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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.

rma83 | @rma83 | Jan 26 1:58pm
In reply to @rw01 "I had a consultation last week. The doc described the tumor as schwannoma, though not specifically..." + (show)
@rw01

I had a consultation last week. The doc described the tumor as schwannoma, though not specifically an acoustic neuroma. He recommended surgery or radiation. The MRI was the best test available. A talk with another doc happens on Monday.

On this forum people said they were told that a 2% chance of some other tumor happening from radiation. I asked about it; he said it's a pretty low dose, and the chance is about 2/10ths of 1%.

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Hi..My name is Rose and I was diagnosed in 2004 with a schwannoma on the left side of my face. I was told it was a facial neuroma and very rare. I was sent to a specialist in Arizona, where I was living at the time. I had 10 radiation treatments and have been monitored with MRI every 6 months. The surgery for a facial neuroma is debilitating. I will lose all control of face muscles. When having MRI 3 years ago they discovered 2 meningioma tumors, one in frontal lobe and one at base of my brain. I live in Connecticut now and started seeing only Dr at the time who worked with this type of tumor in CT at Yale, the facial neuroma - schwannoma. I'm almost 80 now and ended up going to see another specialist in Boston Mass. General. He did tell me that the radiation could cause cancer, I was never informed of that but so far so good! The radiation was to help stop the growth of tumor and it worked until 5years ago. It is now growing very slowly. It is a wait and see thing!! I think it would be best to see a Dr who will tell you exactly what type of tumor you have. From my understanding the treatment for acoustic or facial tumor are very different.

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brchristian | @brchristian | Jan 26 3:53pm
In reply to @djewell823 "Hi, I’m not sure if you got an answer to your question about whether Mayo could..." + (show)
@djewell823

Hi, I’m not sure if you got an answer to your question about whether Mayo could give you a second opinion without it being in-person. I don’t know the answer to that, but I know that Dr Friedman at UC San Diego will do that.
I consulted with both places, by phone at UCSD and in person at Mayo. I chose Mayo, primarily because they could get me in sooner. UCSD has a very efficient process for sending records and doing a phone consult.

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Thank you for the suggestion. Somehow I managed to also discover the UCSD clinic. I sent some of their online literature to my daughter. But we also got a response from Mayo and my daughter is sending all of her information to them. As Colleen said, this is turning out to be a second opinion.

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rw01 | @rw01 | Jan 29 10:51pm

Third day of GK treatment. I lie down, the shaped mask is put on, a CT scan happens to be sure the head position is good. Partially slid, mostly top portion of the head into the machine. Two tablets ( 2 mg each ) of Dexamethason in the morning with food.
This is at UC San Francisco ( a high volume hospital? ).
The treatment where people have some headgear with little bolts seems different.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 8 2:20pm
In reply to @djewell823 "Hi, I’m not sure if you got an answer to your question about whether Mayo could..." + (show)
@djewell823

Hi, I’m not sure if you got an answer to your question about whether Mayo could give you a second opinion without it being in-person. I don’t know the answer to that, but I know that Dr Friedman at UC San Diego will do that.
I consulted with both places, by phone at UCSD and in person at Mayo. I chose Mayo, primarily because they could get me in sooner. UCSD has a very efficient process for sending records and doing a phone consult.

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A belated welcome, @djewell823. Thanks for the information and your experience with both UCSD and Mayo Clinic.

What treatment did you have at Mayo Clinic? How are you doing now? Do you return to Mayo for follow-up or follow-up closer to home?

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1 reply
djewell823 | @djewell823 | Feb 8 4:56pm
In reply to @colleenyoung "A belated welcome, @djewell823. Thanks for the information and your experience with both UCSD and Mayo..." + (show)
@colleenyoung

A belated welcome, @djewell823. Thanks for the information and your experience with both UCSD and Mayo Clinic.

What treatment did you have at Mayo Clinic? How are you doing now? Do you return to Mayo for follow-up or follow-up closer to home?

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Thanks, Colleen!
I had my 1.7 cm acoustic neuroma removed by the retrosigmoid approach in late May, 2024.
My hearing was partially preserved and no damage to my facial nerve, thankfully. I do have severe headaches, however, which have definitely affected my quality of life. I live 8 hours from Rochester so I see local doctors now, although I message my surgeon with various questions and appreciate hearing back from Nurse Marina.
I had my follow-up MRI at Mayo 3 months after surgery and don’t have to have another one for two more years.
If anyone has figured out a solution to post-surgical headaches I’d be very grateful for the information.

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