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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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Hi Katfred! I had an acoustic neuroma removed in 1999. Yes life has changed but nothing that can't be handled. I found it helpful to reach out to The Acoustic Neuroma Association. Lots of helpful information and a forum to connect with others that have this same tumor as well. I hope you feel better and this website will help you as well.
Was diagnosed with acoustic neuroma a month ago by ENT after mri. I have all the symptoms of acoustic neuroma. Neurosurgeon said it was trigeminal neuroma after looking at mri. He wrote the name of tumor down on card after I wanted to know how to spell it. Said to watch and wait, that was it. Gave me no other info! Sent me to neurologist for pain meds for the nerve pain. She knew little about my condition. Recommended watch and wait too. I will have another mri in 5 months. Left with prescription for gabapentin and no info about what I had. Pain and symptoms are getting worse. Am I crazy to want another opinion to find out what's going on in my head and what to expect? I live in NC so I want to go to Duke University Hospital for 2nd opinion. Neurologist said I had to ask neurosurgeon to refer me. Going to see how that goes this week. Thanks and praying for all.
I have an AN that was diagnosed in 2015. I was wondering if anyone opted for surgery directly through the ear? I know that it is 100% hearing loss in that ear but the surgery is not as involved.
When I asked my ENT doctor about surgery that way, he said that I was not a candidate for that since I still had quite a bit of hearing in my ear and my acoustic neuroma is still small. He suggested wait and watch and eventually radiation, when and if necessary, which I was also told can cause cancer in 2 percent of patients. That was a year ago, and I am due for another MRI.
I had surgery for a 4cm at Vanderbilt Tn in 2014 I am in charge of a walk for this rare tumor in Ga on July 22 to help bring pubic awareness to this tumor. Their is an Acoustic Neuroma Association the corp office is in ga their are support group for Acoustic Neuroma all over the USA go on the association to find one in your area
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1 ReactionYesterday was my 12 year anniversary! 10 hour surgery and I found out later I had hydrocephalus and had a LP shunt put in. I lost some movement on the right side of my face and full hearing in my right ear.
There are days that I forget that I had a tumor and I'm so grateful for everything the Mayo and the surgeons were able to do.
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1 ReactionHas anyone ever heard or had this type of tumor?
@saucy yes my daughter has one. They are just watching it right now and aren't worried so much about it because she does have a different tumor that is cancer. She lost her hearing in her right ear about 5 years ago and just recently learned that may be the cause of her hearing loss. My understanding is acoustic neuroma tumors are not cancer. (Benign)
Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!
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1 ReactionHello @user_chea8a92a I'm Scott. My wife had an ogliodendroglioma. I'd be willing to share what I learned from being her caregiver if that would help or be of interest.