Tag Archives: surgery recovery

Traumatic Brain Injury – Invisible Disability

1 Reply

 

IMG_6026 c

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

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

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

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

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

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

 

Polar Vortex and Acoustic Neuroma? Do I give up yet?

1 Reply

IMG_5877

I’ve always found it difficult to navigate the tricky line between giving up and pushing on. I do know and will even acknowledge there is a time for both. I learned today what a polar vortex and acoustic neuroma brain tumor have in common.

Today I had to be in Grand Rapids, about an hour north, for a doctor’s appointment. The news said to stay off the roads. Google Maps said traffic was fine. My look out the window said “so-so.” My head complained. I had to make a decision once the appropriate departure time came – after calculating travel time with extra bad weather minutes added in. Always one to push things to the limit, I headed out. 

It was blowing with spots of snow as I headed out on the north-south highway. I could see the wind gusts whirling across the road because each picked up stray snow from banks along the side of the road. I drove carefully — my hands at ten o’clock and two o’clock and the speedometer below the speed limit. I always ensured a good bit of distance between me and other cars because I know that, as in life, it isn’t always our direct action that brings accidents, drama, and unwanted events.

Suddenly, though not surprisingly, traffic stopped ahead of me. We all crept along, blinking tail-lights for those behind us as a warning to slow down. When we reached an exit, some very yellow firemen had the road blocked off with their very green emergency vehicle with red flashing lights. We were all forced to exit the highway. It was shut down.

I didn’t have a option to continue on the same path.  I also didn’t have an option to just stop and give up.  I DID have a choice to to go north or south once I was off the highway.  Should I head home or keep moving, via an alternate route, to my appointment?  I had input.  I called Kayla (hands free) and asked her to check the map. Her input?  “Mom, just go home.” I called the doctor’s office to tell them that I didn’t think I could make it. His input was that he didn’t see anything on the internet map, but I could change my appointment. It was up to me. I could ask God for His direction, but it was me who had to turn right or left. I had to turn when I reached a T in the road (or annoy a lot of cars behind me).

For once in my life, I gave up. I reluctantly, but very carefully headed south. However, I was now on a country road and found myself in a complete white-out. I turned on my emergency flashers and carefully watched ahead as well as behind for other vehicles. Even though I had acknowledged that my day had changed, the battle wasn’t over.

Eventually, I found myself out of the snow and safely home. I still wasn’t happy about relinquishing control to mother nature, but it was clear that I made the right decision when I heard that the swirling storm had closed multiple roads. I accepted getting safely home to rest up and reschedule for another day.  I am hearing whistling, violent wind and watching trees wiggle and bend even as I type this.

Acoustic Neuroma brain tumors are like that. We don’t ask for the storm that they bring. We try to keep going. Each person encounter’s their own version of the storm. Someone was in a vehicle ahead of me in the accident that closed the highway. They were “worse off than me.” Someone took the detour and kept going. They eventually reached their destination – or encountered more delays. It may have only been a bump in the road for them. Those folks were “better off than me.” However, everyone on the road today was effected by the storm. Everyone in the Acoustic Neuroma world, including family members of AN recipients, is effected by the storm.

I’d never heard of a polar vortex until this winter. I had never heard of an Acoustic Neuroma before learning that one was camped out in my head. It didn’t mean they didn’t exist. It only means that they hadn’t been drawn to my attention on my journey.  

When do we give up on finding treatment for head pain, or dry eye, or facial paralysis issues? How do we adjust to and find ourselves apologizing for our single-sided deafness in noisy settings? When do we turn around and go home for a while? When do we head out again on our life’s journey? I don’t have a precise answer – only that we have to keep moving forward at whatever pace is right for us individually.

Lessons Learned – Brain Surgery is a Unique Experience

1 Reply

scar

Each body, tumor, and outcome is unique. Each scar following surgery is different. Some are a lovely “C” circling the ear. Some leave a creative “S” trailing down into the neck. Mine is a cornered two sided triangle, which I thought was appropriate for my scientific background. Some have a scar above the ear, or none if the surgeons went into the ear directly. It’s all in the surgical approach as well as the approach of the surgeon.  I recall the residents talking about incisions and how they are the recognizable signature of surgeons.

As with our scars – or lack of scars – each aspect of our experiences are different. We like to say that we are as unique as snowflakes.

Some people skate through the experience of Acoustic Neuroma diagnosis and treatment. It is a stop on their journey rather than a radical branch in life’s road. Others are debilitated and their life is changed forever. Many of those who were changed band together in support groups to share and encourage. I have seen a unique strength and humor in each person, whether in the status of Watch-and-wait, post-radiation, or post-surgery.

Symptoms prior to an AN diagnosis vary a lot. I found out that I had a brain tumor growing in my head for ten to fifteen years. It had grown to the size of a ping pong ball, just short of 3 cm. I had no bothersome symptoms, although in hindsight I recognized signs.

For example, my facial nerve was flattened like a ribbon across the growing tumor, and I started to experience mysterious symptoms. The size of my eyes was different in pictures. Very odd, but how would one link that to a brain tumor?  I had a strange sensation on my face. My right eye was watering excessively. I felt like I was drooling on one side, but felt nothing when I would check the corner of my mouth.

Balance is a common issue that can lead to a diagnosis when one finds them self dizzy and possible falling. However, for me, the tumor grew slowly and my left side was able to take over my body’s balance issues. I have had some issues after surgery, but the doctors were surprised that I had not experienced issues prior given the tumor size.

Hearing loss and tinnitus is what brought me to the doctor, while for some it isn’t an issue. It depends on how much of the tumor is in the skull pushing on the brain and brain-stem versus how much is growing into the ear canal. I was expecting a “nothing can be done about it” diagnosis of aging, but had learned of Meniere’s Disease and had heard of issues with inner-ear bones. I was shocked to hear brain tumor.

And then there’s the journey after diagnosis and treatment. I’ll continue to address each of those areas as they each warrant a complete post.

Unique is the word of the day.  That is what brings each of our stories into color. . .

Sheepishly, she said. . .

1 Reply

Yes, I really did this. I bought my own book on Amazon. I just wanted to. To confess something even cornier, I send it to myself as a gift, with a note. Furthermore, I am NOW sharing that tidbit with the world.  I’m ok with that. . . sometimes we just need to take a minute to celebrate our victories!  Note to self:

“A gift from Sally Stap:
Enjoy your gift!  Congratulation self!”

Yippee

 

congratulations

Lesson Learned From Brain Surgery – The Power of Caring

Leave a reply

DSCN4903Lesson Learned from Brain Surgery – Never underestimate the power of caring

In the hospital following surgery, I learned the power of caring and compassion.

Even through my fog, I was keenly aware of how kind, attentive, and caring everyone was. The nurses were used to seeing such carnage and told me how I was doing at each stage of recovery. They were experienced enough to judge.  They would pause in the middle of their hectic shift to talk, encourage, or put a hand on my blanket.

Kayla always pushed me to do one more thing. Dad was there to talk or to crack a joke. They saw me, and not the horrible, ragdoll me.  Kendra called from Europe and sat on the phone with me, caring through the air waves.  My brother and mother called and encouraged me and reminded me that it was a good thing to still be alive.

Sorry to be a bit gross, but I was dizzy after having my brain jostled and was sick frequently.  All people involved with my care accepted the normalcy of handing me a barf pan or cleaning up what missed it. I can’t describe how caring and gentle that was – as strange as it sounds.

Lessons Learned From Brain Surgery – Talk

Leave a reply

The Hand

People will get sick of hearing you talk about your limitations. You will get sick of yourself if you don’t adapt and focus on what you can do instead of what you can no longer do.

Depending on your age, you may remember the phrase “talk to the hand.”  it was popular in the 1990’s and was in many television shows and movies.  It implied that one wasn’t listening so you might as well talk to the hand that is in your face to hold you at a distance.

Talking about Acoustic Neuroma experiences is a tricky topic.  While it is important to focus on positive and not negative, there is value in talking about your experience:

Camaraderie is important. Finding others who experience this is helpful.  Friend and family support is critical to our well being.

Shared understanding.  Caregivers and family need and want to understand how life has changed for us following brain surgery.  Letting them know how they can help you may be difficult but it pays off in the end.

Authenticity. We need to talk through the changes and gaps between who we were and who we are now.  We have to come to terms with the “new me.”

We are our own advocates.  While the burden of this entire experience is heavy and there is nothing we would like better than to relinquish dealing with doctors, hospitals, jobs, disability as well as the world in general – we need to find the strength to continue on and stand up when we need something.  Don’t accept being brushed off if there is an issue.

Serving others.  People who are newly diagnosed with acoustic neuromas need the support of those who have gone through the process of treatment selection, possibly treatment, and likely changes.  Being available to others reassures them that they are not alone in outcome issues.

When is it too much?  When is it time to change the subject?

When you feel yourself cycling and repeating yourself.  There is a point where we need to accept where and who we are.

When you are feeling sorry for yourself.  While some self pity is actually a good thing.  We can all feel sorry for ourselves for limited periods of time and that’s healthy.  However, we cannot let a brain tumor define us.

When we begin to focus too much on what we cannot control.  Life changes in many ways that introduce us to paths that were unexpected.  “It is what it is.”

We are dwelling too much on what we lost.  Life is a moving journey.  We would not want to stand in one place forever.  Just like we change some people in our lives over time, lose or change jobs, and live in different homes – going back is not an option.  Just like a favorite pair of jeans that rip out and we finally reluctantly discard them – we are now finding ourselves in a new place in life.  Moving forward is our only option.

We give up after a failure.  One thing that we as acoustic neuroma recipients have learned is that we will have days that are great followed by days when we can not move, or times when we lose balance, or even yet another time when we have to explain to someone that we didn’t hear them because we are deaf on “that side.”  Over time, we learn new adapting methods that ease those future “failures.”  We need to find a balance between accepting and pushing.  Only we know our bodies and can make that call.

Acoustic Neuromas are each unique.  Like snowflakes, we each have our own experiences and outcomes..

 

Under the cover of the casual smile

Leave a reply

p0118 cake kendra one

I went to a local bakery recently and greeted the woman behind the counter. She’s worked there for years, smiling casually as I’ve bought cakes for my daughter’s birthdays, rolls for family bar-b-ques, and bread for Thanksgiving.  She’s always behind the counter or arranging delicious baked goods on nearby shelves – her blond and now graying hair pulled back into a hairnet. A stark white apron is always tied around her waist and looped around her neck, splattered with that day’s rainbow colored icing pattern, 

While greeting her on this recent day, I wondered at just how little we know about people we see almost daily for years.  While I’ve perceived that she’s spent her life in the bakery icing cakes, I know that isn’t true.  I don’t know her name and she doesn’t know mine.  Since her first pleasant “hello”, I‘ve gone through many life experiences personally and professionally. 

Two daughters came into the world and grew into lovely adults.  We visited the bakery regularly, starting with a weekly family doughnut day when they were in preschool.  I now treasure occasional visits for a leisurely moment over coffee and a sweet roll when I’m lucky enough to get them for a snippet of time.

My career transitioned step to step up the corporate ladder followed by a tumble into retirement via brain tumor. The life and mind altering medical crisis of brain surgery and recovery has taken me through unimaginable changes. I now see the world and people differently.

I’ve visited that same bakery despite moves to several houses and cities.  I’ve greeted pets into my life and cried as they slipped away. People have been welcomed into my live as wonderful new friends.  I’ve seen, and cried, over friends who have transitioned out of my life as contact slowed from daily to weekly and then seldom or none as the cycle of life and friendship shifted under our feet.

Of course the lady in the bakery doesn’t know any of that.  I know nothing about her.  I wonder what she’s experienced in her life – even while icing cakes.  Perhaps between cakes she takes exotic vacations or writes romance novels.  She may have just nursed her mother through cancer.  She may have lost a child to a tragedy.  She may have an charmed life and family.  Maybe she lives alone and only interacts with people at work.

Do you ever wonder what lies just under the covers of a smile?  Let’s be kind to one another. Let’s care. . .

Aftermath of Brain Surgery – Single-Sided Deafness

1 Reply

 ear ear 3

It LOOKS normal enough. . .

…wow – this turned into a LONG post…

Single sided deafness (SSD), losing all hearing in one ear while still having normal hearing in the other, is a bit odd. At first, I didn’t notice it or even believe it.  But then again, I had just come out of brain surgery, pain was stunning, and my head was wrapped in gauze.  Hearing wasn’t at the top of the list of things to worry about.

When I did start to focus on it, there still didn’t seem to be any difference.  I was in a private hospital room and could hear anything that was said in the room.  No problem, I thought – I’ve got this.

Then I started to notice little things.  If I laid my head on my pillow with my good ear down, it was very quiet except for the sound of my heartbeat.  That was actually kind of a good thing.  I always sleep great with my good ear down. Noisy hotel room? No problem – left ear to pillow!

As I recovered and found myself in noisy settings, I quickly learned what the issues are. . .

– I have to mute the television if I want to talk to someone in the room.

– If I’m driving, it’s a challenge to hear my passenger talking.  My good ear is toward the window and road noise, my deaf ear is pointed right at the talker.  Listening to the radio and talking in the car isn’t even an option if I want to understand anything.

– When talking on the phone, I have no idea what someone next to me is saying on the side, like “order fried rice too”, or “tell her hello.”

– In a store one day, I heard someone far away asking someone if they needed help.  Then I realized that it was a sales person standing right next to me talking into my deaf ear.

– Think about this a bit but When people hug hello or goodbye, it’s generally with their head to the right of my head.  Whispering something into my ear, like “Good to see you”, or “Let’s do it again” is lost on me.  My nephew asked once to be reminded of my deaf side so he would be able to whisper his Christmas wish into the ear that would hear it.

– At a restaurant, I’ve learned that background noise is an issue.  I can’t hear the server taking my order but I can tell you that the person on the other side of the restaurant was talking about their weekend. The brain loses its ability to differentiate background and foreground noise like it does with two sided hearing.  Not sure why.

For awhile, I decided to barrel past it.  When servers asked me a question I didn’t hear, I pretended that I knew what he/she was asking. However, I learned that it didn’t really work because I would answer the wrong question, causing more awkwardness than if I just ask for a repeat.

Adaptations: So, it is what it is, right?  So I’ve adapted in some of the following ways:

– I let someone else step up to a hostess in a restaurant to ask for a table.

– My family and friends know, so when in restaurants or stores they simply answer the question for me.  It’s surprising how many times I don’t even know I am being spoken to.  I’m ok with help and appreciate it.

– If ordering Chinese or pizza, I hand the phone to someone else, as I can’t hear anything but the phone conversation. Then I say things to them on the side because I know they can hear me. (tee hee)

– I’ve learned to just tell people, “Sorry, I’m deaf on that side.  Could you repeat what you said?”  It generates some alarm in their eyes.  They are embarrassed or apologetic.  Sometimes I’m not sure if it’s for me or them.  I am no longer awkward about it.  I just laugh it off and have learned that it’s ok.

I realize that in some ways, being SSD has allowed me to be less of a control freak, and let others handle little things that I don’t really need to!  Learning to let go, laugh a bit, and not allow it to be MY awkward issue has helped immensely.

Tinnitus with Single-Sided Deafness

2 Replies

ssd tinnitusAfter surgery to remove my acoustic neuroma brain tumor, I learned that the surgeons needed to remove my auditory nerve.  I also learned, as my doctors had predicted, that I still had tinnitus, or ringing in the ears.  It’s always there, but I have learned to ignore it – unless, like right now, I’m trying to describe it 🙂

Walking on the beach is the only time that I “kind of” don’t hear it because of the waves.  Walking the beach and getting a short break from the ringing is always soothing to me.

Many people are confused by tinnitus – in general.  And those of us who are single sided deaf finding it even more puzzling.   In trying to find answers, I’ve done some digging around and asking.  It isn’t really understood, but one description made sense to me.  The sound is in the brain — not in the ear or nerve itself.  The brain, struggling to hear, has turned up the volume.  Being deaf in one ear confuses the brain because there is nothing to hear, so it turns it up again.  Thus, louder ringing than prior to surgery.

Tinnitus is frustrating, because like headaches, you can’t always describe it OR prove its existence.  It has different sounds for each individual.  For me, it varies in volume throughout the day.  Noisy settings will cause the volume to increase for hours afterward.  It’s louder in the morning right after waking.  And I have a change in pitch if I move my eye in any direction.

Tinnitus is not currently curable.  Research is looking, and there are some therapies available that condition your brain to better cope with it.  I have not pursued anything at this point.

I recently learned of the following website, which has recordings of different types of tinnitus.  Mine is a combination of screeching and tea kettle sounds.  You may find it interesting to find your tinnitus sound:

http://www.ata.org/sounds-of-tinnitus

Caregiver Tip # 13 – Listen A Lot

Leave a reply

PD_0064LISTEN A LOT

While this sounds obvious, it is worth pondering a bit.  We are all driven to fix things and want to fix broken thing in the lives of our loved ones.

However, some things can’t be changed.  Patients – who were simply “people” the day before – need to talk through what they’re experiencing.  Brain surgery is something that leaves one feeling unique and isolated.  Unique because it is not common to have anyone in your immediate circle of friends and family who have had brain surgery.  Isolated because the experience puts one’s life into a tailspin.  Whether a short and uneventful tailspin or an unending circling of the drain, one’s life is effected forever.

Listening, without trying to solve anything, is a skill we can all work on.  Being listened to is appreciated in times of high stress.  And then, when you feel that you have listened thoughtfully and deliberately to a point where the patient is repeating – distract by finding something “normal” that you can do together.

The word “Speculate” became a joke in my family.  After a shocking diagnosis, we speculated nonstop about what treatment options would be available to me.  Once surgery was determined to be my only option, we speculated until the day of surgery about what that experience would be like, what the outcome would be, and anything we could think of.  Speculation was the word that we would throw out to each other when it was time to take a break and live or talk about something else.  The combination of speculative talk and continuing to live life helped me get through a challenging period in my life.