This sounds like a really useful event, especially the sessions on patient quality of life and the mock tumor board. It’s great to see medical professionals and patient support brought together. Thanks for sharing the details, and I hope it goes well!

Has anyone had luck getting their insurance to pay for their Cros system? I'm so frustrated that an implant (BAHA, Cochlear etc.), surgery, testing, you name it, is covered but a Cros is not. I'm urging my employer to let our benefits plan cover it (they have one that pays our deductibles up to the limit--very good plan overall), but although Kaiser has prescribed it, will be fitting it etc. the full payment is on me (out of pocket), and not applied to the deductible.

Related: I got no benefit from Cros systems in the past that I tried (Phonak, Oticon . . ), but I'm trying the new Phonak Eon, as my audiologist said there is new tech, and it is considered better at pulling the speaker's voice out of the background, than previous hearing aids. It's very $$ ($5100.). Have you tried one, or the newest from Oticon? Like many of you, I am SSD with normal range hearing in my good ear. So it's a trick to find something with benefit.

Thanks Mark! So far my symptoms are tinnitus and hearing loss. Word recognition on my AN side is 94%. What about UVA in Charlottesville, Virginia? It comes up more often when search about Acoustic Neuroma.

That is considered small, but it's honestly more about location, symptoms, and growth rate than size.  Mine was only 1.5 cm (15mm) when it was removed, but I was very symptomatic, and at the end it had grown 2 mm in 6 weeks.   My ENT only had three suggestions for treatment places that he recommended to me: Johns Hopkins, Hershey Medical Center, and Georgetown University Hospital.  I went to Hopkins and Hershey for opinions.  I wanted the surgery, and Hopkins recommended it, Hershey was stuck on radiation which I really didn't want, but if you are open to it, Hershey was a nice place and the people seemed knowledgeable, just not my preferred method.  I never went to Georgetown, but I trust the opinion of my ENT that they would make a good choice as well.

My path is a little different but I might be able to give you a little insight.  I had surgery on 5/13/2025.  Before my surgery I had a headache that never went away for 2 years.   I found then that Tylenol did nothing for it but Ibuprofen took the edge off.  It still didn't take it away, but it made it tolerable.  Fast forward to post surgery, I had a year that was amazing, zero headaches at all, then one night from out of nowhere came one of the worst headaches I have ever had in my life.  If it wouldn't have been 3:00 in the morning I would have asked someone to take me to the hospital, then I remembered Ibuprofen took the edge off before so I took 3, amazingly in 20 minutes the headache was gone.  Not just reduced but gone.  Over the next couple days the headaches returned pretty regularly, but each time the ibuprofen took them away.  I was up to 9 ibuprofen a day everyday before I finally called my neurologist, who referred me to a "headache clinic".  The neurologist at the headache clinic determined that it was most likely either scar tissue or that nerve was nicked during surgery and was now healing.  She put me on Lyrica because she was not a fan of gabapentin.  We are currently trying to find the proper dose a little at time.  I am currently on 200mg of Lyrica and the severe headaches are gone,  I do still get minor headaches almost daily but they are usually not bad enough to warrant taking the ibuprofen and they go away on their own.  And about once a week I get one severe enough  to reach for the ibuprofen, which still works just as quickly as before.  I suspect my dosage will be increased next time like talk to her as it has been the last several time.   My neurologist said the ibuprofen works better for me than Tylenol because the headaches are more inflammation related, and Ibuprofen is more geared towards that type of pain than Tylenol. 

Now what's really interesting is I have a good friend who has fibromyalgia, he was accidentally prescribed Lyrica and gabapentin at the same time and he was pain free for the first time in years on the combination of the two.  When his dr. found out, and he told the Dr. that it worked great, his Dr. started prescribing both to other patients who were not responding to just one of them, and it works for them too.   So if your Dr. is willing to give it a shot, see if they will give you both lyrica and gabapentin for a trial period.