Macular degeneration

[PerkyOchrePeer]

I've had mavular degeneration for a few years and it's the dry kind. I usually have my eyes scared so they can see the back of the eye and see how it's progressing. At my usual routine eye test the usual optometrist was not available so I saw someone else. The person I saw said do you want your eyes scanned? I was shocked because I thought it was routine. I said yes and said if we dont scan my eyes how can we see if the disease has worsened or how much macular has developed and she said I won't do it if you say no. I dont like this attitude. I dont want to see this optometrist again. I was told she has been at the practice for 30 years. That doesn't mean she's good. No other optometrist has given me the option of having the scan.its like going to the dentist and being given the option of an xray. A mouth xray can pick up things that the naked eye cannot and so is essential.

Just looked online Google and it said pupil dilation is highly recommended if you have macular degeneration in order to see what's going on.

I only went to this optometrist because I was overdue my check up and the person I normally see was booked up until january

I had a diabetes eye scan myself. Its torture, but the eye is the most important part of the body after the brain.

Why is it torchure?I had this done elsewhere and it was fine

Misread your message i dont have diabeties

Are you not under the care of an eye specialist?

I go to the optician every year

Do you think an eye scan should be optional? I've never been given the option before

Its all about consent. No medical professional will do any tests or procedures without the patients consent. She asked if you wanted the test, you consented and said yes. If you had said no and she continued to do the test that could (not would) be classed as assault.

Is it the OTC scan? You have to pay extra for that at my opticians (it’s either £5 or £10) so you would always be asked in advance.

I think my optician still charges for those scans, which is why they are optional. From what you have said, I can’t see anything wrong with what your optician said bearing in mind you don’t usually see this one. If this is your only option and your usual optician is booked up until January then you’re free to go to another one. Optician scans will give you a sense of the condition of your macular and retina, but they don’t require eye dilation. But that she would need a referral to your local eye hospital where they do much more in-depth scanning.

I’m another who thinks that they were just asking you for consent, nothing really to worry about at all.

If he more concerned that you’ve never been referred to the Eye Clinic at the Hospital.

You could talk about your treatment options wirh the Macular Society and there is also an excellent FB group called Macular Matters where you’ll find support and information

You say it was her attitude that put you off, not actually the scan.

I experienced the same with a very haughty optometrist. Where are they all coming from with their poor interpersonal skills?

Another time I'll be driving 20 miles to the next town for my test.

How are they doing yours, because I have the diabetes related scans every 3 months as I have the beginning of diabetic retinopathy and macular degeneration. They put some drops in my eyes which sting a little and make things blurry then I put my chin on the rest and stare at a green light for a few seconds before moving to the other eye. No torture, pain, lengthy waits or anything even slightly disturbing is involved in the process.

I was informed in advance. Cive had scans before and know i have to pay

I can't see anything wrong with being asked - it's about you giving consent rather than having that choice taken away. I wonder why you're not under the care of an ophthalmologist though?

With MD if it is dry and stable then opticians do care. If there are any changes (the patient will be given tests to do at home such as looking at a card with lines on) then they opticians will do an urgent referral to the hospital (usually same or next day here). If the eyes have turned to wet MD then you will be under a consultants care and likely injections in the eyes to stop deterioration. Once the wet MD has turned dry again and stable then they will be discharged back to the opticians.

Ah that's much clearer, thanks @ChipDaleRescueRangers MIL had MD and she had regular appointments at the ophthalmologist and latterly had injections so she must have had wet MD.

Ah thanks @ChipDaleRescueRangers. I don’t have MD myself but I’m on the Macular Matters FB group that I liked to for a different reason. Usually people seem to join the group when they’ve been referred to the Hospital so that makes sense now

@PerkyOchrePeerhave you been given an Amsler Grid to use at home?

No but you can use an online one. I am beginning to think the optometrist is failing me because a lot of things that should be compulsory are not happening. When I was first diagnosed with AMD 14 years ago, I was sent to Moorfields for a second opinion and they mentioned the grid but no optometrist has mentioned it and no optometrist has said I need to be under the care of an eye hospital I guess that's because I dont need to be.

I have a friend with retinitis pigments and she gies regularly to Moorefields. She is known as partially sighted whereas I am not. She has tunnel vision and attends the low vision clinic.

I believe retinitis pigments is more serious than macular degeneration but it depends if you have wet or dry AMD

Dry AMD does not require referral unless it’s in the very late stages, there is no treatment (unlike wet AMD which is an urgent referral).

It sounds as though the optometrist was doing the job correctly. If the scans are optional (which they often are, most practices will not make it compulsory, but some do), then she must ask if you’d like it (as well as getting consent). Just because you have AMD doesn’t mean that the scan MUST be done (although it’s obviously recommended).

if you’ve not been told, lutein & zeaxanthin supplements such as Maccushield are recommended.

I used to take a form of liten and can't remember what they were. I got them on prescription but then they were taken off and you had to buy them. They were very expensive and I didn't feel they did much good so stopoed

@PerkyOchrePeerdid you watch Chris McCausland: seeing into the future? I think it’s on the iPlayer.

What is this about

I agree everyone with macular degeneration should have a OCT scan, but as this involves a cost outside of hospitals the optometrist has to ask you .

The OCT scan is a major advance in macular degeneration monitoring. You should be self monitoring with an Amsler Grid one eye covered once a week (or you can just check the straight line of a picture frame as an alternative).
The problem as you have said is dry macular degeneration can turn wet.
So dry is like a worn rug with fraying and gaps in the pattern, but wet is having a burst pipe below and as the rug is so worn it comes through and causes sudden damage. If this happens you would normally get a sudden change in vision or distortion (hence checking straight lines to self monitor) , but this can be missed if you are not checking one eye then the other or if the leak is small initially.

The OCT scan is pretty definitive if the macula degeneration is wet or dry like an X ray for tooth decay. If you wait for the decay to show on the surface of the tooth by looking at it the damage is more as it has already progressed. With the OCT scan you don’t need pupil dilation as you are looking below the rug in the centre of the room not into the corners of the room by opening the door wide (dilating the pupil).
You only need to have OCT scans at hospital if there is a concern about wet changes as only wet can be treated and dry just needs regular optician checks with self monitoring and opticians can’t refer to a hospital for dry macula degeneration as they don’t have capacity to see everyone there. You may have been referred initially if you were younger than the average age to develop macula degeneration as sometimes other macula dystrophies or damage from other causes apart from ageing can mimic it.
Retinitis Pigmentosa is monitored by Moorfields as a more unusual condition with potentially severe impact causing tunnel vision as you said, but patients if stable still get discharged to optometrist only checks.

As long as you understand about self monitoring between annual appointments and reporting any change and pay for annual OCT scans then you are being correctly assessed.

Just did the grid test. Theright eye was a bit distorted and the left eye was pretty much straight. Even before I had macular degeneration, the left eye has always been the better eye for seeing. I also have a stigmatism and my eyes such as they are come together and focus properly because the vision out of the right eye doesn't seem bad when looking through both eyes because all my vision shifts to the left eye which is the clearer one so it feels to me like I am only looking through the left eye