Experience with acoustic neuroma?

Posted by saucy @saucy, Oct 1, 2017

Has anyone ever heard or had this type of tumor?

Interested in more discussions like this? Go to the Brain Tumor group.

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.

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I had one removed in September. Last summer I started having a lot of buzzing in my right ear and dizziness. I went to the Dr and he put me on some medicine which helped but I couldn't hear out of it. I went through several rounds of this and so he sent me to an ENT who found I lost over 80% of the hearing in that ear. He did an MRI and found the AN. I have been under the care of Dr. Babu at the MI Ear Institute who is the BEST for these. I had the surgery and am doing very good. I had a few problems following surgery relating to my baha hearing implant but otherwise good. 8 months out and I have traveled across the country multiple times, have been working and even wearing heels again. I still have some issues with the taste in my mouth. Just an fyi, I was not in great shape when I had the surgery having had 2 major back surgeries in the year and a half before. I am 48.

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Welcome to Mayo Clinic Connect @davgins45 @sarahsurvivor and @debrubin. You may also be interested in this discussion about AN.
– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://mayocl.in/2iVdye1

Davgins, I'm glad that your brush with acoustic neuroma was a false alarm. What was the cause of the asymmetrical hearing loss?

Sarah, Having a tumor wrapped around the brain stem does make surgery more complicated. Do you struggle with balance issues?

Deb, interesting about the taste issues. Do you mean that things taste odd or that you've lost your sense of taste?

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Several yeas ago I had an operation for bilateral acoustic neuroma at Barrows Neurological Institute in Phoenix, AZ. I now have partial hearing only in one ear. Yes, I still have both tumors but small that we are watching yearly with MRI's. They after many hours of surgery had to stop because one tumor was wrapped around the brain stem. After 23 days in intensive care I'm still alive. (that's a good thing). They later told me it was touch-n-go for a while. They said if they totally removed the tumor on my left side I would not have any hearing at all. At least I have a tiny bit in my left ear. It's hard trying to maneuver through life being almost totally deaf, but it's better then not maneuvering at all.

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I was just diagnosed Tuesday with AN. I'm searching for all the information i can get from people who have this. It is small but i lost all the hearing in my left ear. I stumble and walk unsteady and there's this weird taste in my mouth.

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