Confusing consultation today! All views we... - Macular Society

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Confusing consultation today! All views welcome- sorry for long explanation but hoping to pick your brains please

rosyG
rosyG

Hi All,

I am in the second year of Eyelea injections for branch vein retinal occlusion and have been moved to 10 week intervals- very encouraging!1 The first 10 weeks was fine, on the second 10 week assessment, the scan looked clear of oedema but on eye exam the optometrist mentioned there was some leakage so she didn't want me to go longer than 10 weeks, I am now at week 8 of the third 10 week gap and have been concerned about my vision for some days. The Amsler grid has slightly wavy lines but do get this sometimes- the change is more in vision- the A in Amsler, for example is partly missing when I look at the chart and whereas I could see car number plates from the window after my first injection I now can't. I can still read a little with the bad eye- much better than when I had the occlusion at the beginning but not as well as in recent weeks.

As I was concerned, I took myself off to eye casualty ( as per instructions in letter given after injections) as I thought maybe oedema had returned and my injection needed to be brought forward. I could only read the top three letters of the eye chart- have been doing much better than this previously.

This is where it gets strange!!

I had a scan and exam by a doctor who looked quite young, She told me that she thought I must have had another big vein occlusion and that injections wouldn't help and the damage would be permanent. She was pointing out things on the scans but they didn't make much sense,

She said she would get her consultant to come and see me.

The consultant examined my eye and looked at the scans, She relied on the younger doctor to align the scans ( she was comparing , on the computer, with the scan from my last injection appt) but said there was no sign of oedema. I asked about what the first doctor had said and the consultant said there was no sign of a further occlusion and no bleeding.

She could see that the change to only reading 3 letters was a large change and said she will ask for a retinal clinic appt before I have my next injection. I have no idea when the appt will be and no idea why my sight has deteriorated if there is no oedema-

I'd be grateful if anyone else has had this experience as it's rather unsettling!!

Thank you in advance

13 Replies
oldestnewest

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
rosyG in reply to smiler6044

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

smiler6044
smiler6044 in reply to rosyG

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

Hidden
Hidden

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
rosyG in reply to Hidden

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!!!

Hidden
Hidden in reply to rosyG

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.

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

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
rosyG in reply to eyesright

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

eyesright
eyesright in reply to rosyG

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.

eyesright
eyesright in reply to rosyG

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.

Rosalyn-helpline
Rosalyn-helplineAdministrator

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

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

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