Tag Archives: brain tumor

SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

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.

Brains That Share Space With Brain Tumors

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So many reasons to live, so we do. So many reasons to give up, but we don’t. Sharing space in your head with a brain tumor – even if it’s been removed – changes who we are.

Getting the diagnosis that there is an alien inside what we perceived as an solid body part that’s already filled to capacity begins the change. Living through treatment that penetrates that impenetrable cranium tests our will to live in ways that we never imagined. Living through treatment is what is implied – living and not dying.

Recovering from treatment tests our longevity and patience. There are no quick answers. Healing may be stunted by limitations of our bodies to regenerate parts that were not meant to regenerate. Parts that were slowly damaged, unknown to us, by that selfish alien. A tumor that doesn’t care what it pushes around or damages to find space as it grows – until it demands to be recognized.

Fatigue can be overwhelming. Our minds are foggy until the sleep that our brains demand is paid in ransom – regardless of how we wanted to spend a day. Fatigue helps us prioritize and give effort to only what is important.

Depression can come – and go – in an instant. As suddenly as a balloon flying high and free and then popped, deflated and fallen to earth. The culprit could be a new diagnosis, a new drug that doesn’t work, or a hope that is dashed. When depression lets up, even for a short time, joy is more joyful and fun is more fun.

Balance is a challenge. While the opposite side typically takes over, it requires more time to catch our bodies when tilted or turned. Balance teaches us to know our body and be deliberate in our movements.

Pain may be constant, unrelenting. Not a welcome giggly friend, but a constant companion. The lack of pain can provide a gleeful relief that is recognized and savored.

Single-sided deafness is puzzling. How can noisy settings be louder when only one ear works? Single sided deafness – good ear down – shuts out the world for a period of time leaving only the frustrating yet fascinating sounds of tinnitus.

Facial paralysis is something we learn is a journey, not a point in time when it ends. As we learn to accept our inability to express ourselves, our faces either stay flaccid or morph and feel pain. Facial paralysis is something that teaches us the value of relationships and the value of what’s inside.

With the miracles of today’s medical science, it slowly dawns on us that while we look for a fix, the medical world can only search for a band aid to cover ongoing, long-term issues. With the miracles of today’s medical science, we recognize we are alive and survived.

We are like leaves. Some of us are strong and survive growing, blowing, and falling from trees. Some even stay pristine as fall leaves being walked on. We absorb whatever life throws at us. Others are brittle and crumble despite all attempts to hang on. We don’t know what type of leaf we are until we fall or get blown down.

Life is life and we cherish it. Each day when we touch nature or another person emotionally, or with a big hug – it is another day we live, love, and breathe. Even as brains share space with the unknown, our hearts share living.

 

ANAwareness – Acoustic Neuroma – Laughter

sallynancy

 

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

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 Neuromas and New Beginnings

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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“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

 

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?

Audio Book Challenge on Facebook

Smiling Again Audio

In recognition of having my audio book released, I thought I’d start a challenge. When I get to 500 likes on my Facebook Author page, https://www.facebook.com/Sallystapauthor I will have a drawing to give away five audio books through audible.com. If you want to be included, please LIKE my Facebook page, or comment on a post about the challenge. Please help build my likes to the next milestone by sharing the page with your friends on your timeline, or retweeting.

The sooner I get to 500, the sooner I’ll be sending out audiobooks to the winners!!

Thank you to everyone who has been supportive of my blog. You keep me writing!