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

Hi..My name is Rose and I was diagnosed in 2004 with a schwannoma on the left side of my face. I was told it was a facial neuroma and very rare. I was sent to a specialist in Arizona, where I was living at the time. I had 10 radiation treatments and have been monitored with MRI every 6 months. The surgery for a facial neuroma is debilitating. I will lose all control of face muscles. When having MRI 3 years ago they discovered 2 meningioma tumors, one in frontal lobe and one at base of my brain. I live in Connecticut now and started seeing only Dr at the time who worked with this type of tumor in CT at Yale, the facial neuroma - schwannoma. I'm almost 80 now and ended up going to see another specialist in Boston Mass. General. He did tell me that the radiation could cause cancer, I was never informed of that but so far so good! The radiation was to help stop the growth of tumor and it worked until 5years ago. It is now growing very slowly. It is a wait and see thing!! I think it would be best to see a Dr who will tell you exactly what type of tumor you have. From my understanding the treatment for acoustic or facial tumor are very different.

Thank you for the suggestion. Somehow I managed to also discover the UCSD clinic. I sent some of their online literature to my daughter. But we also got a response from Mayo and my daughter is sending all of her information to them. As Colleen said, this is turning out to be a second opinion.

Third day of GK treatment. I lie down, the shaped mask is put on, a CT scan happens to be sure the head position is good. Partially slid, mostly top portion of the head into the machine. Two tablets ( 2 mg each ) of Dexamethason in the morning with food.
This is at UC San Francisco ( a high volume hospital? ).
The treatment where people have some headgear with little bolts seems different.

A belated welcome, @djewell823. Thanks for the information and your experience with both UCSD and Mayo Clinic.

What treatment did you have at Mayo Clinic? How are you doing now? Do you return to Mayo for follow-up or follow-up closer to home?

Thanks, Colleen!
I had my 1.7 cm acoustic neuroma removed by the retrosigmoid approach in late May, 2024.
My hearing was partially preserved and no damage to my facial nerve, thankfully. I do have severe headaches, however, which have definitely affected my quality of life. I live 8 hours from Rochester so I see local doctors now, although I message my surgeon with various questions and appreciate hearing back from Nurse Marina.
I had my follow-up MRI at Mayo 3 months after surgery and don’t have to have another one for two more years.
If anyone has figured out a solution to post-surgical headaches I’d be very grateful for the information.

I was diagnosed by surprise with an acoustic neuroma tumor when my right ear hearing suddenly stopped working. I’m 43. It went out Feb 16 2025. I went to urgent care the next day, and they said oh it’s probably Eustachian tube issues. By Thursday it still wasn’t better so I went to the ER. Once again they thought it was Eustachian tube issues but said he would do a CT to put my mind at ease. Well they discovered a mass on my right side and said they were sending me to a bigger hospital to do an MRI. When we arrived they admitted me to ICU & said I had a tumor and it needed removed as it was on my brain stem and it was large for this type of tumor (3.6x 2.2 cm)and had likely been there my whole life. Friday morning I had the tumor removed. I think my husband said it was about 4 or 5 hours. It was benign. After recovery in ICU I was sent to the Neuro floor to recover and on March 3rd had a tonic clonic seizure. After doing another CT they found a blood clot and bleed on the opposite side of my brain as the tumor and sent me back to ICU and started blood thinners and anti seizure meds. After a few days in there I went back to Neuro floor for a few days then to inpatient rehab for a week. 3 weeks total in hospitals. Been home for 6 days now. I have zero hearing in right ear, & facial paralysis on right side. Some vision loss in right eye. Will be seeing a neuro optometrist in a few weeks to address that. And I have an appt to see an audiologist. Due to seizure I’m not supposed to drive for 6 mo. Balance issues are being worked on with PT. Day by day right now.

@ashultz09, my goodness. You packed quite an ordeal into one short paragraph. I can hardly imagine what you've been through and what lies ahead.

How are you doing today?