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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lisajane12 | @lisajane12 | Oct 22, 2019

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

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

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?

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.

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?

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.

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?

Lisa Lucier | @lisalucier | Mar 17, 2020

Good morning,
Just wanted to make you aware that Mayo Clinic Connect just opened up a brand new group dedicated to COVID-19 https://connect.mayoclinic.org/group/covid-19/. If you're interested in following it, click the +Follow in the upper right hand of the page. Please feel free to look through the discussions, participate where you'd like and start new discussions about topics relevant to any aspect of coronavirus, COVID-19.

annedodrill44 | @annedodrill44 | Apr 8, 2020

In reply to @sarasally2 "I was diagnosed with an acoustic neuroma last year and was on a wait and see,..." + (show)

I was diagnosed with left acoustic neuroma 9 years ago. I had gamma knife surgery at Mayo Clinic in Rochester MN 3 months later. This past Dec. I lost about 60% of my hearing in that ear all of a sudden.
As part of my treatment I have been followed in Rochester every year, then every 2 years, with follow up MRI’s and exams. They tell me I was lucky I didn’t lose my hearing sooner. Currently having some headache, tinnitus and vertigo issues. Will be looking into hearing aid for left side soon and possible cochlear implant. I can’t say enough good things about care at Mayo, MN. Putting off treatment does not sound wise to me.

mmm | @mmm | Apr 10, 2020

It looks like I am late to the party in joining connect. If, however, anyone is still following this discussion, I wanted to contribute my experience. I had two small acoustic neuromas diagnosed in 2006. Both were treated with gamma knife surgery to preserve excellent hearing. In 2013 a spinal tumor was removed surgically and the neurosurgeon told me I had several “nuisance” tumors (tiny and likely not to present major problems, as they are slow growing.) for five years, I participated in an NIH study which merely monitored the growth and development of symptoms. No interventions were factored into the study. Fourteen years since the gamma knife surgery, my hearing is still in tact, although recently I’ve experienced increased balance problems. Every day is a gift. My father, two uncles, aunt, two sisters, three cousins and their daughter all had or presently have NF2.