1. < Brain Tumor

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 | Sep 20, 2018
In reply to @rose4622 "It was a possibility to have headaches or awhile. I will be getting a post op..." + (show)
@rose4622

It was a possibility to have headaches or awhile. I will be getting a post op MRI next week. We will see if the brain is moving back into place.

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@rose4622

The post-op MRI sounds like a great idea. I'm so glad to hear that you are headed home this weekend.

I was especially interested in hearing you say how (regarding balance) the "the left side appears to be helping with loss of the right" I find that just amazing!

Just wondering if anyone else has found that one side of the brain helps compensate for the other side?

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rose4622 | @rose4622 | Sep 25, 2018

I am now 2 weeks post retrosigmoid craniotomy.. Did one week rehab and was discharged. Home health has not followed up yet. Today will be the first day I will be alone all day. A little Scary!

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1 reply
rose4622 | @rose4622 | Sep 25, 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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Vici I understand about wishing I was like I was preop. I am 2 weeks preop and expected to feel better but instead I feel worse. My gut is so messed up from all the drugs I took and still taking. Home health is coming today. Hoping to get some tips to begin feeling better.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 25, 2018
In reply to @rose4622 "I am now 2 weeks post retrosigmoid craniotomy.. Did one week rehab and was discharged. Home..." + (show)
@rose4622

I am now 2 weeks post retrosigmoid craniotomy.. Did one week rehab and was discharged. Home health has not followed up yet. Today will be the first day I will be alone all day. A little Scary!

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It is so good to hear from you, @rose4622. I'm sure that it is a little scary to be by yourself today as you have been used to having lots of people around to help you.

How are you feeling? Is your balance getting better now?

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1 reply
rose4622 | @rose4622 | Sep 25, 2018
In reply to @hopeful33250 "It is so good to hear from you, @rose4622. I'm sure that it is a little..." + (show)
@hopeful33250

It is so good to hear from you, @rose4622. I'm sure that it is a little scary to be by yourself today as you have been used to having lots of people around to help you.

How are you feeling? Is your balance getting better now?

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Balance is better. Digestion is giving me lots of pain. Don't know how to eat and nothin tastes good.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2018

@rose4622
I'm glad that your balance is better, that is great! Digestive problems might be related to the extra meds you are taking post-surgery. I tend to lose my appetite when I'm taking new meds.

How was everything yesterday while you were home alone for the first time? Did you have any major challenges?

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1 reply
rose4622 | @rose4622 | Sep 26, 2018
In reply to @hopeful33250 "@rose4622 I'm glad that your balance is better, that is great! Digestive problems might be related..." + (show)
@hopeful33250

@rose4622
I'm glad that your balance is better, that is great! Digestive problems might be related to the extra meds you are taking post-surgery. I tend to lose my appetite when I'm taking new meds.

How was everything yesterday while you were home alone for the first time? Did you have any major challenges?

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No major challengers. First appt with home health care.

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rose4622 | @rose4622 | Oct 3, 2018
In reply to @rosesareredmylove2016 "Hi Donna: I certainly understand how scared you are. i was diagnosed with an acoustic neuroma..." + (show)
@rosesareredmylove2016

Hi Donna:<br />
I certainly understand how scared you are. i was diagnosed with an acoustic neuroma in 2014 after going in to my doctor with an ear ache. <br />
I also had hydrosphelis (water on my brain) that my doctor was concerned about. <br />
I underwent a 12 hour surgery on March 10, 2014. The tumor was benign, Thank the LORD..<br />
Since the tumor was growing in my inner ear, i lost hearing on my left side. i have imbalance issues now and each day is different and a challenge.<br />
My eyes get very tired and I can’t do the jobs i used too.<br />
the surgery was successful, as i am still here even tho I was left with disabilities I feel very blessed.<br />
Don’t stress out. The neurosurgeons are excellent…ASK Many questions…Don’t go into the surgery with questions remaining…<br />
I will say prayers for you, don’t stress out.Ask your neurosurgeons how many of these surgeries they’ve done. Specific questions will get you the best answers.<br />
If you need some moral support just send me a note here on the web site and I will do my best to tell you what you’dl ike to know. All i can do is tell you what i went thru and how my life is now.<br />
I do know without the surgery, the tumor will continue to grow and will kill you.<br />
Rose

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Hi Rose
I am 3 weeks post surgery. I had a retrosigmoid craniotomy for a 3.3 cm acoustic Neuroma. I went to Mayo Clinic in AZ. It was the best place to go and I was treated very well. If you have any questions please feel free to ask me.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2018

Hello @rose4622

Nice to see your post. How is your recovery coming along? Are you beginning physical therapy yet? Is your balance continuing to improve? How is the home health care working out for you?

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1 reply
rose4622 | @rose4622 | Oct 3, 2018
In reply to @hopeful33250 "Hello @rose4622 Nice to see your post. How is your recovery coming along? Are you beginning..." + (show)
@hopeful33250

Hello @rose4622

Nice to see your post. How is your recovery coming along? Are you beginning physical therapy yet? Is your balance continuing to improve? How is the home health care working out for you?

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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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