Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
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 an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?
I thought I would take a minute to check in to see if you received a notification about @cynaburst‘s message to you. Would be great to help connect 2 people with a similar and very rare diagnosis.
Tracy, have you had surgery since we last heard from you?
Hello- looking for info as well about acoustic neuroma. I have MS and get an yearly MRI. The found it last year but did not inform me it was 3mm. This year it is 4-6mm. I am in the information gathering stage. Thank you
Hi @jjanes3, I’m glad you found us here at Connect. Welcome.
Here is some basic information from the Mayo Clinic to help you get started with gathering information http://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/basics/definition/con-20023851
And @tracylynnedaley72 and @cynaburst can also add their experiences.
What course of treatment is being recommended Jjanes?
Connect Community Director
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.
Thank you for sharing your experience with the group here on Connect, @rosesareredmylove2016. That is quite the journey and I’m glad you’re here to tell us about it!
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.
I was diagnosed with this same tumor in 2014 after going to my Doctor with an ear ache. My surgeons scraped on my nerves for 12 hours to remove 98%, I still have 2% on my brain stem due to them NOT anting to damage my nerves. Its been 2 years since my surgery and I have imbalance and eye issues. My nuerosurgeon says I will always have these issues, But he also says it could get better once my nerves re-generate. Theres always the possibility it could get worse. I am praying for better, not worse as this surgery effected every part of my life as is.
Hello there. I didn’t get a shunt put in until just before my surgery, than I had a 12 hour surgery to try and remove the tumor. I lost hearing in my left ear, I was also very lucky. It was non-cancerous, and the surgeons were amazing. The shunt did its job the day of surgery, I went home 3 days later when the neurosurgeons released me from ICU. I need an MRI every year now to make sure the 2% they needed to leave isn’t growing. But no shunt, just a dip in my skull where it was inserted the day of surgery. My balance is still off and noise bothers me some days. otherwise I’m doing good. Physical therapy helped me a lot and I do eye exercises every day.I have my good days and a few bad.
Thank You, and I am happy I found this group. It helps me to know I’m not alone in this journey after my surgery. I have GREAT neurosurgeons, and they did an amazing job. I am very thankful every day for all the good things in my life.It has been an amazing journey and I am thankful I am here to tell about it.