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

Gamma knife work scheduled for the last week of the month.

Thank you Colleen.
My shunt placement on December 9th was sidelined with the Neurosurgeon knicking my liver when he was sending the tubing to the. peritoneal area and needed a general surgeon to perform an emergency to stop the bleeding. Have had intense pain since in the liver area but shunt is healing nicely.
I have been to the surgeons office, had an xray and to the Emergency Room, had a CT Scan with contrast. Doctors can’t seem to find an answer. Have to be on pain meds to control the pain.

I had a consultation last week. The doc described the tumor as schwannoma, though not specifically an acoustic neuroma. He recommended surgery or radiation. The MRI was the best test available. A talk with another doc happens on Monday.

On this forum people said they were told that a 2% chance of some other tumor happening from radiation. I asked about it; he said it's a pretty low dose, and the chance is about 2/10ths of 1%.

@cinlu, it's a lot to take in having 2 conditions and 2 head surgeries in quick succession. You may also be interested in these related discussions about NPH;
- What's the latest normal pressure hydrocephalus (NPH) research https://connect.mayoclinic.org/discussion/normal-pressure-hydrocephalus-2/

- Had Surgery for Normal Pressure Hydrocephalus (NPH)? Are you glad https://connect.mayoclinic.org/discussion/if-you-have-had-surgery-for-nph-are-you-glad/

Cinlu, how was your recovery from the shunt placement? Do you have questions about your upcoming surgery in February?

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.

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

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.

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 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