Tag Archives: Traumatic Brain Injury

Acoustic Neuroma – Depression and Timelines


Depression and Acoustic Neuromas are definitely linked – in my non-professional, experiential opinion. The same sentiment has been expressed by many others throughout the acoustic neuroma world. I don’t know if it’s because our brains have been invaded or because our lives are too often turned upside down. Regardless of the reason, I can state that depression for our world, and the world of anyone recovering from a major medical crisis, is real.

When I was in the hospital, my family and I learned that “hospital time” is often very different from “clock time.”  Frequently, the time given for appointments, procedures, and hospital releases are truly more of an estimate or recommendation than an actual time that is met.

In defense of the medical profession, there are valid reasons for delays. Critical cases pop up. Our bodies heal slower than we (and the professionals) predicted. And when a doctor spends some extra time answering my questions, I always appreciate it and think about that when delayed – perhaps someone really needed an answer and I’m happy to think my doctor took the time to answer rather than abruptly leave the room in order to be punctual.

Therefore, it shouldn’t be a surprise to us that we each have our own “acoustic neuroma recovery” timeline. Each tumor grows at a different rate – though all within a somewhat common range. Each tumor causes different symptoms – all within a family of symptoms. And each recovery from treatment takes a unique path – somewhat within the guidelines (not strict rules) of the acoustic neuroma rules of nature.

Depression is one of those paths that each person takes – ranging from mildly set-back to debilitating and clinical. We are depressed that we got a brain tumor – but grateful to be alive. We are depressed to lose our old selves and each take our own time to return to ourselves – or more commonly come to terms and acceptance of a new self. One with different limitations wrapped into an old self who remembers.

Depression is not just a feeling, but a chemical imbalance in the brain that we need to really work at to change. Again, each person has their own path – some use therapy or pharmaceuticals. Others use natural holistic approaches. It is not often that we can just think our way out of depression. It’s like getting out of a well pit without a ladder – kind of hard to impossible on our own. One misconception about depression is that we want to stay there. We really don’t.

What is helpful from those around us is acceptance and grounding. Acceptance that we are going through a rough process that nobody can shortcut for us. Acceptance that we are still the same inside but fighting a new dragon. Grounding that we aren’t being judged for having our own path. Grounding that those who surround us are walking beside us.

It took time for the brain tumor to grow. It took time for our bodies to heal and adapt. It will definitely take time for our emotions and brain chemistry to adjust. Most importantly, it sometimes takes a long time to adjust our sense of value to the world and to redefine our individual comfort zones.

Acoustic Neuromas – Sleep is no longer a luxury

max sleeping

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. . .

Acoustic Neuroma brain tumors and Fatigue

1977 - I thought I was tired then. . .

1977 – I thought I was tired then. . .

I would have written this post sooner, but I was too tired.

Merriam defines fatigue as “the state of being very tired: extreme weariness.”  If you ask an acoustic neuroma survivor about fatigue there is a good chance that they will share a new appreciation for the word. We’ve all been exhausted in life, but there is something about a craniotomy that takes strength that is hard to regain. Yet it also brings out a strength we didn’t know we had.

Fatigue is a very familiar word for anyone who has had treatment for a brain tumor. We need naps. It’s hard to explain the feeling of such fatigue coming over you in the middle of the day that you HAVE to take a nap. Sometimes it is emphasized by a dry eye that will not be satisfied with artificial tears. Closing it is the only way to regain comfort for the remainder of the day. Sometimes it is a dizziness from overtaxing our vestibular (balance) system. Other times it is a matter of just being sick of that darn ringing in our ears and needing to escape it for a short time while unconscious. What used to be a ten minute cat nap is now an hour or two.

Fatigue is a recognized symptom of an AN, but not always discussed. There is an assumption that fatigue is caused by the surgery and recovery process but will go away when “healed.”  However, it is frequently a long term or permanent state. It is intensified by drugs that often are required for lingering issues after treatment – pain and depression as examples. It is also caused by the extra work that the brain has to do to compensate for balance or hearing.

There are synonyms for fatigue. Burnout is one that is usually associated with burning the candle at both ends. Burnout for a brain tumor survivor may be from continually treading water and trying to regain one’s old self. It may be from trying to return to work or life having to adjust to new challenges.

Frazzle is another synonym, implying out of control or mentally scattered. That is also accurate for AN survivors as we attempt to sort out sounds if left single sided deaf. Where did a sound come from?  Or what is the person in front of us saying when there is background music or noise. We can feel frazzled and feeling unbalanced from excessive movement.

Prostration is a word that I totally get now. Being powerless over the way that your body has removed control over when a good day will come or when you find yourself flat out on the ground either face down (prostrate) or face up with arms flailed to as if we are making a snow angel. Exhale. . . .

Antonyms exist for fatigue also. We do have days when we feel refreshed, and we appreciate them. We look at the puffy clouds against fall colors and inhale with a love for life and the people in our lives. We feel revitalized when we realize how little we now care about things that may have been enormous in our prior lives. We feel rested when we have a good night’s sleep without being awakened by a headache.

We have learned to live minute to minute. We have learned to take one step at a time. We have learned to live with fatigue and know when we have precious moments of rest and peace.

A common statement that I hear is “I don’t know how you do it.”  Well, like with anything, one step at a time. One obstacle at a time that is overcome or adapted to. Although we have fatigue we also have a strong desire to squeeze every moment out of life.

Reference – http://www.merriam-webster.com/dictionary/fatigue

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.

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.

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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Caregiver Tip – Time is the Ultimate Gift


I love spending time with my friends and family.  Yesterday, I spent time with Kayla and smiled after leaving.  I talked to Kendra on the phone and felt warm and connected even though she’s across the ocean living in Europe.  Sometimes after being with the people in my life I don’t recall the conversation, but always remember the time spent.  It gives me strength.

One of my friends laughs most at a line in my book where I describe my brother as “giddy.”  He normally isn’t, but was after a short phone call to me in the hospital right after my brain surgery.  I could hear in his voice that he was relieved that his sister was going to be OK.  It was short phone call, but encouraging and meaningful.  I found strength in his uncharacteristic giddiness.

I recall my friends visiting me right after getting home.  They were each there for only a few minutes, but they were moments – not just time.  Margie helped me feel understood in my terror.  Nancy pushed me forward, “You’ll be fine” in a confident tone.  Time given as a gift to me was like fuel to my spirit, building strength to move forward.

As a caregiver, the ultimate gift is time.  Just sitting with someone is very important and helpful.  When someone is facing a medical crisis or recovery, you are most likely not going to have an answer or solution.  There is a time to do research to help educate and evaluate treatment options, but there is also a time when you just need to sit. Together.

God tells us to be still at times and loves to have us spend quiet time listening to Him. Speaking to Him. Being together.  Pulling strength from that relationship.

We only have so much time in our day, our weeks, and ultimately our lives.  Sharing it with others is the ultimate gift.

Traumatic Brain Injury – Invisible Disability


IMG_6026 c

Brain surgery was the easy part. I slept through it. The moment I woke in incredible pain is when got difficult. Despite the intricate skills of two brain surgeons, I was now suffering from a Traumatic Brain Injury (TBI). I didn’t recognize at the time that I was entering the “in-between.” I was stuck between who I had been and someone I didn’t know yet.

Brain surgery left me with the recognition that I’m not who I used to be. I do know that I am far from alone. TBI effects brain tumor patients, accident victims, and soldiers fighting for our country.  With advances in the medical community, more people are surviving traumatic medical events than ever before.  A mystery to the medical field, TBI leaves many unanswered questions.

I struggle with my desire to deny disability’s grasp on my life while continually having to adapt to its grip. Chronic, oppressive head pain is disabling, but it can’t be seen – or proven. Navigating the “in-between” is a new reality.  I am fortunate to have my mental faculties, but am exhausted by head pain, hearing issues, and facial therapy. Yes, exhausted by the extra effort my brain requires to sort desired from undesired sensory input.

Adrenaline gets us through what we need to live but then our brains demand down time.My “Job” is now seeking answers, treatment, and relief. Everyone has their own journey through the forest of the unknown.

Once trauma happens to the brain, remnants cling for years or life. However, it needs to be noted that “living with TBI” includes the word “living.” I had heard there would be a “new me” but I wasn’t done with the old one. In pursuit of contentment, I eventually accepted that the old me was gone and acknowledged the new one. To my surprise, I found joy. I wish I had known before I fought change so hard that there are things to cling to and others to let go of. I wish I had known to accept, grow, and live. For me it was the loss of a career yet the gain of writing. The loss of speed yet the advantage of measured observation.

The experience of having an Acoustic Neuroma(AN) and resulting traumatic brain injury is very individual even as we seek camaraderie with others.  Common threads that I’ve seen in AN people are the choice of life, a decision to share humor, and nonstop perseverance. That strong common thread compels us to move forward without being dragged back any more than we have to be.  We continue to laugh and love.  Even in this new dimension.