed.

So while, we do cope with our diagnosis, treatment, waiting, or after-effects, we have become skilled at adapting in sustainable ways to a life newly appreciated.

Thank you for allowing me to make the distinction. It makes me happy.