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

Posted by Tracy Lynne Daley @tracylynnedaley72, Jul 23, 2015

My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person's balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.

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

Jamie Olson | @jamienolson | May 4, 2018
In reply to @jjennings "I will see Dr Neff and Dr Von Gompel. I have had hearing loss on my..." + (show)
@jjennings

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?

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

REPLY
jjennings | @jjennings | May 4, 2018
In reply to @jjennings "I will see Dr Neff and Dr Von Gompel. I have had hearing loss on my..." + (show)
@jjennings

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?

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2018
In reply to @jjennings "I will see Dr Neff and Dr Von Gompel. I have had hearing loss on my..." + (show)
@jjennings

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?

Jump to this post

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.

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davgins45 | @davgins45 | May 10, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

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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

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sarahsurvivor | @sarahsurvivor | May 10, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

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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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debrubin | @debrubin | May 10, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

Jump to this post

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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Moderator
Colleen Young, Connect Director | @colleenyoung | May 10, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

Jump to this post

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?

REPLY
scottmannes | @scottmannes | May 18, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

Jump to this post

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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angelmema | @angelmema | May 31, 2018
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

Jump to this post

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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angelmema | @angelmema | Jun 3, 2018

I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've been having about balance and headache. My hearing gradually went away for a year and a half. It can't be helped with my hearing aid any more. I need information about all the options for the future. I'm70 years old and in otherwise great health.

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