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Tracy Lynne Daley
@tracylynnedaley72

Posts: 3
Joined: Jul 17, 2015

Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

Posted by @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.

REPLY

I had an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?

Hi @tracylynnedaley72
I thought I would take a minute to check in to see if you received a notification about @cynaburst‘s message to you. Would be great to help connect 2 people with a similar and very rare diagnosis.

Tracy, have you had surgery since we last heard from you?

Hello- looking for info as well about acoustic neuroma. I have MS and get an yearly MRI. The found it last year but did not inform me it was 3mm. This year it is 4-6mm. I am in the information gathering stage. Thank you

Hi @jjanes3, I’m glad you found us here at Connect. Welcome.
Here is some basic information from the Mayo Clinic to help you get started with gathering information http://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/basics/definition/con-20023851

And @tracylynnedaley72 and @cynaburst can also add their experiences.

What course of treatment is being recommended Jjanes?

Colleen
Connect Community Director

Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very scary indeed. I went in to my doctor with an earache. They gave me 2 weeks of antibiotics . After that 2 weeks the side of my head still hurt and I was loosing balance. I went back and was sent to a ENT who did an ear biopsy, nasal passage biopsy and an MRI in a 3 week period.
The biopsy showed nothing as well as the nasal scan. But the MRI came back showing a 3.4 centimeter tumor in my ear canal and growing and pushing my brain stem in too the point that they saw Hydrocephalus(water on my brain). I had no headaches after the earache no pain or dizziness , nor imbalance. There were no symptoms at all.
Three weeks later I met with my surgeons and neurosurgeons and they explained the surgery to me and my children. It was a scary time, BUT I have a daughter who is an RN and any questions I didn’t know to answer she did, and by the time my surgery was scheduled, we had all our answers and were as prepared as we could be.
I was diagnosed February 9, 2014, and my surgery was scheduled for March 10, 2014. I am allergic to a lot of the Anastasia drugs they give people when in surgery, so I had to make many scheduled appointments to the neurosurgeons for testing. My surgery was 12 hours. In this 12 hour period I had 4 surgeons and neurosurgeons flip flopping thru my surgery. When one completed their part they came out and updated my daughter so she could update my family as too progress. It took the full 12 hours.
the amazing part is with this surgery it was non cancerous and they scraped on my nerves for 12 hours and needed to leave 2% of the tumor on my brain stem or it would have severed nerves for my face and eye. I am 2 years since this surgery and I still need to see neurosurgeons for MRI and testing. I have imbalance due to the hearing loss in my left ear where the surgery was performed. Things that never bothered me before do now, my balance is still off and will always be off. I just need to adjust my employment and life to the after effects of having needed brain surgery.
Every day is a challenge, but I by the Grace of the Good Lord am alive.

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!

Rose – My AN was about the same size as yours and I had hydrocephalus also. Did you get a shunt for that? I got a VP shunt a week or so before they removed my tumor. Then, I had a 7 hour surgery to remove the tumor. I was very lucky that they were able to remove the whole tumor without leaving any behind. However, I do still have the shunt for life.

I was also very lucky not to be left with serious deficits besides the loss of hearing in my right ear. My surgeries were a little more than 14 years ago, and I am doing great. Very grateful to my skillful surgeons.

@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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HiTracy:
I was diagnosed with this same tumor in 2014 after going to my Doctor with an ear ache. My surgeons scraped on my nerves for 12 hours to remove 98%, I still have 2% on my brain stem due to them NOT anting to damage my nerves. Its been 2 years since my surgery and I have imbalance and eye issues. My nuerosurgeon says I will always have these issues, But he also says it could get better once my nerves re-generate. Theres always the possibility it could get worse. I am praying for better, not worse as this surgery effected every part of my life as is.
Rose

Hello there. I didn’t get a shunt put in until just before my surgery, than I had a 12 hour surgery to try and remove the tumor. I lost hearing in my left ear, I was also very lucky. It was non-cancerous, and the surgeons were amazing. The shunt did its job the day of surgery, I went home 3 days later when the neurosurgeons released me from ICU. I need an MRI every year now to make sure the 2% they needed to leave isn’t growing. But no shunt, just a dip in my skull where it was inserted the day of surgery. My balance is still off and noise bothers me some days. otherwise I’m doing good. Physical therapy helped me a lot and I do eye exercises every day.I have my good days and a few bad.

@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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Hi Colleen:
Thank You, and I am happy I found this group. It helps me to know I’m not alone in this journey after my surgery. I have GREAT neurosurgeons, and they did an amazing job. I am very thankful every day for all the good things in my life.It has been an amazing journey and I am thankful I am here to tell about it.

@jjanes3

Hello- looking for info as well about acoustic neuroma. I have MS and get an yearly MRI. The found it last year but did not inform me it was 3mm. This year it is 4-6mm. I am in the information gathering stage. Thank you

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Hi ljanes:
I had no idea what an acoustic neuroma was until I learned I had one. Mine was in my inner ear left side. It was 3.5 centimeters when they found it. My neurosurgeon said it probably had been growing for a number of years.I had inner ear aches for about 8 years and was given antibiotics for those. I had no imbalance issues, no headaches, no eye issues that are normally found with this type of tumor. And the chance of anyone getting one of these is like 1 in 100.000. So Yes I was shocked when I was told I had one growing in my brain. Yours is obviously getting bigger. Do you have balance issues, or headaches from this? Mine was getting so big, it was closing off the drainage to my spinal column and causing hydrocephalus, so that was another issue I needed to be careful of and watch for signs before my surgery date.I wish you well and I hope you find good surgeons as I did to remove yours.

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

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

@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*

@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,

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*

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