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.

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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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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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.

Liked by ruby1west

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

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@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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@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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@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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I was diagnosed last year after missing it for years, I am 74 so we are doing a wait and see thing which is driving me nuts with worry. I lost hearing on the side of the tumor, very unbalanced so use a walker or cane, pounding in the left ear, all kinds of symptoms but also have migraines with vertigo. I went to Duke but my doc wants me to go to Mayo

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@sarasally2

I was diagnosed last year after missing it for years, I am 74 so we are doing a wait and see thing which is driving me nuts with worry. I lost hearing on the side of the tumor, very unbalanced so use a walker or cane, pounding in the left ear, all kinds of symptoms but also have migraines with vertigo. I went to Duke but my doc wants me to go to Mayo

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@sarasally2, you must be somewhat relieved to finally have a diagnosis so that you can move forward. If you are planning to get a second opinion at Mayo Clinic, here's some information. You probably have questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Wait and see as a treatment option is tough on the psyche. I can imagine that it is driving you nuts. Has you doctor made a referral to Mayo already?

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@colleenyoung

@sarasally2, you must be somewhat relieved to finally have a diagnosis so that you can move forward. If you are planning to get a second opinion at Mayo Clinic, here's some information. You probably have questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Wait and see as a treatment option is tough on the psyche. I can imagine that it is driving you nuts. Has you doctor made a referral to Mayo already?

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no he hasn't, I didn't think with my insurance I needed a referral. I live in NC but used to live in Tempe so I Was thinking of AZ campus but Florida is closer. thank you so much, just got back from an appointment with a PT but it may be a waste of time as I have tried that before.

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@sarasally2

no he hasn't, I didn't think with my insurance I needed a referral. I live in NC but used to live in Tempe so I Was thinking of AZ campus but Florida is closer. thank you so much, just got back from an appointment with a PT but it may be a waste of time as I have tried that before.

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You don't need a doctor's referral, @sarasally2. You can self-refer. Both the Florida and Arizona campuses have excellent teams. You may be interested in these archived Video Q&A sessions about brain tumors with Mayo experts from both campuses:
– #MayoClinicNeuroChat on Acoustic Neuromas https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/?
– #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/
– #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

Did you go to PT to help with balance and vertigo issues?

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I had an acoustic neuroma removed at Mayo in 1998. I did fine with the surgery and have been doing well for over 20 years. I never think about it now. Let me know if I can answer questions or help you.

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I am 74 and was diagnosed last year, they think I have had it for a while but no one was actually looking for it so I am doing a wait and see but it is driving me nuts with worry. Been dizzy with vertigo episodes for several years, lost hearing suddenly with a vertigo attack, finally I got a neurologist to do an MRI with contrast. Duke surgeons had different ideas on whether to do surgery or not so my internist suggested I go to the Mayo. Are there hotels in the clinic? I am thinking of Phoenix

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@htinlizzy

Yes I just had surgery to remove my acoustic neuroma and wish I had gone to Mayo Clinic Rochester from the beginning. They would have preserved the hearing I still had. To everyone of you Reach out to Mayo Clinic in Rochester Minnesota. They have something brand new. It is amazing! You can preserve your hearing and that is their goal their. They do more of these operations than anyone and everyone is try to come up to where they are at currently. Write to Dr. Matthew Carlson. Tell him you want to get rid of the tumor now why it’s small and preserve your hearing. If you wait you face balance and cross over hearing aids. You want a company that sells the FM boot or your active life’s become inactive. The worst part is when you ask people to please repeat something for the 3rd time and the say it wasn’t important. It was to you! That’s why you want it repeated. You ask people to slow down and speak clearer for you and they don’t. You set up classes for your family to learn how to include you with your hearing loss but they never come. They think it’s just your problem but now everyone needs to take in to account you can’t hear. I was down to 45% hearing loss out of my good ear. Insurance companies won’t pay for a cochlear nerve implant unless you are below 50% in your hearing ear. So you are smart to remove the tumor before you lose your hearing. I lost mine in 6 months. Anyone else

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In response to waiting. I was told we would wait and see. My husband is handicapped and I put myself and my health aside. I didn't have my MRI due to caring for him and his health failing. By waiting and not getting it checked my AN grew beyond radiation as a treatment. The best I could do was to have surgery. My husband passed away and then I had the surgery. I lost my ability to swallow and couldn't pass the swallowing test at the hospital. Couldn't even do the test where a camera was put down my throat to see why I couldn't swallow. I had to have all my food pureed for over a month. My insurance wouldn't cover the Speech therapy unless I had had a stroke. Determination made me learn how to swallow. Thankfully I had no facial paralysis. I lost complete hearing in my right ear. I bought the cross over hearing aides. It can be very frustrating to not know where the noise is coming from. Dizziness and Balance are a daily struggle. It's been a year since my surgery. I recently had a sharp pain behind my ear along with tenderness still behind my ear. The pain had made me nauseous and left about 30 minutes after it came. The barometric pressure in the weather really causes a lot of dizziness. Moving too fast or bending down and getting up fast can bring on the dizziness. I've heard people on this board talk about how great they feel. I hope in time these symptoms subside some. Anyone else on the board deal with headaches?I'm so glad for this group. It helps me to know other people are experiencing these things and maybe I can help them like others have helped me.Wishing healthy days for all.

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@hopeful33250

Wonderful, @rose4622. I'm glad to hear you are feeling better!

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Hi @rose4622

As it has been a while since you last posted, I hope that you are still doing well from your surgery. Did you have any more procedures since the original surgery? Please drop a note when you have time.

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