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newly diagnosed and trying to get all the information I can

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cfinn:
I’m trying to get my head around having the words tumor and my brain in the same sentence. I seem to do better if I just think of it as an acoustic neuroma (which sounds like it might be a fancy and expensive guitar).

My MRI shows an 8mm left intracanalicular acoustic neuroma within the left internal auditory canal that does not protrude into the cerebellopontine angle. I realize that this is a small tumor and I’m hoping that wait and see will be the best approach for me. However, I suspect that it may not be a simple decision.

I have some hearing loss in both ears, but though the right ear has remained relatively stable since my first testing in 2011, the left ear has gotten progressively worse, particularly in the last year. I experience tinnitus in my left ear which has also gotten much worse. This progression of symptoms makes me think that the AN is growing, and possibly a bit faster than usual.

I'm glad I found this site, It's good to have someplace to talk about it.

Carolyn

ANSydney:
Hi Carolyn. Welcome to the club that nobody wants to be a member of, but everyone is friendly.

With regards to size, wait and see will undoubtedly be recommended. However, you also need to look at symptoms - are they bearable?

An AN typically has hearing loss in the higher frequencies, rather than across the boards. Does your hearing test show a flat response up to about 2 kHz then drop off in the left ear?

How long have you had the symptoms for? Suggestions are if symptoms have only started, then growth is more likely. Stangerup found now growth after four years after diagnosis ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ). He also found that growth typically slows with time. Some have had growth after 4 years, but its rare.

Over two-thirds of tumors don't grow (number varies from 50% to 90% don't grow). A lot of this difference depends n whether you take grown as >1, 2 or 3 mm.

Citiview:
Cfinn
A great way to gather info is by utilizing the resources of the ANA. If you are a member you can listen to the webinars and the written materials are excellent.
One thing to understand is that the tumor can destroy hearing even if it's not growing. Once hearing has started to decline it will further decline, sometimes rapidly, sometimes slowly over time.
Recent research has shown that some tumors have excretions that may be responsible for hearing loss while other tumors do not. If you are interested in possibly saving the remaining hearing then perhaps get an opinion regarding middle fossa surgery at a top institution.
Watch and wait is fine, but your hearing may further decline during observation.
Only a few centers do middle fossa surgery.
The greatest factor in success of treatment is the experience of the medical team.
Look for doctors who have a great amount of experience with acoustic neuroma.
It's a rare disease so there aren't that many places that qualify as high volume centers for acoustic neuroma.
That being said, all of the treatment decisions are personal and one should conduct their own research and find comfort in their own process and decisions.

ANSydney:
If hearing preservation is the main goal: https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf

"In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis."

Citiview:
ANSydney
That paper is an important reminder that even if hearing preservation surgery is successful, hearing may nevertheless decline or be lost in the future.

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