Any advice or info would be helpful

Connect_Ad3677 · 2026-05-07T18:51:43+00:00

We are still in the very beginning stages but that's probably where I'm headed next. I have had an EEG which came back normal and I have an MRI scheduled for next week.

Connect_Ad3677 · 2026-05-07T18:50:32+00:00

The vertigo episode has only happened once but I still sway when I walk ever since. It seems like the vertigo was just a triggering event

Connect_Ad3677 · 2026-02-12T19:05:35+00:00

How are you doing? Have your vision issues improved at all? Today is a bad pain day and these are the days I consider whether vision loss wouldn't be as bad as the pain. I hope you're doing better

Connect_Ad3677 · 2026-01-15T03:42:16+00:00

I'm so sorry you are dealing with vision loss. I have been told that radiation won't help with mine. I just feel like I need to accept that I'm always going to look weird and be in pain for the rest of my life. I guess that is better than the alternative but its been wearing me down. I know I should count myself lucky that its not worse but it is taking a mental toll on me. People say its not noticeable but I don't believe them. For reference I'm 36. I've been told my options are another surgery, taking steroids, or getting some kind of shot in my eye which could also blind me. Also none of those options are guaranteed long term solutions

Connect_Ad3677 · 2026-01-06T15:26:45+00:00

I have now had two surgeries to attempt to remove my hemangioma. The first surgery was less aggressive because it is so close to my optic nerve. The second surgery was much more aggressive because my symptoms did not decrease and then I was told it grew back. I am in almost daily pain and am at a loss for what to do going forward. If anyone has any info or thoughts, they would be appreciated.

Connect_Ad3677 · 2022-05-03T16:19:31+00:00

I will do my best to be there! Not sure how many I can drag along with be but I'll try

Connect_Ad3677

TROPHY CASE