Category Archives: acoustic neuroma story

Acoustic Neuroma – Common misconceptions about facial paralysis

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I will start with a disclaimer. Some people recover fully from short term facial paralysis and return to a fully functioning face. However, there are many of “us” who continue to have issues. This is for us.

I thought I’d spend some time addressing common misconceptions about facial paralysis.

“Facial Paralysis Goes Away” – it doesn’t in many cases. There is some improvement at times, but not always. There are degrees of improvement and each person is different.

“Healing is a one-time thing” – Faces that have some recovery commonly continue to change for years.

“Facial Therapy is like lifting weights” – No. It isn’t. Facial therapy focuses on tiny movements. You can “bully” your biceps into being bigger by lifting weights, but there is no such thing with the face. Trying to smile when your face is paralyzed is not going to help. (Although it won’t stop us from trying when we look in the mirror)  What is good is to focus on how the normal side feels and try to emulate that feeling and movement. (focus on what is working rather than what is not)

“It just comes back” – well, that is true for some people, and that is wonderful. However, for many it either doesn’t return to normal or returns partially with abnormalities (see next point)

“When it comes back, it will be back to the good old days” – No. While the brain is doing everything possible to get the face to move, commonly the fibers heal wrong. That causes Synkinesis, which is the result of mis-wiring. Picture a cable with many wires in it. If you cut it and then put it back together, think about how difficult it would be to line up each wire perfectly and match it with its prior other half. The odds are not good.

“Botox paralyses muscles, why would you do that to what little has healed?” – Botox can be very helpful to those with Synkinesis. Full paralysis of the face is more relaxed because there is no communication between the brain and the facial muscles. However, as the face begins to heal – the result of regeneration of the nerve from the point of injury to the ends – the brain is confused by Synkinesis. Spasms, tightness, and improper movements can be quite uncomfortable. (Heat also helps)

“Botox is a crutch” – for me, Botox was a reward of relief after months and months – years – of working through everything possible to figure out what was working, what was tightened in spasm, and what truly wasn’t working.

“Botox will retrain the brain” – Botox can do one of three things to your brain (or a combination).

1 – Allow the brain to take a break and forget improper movements. Ideally, it forgets and when the Botox wears off, the face is functioning more normally. (that is a lucky person).

2 – The brain is given a break, and over time will forget some improper movements because they haven’t been happening while deadened. (it does happen).

3 – I believe most commonly, (my opinion and experience) Botox will become a normal part of life. The location of each shot (many at a time) will change over time, but will continue to make significant improvement and relief.

“Anyone can do your Botox” – Botox should be done by a professional who is well trained in facial paralysis issues. It is not a beauty treatment. The goal is not to immobilize the good side of the face to match the placid side. It is to help the damaged side gain a balance between using what has healed correctly and minimizing what has healed incorrectly.

“At least you have no pain” – facial paralysis frequently included tightness, spasms, facial pain, and increased head pain.

“We don’t want pictures!”  We do want to participate in capturing life’s precious moments. However, we want advance warning so we can position our face to avoid very odd snapshots that do happen.

I’ve gotten used to my crooked smile. No, I don’t like it, but it has helped me prioritize what is important in life. Because our faces typically move minimally in normal life, it isn’t always as noticeable as we see in our minds. The exception to that is the exaggerated huge smile that everyone has in pictures that we can no longer do. And that’s ok. Life is imperfect, right?  Everyone has something. Facial paralysis just happens to be one of the more emotionally and socially difficult.

Go crooked smiles. . . and remember. . . When we smile internally, the beam is noticeable on the outside – Twinkling eyes, happy body language, half a smile that draws the eye. Facial paralysis is sometimes about what is working instead of what’s not.

Synkinesis is the result from miswiring of nerves after trauma. This result is manifested through involuntary muscular movements accompanying voluntary movements. For example, voluntary smiling will induce an involuntary contraction of the eye muscles causing the eye to squint when the subject smiles. (https://en.wikipedia.org/wiki/Synkinesis)

Acoustic Neuromas – Sleep is no longer a luxury

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I remember being a kid on Christmas Eve, unable to sleep and waking early with excitement. Why did my parents want to sleep in?

I remember being a teenager and sleeping all day if I had nothing to do. Noon would come and go. One PM might come and go. It was shocking when I got a job and had to actually set an alarm.

I remember being a mother of young children and appreciating any sleep I could get. I remember wishing that they would sleep just a little longer on Christmas Day.

I remember getting up before the roosters to head to work.  Yawning as I drove in to work, I longed for just a little more sleep.

I remember traveling to different time zones and going from wide awake at night to falling asleep when most inconvenient.

I remember the luxury of laying in bed on vacation  when I didn’t have to get up.  I think stretching helps to appreciate the unusual lack of urgency. I also remember appreciating silence.

And then I learned that I had an acoustic neuroma brain tumor.  For a while following surgery, I was tired but couldn’t sleep because of the pain. I longed for sleep to escape pain. Then I learnedto go to sleep with loud buzzing in my head. I’m now used to waking up and thinking a radio is playing when the house is actually silent. What does silence sound like, I try to remember. . .

Now, the new me, even after years, demands sleep. I need to sleep well at night. I need naps. I need breaks from busy days. Sometimes my head demands that I lay still and rest. Sometimes my eye demands that it be closed for awhile.

Fatigue is very common in the AN world. Our brains are working overtime to compensate to the permanent/long term injury resulting from the alien in our heads.

What is helpful is for family and friends to understand that and support sleep. Knowing that we aren’t being lazy, but we just need more rest than we used to. Encourage that nap for your loved one. Offer to sit for a few minutes while out shopping. Don’t be offended if your loved one closes their eyes when talking to you – and possibly drifts off. Understand if a quiet setting is preferred – noisy ones drain us – and frustrate us (and those who are trying to talk to us.)

And ANers out there – Don’t feel guilty about getting the rest that you need. Take naps.

Gotta go. It’s naptime. . .

The Unpredictability of the Acoustic Neuroma World

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Sunrise or sunset?  Does it matter?

So. . . I took a bit of a break from blogging. That was the point. Sometimes we need to step away from experiences in order to grow from them. Being a part of the AN World is a challenge and a blessing. I don’t say challenge in a whiny voice, but a determined one. We need each other for information sharing, encouragement, and understanding.

The AN world is (Me is a general term here, not me specifically)

  • Unpredictable – each outcome is unique.
  • Unrelenting – it doesn’t go away by itself, and treatment can leave one with “issues”; watch and wait involved many hours of not knowing the future.
  • Puzzling – Why me? Why didn’t my treatment go smoothly?  Why did others go smoothly?  Am I a wimp or was I missing something about it being the best kind of brain tumor.
  • Supportive –With today’s technology we are able to connect globally, which is amazing. It can also be frustrating when we read comments from people we don’t understand or don’t understand us. Sometimes we don’t need a solution for something that has no answer, but just an understanding. “Yep, me too. . .in my corner of the world get what you are saying from your corner.”
  • Confusing – I’m alive, but I still feel so conflicted. I’m grateful but exhausted, depressed, and trying to figure out who the “new me” is.
  • Exhausting – Fatigue just is in the AN world — for many. Fatigue that is not merely being tired. The brain is working overtime to compensate for damage that was done to eradicate the alien.
  • Ground hog day – For those with less than ideal outcomes, it can become redundant to deal with issues, some of which may have only so much room for improvement. For watch and wait, it’s waking up every day knowing that there’s an unpredictable alien in our head.

This AN world contains a set population of people with varied outcomes following treatment, blended with new people looking for an encouraging and positive prediction about their newly diagnosed life change. They are scared. We need to encourage and be realistic while not being “Debbie downer.” It’s a dance that sometimes causes friction. Both within each life and relationships and within each support group.

Do I tell a new person that it is no big deal?  As we’ve all been told “It’s the best kind of brain tumor you can get.” “Who needs two functioning ears when one will work?”

Do I scare the heck out of the newly diagnosed when it is a possibility that they will skate through and say “That was no big deal. I have no residual effects!”

When they wake up from surgery, or complete a treatment will they understand what they are experiencing?

We all dance around, “For me, it was xyz, but we can’t predict. . . “

I felt blindsided by my experience. I had received very encouraging predictions about how it would go. I closed my mind to other options. I was told that it would be terrible for a few days, but then all predictions were of a full recovery. I struggled as I scrambled to put my old self back together. It was only when I found peace with the fact that the old me had passed, just as youth does, that I was able to embrace my new life. I was able to see blessings through struggle, and learned perseverance of managing chronic pain. I found new interests, and refused to pull the covers over my head and die. I do allow myself to pull the covers over my head and let my body rest without guilt that a day was not productive. Eventually, I always get up and take that first step.

Would I do it any differently?  Probably not. However, it is important to support people wherever they are and accept their experiences and individual journeys. It is important to recognize the extremely broad and unpredictable range of outcomes.

No rhyme or reason, young or old, male or female, large or small tumor, or treatment type. Each journey is individual. Each smile is unique. What we each hear is unique. But we are all in this together.  Camaraderie and understanding is priceless.

ANAwareness – Acoustic Neuroma – Laughter

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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 – Facing the Un-Face-Able

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My latest ANA Ambassador contribution about facing disability is now up at

https://www.anausa.org/patient-ambassador/47-menu-articles/9/485-sally-stap

Here it is directly:

I had been told to expect a few miserable days after brain surgery, but it would get better. When I woke, all my energy was immediately sucked up by survival and pain management. It was a full time effort to keep my sanity (which is still up for debate) as I dealt with pain, new single sided deafness, a face that was half immobile, an eye that wouldn’t close without assistance, and balance that required a cane and supervision on stairs. Brain surgery recovery, for me, was much more than I had allowed myself to anticipate.

What I learned, when my body veered sharply from the expected and ideal recovery path, is that I had to become my own advocate. It was only I who could speak up for what I needed. Nobody was there to tell me how I felt. Nobody could tell me when I would feel better. Only I could determine what my body was capable of.

I had arranged to take three months off from work. The doctors had predicted that I could return to work part time after six weeks, but I pushed for a longer recovery because I had a job that required weekly travel and 120% presence. I was relieved when the doctor agreed on 3 months. I felt that I would feel normal in six weeks, and have six more to really heal and feel rested and healthy before returning to work.

My surgery was November 3, 2008. I spent 8 days in the hospital and then had family living with me for a few weeks. I was self-conscious of my half paralyzed face, but knew that I would find the inner strength to get past interacting with people. In my home, single sided deafness was reasonable until my first trip out in public where I learned about the challenges of SSD in a noisy setting.

The most challenging issue was my head. Day and night I had excruciating head pain. At two months out, I had put all of my energy into healing. I had rested for ridiculous lengths of time. However, I had to acknowledge I was not following the predicted timeline. I was still struggling to survive. I was not able to get through even one day without total exhaustion. I was not going to be able to return to work. Just acknowledging that fact to myself was difficult. Initially, it was like holding in a secret that was inevitably going to explode if I didn’t speak up. It was not enough to follow familiar patterns of the past by pushing past obstacles to get what I wanted. If I were to deny that I could work, it would be painful and embarrassing. I had failed to fulfil my supporters’ predictions of success!

As I pondered, felt sorry for myself, and tried to work around the biggest obstacle I had ever faced, I realized that I could not will it to happen. I could not force my body to return to normal nor think my headaches away. With physical pain, exhaustion and depression, I knew that I wouldn’t be able to focus on work and successfully return to my career.

So I started to say it out loud to family, friends, and then my colleagues. It was difficult to say the words, “I am not going to be able to return to work.” I had to lift my hands and admit defeat. That was not who I was. I met my deadlines regardless of what it took. Now, for the first time in my life I was having to admit that I wasn’t able to overcome an obstacle.

I told myself I wasn’t giving up, but just taking some extra time. I filed for long term disability, believing I merely needed a few additional months to allow my body to rest and heal. One of the disability company’s requirements was that I file for social security disability, which I laughed at. There was NO way that I was THAT disabled. I compliantly followed the process, convinced that it was going to be wasted effort because by the time my application was processed and rejected I would be back to normal.

There was something in my heart that cracked the day that I found out I was disabled enough to qualify. My application was approved the first time, which I had heard was rare. I had to find the energy to demonstrate disability when I was having trouble fighting to get through each day. Head pain is hard to prove, but it is also hard to disprove. It is an unmeasurable and miserable state. I dug deep and did what I had to do to take care of myself.

Well, months turned into years and I am still dealing with head pain. However, somewhere along the way, I found peace with the new me. I feel compassion that I didn’t know before. I have been given insights and respect for living in chronic pain while staying pleasant and present. While searching for meaning for all of this, I discovered I could still contribute to the world – just in a different way. I could write about my experiences, feelings, and hope. I could connect with people who felt misunderstood. I could express myself in painting where it didn’t matter if my hand has a tremor, or if I had to quit mid-project for a nap. I could find joy in my connection with others.

It all started with knowing my body and being my own advocate. Only we can take care of our precious selves. Only we can speak up for what we need.

 

ANAwareness – Fear and Acoustic Neuroma Diagnosis

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I was asked to be an ANAwareness Week Ambassador this year by the Acoustic Neuroma Association.  May is Brain Tumor Awareness month, and May 10-16.

This week I contributed a post on Acoustic Neuroma’s and Fear which has been posted on ANA’s Facebook page.

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If you can’t access Facebook or are on a mobile device, here’s the article: 

When I was fifty-one, in the midst of a very busy life, I was rudely interrupted by a brain tumor diagnosis. I didn’t have time for a medical crisis, let alone the horror of anyone entering my skull to treat it. However, through fear and an inevitable journey I learned that I was capable of surviving and growing. I would not only live, but learn to appreciate living in a way that I had never tasted before.

Life takes us where we sometimes don’t want or plan to go. Just like falling off the hay wagon in the middle of a hayride, we find ourselves flailing and reaching for something to steady our falling selves. Pain allows us to better appreciate a lack of pain. Despair allows us to recognize joy when it returns. Compassion received breeds the ability to be compassionate.

I had little fear when I went to an audiologist to measure a distinguishable decrease of hearing in my right ear. I wondered, somewhat casually, if anything could be done to correct an inner ear problem. After administering the test, the audiologist sent me to an ENT because he said my hearing loss was not normal, and possibly as bad as a brain tumor.

That was my first moment of fear, although quickly dismissed. I believe that anyone going through a medical crisis experiences fear. There’s an initial moment when the world changes. Fear and apprehension fills our minds when we get a hint that something is wrong.

Fear means we aren’t fully in control of our reactions, and each have our own unique ways of dealing with, denying, or sharing fear. It might be dry humor, prayer, or meditation. Some will curl up in a ball while others will scream. For me, fear was held closely to my heart, with casual sharing of potentially alarming information. “By the way, I might have a brain tumor.” For me, fear was externally silent or lighthearted; but very loud internally.

Fear began to germinate with the first use of “brain tumor.” Initially it was a seed deep inside pushing up as I pushed down. Unable to wrap my mind around actually having a brain tumor, I fit an MRI into my schedule. I went alone to my appointment to hear the news, willing it to be minimal. However, within a few minutes of seeing a large white blob on a computerized image of my brain, I learned what an acoustic neuroma brain tumor was specifically for Sally Stap — a benign, large growth that required immediate treatment. Fear sprouted and quickly grew from my stomach and branched to fill my heart and lungs. The word benign had deflated my worst assumptions but added confusion to the mix of emotions. I would live through this?

I spent all my energy attempting to control my involuntary reaction. Fearful not of the tumor, but fearful of breaking down in front of people. Isn’t that silly? I tried to not shake, or cry, or stammer. 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 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.

Always independent and private, each step of the journey required me to expose more of myself. First I could only say there was an abnormality. Eventually I was able to verbalize the words “brain tumor.” I could no longer keep fear contained in my imagination when the diagnosis became real. Fear taught me that it’s okay to depend on other people.

I was referred to Mayo Clinic and had to wait a couple weeks for an appointment. During that time, I did a lot of internet research. ANA forums allowed me to hear from people directly to understand how broad each outcome is and what I may or may not encounter. Knowledge is power so I learned what I could but then walked in the woods to abate my fears and calm my soul.

When I met the doctors at Mayo Clinic any discussion of treatment options was cut short as I was told surgery would be required. My tumor was large, I was displaying symptoms, and the tumor was pressing on my brain stem. What was important is that I was fully confident in the team I chose for treatment. I spent a month prior to surgery breathing, praying, and walking in the woods a lot. I talked to family, and had lunch with friends. Fear allowed me to depend on others and accept help.

On surgery day, sitting on a gurney in pre-op brought restlessness. I prayed. 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 challenges. The inability to escape pain brought fear that I had no energy to acknowledge. Each unpredictable step of recovery with few definitive answers was terrifying for a “black or white” person like me. 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. Only when I learned to manage my reaction to pain and adversity by relaxing and breathing was I able to find joy in my new and different self.

 

Acoustic Neuroma Life – Some days are up yet others. . .

My day hasn’t been all sunshine and roses. Oops. I’m determined to not use cliches in this blog entry. I want to find new ways to describe how it feels when “the bottom falls out”, or you “get that queasy feeling in the PIT of your stomach”, or “are blindsided” by emotion or circumstance. The bottom of life falls out and you go into a sinkhole?  What is a stomach pit?  Learning something unexpected leaves us feeling like we were plowed into a snowbank while walking along a sunny, summer path.

Can you tell I’ve been having a bad day?  I will be candid and say that out loud. It doesn’t matter why, because it isn’t the first or last. What matters is how I process it.

The day I’ve been having is heavy. It’s one of those days when I am not a cheerleader for anything. I feel lousy. My heart has become over weighted by “stuff’, which is pushing down on my abdomen (technically not my stomach) to cause crowded sensation and a squirmy feeling. A feeling that I don’t like. A feeling that I want to step away from.

Sometimes we push so hard to keep moving forward in life – and that is for everyone, not only acoustic neuroma patients – that we don’t take time to breathe and regroup before the next push. Attending a noisy party where we look straight into someone’s eyes to find that it wasn’t their voice we heard. A push to compartmentalize head pain, convincing everyone and ourselves that we’re just fine when we aren’t. It’s a fact that sometimes pain wins. Sometimes that next push is just getting up in the morning with a wonky head and buzzing in our ears. Sometimes it’s reaching deep for a sense of humor when all we really want to do is cry.

Well, today I had thoughts flowing through my head about moments lost, memories forgotten, regret for what could have been. I belabored lost opportunities in my life and things I cannot do. I failed to acknowledge successes by minimizing them because I’ve had a hot, soaking immersion in self-pity.

Life is not fair. I don’t get it. I don’t like it.

Well, what did I do about it?  First I took a nap. Then I went for a walk in the very cold Michigan spring air. I inhaled and exhaled. I gave myself time to wallow, but reminded myself of the reasons I prefer to keep going. I reminded myself that I can breathe. I can find pleasure in new things. Yes, kicking and screaming at the things left behind, but new and pleasurable nonetheless. If we lived our lives based on losses, we’d still be missing our first favorite t-shirt. Like the navy blue Adidas t-shirt that I had when I was twenty. (not that I remember how comfortable it was or wonder when I let it slip away. . .)

I love life. Unfair, stinky, painful life. I recognize that some of the toughest times that I’ve experienced left me feeling stronger or closer to someone in my life. I love joy and the feeling that inflates my heart with warmth instead of weighing it down with stuff. Today I had to take it back a couple steps from my usual fervor. I stopped looking at the pile of stuff that needs to be addressed and focused on the next minute, and then the next hour. I sent my pouting mind to a happy place. A place where I am alive, taking things a day at a time, knowing that a bad days will be followed by good ones. And knowing that really bad days allow me to recognize and appreciate the joy of a spectacular day.

Thanks. I feel better.  Time to go play with my new puppy.

Acoustic Neuroma Life – It’s a New Year

Fortune

Fortune

 

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 Holidays – Two Sides of a Coin

half and half

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.

Do I have an Acoustic Neuroma? Symptoms

Wondering. . .

Wondering. . .

First, I need to make it very clear that only a medical professional can diagnose an Acoustic Neuroma brain tumor with the assistance of an MRI or other imaging equipment. This is a list of symptoms that one may  or may not have to indicate the presence of a tumor lurking in your gray matter.

Most people have never heard of an acoustic neuroma. Even when I suspected that there was a tumor growing in my head, doing a search on “brain tumor” was way too broad and overwhelming. It wasn’t until after my MRI that I learned the name and could educate myself.

I have listed some common complaints leading to a diagnosis. However, as we frequently say, each acoustic neuroma tumor and treatment experience is as unique as a snowflake. They have snow in common but their size and shape vary individually. Each person has a different symptom that prods them to seek treatment. Each person has a little different location of the tumor – some more into the ear canal, some more in the brain. Some push on the brain stem, and most crown the cerebellum. Acoustic Neuromas are easily identified with imaging as it has a distinctive location and general shape.

Here are some common issues:

Hearing Loss – Most people have changes in their hearing as they age. However, if one ear has lost significantly more hearing than the other, it is called unilateral hearing loss which could indicate a tumor growing into the ear canal surrounding the auditory nerve. This was my trigger for treatment.

Tinnitus – Loud ringing in the ears can be caused by many things and is not typically a primary driver in diagnosis. However, as it gets louder, we become more and more aware of it. We hope that treatment will result in less ringing, but unfortunately the gift that keeps giving frequently takes our hearing and leaves loudness in its place as the brain is confused and tries to turn up the volume on the deaf side.

Facial sensations or numbness – I felt like I was drooling but my face was dry. My effected eye started to lose its blink reflex so it was open wider in pictures. Each person’s symptoms are based on how the facial nerve is affected. Because there isn’t a lot of empty space in our heads (true, despite common jokes to the contrary), when the acoustic neuroma grows, it crowds the facial nerve. Following treatment, some people have short or long-term facial paralysis and some do not. In my case, the facial nerve had stretched out to be a flat ribbon stuck to the tumor, which was not good.

Taste changes or difficulty swallowing – Again, nerves that are in close proximity may become effected. Following treatment, these may begin to happen on a short or long term basis. For me, swallowing wasn’t a problem, but food tasted tinny after surgery for a while. Occasionally a strange taste still returns for a short time.

Vertigo and balance issues – if the room is spinning and you haven’t had a drink, you have vertigo. It is a strange sensation that is helped with a foot on the floor or a hand on the wall. I had vertigo many years before diagnosis, attributed it to frequent flying, and held the wall for a week or two until it subsided. My brain adjusted to the loss of right cerebellum functioning and shifted to the left side, along with using other input for balance. As intricate as the brain is, it is very adaptable. My surgeons were surprised that I wasn’t complaining of balance issues despite the size and location of my tumor. They said my left cerebellum had taken over gradually.

Headaches – Many acoustic neuroma patients have had unexplained. I did not have headaches prior to surgery, but still have them afterward – six years out.

Mental confusion – This is not as common but can be linked to acoustic neuromas. The location of the tumor primarily effects our physical instead of mental faculties, but with the brain anything is possible. Following treatment, the same is true.

Fatique – Fatigue can come on very slowly so it hard to link with a brain tumor. However, both before and after treatment is can be experienced.

Finding out, or even suspecting that you have an AN is scary. It is important to remember that experiencing one or more of these symptoms does not mean that you have an acoustic neuroma, but it is worth having checked out. Many of us wish that we had recognized some of these signs earlier. However, the tumor typically grows quite slowly so we just don’t notice symptoms until afterward. Hindsight. . . well, you know. . .

What symptoms did you experience if you’ve had an acoustic neuroma?  Did I miss any?