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?