Tag Archives: single-sided deafness

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.

The Holidays – Two Sides of a Coin

half and half

Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

  • I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
  • I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
  • I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
  • I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
  • I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
  • I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
  • I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
  • I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
  • I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
  • I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

The Good Side of Single Sided Hearing (or SSD)

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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.

Traumatic Brain Injury – Invisible Disability

 

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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?

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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

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. . .

Aftermath of Brain Surgery – Single-Sided Deafness

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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

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