How do you know there's been a bleed?

[ElviraKate]

I've been attending a retina clinic at Moorfields every five or six months to monitor hard and soft drusen. Last July's visit did not reveal any change or damage to the retina. About three weeks ago I became aware of a small blotch just off-centre of focus in my right eye that was like an after-image of a sun-flash, which seemed to refresh itself in blinking like an after-image, but which didn't fade and go away. A day later, looking at the Amsler grid with my right eye, I saw a wiggle in a line of the box just left and up of the central dot. A couple of days later, when this had not disappeared, I went to Moorfields A&E. A scan showed no abnormalities, no bleed and no fluid. The doctor thought that the wiggle could have been produced by one of the drusen, but was puzzled by the after-image effect, and wondered if it could be an optical migraine. I do get optical migraines, and had thought it could be connected, but it doesn't behave like the beginning of a migraine, which starts right on the focal point and extends for about half and hour and then disappears.

Does anyone else have this 'after-image' effect? Does it coincide with a distortion in the Amsler grid?

Today, looking at the grid, it is more than just a wiggle in one line, but a kind of small transparent bubble. I shall keep monitoring, perhaps I should go again to A&E? Does a bleed happen without it being visible on a scan?

I am so depressed by this. I am trying to design our Christmas card, and what with Brexit and this I am at a loss to know what to draw, and even less confident that I shall be able to complete it.

[RosMacularSociety Partner]

Dear ElviraKate,

Please contact us to discuss your concerns.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

[curioso369]

This describes what happened to me, 2 months ago. Out for a walk, I suddenly had that "flash" feeling (like someone took a picture of me using a camera and flash) and that post image, kind of a translucid shadow appeared after, particularly after blinking. I went to an optometrist and got referred to an ophthalmologist and then to a retina specialist... some think it is "just" a CSS or CSCR, while the other thinks it is wet AMD.

I have not started any treatment yet.

[ElviraKate in reply to curioso369]

Thank you very much indeed for replying. It seems from the lack of response here that the flashy after image is a rare thing. I am going to the Moorfields retina clinic tomorrow morning for full tests and I hope to have some answers as to what it is and what the prognosis might be. Please let us know when you yourself know more (I know what CSCR is, but not CSS?) - and every best wish for the least serious outcome.

[curioso369 in reply to ElviraKate]

Sorry.. meant to write CSR. Some doctors mentioned CSCR and others CSR, for the same condition.

In my case, Im struggling to understand what I have, although I suspect it is indeed wet AMD.

Went to 1st ophtal and was told - This is CSCR - go home, relax, do yoga and it should go away in 3-4 months

Went to 2nd ophtal (did not like the service with the 1st one, and had no follow up) and was told the same CSCR.. .but recommended - just in case - to see retina specialist

Went to 1st retina specialist and was told - Looks like CSCR... lets exam further... then came back suspecting wet AMD and recommended injections. I was destroyed that day...

Went to 2nd retina specialist and was told - this is absolutely NOT wet AMD... lets test further and review the results with another retina specialist... 2nd lady came in, saw the results and seemed unsure, but just in case recommended the injections.

So 3 ophtals telling me this is something that does not require treatment, and 2 retina specialists suspecting it is a condition that requires all the treatement available in the world.

I suspect Im in denial and am therefore hoping for a case of misdiagnostic, miracle, etc.

The last few days have been tough as nails. Im in Canada.

[ElviraKate in reply to curioso369]

Not in Canada, but I am absolutely in the same place as regards denial, miracles, etc. I know I have drusen which can also cause distortion and am hoping against hope there is no bleed. A CSCR would be a relief, I think, though I am female and older than is usual for that. Did your opthalmologists do the OCT scan that looks beneath the surface of the retina? If they did they should be able to see fluid or a bleed. When I was first seen at Moorfields four weeks ago they could not see anything, but since then the distortion is worse, hence my going back there tomorrow.

Meanwhile I am trying to complete a pen-and-ink drawing which is proving extremely awkward, as my eyes try to work out which is an optical wiggle and which is the ink line.... I can only see if I focus on it, not optimum for an artist trying to see the whole picture!

Keep us in the loop.

[ElviraKate in reply to ElviraKate]

Just an update. I have just been to a nurse/technician clinic at Moorfields - this is where you are referred to from Moorfields A&E if the triage there thinks it isn't an absolute emergency. They tested both eyes for vision, pressure, and then the OCT scan. Vision and Pressure were OK, and the scan reveals nothing obviously wrong, no fluid or holes or bleeds. You can see the bumpy profile of the drusen and there is one particularly bumpy one which may be causing the distortion. The scan will be referred to the consultants and I will hear within 48 hours as to whether treatment is necessary and what happens next.

The nurse/technician was really helpful, rather more so than the doctors I've seen - though perhaps I have better questions now I've found out more about the condition. She showed me the subretinal layers in my scan, and showed me what a scan looks like when there are bleeds or fluid - essentially there are holes and discontinuities in the layers. She described how I would know whether there had been a bleed - inability to read print or a sudden increase in the distortion accompanied by black blotches. She was also very clear, though, that this was only her opinion and that the doctors would be able to interpret the scan in more detail. She couldn't explain the 'after-image' effect.

The distortion is still there and is an incredible nuisance. I'm hoping against hope it stays like that and doesn't get worse. Curioso369, I am hoping for you that it wasn't a bleed but either just a CSR or perhaps an effect of drusen as well, and I hope you don't have to have injections (the idea of 'injections just in case' is a really scary one!). Please let us know how you get on.

Kate