Deteriorating eyesight........... - Macular Society

Macular Society

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Deteriorating eyesight...........

19 Replies

Hi everyone, I had my first anti VEGF injection this morning, it was s anxious about it, but it was better than I expected. I have a medium to large static black blob ( lower left eye) and a feeling of a foreign body/grit in injection area, runny left nostriltoo, my eye is getting very sore.. It's the hottest day ever recorded in the UK and feeling lethargic.

I was diagnosed with Diabetic Macular Edema 3 weeks ago, with more deterioration in the left eye in those 3 weeks. I also have cataracts in both eyes, but can't have an operation as I already had pressure, Glaucoma, in the right eye and the pressure has increased even more so now I am on Monopost,eye drops x1 per day as well as Timolol x 2 per day.

As my eye's have deteriorated so quickly, is there hope ?

Take care all

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19 Replies
kohai profile image
kohai

Hi autumnsunset,

The scratchy feeling will wear off within 48 hours after each injection. It's your inner eye lid feeling where the needle went in. I get it every after visit too.

The black blob is also normal, though may not always appear. Many can see what looks like a thick black polo mint shape. This also wears off within the first 48 hours post injection. Again, the black blob/thick circle may not always be there after injections. The feeling of having a bit of grit in the eye(s) for me, happens after every injection (which is why they ask we don't rub our eyes), but the black blob/circle stopped appearing after about the 6th injection.

Any leaking/over-watering of the eye, from my own experience has just been the remains of all the drops put in it before the injection.

After 48 hours after the injection, if you're still concerned, there should be a phone number for the eye hospital on your letter, they'll put you straight through to a staff nurse who will go over your concerns with you. Please do ring them though if it gets too much to handle. The first injection after effects do vary with people, and they're happy to help if you're worried about anything.

in reply to kohai

Thanks for your message, it's not as bad as it was yesterday,👍

springcross profile image
springcross

Hi autumnsunset, I love your avatar 😁. The large black blob (which sometimes looks like a black polo mint) is the injection fluid (that's what I was told) which will eventually disperse although sometimes it takes a couple of days with me but not always and I don't always get it.

The soreness in your eye is probably due to the iodine they use as an antiseptic to reduce the risk of infection and the feeling should be gone within a day or two. If it continues with each injection, you can ask for them to use less iodine or use another type of antiseptic.

If the discomfort is still there after a couple of days, I agree with kohai, that you should ring the telephone number you should have been given in case of problems and have a chat to one of the nurses and they will advise you what to do.

I can't answer your question about whether there's hope or not as that really is a question for a professional so maybe you can have a word with your ophthalmologist/consultant at your next appointment. Good luck. x

in reply to springcross

Thank you, it's not my cat, I love that avatar, it's cute but cheeky. My eye is feeling better today, not as painful as last night. 🙂 Many thanks for your helpful advice 🙂👍

springcross profile image
springcross in reply to

I'm glad to hear that. All the best. x

tallyho profile image
tallyho

Oh bless you. I too have DMO, I am glad the injection itself went better than you thought it might. The black blob is just air and will go away the gritty feeling is from the injection after the anesthetic runs out. There is support group for those with DMO and we have a meeting tonight at 7 pm with a guest speaker who is a consultant ophthalmologist. There is a whatts app group too for those with DMO if interested in both or either please let me know. The details about the group are below. It’s a really supportive group where many are in the same position as you. I really wish you well.

macularsociety.org/about/me...

in reply to tallyho

Thank you for your message, I don't go out much at night,( I'm not an night owl lol) but maybe I might ttry o go to the next one. I will look at the link, many thnaks 🙂

tallyho profile image
tallyho in reply to

The meetings are all in zoom just so you are aware, we don’t meet F2F so people from all of the country can attend. Hope things feel better today for you. Please if you have any questions I am sure someone will be able to answer them.

in reply to tallyho

Many thanks I will try next month

magicman229 profile image
magicman229

Hello autumnsunset,There is more than hope, I think things will get better. We have better meds now, better equipment, better knowledge, and better doctors. The nurses have always been angels.

I don't have DME, but I do have wet macular degeneration, and so I receive the same shots as you do. I too had a kind of rough time with the iodine antiseptic, until I read on this site to ask whoever administers the injection to flush your eye with a weak saline solution or distilled water. Ask the person who preps you to tell the doctor that, beforehand, and then ask the doctor prior to the injection, just to make sure they understand. This reduced the post-injection discomfort by 85%, which was a God-send.

Keep the faith, autumnsunset. There are lots of us out here supporting you, because all of us had that first injection. The first injection is almost all the time the worst because of the anticipation, and the unknown.

I agree with the others who replied to you about the other symptoms.

We're thinking of you. Things will get better.

in reply to magicman229

Thank you for your message, all the messages have been so helpful and supported, Everything has been happening so quickly recently, it shook me a bit. Take care

in reply to magicman229

Thank you, that's handy to know about the iodine the pain was awful at times yesterday, but better today.

kohai profile image
kohai in reply to

Be aware you may not get the same after effects after each injection. When I first started with injections in both eyes every four weeks, and for 48 hours following, my house looked like it was filled with smoke (I even asked next door to check for me). I didn't know the foggy vision was a possibility. I know, as many, if not all do here just how anxious and scary that first injection is. No matter how it's all explained too us, even in great detail, there's still that internal fear of the unknown we have, so you're definitely not alone feeling that. I know I still do and I'm on injections every six weeks now.

I do understand to an extent how you're feeling with regards how fast your eyes deteriorated. I was told 30+ years ago mine was dry macular degeneration and how it wouldn't affect me till I was in my 80's. I was 53 last year when wet amd was found by my optician. Even though I was seen at the eye hospital within 8 days to start the injections, I lost the central vision in my left eye within 5 months. Bear in mind, while we can all relate to things you're now experiencing, the stage our eyes are all at differs. My right eye is still going strong and reacting well to the injections. Maybe/what if I'd seen an optician sooner, maybe I'd still have central sight in both eyes, but we can't live by "what if's".

Also, what I did, even before my left central sight packed up, I started looking at household gadgets on the Macular Society website.. though I may never need a talking clock, watch, talking microwave/grill/oven etc, I'd rather get the hang of how to use these gadgets while I can still see what I'm doing.

It's just something to consider and it gives you back the power over your life and future. If your eyes respond well, that'll be really great news, if it doesn't, at least you'll be more prepared. Please do let us know in 24 hours if the blob and scratchy bit in your eye has cleared up xx

in reply to kohai

Many thanks, I have thought of looking for visual aids, but................ I didn't want to jump the gun so to speak. But, being prepared is really the best thing to do.My eye was feeling better by late afternoon and the blob has gone ( there's an old film isn't there, was it Steve McQueen that played the hero ?)

I noticed yesterday that when I read, I'm an avid book reader and a knitter too) that the the middle of texts are more faded now, I use my magnifying glasses with the light on, but even that can be a strain to see things. I am feeling so tired now, even during thday, which isn't like me, I'm an active person and like to be doing things during the day and being independent too..

I'm feeling angry, upset and frustrated at the same time, but trying to be positive, even though I don't really feel like it right now.

Finding this wonderful community has been so helpful ❤️

kohai profile image
kohai

I'm glad it's cleared up now, and you have a better idea of what to expect post injections. The blob may not always be there, it could be the scratchy bit and foggy vision. The best thing is once you have your next appointment, try not to arrange anything for 48 hours after. Once people are aware of what happens and what you feel/see or can't see during that time, it's pleasantly surprising how many are happy to accommodate.

The tiredness, is that in general or tired eyes?

Many of us experience the anger, frustration and being upset. We're going through something that over time affects and changes our lives and other than attending injections and preparing ourselves for what could come, feeling helpless at not being able to stop it is a really awful feeling. We all do learn to accept and live with it, but there are times I myself feel frustrated at my failing eye sight and not being able to do the simplest things .. like putting nail strengthener or polish on my nails without it going over my fingers, because with or without glasses, I can't see them properly.

With close up work like reading, knitting, ask your optician or phone the Macular Society to find where your nearest 'Low Vision Specialist' is. The low vision assessment person can suggest many different devices to help you. The Macular Society can also tell you where your nearest Macular Society meeting group is, so you can either have calls with them or go along too I formal meetings (covid rules permitting).

Again, thank you so much for your very helpful message. I will ask my Optician's when I next go into town.regarding the low vision specialist.I do find my eye's get tired, but maybe some of the tiredness is due to lack of sleep, due to the hot weather and lack of sleep pre Anti VEGF injection.

I only paint my toe nails in the summer, but I can imagine it can be difficult to do. Lots of things to think about.

Many thanks

Engineer46 profile image
Engineer46

Sorry with this late response but I've only just seen your post.

You should have been given some "Viscotears" or similar eyedrops to use several times a day after the injection, to ease the "scratchy" uncomfortable feeling. If not you should ask for them next time.

The black blob is an air bubble and there may be more than one or none at all. They usually disappear within 24 hours. The aim of the doctor is not to inject any air, but the amount of fluid injected is so small that it is hard to avoid a little air being injected too. It has no adverse effect. Note that the air bubble is actually at the top of the eyeball, but you see it at the bottom because the image on the retina is inverted.

For the first few hours after the injection your vision will be somewhat "cloudy" or out of focus. This should also clear within 24 hours.

Best wishes,

Paul

in reply to Engineer46

Thank you for your helpful message, the pain was very intense at times, I was grabbing ho;d of the top of my hair as it was happening and I will ask about eye drops when I go back in August. Many thanksTake care.

Engineer46 profile image
Engineer46 in reply to

It does sound as if your discomfort was extreme and the fact that they didn't provide you with eye drops is somewhat disconcerting.

In 12 years and too many injections to count, the only time that I've had much pain after the injection was recently when a new doctor used copious amounts of saline to wash the iodine out of my eye after the injection. That time I had to use the drops frequently to ease the irritation. Previous doctors had never done this kind of washing, but simply cleaned the iodine off of the skin around the eye. You can be allergic to iodine, in which case they use a different antiseptic, but iodine isn't otherwise an eye irritant, as far as I am aware.

So I would insist on having the eye drops to take home and, if you did have extensive eye washing after the injection, ask if they could avoid doing that in future.

You might also want to have a look at a post I made on my experience of injections at the Western Eye Hospital in London:

healthunlocked.com/maculars...

Best wishes,

Paul

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