My experience

[sophie8196]

Until last year, I had never heard of Macular Degeneration.  During my annual eye test, I was told that I had damage to the back of my left eye.  I was asked if I had noticed straight lines being wavy, to which I answered, no.  I was told that if this happened I should get help immediately.  A few months later, I did notice this was happening when I looked at things with each eye separately.  We were about to go on holiday so I went to see my GP to ask her advice.  She did a few minor checks and said she didn't think it was anything serious and to go ahead with the holiday and see my optician when I got back, which I did.  The optician I saw was really on the ball and immediately got onto the hospital who very quickly gave me an appointment.  

I was talking to my daughter in Australia on Skype telling her about this.  She said, you haven't got Macular Degeneration have you?  I said I didn't know what it was. When I did a search on the internet I thought it quite possibly fitted the systems I had.   I downloaded the Amsler Grid chart and the lines were all wavy!

After tests at the hospital eye clinic. I was given 3 appointments for injections.  A month after the last injection I had my first monthly check and the doctor said the scan looked good and the fluid had gone.  I was pleased but told him I now had the same problem with the right eye.  I had an appointment for the dye test and was told I needed injections for that eye.  After reading posts from other members on this site, it then occurred to me that at no stage have I been told I had Macular Degeneration and what it means.  It was only from research that I deduced that I had the wet version when I was told they would make appointments for injections.  

I think I have been quite brave with the first 3 injections and lucky that the gritty soreness only lasted for about 24 hours.  However, the last 2 visits have not gone very well at all.  Last month I had injections in both eyes and really suffered for about 4 days with gritty streaming eyes.  On Thursday last week, I did tell the doctor who was reviewing my tests, how bad it had been the last time I had injections.  I was told that the injections make you eyes dry and to use tear drops, 5 minutes after the antibiotics.  I then went to have the injection in my right eye - and still it's not back to normal.  Apart from the gritty soreness, I have shooting pains, on and off,  over my eye. I am not at all happy about having a different doctor each time for injections.  Do some have a better technique than others?

I am grateful that help is available but it seems to have taken over my life.  I now realise that this is what my father must have had but in those days treatment hadn't been discovered.  Someone, mentioned that maybe the elderly don't get told about MD because perhaps they think they don't won't to know.   I'm 83 and often wonder where we got our information from before the internet.

[maryparry]

Poor you to be left in the dark so long. I think in the past people were just told they were losing their sight and as their was nothing to be done, they had no choice but to accept it. I am wary about putting drops in my eyes after injections. I don't allow my eyes to come into contact with anything for the first 3 or 4 days as infection is a big issue. Ask your Doc for eye-gel. Good luck!

[gillmoseley]

Your reaction to the injections is not uncommon but most people seem to be less affected. I am like you! The cause may be any of the following: heavy handed technique, overuse of iodine,  overlong exposure to air while the eyelids  are held open (causing the slightly toxic anaesthetic and antiseptic drops to dry and not be washed away by tears), size of injection needle and reaction to the anaesthetic (there are about four types). Try to work out which may be the culprit but also talk to your consultant.  Quick, deft injections work best for me and I did use to need to ask for eye drops. Sometimes my injections would have nasty side effects for up to a week. Some left no side effects at all!  I have had  about 35 injections but am now stable. No injections for neatly a year now. Thank goodness for the injections though!

Good luck!

Gill

[andy1955 Macular Society]

Hi Sophie,

I am so sorry to hear about your wet macular degeneration and the lack of information that you were provided with.

The Macular Society have been in existence since 1987 and we supply opticians and hospital eye units with our literature so that people can be better informed. One of our missions is to raise awareness of macular degeneration and ultimately to find a cure through funding research.

We are a membership society and more details can be found on our website macularsociety.org/ or by calling our helpline 0300 30 30 111

Best wishes

Helpline

Macular Society

[Hidden]

Hi Sophie, firstly, sending you a hug ! 

Secondly, have you actually been told you have wetmd? I don't have it but I do have oedema, wavy lines etc and the same injections - there are other conditions with similar effects so you should ask them for your diagnosis in writing (they should have written to your gp with info).

Thirdly, talk to your eye clinic about the discomfort. They can give you more anaesthetic and/or change the antiseptic iodine(cause of the grittiness) Gil is right too, if they take a long time the eye dries out which causes shooting pains and teariness afterwards. My consultant says no drops after inj for at least 24hrs longer if possible - I try to wait 3 days as don't want to risk an infection. Your gp can give you soothing drops. I now use HyloTear which work very well .

Yes, having diff drs each time is difficult and there are definitely some better than others! We have nurse practitioners also and they have been very good, seem to care more about you as a person.

Anyway, best of luck going forward. This forum is very supportive and the Mac soc are brilliant, well worth you checking their website out.

X

[sophie8196 in reply to Hidden]

No, I don't remember anyone telling me what the diagnosis is - just that I need injections.  I will ask my GP about the HyloTear.  I don't know if the Bath hospital has any nurse practitioners but I haven't had one so far.  The nursing staff have been really lovely and caring.

[Hidden in reply to sophie8196]

Hi sophie, if I were you I would definitely ask for the diagnosis as then you can be clear on the potential future impact of your condition. It does seem likely you're right but in my own case optician thought it was wetmd in both eyes but hosp. discovered it was a branch retinal vein occlusion with macular  oedema (basically a stroke in the eye), left eye only.

[sophie8196]

What can I say except  a very  big thank you for all your comments and helpful suggestions.   The hug and welcome has made me feel better already.  Thank you for taking the time to tell me about your experiences.  X