Do I have an Acoustic Neuroma? Symptoms

Wondering. . .

Wondering. . .

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?

9 thoughts on “Do I have an Acoustic Neuroma? Symptoms

  1. Bob "Hutch" Hutchinson

    Hi Sally,

    You covered everything. The only additional symptom was the full feeling in my AN ear. It constantly felt like it was underwater.


  2. Suzanne (Sue Bee)

    I ignored my symptoms for more than 10 years. In hindsight, had I stopped blowing my symptoms off as being related to other issues like allergies, sinuses, high blood pressure medication, etc.. and turned to professionals for help, my tumor could have been detected sooner. My extensive AN experience and aftermath, could have been different. As a matter of fact, had I not experienced an intense earache 6 years ago, ( I sought medical attention because it lasted for days, and I had never had an earache in my adult life), I don’t know if I would have found it until 5 years later when I fell on my face and a CT scan was done!

    1. sallystap Post author

      Hindsight shows a lot of denial in my history too. It didn’t occur to me that I had a brain tumor. And the symptoms I had were so “minor” I thought I”d sound crazy to a doctor or I blamed other things. Fortunately, I got in before it compressed my brain-stem any more than it already had.

  3. Mary Cole

    Love reading your posts Sally. Thanks. My neuroma was diagnosed early ie when it was small in 2006. The advised plan was wait, watch and rescan. Then it took off when I had a stressful year. It was surgically removed in May 2013 after I suddenly got hemi facial spasms. Quite weird as my right side got distorted for up to a minute. Started off one or two a day then every few hours. I was also having balance issues and would veer to the right when walking. I guess I was having trouble concentrating and was getting fatigued, but I wouldn’t acknowledge this. Recovery has been hard. ..but I am working 2-3 days a week and have been off painkillers for 3 months. I was addicted to panadol and resorted to a variety of measures to withdraw ie massage, naturopathy, cranial and sacral massage, heat packs, massage, stepped withdrawal. Bizarre…but the professor who did my surgery ended up not doubting my belief that I was hooked. Rebound headaches are a trap. I was also interested that in one of your blogs you said you thought your neuroma was caused by your mobile phone. That has been my firm conviction. Do you have any good research that support this?? Cheers

      1. Mary Cole

        Thanks Sally. I have read the Interphone study. They dismissed the research supporting the link between mobile phones and neuromas when they reviewed the literature, saying the methodology of thst research was questionable. I guess I just think that is how the multinationals discredit good research. Then bury it in the bigger pool of data so the detail gets lost. My experience was to use my mobile in bushfire recovery in 2003 to relocate my workplace. I used it for hours a day for weeks. The pity is that while I have a genuine workplace dispute lodged…I can’t get anyone to support my case.

        1. sallystap Post author

          There is also some belief that military people who have had exposure to sonar radar (did I say that right?) causes problems. As you said, it’s hard to say. I used a cell phone heavily, which is why I have believed it was my cause. However, I know that millions of people used cell phones just as much or more with no tumor. Some of us may have a genetic disposition that allows cells to mutate. Are you participating in the Yale study? On the ANAUSA website there is information about participation. I hope that tells us something.

  4. Mary Cole

    Some other articles say that the type of phone ie older and frequency it uses is also relevant. Thanks for the info.


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