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

I’ve had 2 acoustic neurons surgeries and gamma knife. First surgery was partial removal, was 33 mm and left 5 mm because of brain stem involvement. Gamma knife 1 1/5 yrs later and had atypical response and tumor grew back to 25 mm which wrapped around brainstem. Had all this in Wisconsin. Then went to Mayo in Rochester where they removed it all I have facial nerve damage and left sided weakness (Like having a stroke) and eye issues which is fine because I’m alive today because of Mayo Clinic in Rochester. Best Physicians Ever. I thank God everyday for them.

Hearing test showed asymmetrical hearing loss prompting audiologist to suggest I had MRI to check for acoustic neuroma. Wasn’t a trace of one to my great relief

I'm so glad that you returned to tell us the results of your consult, @jjennings. Good news that watch and wait treatment is an option for you. Notice that I said watch and wait TREATMENT. Many people equate watch and wait with "doing nothing", but it isn't. I actually prefer to call "active surveillance". You have a great care team and you're an active member of it. Stay CONNECTed and keep us updated.

Great. Those two are excellent. Everything was explained very thoroughly, and all my questions were answered to my satisfaction. I have opted for observation at this point, with more MRIs late this summer. I will leave the AN alone if it does not grow, trans- labyrinth if it does show signs of growth.

Lucky you! Both Dr. Neff and Dr. Van Gompel are a fabulous care team. Please keep us updated with how your appointment went.

I will see Dr Neff and Dr Von Gompel. I have had hearing loss on my right ( AN side) for many years, just thought it was age or too much loud music. 🙂 Now I know it may have been AN all along. Like so many, I had influenza this January. After recovery, I started having headaches and vertigo issues. Figuring after effects of influenza, like head cold or sinus infection, I didn't think much of it. Also had some dental work done. When those symptoms became more frequent and intense, I checked with my GP, and on my second visit she ordered an MRI, and there it was. Right now, the headaches and vertigo are annoying, but they are not going to stop me from doing anything. My AN is still relatively small, and I am 60 years old, so hoping surgery is down the road if needed at all. Time will tell. Like most, my biggest fear is the possibility of facial paralysis if surgery is needed. Has anyone in the group dealt with that?

Check with your audiologist about a transmitter for your affected ear. I am at 95% hearing loss in my right ear, but the transmitter sends the sound to the hearing aid in my left ear, using Bluetooth technology. It really has helped me.

Hello @jjennings. Welcome. Sorry to hear of your diagnosis and of your mothers passing. Sounds like it's been a really tough month. What questions do you have for the group? Do you know who you are seeing at Mayo? What symptoms did you have when this all started?

Thanks for all the information and support provided by this group. I just got my diagnosis of AN last week, about 2 hours before my mother's funeral. Trying times to say the least. I am meeting with my team of doctors at Mayo next month. I already have 95% hearing loss on the affected side and tinnitus, so that will not be an issue. The headaches and vertigo have become more pronounced since January. Thanks everyone for sharing your stories, so I know a little more what to expect.

I have an acoustic neuroma and was going to go through that big, bad surgery. I prayed about it and got an answer to prayers. Gamma Knife "surgery" was performed on Nov. 23, 2012 at Midland Medical Center, in Midland, Michigan. It is non-invasive, however, it shoots nuclear rays to the tumor. I also have a Meningioma above my left eye. I lost most of the hearing in my right ear, and have constant ringing and chirping in that ear as well. A hearing aid doesn't help much because of the damage done by gamma rays. I have had 2 MRI with contrast since 2012 and both tumors have not grown, but aren't gone. I still have balance issues, but I blame that on having both knees total replacement and ankle and arch reconstruction in the past 5 year. I also try to live life to the fullest, even with all of the major surgeries I've gone through. I actually don't think about the tumors very often because so far they are benign. Good luck and prayers to anyone going through this issue. But please check out the Gamma Knife procedure.