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 group.

Has anyone had radiation for their AN?
Thanks for any info
Donna

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@donna3

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

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Donna,

Thank you for your message. I am sorry to hear about your the problems you
are experiencing.

I can understand about being dizzy. I have bad vertigo laying down and my
balance is majorly off a lot of the time.

I am not a doctor, but compared to a malignant brain tumor, Acoustic
Neuromas are a lot easier to handle. At least, you know that they cannot
spread like with malignant brain tumors. I have heard a lot of people have
good results.

In my case, I had two one-time radiation treatments which were almost two
months apart.

What exactly is simulation? Is that an MRI with simulation or something
else? I have never heard of this procedure.

Acoustic Neuromas can occur on their own or due to genetic factors. Mine
was a cause of genetic factors and rights now I am having a recurrence.
They have not determined the best course of action yet.

Who is Dr. Thompson? Is he with Nebraska Medicine; CHI Health; or
Methodist Health System?

I have done a lot of research about Acoustic Neuromas. If you were not
aware of it, there is a national organization called Acoustic Neuroma
Association that provides information specifically about Acoustic
Neuromas. In fact, next week happens to be Acoustic Neuroma Awareness Week
[May 8-14, 2016]. The Acoustic Neuroma Association can be found on the
following webpage:

https://www.anausa.org/

I would be happy to provide you with additional information about Acoustic
Neuromas. Maybe somehow we could email either other. If you do not wish
to do so, I understand.

*Tracy Lynne Daley*

REPLY
@donna3

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

Jump to this post

Donna,

On a side note, there are two brain tumor support groups in Omaha; one is
held monthly at Immanuel and the other one is held bi-monthly at Nebraska
Medicine. I would be happy to provide you with additional information
about thee groups. While these groups are not solely focused to just
Acoustic Neuroma Brain Tumors, they do provide a lot of helpful information
about how to deal with brain tumors in general.

*Tracy Lynne Daley*

REPLY

You should go and check in with the ANA group either on their message board or on Facebook. There are people there who have had every kind of AN treatment. I know that Dr. Michael Link at Mayo Clinic is particularly experienced with AN if you want to visit Mayo for an opinion.

Good luck! My tumor was 14 years ago and it was a very scary time.

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@donna3

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

Jump to this post

Hi Donna:
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.
I also had hydrosphelis (water on my brain) that my doctor was concerned about.
I underwent a 12 hour surgery on March 10, 2014. The tumor was benign, Thank the LORD..
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.
My eyes get very tired and I can’t do the jobs i used too.
the surgery was successful, as i am still here even tho I was left with disabilities I feel very blessed.
Don’t stress out. The neurosurgeons are excellent…ASK Many questions…Don’t go into the surgery with questions remaining…
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.
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.
I do know without the surgery, the tumor will continue to grow and will kill you.
Rose

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I’m having radiation surgery to remove my tumor. I just started having dizziness and balance problems. Scared it will last forever. I work part time. I love to be outside. We live on an acreage not far from Spencer Iowa. I love to ride my motorcycle with my husband. I look forward to it every year and we are taking a vacation to Tennessee in July. Scared it’s going to ruin my plans. Is there anything g you can tell me about this. I’ve been reading a lot.

Donna

REPLY
@donna3

I’m having radiation surgery to remove my tumor. I just started having dizziness and balance problems. Scared it will last forever. I work part time. I love to be outside. We live on an acreage not far from Spencer Iowa. I love to ride my motorcycle with my husband. I look forward to it every year and we are taking a vacation to Tennessee in July. Scared it’s going to ruin my plans. Is there anything g you can tell me about this. I’ve been reading a lot.

Donna

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Hi Tracy:
I can’t say how radiation will effect you.Ive not needed that yet, hopefully the 2 percent they left on my brainstem won’t grow.
All I know is what I’ve gone thru after surgery. I have imbalance due to my loosing hearing from the tumor. Its frustrating, because before surgery I didn’t have disabilities, now I do and its pretty much effected everything I do.
I have no idea what addition will do or how it will effect you. Sorry
Rose

REPLY
@donna3

I’m having radiation surgery to remove my tumor. I just started having dizziness and balance problems. Scared it will last forever. I work part time. I love to be outside. We live on an acreage not far from Spencer Iowa. I love to ride my motorcycle with my husband. I look forward to it every year and we are taking a vacation to Tennessee in July. Scared it’s going to ruin my plans. Is there anything g you can tell me about this. I’ve been reading a lot.

Donna

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@donna3, These are great questions to ask your care team. As well as the link that @tracylynnedaley72 provided to the ANA, I found this indepth article about radiotherapy as a treatment option for acoustic neuroma. http://www.acoustic-neuroma-brain-tumour.org/english/acoustic-neuroma-radiotherapy.php

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Is there anything to make my dizziness or unbalanced feeling go away while I’m waiting to be treated for my AN ?

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@donna3

Is there anything to make my dizziness or unbalanced feeling go away while I’m waiting to be treated for my AN ?

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Great question @donna3. I moved your message to the discussion that was underway to bring @cynaburst @jjanes3 @rosesareredmylove2016 @tracylynnedaley72 into the conversation.

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@donna3

Is there anything to make my dizziness or unbalanced feeling go away while I’m waiting to be treated for my AN ?

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I am not sure…It is possible they can give you some medication for dizziness, but I had to go through physical therapy and vestibular rehab after my surgery to remove the tumor. The tumor is located on the balance nerve, so it unfortunately does affect balance. After awhile it is possible for the other vestibular nerve to learn how to compensate, so you do learn how to cope, but unfortunately you are never quite the same as you were before.

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@colleenyoung

Thank you for sharing your experience with the group here on Connect, @rosesareredmylove2016. That is quite the journey and I’m glad you’re here to tell us about it!

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Hey Colleen: Yes its been an experience. And I’m happy to be here…Everyday now is different..Some days can be a challenge,..

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