Update: as and when regimen: I managed to... - Macular Society

Macular Society

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Update: as and when regimen

15 Replies

I managed to get an emergency eye examination by appointment. Well, although at reception they knew I was booked in, they had no other details - no files either. It took them 15 minutes to decide what to do with me.

Anyway, I had a scan which showed a drastic build-up of fluid, the macula being swollen up as it had been on day one. The Dr said he would write a letter (I suppose via internal delivery) to my consultant, asking if the injection could be brought forward. Which consultant? I see 4 different ones at various times. Anyway, the emergency Dr said it was unlikely that this would happen with the weekend coming up. By the time a slot could be found it would not be far from my existing appointment. When I asked about the risk of further damage due to waiting, he told me it is hard to say whether 8 days would make much difference.

Treatment there and then or the day after? Forget it at our emergency eye clinic. Although all staff were very friendly and polite, I don't think I'll go down that route again unless I have completely lost my central vision. Hope that never happens. At least I have seen the state of my macula and feel a little easier about waiting. Only 8 days now.

15 Replies

Oh ayayay, so sorry to hear your oedema is bad again. All I can offer is that I've been there more than once and each time the inj brought me back and will likely do the same for you x

Not impressed with the lukewarm response of your em eye clinic! Wonder if it would have been different if your general vision was worse?

Though I suppose they treat you like a new pt and have 2 weeks to treat you?

Fingers crossed for you and sending a hug x

in reply to

Thank you eyesright. In the past the build-up of fluid has been more gradual. I just thought that if such drastic change in my vision can take place in a couple of days , what will it do in another 9? The suddenness was worrying. I am not usually a person who panics, but I really was concerned. Anyway, I am glad to say that I have noticed no further deterioration since yesterday, so I dare say I will last until the 1st of September if I have to, which is very likely.

I know you have been there many times and I appreciate you sharing your experiences. This is only my third time in two years of it happening and each time after a number of injections it dried up again. I accept that it is likely to go on happening, but as I said, it was the suddenness.

Hope all goes well for you and a big hug to you too.

Such unnecessary palaver over a procedure which in itself takes seconds.

in reply to

True, it was quite a palaver to start off with, but eventually it got sorted. The Dr who saw me must have been able to get hold of my details as he was looking at my previous OCT on the computer, comparing it with my present one. But I am not sure the sterile room was in operation. There seemed to be no one around, though I dare say, in certain cases they would have had to use it. Anyway, thank you Rennatk for your concern.

ironbrain profile image
ironbrain

Clear explanation to the patient of their condition, counselling when needed, copies of scans emailed to patients, opticians with OCT to make regular scans (particularly for the over 55s), treatment within a few days if not within 24 hours, when is it all going to happen?

in reply toironbrain

Thank you ironbrain. I do get regular scans, or should I say 'irregular'? Anything between every 4 to 8 weeks, depending on how things are going with me. The perfect service you envisage would be great. I suppose it is a bit of a postcode lottery what kind of service we receive. However, I am not complaining. Without the help I have been receiving from my clinic I would very like have lost the central vision in one eye already. I have to accept that I very like will not get my treatment until the assigned date, which is only 8 days away.

ironbrain profile image
ironbrain in reply to

I already have lost nearly all the central vision in one eye. With clearer information and/or some jpegs (or whatever) of my scans and some counselling at the time I first went to emergency I might still have some central vision in it and the same problem in my right eye might have been detected before it bled. With OCT equipment at the optician's (cost: ~£50,000 to ~£150,000 new; from about £15,000 second-hand) maybe I'd still just need to worry about my presbyopia. Maybe.

I think we just have to accept the point in history at which we live – I don't know how fast we should or should not expect progress to come about.

in reply toironbrain

I am so sorry to hear you are so much worse off than I am, ironbrain. Sadly there are too many patients who will say "if only...' and suffered the consequences. All we can do is plod on and hope for the best. I am sending you my very best wishes.

alalex101 profile image
alalex101 in reply toironbrain

Or you could work to make changes in your healthcare system.

ironbrain profile image
ironbrain in reply toalalex101

Big organization, many toes easily trodden on ...

IvyRose2 profile image
IvyRose2

Hi Ayayay pleased you have been seen, I am sorry the fluid has built up again, unfortunately Bank holiday slows everything down and only skeleton staff on. Hopefully the injection will start to work again soon and it will gradually go. I try everything eye exercises, putting my pillows higher and eating all the eye health foods. I often wonder what makes the fluid come and go, I wish I could magic it away. Sending kind thoughts and best wishes for you.

in reply toIvyRose2

Thank you IvyRose. you are very kind as have been many other fellow sufferers. The support has helped me through a number of low moments and no doubt, will go on doing so. Bless you all!

2468G profile image
2468G

Hello there ayayay.

I feel your pain. It's a horrible feeling when your sight starts deteriorating again. You can't help but panic.

Glad you got seen at A & E but as it's a big build up of fluid that has happened quickly you would like to think it could be treated quickly. They wouldn't leave you with a broken bone. There isn't much worse than sight loss in my opinion. It's always an emergency.

I too am waiting til early September for next injection after last scan showed slight fluid build up. I'm worrying it may increase over time. Just hope yours doesn't if it's already significant.

I wish you and everyone on here with similar worries the best of luck. 2468G

rosyG profile image
rosyG

Hope all goes well- sorry to hear this Ayayay

in reply torosyG

Thanks rosyG. Got over my shock now. I'll be OK till I get my next injection. Hope everything is fine too.

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