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

Posted by Tracy Lynne Daley @tracylynnedaley72, Jul 23, 2015

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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

I had surgery 4 months ago for acustic neuroma

REPLY
@rosesareredmylove2016

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.

Jump to this post

Hi rose. I had surgery nov 23rd and i found mine by having vertigo and hearing loss. Im still battling balance and nauseu.. i life has changed, i was very active and now i cant walk a straight line. Its crazy how things can change so quickly

REPLY
@katfred

I was diagnosed 2 months ago and im suppose to have surgery this week

Jump to this post

Im sorry im just now responding to this. I found out i had an acustic neuroma after years of complaining my head hurt and ear always hurting.. i came down with bad vertigo in which i could only crawl on the floor and lost my hearing. I drove to e.r and demanded a m.r.i and after finally convincing the e.r doctor. We had m.r.i done and 2 hours later he came to my room and said yes, i have a brain tumor. I wasnt shocked because my brain was telling me something was wrong for years

REPLY
@rosesareredmylove2016

Hi Katfred... I was equally shocked when my ENT told me I had a 3.5centimeter brain tumor pushing in my brain stem.... I went to my doctor with an Earache...
I hope all is well with you...???

Jump to this post

Im almost 5 months out of surgery and im still sick and dizzy. Definelty wont be returning to work any time soon

REPLY
@katfred

I had surgery 4 months ago for acustic neuroma

Jump to this post

Hello:
I has an Acoustic Neuroma removed from my Brain Stem 3 years ago March 10,2014, I still have issues with imbalance due to hearing loss in my left ear from the tumor surgery....Theres good days and bad days...

REPLY
@cynaburst

Rose - My AN was about the same size as yours and I had hydrocephalus also. Did you get a shunt for that? I got a VP shunt a week or so before they removed my tumor. Then, I had a 7 hour surgery to remove the tumor. I was very lucky that they were able to remove the whole tumor without leaving any behind. However, I do still have the shunt for life.

I was also very lucky not to be left with serious deficits besides the loss of hearing in my right ear. My surgeries were a little more than 14 years ago, and I am doing great. Very grateful to my skillful surgeons.

Jump to this post

Hey CynaBurst:
I also had Hydrocephalus.And had a shunt in my head until after my surgery. My surgeon removed it before I left the hospital. I have 2 percent of the tumor still on my brain stem. I get yearly MRI to see if its growing...Every surgeon is different, as every tumor is different. Some days are a challenge. Others a Blessing...Hope all is well in your life...

REPLY
@rosesareredmylove2016

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.

Jump to this post

Hello Katfred:
I had No signs at all of having a brain tumor. No hearing loss, No headaches, no imbalance issues. So when I went in and my ent found a tumor. Well shock was not the word I felt. Unbelievable was more like it... Im getting better as far as walking straight and doing more. Ive just slowed down a bit.Im still active, but Ive changed how I do things now...

REPLY
@rosesareredmylove2016

Hi Katfred... I was equally shocked when my ENT told me I had a 3.5centimeter brain tumor pushing in my brain stem.... I went to my doctor with an Earache...
I hope all is well with you...???

Jump to this post

Hello Katfred
Yes life changes after brain surgery, thats for sure. Just remember..One moment at a time....I do eye exercises and I do yoga and it helps a lot. I used to run, but ha,ha, when ya run into things , well NOT a good idea..I'm way to a active to let this tumor kick my butt any longer. Ive got 2 % still on my brain stem....
I hope you feel better soon. Try new things, see what works for you...

REPLY
@katfred

I had surgery 4 months ago for acustic neuroma

Jump to this post

How are you doing since your surgery, Katfred? What has the recovery been like for you?

REPLY

Well.. healing is slow for me and its hard to have to take a step back in life. Some reason my right side of my brain just isnt compensating for left side yet. Learning to be patient is huge for me because i was determined to go back to work right after surgery. I work for Aldi and if anyone has been to an Aldi, ya know we have to work at fast pace and unload trucks. So, because of no light duty there, im off work until i can perform my job. Long story short is. Almost 5 months out and im still hanging in there but im determined to get back someday

REPLY
Please sign in or register to post a reply.