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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.

kkkk | @kkkk | Mar 2, 2019
In reply to @saucy "I went to Mayo for what I thought was vertigo, they did a hearing test and..." + (show)
@saucy

I went to Mayo for what I thought was vertigo, they did a hearing test and I was told by the doctor I had a tumor and needed a MRI. I can't have MRI's due to a metal implant in my body so they did a cat scan. I was told it was normal, however I just recently started having some light vertigo. I'm a flight attendant so even slight vertigo can have an impact but also flying can cause vertigo. So my question was was the cat scan as effective as a MRI and could they have missed ti?

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That is a question for the doctors.

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rosesareredmylove2016 | @rosesareredmylove2016 | Mar 2, 2019
In reply to @kkkk "I did phone Mayo when I first found that I have an AN, but my insurance..." + (show)
@kkkk

I did phone Mayo when I first found that I have an AN, but my insurance at that time was not good in that area. Mayo's office said I could have a DVD of the MRI sent to them.for a second opinion. After my next MRI, I plan to get all three MRIs on a DVD and send them to Mayo's. Now I am on Medicare and a supplement, which should cover better.
Hearing loss seems to be what happens first and balance issues. Depending on the size of the tumor, worse symptoms can occur. My ENT doctor said that radiation is recommened for people past 65 and surgery for younger patients. Smaller tumors are watched with MRIs. 2 percent of radiation cases get cancer, which does not make me very happy, especially since I am already 1 in 100,000 with a AN! When there is surgery or radiation, even worse problems can occur.

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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.

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jjennings | @jjennings | Mar 16, 2019

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!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18, 2019

For anyone interested, there is now a group dedicated to Hearing Loss on Connect here: https://connect.mayoclinic.org/group/hearing-loss/

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spurcey1 | @spurcey1 | Mar 20, 2019

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/
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vickid117 | @vickid117 | Jul 9, 2019

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.

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2 replies
ruby1west | @ruby1west | Jul 9, 2019

I have been diagnosed with 2 different tumors and my medical card wont let them do anything till September.

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ruby1west | @ruby1west | Jul 9, 2019
In reply to @vickid117 "How would I join your group? I had an AN removed 6-8-2018. I just celebrated my..." + (show)
@vickid117

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.

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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!!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019
In reply to @ruby1west "Hello Vicki I am Ruby and have 2 different tumors and am scared to death with..." + (show)
@ruby1west

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!!

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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?

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janoh | @janoh | Aug 16, 2019
In reply to @rosesareredmylove2016 "Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very..." + (show)
@rosesareredmylove2016

Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very scary indeed. I went in to my doctor with an earache. They gave me 2 weeks of antibiotics . After that 2 weeks the side of my head still hurt and I was loosing balance. I went back and was sent to a ENT who did an ear biopsy, nasal passage biopsy and an MRI in a 3 week period.
The biopsy showed nothing as well as the nasal scan. But the MRI came back showing a 3.4 centimeter tumor in my ear canal and growing and pushing my brain stem in too the point that they saw Hydrocephalus(water on my brain). I had no headaches after the earache no pain or dizziness , nor imbalance. There were no symptoms at all.
Three weeks later I met with my surgeons and neurosurgeons and they explained the surgery to me and my children. It was a scary time, BUT I have a daughter who is an RN and any questions I didn't know to answer she did, and by the time my surgery was scheduled, we had all our answers and were as prepared as we could be.
I was diagnosed February 9, 2014, and my surgery was scheduled for March 10, 2014. I am allergic to a lot of the Anastasia drugs they give people when in surgery, so I had to make many scheduled appointments to the neurosurgeons for testing. My surgery was 12 hours. In this 12 hour period I had 4 surgeons and neurosurgeons flip flopping thru my surgery. When one completed their part they came out and updated my daughter so she could update my family as too progress. It took the full 12 hours.
the amazing part is with this surgery it was non cancerous and they scraped on my nerves for 12 hours and needed to leave 2% of the tumor on my brain stem or it would have severed nerves for my face and eye. I am 2 years since this surgery and I still need to see neurosurgeons for MRI and testing. I have imbalance due to the hearing loss in my left ear where the surgery was performed. Things that never bothered me before do now, my balance is still off and will always be off. I just need to adjust my employment and life to the after effects of having needed brain surgery.
Every day is a challenge, but I by the Grace of the Good Lord am alive.

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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!

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