smiler60444 years ago

Hello, so sorry to hear this and a worrying time for you. Mr S is just over 2 years on with Eylea injections and heading to his 9th injection on Thursday. He too has been changed to 10 weekly injections and yes we thought that was positive. It has been 16 weeks since the previous injection due to mixed messages but we did speak to the Consultant during this time to verify the changes. It was confirmed that the bleed seemed to have stopped and the oedema in his eye has changed position. Mr S tests his eye diligently, more so as injection day gets closer and this morning for example he cannot see my face but it’s a gloomy morning and still early and he knows it will clear later. It does sound like lack of experience in casualty has not helped. I would ring the clinic to get an urgent review appointment - ours are very receptive and if that fails, ring your Consultants secretary for advice. Hope that helps and you get back into the system soonest.

Good Luck

From The Smilers

rosyG in reply to smiler60444 years ago

Thankyou very much. I will ring at 9am. Hope your husband does well

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smiler6044 in reply to rosyG4 years ago

Hello again, the Consultant did say no two case are ever the same and with a major bleed, sight can never be fully restored. Hang in there on the phone for a positive outcome and fingers crossed your Clinic staff are as receptive as ours.

The Smilers

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Hidden4 years ago

Hello rosyG. I agree, it is most confusing when doctors cannot agree on what they are seeing on the scan. It seems to me that the emergency doctor only "assumed" that you must have had another occlusion. It is true that injections are only beneficial for bleeds and oedema, but any sign of them should be treated very quickly. Unfortunately, this does not always happen.

In my case it only took 3 weeks after finding another slight build-up of fluid to a massive macular swelling with massive distortions. Despite going to the emergency clinic I had to wait another 9 days for the injection when it was due anyway. However, I am glad to report that now, 10 days after the injection, the distortions are now slightly less pronounced.

The sudden reduction in your VA is puzzling. Obviously, something must be going on in your eye and should be investigated as soon as possible. There could be a number of reasons for that to happen. I hope your phone call to the clinic will bring some results for you.

i

rosyG in reply to Hidden4 years ago

Thankyou and I hope you continue to get some improvement. I rang the hospital but apparently it takes 48 hours for requests to get to the appointment desk ( this is for urgent requests!! I’ll ring again tomorrow afternoon but I actually have my injection next Tuesday. Had been thinking it was in two weeks for some reason. I’m wondering if the vision loss is to do with dry eye syndrome. I seem to have developed this a bit since having injections but drops I use haven’t helped vision. I’ll see what the injection clinic say. There is one optometrist who is very good. My scan looked ok last time but she spotted a small amount of leakage on examination so think she is good. Thankyou for your advice. If it worsens I’ll just go back again!!!

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Hidden in reply to rosyG4 years ago

Hi rosyG, I doubt you will get your injection earlier since it is due next Tuesday anyway. There are just too many of us and too few staff. But if your condition gets much worse do go to A&E.

I also doubt that your decrease in VA is due to dry eye which may cause soreness, some blurriness and double vision. I get double vision because there is always a small pool of fluid collecting in both corners of both of my eyes, but it does not reduce my VA when I dry them.

I fully understand your worry - who wouldn't be worried? - and hope you get it sorted soon. Sending you a big hug.

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Driveninsane724 years ago

HI my advice would be to see a retinal specialist if your not seeing one now

eyesright4 years ago

Hi rosyg,

When I was having inj and trying to extend the time between my vision would do as yours has done ( sometimes over a few days but often within a matter of hours) and it always turned out that my oedema had returned. The vision changes depends where it has extended to. I have asked if I've had more than the original bleed and always been told no, it's just the oedema returned.

The missing letter may be due to where the oedema is ( I get the same, eg TEXT looks like TXT when it's extensive, I think near the fovea and that's when I ring my clinic in panic !).

I do have a small patch of permanent damage but no idea why it occurred when it did, maybe just cumulative from the returning oedema.

If your inj is next Tuesday I doubt you'll get an emergency appt at your clinic but do ring them to make them aware of your situation , esp the missing letter, in case they can fit you in sooner.

For me the time between inj lengthened then started reducing and they changed me from lucentis to eyelea, but this is your first slip back so may not continue. Sending you a hug, hoping next inj sorts it x

rosyG in reply to eyesright4 years ago

Thankyou Eyesright. I’m keeping my fingers crossed but was uneasy about two very different diagnoses. I hope it doesn’t worsen too much and realise we’re lucky to get the injections. I’ll post after clinic on Tuesday. It does help a lot to have your feedback. Thankyou

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eyesright in reply to rosyG4 years ago

I'm so used now to different drs saying different things but it is annoying and can be worrying too. Hope they explain why you were told different things ( when my optician sent me to hospital at the beginning he thought I had wetmd both eyes but after tests hospital said brvo only left eye, right eye nothing - I asked why optician thought otherwise and was told ' he's probably just being extra cautious'). Maybe that's what your young doc was doing. Will be interested to read your next post.

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eyesright in reply to rosyG4 years ago

Talk about different messages,,,just had my cataract preop and Dr gave me two bits of information that directly contradicted what other Dr had said! You just have to go with your gut I think.

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Rosalyn-helplinePartner4 years ago

Dear rosyG,

As already suggested on here, it may be worth contacting your ophthalmologist via their secretary and highlighting your concerns.

Kind regards,

Macular Society helpline

0300 3030 111

help@macularsociety.org

Bazza12344 years ago

I have CRVO and have now had 5 injections spaced one month apart. For the first time since the injections started , my edema has collapsed considerably ( it used to look like a volcano) but I am not sure that it has meant any improvement in vision through that CRVO eye. I have perhaps seen some change from terrible to very bad - but when i first got this I am almost sure that I could not see anything much on the TV through that bad eye (my good eye is 20/20) but lately I have been thinking that I can actually make out what is happening on the TV screen now through that bad eye. So maybe there is some improvement