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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
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.
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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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1 ReactionI 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.
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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1 ReactionThank you. I need all the information I can get.
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.
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.
Fevers and severe head pain with Acoustic Neuroma
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1 ReactionHi @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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2 ReactionsI don't have appointment with a neurosurgeon till September. He's the head of the team and the best in Florida they say. I guess that's why there's such a long wait.
Where are you going?