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.

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sarasally2 | @sarasally2 | Feb 27, 2020

I was diagnosed with an acoustic neuroma last year and was on a wait and see, this year it doubled in size and ma scheduled to discuss options with doc for radiation or surgery, ENT surgeon refuses to do surgery so I have decisions to make and feel left hanging in the air. Anyone have radiation?

sarasally2 | @sarasally2 | Dec 19, 2019

I was diagnosed last year, had all the symptoms for years but no one looked for a tumor so now I am 74 and have other health issues and am doing a wait and see. I go back in Feb for more tests and another MRI. It has been a terrible year of fear, I have lost my hearing on the left side and have bouts of numbness on that side of my face and pain in my skull along with headaches and vertigo, daily dizziness and can't drive anymore. I don't want surgery but I would like some help with all these symptoms. I have been going to Duke in NC as I live an hour or so away.

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2019

In reply to @kimb61 "How did that go for you? I was just diagnosed and am seeing someone at Mayo...." + (show)

Hi @kimb61, I was just thinking about you. How did surgery go?

Welcome @lisajane12. What treatment has been recommended for you?

rosesareredmylove2016 | @rosesareredmylove2016 | Oct 23, 2019

In reply to @kimb61 "How are you doin after this surgery?" + (show)

I had a 3.5 centimeter schwanomma removed from my brain stem March 10, 2014.
Ask questions of the surgeons before so you know what your facing after the surgery.

kimb61 | @kimb61 | Oct 23, 2019

In reply to @dnonnie "I also had surgery for the removal of an acoustic neuroma. 8 week ago ." + (show)

How are you doin after this surgery?

kimb61 | @kimb61 | Oct 23, 2019

In reply to @rosesareredmylove2016 "I Live in Minnesota and am treated at the UofM in Minneapolis, Dr Yuong" + (show)

How did that go for you? I was just diagnosed and am seeing someone at Mayo. I am scheduled to have surgery Nov 15th

lisajane12 | @lisajane12 | Oct 22, 2019

Hi. I live in Columbus Georgia. Recently diagnosed with a 5 mm AN

ellene | @ellene | Oct 1, 2019

In reply to @sarasally2 "I have spent too much time doing the wait and see, can't leave the house because..." + (show)

I am so sorry that you are dealing with such horrible symptoms. If it were me, I would most definitely get to Mayo or at least to a doctor who has some expertise in these types of tumors as soon as possible. One of the hardest things we have to do when we are sick is advocate for ourselves. We have to be strong and fearless in the face of crippling symptoms and doctors who are supposed to know more than what we know. Another resource, if you haven't already been in touch, is the Acoustic Neuroma Association. They might offer some support. I will be wishing you the best.

sarasally2 | @sarasally2 | Sep 30, 2019

In reply to @ellene "I have bilateral vestibular Schwannomas with neurofibromatosis type 2 (NF2). I was diagnosed with the schwannomas..." + (show)

I have spent too much time doing the wait and see, can't leave the house because the dizziness is so bad, no more driving, muffled hearing, gaps in memory,etc all garbled up with migraines/vertigo. I feel like a circus show because the docs have only read about this and never have seen a patient. I think I am going to try to get to a Mayo clinic and see what they have to say.