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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That is a question for the doctors.
I had brain surgery in 2014 for a 3.5 centimeter tumor on my brain stem. Had the 12 hour surgery, still have 2 percent on my brain stem . Since my surgery , I’ve bad balance issues due to hearing loss in left side. Depending on barometer depends on my day, good, bad or other issues. I wish you all the luck in the world and many many blessings.
Hi vickid117, I was diagnosed with an acoustic neuroma a year ago, and I am currently using the observation approach. My neuroma took my hearing in my right ear many years ago. About 3 years ago I got Phonak hearing aids like what you describe, one side hearing aid and the other side a transmitter. At first, I had trouble locating where sound was coming from, but that has gotten much better with time as my brain has adjusted. Hopefully yours will, too. Also, when I go somewhere loud like a sporting event or concert, I usually just turn the hearing aids off. I saw Steven Tyler in January, and it was great! Keep living life to the fullest! Good luck!
For anyone interested, there is now a group dedicated to Hearing Loss on Connect here: https://connect.mayoclinic.org/group/hearing-loss/
Hi Tracey, my name is Steve. I was Diagnosed with a 4.7cm AN. Today is the 4th Anniversary of my Diagnoses. I had surgery May 15, 2015 with Dr Bendock at the Mayo, Phoenix. There is life after your AN. My life has been great ! The following is a post I wrote on the 1 year after my diagnosis. I hope it gives yo hope. I also am a coach on the “Acoustic Nueroma” Face Book Group with over 5,000 loving, supportive AN Warriors.
https://www.facebook.com/1364354108/posts/10214156137881804/
How would I join your group? I had an AN removed 6-8-2018. I just celebrated my year anniversary. I had my surgery at Johns Hopkins Hospital in Baltimore, Md. I lost hearing in my right ear. I have hearing aides now. The one hearing aide tells my other ear what it hears. It is very challenging some days. I am thankful to come through the surgery, and also for the challenges I endure daily while still being alive.Balance and headaches seem to be the lasting symptoms that come and go.My name is Vicki.
I have been diagnosed with 2 different tumors and my medical card wont let them do anything till September.
Hello Vicki I am Ruby and have 2 different tumors and am scared to death with what will happen, so it makes me happy to here you are a survivor!!
Hi @ruby1west, welcome to Mayo Clinic Connect. It does help to meet other survivors like @vickid117 @kkkk @cynaburst @htinlizzy and others.
Ruby, you mention that you have 2 different tumors. Are they both acoustic neuromas? Is surgery recommended for you?
So very happy for your recovery! My daughter, 39 year old mother of two babies, has a 4cm benign Schwannoma on her brainstem. This was accidentally found on an MRI she had 1/23/19 when she suffered a major brain hemorrhage. She had the Craniotomy, Cranioplasty and is in a semi-conscious state in a nursing home. The neurosurgeon said the surgery to remove the Schwannoma is very risky because it is pushing on the brainstem and her neurological state.
Can you discuss your surgery a little more and do you know of any other options other than surgery?
Thank You!