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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.

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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)
Profile picture for Teresa, Volunteer Mentor @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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rose4622 | @rose4622 | Sep 18, 2018
In reply to @rose4622 "Hi Terssa" + (show)
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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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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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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)
Profile picture for rosesareredmylove2016 @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)
Profile picture for vickid117 @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)
Profile picture for rose4622 @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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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)
Profile picture for rose4622 @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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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)
Profile picture for Teresa, Volunteer Mentor @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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2018
In reply to @rose4622 "Thanks. Hoping the headaches ease off soon." + (show)
Profile picture for rose4622 @rose4622

Thanks. Hoping the headaches ease off soon.

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@rose4622
Were the headaches an expected side-effect with this kind of surgery?

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rose4622 | @rose4622 | Sep 19, 2018
In reply to @hoosier "Good to hear that you are doing well! Have been wondering! Will be good to go..." + (show)
Profile picture for hoosier @hoosier

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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I am in a rehab facility near my home. They are filling my days with activities, neurological land phys around my disabilities. The food here is not good for me. I had an allergic reaction to food yesterday. I would like to stay here a few more days but my gut is so enflamed with food and drugs that I may need to check out early. Or have family bring in food I'm not allergic to. I was in so much pain last night. I had to beg for benedryl its the only thing that helps with allergic reactions to food.

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