Category Archives: acoustic neuroma story

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.

Radio Interview Friday!

radio

I will be on Voice America’s internet radio show, “Speaking of Health”, hosted by Dr. Michael Kudlas this Friday, May 16 at 1:00 pm edt.

The URL is below.  If you can’t listen when it’s live, it will be available to replay afterward.

http://www.voiceamerica.com/show/2201/speaking-of-health

Press Release:

http://prlog.org/12323068

Wish me luck. . . .

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.

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.