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

Cynaburst, Alumna Mentor | @cynaburst | Sep 1, 2015
I had an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?

Hello ,
My son has being diagnosed with it. His tumor has grown, He is waiting to see the Radiologist. First step seems to be wait and see ,next Radiation and then Operation. It is a rare tumor .I will keep you informed.
My best wishes go out to you .

@alexie1942, I know that the wait and see approach can be unsettling. I prefer to called it active surveillance because it sounds more action-oriented. It is a very common approach with brain tumors. The waiting is tough though.

You might appreciate the posts in this related discussion:
- How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

How are YOU doing?

Yes, I was diagnosed 3 years ago with a small left vestibular nerve schwannoma. This diagnosis is complicated by a diagnosis of bilateral Meniere’s disease (I had a nerve resection on the right vestibular nerve 25 years ago, and it stopped symptoms of vertigo and dizziness in it’s tracks (did end up with moderate hearing loss in that ear, as well as having to relearn to walk). Ten years ago the Meniere’s went bilateral to the left ear, which was my one remaining functioning vestibular nerve, and three years ago diagnosed with the vestibular tumor on that one remaining nerve. I have vicious vertigo, loss of balance, and awful throwing up spells. The nuero surgeon won’t operate on the tumor, if that one remaining nerve is damaged, I will be in a wheelchair.
Anyone have any experience of a double diagnosis on inner ear/vestibular nerve, and options?

I had an acoustic neuroma (actually, vestibular schwannoma) removed 30 years ago, at age 35. It had been growing since I was 7 or 8--I only know because symptoms such as intermittent "sea sickness" nausea and feelings of unreality/dreaming disappeared with the surgery. Thirty years ago, surgery was the only treatment. I believe things are very different today. My neurosurgeon (Chicago area) was one of the top in the country, so I was extremely lucky. I have about 20% hearing in one ear, but the other ear is fine. I also have some balance/proprioceptive issues due to the tumor pressing on the cerebellum for many years. I try to keep as active as possible, but I know my limits and what works for me and what doesn't. My only advice to someone with this diagnosis is to find a neurologist/neurosurgeon who has experience with acoustic neuromas. Not all do. Good wishes!

I was diagnosed with a large Acoustic Neuroma in 2014. I joined the forum on the Acoustic Neuroma website and found lots of information. Unfortunately, post-surgery I found out my tumor was misdiagnosed, so I stop my participation. It, along with sites like this are very helpful.

About 10 years ago I was having problems with vertigo. I was a flight attendant, now retired, so I blamed it on long days of international flying. Finally called Mayo and had an appointment with neurology They first wanted to check my hearing and found asymmetrical healing loss in my left ear. After many hearing tests doctor told me I had a brain tumor! He wanted to do a MRI but I had a titanium device on my esophagus so had to do a cat scan instead. Then after being scared to death was told ah no tumor you're fine. Well now I have a feeling of numbness in my left ear and last night had a swooshing noise in my left ear while trying to sleep. It was gone this morning. I am clumsy and often run into things I see ahead of time. At 71 I worry about falling. I do exercise regularly but notice I don't have the balance I used to. So my question is could the cat scan have missed it or possibly too small to detect? Thanks!!

I have an acoustic neuroma in my right ear and I am 61 years old. I had to get a nice surgery and now it seems that it’s stable. About two years ago, I broke my ankle in three spots. Unfortunately, I broke it when I was on vacation in a different state. When I returned home, I saw a doctor, but she kept me off my feet, such a long and my knees became atrophied. I couldn’t straighten my knees. I am finally able to walk again because I was using a DYNA splint that helped my knees go straighter. As far as my acoustic neuroma, I am having an issue when I stand. I feel very lightheaded. I just hope that the tumor isn’t getting any bigger.

Welcome, @stveperryfn. I can imagine that your mind goes straight to the neuroma when experiencing the light-headedness or anything with your balance, ear or head. Light-headedness upon standing can be any number of things, including being inactive for a while.

Have you made an appointment with your doctor or neurologist to follow up with your new symptoms of feeling light-headed when standing?

I had a brain mri in fall of 2022 MRI showed a small acustic schwannoma , so six months later it grew and the doctors did not want me to go through extensive surgery in my mid 70' . So gamma knife procedure in mid 2023. Had grown a bit again but center crystalizing . My balance is so off, next MRI in Jan 2025.
Im scared