u/Kurosuki80

Okay so the Neuro/optho doc has just scared the bejezus out of me.

Things have been moving fast and I managed to get an emergency appointment with them which is next week. They just called me and said yeah how are your eyes doing right now? Answered them and they're like yeah can you get here tomorrow morning.

Now, the issues I've been having with my eyes. The left in particular, have been annoying but I didn't consider it to be something to stress over. TVO's, greying vision when too active, occasional central vision blind spots. And now it's happening even when I'm relaxing, but comes and goes.

Apparently that warrants an immediate visit. Yes I'm on meds. No, it hasn't been for long, yes I've had the usual MRI and LP drain. (2 in fact) Both at around 35 with a 70ml drain. Within a week of each other and the second was a week ago today.

I was already planning on heading back to the hospital for another LP drain in the morning. Guess that plans changed! FML.

Murphy has it out for me!!!!!!! 🫣🫣🫣

Sorry that call stressed me out a bit. I've just been home, chilling, thinking everything fine, so long as I can still see I'm happy. And now I'm sat here crapping myself about my vision!

Hi everyone. Don't mind me. I'm an old hat at the IIH game, I'm one of the lucky ones I guess. I got diagnosed long enough ago I can't exactly remember how long it's been, but up until now treatments have always been a success. I'd flare up, my opticians would catch the paps and id go through all the usual scans and meds and LP's and then after a while I'd go into remission. Rinse and repeat time and again about four times now.

This is number five and I guess my body has decided to throw in the towel. Got my usual high 30's on my LP but grade 4 paps this time, everything is just worse. And nothing is working. Two LP's within six days both high 30's with maximum drain of 70ml and I'm already starting to get the pain back two days later.

And my left eye is giving me total crap. I'm guessing there's gonna be surgery this time. Guess my luck ran out!

So yeah. Hi guys. Figured it was time to stop turtling my head in the sand thinking it'll all be fine and join in with the people who actually understand the crap this puts you through.

So has anyone got any real, actual advice about the surgical options and not Google fear mongering because I swear Google likes to tell you you're dying at the smallest issue! 🤦‍♀️

Nice to meet you all! 👋