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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.

hoosier | @hoosier | Sep 6, 2018

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2018
In reply to @rose4622 "Yes I will. The Acoustic Neuroma is 3.3 cm and is putting pressure on the brain..." + (show)
@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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1 reply
rose4622 | @rose4622 | Sep 18, 2018
In reply to @hopeful33250 "Hello @rose4622 As I recall you were having your surgery on September 10. Just a note..." + (show)
@hopeful33250

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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Hi Terssa

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1 reply
rose4622 | @rose4622 | Sep 18, 2018
In reply to @rose4622 "Hi Terssa" + (show)
@rose4622

Hi Terssa

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I did have my surgery the 10th. It was 10 hours long. My surgeons were amazing. They got 80-90% of the tumor resected. I've had a few complications: afib and pnuemonia, but no tpermanent ones.
I am still in rehab but hope to go home the 26th. 😃

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2 replies
vickid117 | @vickid117 | Sep 18, 2018

Hi. I've just had acoustic neuroma surgery June 8th, 2018. I lost complete hearing in my right ear. My balance has been affected as well. I have hearing aides which take the sounds from my right ear, to my left ear. Trying to get used to them. I feel safetest when I'm behind the wheel of a car. My dizziness seems to be calm when I sit still.I'm starting to do more around the house. Been cutting grass a little, with rest breaks. Some days I honestly wish things were like they were before. I realize the tumor would have kept growing possibly affecting facial nerves as well as other issues. I miss not hearing like I did, and this dizzy feeling. I don't mean to sound ungrateful. I thank God for being with me through the whole ordeal. If I can help anyone, than it was worth it.

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2 replies
vickid117 | @vickid117 | Sep 18, 2018
In reply to @rosesareredmylove2016 "hey Cynaburst. I had a shunt a minute before my surgery. Than it was out for..." + (show)
@rosesareredmylove2016

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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Rose, can you tell me how the symptoms are months after surgery. Its only been 3 months, but I like to know what the future could hold. I appreciate your feedback to those who have written on here.Dizziness and Balnce are an everyday occurrence.

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hoosier | @hoosier | Sep 18, 2018
In reply to @vickid117 "Hi. I've just had acoustic neuroma surgery June 8th, 2018. I lost complete hearing in my..." + (show)
@vickid117

Hi. I've just had acoustic neuroma surgery June 8th, 2018. I lost complete hearing in my right ear. My balance has been affected as well. I have hearing aides which take the sounds from my right ear, to my left ear. Trying to get used to them. I feel safetest when I'm behind the wheel of a car. My dizziness seems to be calm when I sit still.I'm starting to do more around the house. Been cutting grass a little, with rest breaks. Some days I honestly wish things were like they were before. I realize the tumor would have kept growing possibly affecting facial nerves as well as other issues. I miss not hearing like I did, and this dizzy feeling. I don't mean to sound ungrateful. I thank God for being with me through the whole ordeal. If I can help anyone, than it was worth it.

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You are doing really well! Glad to hear it! Keep on keeping on! Hoosier1

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hoosier | @hoosier | Sep 18, 2018
In reply to @rose4622 "I did have my surgery the 10th. It was 10 hours long. My surgeons were amazing...." + (show)
@rose4622

I did have my surgery the 10th. It was 10 hours long. My surgeons were amazing. They got 80-90% of the tumor resected. I've had a few complications: afib and pnuemonia, but no tpermanent ones.
I am still in rehab but hope to go home the 26th. 😃

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Good to hear that you are doing well! Have been wondering! Will be good to go home! Keep us posted as you recover!

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2018
In reply to @rose4622 "I did have my surgery the 10th. It was 10 hours long. My surgeons were amazing...." + (show)
@rose4622

I did have my surgery the 10th. It was 10 hours long. My surgeons were amazing. They got 80-90% of the tumor resected. I've had a few complications: afib and pnuemonia, but no tpermanent ones.
I am still in rehab but hope to go home the 26th. 😃

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Hello @rose4622
How wonderful to hear that your surgeons were amazing and that so much of the tumor was resected. I am so pleased for you!
Take care and I'll keep praying for you!😊

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1 reply
rose4622 | @rose4622 | Sep 18, 2018
In reply to @hopeful33250 "Hello @rose4622 How wonderful to hear that your surgeons were amazing and that so much of..." + (show)
@hopeful33250

Hello @rose4622
How wonderful to hear that your surgeons were amazing and that so much of the tumor was resected. I am so pleased for you!
Take care and I'll keep praying for you!😊

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Thanks. Hoping the headaches ease off soon.

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