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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Hello , My son is still being monitored ,Waiting to see the Radiologist . Hope to get some answers.
Thank you kindly for your to suggest watching the video
I am now at 10 years of monitoring a slow growing acoustic neuroma on one side. We have gone from yearly to every 2 years and will go longer now as it has shown little change. My hearing has worsened some over that time and the ringing is constantly present. My balance issues are due to cancer surgery on my skull and other ear and stable. I have been very lucky with this AN, which is good since I am 10 years into living with metastatic Squamous Cell Carcinoma. My Mayo ENT surgeon says I will be a candidate for cochlear implant as the hearing decreases further. I hope @alexie1942 that your son has a small and slow growing AN that can be monitored for a long time.
Cynaburst, Alumna Mentor | @cynaburst | Sep 1, 2015
I had an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?
My son has being diagnosed with it. His tumor has grown, He is waiting to see the Radiologist. First step seems to be wait and see ,next Radiation and then Operation. It is a rare tumor .I will keep you informed.
My best wishes go out to you .
@alexie1942, I know that the wait and see approach can be unsettling. I prefer to called it active surveillance because it sounds more action-oriented. It is a very common approach with brain tumors. The waiting is tough though.
You might appreciate the posts in this related discussion:
– How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/
How are YOU doing?
Yes, I was diagnosed 3 years ago with a small left vestibular nerve schwannoma. This diagnosis is complicated by a diagnosis of bilateral Meniere’s disease (I had a nerve resection on the right vestibular nerve 25 years ago, and it stopped symptoms of vertigo and dizziness in it’s tracks (did end up with moderate hearing loss in that ear, as well as having to relearn to walk). Ten years ago the Meniere’s went bilateral to the left ear, which was my one remaining functioning vestibular nerve, and three years ago diagnosed with the vestibular tumor on that one remaining nerve. I have vicious vertigo, loss of balance, and awful throwing up spells. The nuero surgeon won’t operate on the tumor, if that one remaining nerve is damaged, I will be in a wheelchair.
Anyone have any experience of a double diagnosis on inner ear/vestibular nerve, and options?
I had an acoustic neuroma (actually, vestibular schwannoma) removed 30 years ago, at age 35. It had been growing since I was 7 or 8–I only know because symptoms such as intermittent "sea sickness" nausea and feelings of unreality/dreaming disappeared with the surgery. Thirty years ago, surgery was the only treatment. I believe things are very different today. My neurosurgeon (Chicago area) was one of the top in the country, so I was extremely lucky. I have about 20% hearing in one ear, but the other ear is fine. I also have some balance/proprioceptive issues due to the tumor pressing on the cerebellum for many years. I try to keep as active as possible, but I know my limits and what works for me and what doesn't. My only advice to someone with this diagnosis is to find a neurologist/neurosurgeon who has experience with acoustic neuromas. Not all do. Good wishes!
I was diagnosed with a large Acoustic Neuroma in 2014. I joined the forum on the Acoustic Neuroma website and found lots of information. Unfortunately, post-surgery I found out my tumor was misdiagnosed, so I stop my participation. It, along with sites like this are very helpful.