Tag Archives: brain surgery

The Good Side of Single Sided Hearing (or SSD)

glass half full

Glass Half Full

Single Sided Deaf or Single Sided Hearing? Let’s look at the good side of this condition many of us live with. Today, I choose the glass half full. I am fortunate enough to have great people in my life who are with me on this journey. I really appreciate each and every one of them. They have helped me laugh even as I sigh, and that has helped me seek joy even in life changes that I didn’t choose.  One of those is hearing in only one ear:

  • Even though I miss what someone just said on my deaf side, I may hear some good gossip from across the room on the good side (the ability to distinguish the source or distance of sounds is gone)
  • I “really” see the person on my deaf side because I turn my head almost 180 degrees to hear them, positioning my baby blues to gaze directly into theirs.
  • I’ve trained my family and friends to walk on the proper side, which sometimes turns into a funny dance until everyone is properly aligned. Sometimes they figure it out themselves when I don’t respond to a question and accept their responsibility to reposition. “Oh yea. . .”
  • I make people feel special at dinner by sitting with them on my good side. Or people wait for me to choose where I sit first, allowing me to determine the best spot for hearing.
  • I don’t have to fight the line to put my name on a restaurant waiting list because my friends and family do it while I quietly relinquish control and take a seat in the waiting zone.
  • I could get a cool tattoo with an interesting graphic designed to indicate my deaf side (I haven’t chosen to do this but many have)
  • When talking on the phone, the caller has my full attention. Of course, that is unfortunate for anyone on the bad side saying, unheard, “Have them pick up pizza on the way.”
  • Multitasking– trying to perform tasks while listening is difficult so I tend to be very focused on one or the other. I have an excuse for not knitting.
  • I’ve become accustomed to reading television using closed captioning, thereby not missing what people are saying in unfamiliar accents or low, menacing voices. I can sit back and enjoy popcorn event though crunching drowns out voices.
  • I’ve learned that “head shadowing” is the term for what causes many things said on the side of the deaf ear to be lost completely or sound like they are coming from another room. Not to be technical but low-frequency, long-wavelength sounds bend around a person’s head and are easier to hear. High-frequency, short-wavelength sounds are not as elastic and do not bend around to the good ear. The frequencies of speech vary, causing patchiness in what is heard.  I just tell people, “Let me know if I’m supposed to hear anything.”  This allows me to not worry about what I might be missing.  I can’t be held responsible for what I don’t hear, right? (wink)
  • Oh, and the obvious. . . Sleeping is awesome when I put my good ear down on the pillow and sleep like a baby.

Acoustic Neuromas – Alive, but. . .


Acoustic Neuroma survivors are just that. We have survived. We are alive. We are grateful to have days and moments with our families that we would not have had without intervention.

I was able to walk my daughter down the aisle at her wedding. I have been able to hug, kiss, and adore my grandsons who I might not have ever met. I’ve loved every minute with family that is spent laughing, sharing, or even crying. I’ve truly appreciated the friends in my life who I can travel, play computer games, or have lunch with. I have been enriched by meeting people in my life who I wouldn’t have meet prior to a left turn in life caused by brain surgery.

Other AN survivors would say the same thing. We know that life is a gift not to be wasted. We know that memories are being made that might not have been.

But. . .

It’s OK to have a down day. Like any loss in life, the absence of something is felt in our changed hearts. So, it’s OK when we have a day to say “Yikes, just let me exhale and feel sorry for just a minute.” It’s good to adapt to life’s changes; even as it’s OK to feel disappointment. It takes energy to move forward, which means we have to tuck into ourselves at times to reach our spiritual reserves.

Acoustic Neuroma brain tumors leave each with unique check marks on a menu of outcomes or ongoing issues:

For those impacted by facial paralysis, full or partial, we miss our smiles. Faces are the first thing that people see. We don’t think we’re adequately expressing what we’re feeling when part of our face is frozen, experiencing Synkinesis, or tied up in knots. Yes, I reread the blog post that I myself wrote about smiling and pictures after squirming in front of a camera recently for friends who sincerely want me in their memories. Those around us see into the moment, not the expression captured in a picture. We have to continually remind ourselves of that.

For those with trigeminal nerve damage it means a loss of sensation on the face; or a change in the taste of food.

For those with single sided deafness – yes, we are also single sided hearing. But we miss being able to discern the source of sound. We feel apologetic to anyone sitting on the deaf side in a noisy restaurant after we’ve said “what?” for the tenth time. We feel bad for people who think we were indifferent when, actually, we didn’t even know we were being talked to.

For those experiencing nonstop tinnitus, we miss silence. There’s nothing like the silence of a summer night dotted with crickets chirping and frog croaking. We remember that sound of nothing, but live with ringing in our ears which varying from annoying to downright irritating.

For those with head pain – Post-craniotomy head pain is not merely a headache. Finding energy to compartmentalize pain and continue with life can be exhausting. Medicating to the point of less pain leaves us exhausted or downright unconscious.

For those with dizziness or balance issues – We miss window shopping as we can’t walk forward looking sideways anymore. We find ourselves in an awkward pile on the floor more often than in the past. We laugh it off, but it can be scary.

Recovery is an ongoing process with ups and downs. For anyone for whom those swings have not stopped, support and encouragement from other ANers in support groups is priceless. Acceptance and love from people in our lives is immeasurable. We delight in normalcy. Thank you to the people in our lives for listening. Not trying to fix the unfix-able but for providing constancy. Thank you for letting us feel sorry for ourselves on occasion and then pushing us to see the good in our lives. Thank you for reaching back as we reach out.

Fear and Acoustic Neuroma Brain Tumors



Fear is a huge four letter word. Anyone going through a medical crisis experiences fear. It fills our minds when we get that first hint that something is wrong. We fear pain, death, and change.

Fear triggers our autonomic nervous system – what controls our bodies below the level of consciousness. This effects our heart rate, breathing, digestion and even perspiration. Autonomic functions are involuntary but work with voluntary control in the somatic nervous system. Wow. That sounded technical.

What it means is that we are not fully in control of our reactions. So when we feel scared, it’s ok. For some that means dry humor. For others it means prayer and meditation. For some it means curling up in a ball and for others it’s loud and screaming. As much as we appreciate the support of the people in our lives, only we will experience what we live and feel.

Fear is something that Acoustic Neuroma survivors know the meaning and feel of. I sure felt it. At first it was rather abstract and distant. I knew something was going on in my head and my mind raced between “it will be nothing” and “I’m going to die.”   That is a very wide range and felt dizzying.

Each step of seeking answers to my symptoms required me to expose more data to my family. There was a point when I said for the first time out loud that I might have a brain tumor. I felt almost silly for worrying the people in my life but could no longer keep it contained in my imagination.

When I was told “You have a brain tumor”, fear took over my body such that I spent all my energy trying to control myself. I tried to not shake, or cry, or stammer, but it happened. 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 my 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.

Sitting on a gurney in a hospital gown brought restlessness. I prayed even as I looked around the surgery prep room and watched other patients being rolled to their destinies. 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 fear. The inability to escape pain brought fear that I had no energy to acknowledge. Each unpredictable step of recovery giving no definitive answers to the future was terrifying. 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.


Lessons Learned – The Power of Pet Therapy

Paulo and Gina

Paulo and Gina

Warning – this one is an emotional, tearful tribute (and necessarily long)

If you’ve had a pet during a significant event in your life, you understand how they can be an integral part of healing and recovery. I’ve always had animals in my life. With a shorter life-span than us, we learn the importance of loving but also moving on. I’ve experienced the incredible bond that one can have with animals. My pets have known me, sensed needs, provided comfort, and demanded at times that I think about the simplicity of life through their silly games and nonstop love of play.

At the time of my brain tumor diagnosis, I had two Italian Greyhounds (the toy versions of the big racers) and one half-Siamese calico cat named Gabby. The dogs, Gina and Paulo, were always goofy and clumsy as they ran around the house and jumped all over me regardless of where I was sitting or standing. They ran at incredible speeds through the backyard and stopped, panting and happy. They had a tendency to take over the bed and at times I would wake to find myself clinging to the edge of the bed as they stretched out. Gabby tolerated the rest of us living in her house and would run down the hall howling if she was offended by anything.

When I came home from brain surgery, I had very different pets. I’ve never experienced the love, camaraderie, and the responsibility of pets as much as I did when I was recovering. When I came home, they were happy to lay for hours on my bed, keeping me company. With NO demands. They intuitively knew that something was very wrong with their person. (We do belong to them as much as they to us.)

I was in raw pain and apprehensive of their usual zealous natures, so we kept them away from my bed the first night. It turns out that I had nothing to fear. They knew. When they were allowed into my bedroom, they slowly hopped on the bed and did belly crawls to my side. There they laid for hours and hours. I found great comfort in petting them and having their company. Paulo, the goofier of the two, became the most protective, warily eyeing anyone who entered the room and refusing to leave my side.

As I started to get up and around, they gave me responsibility. It was hard to do nothing more than exist in pain after having a very busy lifestyle. I couldn’t leave the house without assistance from family, a cane, and a driver. However, at home my pets forced me to move and to care for them. They helped to establish a routine. They made me laugh. They made me feel loved despite my losses. They sensed my pain and changed energy with their close companionship.

As I healed and became more independent they once again demanded walks in the woods where they sniffed every scent on the ground as I lifted my head to inhale air that was crisp with pine and wood. We would take breaks and I would watch their attentive faces and alert ears. I saw pleasure on their faces that left me no choice but to smile, knowing that things would be OK as long as there was one more tree to mark. They made my new life meaningful and manageable. That was almost six years ago.

A couple years ago, I had to say goodbye to Paulo because of epilepsy after one too many seizures. Last week I had to say goodbye to Gina as kidney disease once again gave me no choice. The house feels empty as I look at Gabby and say, “Well, Gabrielle, it’s just you and me now.”  She’s clearly mourning the loss with me by sticking closer to my side than usual.

I can say thank you for the companionship that I had through the most challenging time of my life. I’m honored to know that when the time came for their last heartbeat, I was there, standing strong for them as they had for me. I wondered at the fine line between life and death as I kissed their still bodies one last time and walked away with a heart full of memories.




Facial Paralysis and Pictures


PD_0005 c

Pictures capture the memories of life – both significant and small. For Acoustic Neuroma survivors, it also causes serious stress and angst. We WANT to be in pictures, people in our lives encourage us, we cooperate, and are then frequently horrified by the results.

First, the facts.

Smiling intentionally and smiling spontaneously are two different things. How often do you walk around with a smile like in pictures? Our cheeks would ache and we would appear insincere. We move our mouths normally all day with minimal movement, and then say “CHEESE” with huge movement when a camera appears. So if you think about it, you’ll start to notice the distinct change in others’ faces at that moment that the camera appears.

The mechanics of smiling

Our Eyes – We smile with our eyes as much, or even more than our mouths. Technically, the twinkle in the eyes of someone who is genuinely happy is caused by tear layer being compressed with slightly squinted eyes, which causes more reflection in the thicker layer of fluid.

Our Cheeks – We smile with our cheeks. A spontaneous smile originates when our cheeks lift our lips.

What?  – There’s two ways to smile if you really think about it. Try it in front of a mirror. If we force a smile, it is using the muscles around our mouth. Those muscles are frequently suffering from a combination of paralysis and synkinesis following brain surgery. However, If we try to ignore our mouths and think happy thoughts and let our eyes smile, our cheeks pull up our lips. Subtle, but worth thinking about.

When the pictures come – We are accustomed to seeing ourselves in a mirror. Pictures show us as others see us, which is different. We might think we look okay in a mirror only to be horrified when we see a picture. The more symmetrical one’s face is, the more familiar their face will be in pictures. Since paralysis and synkinesis causes asymmetry, we then look very different to ourselves in a picture. So, when the pictures come, or someone hands you their camera phone, hold it up to a mirror and look at it in the mirror. You might be surprised. It doesn’t change the picture, but it lets you see yourself in the way that you are accustomed to.

Positioning – Huge life moments happen that we want to remember, but we cringe about having our picture taken.  That’s where positioning comes in. In a formal picture setting, quietly mention to the photographer that you have a legitimate issue with your face and could they keep that in mind when positioning. I did that at my daughter’s wedding and was very pleased with the outcome. I’m turned so that the good side of my smile shows, and the “bad” side is turned away from the camera.

kendra sally

Kendra’s wedding

If you are in a candid setting, don’t lose the moment! Turn your face a bit to the side, or hold something in front of your bad side. I have a picture with my grandson where he is holding a balloon. You can only see the top half of his face and one side of mine. It is very cute with us peeking around the balloon. I’ve held a wine glass up (cheers) to cover half my face or the corner of my mouth.  When my face was fully paralyzed on the right side, I turned totally sideways in front of the ocean. You see my profile with wind blowing my hair over the good side of my face. I love the picture. For me, it captures my pleasure at surviving, walking, and breathing ocean air. Call it art if you don’t consider it to be a portrait. . .


Ocean Air and Wind

Smile small – I hate it when I pose for a picture and someone I don’t know says “smile bigger!” I just say, “This is all you’re going to get.” A small, pleasant smile can minimize the two sides and look quite nice.

Makeup – Here’s a bonus for the ladies: A couple of things that can be done to help symmetry is to part our hair so that it draws the eye to the “normal” side of our face. Contrary to what you would think, you want the part of your hair on the paralysis side. Also, if you put lower eyeliner above the lashes on your larger looking eye, and under the lashes on the smaller looking eye, they will look better. On your lips, put lipstick on, but then add a touch of shiny gloss on the skinnier side of your upper lip. That will cause a slight optical illusion.

SO. . .

Even with these tips, there are times when you need to forget facial issues and “just” smile, let a picture be taken, and embrace that we are unique. It’s okay.  There’s much more to us than our faces.  There are many ways to show love, pleasure, or acceptance beyond a facial expression.


Smiling and Facial paralysis

Asymmetrical flower

Asymmetrical flower

One of the things that people with full or partial facial paralysis will tell you is how much they miss their smile.  I had the same reaction, and still do even though much of my face has movement again.  It just isn’t the same – and that’s by factoring in parts that didn’t regain movement and Synkinesis (explained below). By going to facial therapy every few months for the past four years, I have learned some interesting things that are helpful. First and foremost – A smile is not just a smile.

Our Eyes – We smile with our eyes as much, or even more than our mouths. Technically, the twinkle in the eyes of someone who is genuinely happy is caused by tear layer being compressed with slightly squinted eyes, which causes more reflection in the thicker layer of fluid.

Our Cheeks – We smile with our cheeks.  If you hold a paper in front of your mouth and smile at someone, they will know without seeing your lips if you are smiling or frowning.

Symmetry – Beauty according to the modeling world and scientists of natural selection perceive a symmetrical face to be ideal.  However if you start to study faces, few are symmetrical.  We love people in our lives regardless of their natural symmetry.  We love actors in movies sometimes because of asymmetry — Harrison Ford being one example. Brian Williams is a news anchor with asymmetry. I, personally, watch NBC nightly news because of his wit mixed in with the drama of the day, not because of his symmetry or asymmetry.

So we’re asymmetrical.  Okay. Acoustic Neuroma survivors even more so than we were prior to brain surgery.  Some parts don’t move and some move wrong.  That’s because of a couple things that I will explain in such simple English that doctors and therapists will groan (and be reminded that I’m not a doctor):

Nerve Healing – Nerves heal at the rate of about an inch a month.  BUT WAIT, there’s more! What I didn’t get is that the nerve doesn’t just heal at the little section that was damaged, but from that point out to the end.  Take me for example – my facial nerve was damaged at the time of surgery.  Obviously that damage was inside my skull.  The healing required for my mouth to start smiling again was about 6-7 inches.  So, the corner of my mouth turned up at seven months, which was about right. Some nerve fibers way out at the end of several branches will just never get movement back.  Because of the distance, the forehead almost never comes back, I have been told.  (Some facial nerves are severed and never come back, for which there are surgeries available)

Synkinesis – I was told by one doctor that once the nerve heals, it heals.  My face would just start moving again.  What he didn’t mention was Synkinesis.  When the nerve is damaged, that means that some fibers within the nerve were broken.  If you can image a rope being frayed, and then (use your imagination) it becoming whole again, it is easy to see that not all fibers would heal to their previous partner.  That is Synkinesis.  The improper movement of the face due to improper healing.  For instance, when I try to raise my right eyebrow, it just sits there.  However, when I do certain other movements with my face, it lifts like a little soldier.  Gee, where were you when I asked you to raise?  When I drink through a straw or pucker, my eye closes or squints.  Synkinesis is determined by the amount of damage compounded with the length of time a nerve is paralyzed.

Neuromuscular facial retraining – Once the face starts moving again, it becomes locked up because our brains were trying so hard for so long to move those muscles that as soon as they healed, they froze.  So we often think that movement hasn’t returned when it has.  Facial massage, focusing on painful knots that we feel, will loosen those muscles and make us more comfortable.  Retraining, which I haven’t mastered, is possible by making tiny movements and stopping when it stops matching the movement on the normal side.  With time, our brains can remember how to better move. (this should be done with a trained therapist)

There is no magic bullet, and no point when many of our faces will ever be normal again.  However, if we understand the mechanics, we’ll understand what our bodies are doing.  Knowledge is power.

My next post will be about Pictures and Facial Paralysis. . .

Acoustic Neuroma – Pay to Play


The climb is worth the view. . .

For acoustic neuroma survivors, we frequently have to pay a price for participating in activities or being more active than usual. What can be a fun, exciting event for our friends and family frequently takes a toll on AN survivors. Our balance systems are compromised, and for many, our heads still hurt. Additionally, drugs are layered onto our systems to relieve head pain, causing fatigue or less mental clarity. Although acoustic neuroma brain tumors are benign, and we lived, craniotomies do cause the head to be compromised.

We participate though because we do want to!  We want to spend time with friends and family. There are trips that we want to go on. We want to live life because we have learned to appreciate the value of it!

I thought might be helpful to explain the effect of a loud gathering on our battered brains – not as a complaint but to put you in our shoes for a moment (or maybe I should say in our heads). Especially as we are going into a Holiday weekend in the US. (Memorial Day)

Our senses are assaulted by noise that is considered normal to the rest of the world (and to us prior to surgery). Frankly, this can be exhausting. We have to plan appropriately to make sure we are adequately rested up prior to an event. After the event, we sometimes need up to a day of rest to get our heads to settle back down.

Our hearing, if single-sided deaf, challenges our brains to work overtime to sort out where noise is coming from or to focus on someone in front of us when our brains randomly pick a voice from across the room to hear instead. If you are on our deaf side and say something, we might unintentionally ignore you. Or do what I call “look like we’re going in for a kiss.”  Let me explain. Because we have to turn our head so far around to get the correct ear positioned to hear you, it puts our face directly, and oddly, into yours. No sideways chatter for us – unless you’re on the correct side.

Our tinnitus gets louder in social settings. Typically it roars after the event for up to a day after we return to a quiet location.

Our dry eyes tend to get worse through the day. So by the time evening comes, you will probably see us putting eye drops in frequently, which still might not be adequate for our comfort. We may close our eyes during a concert – yes, to appreciate the music – but also to give our eye a rest.

Talking, even for a typical chatterbox, can become awkward in a noisy setting. We want to talk to you but our brain might be on overload and have difficulty concentrating on the topic at hand.

And then there’s balance. If you put us in a room where we have to stand around balancing a plate of food, a glass with beverage we may suddenly find ourselves weaving. Unsteady despite the fact that we typically drink little to no alcohol due to drugs we may be on, our compromised systems, or the sad fact that alcohol intensifies headaches.

So, if you want to have a great time with someone who has had an Acoustic Neuroma brain tumor, look for us over in the quietest corner, sitting down, and talking to one individual whose lips we may be partially reading.

Of course, the final challenge is group pictures for those of us who have facial paralysis – either full or partial. Please don’t ask us to smile bigger. Accept if we want to be turned a certain way that accentuates the side that actually smiles. A brief explanation to the photographer helps, but sometimes we just want to blend in and NOT talk about it.

Further, if you want to talk to us the next day about what a great party it was?  You can find us at home in bed. Oh, and please, don’t be offended if we went home early. Moments with loved ones are cherished.

Radio Interview Friday!


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

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


Press Release:


Wish me luck. . . .