Wet Macular Degeneration: Hi there, I am a... - Macular Society

Macular Society

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Wet Macular Degeneration

squinty profile image
squinty

Hi there,

I am a 68 year old woman and I have recently been diagnosed with Wet Macular Degeneration in one eye and dry in the other. At first they Western Eye said it was Extrafovial choroidal neovascularization, which is on the outer rim and not ready for injections, but yesterday i had a second private opinion from a guy called Kashif Qureshi at the London Eye Hospital in Harley Street who told me that it was extremely urgent that I had the injection that day. I rushed over to the Western Eye and had my first Eylea injection yesterday afternoon. Wow, I didnt know what to expect, its really scarey. I had a bad reaction probably because it was the first one. Im ok today but last night after the injections was very frightening. The doctor who saw me gave me lots of positive feedback about these injections so Im living in hope. I also have something called Charles Bonnet syndrome which are hallucinations. I asked the private doctor about them and he said hopefully they would get less and less after the injections kick in. Its nice to be on this site and hear all about my fellow sufferers. Gotta be strong.

16 Replies

Hi Squinty, thank goodness for the second opinion. It's not a nice procedure but you will see there are lots of positive experiences here so can be confident that it works so it's worth it. You don't say what the bad reaction was but if it caused an uncomfortable pressure spike they can give you something to avoid that next time. Keep your chin up!

squinty profile image
squinty in reply to rooky17

well Rooky on reflection I didnt have much of a bad reaction, just the shock of people telling me its a doddle and its certainly not a doddle. The only real bad thing that happened was I was completely blind in the injected eye for a couple of hours. I rushed back to the hospital and the pressure was fine. Just a bit of the reaction of the iodine and all the stuff they put in. I now know what to expect and hopefully the second injection wont be so bad. Thanks for asking, Im trying to be positive, the lovely lady who gave me the injection was very reassuring so Im just getting on with it. Loving this site xx

me too the injections improve sight for 35% according to my surgeon here in the U.S. it did mine.

andy1955 profile image
andy1955Macular Society

Hi Squinty,

I am sorry to hear about your recent experiences.

Some people to experience bad reactions after an injection. The Macular Society have a 'factsheet' on the subject, please see the following link;

macularsociety.org/sites/de...

Charles Bonnet Syndrome is a nasty condition, hopefully as your treatment has started, the hallucinations may stop or at least reduce in frequency. Please see our booklet on the subject;

macularsociety.org/sites/de...

If you would like to have a chat with our helpline, please call 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Helpline

Macular Society

squinty profile image
squinty in reply to andy1955

Thanks Andy, Mr Qureshi from the London Eye did tell me that these hallucinations would probably stop after the injections kick in. I live in hope, Im a positive person so hopefully Eylea injections will help me. Im at the early stages but its rather frightening to know I have the dry AMD in the other eye.

Hi Squinty, just sending you a hug and wishing you all the best with the next inj and going forward.

For many people it seems to be a doddle but not for some of us (I think we are all on this forum!) lol. I can say though that it does get easier the more you have and the more you come to trust the med teams.

Take care, look forward to hearing how it goes for you x

Aaaaaaah thanks Eyesright loving this site, ill keep you all informed xx

I think I can claim fame having had 43 lucentis injections in my right eye!! Most months I need an injection and on the odd occasion when I don't need one, I'm the happiest girl leaving the hospital!!

I am pleased to report that I have never had any complications but always discomfort after each injection. I have however had the odd few when I have hardly had any after effects. I put this down to the skill of the Doctor/nurse who injects.

Iodine has a lot to answer for!! I strongly believe that this burning sensation when the anaesthetic has worn off is caused by the iodine. Some doctors are more generous with iodine than others!! This burning sensation, this feeling of grit in your eye... I hate them!!

I consider myself lucky to be able to have the treatment and also that my left eye is good.

I have had a short spell of suffering with anxiety but cannot say whether there is a link. I am now well. Human as we are there is always this feeling of apprehension & butterflies in the tummy before each injection. The staff at the eye clinic at Singleton hospital, Swansea do a fantastic job. Thank you all!!

squinty profile image
squinty in reply to 123derlwyn

Hi derlwyn 123 on reflection not such a bad reaction but more discomfort as I didn't know what to expect. I've only had one, next one on 22 August. That feeling of grit in the eye is the worse but let's hope it does the trick eventually. Wow 43 injections I'm impressed. I have dry amd in other eye but vision is still good and it's not too bad in my infected eye at the moment. Loving this site. Let me know how it goes xx

123derlwyn profile image
123derlwyn in reply to squinty

Hi Squinty, good luck for the 22nd. Let us know how things progress. I will keep you updated.

squinty profile image
squinty in reply to 123derlwyn

Will do darling we all Gotta support each other xx

Hidden profile image
Hidden in reply to squinty

Hi

I had my first injection yesterday and nobody mentioned a gritty after effect. I was convinced that i had something in my eye and during the night in rural Australia it was hard not to panic.

This site brings great relief.

Next time I'm going to get an appointment as late in the day as possible, come home, have dinner and go to bed. No pain no gain is the old saying. .....

eyesright profile image
eyesright in reply to Hidden

Hi, medsec2000, there are posts on here about after inj pain you might want to read.

My tips are take 2 paracetamol an hour before inj; ask clinic for a good washout; and if grittiness persists use sterile eye drops such as hypromellose or hylotear to rinse and sooth eye yourself. Not all inj give the same feeling after but its up to you to advocate for yourself. In extreme cases they can change the iodine for chlorhexidine which may be less irritant. Good luck going forwards.

Hidden profile image
Hidden in reply to eyesright

The gritty feeling is infinitely better than blindness. After a 2nd visit i was told that the bleed was 75% reduced and a further injection next week should control it. That will happen next week. I can cope with gritty!

Thank you for your advice. I have a late in the day appointment and will go to bed afterwards.

I had been lead to believe that Lucentis injections into the eye are not painful, and have been surprised to find that they are... I recently had my second injection, and retired to bed with painkiller afterwards. However, I'm so grateful to have these expensive injections on the NHS, and hope cuts don't mean they will be stopped.

squinty profile image
squinty in reply to Sukie1903

Dear Sukie I've got my second injection on 22 Aug will do the same. I'm sure nhs wont stop funding for this. I'm so grateful as well for these injections. Keep in touch and let me know how it goes and if you get any improvement xxx

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