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Thanks for the replies everyone.
I've taken the few days to do a thorough research, and everything on this website is immensely helpful, though I am saddened that most of the resources on the website relate to US doctors and facilities.
I'm from Serbia, and this country is relatively poor. This means that the healthcare system is not good either, and there are no specialized facilities to treat this, but I wanted to hear from the neurosurgeons here as well.
Went to the Gamma Knife facility a few days ago and submitted my documentation, which they took and called a consilium. They told me they would see whether I'm a good candidate for GK and inform me via the phone. I'm yet to receive a call, and unfortunately the doctor there did not provide any real information I need or give me space to ask questions. He only told me that if I did GK I'd probably go entirely deaf in the affected ear and that there's a chance of hydrocephalus.
The next day I went to a neurosurgeon at the main University hospital and we went over the MRI. I still have good hearing in that ear and until a few months ago, it was in normal range, now showing slight decrease. No other symptoms really.
He told me they see maybe 15-ish such cases per year, that he'd prefer a retrosigmoid approach, and that I can possibly as well expect possible facial paralysis, that is a lowering a bit on my lip.
The diagnosis isn't hitting me hard because of the diagnosis, but because of my future plans. I've had an immensely hard time growing up, with parents and the environment I grew up being immensely distant. I worked a lot to move to another city, finishing my uni as a top student, working at my uni and as a software engineer at a local company. Just a few days ago I was looking for jobs in the EU to move to and finally settle with life. The mere thought of having to rely on my parents and relinquish my independence again is horrifying to me.
I used to be 100kgs (220 pounds) at 13 years old. Worked a lot to be where I am today, to be "more attractive" and everything. I would say facial paralysis possibility scares me here the most. Seems like life is literally saying **** you after all these years.
I think the biggest best resource this website could've given me is to seek specialized clinics and experts that deal with this. Doctors here, and especially surgeons don't like a multidisciplinary approach, and that was the first red flag to me. I'm immensely lucky to have health insurance in Austria. I've consulted a few of the best neurosurgeons there and was referred by all of them to a specific professor who specializes in acoustic neuromas and would be able to treat me. I was told they were all looking at my MRI together, so I expect a response soon.
Right now I'm pretty depressed and angry. I was complaining of tinnitus and ear problems to 5 ENTs since 2021, and no one took me seriously (probably because I'm young) and told me I have earwax. Always the same arguments with them that it's not earwax, and none of them even ordered an audiometry. The only indication that I needed an MRI was from a neurologist report when I went to the emergency room for a bad migraine, and he couldn't schedule it because the queues are full. I have that written on paper, but they removed it from my electronic eHealth papers, probably because they don't want to be liable that an MRI was indicated. This means that no other doctor I went to afterwards couldn't see that I needed an MRI.
Glad I took my health into my own hands and paid to get it done, pretty sad that it took so long. I'll make sure to keep you guys updated.
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