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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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I was diagnosed about 3 years age with an acoustic Schwannoma, basically the same as acoustic neuroma. Mine grew over 18 months of brain mri. Had Gamma Ray KNIFE surgery ( no cutting) . Another mri in February and I’m so scared it’s grown. I’m 79 so surgery is not an option. My balance is compromised but work on it. Totally deaf in left ear from radiation. Let you know in February, merry Christmas to all.
I had an acoustic neuroma surgically removed in 1999, 25 years ago. The surgery was 6-7 hours. I was 48 years old at the time. The tumor was removed and the facial nerve was involved so I have right sided facial paralysis. Also, as a result of the surgery, I am deaf in my right ear, still have dry eye problems, use drops every day. Balance is still a problem, exercise for that is very helpful. What has bothered me the most was losing my smile (I'm still not crazy about smiling for a picture) but it is a bit better and I had a face lift with a great plastic surgeon in Denver. It was in 2009 and it made a huge difference. Also, had botox shots for a while and it helped to even out face and neck which really helped, but I no longer go for those.
If you need surgery, be sure you go to the most experienced surgical team you can find. Today you have many more options than I had. Wishing you the best? Nancy
Sorry, I edited this and could not delete my first comment
@rw01, I'm so glad that your balance issues were investigated further. Have you had further testing? Any update? How are you doing?
I have had balance problems ( not huge ) since July ( maybe earlier ). Dismissed it but mentioned it to the nurse during an annual checkup. MRI about two weeks later. A tumor, but not identified specifically.
Waiting for Monday's mail to set up more testing with a referral in a larger hospital network than in my city.
My fingers have trouble typing. Nervousness? Bad keyboard? Winter is here? ( not toasty warm )
No headaches, troubles concentrating, hearing problems.
55 years old ( in that 40-60 window for the tumor type ).
@lavmaul2018, I can imagine you're scared. Has the balance worsened recently? Have you told your neurologist about your concern?
I had a brain mri in fall of 2022 MRI showed a small acustic schwannoma , so six months later it grew and the doctors did not want me to go through extensive surgery in my mid 70' . So gamma knife procedure in mid 2023. Had grown a bit again but center crystalizing . My balance is so off, next MRI in Jan 2025.
Im scared
Welcome, @stveperryfn. I can imagine that your mind goes straight to the neuroma when experiencing the light-headedness or anything with your balance, ear or head. Light-headedness upon standing can be any number of things, including being inactive for a while.
Have you made an appointment with your doctor or neurologist to follow up with your new symptoms of feeling light-headed when standing?
I have an acoustic neuroma in my right ear and I am 61 years old. I had to get a nice surgery and now it seems that it’s stable. About two years ago, I broke my ankle in three spots. Unfortunately, I broke it when I was on vacation in a different state. When I returned home, I saw a doctor, but she kept me off my feet, such a long and my knees became atrophied. I couldn’t straighten my knees. I am finally able to walk again because I was using a DYNA splint that helped my knees go straighter. As far as my acoustic neuroma, I am having an issue when I stand. I feel very lightheaded. I just hope that the tumor isn’t getting any bigger.
About 10 years ago I was having problems with vertigo. I was a flight attendant, now retired, so I blamed it on long days of international flying. Finally called Mayo and had an appointment with neurology They first wanted to check my hearing and found asymmetrical healing loss in my left ear. After many hearing tests doctor told me I had a brain tumor! He wanted to do a MRI but I had a titanium device on my esophagus so had to do a cat scan instead. Then after being scared to death was told ah no tumor you're fine. Well now I have a feeling of numbness in my left ear and last night had a swooshing noise in my left ear while trying to sleep. It was gone this morning. I am clumsy and often run into things I see ahead of time. At 71 I worry about falling. I do exercise regularly but notice I don't have the balance I used to. So my question is could the cat scan have missed it or possibly too small to detect? Thanks!!