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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
Brain Tumor | Last Active: Dec 20, 2022 | Replies (488)Comment receiving replies
I recently was diagnosed with an Acoustic Neuroma. I am seeing Dr Thompson in Omaha NE. I am scared to death how this is going to turn out. I have lost a lot of my hearing in my right ear now.
Today I am also dizzy. I have an appointment with the Dr on the 17th for another MRI and a simulation. He is planning to do a one time radiation treatment the following week. What have you found out about this tumor?
This is really bothering me. Donna
Replies to "I recently was diagnosed with an Acoustic Neuroma. I am seeing Dr Thompson in Omaha NE...."
Donna,<br />
<br />
On a side note, there are two brain tumor support groups in Omaha; one is<br />
held monthly at Immanuel and the other one is held bi-monthly at Nebraska<br />
Medicine. I would be happy to provide you with additional information<br />
about thee groups. While these groups are not solely focused to just<br />
Acoustic Neuroma Brain Tumors, they do provide a lot of helpful information<br />
about how to deal with brain tumors in general.<br />
<br />
*Tracy Lynne Daley*<br />
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
Donna3
When I went to Mayo Clinic I was offered the Radiation Surgery. It is supposed to stop the acoustic neuroma from growing any bigger. It works well for some people but not at at all for others. Because of this I decided against it. I wanted this thing completely out of my body. I chose durgery. My acoustic neuroma tumor was still small enough to remove easily. I didn’t want further issues than I already have been experiencing. Hypothyroidism neuropathy dead in the left ear 45% hearing in the right ear. I didn’t want paralysis of my face or worse death. So radiation was a no for me. Ad long as they could taint all out I wanted surgery. This is something you need to choose for you. If your doctor doesn’t perform surgery well and you prefer that then go get another opinion. I did and the out come has been fantastic!!
Liz in Illinois I’m pro surgery. By the way I’m 61 years old and have a heart condition but Mayo Clinic took great care of me
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Donna,<br />
<br />
Thank you for your message. I am sorry to hear about your the problems you<br />
are experiencing.<br />
<br />
I can understand about being dizzy. I have bad vertigo laying down and my<br />
balance is majorly off a lot of the time.<br />
<br />
I am not a doctor, but compared to a malignant brain tumor, Acoustic<br />
Neuromas are a lot easier to handle. At least, you know that they cannot<br />
spread like with malignant brain tumors. I have heard a lot of people have<br />
good results.<br />
<br />
In my case, I had two one-time radiation treatments which were almost two<br />
months apart.<br />
<br />
What exactly is simulation? Is that an MRI with simulation or something<br />
else? I have never heard of this procedure.<br />
<br />
Acoustic Neuromas can occur on their own or due to genetic factors. Mine<br />
was a cause of genetic factors and rights now I am having a recurrence.<br />
They have not determined the best course of action yet.<br />
<br />
Who is Dr. Thompson? Is he with Nebraska Medicine; CHI Health; or<br />
Methodist Health System?<br />
<br />
I have done a lot of research about Acoustic Neuromas. If you were not<br />
aware of it, there is a national organization called Acoustic Neuroma<br />
Association that provides information specifically about Acoustic<br />
Neuromas. In fact, next week happens to be Acoustic Neuroma Awareness Week<br />
[May 8-14, 2016]. The Acoustic Neuroma Association can be found on the<br />
following webpage:<br />
<br />
https://www.anausa.org/<br />
<br />
I would be happy to provide you with additional information about Acoustic<br />
Neuromas. Maybe somehow we could email either other. If you do not wish<br />
to do so, I understand.<br />
<br />
*Tracy Lynne Daley*<br />