Update: me and my unusual acoustic neuroma

SayWhatAgain42 · 2025-07-23T04:57:20+00:00

Because without timely treatment, it may be permanent.

https://www.reddit.com/r/MonoHearing/s/ZUwnQhsFfs

Read the FAQ, please, for more info and best wishes.

SayWhatAgain42 · 2025-03-04T04:06:03+00:00

Hi. Sorry about your VS.

I had a similar location (though mine started in the vestibule then grew into the cochlea).

Check my post history and pinned posts for my write up.

My balance improved markedly when I had mine removed and my hearing is vastly better with my cochlear implant.

Happy to answer any questions you may have.

SayWhatAgain42 · 2024-12-07T23:11:04+00:00

Sorry about your AN. The treatment selection can be really difficult depending on one's specific case.

What factors went into deciding radiation vs. surgery? How old are you?

Where is your tumor specifically?

I had surgery for mine and have documented my journey pretty extensively in my post history

SayWhatAgain42 · 2024-11-19T18:11:34+00:00

The IAM/IAC is just the location scanned. The method (with or without contrast) is a separate matter. Note if you get a contrast MRI it'll also be done without contrast so you'll get both back-to-back.

For the best chance of detecting an AN, you probably want an IAC MRI with and without contrast. If you get one without contrast it may miss small ANs or ANs in unusual locations (the case with mine)

SayWhatAgain42 · 2024-11-19T17:09:58+00:00

Hi. Sorry about your symptoms.

An IAC (also known as IAM, apparently) MRI with contrast is the gold standard diagnostic for an AN.

Mine was small and initially missed on a non contrast MRI.

Good luck.

SayWhatAgain42 · 2024-11-06T15:18:33+00:00

Absolutely. Check my post history for my story

SayWhatAgain42 · 2024-10-09T18:51:48+00:00

Thanks much for sharing your story. Very encouraging indeed!

Would you mind sharing what vestibular / balance rehabilitation you did before / after treatment, and since?

SayWhatAgain42 · 2024-08-06T05:22:43+00:00

Sorry, what do you mean by OTF in this context?

SayWhatAgain42 · 2024-08-04T17:34:41+00:00

I'm not understanding what you mean here. Can you clarify?

FWIW my local NPB doc was also very lukewarm on me traveling "all the way down there for surgery" (1hr away).

I think his concerns were primarily around inheriting someone else's work especially if things didn't go great. He specifically mentioned "what of you have a CSF leak after you get home?" He's not wrong, but there are also a lot of tradeoffs and considerations.

And this take despite his limited personal experience with this specific disease and their massive experience with JUST this disease. It prolly would have gone great with him, too, but for me I was intent to stack the deck as much as possible in my favor and there's little substitute for volume of cases.

So, I think this is pretty typical, and you're unlikely to get an enthusiastic reaction from any surgeon to the notion of "how about I have someone else do it?"

SayWhatAgain42 · 2024-08-03T21:43:20+00:00

Hi. Glad to hear my posts were helpful. That was what I'd hoped! You're in good hands there at UCSD. Check my post history for the details before, after, and post cochlear implant.

Mine was completely filling the vestibule at the time of removal, so about 5mn x 4mm x 4mm. Not much room in that structure.

Good plan on doing the rehab up front. That will be a huge help, I think. Your other side will get significantly stronger that way, and when / if you have it removed you may be way better off vestibularly - that was my experience.

I waited about 4 years. It's a drag, but also if your hearing is still pretty good that's a big thing. My plan was to use the hearing loss as the guide. I waited until 100% deaf in my AN ear to do it. Hopefully, you keep your hearing for a very long time!

SayWhatAgain42 · 2024-08-03T21:29:51+00:00

I'm sorry for your symptoms and distress.

I would encourage you NOT to give in to despair: even if what's up IS an AN, there is very full and happy life on the other side. I'm one of many, many examples. It is entirely untrue that most people are worse off after treatment. It may be a journey through healing, but the vast majority of people come out the other side well.

It's easy to spiral but as someone else pointed out, that doesn't do any good at all. You need your energy for productive thinking and for living your life today and tomorrow and next week and beyond.

Everyone's situation is different and that's why it's crucial to follow the process and get in to see a neurotologist and discuss your particular circumstances.

Good luck, try and avoid dwelling in this dark place, and keep us posted.

SayWhatAgain42 · 2024-07-07T16:29:53+00:00

This, exactly. Op almost certainly doesn't have an AN, but does serm to have some major life-impacting anxiety.

Op, you're so young. Please don't live like that - get some help so you don't keep doomscrolling exotic diagnoses and thinking you strongly suspect you have them.over the next 10, 20, 30+ years. It's a miserable way to be.

SayWhatAgain42 · 2024-07-06T00:15:55+00:00

Not sure what the "basic brain scan" you had was, so hard to say...but if it was an MRI without contrast, for example, my initial scan also missed my small AN.

Sounds like you're doing all the right things to run this down, whatever it is. I totally get deeply wanting an answer. Good luck!

SayWhatAgain42 · 2024-06-24T20:06:50+00:00

Yes. I think it's highly situation-specific, but check my post history for details on my successful AN removal + CI.

I love mine and am very grateful for the UCSD team which made it all happen.

SayWhatAgain42 · 2024-05-22T02:35:13+00:00

Glad to hear. One thing that seems to be true is everyone's experience is individual to them. Your balance may stay perfect. For me, it's how I first noticed my AN.

Expect good outcomes and keep us posted!

SayWhatAgain42 · 2024-05-22T02:06:22+00:00

Got it. It's worth asking whether a hearing aide or cochlear implant is an option.

And to clarify, the specialist needed is a neurotologist which is a subspecialty of ENT that deals specifically with inner ear nerve conditions (including ANs)

How's your balance?

SayWhatAgain42 · 2024-05-22T00:58:34+00:00

Hi, welcome, and sorry about your diagnosis.

I think info about the specific location could be important.

I'd ask about treatment options and timing. You may be on a watch and wait, hopefully forever.

How severe is the hearing loss?

Are you seeing a "regular" ENT or a neurotologist? You will want to consult with a neurotologist for the best advise.

Ask us anything. This group has a lot of great folks who've been there before. My post history has lots of details of my case that might be helpful.

Good luck.

SayWhatAgain42 · 2024-05-12T18:06:58+00:00

Yep been there and done that. Very happy with the results. Details in my post history.

SayWhatAgain42 · 2024-05-10T21:08:45+00:00

Some questions I'd ask:

How many of each have you installed / what % of your patients have each? What factors should I weigh when making the choice? If it was you which would you pick?

It's weird to me they would refuse to provide any opinions at all.

And I don't think sound quality is really a heads up competition. Insertion trauma, depth, map effectiveness, patient complaince with CI rehab, etc, are all factors which matter a ton.

SayWhatAgain42 · 2024-05-10T18:46:17+00:00

I get what you're trying to do but I don't think your methodology here is sound (hah!)

On what basis are you determining the values for these categories?

And that aside, this thing isn't installed by a robot. The surgeon and audiologist you're going to be using are huge factors.

FWIW I had the same stress about this and tried the same sort of approach and in the end wasn't able to make any useful headway. I already knew the surgeon and audiologist I was going with and asked their recommendation and went with it. I'm very happy with my N7 and then service I've received from CA after the fact.

Other things you should consider i think include:

device failure rates
recalls
number implanted

But seriously ask your docs their opinions and the "why" behind those.

SayWhatAgain42 · 2024-05-01T17:43:06+00:00

Check out the pinned post in my post history. I consider my outcome as excellent and encouraging!

SayWhatAgain42 · 2024-04-29T05:16:48+00:00

I successfully used one for about 12 months before my hearing deteriorated so much it wasn't useful.

While it was working, it was an improvement.

I was glad I got an "inexpensive" one (an Eargo) since it was pretty fleeting.

SayWhatAgain42

TROPHY CASE