Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person’s balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.
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Hi Katfred… I was equally shocked when my ENT told me I had a 3.5centimeter brain tumor pushing in my brain stem…. I went to my doctor with an Earache…
I hope all is well with you…???
Hi cynaburst… Your surgery was 15 years ago you said??? How long did it take you to feel somewhat normal after your surgery? My head still feels like its floating, theres days my balance is so off…I feel sometimes like i have an ocean in my head….I still have 2% of the tumor on my brain stem…Did your surgeons get all of yours???
Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot
Wow…I’m sorry to hear they moved your surgery so far out…Why did they do that if your balance is so bad and you can no longer work from this happening???
Hey Tracey: I was diagnosed with an acoustic neuroma 2 years ago. I went into my doctor with an earache. Boom 2 weeks later was at an ENT, and diagnosed with this type of tumor. At the time I had no idea what an acoustic neuroma was.I’ve learned a lot since my surgery. I wouldnt want anyone to need to undergo this… I had a 12 hour surgery March 10th 2014.. After the surgery I now have No hearing on my left side. Tumor was on my hearing nerve and in my ear canal, so my hearing went. I have 2% still on my brainstem nerves. The after effect of the surgery, left me imbalanced, my head on a rainy day feels like its floating. windy days i have to be careful because I feel off balance. Its weird, scarrey and i have NO clue whats in the future,,,….I just know I am alive, it was NON cancerous, it could grow. And I thank GOD for every day I am alive…
I feel pretty normal most of the time, but there are occasions every year or two where I feel floaty or weird for a few weeks, and then it will go away again. Every time I worry that I am having a regrowth. And yes, they did get my whole tumor.
Hi Cynaburst: I still have that 2% on my brain stem. I just had my yearly MRI, and my ENT said theres a part of the tumor that has grown minutely. I am wondering if that is not effects of the growth I am feeling…
Unfortunately they couldnt get the whole tumor, as it rests on 5 nerves on my brain stem that control my left side facial nerves, eye, …So I get a MRI every year now.
I was told that the e.n.t doctor and neurologist works as a team and unfortunately they are so booked . November is the earliest opening
@katfred where are you being treated and where do you live?
I live in south beloit Illinois and being treated at University of Wisconsin in Madison