wet eye macular disease can it be cured - Macular Society

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wet eye macular disease can it be cured

Pekingese profile image
61 Replies

Hi everyone, I’ve been having problems with my left eye for a few weeks now, seen the optician and she’s refured me to the hospital to see the eye specialist for Macular disease. Any straight lines are wavy. I’m feeling so anxious as the optician said I would have to have needles in my eye I’m so scared 😟 I’ve heard they put drops in to numb your eye? It’s the needle that’s freaking me out.

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Pekingese profile image
Pekingese
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61 Replies
springcross profile image
springcross

Hi Pekingese. I think most of us feel the same initially - I certainly did that's for sure, I was terrified but it wasn't anywhere near as bad as I thought it would be and I didn't have any pain, just a feeling of pressure so try not to worry. Easy to say I know but you should get enough anaesthetic drops to numb any pain and the injection is done so quickly - a matter of a few seconds and it's over. You can ask them to give you extra anaesthetic drops prior to the injection if you're that worried. Good luck and let us know how it goes. 🤞

Pekingese profile image
Pekingese in reply tospringcross

Thank you so much I’ve been a bag of nerves 😬 anything to do with eyes scares the hell out of me . I’m so glad I found this site . Ros

springcross profile image
springcross in reply toPekingese

I was too and was absolutely dreading it so I can well imagine how you're feeling about it and I'm sure the majority of the other posters on here would say the same too. The thing is, it's going to save your sight so that's what you have to keep in mind. x

Pekingese profile image
Pekingese in reply tospringcross

Thank you, it’s just the unknown scares you. Im just going to keep my self busy and try not to think about it. And your right as long as it safes my sight that’s the main thing.

springcross profile image
springcross in reply toPekingese

Yes, the unknown does scare you and the initial shock!!!

Pekingese profile image
Pekingese in reply tospringcross

Thank you again for listening to me you’ve eased my mind, I’ve never heard of anything like this before. Xx

springcross profile image
springcross in reply toPekingese

You're very welcome, that's what we're here for. xx

MKMG profile image
MKMG in reply tospringcross

It definitely isn't as bad as you would think. You are aware of the injection but it's definitely not painful and it's over before you know it. Keep breathing slowly whilst it's being done, then you're more relaxed. Ask if one of the nurses can hold your hand, that made a big difference for me.

RP1944 profile image
RP1944 in reply toMKMG

It’s painful for some of us. The anesthetic drops never work for me.

Pekingese profile image
Pekingese in reply toRP1944

Oh no I’m going to ask for more drops to numb my eye 😩

Shimano profile image
Shimano in reply toRP1944

Hi RP1944, The drops don’t work for me either. It was horrible. However, since receiving lidocaine injections instead it has been much more bearable. Do ask for them. Has literally changed my life as I lived in dread of my next appt . Good luck to you. We are just one of an unfortunate minority who are often not taken seriously because the drops do work for the majority.

RP1944 profile image
RP1944 in reply toShimano

I’m sorry to hear that the anesthetic drops don’t work for you either . Very good news that you now have lidocaine injections. I’m in Cyprus so not sure if my doctor will do lidocaine. Will have to ask. I’m in need of cataract surgery but very hesitant regarding anesthesia as if it’s the same as for injections I’m snookered. Best wishes to you.x

Pekingese profile image
Pekingese in reply toShimano

Oh dear me 😞 thank you for letting me know. We’re do they put lidocaine injections? And I will mention this to them. I’m just waiting for an appointment. I was at the eye clinic last Thursday for scans on my eyes and have to wait now for the eye specialist to look at them. Ros

Shimano profile image
Shimano in reply toPekingese

Hi Pekingese. Must stress that numbing drops work for most people and will probably work fine for you. Don’t know anyone who isn’t nervous for first injection and we got through it. So will you. Let us know how you got on. All the very best.

Pekingese profile image
Pekingese in reply toShimano

Thank you, 🙏🤞🤞

Pekingese profile image
Pekingese in reply toMKMG

Thank you I will definitely be asking her to hold my hand 😬

Engineer46 profile image
Engineer46

Hi Pekingese,

Seeing straight lines as wavy is a strong indication of wet macular disease (wet AMD). You can spot it easily by looking at things like lamp posts, the sides and tops of doors, anything that should be vertical or horizontal.

You ask if it can be cured and the answer is that it can be stopped from getting worse and the sight problems can sometimes be reduced, but you will probably still see straight lines as wavy, but perhaps only slightly wavy!

The important thing is to start treatment as soon as possible, or your sight will certainly deteriorate.

Others have explained their experience and mine is similar - no pain, just a little pressure, and the injection is over very quickly. You will need to have repeat injections for several months until the problem is under control. Usually these are at 4-8 week intervals.

To ease my own concerns when having my first injection I told myself that it is just a procedure that you have to undergo. I still tell myself the same thing every time and I never feel anxious.

As AMD is something that mainly affects older people (mine started when I was 65), it can occur at the same time that cataracts are developing. I found that, after injections had effectively stopped my wet AMD from getting worse, my spectacle prescription would keep changing and I spent a fortune on glasses over a ten year period, trying to keep my sight well within the driving requirements. I put this variation in prescription down to my AMD.

However, during a routine eye test, a high street optician said that my prescription problems were more likely to be caused by cataracts. I had both cataracts removed and the results were frankly amazing. The signs to watch out for are problems driving at night and difficulty reading faint text in poor light when others can read it easily. You may be told that the cataracts are not significant, but if they are affecting your quality of life, say so and the NHS should remove them. Just another "procedure"!

Best wishes for speedy treatment.

Paul

PS One thing they never mention is to take a pair of sunglasses with you when you go to the clinic. Your eyes will have been dilated (with eyedrops) and the world will look extremely bright when you leave the clinic, especially if it's a sunny day!

Pekingese profile image
Pekingese in reply toEngineer46

Hi Engineer, thank you for your response. I have all the above with straight lines they are wavy, I also have the onset of cataracts the optician told me yesterday. I wear contact lenses as well as my spectacles. I will mention when I get my appointment about the cataracts. Thanks again for the heads up about the sun glasses. I’m 71 and did think it’s old age 😁 best regards Ros

Catseyes235 profile image
Catseyes235 in reply toEngineer46

That’s really helpful. My eyesight actually improved (it wasn’t that bad but required glasses for TV and driving) to 20:20 for distance after first injections but since developing cataracts it’s got worse again. After your experience and advice I’ll wait until my cataracts are dealt with to check for needing glasses. I hope it is soon or will have to wait until after my other knee replacement!

RosMacularSociety profile image
RosMacularSocietyPartner

Dear Pekingese,

In the UK the NICE guidelines for the treatment of wet age related macular degeneration (wet AMD), are that from when the wet AMD is suspected (at the opticians) to treatment, should be no more than 2 weeks.

When did you see the optician? Have you heard back from the hospital eye clinic with an appointment?

We have injection buddies, volunteers who have had the injections and are willing to talk to anyone about to have one who is frightened by the thought of them. Please contact us direct if you would like us to arrange one of these for you:

macularsociety.org/support/...

I have copied links to two of our related booklets:

1. Your guide to AMD

macularsociety.org/media/ec...

2. Treatment for AMD

macularsociety.org/media/p5...

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Macular Society helpline

macularsociety.org

Pekingese profile image
Pekingese in reply toRosMacularSociety

Hi Ros, I was at the opticians yesterday to get this checked out, it started a few weeks ago. My optician has sent a refural to the hospital so just waiting for a letter or she said they might give me a call. The optician did say I would have to go weekly for the injections. Thank you for the links I will definitely have a read. Best regards Ros

RosMacularSociety profile image
RosMacularSocietyPartner

Hello Pekingese,

Did the optician do a fast track referral, straight through to the eye clinic, by passing the GP? If not, then they should have done.

It is important that you chase your hospital appointment. If you know which hospital you have been referred to, then you can ring them and ask to talk to the macular clinic (ophthalmology), and check if they have received your referral, and when an appointment is likely to be.

As explained, it is a 2 week treatment guideline for wet AMD. In general terms, the earlier treatment, the better the prognosis.

Please contact us direct if you would like to discuss this further.

Kind regards,

Also Ros :-)

Pekingese profile image
Pekingese in reply toRosMacularSociety

Thanks Ros, yes she did say she would fast track the appointment, and also gave me the number to ring if it gets worse in case it’s more than 2 weeks if I haven’t heard from them . Thanks for all the information. Ros 😊

Knitcat profile image
Knitcat

Hi Pekingese,

I was exactly the same as you last year. This site (especially springcross) & the advice from the Macular Society have been a huge support & a massive help to me. I can’t add any more but will repeat the advice to stay relaxed & take sunglasses. I’m having injections every 6 weeks & have one next week.

You will be fine, best wishes x

Pekingese profile image
Pekingese in reply toKnitcat

Hello Knitcat, I’m so grateful for all the comments everyone has been so lovely. Yes I’m going to try and relax 🤞 I hope it goes well for you next week. Best wishes Rosalyn x

Knitcat profile image
Knitcat in reply toPekingese

Thank you, Rosalyn, it makes a big difference to know you’re not on your own. Kind wishes, Angela x

ANO_Health profile image
ANO_Health

You are not alone. It is good to share with each other about our experiences can be very reassuring. I try and focus on the fact that these injections have saved my sight and continue to do so. I have one about every five weeks, though it does vary (sometimes longer inbetween). Please do keep in touch, and know we understand and care.

Pekingese profile image
Pekingese in reply toANO_Health

Aww thank you so much ANO that’s means a lot. I will let you know when I have my appointment. I know I have to think like that and not get my self to get to anxious . Kind regards Ros.

jwitts profile image
jwitts

Those injections are a miracle. I’ve been having them for years, and I agree with those here who say they don’t hurt. My ophthalmologist uses the drops and then also a small, swift numbing injection and we joke and talk when the medication is injected—which barely takes seconds. Some years ago there was no help for macular degeneration, now there is. Be good to yourself and try to relax.

Pekingese profile image
Pekingese in reply tojwitts

Thanks Jewitts , I’ll try to relax I suppose once I’ve had it done I’ll know what to expect. Hopefully it’s not as bad as I think it might be. 😬

Polly221pj profile image
Polly221pj

They put drops to numb it and its so quick its unbelievable. As soon as it touches your eye its done, no pain, no soreness, its NOT a bit like when you have an injection, they don't have to pump the stuff in like they do in your arm. One touch and it over

Pekingese profile image
Pekingese in reply toPolly221pj

thank you Polly that helps a lot, hopefully when I have it done I can look back and think that wasn’t as bad as I thought it would be 🤞

RP1944 profile image
RP1944 in reply toPolly221pj

The anesthetic drops don’t work for me, therefore injections hurt.

Pekingese profile image
Pekingese in reply toRP1944

Oh no 😥 I’m dreading it.

RP1944 profile image
RP1944 in reply toPekingese

Hopefully the anesthetic drops work for you.x

KDCH profile image
KDCH

hi Ros, not much to add in relation to injections. But while waiting dor your appointment, please check your eyes individually (important!) with an amsler chart on a daily basis. I was not instructed to do so and it nearly cost me the eyesight on the affected eye 🙄 Just a hint. If you see a black spot (not a floater, but a blocked out area) when checking, I would request an emergency appointment…

Pekingese profile image
Pekingese in reply toKDCH

Thank you for the heads up they don’t mention this at the Optician’s …

wanttosee profile image
wanttosee in reply toPekingese

I am with KDCH here.... I mentioned in a different post that my mom had wet GMD as you will get to know it by. I had been instructed to use the amsler chart and did daily for years. Still didn't catch it. I got the wavy lines and start of a spot in my vision. Once that happens you need to get it treated within a very short amount of time. Not to scare you but if you have been having this for weeks already I would get in to get treatment ASAP. I was scared also but the lines went away and so did the spot and my vision is as clear as it was before my diagnosis.

Pekingese profile image
Pekingese in reply towanttosee

I’m going to give the hospital a call tomorrow 😬 it was Wed gone I was Told it was wet AMD, the Optician said to give them a call if I haven’t heard anything within 2 weeks, or give them a call if it gets worse.

wanttosee profile image
wanttosee in reply toPekingese

Good idea. Be persistent.

wanttosee profile image
wanttosee

I had the same thing. Woke up one morning with wavy lines and blurry vision. My mom had it at 48 years old and she went blind, back in the 1990's there was no cure. I was able to see my doctor immediately and was told that if I didn't get treatment I could go blind in that eye within weeks. Treatment was a shot in the eye. I like you was nervous and of course my wife being a nurse had me watch videos of the treatment.....trust me, you don't want to do that. Anyway, they do numb your eye with drops and it is a small needle. You feel a small pinch and it lasts about 5 seconds. I was amazed at how easy it was. Tiny bit of pain and I recommend you get some good eye drops as that will help. Make sure they are preservative free....I use Ivizia, they work great. I had to get the second shot after 5 weeks and then the third shot 6 weeks later. So far I have been told it is a lifetime commitment and I am now at every 12 weeks for the shot. I have been told some people are able to quit the shots after about two years. One can hope. I would not wait to long before you get the shot though. My vision returned to normal but the longer you wait the worse it can be.

Pekingese profile image
Pekingese in reply towanttosee

Hi wantosee, thank you for replying I just found out recently. I went straight to the optician as I knew something wasn’t right it stared a few weeks ago. The optician fast tracked me to see the hospital specalist which I’m waiting to hear from. Are these drops prescription or can I buy them from the chemist ? Did you find after the first injection it helped ?

wanttosee profile image
wanttosee in reply toPekingese

Hi Pekingese. I live in the United States so they are not prescription here. You can actually get them on Amazon. Another one I use is Refresh and that is also not prescription. I get that one on Amazon also. Just cheaper on Amazon but any drug store should have them. I was told you just need to make sure they are preservative free. I did not notice a lot of help the first couple of weeks after the injection so that worried me a bit but a month later I got the second shot and I could see pretty clearly after that. The third shot was a month later again and I could see normal after that. My doctor told me it would get a little better at first but about two months before normal. Everyone is different though, you could be quicker. I read somewhere on here a couple of shots per week and I don't know where that happens, seems like a bit much. Like someone else mentioned here....sunglasses. They help a lot but you should get the ones that block UV light. Pretty much dark sunglasses. I wear them all the time now when I go outside. I have 4 different pair just to make sure I am covered 😀

Pekingese profile image
Pekingese in reply towanttosee

Thank you so much, I really appreciate your advice. I live in the UK and I will have a look for the drops on Amazon. Best wishes Ros

wanttosee profile image
wanttosee in reply toPekingese

One other thing. Check with site every once in a while. I was terrified when I first found out but just by reading what other people had to say and getting support even if online really helped.

Pekingese profile image
Pekingese in reply towanttosee

Yeah I’m bricking it, came as a shock I’m so glad I found this site it’s helped me so much, I don’t feel alone anymore. 😊

Pekingese profile image
Pekingese in reply towanttosee

Thank you for all your support means a lot .

SueMulk profile image
SueMulk in reply toPekingese

Hi. I’m in Scotland and I am given the drops when I go for the injections with instructions on how to use them. A separate bottle / tube for each eye as you have to be really careful not to get an infection after the injection. If you have any problems after the injection just give the clinic a call and they will advise you what to do. I have very dry eyes and have to use more drops than the standard recommendation after the injection.

My wavy lines disappeared but would come back when another injection was due. They have now put me on Vabysmo which lasts longer so only about 4 injections per year in one eye. The other has dried up and no longer needs regular treatment.

Pekingese profile image
Pekingese in reply toSueMulk

Some one else on here mentioned to watch out for any infection after the injections, and said they use eye drops to help . It’s good to hear you only have to go 4 times a year. Im waiting for my appointment hopefully soon. I live in Northumberland.

Just

Pekingese profile image
Pekingese in reply toSueMulk

Hi Sue, I’ve just read your post again and you mentioned the hospital will give me the drops ? Ros x

SueMulk profile image
SueMulk in reply toPekingese

My hospital does in Scotland. I think some of the people on here are not in the U.K. I’m not sure what happens in England. When you have your appointment you could ring to check with them if you are worried about it before going in.

Pekingese profile image
Pekingese in reply toSueMulk

Okay thank you 😊

ElviraKate profile image
ElviraKate

Hi Pekingese - there's such a lot of good advice on here ! I don't want to repeat it but here are a couple of other points. I've had injections in the right eye for about six years, my left eye followed three years ago. Both are now more or less stable and I get injections every four months or so, for which I thank God and the NHS.

I always ask for more anaesthetic and lots of irrigation afterwards to wash out any remaining antiseptic iodine or anaesthetic. When the jab happens you are looking way up (or down) into a corner and see nothing of the needle, but you will see the injection fluid gushing into the eye, a swirl of translucent stuff that disperses very quickly, sometimes a black air bubble or two that float around for an hour or so getting smaller and smaller until they disappear. Sometimes your eye can be a bit achey afterwards, even the next morning - I always take paracetamol afterwards and as necessary. Sometimes the needle will touch a capillary in the cornea and you get a surface bleed in the corner of your eye - it's not conjunctivitis and will be reabsorbed in a few days. It's a scary thing to say but you will get used to it even if you'll never look forward to it!

And the eyedrops I use are HyloTear, a new bottle every injection to avoid any infection (you can always use up the rest of an old bottle to clean the skin around your eyes). Amazon does good deals.

Pekingese profile image
Pekingese in reply toElviraKate

Thank you so much, I will know what to look out for now. Any information is good to know. Ros

Pekingese profile image
Pekingese in reply toElviraKate

Hi which HyloTear drops do you use, I’ve just been on line and there is three different ones, a gel or liquid drops ? Not sure which ones to order. Also an intense drops. Thank you Ros x

ElviraKate profile image
ElviraKate in reply toPekingese

Hylo-Tear Long lasting eye drops 7.5ml, made by Ursapharm, available at Amazon. Not gel and not Forte drops. The plain ones work well for me and are what Moorfields originally gave me after each injection. The Scottish eye service can't afford to do that!

Pekingese profile image
Pekingese in reply toElviraKate

Thank you 😊 I’ll order some now x

Catseyes235 profile image
Catseyes235

In the beginning my friends could always tell when I was close to an eye injection as I’d get quite distracted and irritable! After 7 years and many many injections I can safely say that the thought of the injection is much, much worse than the actuality. Actually the first one I had I felt absolutely nothing and was surprised I’d been given it.,! It was probably a year or so before I stopped asking if the nurse would hold my hand.(Don’t be afraid to ask). Now I do relaxing deep breathing. I don’t think the anxiety goes away completely but …that ‘thought’ lingers! Good luck!!

Pekingese profile image
Pekingese in reply toCatseyes235

Thank you Catseyes, I can’t stop thinking about it. I know I’m going to be anxious 😬 it’s just the way I am, hopefully it won’t be as bad as I think it’s going to be .🤞

Penelopeflower profile image
Penelopeflower

Hi Pekingese, please be assured your feelings are very natural and normal. I have been having injections regularly for around five years now, your eye will have plenty of anaesthetic to numb it well, all you will feel is slight pressure, tell them that you are nervous and they will take that into account, everyone is the first time but it really is not nearly as bad an experience as you imagine. Please also hold on to the fact that these injections help to preserve your vision, so always bear that in mind. Very best wishes to you, keep in touch, you will get lots of support on here.

Pekingese profile image
Pekingese in reply toPenelopeflower

Thank you so much ☺️ Best wishes Ros x

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