Deterioration during lockdown: All, I hope... - Macular Society

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Deterioration during lockdown

Annsandra13 profile image
29 Replies

All, I hope you are all coping through this difficult time and have avoided contracting COVD19. I am wondering if anyone has had a deterioration with their condition during this time?

sadly I have and had realised 8 weeks ago a slight change and wrote to the clinic asking for a scan but was refused, but had an injection in my right eye at that time but not my left eye that had improved on the last scan weeks before.

I knew my sight was deteriorating and the last 2 weeks I had a very noticeable change and contacted the consultant saying I need a scan urgently so yesterday I found there was significant damage to the Macular on my good eye.

I had both eyes injected and will pray the next 3 months will see an improvement.

I do feel very upset that they wouldn’t scan me 8 weeks ago I tried to get a private scan but was unable to. I sincerely hope no one else has encountered this.

Wishing everyone well

Love Ann

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Annsandra13 profile image
Annsandra13
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29 Replies
thom3patty profile image
thom3patty

So sorry u r going thru this I have seen a change in my eyes thru Coronavirus but I am hoping it’s from stress and working from home using a laptop compared to computer a lot of eye strain I did have a scan about 2 weeks ago and all showed good

Annsandra13 profile image
Annsandra13 in reply to thom3patty

Thanks for your reply Thom3 patty please all was good with your scan, I spoke to consultant about using iPad laptop he said it would not have caused the deterioratin but I agree the eyes do get tired. Stay well

Love Ann x

thom3patty profile image
thom3patty in reply to Annsandra13

Thank you actually I am looking for a laptop that has a touchscreen so I can spread it out my Mac doesn’t do that

Annsandra13 profile image
Annsandra13 in reply to thom3patty

Yes it is very helpful, I use notes to write my email in large blac bold writing, so I can see it more easily I can then copy and paste ont an email or message also can alter brightness.

Good luck best regards

Ann x

springcross profile image
springcross

Hi Annsandra. I'm really sorry to hear about your eyes, it's such a worry isn't it. I have a similar problem to you in that I was supposed to be having injections to my left eye every five weeks and steadily building back up again to six weeks etc but it seems that once I get over five, I get leakage again. In spite of this, they rescheduled my injections to every eight weeks and despite me complaining about it, said there was nothing they could do about it. I have had two injections eight weeks apart now and I know that my eye is quite bad again. The problem is that I have not had a scan since February so I dread to think of what the condition of my eye is like now. How long do you have to wait until your next injections? It's so ridiculous that for the last two years I have been having these injections and my eye was improving beyond all my dreams but, as far as I'm concerned, they might just as well have flushed the money away because they have just let it go again - such a waste. I was also quite shocked at the attitude of the doctors at the Eye Hospital too, pushing it off like it was nothing and to add insult to injury, my last injection really hurt and my eye didn't start to react to the anaesthetic until I was being driven home. I hope all goes well with your eyes and that you get great improvement from your injections yesterday. Take care. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

Hi Springcross,

thanks for responding, I am sorry you are having deterioration too and really hope thy will return to the previous status in the coming weeks, this is the big worry we have?

As you say it doesn’t make sense and I agree with your comments, waste of time and money and surely there were ways urgent cases could have been dealt with more effectively.

I really pushed for a scan 8/weeks ago and although I saw the person who gives scans was in the hospital they refused.

I totally agree about attitude as I was in shock when I realised how badly affected my good eye was but like you they just push you out without any reassurance it seems they want us in and out as quick as thy can.

What always surprises me is that as soon as the injections are over the electric bed we lie on is pushed upright within in seconds, basically we are out the door within 10 seconds,

yesterday after outlet drops , 2 injections and 4 large black floaters ,one good injection and one bad, I was out in the corridor in a daze quite frankly in shock trying to find my way out!

I really wonder if they realise the impact on us emotionally and no doubt like me you go in in a positive state grateful for treatment.

I really hope after this delay in treatment we will recover the sight we had before, I am down for monthly injections on both eyes.

Thinking of you, sending healing

Love Ann x

springcross profile image
springcross in reply to Annsandra13

Hi Ann. Thanks for your response. I am really glad you have got every four weeks, hopefully this will put you right again. I have noticed this morning that my eye has started to show humps again, this always happens when there is leakage. I see that when requesting an earlier appointment you saw the person who does the scans before who still refused, I actually spoke to one of the Opthalmologists on the phone when I was trying to get in earlier before my last injection and initially, he was going to get me in a week earlier and if it was leaking, said I would then be brought in every four weeks after, but that he would ring me back after he had checked which day for me to go in. When he rang me back (within a very short time), he had changed his mind. He said there were no appointments available and I would have to stick to the appointment given and that he was sure I would be fine - his attitude had completely changed and he even said that my next appointment after that would not be for another eight weeks also. I think I will ring on Monday to ask if I am going to have a scan and if not, then I will have something to say about it. You mention an electric bed - we have a chair which tilts back but not many nurses tilt them back very much at all and I have been wondering if that's why the anaesthetic drops don't work like they should as the injection is usually in the upper left of the eye but if you are not tilted back properly, the drops surely can't reach that part too well and that may be the reason that some people feel the needle - just a thought. All the best to you and I hope your eyes will soon improve. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

there are so many aspects that need to be considered during the procedure, I do lie flat and the drops go in fine, it is all down to technique and keeping the routine right once in the room.

Making sure all is sterile no one talking during the injection, making sure thy are using the right type of injection(Eyelea) is mine, I always ask for sufficient anaesthetic and a wash out after but rarely get the wash outI

It was th first time the doctor presses my eye to ask if I could feel the pressure before the injection, she was very good but like other injectors they don’t administer the left eye well.

It was my intention to get in touch with Pals or the trust this time if I was refused a scan, I said it was an emergency!

Please make sure you do all you can to get your scan as it sounds like you need it.

So wishing you all the best.

Love Ann x

springcross profile image
springcross in reply to Annsandra13

It's the same with me with the wash out Ann. I always ask for it and I do get it now but it's very very limited and it hasn't always been like that, I didn't used to get one at all until I started to complain to the opthalmologist about my very sore eye.

I am going to ring the hospital on Monday and ask if I will be having a scan and if they say no, then I will tell them that I haven't had one since February and I think I need one. All the best to you. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

I hope all went well today and you received a scan, keeping my fingers crossed

Love Ann

springcross profile image
springcross in reply to Annsandra13

Hi Ann. My injection isn't until Thursday but I have rung them today and been told that scans are back to normal now. I was a bit unsure as she sounded vague so I rang back this afternoon and she confirmed that they are now doing the scans again before injection. I really am relieved about that. Thank you very much for asking, that really is very kind of you. All the best. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

Oh that’s good news, I am pleased for you

Good luck on Thursday I’ll be thinking of you

Love Ann xx

springcross profile image
springcross in reply to Annsandra13

Thanks very much Ann, I appreciate it. xx

Shimano profile image
Shimano in reply to springcross

Dear Springcross. My consultTion for a scan also cancelled for telephone consultation. I was pretty upset and phoning got me nowhere. However, a week before I got a letter for a face to face consultation because they had put on an extra clinic. Great relief. Totally agree that, apart from the personal trauma of loss of sight, money spent on previous treatment just wasted. Sorry you had such a painful injection. They are really rotten. Go well.

springcross profile image
springcross in reply to Shimano

Many thanks for that Shimano, I appreciate it. I had my injection this morning actually which went reasonably well - to be honest, I have had worse. The best bit is that I saw the opthalmologist too and I had a scan, much to my relief as I have not had one since about February time or maybe earlier than that. The scan has showed that I do have leakage behind the macula as I suspected so next time, I will have the injection in six weeks not eight which I am pleased about.

I am really pleased you got your appointment after all and I hope that all went well. How long will you have to wait for your next one?

Annsandra13 profile image
Annsandra13 in reply to springcross

I am so happy to hear you had a scan, and although deterioration you are scheduled for your next injection, keep well eat your greens and eggs! I’m struggling t find a consultant in a France in our rural area, so with my serious deterioration I am wondering If it is safe to go in case of problems, especially such a long journey by car!

Let us hope we can all see some recovery after this long period during lockdown.

Sending love and healing

Ann x

springcross profile image
springcross in reply to Annsandra13

Hi Ann. Many thanks for that. I didn't realise you lived in France. Do you have your injection done there or do you come here to get them done and do you drive yourself? xx

Annsandra13 profile image
Annsandra13 in reply to springcross

I live between France and the UK, but have my treatment in the UK as the hospitals are quite a distance and not easy to communicate.

No I’m not driving my hubby likes to drive I do drive in the UK but not at the moment .

Are you driving still.

Xx

springcross profile image
springcross in reply to Annsandra13

Hi Ann. I have only driven twice since last July when I started to get problems with my hands and was diagnosed in August with Rheumatoid Arthritis - it hit my hands really bad - they became so swollen and extremely painful. I drove a couple of times when they returned to their normal size but it took it's toll on my hands so my husband drives all the time now. I hope to get back to it when the RA is properly under control which is not yet unfortunately. All the best, take care. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

Oh bless you, it may be worth testing for this protein FHR4 that effects AMD and immune system causing inflammation, I am going to . My health is very up and down and I am sure I have a weakened immune system. Will let you know what I find out. But it doesseem possible . Let’s face. It if we can find any help.

I hope you condition settles soon.

Love a Ann x

springcross profile image
springcross in reply to Annsandra13

Hi Ann. I would be very interested to find out how you get on about that. Many thanks for your kind remarks.

My eye is sore this morning and a bit bloodshot as I had another bleed yesterday, I always seem to get a bleed when the regular injector does it, I have only ever had that problem with one other injector in two years. I'm not so sure the injection was that successful either as I can still see humps on straight lines ocassionally and that has always been gone the day after injection. I just hope I don't have to go chasing the Eye Hospital again to get it checked out. Hope all is well with you. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

Oh dear, it is always something, I had an awful blood shot eye for a month so I know it seems it’s just unlucky, I do wonder how accurate the injection point needs to be, was this your right or left eye.

If you ar concerned an you know it is inferential then contact eye clinic before the weekend.

Let me know how you go, are you using comfort drops without preservatives ?

Thinking of you

Ann xx

springcross profile image
springcross in reply to Annsandra13

HI Ann, thanks for your reply. It's my left eye. I will see how it is by the end of the weekend and hope it settles down. There was an overuse of iodine again, it makes me so angry as I'm pretty sure you can sterilise the eyelid and surrounding skin without having to use so much. I usually do use dry eye gel but not for the first couple of days afterwards. I took some Paracetamol this morning as my sinuses on the left side of my face and head were affected by it which usually happens and so far, it has given relief. Thanks again. xx

Annsandra13 profile image
Annsandra13 in reply to springcross

I thought it maybe your left eye, this is the most difficult injection to give if the are not ambidextrous, I tend to use evolve drops after all eye drops and after injections and this may help you going forward.

Take care and get help if needed.

Love Ann x

Shimano profile image
Shimano in reply to springcross

Hi Springcross. My appt did go well in that there was no Leakage on the scan. I have had eight injections and this appt was eight weeks since the last one so I was pretty apprehensive. My bad eye is getting very blurry which I think is very bad floaters and also build up of protein on my replacement cataract lens. The young female doc was an absolute gem and offered me the laser for the protein build up right then. As my right eye is still pretty good I held off but will obviously have to have it done soon which may help. My next appt is in six weeks for a scan........hopefully. Now the opticians are open again can go there for a scan if needed. Having a consultant who has awareness of the anxieties that come with the possibility of loosing sight, and therefor independence, makes a huge difference. I do hope that the movement towards telephone and zoom consultations doesn’t mean personal contact becomes a thing of the past. By the way I have found your blogs really helpful and encouraging. So thanks and go well.

springcross profile image
springcross in reply to Shimano

Many thanks for your reply Shimano. I am really glad to hear that your appointment went well and that your next one is for six weeks. I told my opthalmologist about my eyes going misty intermittently - he said that the cataract in my left (amd) eye is getting a bit bigger (when he first told me about them (both eyes) he said they were only small and that I wouldn't have anything done about them for a few years) and that's what is causing the intermittent mistiness, also I have a few floaters but he said there was nothing they could do about that. I also have dry eyes and PVD so probably they all take their toll on the eyesight - bad news doesn't usually come alone does it. I was shocked at how well I read the eye charts, I was actually dreading it as I thought I would fail most of the lines but I could see them as clear as anything apart from the bottom two really small ones, which to me didn't make any sense given what my eyes have been like lately. I hope all goes well for you at your next appointment. Take care. xx

Shimano profile image
Shimano in reply to springcross

Thanks Springcross. already had both eyes done for cAtaracts. Thank goodness as my good right eye is main vision. You will hopefully find big improvement as I did. Dry macular didn’t really affect my vision much. Praying right eye doesn’t go wet as well. All the best.

Shimano profile image
Shimano in reply to springcross

Hi Springcross. Spoke too soon. Received another letter 3 days later putting back august appt till end of October. This makes 3 months since review and 6 months since last injection. Things are going badly wrong in the nhs for anything not virus related. Will go to optician for a scan and just have to kick up a fuss if shows further leakage. Eye problems are stressful enough without further hassle. anyway currently on a barge on union canal enjoying wonderful scenery so parking worries for now. All the best to you.

springcross profile image
springcross in reply to Shimano

Hi Shimano. I'm really sorry to hear that, what an absolute nuisance. They keep doing this and it really is infuriating. I'm glad you're enjoying yourself on the barge enjoying lovely scenery. Is that your part of Scotland? I hope when you have your scan at the opticians that all will be well, this will save you the hassle of contacting the eye hospital. Take care. xx

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