failed but tried: Hi all who are interested... - Macular Society

Macular Society

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failed but tried

Chittychatty profile image
17 Replies

Hi all who are interested in eye matters. also anyone interested in matters "caused" because of Covid.

I already had eye issues but due to last years nightmare continuing into this year, I did not get my regular hospital eye checkup. I knew late last year things weren't good. so rang and emailed hospital (infact I'm under 2). one fobbed me off, other never responded. Consequently I developed a full depth macular hole. Liverpool reluctantly agreed to operate. Anyhow I was warned it probably was too late, you have to deal with it immediately for good outcome.

Looks to me now gas bubble is decreasing that it hasn't worked and in fact apart from no central vision, there are more wavy lines than before. maybe things will improve in time but I doubt it.

Moral of the story is, if you notice say a door edge looking wavy and especially any loss of central vision GO immediately. I had no choice I'm yet another victim of bl...dy covid. I think a study should be done of all the people with life changing/threatening illnesses since March 2020. The truth should come out.

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Chittychatty profile image
Chittychatty
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17 Replies
springcross profile image
springcross

I'm sorry to hear this Chittychatty, that's really upsetting. I agree wholeheartedly with what you say about a study should be done of all the people with life changing/threatening illnesses and also that the truth should come out but I doubt it ever will, more's the pity!! My eye (wet AMD) was made worse because of Covid and I was made to wait too long in between injections in spite of me ringing and telling them what was happening with my vision, which caused more damage to my macula than was there before receiving treatment. I hate to think of how those with conditions far worse are feeling, it's just awful.

Chittychatty profile image
Chittychatty in reply to springcross

How right you are. I fully understand Covid was high priority but everything else that you could die of also was just shoved under the carpet. And people like us with life altering events also ignored. I coincidentally just got an nhs text via my gp saying if you feel unwell treat yourself or ask a pharmacist as A&E and gps are too busy. I'm not often stuck for words but I'm speechless. So there has to be something going on that we aren't being told.I wish you well with your sight.

🙏

tallyho profile image
tallyho

So sorry to hear this. A study is being done.

Shimano profile image
Shimano

So very sorry to hear how lack of available treatment has affected you. Am aware it could happen to any of us. The lack of any meaningful contact with, or support from, GP services is also part of the problem. I have been having injections, now for both eyes, for two years. Whoever my GP is doesn’t even know about my condition as it has all been dealt with via a wonderful optician to whom I will be forever grateful. To have no sense of connection with the first level of medical assistance is frightening, especially if you live alone. A good GP service should have been pushing to get treatment for you. As it is, it’s DIY all the way. All the best to you.

DevonianA profile image
DevonianA

The treatment you get seems to vary so much on where you live. I am so grateful that my Wet AMD treatment has carried on as usual apart from a short break at the beginning of the outbreak but even then if you were worried you could contact the emergency dept. of our Eye Hospital. This is the case now between injections. You should be given an emergency number or immediate access to A and E at your eye hospital. Well done Bristol who have been there for us if needed. PS, Don't even bother with GP service, they can't do anything.

JJnan profile image
JJnan

I'm so very sorry this had happened to you .....so many suffered with delayed operations to....your right about GP's !.!...persoally our eye clinic didn't stop appointments for those who needed monthly inj like myself......although i had to ring in plenty of time and explain my situation to get the correct timing for my app.....luckily to, if i have to ring the secretary who can deal with app's is very understaning and gets me an app on time ..

IF i had a problem now and couldn't for some reson get my app...i won't hesutate to go to A&E......i do hope things get better for you ..good luck x

Chittychatty profile image
Chittychatty in reply to JJnan

could be this region giving poor service. I agree, from now on I would go to A and E but last year I think most people were scared to go. I wish I had listened to my instincts.

Catseyes235 profile image
Catseyes235

I had a 17 week gap between injections due to a stroke in May last year so couldn’t have had injections anyway though clinic continued eye treatments throughout Covid. One eye deteriorated to worse than it had been at the beginning ,( black over central vision and extremely wavy edges) the other remained perfect. After nearly a year the bad eye after 4 weekly injections, now 8, has almost caught up with the other eye and has little distortion. Hopefully yours will improve in time.

Chittychatty profile image
Chittychatty in reply to Catseyes235

I am sorry to hear that happened to you but it is encouraging to know that injections can make an improvement. unfortunately they tell me macular hole and macular disease are not connected. It's hard to understand. I've now got shimmering lines appearing. its impossible to use phone or ipad or look at window without covering bad eye.hope your sight continues to improve.

Catseyes235 profile image
Catseyes235

Just read up on Macular hole and seems there are couple of treatments so I do hope you can get help as soon as possible . Do you only have one eye clinic available? You should be entitled to choose another specialist. Bit left field but have you got a regular optician who would make a recommendation if you said you were looking into the possibility of glasses? It was somewhere like Vision Express that got my doc to make a referral. Good luck.

Chittychatty profile image
Chittychatty in reply to Catseyes235

I'm actually on an oncology list at Liverpool which is reputed to be the best in the country. I suppose I could ask for another but I trust them up to this time. the disaster was caused due to no check ups last year and into this year. This hole developed during this time and if it had been caught early would have been totally resolved. I did ring and email many times with concerns but got no reply. I didn't even know it was a hole developing until they saw it eventually. I count myself lucky that its my loss of one eyes' sight and not my life as so many unfortunate people have with cancer etc.I go for another check up soon. I'll post another update after. keep well and thank you.

Catseyes235 profile image
Catseyes235 in reply to Chittychatty

Luckily Covid hasn’t affected my treatments ..thyroid, AMD, and now biopsies inside mouth last week ( probably something simple but just in case ...still awaiting results). I sincerely hope all goes well with you.

Chittychatty profile image
Chittychatty in reply to Catseyes235

I wish you well for your results. Best wishes

Jill13 profile image
Jill13

Sorry to hear of your eye troubles. I have had two macular holes One in each eye. Had dry macular degeneration before that but was told by eye specialist that a macular hole is not related to macular degeneration at all. Mine were operated on as soon as discovered and didn’t change sight I live in Australia

Chittychatty profile image
Chittychatty in reply to Jill13

Hi. You were unfortunate to have in both eyes. I'm sorry you had that experience. Did you mean the op didn't work on either eye? I've not only got the wavy lines back but worse and also silvery shimmering like there's a lot of gunk in there. Good wishes for better vision.

Jill13 profile image
Jill13 in reply to Chittychatty

No both macular holes were cured by the operationsbut I still have,macular degeneration, now dryin one and wet in the other but so far remaining stable

LMor profile image
LMor

Hi Chittychatty. I’ve just read your post. I’m sorry you have been through this. I have been diagnosed with two macular holes which I am very concerned about. My optician did an urgent referral to which the hospital completely ignored. I went to A&E at the eye hospital a few weeks later because my vision has got worse and I’m seeing weird lights. The optician sent me there. They did the scans etc and confirmed the holes & said I will definitely need an operation as it’s been there for a while and I’ll get an appointment. I’m still waiting just for an outpatients appointment. Everywhere you read it says this is better treated the earlier the better. I’m calling the hospital every week to see if there’s an appointment for me, but nothing!! It’s so frustrating and concerning and I have no idea what to do next. How are your eyes now?

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