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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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How are you doin after this surgery?
I had a 3.5 centimeter schwanomma removed from my brain stem March 10, 2014.
Ask questions of the surgeons before so you know what your facing after the surgery.
Hi @kimb61, I was just thinking about you. How did surgery go?
Welcome @lisajane12. What treatment has been recommended for you?
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1 ReactionI was diagnosed last year, had all the symptoms for years but no one looked for a tumor so now I am 74 and have other health issues and am doing a wait and see. I go back in Feb for more tests and another MRI. It has been a terrible year of fear, I have lost my hearing on the left side and have bouts of numbness on that side of my face and pain in my skull along with headaches and vertigo, daily dizziness and can't drive anymore. I don't want surgery but I would like some help with all these symptoms. I have been going to Duke in NC as I live an hour or so away.
I was diagnosed with an acoustic neuroma last year and was on a wait and see, this year it doubled in size and ma scheduled to discuss options with doc for radiation or surgery, ENT surgeon refuses to do surgery so I have decisions to make and feel left hanging in the air. Anyone have radiation?
Good morning,
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I was diagnosed with left acoustic neuroma 9 years ago. I had gamma knife surgery at Mayo Clinic in Rochester MN 3 months later. This past Dec. I lost about 60% of my hearing in that ear all of a sudden.
As part of my treatment I have been followed in Rochester every year, then every 2 years, with follow up MRI’s and exams. They tell me I was lucky I didn’t lose my hearing sooner. Currently having some headache, tinnitus and vertigo issues. Will be looking into hearing aid for left side soon and possible cochlear implant. I can’t say enough good things about care at Mayo, MN. Putting off treatment does not sound wise to me.
It looks like I am late to the party in joining connect. If, however, anyone is still following this discussion, I wanted to contribute my experience. I had two small acoustic neuromas diagnosed in 2006. Both were treated with gamma knife surgery to preserve excellent hearing. In 2013 a spinal tumor was removed surgically and the neurosurgeon told me I had several “nuisance” tumors (tiny and likely not to present major problems, as they are slow growing.) for five years, I participated in an NIH study which merely monitored the growth and development of symptoms. No interventions were factored into the study. Fourteen years since the gamma knife surgery, my hearing is still in tact, although recently I’ve experienced increased balance problems. Every day is a gift. My father, two uncles, aunt, two sisters, three cousins and their daughter all had or presently have NF2.
Hi @mmm, welcome to Mayo Clinic Connect. I'm a little late too. I'm really glad you found this group and shared your experience. New people come to the forum everyday and hearing stories like your helps.
I'd also like to invite @sarasally2 @ruby1west @janoh @vickid117 @rosesareredmylove2016 and @kimb61 back into this discussion. @ellene also has NF2.
MMM how often are you monitored? Are you still taking part in the NIH study? How are you managing the balance issues?
Yes, I have NF2, but so far I have only had the bilateral Vestibular Schwannomas. Not that those two tumors aren't enough. I am 56 and was diagnosed just a little over a year ago. I have been looking for support groups for people with bilateral VS, but I haven't found one. There are many for unilateral, but not that I have found for bilateral. Given the only tumors I have had with NF2 are the Vestibular Schwannomas, I don't feel like an NF2 support group would be the right fit either. While I am not necessarily needing emotional support, I know that there are others who have been where I am and there is no need for me to reinvent the wheel, so to speak. I am mostly looking for support in terms of services and technology. I had Gamma Knife on both tumors 2 weeks ago. The disequilibrium is much worse since gamma knife. I have lost almost all of my hearing in my left ear over the last year or so and have fairly good hearing in my right ear. My doctors have all said I have a pretty good chance of losing all of my hearing, but that I would likely be a good candidate for cochlear implants down the road. I will have another hearing test and MRI in 6 months.