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.

@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.

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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.

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

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@katfred

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

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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?

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@katfred

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

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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?

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@katfred

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

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hello; Don’t stress out on the surgery, their great surgeons. I had surgery 2 years ago after going to my primary care with an earache. I found out I had a 3-5 centimeter tumor pushing on my brain stem. No headaches, no imbalance, no dizziness.. All went well, After effects are weird, just take it slow…..

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@katfred

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

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2 months ago i went to e.r. because i lost hearing in both ears and i was so dizzy. I was diagnosed with vertigo. Couple weeks went by and then vertigo came back and i was walking into things. Doctors decided to do an mri. And they said i have vestibular schwannoma. Im like what? I never heard of it before. So i was refered to uw hospital in madison.

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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…???

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@katfred

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

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Hi cynaburst… Your surgery was 15 years ago you said??? How long did it take you to feel somewhat normal after your surgery? My head still feels like its floating, theres days my balance is so off…I feel sometimes like i have an ocean in my head….I still have 2% of the tumor on my brain stem…Did your surgeons get all of yours???

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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

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@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

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Wow…I’m sorry to hear they moved your surgery so far out…Why did they do that if your balance is so bad and you can no longer work from this happening???

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Hey Tracey: I was diagnosed with an acoustic neuroma 2 years ago. I went into my doctor with an earache. Boom 2 weeks later was at an ENT, and diagnosed with this type of tumor. At the time I had no idea what an acoustic neuroma was.I’ve learned a lot since my surgery. I wouldnt want anyone to need to undergo this… I had a 12 hour surgery March 10th 2014.. After the surgery I now have No hearing on my left side. Tumor was on my hearing nerve and in my ear canal, so my hearing went. I have 2% still on my brainstem nerves. The after effect of the surgery, left me imbalanced, my head on a rainy day feels like its floating. windy days i have to be careful because I feel off balance. Its weird, scarrey and i have NO clue whats in the future,,,….I just know I am alive, it was NON cancerous, it could grow. And I thank GOD for every day I am alive…

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@katfred

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

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I feel pretty normal most of the time, but there are occasions every year or two where I feel floaty or weird for a few weeks, and then it will go away again. Every time I worry that I am having a regrowth. And yes, they did get my whole tumor.

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