hello, I’ve been floating on this website since May last year as I noticed a blurred spot in my right eye, which initially the ophthalmologist department thought was cnvm. It’s just off centre vision. I got a call to come in for an injection as I had a pigment epithelial detachment probably due to liquid - which naturally was scary - I am 36, -6 in both eyes, with astigmatism. Never had issues and always knew to look out for retinal detachment but this macular situation is new to me.
Anyway I was hesitant because I hadn’t seen or spoken to a consultant so I saw him, he took further scans, changed his mind on what was going on did a fluoroscien angiography and decided it could be CSR and put me on monitoring as the pigment epithelial detachment self resolved (vision remains impaired in that spot). I now have a small patch of metamorphosia in my right eye too,
I monitor with the Amlser regularly.
when I blink now there are flashes where my patch is and I’ve noticed a small flashing patch in my left eye on blinking which I’ve been to them before about and they say nothing going on there, it’s happening again so I’ve just had more scans this week as I don’t understand now I am feeling scared and back to square 1 again.
I guess my questions are … does anyone else suffer with this specific flashing on blinking where their damage is?
How do you keep your anxiety at bay? I have a 17 month old son so this is even more scary for me as it happened when he was 5 months old- I had no vision issues in pregnancy. I want to see him grow up and this terrifies me that I’ll not be able to support him.
Does anyone have pigment epithelial detachments as part of their diagnosis? CSR? CNVM or uncertainties with their diagnosis’s?
Also, looking for some positive stories as I feel really young to be dealing with this -I know from reading the forums but being to scared to accept my situation and comment that there are people with similar situations and that some of you are around my age or maybe younger.
I have seen moorfields -Prof Tufail. And am currently under Bury St Edmunds in Suffolk.
I have been having therapy with Macular society as well as it’s a really scary and lonely place to be as you see your symptoms constantly so you are reminded of the worries all the time!
thank you for taking the time to read this, Amy x
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I understand how you feel, I have -16/-21D and MMD.
I was diagnosed at 32 when I had a big bleed and nCNV in my right eye it was before injections so l lost my central vision in that eye. From that point I had six monthly checks at a really good opticians with all the latest imaging and didn't go into hospital again until I was 54.
My eyesight has had flashes, shadows, weird circles and floaters which all required checking out which was why having a great optician available made it easier to get quick support.
When I started to have serious issues with my second eye I really fell apart, I too had counselling with the Macular Society and this really made a massive difference, I continued with therapy privately too until after about six months I felt able to stop. I've mostly learned to control the anxiety when things flare up. If you can also get onto the Working Age group therapy with the Macular Society that was also a brilliant experience.
I don't have your exact diagnosis but I have a long list of issues with both eyes but I'm now 55 still driving and reading ok.
Also, when I had my latest issue last Dec, there was a treatment to help manage it as medicine continues to move on and find ways to help solve these issues.
Hi Tracey, thank you so much for your reply. They thought mine was myopic degeneration at first. I’m sorry to hear that your central vision went in one of your eyes, so glad to hear you are managing well and were relatively stable for a number of years.
Having a great optician is so important isn’t it. It’s comforting to hear that you’re able to manage the anxiety better after the therapy and time, what have you found helpful? If you don’t mind me asking?
I’m hopeful that the medication and research continues for everyone going through these scary conditions x
On the managing anxiety, focusing on what I can do now rather than what I might not be able to do later helps. I was stressing about all the things I might not be able to do in the future rather than appreciating what I can still do.
I’ve made small changes that mean if things get worse it will be easier to deal with not driving and I keep up with technologies that will help if I start to struggle with reading - as there’s nothing to do to prevent or cure the overall condition it helped to find some steps I could take that would be potentially useful later - nothing worse than being told there’s nothing we or you can do to stop things getting worse.
The other thing that helped me was stopping researching and reading about the disease the whole time, I got educated about Macular disease and the eye in general but whilst I keep myself up to date on research I tend to stay out of social media groups. I found it triggered my own anxiety as you tend to hear more around things going wrong as people seem to drift away as things get better and thus you don’t see many positive stories.
I have something similar. Pretty myopic in both eyes but my right one has always been much worse (never corrected to see 20/20). Have noticed wavy lines which has caused great concern (would have been 38 at that time, almost 43 now). Went through a series of tests that showed fluid accumulation but not blood. I was advised to just monitor it and nothing has changed for a while for the better or worse. Diagnosed as chronic CSR but the specialist was not 100% sure. I do experience a blind spot with some flickering in the place where the fluid is more active (off centre to the side).
For now, like everybody, I focus on taking care of the good eye and keep as positive as possible. And keep hope that something might be able to be done to help in the future.
thank you for sharing your experience and I empathise with the wavy lines and distortions, they are frustrating. The flashing on blinking is a constant reminder which is my struggle I think- well currently anyway. Mine is also just off centre (3.5 millilitres apparently) in my right eye. Do you feel like your fluid pools and regresses then returns?
I am trying to look after my eyes by having a little indulgent eye care routine and get enough sleep though as I’m told that has an impact.
My fluid has been pretty stable, no decreasing or increasing. Your brain can make adjustments and you can get to forget and ignore some stuff once you stop focusing on it.
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Do I have macular degeneration 
..pls help info for my brother
CSR never goes away
Wet AMD or Central Serous Retinopathy?
Do I wait, go private or go A&E?
