'Historic' WMD??

[yotboy]

I was diagnosed with WMD ( left eye) 4 years ago and have had more than 30 injections of Eylea/Lucentis. My sight is 20/20 (6/6) in both eyes and apparently stable though there is still some fluid visible on the scan. The period between injections is increasing as the fluid has not gone away but also has not changed for several months.

My diagnosis and treatment followed a dramatic change over 24 hours and a visit to a local optometrist. I was lucky, and was quickly 'sorted'.

4 years down the line, I remember ( I think) that the left eye was never that perfect before all this started. There was distortion in the left eye that I ignored because it was minimal and the right eye compensated for it.

I am thinking that the treatment I have had has 'dealt with' the condition that led me to Moorfields A&E and taken me to the state that existed before - slight distortion and 'residual' fluid.

Of course, there is no information available for the left eye before the deterioration that led to treatment.

I would be interested to hear from others with similar experience.

Web searches for where to discuss this have proved fruitless, the accent as ever being on treatment or support.

I am thinking that continued injections will never get rid of the remaining fluid - which is OK by me as my sight is 'good', but in no way do I want to give the impression that I don't want any more treatment!

[maryparry]

Hi, I have had wet amd for 4 years and my consultant has said there is no more that can be done for my left eye and that even if I bathed in eyelea nothing would change the stubborn nature of the amd in that eye. I felt very down about it but underneath I wondered if it had all been a waste of time. Such an unpredictable disease. I am also interested in whether having very sensitive eyes...to light etc and having migraine were all part of it.Any ideas?

[yotboy in reply to maryparry]

Thank you very much. Like you, I have no idea about the causes - I'm not sure anyone has!

[Catseyes235 in reply to yotboy]

Smoking is implicated. If you think what it does to arteries then what it could do to fine blood vessels at the back if the eye is not good. Diet seems to be important too. I've been taking MacuShield Gold as doc's think despite a good diet with lots of green leafy veg, a concentrated supplement is advisable. After 2 injections my AMD was drying really well. Difficult to say if just luck ir the pills are helping.

[Ayayay80 in reply to maryparry]

So sorry that they have given up on your left eye. Have you actually lost central vision in that eye altogether? Hope your other eye is still alright.

As for the light-sensitivity, it is certainly one of the symptoms of AMD amongst other eye conditions. Wearing sunglasses in bright light may help you or if you wear specs get the reactive type which act like sunglasses.

Best wishes x

[Ayayay80 in reply to maryparry]

Sorry maryparry, my reply to you went into the wrong place.

[maryparry in reply to Ayayay80]

I now always wear uva and uvb sunglasses now but I gather that most of the damage is done before the age of 18. My feeling is that my eyes were always hyper-sensitive to light and that strobe lighting or flickering fluorescent lights gave me migraines. I am convinced there is a connection and that we need to make parents aware so that they protect the kids eyes. I think that we might be able to predict those children who are likely to get amd.

[yotboy in reply to maryparry]

Are you possibly replying to the wrong post?

[Ayayay80]

Hello yotboy

I am pleased for you that your eyesight is so good. 6/6 or 20/20 is normal. At the beginnnig I was denied treatmentI even though I was shown on the scan a massive swelling on my left retina and the presence of fluid. The the doctor called it definitely wet AMD. My VA was 20/40 at the time. A consultant a few days later insisted on calling it dry AMD. 4 weeks later my VA had dropped to 20/60 and I had my first injection in Oct 2016. After my 5th the injections were halted until required, as the fluid, I was told, had dried up. My VA had improved from 20/60 to 20/40, but the episode has left me with some doubt how much I can trust the consultant. Do they really tell you the truth, the whole truth and nothing but .....

After a 5 months break from inj (which was wonderful) I was told by another consultant that the fluid had returned and I am now on my second set of treatment on a 6 weekly basis. My VA had dropped again to 20/50. Have you ever had a break or has your treatment been a continuous procedure over 4 years? As I see it, if the fluid were only residual, surely it should be absorbed and dry up eventually. The fact that it is still there seems to point to a small amount of fluid still leaking into the reservoir between the layers of the retina.

As you say, such detailed information seems to be unavailable. I suppose we are not to know too much. Your consultant may or may not enlighten you. Hope your questions will be answered. Please let me know.

[yotboy in reply to Ayayay80]

Thank you. I shall post an update as things move on. The point I was trying to make on information being unavailable was that there would (of course) be no scan of what I considered to be an acceptable condition- my sight was 'OK'. You don't get a diagnosis until you report a problem, and as far as I was concerned there wasn't one!

[rosyG]

Problem is you may get more oedema without the injections?? Did you ask at Moorfields if that would happen?

[yotboy in reply to rosyG]

Thanks - it may well be that my thoughts are utter poppycock, which is why I asked if anyone else had a similar experience.

[rosyG in reply to yotboy]

No I can see your logic- let's see if anyone has had this!

[maritravel]

I've just had my fourth injection (with a ten-week space between 3rd and 4th (because of staff leaving I think) but I'm not sure what to think. I had calcium deposits in the affected eye before WMD was diagnosed, these had been removed six months previously and the after pain for two weeks afterwards was not something I'd wish to have again. The sight-test shows that my vision is quite good but my eyes refuse to work together. I can see with either eye quite well, but I get double vision if I don't cover one up. I have not been able to drive since March last when I had the first procedure, and I am still not driving, a big loss as I live in an area with bad local transport. I wonder if anyone else has had a problem like this?

[Ayayay80 in reply to maritravel]

Hi maritravel

Although my experience is and perhaps cause is different from yours - I had awful double vision many, many years ago, long before eye injections were done. I have no idea what had caused it nor did the hospital staff as at that time I had no treatment, no medication, in any form or shape. I had to cover one eye stepping up and down kerbs as I did not know which was the correct one. I did not want to look at anything. Nothing was done about it, not even a proper eye examination. It lasted about 3 months and gradually my vision went back to normal. perhaps your double vision will sort itself out too, although I appreciate that it may be different for you, having an eye condition. Double vision may be temporary or permanent if the cornea is damaged or scarred.

[alalex101]

The injections did nothing for the fluid on my left eye which has been present for a few years. My vision fluctuates 20/40 to 20/80. Considered PDT but decided to wait since vision is enough to still work and drive. Cause of the fluid may be CSR or CNV. Had differing opinions from 2 specialists. It is hard to always have clear understanding of the processes that led to our current state but we will be best to look to the future and obtaining the best treatment available. My best to you.

[yotboy in reply to alalex101]

Thank you - all grist to the mill.

[rosyG in reply to yotboy]

Hi again,I was speaking to a friend who is treated for wet AMD in Epsom this week. She had 3 injections two years ago and has just completed 3 more- the first 3 were successful and the oedema has just come back gradually- so had a two year break in between- did you ask the doctor what they expect for you?

[yotboy in reply to rosyG]

Thanks - I'm not anyehwere near the stage where I will query what the doctors are doing. I'm just trying to collect info from people who have had a similar experience. So far no-one has come up with anything remotely similar.

[JJnan]

Hi Yotboy, interesting that you said you always had weak eyes....i had measles at 10 yrs of age, which led to me wearing glasses and always light sensitive and sensitive eyes in general, 2014 started seeing wavy lines while on hol, 2 weeks later saw optician who faxed eye clinic marked urgent as i had a bleed i left eye.....had course of lucentis which didnt work then onto eylea...had inj every 8 weeks since with no break ...also started in right eye 1 yr ago......i often wonder if there is a connection .x