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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.

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?

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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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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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10 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 3, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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Hi @angelmema and welcome to Connect. I moved your message to the Brain Tumor group and this existing discussion about acoustic neuroma. I did this to introduce you to other members talking about acoustic neuroma on Connect. Please click VIEW & REPLY button and you'll be able to read through all the past posts, where you'll meet members like @jjennings @sepdvm @ccubed @hoosier2 @rosesareredmylove2016 and @cynaburst.

You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/

Angelmema, has surgery been recommended in your case?

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Cynaburst, Alumna Mentor | @cynaburst | Jun 3, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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I had surgery to remove a large AN over 16 years ago now. The treatment depends on the size and location of your tumor. Some folks just follow with scans every so often. Some have surgery and others radiation. I found that the Acoustic Neuroma Association website - http://www.anausa.org had a lot of useful information. And those of us here are happy to help you sort things out. Have your doctors given you any recommendations? It is best to find a place where they treat ANs alot and go from there. Wishing you all the best.

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angelmema | @angelmema | Jun 3, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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I'm being scheduled for an appointment, my first, with a neurologist. Just found out tuesday. I have no idea what's best. I want to read everything I can about this rare anomaly. I have wonderful friends who care.

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angelmema | @angelmema | Jun 3, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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Thank you. I need all the information I can get.

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Cynaburst, Alumna Mentor | @cynaburst | Jun 3, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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Make sure you find out what the size is and whether it is affecting any critical structures. Do you have any usable hearing left? That will probably play a large part in determining which treatment, if any, is best for you. You may wind up having to choose one method or another based on personal preference and your feeling about the doctor that you like best. Remember, it is a very slow growing tumor so the reality is that you will probably have some time to process and figure out the best approach. Let us know how we can help support you.

REPLY
angelmema | @angelmema | Jun 4, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

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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It is 1.1cm as of last Tuesday. Thank you for your encouragement. That's exactly what I need right now. One day at a time with all the information I can get from everyone and with the leading of Jesus.

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dgosney23 | @dgosney23 | Jul 8, 2018

Fevers and severe head pain with Acoustic Neuroma

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 8, 2018
In reply to @dgosney23 "Fevers and severe head pain with Acoustic Neuroma" + (show)
@dgosney23

Fevers and severe head pain with Acoustic Neuroma

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Hi @dgosney23, welcome to Mayo Clinic Connect.
You'll notice that I moved your message to this existing discussion about acoustic neuroma. Click VIEW & REPLY in the email notification and you'll be able to scroll through past messages. I moved your message so that you could meet other members, who have experience with AN, like @angelmema @cynaburst @jjennings @sepdvm @ccubed @hoosier2 @rosesareredmylove2016 and others.

DGosney, you mentioned fevers and severe head pain. Have you just recently been diagnosed with an acoustic neuroma? Or are you still experiencing these symptoms after treatment?

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