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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My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes .... including death. I'm looking for personal information and advice. Thanks for any help.
Hi @moms
I moved your message to this discussion about acoustic neuromas where other Connect members are talking about their experiences. Simply click VIEW & REPLY to go directly to the end of the discussion. I encourage to read the pasts post where you can meet others like
@sepdvm @cynaburst @saucy @lindalb @hoosier2 and read their stories of successful surgical outcomes.
It can be frightening to get this diagnosis. Come talk with others who have been there. I'm sure you have lots of questions. Please ask anything. You're not alone.
You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/
How are you doing?
Hi @moms - I have a very large acoustic neuroma removed 16 years ago, and I am very much still alive. The treatment (if you have an AN at all) will largely depend on the size of the tumor and your age, and some other factors. A great resource to start with is the Acoustic Neuroma Association - http://www.anausa.org. They also have a message board which may be helpful to you, as well as a bunch of information about the different procedures, etc. Though it is a scary thing now, in years to come you will look back at this as a scary experience that you survived. I can virtually guarantee.
I have a small AN that we have been following for 6 years now. It is a slow growing one and so far some hearing loss and constant tinnitus are the only symptoms. From my reading, the slow growing type is the most common and often monitoring is all that is needed. My balance is off from my cancer surgery on the opposite ear, so I really don't know if the AN is causing vestibular symptoms or not. My Mayo ear surgeon says that radiation will be the best choice if this AN increases to the point where it needs to have something done. I hope yours turns out to be small and slow growing.
I was disgnosed wurh a 1.2cm acoustic neuroma last month.as i search google and read the posts i makw myself literally ill. Why did you opt ror radiation versus surgery?
I am going to u of m in may. Can you give some insight on the drs?
I was not impressed with the length of time it takes to get rid of a neuroma with radiation also the side effects of tissue damage around the tumor and an increase in cancer risk post radiation . also to remove the Tumor I if the radiation does not work, makes the tumor more sticky and not as easily to operate if surgery is needed. The surgery was a huge success !
I'm scheduled for an MRI for confirm AN. I'm terrified. I don't scare easily, I've had many serious surgeries in my life, but this is very scary. I think I'm most concerned about the possibility of facial paralysis. I really hope my MRI is negative.
I hope it is too ! But if not this surgery has a lot of success . Please reach out again after you get your MRI results. With the great neuro surgeons out there you will have success !!