Tag Archives: acoustic neuroma experience

Acoustic Neuroma – How I Face My Face

I’m hard on myself, always pushing for progress. Critical of myself and always falling short of my own expectations. Not acknowledging that perhaps some things are beyond my control. One simple example being facial paralysis. I consistently fuss over of how much I have not healed – or ever will – rather than how far I’ve come.

Facial paralysis is hard. The first few months were the worst. It’s hard to watch nothing happen. It’s painful to wait for a healing rate of 1 mm per day. I was told that it would be at least seven to eight months before I could expect any healing and much longer before I’d know my “final” healing rate. At the beginning of that seven months it could have been twenty years.

However, I was given hope. I know that many people have to swallow the tough news that their facial nerve was completely severed and there will be no healing. There are possible surgical options in those cases, but that is a different path than I traveled.

Since the initial trauma during brain surgery, I’ve had a lot of improvement. People tell me they can’t tell, which is an emotional dilemma of its own. I fully accept their perception and appreciate their encouragement but am screaming internally that it is NOT ME! I wonder if they are truly looking at my face because it still looks incredibly abnormal to me. It’s such a contrast to process the difference between what I see in the mirror versus what I’m told by others. I recognize that they are seeing a face in motion that frequently smiles where I am studying a motionless direct glare of disappointment. I do appreciate that each person in my life does not stare at my face in a medical analysis mode.

Regardless of my frustration, I see improvement if I consistently focus on small changes. Improvement that some people would dance in the streets with delight about – and others see and are reminded of their more advanced outcome.

I have learned more about facial paralysis than I even thought possible. I am not a medical professional but as a person living it, I’d like to share a bit of what I’ve learned. I am just a girl, standing in front of a mirror, wishing I had my old smile back. (yes, that was a corny reword from the movie Notting Hill but I think you’ll get it and maybe smile a bit.)

First, while you are waiting for the facial nerve to heal from the brain at, prior to healing showing, here are some things that may be helpful:

– Regular use of a heating pad on the effected side of your face on a daily basis helps blood flowing for optimal healing.
– Gently brushing your cheeks with your fingers reminds your brain that your face is still there.

As healing begins what I didn’t know is that my muscles seized as the nerve healed. So, I had the characteristic look of a raised lip – my cheek muscles were pulling up as they seized. Through facial therapy, I learned that there was a lot of stretching that would help.

However, my fingers got tired and I couldn’t stretch things well inside my mouth. So, I experimented a bit and discovered the value of using a baby teether. This tool helped me significantly. (If traveling without, a spoon will do if you are gentle with yourself.)

In hindsight, I should have been stretching immediately after surgery. I know that many before and after me have found their own methods, but here’s my “wish” list:

1 – trail fingers on cheek
2 – pull cheeks together with mouth open
3 – push bottom of nose up. (like a pig – very attractive)
4 – Press between eye and nose
5 – massage cheek vertically and horizontally.
6 – pinch along jawline

I was told somewhere that a stretch doesn’t count if not held for 30 seconds and have strived to honor that minimum. I believe it does help your body parts relax and release into the stretch.
If a spot on my face hurts I hold that position until it stops hurting. I don’t know how to describe this so let me know if you’ve experienced it. After holding a painful spot (spasm) there is almost an instant – very short – where it hurts amore than then releases. It’s almost like the muscle is making one last attempt to hang on before giving up.

If you’ve had a Charlie horse – or cramp – in your leg, you know it hurts. Did you know that a facial muscle spasm is the same? Your leg muscles are connected to bone, so the pain is immediate and intense. You immediately stand to release it and it typically releases and feels better.

Facial muscles are not attached to bone, so we don’t have the same intense pain. The down side is that we then aren’t aware of the cramping and think its paralysis. Since you can’t stand to release,  you must turn to other methods.

I continue to work with my face. To me, it still looks strange. Partly because I’m not 21 anymore (grin). But if I follow my routine, it does make a difference in looks and comfort.

I know I’m not alone in this journey…

Pictures that may help are below.  PLEASE NOTE that if your face is really tight you will say this is impossible. However, with continued stretching, you will be able to.

 

 

 

 

 

This is “the lip” before stretching

This is “the lip” after stretching. I am able to close my lips.

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.

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

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

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.

 

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

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

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

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

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

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

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

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

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

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

Acoustic 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