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.

@rose4622

Did anyone have gamma knife after craniotomy for AN? Did you suffer any side effects from it? I have been through so much and I'm weary. I have an MRI next month and my surgeon scheduled me to see a radiologist after. I'm worried.

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Hi @rose4622,

I merged your discussion about finding others who’ve had gamma knife for AN with this discussion in the Brain Tumor group, so that you could reconnect with the members who've joined this discussion.

I can only imagine what a toll this must be taking; what are you most concerned about?

@rose4622

Did anyone have gamma knife after craniotomy for AN? Did you suffer any side effects from it? I have been through so much and I'm weary. I have an MRI next month and my surgeon scheduled me to see a radiologist after. I'm worried.

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Hello @rose4622

You have been on my mind and I'm glad that you posted. Yes, I'm sure that another procedure is not what you want to think about for the new year. I would like to invite @annedodrill44 into this discussion. Her husband had the gamma knife procedure at Mayo in Minnesota and she has shared a good report.

Did the doctor explain the purpose of the gamma knife procedure? Is it to clean up the remaining part of the tumor that was left behind after the surgery?

My husband has had 2 acoustic neuromas seven years apart removed. They have been wrapped around his brain stem on the right side.
The first one was discovered with him having balance issues and headaches. His last surgery was February 2018. Post op he had issues closing his eyelid all the way except for 1/4 “. We used several kinds of drops, ointments, and gels in his eye to keep his eye lubricated.
He also needed to wear a patch to help with light issues.
In September 2018 he was operated on by a neuro opthomologist who placed a platinum implant into his eyelid. Immediately he was able to close his eye. He will continue to have MRI’s and be monitored for re-occurance.

@rose4622

Did anyone have gamma knife after craniotomy for AN? Did you suffer any side effects from it? I have been through so much and I'm weary. I have an MRI next month and my surgeon scheduled me to see a radiologist after. I'm worried.

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@rose4622
Hi Rose:

I've been thinking about you. I hope you are doing well.
Have you made any decision yet about proceeding with the gamma knife surgery?
Wishing you well.

Does anyone have an Oligodendroglioma tumor?

Hello @user_chea8a92a

I noticed that you post periodically about your tumor. While we wait to see if others will post to you, I was just wondering: How are you feeling? Is your situation stable now? Are you having any treatments currently? Please feel free to share only as you are comfortable doing so.

@hopeful33250

@rose4622
Hi Rose:

I've been thinking about you. I hope you are doing well.
Have you made any decision yet about proceeding with the gamma knife surgery?
Wishing you well.

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I went to Mayo for MRI. It showed no regrowth. Surgeon was excited about my recovery thus far. Did not recommended GK at this time. Continuing vestibular rehab. I am so happy with my recovery so far. I am working on my anxiety that is mostly around fear of falling .

@rose4622

I went to Mayo for MRI. It showed no regrowth. Surgeon was excited about my recovery thus far. Did not recommended GK at this time. Continuing vestibular rehab. I am so happy with my recovery so far. I am working on my anxiety that is mostly around fear of falling .

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Congrats on the good news @rose4622 Woot woot!

@rose4622

I went to Mayo for MRI. It showed no regrowth. Surgeon was excited about my recovery thus far. Did not recommended GK at this time. Continuing vestibular rehab. I am so happy with my recovery so far. I am working on my anxiety that is mostly around fear of falling .

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So good to hear, @rose4622.

I'm so pleased for you! I know you did not want to face GK and I can certainly understand that. Keep working on the vestibular system and keep smiling😊

@IndianaScott

Congrats on the good news @rose4622 Woot woot!

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Thanks Scott. It's been so hard but starting to get some of my life back. I'm so thankful for that!

@hopeful33250

So good to hear, @rose4622.

I'm so pleased for you! I know you did not want to face GK and I can certainly understand that. Keep working on the vestibular system and keep smiling😊

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Thanks Teresa. I will. ☺

@kanaazpereira

Hi @rose4622,

I merged your discussion about finding others who’ve had gamma knife for AN with this discussion in the Brain Tumor group, so that you could reconnect with the members who've joined this discussion.

I can only imagine what a toll this must be taking; what are you most concerned about?

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Well yes it’s been a journey after my Brain surgery. My balance is horrid some days. My eyes get more tired if I do too much. Motion drives my head crazy. It’s been 4 years since my surgery and my nerves on the left side of my brain are still very tender . I look at it this way. It’s been an unbelievable thing that happened too me. It’s taught me a lot , and each day is a challenge. My son says after my surgery , my thinking and thought pattern is off and I know it is. Just didn’t feel anyone really noticed.

Hello: I had brain surgery in 2014 for a begine brain tumor . It was huge, 12 hour surgery and I still have 2 percent on my brain stem that causes me issues, but it’s better than the alternative. Now I have an mri once a year to make sure it’s Not growing. If it does grow and cause me issues , I will need spot radiation I’m told. Not looking forward to that . I pray each and every day it doesn’t grow. My life now after Brain surgery is difficult enough.

@rosesareredmylove2016

Hello: I had brain surgery in 2014 for a begine brain tumor . It was huge, 12 hour surgery and I still have 2 percent on my brain stem that causes me issues, but it’s better than the alternative. Now I have an mri once a year to make sure it’s Not growing. If it does grow and cause me issues , I will need spot radiation I’m told. Not looking forward to that . I pray each and every day it doesn’t grow. My life now after Brain surgery is difficult enough.

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I agree. Mine too!

Acoustic neuroma..also known as vestibular schwannoma….my tumor was a schwannoma tumor but was located on my optic nerve…it is also very rare. It was removed in 2008 but with some damage. No peripheral vision, can't use my left eye. No radiation required. Brain tumors are very scary and it is very important to have a good support group (family and friends). I wish u the best of luck

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