Macular issues - any advice or any experts on here?

[SpanishFly]

Hi everyone,

around 18 months ago, I had a routine eye test/check, at which I was given an Amsler grid to look at - in my left eye there were distortions to the top left of the dot, and in my right eye there were distortions to the bottom right. The optician looked a bit panicked, and gave me a leaflet on AMD, and I was told to read up on that, and return again in a year for another eye test.

I had a friend of a friend who works in an eye surgery clinic, so he brilliantly booked me in for an appt to have proper detailed images taken of my eyes.
2 of the surgeons had a look at the images. They said that neither of them were experts re the back of the eye, and so they referred me to a specialist at the hospital for more info.
When I had went for my appt, the specialist dilated my pupils and had a look at my eyes, but also looked at the images previously taken at the eye surgery, and said that her feeling was that it was not AMD, but that she suspected it was something similar to having freckles on the skin - like anomalies on the macula.
I was reassured hugely at the time, but nothing more was really explained - eg presumably there are signs from these images which are unique to AMD, which meant she was able to say that she didn't think it was that?
However, I am much more aware now of the distortions, and my anxiety is making me analyse every little thing about my vision - and every perceived change, floater, etc.
I can't seem to shake this awful feeling that it is getting worse, but I don't know whether that's just me overanalysing it all as the thought of losing my main vision terrifies me.
I had never previously done the Amsler grid test, so we have no idea if these distortions have always been there or not - and whether I am only more aware of them now that I know they are there, if that makes sense.
I was unable to have my annual eye test in April, for obv reasons, and will make an appt asap now that the opticians are reopening.

If it has got worse, would the optician be able to see anything different from the last time - or is their equipment not adequate to see enough detail?
Also, given that there's no actual treatment for AMD, is there any benefit to me even knowing whether it is getting worse, or should I just try to shake off the anxiety around it?

I have shaken up my diet a lot, eating 5 portions of F&V a day, inc a green smoothie, and I have started taking Macushield Gold daily too. My anxiety is also being dealt with.

Any further info which could reassure me in some way would be much appreciated.

Thanks

AMD is nearly always picked up at the optician. When I worked at an eye hospital, many of our referrals for AMD came from the optician. Remember that AMD (if it’s even that) often progresses very slowly. There’s two types and there’s treatment for the wet type, not the dry type sadly. Get a second opinion if you’re not convinced though.

Hi,
I'm in a very similar position...
Had eye test last December - they were offering oct scans for £10 so I thought "why not?"
It picked up 2 "lesions" in my left eye.
I also had a grey central spot and right sided distortion on the amsler grid.
I cant really read with my left eye anymore even with my glasses on.
Cue referral to eye clinic, several more oct scans, US scan IG and FA angiography (just before lockdown so lucky in that respect).
I have sub retinal fluid and drusen.
They also suspected early onset AMD but now they think its an amelanotoc nevus and don't know why the fluid is there.
It's really scary tbh.
The drs seem very blase and I'm trying very hard not to Google.
I'd be interested to see if you get any replies!
I'm supposed to be scanned again this month but...covid :(

Contact the RNIB. They have a specialist eye team that can discuss this all with you (free service). They are really friendly and helpful.

I have a blood clot and scarring to.my macular from high blood pressure. My symptoms and retinal scan look a bit like AMD, but it's not AMD. My petition referred me straight to the eye hospital. It's been stable for 18 months but I asked to be referred again as it seems worse. The consultant is going to see me 6 monthly.

Do you notice distortion when you close one eye and look at straight lines? Does it impact you? I was told mine might improve, but it seems one side of scaring has remained the same.

Really?
Even if its not suspected amd?

@EmbarrassedUser thank you - the specialist at the hospital seemed to be happy to say it wasn't AMD - would there have been clear features/markers for AMD? I don't know how she was able to say she didn't think it was that.

@Yoikes - I'm sorry you're going through something kinda similar. It really is scary - esp when it's a sight thing, and there's no treatment :/

@roseyroserose great advice - I'll do just that. Thank you.

@Legoandloldolls yes, if I'm watching TV and there's eg a square or stripes, I can see them as being distorted in the two areas I mentioned. If I close my left eye and look at eg my phone or a white wall, there's a grey blob in the bottom right of my vision. With my other eye, it's in the top left. So not in the exact centre of my sight, just off a bit.

Contact the RNIB or the Macular Society :)

I'm not sure how much help or reassurance I can provide but I was diagnosed with macular lesions about four years ago after I had to attend eye casualty when I was bitten on my eyelid by a spider.

I had not ever had any previous problems with my eyesight, I don't wear glasses and hadn't had my eyes tested since school. The lesions were detected by chance when the doctor was examining my eyes.

Following a thorough assessment it also turned out I am partially colour blind, although they aren't sure whether this was caused by the lesions or if I always have been and just didn't know.

The doctor said that it is very likely that the lesions have been there since I was born as my eyesight always has been and still is good.

I have to have my eyes checked annually and so far there has been no deterioration. I make sure I eat plenty of green vegetables and I take a lutein supplement.

At the time I was really frightened at the thought I might possible lose my sight quite young, I'm not yet 40. But as time has passed and I haven't seen any decline in my vision it worries me much less. I think they are, as a PP has said, like freckles at the back of my eye, that have always been there and hopefully nothing more sinister.

@HoundOfTheBasketballs thanks so much - did you find the same as me, that you overanalysed things re your vision, or that you are aware of things in your vision purely because you now know that they exist?

I think I was initially @SpanishFly but I'm a lot more relaxed now that time has passed.

It has definitely made me more conscious of maintaining good eye health more than anything else. So I make sure I take regular breaks from computer screens, I don't read in poor light and I drink plenty of water and get plenty of sleep, as well as the green veg and supplements I mentioned previously.

I don't suffer with anxiety myself but I was very worried initially so I really do sympathise. People equate sight loss with loss of independence and I would hate that. Other than trying to maintain a healthy lifestyle and not overthink it, I don't think there's much else we can do!

@HoundOfTheBasketballs thank you. So so much.

I have an appointment at the optician today. If I'm not happy or reassured with what they say, I'll ask to be referred again. 😔
I'm still not sure if they have good enough equipment to tell me categorically if things are worse

How did you get on at the opticians @SpanishFly ?

Hi there. It was a mixed bag, I think. There was no "significant change " to my retinas, and she saw no reason that would make her feel I needed to be referred back to the hospital. So that was good. Although I wish I had clarified the "significant" part of the comment, as it's the only part I can now think about 😕 I had assumed that they wouldn't change at all, given that the retinologist at the hospital had previous said she had no reason to believe it was AMD. So I'm a bit confused now, to be honest.
I have to go back next week to have my pupils dilated so she can get a better look, so I'll ask for clarification then. I dont really want to know the answer, though - it's just all too scary 😔

I'm know this is a zombie thread but was wondering if there was an update @SpanishFly as I have this issue now and wondering after 4 years if your eye/s are the same?

My DH has it, a few years now. It started off dry & he just had a chart to keep an eye on it. After further tests they later found it had progressed to the wet type so needed treatment. That involved going for injections into his eye once a month for a few months till it had settled sufficiently. Since then he goes for regular checks at a mobile unit that comes to a local town from the hospital. It settled back to dry for a couple of years but then turned wet again so then he needed to start the injections till it settled back to dry. It’s currently dry so just goes for a check to the unit every few months.

Hi there 😊
My own situation is that, four years later, it doesn't seem to be any different-touch wood.
I had a further consultation a year or so later, and they confirmed from the OCT scan that there was no issue within the layers of the retina/macula, and so was not AMD. So it does seem that the distortions have probably always been there but I just hadn't noticed them.

In most situations I'm not aware of the visual issues, but see some things as slightly squiggly. I still check the Amsler grid every month or so, but make very sure not to do it if I'm tired or stressed, or headachy, as it can seem worse in those situations.

I've finally started to relax and trust what the specialist has said. My huge anxiety over it all stems entirely from the initial panic from the optician - it just shows what difference a terrible bedside manner makes on the entire way they break news.

Thats my situation anyway.
Do you have any sort of diagnosis? X

That's interesting to hear - has his vision deteriorated at all?
What does he do to treat/stabilise the dry type? I believe there's not much that can be done about it, but would be interested to know what the current recommendations are.
I hope he's doing ok. I've been in some dreadfully low places at times. This particular issue has been very scary to me. X

Hi thanks for replying. So glad to hear yours hasn't progressed, that gives me hope. But I didn't know you could even have distortion on an Amsler without it meaning something.

Unfortunately I was given a more detailed diagnosis this week and it's startgardts disease which is like juvenile macular degeneration.

I'm freaking out about if I won't be able to work, will I have to give up driving. I work 20 miles away and don't know what I will do if I can't get there. I have worked there for 15 years and this changes everything. I'm terrified and hate the uncertainty of it all.

I can imagine this being very scary for you.
Do you take Macushield Gold? If not, have a google.
If you don't feel supported or you have questions, please insist on another specialist appointment to thoroughly talk things through with them.
When you feel ready, you could talk to your manager to explain the situation, and start to talk things through. For me, being prepared to some extent took away a lot of the panic of the unpredictability of it.
Ask if there are any trials you could be part of.
I know that low carb diets can help a lot - and metformin is often included in trials, too.

Sorry name change but it's still me,the retina specialist has added me to a list for clinical trials as I said I'm happy to try anything.

And I take a macular supplement, not macusheild a different one but it has lutein and the other thing it needs. Very expensive (£50 from Amazon) but that's fine if it helps.

I now need to go and invest in some decent sunglasses and get several pairs I think.

Do you still dont have a diagnosis yourself? Do you go yearly for check ups?

I have an annual check and still have to look at the amsler grid every couple of weeks, but no diagnosis other than it seems to be surface issues, and not in the deep layers/tissue, touch wood.

I hope you get onto a trial soon - for your sake and for the potential to help others. It's such a scary thing, and there must be a breakthrough on the horizon.
As you say, take your supplements and do anything at all which even has the slightest chance of helping. If you don't mind, pls let me know the supplement you're taking, I'd like to have a look 💕

These are the ones I bought. No idea if they do anything but I don't think they can hurt.