Orbital Psuedotumors

SavageGlow · #1 ● 01-06-2023, 01:50 AM

*Not my story.

In 2017 I was 19, I woke up with my eye a little swollen, assumed it would just go away, it did and then came back with a vengeance a couple days later. I was given antibiotics which did nothing. I kept getting referred to more specialized doctors and then the next year was spent being treated at the Mayo Clinic in Rochester MN. I was put on such high dose steroids over that year that it brought on Cushings syndrome. I gained a lot of weight, my body ached all the time, my skin was awful. The swelling from my eyes frequently rendered me effectively blind and it was so so frustrating. I tried to live like normal through it but I just couldn't. like once I tried to go on a bike ride and just immediately crashed and skinned myself up and had to call my dad crying asking him to come get me. really humiliating when I just wanted to be 19. and even when the swelling was low my vision was very blurry.

I eventually was given a biopsy which didn't accomplish much. except making people stare even more than before. I also had to get repeated shots of steroids injected behind my eye which was...awful.

The end diagnosis was Orbital Psuedotumors with granulation tissue, but they admitted it wasn't quite accurate. As far as they know it could come back any day now, cause nothing was exactly resolved. Eventually I pushed to be taken off the steroids because they were wrecking me, and after a while of continued monitoring off steroids, it went away

I had a lot of photos taken by doctors and gave consent to being used in educational and research purposes. They even mapped my genome on their own dime, which would cost half a mil otherwise, but they thought it would be of research value. It found some unknown mutations that haven't been studied yet but I'd have to request it again cause I don't remember the name lol. I've also had a rare kind of cancer before that and they think both could be linked to this mutation.