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.

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@rose4622

Thanks for sharing Vicki. My surgery is September 10. I am 68 years old and my AN is 3.3 and appears to have cysts attached. Hoping no complications. I don't do well with anesthesia. I have read alot of patient experiences, some positive,some quite negative. I trust that i have 2 of the most experienced surgeons and a strong faith in God. My family is also very supportive. This helps alot.

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Keeping you in prayer for a successful surgery. Keep the Faith. Jesus never fails.

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I just had this surgery on June 8th. Still dealing with dizziness daily. Been off work to almost 3 months. I will say, everyday isn't easy, but you do the best you can. My surgery was almost 8 hours long. All I know is that the doctors hadn't quite seen a case like mine. I lost complete hearing in my right ear. Actually going for hearing aides tomorrow. Going back to work in 2 weeks. Started driving small distances about 2-3 weeks ago. If I can help let me know. Wish I could find someone who has had surgery and could tell me how things progress. Best wishes.

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Sounds as if you are doing well! I can only tell you about my progress. Had my surgery in 1992. Lost my hearing in my left ear. Hearing aids wouldn't help in that ear. Was back at work and driving a month later. I still have balance issues so I am careful about situations where I could fall. If I start to fall I'm not able to react and catch myself so no ladders! My nose still runs when I eat! Messed up nerves from the surgery! Small problems! I'm now 83 still teaching at Carnegie Mellon University, and working in my consulting engineering practice! All is good! Wish you the best! Thank God for Dr. Harner/ Dr. Utz and Mayo!

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Hello @hoosier

I appreciate your encouraging post about your post-surgery experience at Mayo. That is wonderful that you are still teaching and working as a consultant.

You have mentioned some the side-effects you have had post-surgery, but could you share with us some ways that the surgery improved your life?

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@cynaburst

I had an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?

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I just had surgery for the same thing, 3 months ago. Can you tell me how you progressed. I am still dizzy and don't feel like I did before surgery. Just wonder how months after surgery are. Is there a time frame when things get better.Do some symptoms stay with you. Thanks for any light you can shed. Vicki

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@vickid117

I just had this surgery on June 8th. Still dealing with dizziness daily. Been off work to almost 3 months. I will say, everyday isn't easy, but you do the best you can. My surgery was almost 8 hours long. All I know is that the doctors hadn't quite seen a case like mine. I lost complete hearing in my right ear. Actually going for hearing aides tomorrow. Going back to work in 2 weeks. Started driving small distances about 2-3 weeks ago. If I can help let me know. Wish I could find someone who has had surgery and could tell me how things progress. Best wishes.

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It depends on the size of the tumor and every patient that I hear their journey is different. I acoustic Neuroma brain tumor was a little under a 4cm

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@hopeful33250

Hello @hoosier

I appreciate your encouraging post about your post-surgery experience at Mayo. That is wonderful that you are still teaching and working as a consultant.

You have mentioned some the side-effects you have had post-surgery, but could you share with us some ways that the surgery improved your life?

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Would not be here had I not had the surgery! You, Mayo Drs. saved my life! We had been coming to Mayo every 2 years for a check up for several years when Dr. Utz found my tumor. I had lost some of my hearing in my left ear and checking further they found the tumor.
Strange fact, my mother and her mother both died from a brain tumor at the age i was when they found mine! Back then there was no way to find out what kind of a tumor they died from so no way to tell if genetic. Our decision to be pro-active with our health care is the reason I'm here today! Thanks to the wonderful Dr's/ staff at Mayo!

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Great! Which drs? Which campus?

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I was at Rochester! Probably all of my Dr's are gone. That was in 1992. Dr. Harner had written to book on the surgical procedure! Sure there are equally as good or better Dr's there today! There just aren't as good hospitals and staff around!!!

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@rose4622

Yes I will. The Acoustic Neuroma is 3.3 cm and is putting pressure on the brain stem. That is what is causing pain I think. Also having balance problems and loss of all but 10% hearing in my right ear. I will be so glad when this surgery is behind me!

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Hello @rose4622

As I recall you were having your surgery on September 10. Just a note to let you know that I've been thinking and praying for you. When you feel up to posting I would enjoy hearing from you.

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