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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.

angelmema | @angelmema | Jul 8, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've been having about balance and headache. My hearing gradually went away for a year and a half. It can't be helped with my hearing aid any more. I need information about all the options for the future. I'm70 years old and in otherwise great health.

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I don't have appointment with a neurosurgeon till September. He's the head of the team and the best in Florida they say. I guess that's why there's such a long wait.

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EES1 | @ees1 | Jul 8, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've been having about balance and headache. My hearing gradually went away for a year and a half. It can't be helped with my hearing aid any more. I need information about all the options for the future. I'm70 years old and in otherwise great health.

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Where are you going?

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angelmema | @angelmema | Jul 8, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've been having about balance and headache. My hearing gradually went away for a year and a half. It can't be helped with my hearing aid any more. I need information about all the options for the future. I'm70 years old and in otherwise great health.

Jump to this post

Dr. Antonelli at Shand's in Gainsville Fl.

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angelmema | @angelmema | Jul 8, 2018
In reply to @angelmema "I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've..." + (show)
@angelmema

I have just been diagnosed with a small acoustic neuroma and it explains the symptoms I've been having about balance and headache. My hearing gradually went away for a year and a half. It can't be helped with my hearing aid any more. I need information about all the options for the future. I'm70 years old and in otherwise great health.

Jump to this post

Shand's in Gainsville Fl.

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dgosney23 | @dgosney23 | Jul 8, 2018

I have after procedure it's all good called Drs .I was at low moment I'm good now still hurt but I think I'm gonna be in pain for awhile I think

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 2018

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

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6 replies
estherhg | @estherhg | Jul 8, 2018
In reply to @hopeful33250 "Hello @dgosney23 I would like to add my welcome to you as well! You mention having..." + (show)
@hopeful33250

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

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About 5 years ago, realized that hearing on right ear was diminished. Team of doctors; neurosiurgeon, radiation Doctor and one more. I had Gamma Knife radiation. Had no pain, only hearing loss. Tumor has been shrinking.

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dgosney23 | @dgosney23 | Jul 10, 2018
In reply to @hopeful33250 "Hello @dgosney23 I would like to add my welcome to you as well! You mention having..." + (show)
@hopeful33250

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

Jump to this post

Hello all I think I'm ready to tell my story as well as share my pain a lil.I was diagnosed may 2018 with a very large vestibular schwana (4cm)and July 2nd I had it removed (they got all but 2percent).It is a long process I was on the table more than 12 HR. I tell you I didn't go in scared ,or worried about anything that's the kind of person who I am.. The after affects well that different for every person for me it's bad as I had balance hearing...I think the most annoying Is the fevers , headaches and facial paralysis and ringing in my ears but I'm dealing.My stitches come out Friday.That is how new this is for me. The surgery ultimately saved my Life..It's an up and down process and everything is not roses but it is doable

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angelmema | @angelmema | Jul 10, 2018
In reply to @hopeful33250 "Hello @dgosney23 I would like to add my welcome to you as well! You mention having..." + (show)
@hopeful33250

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

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Thanks for the information update. I was also diagnosed in May but I can't get an appointment till September. I appreciate all of your honest details. I'm eagerly awaiting the time when I can post updates. God bless you as you live with your"new norm".

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2018
In reply to @hopeful33250 "Hello @dgosney23 I would like to add my welcome to you as well! You mention having..." + (show)
@hopeful33250

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

Jump to this post

@dgosney23

Congratulations on getting up the courage to share your story! As you can see from @angelmema post it has helped her!

I hope you continue to feel better and keep up that great attitude of yours. I find encouragement from reading your posts!

Please keep in touch, I look forward to hearing from you again,

Teresa

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