Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

@lavmaul2018, I can imagine you're scared. Has the balance worsened recently? Have you told your neurologist about your concern?

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 ).

@rw01, I'm so glad that your balance issues were investigated further. Have you had further testing? Any update? How are you doing?

Sorry, I edited this and could not delete my first comment

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

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.

Hello from a 75-year old who has been dealing with two acoustic neuromas since 2006. At that time, I had Gamma Ray surgery to treat both of them, when they were tiny. The goal was to preserve hearing, and with the Grace of God, my hearing has been in tact. For five years, I participated in an NIH study which monitored the growth and development of the tumors. There was no active treatment, although I did have a spinal tumor removed when it threatened problems. The past two years, however, have brought significant balance challenges. I use a rollator which gives me some speed and confidence. Got to keep moving, so you CAN keep moving! I’ve seen a specialist (Neurofibromatosis-2) in Chicago, and he is in the “wait and watch” mode—MRIs indicate little change and there is nothing that he could do. I’ve done vestibular therapy which gave me exercises I can no longer do. So…I live each day to the fullest and am grateful for all of the things I still can do.

I have been recently diagnosed with this condition as well as normal pressure hydrocephalus.
On Dec 9, I had a shunt placement and healing from this surgery to continue on with another surgery in February to remove the schwannoma or acoustic neuroma and I will lose hearing in affected ear.
This seems like so much to grasp for myself. Scary stuff.

I’ll be thinking of you in February. As they say, “May the force be with you!” Please keep us updated.

I have an acoustic neuroma which presented as balance issues followed by sudden hearing loss in Nov of 2023--I am now deaf in the ear with the tumor. First MRI Dec 2023 at 1.3 cm, second in July, 2024 at 1.7 cm and I just had a 3rd MRI but no results back yet.
Recommendation is to do surgery as it is growing fast. I was told that radiation fails in 30% or more of patients who have fast growing tumors. I recommend that you join the Acoustic Neuroma Association which has support groups, videos and presentations, and question forums such as this one. Also, I am happy to discuss further.