optic nerve tumor surgery

[hockeymomof3]

I recently had a biopsy done on a tumor that is wrapped around my optic nerve. Two different path reports were done and both came back as a hamartoma. Now I was told that this is a very rare tumor but even more rare to get in the eye. Why can I find nothing on the web about a optic hamartoma? I find info about this tumor in the lungs, cowden syndrom (syndrome), etc. but nothing in the eye. Surely I can't be the only person in the world with this type of tumor in the eye. I understand it is rare but you must have come across this tumor in your carreer before. What are the characteristics of this tumor is it slow growing or aggressive?

[Jim123456]

Google up "retinal hamartoma." You should find more results.

And may I ask...how did you come to find out that you had a tumor on your optic nerve? Did you have any symptoms beforehand? I'm asking because I'm going for an MRI on Friday, because my eye doctor thinks I may have a brain tumor pressing on my optic nerve, making it "pale & weak", as he called it. But I'm yet to have any symptoms at all. No headaches, no dizziness, etc. My vision is fine. It was just a question I was wondering.

-Jim

[John C Hagan III, MD, FACS]

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[hockeymomof3]

I had no symptoms except for some double vision and I thought it was just from eye strain because I went back to school and have been studying a lot. I had no headaches, dizziness nothing. I was in a race and fell on my face. Went to the ER because I thought my left orbital bone was broken. They did a CAT SCAN and found the tumor on my right eye. Then they did a MRI with a follow up biopsy of the tumor.Are you experiencing any double vision? Have you ever had a MRI?

[Jim123456]

Nope, never had an MRI before. I had a CT Scan a few years ago because of an abdominal problem, though, but I know that's not the same thing. And I don't have double vision, or anything.

But this really supposed to be about me. It's about you. Have you looked up retinal hamartoma on google? If you can't find anything there, search one of the other forms on this site. Someone should have some info on here that can help. I wish I could help more, but there's really nothing else I can say. I wish you all the luck, and God bless!

-Jim