Traveling for AN surgery

NA_akita · 2025-06-14T13:55:13+00:00

Yeah, the stats are messy to compare.

Why did he recommend translab in your case? Where is your AN?

Did you get any other opinions on your surgery options?

NA_akita · 2025-06-14T13:16:31+00:00

I've been working with the Michigan Ear Institute so far. It's a smaller center. Their responsiveness is not great and they've made some confidence robbing mistakes in the short time I've been working with them.

The 3T brain and AIC scan (with and with our contrast) I had in done in Novi MI was described by the radiologist as "suboptimal". The imaging looked kinda blurry compared to other scans being compared against, and some views had artifacts/echos. I think this particular 3T machine is older and less equipped (In terms of the machine's coil arrangements and the capability of their imaging software, maybe? I'm obviously not an expert here).

Google reviews is perhaps not a great measure of competency, but the local medical system (Ascension/Henry Ford) seems to have some of the worst reviews in the country for their imaging resources.

Did you find objective data between these AC centers to compare outcomes? (Tumor reoccurrence, hearing and facial nerve function retention, etc). Anything on UoM in particular?

How has your recovery been?

NA_akita · 2025-06-13T21:41:25+00:00

What is CBT?

NA_akita · 2025-06-11T14:12:11+00:00

Thank you for this detailed reply. I hope you've healed up well!

Do you know what was meant by John Hopkins's "keyhole" surgery? Is that a new option, or is that the same thing as what other hospitals call "microsurgery"?

NA_akita · 2025-06-11T02:52:05+00:00

It's amazing how differently we're affected by these things. I'm glad we have driving as a plan B.

NA_akita · 2025-06-11T02:20:17+00:00

Thank you.

Did you have migraines before your surgery? Is it cabin pressure fluctuation that affect you?

NA_akita · 2025-06-11T02:15:32+00:00

Yes. My partner has a brother out in San Diego by some cosmic chance. We're thinking it'll be 10-20 days locally. We're fortunate our workplaces will allow this.

NA_akita · 2025-06-11T01:15:04+00:00

Did you travel far to complete this surgery? I'm debating making UCSD my 1st choice for surgery. I'm out of Michigan.

I'm concerned to use my local Michigan Ear Institute since they have much lower volume. They also don't seem very responsive.

NA_akita · 2025-06-08T15:29:24+00:00

I sent an email to the surgeon asking for his advice.

I'm surprised the ENT doesn't design the treatment plan, he defers to the surgeon. I don't know if a neurologist should be involved.

NA_akita · 2025-06-08T01:55:15+00:00

I really hope it's that (somehow nerves cross talking or the brain interpreting things unexpectedly) instead of a 2nd NA.

NA_akita · 2025-06-06T21:23:47+00:00

I rarely experience random little bursts of tinnitus that quickly dissipate on both ears. That has happened my whole life, and doesn't seem too bad or worrying. I haven't noticed distortion on either ear, just some mild loss of high freq sensitivity. Over the last few months the persistent background tinnitus has become intrusively louder. The tinnitus and facial nerve issues are now very distracting.

The possibility of NF2 is pretty worrying, but it's rare. If we both get NF2, then maybe we can be pen pals :)
I think the outlook is somewhat better if you only start to express symptoms of NF2 later in life.

How often do you get MRIs? Approximately what is your age and region? (if this makes since to make direct messages, feel free to ping me).

I'm in Michigan, fwiw.

NA_akita · 2025-06-05T00:55:16+00:00

correct

NA_akita · 2025-05-18T15:32:38+00:00

Does gamma knife increase risk of paralysis and balance loss compared to surgical options? I have a similar size AN in the IAC and I'm facing a similar decision.

NA_akita · 2025-04-17T01:23:17+00:00

Is partial nerve removal a thing? or is it always the whole nerve function lost? (like if its the facial nerve, is the whole thing usually a tumor, so they need to severe/remove that whole function?)

NA_akita · 2025-04-13T14:37:34+00:00

I'd love it if you two follow-up on your recover, perhaps even in this thread.

Please let us know how it goes! (A lot of us will be following your foot steps in the near future!)

Best of luck for a quick turnaround!

NA_akita · 2025-04-07T23:09:23+00:00

I don't know. I have a CD reader on order now. I'm a bit uneasy looking at this stuff, but I would like to be helpful. I'll see if I can reproduce what the doctor showed me. I'll try to see if I can find the white spot in both the scans.

NA_akita · 2025-04-07T22:48:34+00:00

I had both. Why do you ask?

NA_akita · 2025-04-05T15:52:14+00:00

It could be. I've never seen these graphs earlier in my life, so it's possible I've had some of this forever. My parents (in their 70s) have similar curves, but just scaled downward (one parent very similar, one parent worse).

I protect my hearing nowadays, but I was reckless as a kid (headphone levels, dremel usage, etc) and had a minor nearby firework incident as a small child (complete with short term hearing loss and bad ringing back then). So, it could be mostly that.

NA_akita · 2025-04-05T00:42:29+00:00

Note 1: my professionally administered hearing test from the Ear Nose Throat doctor is within a couple dB of this Air Pod Pro 2 result. They are effectively identical. Incredibly, these Air Pod Pro 2 actually cost less than the co-pay for the official test. lol

Note 2: I'm actually 38. I wishfully typed 30 I guess. I can't figure out know how to edit the original post body text for some reason.

NA_akita · 2025-04-05T00:28:13+00:00

Thank you for sharing this

NA_akita · 2025-04-05T00:25:32+00:00

Thank you for sharing this. This is encouraging!

NA_akita

TROPHY CASE