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 group.

@katfred

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

Jump to this post

Hi Cynaburst: I still have that 2% on my brain stem. I just had my yearly MRI, and my ENT said theres a part of the tumor that has grown minutely. I am wondering if that is not effects of the growth I am feeling…
Unfortunately they couldnt get the whole tumor, as it rests on 5 nerves on my brain stem that control my left side facial nerves, eye, …So I get a MRI every year now.

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

I was told that the e.n.t doctor and neurologist works as a team and unfortunately they are so booked . November is the earliest opening

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

@katfred where are you being treated and where do you live?

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

I live in south beloit Illinois and being treated at University of Wisconsin in Madison

REPLY

I Live in Minnesota and am treated at the UofM in Minneapolis, Dr Yuong

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

Yes my ENT and surgeon work together for schedules and surgeries….

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

@katfred The waiting can be tough. If you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

Yes, @katfred, Mayo Clinic has some outstanding AN doctors. Dr. Michael Link is terrific. If it is at all possible for you to travel, that is something you might consider. There are also some terrific AN doctors here in Los Angeles at the House Ear Institute and USC.

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

An MRI that was used to diagnose hydrocelphalis also found the acoustic neuroma.  The hearing in my right ear is gone, but other than that, no problems.   A second MRI the following year showed that the neuroma had not grown, so the decision was to leave it  alone.  Am told the surgery to remove it is rather difficult.Will have another MRI in a few months.  There is a special hearing aid that consists of a microphone in the damaged ear that sends sounds to the functioning ear.  This has been fairly helpful. 

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

Is your hydrocephalus due to your AN, or was the AN an incidental finding and you have hydrocephalus for some other reason? I have hydrocephalus as a result of my AN and had to have it removed and had a shunt inserted the week before my tumor was removed. They told me that my tumor was life threatening and had to be removed immediately but that was because it was crushing my brain stem and was also obstructing the flow of the CSF.

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

I had been ill, dizzy, unbalanced for nearly a year after becoming suddenly ill while visiting Indiana. Three days in the hospital there revealed nothing, but one of the docs suggested I get an MRI. I ignored that for quite a while and then felt worse and requested the MRI–which revealed the hydrocephalus. Seems the neuroma was just an incidental finding, and I’m perfectly happy to leave it alone unless it begins to grow.

REPLY
@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

In my case the AN was the cause of the hydrocephalus. Are they sure that is not the case in yours?

REPLY
Please sign in or register to post a reply.
  Request Appointment