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

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

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.

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.

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.

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 Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very scary indeed. I went in to my doctor with an earache. They gave me 2 weeks of antibiotics . After that 2 weeks the side of my head still hurt and I was loosing balance. I went back and was sent to a ENT who did an ear biopsy, nasal passage biopsy and an MRI in a 3 week period.
The biopsy showed nothing as well as the nasal scan. But the MRI came back showing a 3.4 centimeter tumor in my ear canal and growing and pushing my brain stem in too the point that they saw Hydrocephalus(water on my brain). I had no headaches after the earache no pain or dizziness , nor imbalance. There were no symptoms at all.
Three weeks later I met with my surgeons and neurosurgeons and they explained the surgery to me and my children. It was a scary time, BUT I have a daughter who is an RN and any questions I didn't know to answer she did, and by the time my surgery was scheduled, we had all our answers and were as prepared as we could be.
I was diagnosed February 9, 2014, and my surgery was scheduled for March 10, 2014. I am allergic to a lot of the Anastasia drugs they give people when in surgery, so I had to make many scheduled appointments to the neurosurgeons for testing. My surgery was 12 hours. In this 12 hour period I had 4 surgeons and neurosurgeons flip flopping thru my surgery. When one completed their part they came out and updated my daughter so she could update my family as too progress. It took the full 12 hours.
the amazing part is with this surgery it was non cancerous and they scraped on my nerves for 12 hours and needed to leave 2% of the tumor on my brain stem or it would have severed nerves for my face and eye. I am 2 years since this surgery and I still need to see neurosurgeons for MRI and testing. I have imbalance due to the hearing loss in my left ear where the surgery was performed. Things that never bothered me before do now, my balance is still off and will always be off. I just need to adjust my employment and life to the after effects of having needed brain surgery.
Every day is a challenge, but I by the Grace of the Good Lord am alive.