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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2018
In reply to @rose4622 "Hi Teresa Physical therapy is a challenge. It has triggered so much pain in my head...." + (show)
@rose4622

Hi Teresa
Physical therapy is a challenge. It has triggered so much pain in my head. I also have a nurse 2x a week
She had helped me organize my meds and I have a good speech therapist. My mouth still droops some but I can drink out of a cup now without dribbling. Being home with hubby os good. So frustrating that he has to do housework and cooking. Wish i could speed this recovery up but cant. I am grateful to be alive but need better pain control to really enjoy life. Going to talk to my surgeon today.

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Thanks for the update, @rose4622. I hope you do get some better pain control. It does sound like you are getting some good support. Speech therapy is a great thing. I've had it several times after vocal cord surgery. Be patient with yourself, this will not resolved itself quickly, so take it easy and allow yourself to depend on others as much as possible.
Will you post an update after you see your surgeon today?

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1 reply
rose4622 | @rose4622 | Oct 3, 2018
In reply to @hopeful33250 "Thanks for the update, @rose4622. I hope you do get some better pain control. It does..." + (show)
@hopeful33250

Thanks for the update, @rose4622. I hope you do get some better pain control. It does sound like you are getting some good support. Speech therapy is a great thing. I've had it several times after vocal cord surgery. Be patient with yourself, this will not resolved itself quickly, so take it easy and allow yourself to depend on others as much as possible.
Will you post an update after you see your surgeon today?

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I have to call and leave a message for him. I am in NM. I will give an update when I hear back though.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2018
In reply to @rose4622 "I have to call and leave a message for him. I am in NM. I will..." + (show)
@rose4622

I have to call and leave a message for him. I am in NM. I will give an update when I hear back though.

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Sounds good, @rose4622. I'll look forward to hearing from you when you have more information.

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rose4622 | @rose4622 | Oct 5, 2018

I got a call back from my doctors nurse. She insisted that I must make a trip to Phoenix for my post surgery MRI and visits with my surgeons. I told her I am not well enough to travel right now but will schedule asap.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2018
In reply to @rose4622 "I got a call back from my doctors nurse. She insisted that I must make a..." + (show)
@rose4622

I got a call back from my doctors nurse. She insisted that I must make a trip to Phoenix for my post surgery MRI and visits with my surgeons. I told her I am not well enough to travel right now but will schedule asap.

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@rose4622
You will undoubtedly feel better as time goes on, Rose, and then you can make the trip. How far it is to Phoenix?

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1 reply
rose4622 | @rose4622 | Oct 5, 2018
In reply to @hopeful33250 "@rose4622 You will undoubtedly feel better as time goes on, Rose, and then you can make..." + (show)
@hopeful33250

@rose4622
You will undoubtedly feel better as time goes on, Rose, and then you can make the trip. How far it is to Phoenix?

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It is usually 7 hours but I have to stop a lot so it takes about 8.

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1 reply
rose4622 | @rose4622 | Oct 10, 2018
In reply to @rose4622 "It is usually 7 hours but I have to stop a lot so it takes about..." + (show)
@rose4622

It is usually 7 hours but I have to stop a lot so it takes about 8.

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I've scheduled an MRI here and will send disc to my surgeons in AZ.

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1 reply
rose4622 | @rose4622 | Oct 16, 2018
In reply to @rose4622 "I've scheduled an MRI here and will send disc to my surgeons in AZ." + (show)
@rose4622

I've scheduled an MRI here and will send disc to my surgeons in AZ.

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Having a problem with my eye today. It won't close. Has to do with facial nerve damage. Called Mayo about it and was told to see my eye doctor then schedule with surgeons at Mayo. Talked to husband and he can take me to Phoenix Nov 1. Will call scheduling at Mayo tomorrow.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 17, 2018

Hello @rose4622

I'm sorry to hear about your eye not closing, I'm sure that must be worrisome for you. I am glad that you can get in on November 1. Will you try to see an eye doctor before then? Will you keep me posted on how you are doing?

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1 reply
rose4622 | @rose4622 | Oct 17, 2018
In reply to @hopeful33250 "Hello @rose4622 I'm sorry to hear about your eye not closing, I'm sure that must be..." + (show)
@hopeful33250

Hello @rose4622

I'm sorry to hear about your eye not closing, I'm sure that must be worrisome for you. I am glad that you can get in on November 1. Will you try to see an eye doctor before then? Will you keep me posted on how you are doing?

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I saw my eye Dr yesterday. She gave me salve, eye drops and told me to wear a patch over the eye. I have been calling Mayo all day but haven't gotten thru yet to scheduling. 😥

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