Tag Archives: acoustic neuroma experience

Acoustic Neuroma Life – It’s a New Year




Welcome to 2015!

Years ago when I was too lazy to cook, my family established a holiday tradition of Chinese Food for our gatherings around the New Year. This year we added ice cream sundaes, which I have to say was a great pairing. We got together at 11:00 am to accommodate naptime for my grandsons, and celebrated that we were all able to get together at the same time with the exception of a nephew who had something more fun to do. Well, to clarify – everyone who lives in the USA (miss you Kendra & Adam).

I think fortune cookies are silly. But I am the first one to break them out after dinner. I always anticipate my “fortune”, which will be a prediction, stupid quote, or sappy “feel good” line. Yes, despite many disappointing fortunes, I love opening the little cookie and squinting, then searching for reading glasses, to read the tiny message. This year mine said:

“You will have good luck and overcome many hardships.”

Okay. . . that was contradictory – and true. In just reviewing the last year, I can see both.  Of course, we have to look back to brain surgery six years ago to see the biggest hardship that I’ve faced. Six years of chronic pain has not been fun. However, I recall loving life in 2014 and being present. I wake up in the morning, even with a now familiar groan of head pain, grateful for the opportunity to live another day. Every day that I live I appreciate in ways that I never took the time to do before.

I look back fondly at 2014. I gained a new grandson and my toddler grandson continued to become cuter all the time. (yea, hard to believe) I had some great interactions with other writers. I’ve had amazing encouragement and feedback from readers of my blog and book. I took up encaustic painting and also snapped a few pictures of our amazing world. I feel that I’ve had good luck. (oh, let’s not forget the amazing stick art that I’ve mastered for this blog)

Oh, yes, the hardships came too. I had a 12 day hospitalization for head pain and a brief return to Mayo for skull surgery with no answers for my headaches. And if that wasn’t enough, I broke my kneecap in Germany — BEFORE we make it to the Chocolate Museum (yes, really). In 2014 I lost my two “last” pets that saw me through some rough times – Gina the Italian Greyhound and Gabby the noisy cat.

I had the good luck to experience feelings.  Even though I don’t appreciate spending days in bed with a pillow over my head, it helps me feel lucky on days that allow me to enjoy life. I’ve learned to inhale and exhale.

2015 is starting out fresh. My knee is healed and I am delighted to be walking again. Every time I bend my leg, I smile.  Last year at this time I took my knee for granted. I have an empty house and fondly remember many pets throughout in my life. I find myself eager to get the next one despite an uncountable number of groans at cleaning up messes and being woken up to go outside in the midst of winter. Those pet headaches and groans have been far outnumbered by the number of looks, nudges, walks, and naps that I’ve had with wonderful four legged companions. While I grieve the loss of two more, I rub my hands together in anticipation of who will be next.

Yes, 2015 will bring good luck. . . and because it is LIFE I know there will be hardships that I will overcome.

Happy New Year!!


The Good Side of Surviving An Acoustic Neuroma Brain Tumor

IMG_5452 cI have to tell you that I still kind of bristle when someone says, “Hasn’t this turned out to be a blessing in your life?”  Well, no. I still would prefer to have NOT had a brain tumor. I’m still working on the “be thankful in all things” part of my experience. I just have to say.

However, given that I did have one (without my vote), there are good things that followed the experience. I have a new appreciation for:

  • Life — At times, because depression is a big part of Acoustic Neuroma recovery that is frequently unspoken or acknowledged, I felt guilty for a long time when I thought death would be better. I was in pain and my life was upside down and I just didn’t see the point. However, with a lot of work, I do now see the value of life and treasure it.
  • Family and friends – see above. If it wasn’t for the people in my life I wouldn’t have had a life preserver to hold while I regained my bearings.
  • The medical profession – not that I wasn’t impressed with doctors and nurses – but when you go to sleep not knowing if you will wake up, you pay more attention.
  • Modern medicine – Having access to modern medicine and state of the art equipment made a huge difference in my outcome. Even though I do still have “issues”, it sure turned out better than it would have in the pioneer days.
  • Research – Even as advanced as medicine and disease understanding has come, there is more that we don’t know than we do know. Advancements are still needed. Research into the cause of disease and the cause of side effects is lacking.
  • Little moments – Sometimes just having one good moment or experience is worth a day of pain in payment. That moment is savored more and replayed in my mind as I distract myself from pain.
  • Big moments – I just, perhaps arrogantly, expected to be here for my daughters’ weddings and the birth of grandchildren. I now appreciate those moments and acknowledge what I would have missed if I hadn’t had survived a brain tumor.
  • Playing through pain – Sometimes a precious moment happens to coincide with an incredible headache. Sometimes I find it possible to push the pain back enough to be in the moment that will never come again.
  • Dog intuition – my dogs showed incredible insight as they slept when I slept and played when I played. They kept me grounded by reminding me that life does go on and they needed food, walks, and to go outside. They are now gone but I have wonderful memories of their emotional support when I needed them.
  • Cat indifference – My cat is always there to curl up for a nap, but has few other demands. She has no use for my complaints and just flicks her tail in response. She helps me recognize that I am not the center of the universe. There are bigger issues, like catching a mouse.
  • Sight – even though I can’t see as well as I used to and struggle with a dry eye, I appreciate what I can see. I appreciate colors and variation in shades. I appreciate sunny blue skies as well as the darkness of ominous snow clouds.
  • Hearing – single sided hearing reminds me that I can hear. Not optimally, as nature intended, but I still hear my grandson’s laugh and adorable voice – even if I can’t figure out where it is coming from. I can still hear my daughters when they say “Mom.”
  • Silence – I no longer have silence due to the ringing in my head, but I can appreciate how the ringing can calm down in quiet, tranquil settings.

The list could go on.  So, bottom line – I don’t recommend having a brain tumor, but it does help us grow in our appreciation of life. It does help us prioritize what is important and what is

Life is worth living

Life is worth living

insignificant. It is something that we want to hold tight. We know that life is short.


The Good Side of Single Sided Hearing (or SSD)

glass half full

Glass Half Full

Single Sided Deaf or Single Sided Hearing? Let’s look at the good side of this condition many of us live with. Today, I choose the glass half full. I am fortunate enough to have great people in my life who are with me on this journey. I really appreciate each and every one of them. They have helped me laugh even as I sigh, and that has helped me seek joy even in life changes that I didn’t choose.  One of those is hearing in only one ear:

  • Even though I miss what someone just said on my deaf side, I may hear some good gossip from across the room on the good side (the ability to distinguish the source or distance of sounds is gone)
  • I “really” see the person on my deaf side because I turn my head almost 180 degrees to hear them, positioning my baby blues to gaze directly into theirs.
  • I’ve trained my family and friends to walk on the proper side, which sometimes turns into a funny dance until everyone is properly aligned. Sometimes they figure it out themselves when I don’t respond to a question and accept their responsibility to reposition. “Oh yea. . .”
  • I make people feel special at dinner by sitting with them on my good side. Or people wait for me to choose where I sit first, allowing me to determine the best spot for hearing.
  • I don’t have to fight the line to put my name on a restaurant waiting list because my friends and family do it while I quietly relinquish control and take a seat in the waiting zone.
  • I could get a cool tattoo with an interesting graphic designed to indicate my deaf side (I haven’t chosen to do this but many have)
  • When talking on the phone, the caller has my full attention. Of course, that is unfortunate for anyone on the bad side saying, unheard, “Have them pick up pizza on the way.”
  • Multitasking– trying to perform tasks while listening is difficult so I tend to be very focused on one or the other. I have an excuse for not knitting.
  • I’ve become accustomed to reading television using closed captioning, thereby not missing what people are saying in unfamiliar accents or low, menacing voices. I can sit back and enjoy popcorn event though crunching drowns out voices.
  • I’ve learned that “head shadowing” is the term for what causes many things said on the side of the deaf ear to be lost completely or sound like they are coming from another room. Not to be technical but low-frequency, long-wavelength sounds bend around a person’s head and are easier to hear. High-frequency, short-wavelength sounds are not as elastic and do not bend around to the good ear. The frequencies of speech vary, causing patchiness in what is heard.  I just tell people, “Let me know if I’m supposed to hear anything.”  This allows me to not worry about what I might be missing.  I can’t be held responsible for what I don’t hear, right? (wink)
  • Oh, and the obvious. . . Sleeping is awesome when I put my good ear down on the pillow and sleep like a baby.

Acoustic Neuromas – Alive. . . AND. . .living

Sally Stap

Having an acoustic neuroma brain tumor gives us a new view of life, relationships, and priorities.  While we each have lived a unique although shared journey with our outcomes, the word “LIVED” needs emphasis.  Even as we seek understanding and self-acceptance, we are alive and want to squeeze every drop of pleasure possible from each day.

Despite all or any issues that we deal with daily, there are times when we just do what we want to do.  We spend a day shopping too long until we are drop-dead tired with a head that says stop.  We go to a concert despite the tinnitus that will be louder afterward. We swing at the playground with our grandchildren, or children, even though we’ll feel woozy when we get off.  It’s the price we are willing to pay for fun with our families and loved ones.

This past weekend was just that for me.  My family has been going up to Mackinac Island, at the top of Michigan’s mitten, for more years than I can remember.  Not every year, but at least every few years so we can enjoy the island’s traditions – ferry’s that go back and forth to the mainland, horses and bicycles only, fudge in every other store, and unpredictability in weather. Sometimes it’s hot, hot, hot.  Other times it’s impossible to cut the wind with seemingly endless layers.  This time it was pleasant but foggy.  My best laid plans to take a ferry ride under the Mackinac Bridge were thwarted by thick fog.

I know that wind and too much activity is a problem for my head.  However, this weekend I lived life.  I rode on top of a ferry to the island with my sweatshirt pulled tight over my ears.  I closed my eyes and absorbed as much of the wind and air and life that I could.  I overindulged in Fudge (basically a requirement on the island).  I saw my grandson touch a horsey for the first time.  I saw the awe in his eyes at the strange sights of horses and bicycles crossing paths.  I saw my daughter manage to not scream when a butterfly landed on her head.  The love for her child gave her a brave, but guarded smile as she showed how lovely the experience was.

I made sure that our family all wore matching t-shirts, which I know is absolutely dorky.  But we lived and loved another weekend away on our “Stap-inaw Mackinaw 2014” adventure.  Of course, that included asking a stranger to take a picture of twelve people in matching t-shirts waiting to head in different directions for the day’s activities.

Today I’m at home again, and accept without guilt that I slept all morning after rising to take some medication.  Disabled isn’t dead.  Disabled is adapting to life by giving in to our less than perfect body while pushing it to live life.

Yes, acoustic neuromas bring many challenges, but they also bring appreciation for normalcy.  They emphasize that life is as delicate as a butterfly’s wings.  They remind us that, even with one ear, we can hear the clip clop of horses hooves.  We are alive. . . AND living.

Fear and Acoustic Neuroma Brain Tumors



Fear is a huge four letter word. Anyone going through a medical crisis experiences fear. It fills our minds when we get that first hint that something is wrong. We fear pain, death, and change.

Fear triggers our autonomic nervous system – what controls our bodies below the level of consciousness. This effects our heart rate, breathing, digestion and even perspiration. Autonomic functions are involuntary but work with voluntary control in the somatic nervous system. Wow. That sounded technical.

What it means is that we are not fully in control of our reactions. So when we feel scared, it’s ok. For some that means dry humor. For others it means prayer and meditation. For some it means curling up in a ball and for others it’s loud and screaming. As much as we appreciate the support of the people in our lives, only we will experience what we live and feel.

Fear is something that Acoustic Neuroma survivors know the meaning and feel of. I sure felt it. At first it was rather abstract and distant. I knew something was going on in my head and my mind raced between “it will be nothing” and “I’m going to die.”   That is a very wide range and felt dizzying.

Each step of seeking answers to my symptoms required me to expose more data to my family. There was a point when I said for the first time out loud that I might have a brain tumor. I felt almost silly for worrying the people in my life but could no longer keep it contained in my imagination.

When I was told “You have a brain tumor”, fear took over my body such that I spent all my energy trying to control myself. I tried to not shake, or cry, or stammer, but it happened. I wanted to speak but words would not come. My mind raced with questions but my mouth quivered. Everyone is different, but we all fight that balance of voluntary and involuntary when we hear the word officially. Telling my family and friends felt surreal, as did all planning for treatment. Fear ranged from controlled worry and fascination to the desire to escape my body.

Sitting on a gurney in a hospital gown brought restlessness. I prayed even as I looked around the surgery prep room and watched other patients being rolled to their destinies. I wanted to be unconscious. As each medical professional did their part to prep me, surgery and its outcome was creeping nearer and slower. Having my doctor’s initials scribbled behind my ear raised the hair on the back my head. Entering the operating room was cold and noisy. I heard metal on metal as the instruments were prepared. I felt peace. It was time. I put myself in God’s hands and went to sleep, fear put aside for the moment.

Waking up brought new fear. The inability to escape pain brought fear that I had no energy to acknowledge. Each unpredictable step of recovery giving no definitive answers to the future was terrifying. Only when I learned to accept that I’m living “only in the moment that I’m in” was I able to gain the gift of living and not fearing.


Life After Acoustic Neuroma – A day with Headpain

singing paulo

I wake, still for a minute. I slowly stretch and turn my head on the pillow, all in drowsy gratitude. Suddenly my head is struck with pain faster than a cobra’s attack. Eyes pop open, my neck stiffens and the whole right side of my head tightens. There’s nothing like a postcraniotomy headache. It will be a bad head day.

On a bad head day, my brain feels raw inside my skull as if there’s no padding between my brain and skull. Nature provides padding through cerebrospinal fluid that flows around the brain and spinal cord, but on a bad head day I feel like I’m running on empty.

After taking a few slow breaths, I slowly ease out of bed, placing my feet firmly on the floor, raising my head and body in slow motion. I sit for a minute and breathe steadily. In slow, deliberate steps, I stand, wait for my balance to adjust to the new day, and slowly head to the bathroom. Moving too fast will freeze my brain in a lock that stops all movement. Most people are familiar with that frozen brain feeling when you drink something cold too fast, times ten. I have learned to live with what is called “Wonky Head” by acoustic neuroma patients.

Like a drunkard, I head to the bathroom, feeling like I have an incredible hangover. Surgery destroyed my balance system, atrophying my right cerebellum, requiring my brain to re-calibrate itself in the morning. Between the bed and bathroom, like pinball in slow motion, I touch my dresser to the left, the wall to the right and then stop, gripping the bathroom door jamb with both hands. Touching things makes me feel more grounded.

Weather changes could be one reason for such a bad head day. I am quite sure the doctors inserted a barometer in my skull after they opened it with their fancy diamond drill bit. I hold my head, as if it would help.
Eventually I drag myself to the shower. Hot water relaxes my head so I empty the hot water heater.

I slowly dress without bending or allowing my head to drop below my heart. The resulting head pain would send me back to bed for at least a half hour. If I drop my hairbrush on the floor, I stare at it like it was a hundred miles away. It isn’t worth bending for. I reach for another brush. The first brush could stay on the floor until a better day.

Eventually, I feel my head relaxing. I never take it for granted as I feel together enough to take on the rest of my day. For my brain’s sake, I always hope to avoid sneezing and coughing that will cause an immediate setback.

The next morning it begins again. I awaken and cautiously move, hoping for a better day. Perhaps I would feel up to picking up that hairbrush today.

Lessons Learned – I just wanted a soda


There’s a time when caramel colored, sweet, tangy, syrupy, carbonated beverages really hit the spot for me.

A couple days following my brain surgery, I desired a cola. I had been given jello and juice, but nothing tasted right. I wanted to taste something familiar. So, the nurse brought me a cup of ice and a can of Pepsi. I salivated as I watched the caramel liquid flow and bubble over ice. I savored the bubbles as they rose and fell in the white Styrofoam cup. I almost shook with excitement as I drew the drink and straw to my mouth.

By this point, I had learned how to drink again. I held the droopy side of my mouth closed and I drank through a straw held between my still functioning side’s lips.

I almost closed my eyes in delight at this little pleasure and return to normalcy that I anticipated with my first sip of Pepsi. I slowly drew liquid through the straw and onto my tongue as if it were a fine wine I was tasting.

Almost spitting but instead gulping awkwardly, I said, “NO! It tastes wrong,” I opened my eyes widely. “Something must be wrong with this can.” But then it hit me, just as each loss I had encountered since waking up. The nerve that managed my sense of taste had been bruised and made soda taste metallic, tasteless, and wrong. Everything had been bland and tasteless so far, but I hadn’t expected soda to taste worse!

So, I pushed the cup and can away and returned to water and ice. Ice that was as crushed as my heart.

Over time, my taste returned to normal, but there are still times when a metallic taste returns just long enough to remind me of that first Pepsi after surgery. I now savor flavors — and an occasional soda.

Acoustic Neuroma Lessons – Eye Health #3

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.

Goodreads Giveaway of Smiling Again

Goodreads Book Giveaway

Smiling Again by Sally Stap

Smiling Again

by Sally Stap

Giveaway ends April 24, 2014.

See the giveaway details
at Goodreads.

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