Dear tam9912,

I'm sorry no one has responded to your post. The ANA can connect you with peer mentors who had radiation at a younger age, as well as young adult resources, including a support group and closed Facebook group.  There is a presentation, Radiation in Young Adults with AN, available on the ANA website which may be helpful for you.  Please reach out to Melanie for more information at melanie@anausa.org.

The ANA Team

Living in Australia btw.
About 3 weeks ago I had an episode of sudden onset sensorineural hearing loss, treated immediately with steroids and hyperbaric and per audiograms this pretty much fully resolved but there was some high frequency hearing loss on the right, and I recalled noticing that my hearing seemed a little reduced on that side prior to this.
Had an MRI today and the radiographer (not radiologist) clearly had seen something and asked me to come back soon for a contrast scan. Being a health care professional I asked her to level with me and she said she saw something "pressing on the nerve", that is looked benign and probably an acoustic neuroma. I know what they are due to my profession but I have never really deep dived if I'm honest.

Anyway so now I'm in the terror phase, no idea what to expect or how to process this, awaiting the contrast scan tomorrow and then I guess a specialist review in a week.
Any words of wisdom or things to keep in mind at this stage would be very welcome. I am asking ChatGPT to find my posts by people who are, regardless offering outcomes etc., living life happily years later - that kind of thing would be nice.

Also I have quite intense sinus and eustachian tube symptoms on the same side (crackling, popping, fullness that comes and goes, post nasal drip, crazy sinus pressure, boominess to loud noises when that ear is crackling and blocked feeling) which really throws me off and constantly make me worried for my ear, although it seems very intermittent, most of the time the ear feels basically fine and hearing fine other than pre-existing tinnitus flaring lately.

Easier said than done, but try to remember that an AN diagnosis is not the end of the world.  Like the others have said, without other symptoms it would seem pretty unlikely, but even if it were to turn out positive, you would most likely fall into the category of those who they just monitor.   It takes a large tumor, or a very symptomatic small one before any action is usually taken.  If you are not claustrophobic, the MRI machine really isn't that bad.  It's a little uncomfortable but there a lots of things worse.  I was anxious my first time in the MRI.  But after that first time of just not knowing what to expect, now it's just an inconvenience and not a source of anxiety.   

Any under 40 that got radiation over surgery for medium AN? Any good GK stories?

Hi! As Marla suggested, breathe. There is no emergency here even though everything feels scary. If it is an AN, you will have time to think and decide what you need to do. I had two months from a hearing test that showed single-sided hearing loss to the MRI and diagnosis. It was then another month until I met with the doctor who now monitors my AN. Mine is bigger than what they see on your tests. (And I understand the allergy thing causing a hassle as i have that problem with CTs (iodine-based contrast) but not MRIs--which does not matter here but does in some circumstances.) My doctor recommended watch and wait in February of 2025. I consulted another doctor at a different program who agreed. I now have done nothing other than monitor for more than a year as the AN has not changed much.

I currently have only a very little usable hearing in my bad ear, minor balance issues, and I'm living a good life.

You can do this.