Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

I can understand your confusion. When I had mine in 1997 they did not have proton therapy. I think I would have looked into it though. In Gamma Knife they attach a 'halo bracket' onto your head. They use screws and they go into your skull bone. Sounds awful but they give you a local anesthetic and it really doesn't hurt. It's weird walking around with this thing attached to your head though! They use it to calculate where the radiation should go to reach the tumor and avoid the rest of your brain area. If you don't like the idea of that, I think proton therapy just uses a cap that is not attached to your head. I was 57 when I had this done, so we are/were close in age. I am now 76 and the last time I had an MRI (about 2 years ago), it had shrunk a little more. So GK really does work. Good luck to you. I would be more than happy to answer any other questions you might have. Happy Thanksgiving to you.

@katfred Just wanted to tell you that I reading your posts makes me realize I may need to act on a doctor's advice. Though my regular doc and I both are hesitant about rushing into gamma knife treatment (because the radiologist's report), I am understanding why the the neurologist I saw advised gamma knife. He said the small size makes it safer for surrounding tissue. I just don't want to rush into this either as it is radiation.But, it sure puts things into perspective to read about everyone and their challenges with this thing. Thank you and good luck. I hope you experience relief soon. My prayers are with you.

I should do more homework on how to do this site, but hopefully I am on the right path. I am symptom free, so how did they find my acoustic neuroma? In 2011, I had an unrelated severe headache, had an MRI (w/o contrast as I waived it), and it showed a 4mm or so possible menegioma. My blood test ended up revealing a parathyroid adenoma (too much calcium in blood) which was removed that year at MD Anderson by an awesome doctor. I got a hearing test, as advised after MRI, and had no problems. I had not idea I should be monitoring it. Fast forward to August of this year. I had a physical, and my doctor advised me to monitor it, and sent me for an MRI with and w/o contrast, and schwannoma/acoustic neuroma was neurologist diagnosis. What I didn't expect was the advice of gamma knife. Doc said my tumor was small enough to do it now, but if it grows, the options are fewer. I will see a radiology oncologist next month for further info. Of course it concerns me. I have decent health for a 58-year-old. I don't take any meds and am trying to stay clear of ever creeping up BP. Is gamma knife the way to go? I have heard of proton therapy, and MD Anderson is close by. I don't know the major difference, and if I am even a candidate. I know I am lucky this neuroma was discovered before I had balance and hearing problems. Reading all the posts made me count my blessings on how this unfolded and the options I have. I guess I am looking for advice, information, and experiences. I have read a few already. Thanks for your time.

Hi Kat,
That is a very good question to ask the ENT doctor tomorrow. I wish I had an answer for you. Would you write us after tomorrow to let us know what you find out about why this test is done.

For others reading this, here is a description about Videonystagmography (VNG) from Mayo Clinic.
"This test evaluates balance function by assessing eye movement. Balance-related sensors in the inner ear are linked to muscles that control eye movement. This connection enables you to move your head while keeping your eyes focused on a point. In a VNG evaluation, warm and cool water or warm and cool air are introduced into the ear canal. Measurements of involuntary eye movements in response to this stimulation are performed using a special pair of video goggles."

Kat, it would be really informative to hear straight from the source (you) what this test is like. I hope you'll share when you're up to it.

For further reading, here is information from Mayo Clinic on the gamma knife also known as brain stereotactic radiosurgery http://mayocl.in/2egI5oM

So did mine. I explored my options. Everyone has to do what she thinks best. Good luck to you.

My doctor only suggested surgery

I have no idea what a videonystagmogram is, so I can't answer you. Have you looked into Gamma Knife at all?

I suppose they left the 2% so that they didn't mess with your facial nerves which could be a real problem. Good for them! Your doctor might be talking about gamma knife, but they have many other forms of this now which they use for all kinds of tumors. Because the process directs many rays directly to your tumor, it has no effect on any other part of your brain. There is no pain involved and it does not effect your body in any way -- just the tumor! I would certainly recommend it to anyone.

Tomorrow i have appointments all day with E.N.T videonystagmogram , i guess its a mandatory testing before i have surgery the 23rd. If my imbalance is from my tumor, why is this testing needed? Thabk you