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Acoustic Neuroma – Depression and Timelines

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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 – Pay to Play

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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.

Caregiver Tip – Time is the Ultimate Gift

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I love spending time with my friends and family.  Yesterday, I spent time with Kayla and smiled after leaving.  I talked to Kendra on the phone and felt warm and connected even though she’s across the ocean living in Europe.  Sometimes after being with the people in my life I don’t recall the conversation, but always remember the time spent.  It gives me strength.

One of my friends laughs most at a line in my book where I describe my brother as “giddy.”  He normally isn’t, but was after a short phone call to me in the hospital right after my brain surgery.  I could hear in his voice that he was relieved that his sister was going to be OK.  It was short phone call, but encouraging and meaningful.  I found strength in his uncharacteristic giddiness.

I recall my friends visiting me right after getting home.  They were each there for only a few minutes, but they were moments – not just time.  Margie helped me feel understood in my terror.  Nancy pushed me forward, “You’ll be fine” in a confident tone.  Time given as a gift to me was like fuel to my spirit, building strength to move forward.

As a caregiver, the ultimate gift is time.  Just sitting with someone is very important and helpful.  When someone is facing a medical crisis or recovery, you are most likely not going to have an answer or solution.  There is a time to do research to help educate and evaluate treatment options, but there is also a time when you just need to sit. Together.

God tells us to be still at times and loves to have us spend quiet time listening to Him. Speaking to Him. Being together.  Pulling strength from that relationship.

We only have so much time in our day, our weeks, and ultimately our lives.  Sharing it with others is the ultimate gift.

Brain Surgery – Recovery takes time

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Yes, recovery from brain surgery is an uphill climb that’s exhausting, but it’s worth the trip. For those of us who have experienced having a brain tumor, life is precious. Each life event that we experience post-treatment is a gift. When I found out I had a brain tumor, it wasn’t my past that passed before my eyes but my future. Would I be here for my daughter’s wedding. Would I meet my grandchildren?

Our brains are vulnerable. Our brains map who we are. Having it invaded is very personal. Recovery is a steep climb for every one – a hike up a hill for some and a mountain climb for others. All we can do is take it a day at a time, experiencing progress in some areas and setbacks in others.

There are incredible support systems with people who are happy to share information. While our families step in to provide immeasurable support, we also benefit from one another. There are amazing communities of people in local support groups, on Facebook, and in forums that have a unique sense of humor and compassion. We have learned to laugh at life even as we are in pain. We can make jokes about the awkwardness of not hearing many things. We share tips for keeping a dry eye healthy or a compromised balance system functioning.

What I learned as I’ve healed is that, as in anything, the future “you” is still undefined. Recovery takes time and patience. We are in a society that expects instant results. I expect instant results. Instead I’ve frequently felt like a human pin cushion. I’ve had more needles in me in the past five years than a porcupine has twills. Through it all though, I’ve connected with family and friends in ways that I otherwise would not have.

It is my journey of LIFE, but I’ve got great company.

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.

Lesson Learned From Brain Surgery – The Power of Caring

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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

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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..

 

Tinnitus with Single-Sided Deafness

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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