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

Hello @estherhg and welcome to Mayo Connect.

I appreciate your joining this discussion as we all learn from each other's experiences. I am glad to hear of your treatment and that the tumor is shrinking as a result of the Gamma Knife treatment. How long ago was this treatment? Does your doctor think that your hearing will improve now that the tumor is shrinking?

You mentioned that you would like a support group and I found one website that discussed different groups. Here is a link to the website where you can learn more about that http://vestibular.org/acoustic-neuroma.

I look forward to hearing from you again.

Teresa

My dad had one. Diagnosed 63 years ago in 1955. He lost his hearing in one ear and developed Bell’s Palsy and had to have muscle transfers to lift the right side of his face back up. His mom had an identical tumor and his father died in 1926 from a brain tumor.

Hi @rosesareredmylove2016, I'm not sure if you saw the previous message from @odnut who is going to U of M for treatment of acoustic neuroma, and asks if you have some experience and insight to share on the care you received there.

I went to Vestibular therapy for 8 weeks and it improved The opposite side of the brain will compensate somewhat .. you still will have dizzy moments though and if the tumor grows the balance is affected and you will notice this I could tell by my golf game ...

Be sure to check the ANA site for preparing for surgery I made a few accommodations that were really helpful ! Put all your toiletries Up high , shower chair, wedge pillow for bed , walker, cane , put your clothing in upper drawers to reduce bending forward , have support person for first week home can be really challenging .. but it’s a miracle how quickly your unaffected side kicks in !!! Wish you success You will do great !

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.

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.

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?

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.

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?