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.

Cynaburst, Alumna Mentor | @cynaburst | Sep 12, 2016

In reply to @katfred "I was diagnosed 2 months ago and im suppose to have surgery this week" + (show)

I just wrote you a long reply which I lost. Have you been the the Acoustic Neuroma Association website: http://www.ANAUSA.org? They have some great information there.

Wishing you the best with your surgery. Mine was 15 years ago and but for the deafness in my right ear, I barely think about it anymore. I had a very large tumor which was compressing my brainstem, so I had it out on an emergency basis, and also got a VP shunt for hydrocephalus.

Let us know if we can help answer any questions. Where will you have surgery?

Colleen Young, Connect Director | @colleenyoung | Sep 12, 2016

In reply to @katfred "I was diagnosed 2 months ago and im suppose to have surgery this week" + (show)

Welcome to Connect @katfred. I'm glad you found us so early in your journey. I'm sure you have many questions. @tracylynnedaley72 @cynaburst @donna3 @rosesareredmylove2016 @jjanes3 have been there, and I'm confident they will help answer your questions from their experience.

Kat, how did you and your care team discover that you had an acoustic neuroma?

katfred | @katfred | Sep 12, 2016

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

rosesareredmylove2016 | @rosesareredmylove2016 | May 16, 2016

In reply to @cynaburst "Rose - My AN was about the same size as yours and I had hydrocephalus also...." + (show)

hey Cynaburst. I had a shunt a minute before my surgery. Than it was out for 12 hours. I have 2% of the tumor on my brain stem, and i get an MRI every year to be sure it has'nt grown. If it does I have to get spot radiation.I have no hearing on my left side due to the tumor and I have imbalance issues. Its not dizzyness, its like my head is floating all the time and noise is now amplified. Wind and rain, barometer changes cause issues for me.

rosesareredmylove2016 | @rosesareredmylove2016 | May 16, 2016

In reply to @colleenyoung "Thank you for sharing your experience with the group here on Connect, @rosesareredmylove2016. That is quite..." + (show)

Hey Colleen: Yes its been an experience. And I'm happy to be here...Everyday now is different..Some days can be a challenge,..

Cynaburst, Alumna Mentor | @cynaburst | May 16, 2016

In reply to @donna3 "Is there anything to make my dizziness or unbalanced feeling go away while I'm waiting to..." + (show)

I am not sure...It is possible they can give you some medication for dizziness, but I had to go through physical therapy and vestibular rehab after my surgery to remove the tumor. The tumor is located on the balance nerve, so it unfortunately does affect balance. After awhile it is possible for the other vestibular nerve to learn how to compensate, so you do learn how to cope, but unfortunately you are never quite the same as you were before.

Colleen Young, Connect Director | @colleenyoung | May 16, 2016

In reply to @donna3 "Is there anything to make my dizziness or unbalanced feeling go away while I'm waiting to..." + (show)

Great question @donna3. I moved your message to the discussion that was underway to bring @cynaburst @jjanes3 @rosesareredmylove2016 @tracylynnedaley72 into the conversation.

donna3 | @donna3 | May 12, 2016

Is there anything to make my dizziness or unbalanced feeling go away while I'm waiting to be treated for my AN ?

Colleen Young, Connect Director | @colleenyoung | May 9, 2016

In reply to @donna3 "I'm having radiation surgery to remove my tumor. I just started having dizziness and balance problems...." + (show)

@donna3, These are great questions to ask your care team. As well as the link that @tracylynnedaley72 provided to the ANA, I found this indepth article about radiotherapy as a treatment option for acoustic neuroma. http://www.acoustic-neuroma-brain-tumour.org/english/acoustic-neuroma-radiotherapy.php

rosesareredmylove2016 | @rosesareredmylove2016 | May 7, 2016

In reply to @donna3 "I'm having radiation surgery to remove my tumor. I just started having dizziness and balance problems...." + (show)

Hi Tracy: 
I can’t say how radiation will effect you.Ive not needed that yet, hopefully the 2 percent they left on my brainstem won’t grow. 
All I know is what I’ve gone thru after surgery. I have imbalance due to my loosing hearing from the tumor. Its frustrating, because before surgery I didn’t have disabilities, now I do and its pretty much effected everything I do. 
I have no idea what addition will do or how it will effect you. Sorry 
Rose