Choroidal Puns

Just wondering if choroidal nevi can develop at anything during ones lifetime (like dermal nevi).

Thanks

Is there anywhere I can find more sources, research and meet other people with this condition?

I have bilateral, precursor lesion of idiopathic Choroidal Neovascularization.

My case is I believe quite unique... because I'm not myopic, I don't have a family history of eye disease, and never had any eye problems. To add to this, my CNV got bad overnight in September last year (wavy vision in one single spot in left eye, could not see objects or read text completely straight even with both eyes open, despite only left eye producing symptoms), got a little better for a couple weeks, got even worse a month later, and after about a month the symptoms has subsided almost completely, and my vision still remains 20/20, with a very faint, unnoticeable wavy vision in my left eye. I've had all the necessary tests done 3 times, which showed the movement/"natural progression" of the lesion, but no growth or leaks so far. My left eye is a lot more affected than my right eye, which remains mostly clean.

My prognosis is total unknown, I could keep a perfect sight for the rest of my life, or need eye injections next week.

However, I believe there's some change for the worse again (just this past week, I had scans 1 month ago and there was no change since October) and I think it's related to alcohol consumption but it's something I can't verify anywhere. Also my CNV got worse twice, last year, both times the morning after eating a pizza...

I'm in the dark with this disease and I'd love to reach out to other people who might have it and to have access to a variety of sources on the topic. I did not have good results with Google so far.

Would anyone like to talk about it, provide some experience or insight or ask me any questions about it? I'd love to talk

I am writing this because when I was diagnosed I searched for articles or forums or much of anything with people having similar diagnosis’s so I could know what to expect from a non medical perspective and had very little luck. So hopefully this helps someone else if they are feeling scared.

Last July I started seeing the lights. Flashing lights on my left side. It seemed as though someone was shining a strobe light at my back and I could see the flashing in my peripheral vision. This brought on some headaches and a bit of nausea but didn’t seem like a huge deal.

During a routine physical I brought it up to my primary physician, (who would later tell me she knew exactly what it was as soon as I told her about the lights, but didn’t want to scare me if she was wrong since this is so rare) and she referred me to an optometrist, who said she found a freckle on the back of my eye. She referred me to an ophthalmologist and I had to wait another month before that appointment.

Within that time, my vision degraded rapidly. Everything started looking distorted and bent, like a funhouse mirror or a psychedelic trip, and I could hardly see at all at night due to the flashing lights. I was a pizza delivery driver at the time, with a reputation for being one of the fastest and best drivers at the store. I remember several times during this period when I returned to the store in tears, terrified of what was happening, frustrated out of my mind that I could no longer effectively do what seemed to me to be one of the simplest of jobs.

When I finally got to see the ophthalmologist, they did a battery of tests, including an ultrasound directly on my eyeball (which by the way, sounds like it will be so terrible, but it’s really not. They numb your eye and it’s totally painless and not that bad at all). When the doctor came into my exam room after the tests were completed he sat down and told me that he hated to be the one to tell me this, but what was happening was that I had developed a choroidal melanoma, a cancerous tumor inside my eye. He referred me to an ocular oncologist at OHSU and sent me on my way.

I was completely stunned. I cried my eyes out in the parking lot while I waited for my parents to pick me up and take me home. Cancer? Me? I’m a 28 year old girl, I’m too young for this. I was terrified. I went home and spent the next 15 hours stuck to my computer screen, reading everything I could find on ocular oncology. By the next day, being as educated as

Had existing pt with h/o cancer that came in for CEE. Cancer has metastasized elsewhere in the past. Large area of hyperreflective material on FAF with ? serous detachment. Unable to get OCT. Have referred to retina for eval but what are your thoughts?

last years photo on right

last years photo on right

1. Anyone has secondary CNV (secondary choroidal neovascularization) and experience with lucentis?

2. Or does anyone have any experience with Lucentis? It seems to have more side effects and complications than LASIK?!

3. Alternatives to Lucentis for secondary CNV (secondary choroidal neovascularization)? Wait and see not an option here?

4. Does dry eye syndrome (caused by LASIK) contribute to secondary CNV (secondary choroidal neovascularization)?

Did anyone else find out their baby had a Choroid Plexus Cyst during their anatomy scan? What happened? I'm freaking the fuck out.

I have bilateral, precursor lesion of idiopathic Choroidal Neovascularization. I had multiple thorough examinations, scans and photos taken of my eye. I'm being under observation in a very good student hospital in Seoul where I live.

My case is I believe quite unique... because I'm not myopic, I don't have a family history of eye disease, and never had any eye problems. To add to this, my CNV got bad overnight in September last year (wavy vision in one single spot in left eye, could not see objects or read text completely straight even with both eyes open, despite only left eye producing symptoms), got a little better for a couple weeks, got even worse a month later, and after about a month the symptoms has subsided almost completely, and my vision still remains 20/20, with a very faint, unnoticeable wavy vision in my left eye. I've had all the necessary tests done 3 times, which showed the movement/"natural progression" of the lesion, but no growth or leaks so far. My left eye is a lot more affected than my right eye, which remains mostly clean.

My prognosis is total unknown, I could keep a perfect sight for the rest of my life, or need eye injections next week.

However, I believe there's some change for the worse again (just this past week, I had scans 1 month ago and there was no change since October) and I think it's related to alcohol consumption but it's something I can't verify anywhere.

I'm in the dark with this disease and I'd love to reach out to other people who might have it and to have access to a variety of sources on the topic. I'd especially love to read experience of people who have CNV, how it progressed, their treatment results, and maybe some reassurance too ; ;

I'd love to talk to someone about it.