Tag Archives: acoustic neuroma

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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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. . .

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.

Acoustic Neuroma – Facing the Un-Face-Able

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Red flower

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.

ANAUSA

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. . .

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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 Neuromas and New Beginnings

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Maxwell

Maxwell

Sometimes we need new beginnings. Sometimes new beginning are thrust upon us.

Have you ever pondered how many new beginnings you’ve had in life? We frequently focus on losses, and uninvited change. However, each of these events have also provided new beginnings. Each event starts with a feeling in the pit of our stomachs that tell us we can’t but then we do.

I have had many pets in life, and have loved them all. They delighted and frustrated me. But they have all passed on. Today I am in the midst of a new beginning with Maxwell, my new pup. I could have gotten a breed that I had previously had, but chose to get a mixture different from anything in the past.

Maxwell and I plan to have many happy years together. That may or may not happen, but I can live today and enjoy where we are now. I am still sad about the loss of each and every one of my previous pets, but I’m delighted to be at a new beginning, again.

My career spanned many years and included delightful successes as well as frustrating changes or lost opportunities. When I look back, each of those organizational or company changes brought new beginnings. I met people who I would not have known. I missed some (admittedly not all) coworkers, but made new acquaintances and lifelong friends.

I never, ever, ever would have chosen to have a brain tumor. However, going through this experience has given me gifts that I would not have received otherwise (yea, in addition to unwelcome gifts of headaches, constant ringing in my ears, single sided deafness and facial paralysis issues). I’ve seen some common threads among people who have struggled with the unthinkable and survived; even if survival meant a new life.

Compassion – I appreciate the medical community more now because I have experienced the commitment and caring that is consistently provided to people in their most vulnerable states. At times I had admittedly been frustrated by a lack of answers, but the compassion that people are capable of is humbling. The way that the Acoustic Neuroma world circles newbies into the fold with support and answers is inspiring.

Humor – Through my writing, social media groups, and speaking with people, I’ve developed a much better appreciation for not only what we endure in life but how humor always seems to keep us from going over the edge. We are happiest when we learn to laugh at ourselves and circumstances.

People – I have wonderful people in my life now who I would not have met if I hadn’t endured what I did. Friends, acquaintances on social media, and readers of my book. I’m feel blessed with the people in my life. Even as I’ve grieved the loss of people who have moved away in their lives.

New Opportunities – Each person can identify a way that their lives has been redirected. For me, I have discovered the love of writing and hearing that my words connected with a reader. Writing is something that I can do even while in pain. Perhaps lying motionless, my mind can divert to thinking of ways to describe things in words. Maybe the pain of the moment. Maybe with thoughts of where I’d rather be and how it would feel.

Courage – I have been humbled by the common thread of courage in the Acoustic Neuroma world. I think having to face an unthinkable obstacle gives us courage. I found the courage to write and blog. Sometimes I only am able to find the courage to get out of bed, but I do. Others have faced physical challenges just to show that they can. Running, skydiving, rock climbing, and biking have been wonderful progress markers for people following treatment. Graduating from walker to cane and then just plain walking takes courage for others. Courage keeps us moving forward.

Again, I address the glass half full or half empty. I, Sally Stap, choose half full and capable of holding even more. I choose to see the world as a collection of individuals seeking joy in life and not giving up.

Myths About Acoustic Neuroma Brain Tumors

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p0047

“Oh no. You have a brain tumor. Cancer stinks.”

Yes, cancer is a terrible thing, but not all brain tumors are cancerous. Acoustic neuromas, as well as many other types, are almost always benign.

“When is your surgery?”

Treatment is not always surgery. Many patients are put into a “watch and wait” category, which means they are doing their best to continue day to day life with a mass in their brain. If there is not much growth or side effects, the tumor is left alone for years or forever.

Radiation is a second form of treatment. The tumor is radiated and dies, leaving the dead tissue inside. Radiation avoids the challenges of surgery, but can also bring the side effects of hearing loss or facial nerve damage.

There are many tumors that require surgery though, and some cannot be fully removed leaving patients at risk of regrowth. Many times a balance has to be made between retaining facial, balance, and/or hearing function with complete removal. This decision is usually made in the operating room. Doctor’s always strive to remove as much as possible.

Which leads us to the biggest myth:

“Benign is not harmful”

Benign is not malignant and that is a good thing. However, Benign does not mean that radiation or surgery was a simple in and out procedure. It doesn’t mean that you didn’t have damage to your body.

“You’re the same person, right?”

Well, actually, no. Even though an acoustic neuroma is at the cerebellum and brain stem and not in the frontal memory part of your brain, we have been changed. Maybe we have the same personality, but possibly muted. A thoughtful person in the past may now be much more appreciative. Individuals who were pain free in the past and unaware of what a migraine headache is are now learning to live with chronic pain. Perhaps without balance issues prior to treatment, that person is now careful to not turn too quickly – or may need a cane. Sometimes a person is now less tolerant of some things and more forgiving of others.

After AN diagnosis, many of us have an admittedly better lifestyle. We are more aware of our mortality and the importance of eating, sleeping, and exercising well – and consistently. We are more aware of relationships and milestones in life.

Many have shifted from living with a bundle of non-stop energy to now being fatigued by the extra work our brains have to do constantly. We learn that taking naps is a normal part of life and not something to feel guilty about. Our brains demand extra sleep to cope with pain, tinnitus, and balance challenges.

While many AN patients now have a better appreciation for life, they now battle depression – a physical reality as part of recovery. It’s a tricky combination to acknowledge and battle depression even while grateful for life itself.

Many of our friends and family take a while to recognize that the life of the party before is now unable to be in loud settings. An extroverted, life loving person is now perhaps more withdrawn in loud settings.

Not a myth – We are still here.

We are happy to see things that we may have missed given different circumstances. We want to push past our new realities and are a tenacious bunch. Everyone is changed by significant life events, and an acoustic neuroma brain tumor fits nicely into that category of “significant” – even though it’s benign. . .

FYI, here’s the definition of Benign and Malignant:

Benign Tumors

Benign tumors are typically slow-growing and rarely spread to other areas of the body. They often have well-defined borders, so surgical removal can be an effective treatment. However, the location of a benign brain tumor can have a significant impact on treatment options and be as serious and life-threatening as a malignant tumor. Benign brain tumors can be considered malignant if they are located in areas of the brain that control vital functions like breathing

Malignant Tumors

Unlike benign tumors, the cell structure of a “malignant” brain tumor is significantly different than that of “normal” brain cells. Malignant tumors tend to grow faster and can be more invasive than benign tumors.  Malignant tumors are life threatening. Sometimes malignant brain tumors are referred to as “brain cancer,” though they do not share all of the characteristics of cancer. Most notably, cancer is characterized by the ability to spread from one organ to another. It is very rare for a primary brain tumor to spread beyond the brain or spine.

Source: http://www.abta.org/brain-tumor-information/diagnosis/malignant-benign-brain-tumors.html

 

Acoustic Neuroma Life – It’s a New Year

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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!!

 

Acoustic Neuroma – Are you Coping or Adapting?

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Coping Vs. Adapting

Coping Vs. Adapting

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

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

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

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

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

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