3 year MRI coming up

[UkulelesAreAwesome]

I haven't used this forum in a while. I got too scared about my situation and stopped googling acoustic neuroma or using the forum. I am coming up on my 3 year MRI soon. I had GK for a 1.5 cm AN in 2022. Things were stable one year later in 2023. Early 2024 brought facial spasms and head pressure. I've been on a 6 month MRIs schedule since then. The latest MRI showed the tumor growth or hopefully pseudo progression plateaued and ventricles were stable. Some days I actually feel good and I'm so thankful. Other days my left ear throbs or my entire head feels like it's on fire and I feel pressure on the left side of my head. My MRI should be this month but I'm doing it in June instead because I'm hopeful it will decrease or stay the same size. I'm being stupid, right? I feel like it's ok to hold out hope for just a little longer but I am realizing my GK likely failed as the tumor has increased prior to the plateau. I thought I'd made the right choice with GK. I was proud of my choice. Since last year the ventricles are being watched and the tumor developed a cyst. I know the 3 year mark is a time when decisions are likely made. I have no idea how to handle my fear, my anxiety, and my disappointment. I'm so tired of living from one MRI to the next MRI. Life was not supposed to be like this. 

[Karin Mauro]

Please stop beating yourself up. There is nothing wrong with the decisions you’ve made. When we are presented with options for treatment there is no wrong choice. All the options are valid choices but each outcome is unknown, and anything can happen. It’s not your fault nor your providers. You’re not stupid and there’s nothing wrong with holding on to some hope. You’ll have your next mri and make your next decisions accordingly and your decisions will be right for you at that time. Find a way to deal with the anxiety and fear that works best for you, ie; exercise, reading, play the ukulele!…
Enjoy the good days, and know that you’re not responsible for the not-so-good ones. This is just how it is.

Best wishes, karin

[jackstayyellow]

There is nothing wrong with maintaining some hope, and you are not a moron. When your next MRI comes around, you'll be able to make the best options for yourself at that moment.