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

I was diagnosed last year after missing it for years, I am 74 so we are doing a wait and see thing which is driving me nuts with worry. I lost hearing on the side of the tumor, very unbalanced so use a walker or cane, pounding in the left ear, all kinds of symptoms but also have migraines with vertigo. I went to Duke but my doc wants me to go to Mayo

@sarasally2, you must be somewhat relieved to finally have a diagnosis so that you can move forward. If you are planning to get a second opinion at Mayo Clinic, here's some information. You probably have questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Wait and see as a treatment option is tough on the psyche. I can imagine that it is driving you nuts. Has you doctor made a referral to Mayo already?

no he hasn't, I didn't think with my insurance I needed a referral. I live in NC but used to live in Tempe so I Was thinking of AZ campus but Florida is closer. thank you so much, just got back from an appointment with a PT but it may be a waste of time as I have tried that before.

You don't need a doctor's referral, @sarasally2. You can self-refer. Both the Florida and Arizona campuses have excellent teams. You may be interested in these archived Video Q&A sessions about brain tumors with Mayo experts from both campuses:
- #MayoClinicNeuroChat on Acoustic Neuromas https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/?
- #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/
- #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

Did you go to PT to help with balance and vertigo issues?

I had an acoustic neuroma removed at Mayo in 1998. I did fine with the surgery and have been doing well for over 20 years. I never think about it now. Let me know if I can answer questions or help you.

I am 74 and was diagnosed last year, they think I have had it for a while but no one was actually looking for it so I am doing a wait and see but it is driving me nuts with worry. Been dizzy with vertigo episodes for several years, lost hearing suddenly with a vertigo attack, finally I got a neurologist to do an MRI with contrast. Duke surgeons had different ideas on whether to do surgery or not so my internist suggested I go to the Mayo. Are there hotels in the clinic? I am thinking of Phoenix

In response to waiting. I was told we would wait and see. My husband is handicapped and I put myself and my health aside. I didn't have my MRI due to caring for him and his health failing. By waiting and not getting it checked my AN grew beyond radiation as a treatment. The best I could do was to have surgery. My husband passed away and then I had the surgery. I lost my ability to swallow and couldn't pass the swallowing test at the hospital. Couldn't even do the test where a camera was put down my throat to see why I couldn't swallow. I had to have all my food pureed for over a month. My insurance wouldn't cover the Speech therapy unless I had had a stroke. Determination made me learn how to swallow. Thankfully I had no facial paralysis. I lost complete hearing in my right ear. I bought the cross over hearing aides. It can be very frustrating to not know where the noise is coming from. Dizziness and Balance are a daily struggle. It's been a year since my surgery. I recently had a sharp pain behind my ear along with tenderness still behind my ear. The pain had made me nauseous and left about 30 minutes after it came. The barometric pressure in the weather really causes a lot of dizziness. Moving too fast or bending down and getting up fast can bring on the dizziness. I've heard people on this board talk about how great they feel. I hope in time these symptoms subside some. Anyone else on the board deal with headaches?I'm so glad for this group. It helps me to know other people are experiencing these things and maybe I can help them like others have helped me.Wishing healthy days for all.

Hi @rose4622

As it has been a while since you last posted, I hope that you are still doing well from your surgery. Did you have any more procedures since the original surgery? Please drop a note when you have time.

I have one, it has affected my hearing and balance, eye,etc So many symptoms that they aren't sure which are from the tumor, I am doing a wait and see, been a year since my last MRI at Duke in NC but want a second opinion from Mayo, just not sure about traveling. I go to PT for balance and vertigo so not driving anymore as my balance is so off. I have pulsatile tinnitus in the left ear and sometimes my eye droops and my face goes numb and burns bright red. I am 73 so they disagreed as to what to do so I have been dangling with anxiety.

They make you feel like you're crazy that the symptoms are just in our own minds! So sorry i feel your pain!