Acoustic Neuroma: Auditory symptoms are overwhelming

I TOO GOT DIAGNOSED RECENTLY, CONFIRMED BY MRI

HAVING TINNITUS FOR 1 AND 1/ 2 YEARS,
ONE EPISODE OF VERTIGO 2 YEARS AGO,
DIZZINESS OFTEN,
MILD BLANCE DISORDER,
INSOMNIA
INABILITY TO CONCENTRATE ON FINE JOBS

I don't know anything about Brigham but I think you can get a remote second opinion from Mayo. You just need to send them all of your information, test results, etc. Its an added hassle but might be worth doing for peace of mind. Not sure but other places like UC San Diego might also provide a remote second opinion.

This sounds like the approach I would to take..they ruled out radiation..my AN is 1 centimeter as of December. I’m in Vermont and researching Brigham woman’s hospital in Boston for this surgery

Thank you

Okay. You are in good hands. I would just make sure to ask about the option to do this type of surgery. This is from the UC San Diego clinic website.

The middle cranial fossa approach involves an incision above the ear. The internal auditory canal is approached from above and an experienced surgeon can expose the tumor without compromising the structures of the inner ear. This procedure is reserved for patients with useful hearing and tumors smaller than 1.7 centimeters. This technique offers the highest likelihood of long-term hearing preservation.

I am going through Mayo Clinic in Rochester. Honestly I am not sure on what type of surgery was discussed just a microsurgical resection. With the smaller size, I didn’t want to make any decisions right away so wanted to wait and have repeat MRI in 6 months. At that time had grown but still fairly small. I am kinda the one step at a time so I don’t feel too overwhelmed. Basically 1st appt was results, 2nd has it grown or not and if it has how quickly, next MRI will be when I ask more questions about surgery and what I can expect moving forward.

Which clinic are you talking to and what kind of surgery are they proposing?

@kprice45, hard to say which is the best treatment for you. But this is a good starting point to make a list of questions for your upcoming appointment with the oncologist. I would ask questions like:

- What is the best treatment option for me?
- What are the risks, potential side effects, and expected outcomes for each type of treatment?
- What are the next steps?

Kprice45, what questions do you have on your list?

On my 6 month MRI, mine did grow. I will have another MRI in July and see how much it has grown this time. Since I still have hearing in my left ear and it is fairly small, my neurosurgeon suggested I wait but was good with whatever option I decided. My AN is farther from brain (which I thought would be good but apparently not). I will lose hearing immediately after surgery. These are the reasons why I have decided to wait. They never mentioned it would stop growing. It’s just a matter of how big do I let it get before removal. Also, he did say that your brain can “adjust” slightly to your new normal. Last summer my symptoms did seem to get a little better for a few months. Symptoms started back again in oct and have gotten worse in the last month again.

Thanks. That all sounds pretty consistent with what we have heard. Just a little curious about the "wait and watch". I get that there is no great urgency for you to have the surgery. At the same time, "wait and watch" makes it sound like it might cease to be a problem for you. Is that what you have been told? We have heard that these ANs can stop growing but not that your current symptoms might go away.

I was diagnosed in May with AN. Repeat MRI oct and has grown but still small so on wait and watch. I been experiencing a lot more tinnitus and balance/dizziness in the last month. I feel like at times it is harder to walk. Like I am drunk or something! My hearing is still pretty good. My neurosurgeon said symptoms are totally unrelated to size of tumor you have. Could have a large AN with no symptoms or a small one with a lot of symptoms. When time comes, I will have surgery. I was informed that if you have radiation and surgery down the road is needed that it will be harder to do.
Good luck!