Yes, really, sometimes we need to enjoy the view from where we are!!
First, I need to make it very clear that only a medical professional can diagnose an Acoustic Neuroma brain tumor with the assistance of an MRI or other imaging equipment. This is a list of symptoms that one may or may not have to indicate the presence of a tumor lurking in your gray matter.
Most people have never heard of an acoustic neuroma. Even when I suspected that there was a tumor growing in my head, doing a search on “brain tumor” was way too broad and overwhelming. It wasn’t until after my MRI that I learned the name and could educate myself.
I have listed some common complaints leading to a diagnosis. However, as we frequently say, each acoustic neuroma tumor and treatment experience is as unique as a snowflake. They have snow in common but their size and shape vary individually. Each person has a different symptom that prods them to seek treatment. Each person has a little different location of the tumor – some more into the ear canal, some more in the brain. Some push on the brain stem, and most crown the cerebellum. Acoustic Neuromas are easily identified with imaging as it has a distinctive location and general shape.
Here are some common issues:
Hearing Loss – Most people have changes in their hearing as they age. However, if one ear has lost significantly more hearing than the other, it is called unilateral hearing loss which could indicate a tumor growing into the ear canal surrounding the auditory nerve. This was my trigger for treatment.
Tinnitus – Loud ringing in the ears can be caused by many things and is not typically a primary driver in diagnosis. However, as it gets louder, we become more and more aware of it. We hope that treatment will result in less ringing, but unfortunately the gift that keeps giving frequently takes our hearing and leaves loudness in its place as the brain is confused and tries to turn up the volume on the deaf side.
Facial sensations or numbness – I felt like I was drooling but my face was dry. My effected eye started to lose its blink reflex so it was open wider in pictures. Each person’s symptoms are based on how the facial nerve is affected. Because there isn’t a lot of empty space in our heads (true, despite common jokes to the contrary), when the acoustic neuroma grows, it crowds the facial nerve. Following treatment, some people have short or long-term facial paralysis and some do not. In my case, the facial nerve had stretched out to be a flat ribbon stuck to the tumor, which was not good.
Taste changes or difficulty swallowing – Again, nerves that are in close proximity may become effected. Following treatment, these may begin to happen on a short or long term basis. For me, swallowing wasn’t a problem, but food tasted tinny after surgery for a while. Occasionally a strange taste still returns for a short time.
Vertigo and balance issues – if the room is spinning and you haven’t had a drink, you have vertigo. It is a strange sensation that is helped with a foot on the floor or a hand on the wall. I had vertigo many years before diagnosis, attributed it to frequent flying, and held the wall for a week or two until it subsided. My brain adjusted to the loss of right cerebellum functioning and shifted to the left side, along with using other input for balance. As intricate as the brain is, it is very adaptable. My surgeons were surprised that I wasn’t complaining of balance issues despite the size and location of my tumor. They said my left cerebellum had taken over gradually.
Headaches – Many acoustic neuroma patients have had unexplained. I did not have headaches prior to surgery, but still have them afterward – six years out.
Mental confusion – This is not as common but can be linked to acoustic neuromas. The location of the tumor primarily effects our physical instead of mental faculties, but with the brain anything is possible. Following treatment, the same is true.
Fatique – Fatigue can come on very slowly so it hard to link with a brain tumor. However, both before and after treatment is can be experienced.
Finding out, or even suspecting that you have an AN is scary. It is important to remember that experiencing one or more of these symptoms does not mean that you have an acoustic neuroma, but it is worth having checked out. Many of us wish that we had recognized some of these signs earlier. However, the tumor typically grows quite slowly so we just don’t notice symptoms until afterward. Hindsight. . . well, you know. . .
What symptoms did you experience if you’ve had an acoustic neuroma? Did I miss any?
I would have written this post sooner, but I was too tired.
Merriam defines fatigue as “the state of being very tired: extreme weariness.” If you ask an acoustic neuroma survivor about fatigue there is a good chance that they will share a new appreciation for the word. We’ve all been exhausted in life, but there is something about a craniotomy that takes strength that is hard to regain. Yet it also brings out a strength we didn’t know we had.
Fatigue is a very familiar word for anyone who has had treatment for a brain tumor. We need naps. It’s hard to explain the feeling of such fatigue coming over you in the middle of the day that you HAVE to take a nap. Sometimes it is emphasized by a dry eye that will not be satisfied with artificial tears. Closing it is the only way to regain comfort for the remainder of the day. Sometimes it is a dizziness from overtaxing our vestibular (balance) system. Other times it is a matter of just being sick of that darn ringing in our ears and needing to escape it for a short time while unconscious. What used to be a ten minute cat nap is now an hour or two.
Fatigue is a recognized symptom of an AN, but not always discussed. There is an assumption that fatigue is caused by the surgery and recovery process but will go away when “healed.” However, it is frequently a long term or permanent state. It is intensified by drugs that often are required for lingering issues after treatment – pain and depression as examples. It is also caused by the extra work that the brain has to do to compensate for balance or hearing.
There are synonyms for fatigue. Burnout is one that is usually associated with burning the candle at both ends. Burnout for a brain tumor survivor may be from continually treading water and trying to regain one’s old self. It may be from trying to return to work or life having to adjust to new challenges.
Frazzle is another synonym, implying out of control or mentally scattered. That is also accurate for AN survivors as we attempt to sort out sounds if left single sided deaf. Where did a sound come from? Or what is the person in front of us saying when there is background music or noise. We can feel frazzled and feeling unbalanced from excessive movement.
Prostration is a word that I totally get now. Being powerless over the way that your body has removed control over when a good day will come or when you find yourself flat out on the ground either face down (prostrate) or face up with arms flailed to as if we are making a snow angel. Exhale. . . .
Antonyms exist for fatigue also. We do have days when we feel refreshed, and we appreciate them. We look at the puffy clouds against fall colors and inhale with a love for life and the people in our lives. We feel revitalized when we realize how little we now care about things that may have been enormous in our prior lives. We feel rested when we have a good night’s sleep without being awakened by a headache.
We have learned to live minute to minute. We have learned to take one step at a time. We have learned to live with fatigue and know when we have precious moments of rest and peace.
A common statement that I hear is “I don’t know how you do it.” Well, like with anything, one step at a time. One obstacle at a time that is overcome or adapted to. Although we have fatigue we also have a strong desire to squeeze every moment out of life.
Reference – http://www.merriam-webster.com/dictionary/fatigue
In recognition of having my audio book released, I thought I’d start a challenge. When I get to 500 likes on my Facebook Author page, https://www.facebook.com/Sallystapauthor I will have a drawing to give away five audio books through audible.com. If you want to be included, please LIKE my Facebook page, or comment on a post about the challenge. Please help build my likes to the next milestone by sharing the page with your friends on your timeline, or retweeting.
The sooner I get to 500, the sooner I’ll be sending out audiobooks to the winners!!
Thank you to everyone who has been supportive of my blog. You keep me writing!
I have to tell you that I still kind of bristle when someone says, “Hasn’t this turned out to be a blessing in your life?” Well, no. I still would prefer to have NOT had a brain tumor. I’m still working on the “be thankful in all things” part of my experience. I just have to say.
However, given that I did have one (without my vote), there are good things that followed the experience. I have a new appreciation for:
The list could go on. So, bottom line – I don’t recommend having a brain tumor, but it does help us grow in our appreciation of life. It does help us prioritize what is important and what is
insignificant. It is something that we want to hold tight. We know that life is short.
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:
My next event in Kalamazoo, Michigan. Please spread the word to anyone who may be interested in a dialogue with two brain tumor survivors!
Press Release Link – http://www.prlog.org/12370183
Having an acoustic neuroma brain tumor gives us a new view of life, relationships, and priorities. While we each have lived a unique although shared journey with our outcomes, the word “LIVED” needs emphasis. Even as we seek understanding and self-acceptance, we are alive and want to squeeze every drop of pleasure possible from each day.
Despite all or any issues that we deal with daily, there are times when we just do what we want to do. We spend a day shopping too long until we are drop-dead tired with a head that says stop. We go to a concert despite the tinnitus that will be louder afterward. We swing at the playground with our grandchildren, or children, even though we’ll feel woozy when we get off. It’s the price we are willing to pay for fun with our families and loved ones.
This past weekend was just that for me. My family has been going up to Mackinac Island, at the top of Michigan’s mitten, for more years than I can remember. Not every year, but at least every few years so we can enjoy the island’s traditions – ferry’s that go back and forth to the mainland, horses and bicycles only, fudge in every other store, and unpredictability in weather. Sometimes it’s hot, hot, hot. Other times it’s impossible to cut the wind with seemingly endless layers. This time it was pleasant but foggy. My best laid plans to take a ferry ride under the Mackinac Bridge were thwarted by thick fog.
I know that wind and too much activity is a problem for my head. However, this weekend I lived life. I rode on top of a ferry to the island with my sweatshirt pulled tight over my ears. I closed my eyes and absorbed as much of the wind and air and life that I could. I overindulged in Fudge (basically a requirement on the island). I saw my grandson touch a horsey for the first time. I saw the awe in his eyes at the strange sights of horses and bicycles crossing paths. I saw my daughter manage to not scream when a butterfly landed on her head. The love for her child gave her a brave, but guarded smile as she showed how lovely the experience was.
I made sure that our family all wore matching t-shirts, which I know is absolutely dorky. But we lived and loved another weekend away on our “Stap-inaw Mackinaw 2014” adventure. Of course, that included asking a stranger to take a picture of twelve people in matching t-shirts waiting to head in different directions for the day’s activities.
Today I’m at home again, and accept without guilt that I slept all morning after rising to take some medication. Disabled isn’t dead. Disabled is adapting to life by giving in to our less than perfect body while pushing it to live life.
Yes, acoustic neuromas bring many challenges, but they also bring appreciation for normalcy. They emphasize that life is as delicate as a butterfly’s wings. They remind us that, even with one ear, we can hear the clip clop of horses hooves. We are alive. . . AND living.
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.