Maculopathy m1

[Saralou]

hi Guys
Ive had a letter two weeks ago after my retinopathy screen stating that I have m1 Maculopathy in one eye (also r1 in both eyes) and am being referred to opthamology for tests/treatment!? I am worried sick!
I have had type 1 for 24yrs and only ever had r1 background retinopathy in both eyes with a tiny spot they called Maculopathy in pregnancy that reversed within a few months!
It stated on website they normally just recall m1 at 6 months so why are they referring me? I rang screen service and they weren’t much help except to say it was a routine referral that they might monitor or TREAT? I went to see my optician who has an OCT scanner and he couldn’t see any evidence of Maculopathy on the scan and retina looked normal. Also a different optician at the same practise examined my eyes two months ago and didn’t mention seeing any retinopathy just from examining by eye (undilated))
What’s your opinions? Is it worth paying privately to see someone or waiting out the nhs routine appt?

 

[Jaylee]

Hi,

I've had experince with the NHS ophthalmology departments & there have been encouraging results..
When is your apointment Due?

 

[Saralou]

Hi,

I've had experince with the NHS ophthalmology departments & there have been encouraging results..
When is your apointment Due?

I have no idea? The screening service didn’t know? I think on Internet it says u should be seen within 13weeks of screen date?

 

[Grant_Vicat]

hi Guys
Ive had a letter two weeks ago after my retinopathy screen stating that I have m1 Maculopathy in one eye (also r1 in both eyes) and am being referred to opthamology for tests/treatment!? I am worried sick!
I have had type 1 for 24yrs and only ever had r1 background retinopathy in both eyes with a tiny spot they called Maculopathy in pregnancy that reversed within a few months!
It stated on website they normally just recall m1 at 6 months so why are they referring me? I rang screen service and they weren’t much help except to say it was a routine referral that they might monitor or TREAT? I went to see my optician who has an OCT scanner and he couldn’t see any evidence of Maculopathy on the scan and retina looked normal. Also a different optician at the same practise examined my eyes two months ago and didn’t mention seeing any retinopathy just from examining by eye (undilated))
What’s your opinions? Is it worth paying privately to see someone or waiting out the nhs routine appt?

Hi @Saralou If it's any consolation, the Eye Screening Service referred me to my hospital nearly ten years ago, I have not had laser treatment since 1983, having had both eyes done. Like you, I was worried sick and found it hard to focus on anything till the appointment. I was seen by the lead ophthalmologist at Addenbrooke's Hospital (University of Cambridge) who gave me a very thorough examination, even bringing another one in for a second opinion. They both said it was old scarring and that there was no sign of recent developments. Although Eye Screening are not normally in the habit of referring people, they do rely on standard letters, regardless of the patient - so much so that 5 years ago I received one such letter complaining that their records showed I had never attended. A check in my files showed that I had attended every one since they started, even after a pancreas transplant. You can imagine the curtness of my steaming response! It worries me that you could incur considerable costs and anxiety for no reason, but obviously I can't advise you. I hope this is just another example of knee-jerk and sloppy practice. Good luck!

 

[Gloucestergirl]

I was diagnosed with maculopathy about three or even four years ago. I was seen every three months and had different scans as well as the usual ones, 3D etc. It's worst in my left eye than my right, lots of small bleeds and a build up of fluid. I have had several lots of laser treatment, not painful at all but when I went from about 12 flashes to over 200 at a time where all the spots were blasted it can get a bit tiring. There's a chance I may have to start having the injections in my eye but it's a bit like cataract operation so should be OK if I need it. I really wouldn't worry too much about the wait as you may be seen a lot sooner than they say but that doesn't necessarily mean it's bad. One of the things that I noticed was when I looked at horizontal lines like the top of the TV and the top of the screen dipped in the middle. Just try and keep fro worrying too much as they will have found it at an early stage and will just keep a more regular check. I've had Type 2 for 24 years and always have regular eye checks so that they pick up things very early on.

 

[Saralou]

I was diagnosed with maculopathy about three or even four years ago. I was seen every three months and had different scans as well as the usual ones, 3D etc. It's worst in my left eye than my right, lots of small bleeds and a build up of fluid. I have had several lots of laser treatment, not painful at all but when I went from about 12 flashes to over 200 at a time where all the spots were blasted it can get a bit tiring. There's a chance I may have to start having the injections in my eye but it's a bit like cataract operation so should be OK if I need it. I really wouldn't worry too much about the wait as you may be seen a lot sooner than they say but that doesn't necessarily mean it's bad. One of the things that I noticed was when I looked at horizontal lines like the top of the TV and the top of the screen dipped in the middle. Just try and keep fro worrying too much as they will have found it at an early stage and will just keep a more regular check. I've had Type 2 for 24 years and always have regular eye checks so that they pick up things very early on.

I’ve not noticed any change in lines etc I keep checking the Amsler grid! I think I have two or three tiny spots that are blurred but they are like pin heads? I’m just such a worrier! I keep thinking this is all my fault

 

[Dark Horse]

Macular oedema is swelling/fluid in the part of the retina where we see things in detail. Diabetic eye screening is based on photographs which are 2-dimensional and cannot show the 3-D swelling of macular oedema. Instead, the screening programme looks for 'surrogate markers' which are changes in the macula (such as exudates) which are normally (but not always) present when there is diabetic macular oedema. If the level of surrogate markers present at screening is small, a person may be monitored more frequently in the surveillance arm of the eye screening programme. If there is a greater amount of changes/surrogate markers or the visual acuity has dropped, the person may be referred to ophthalmology for an OCT scan which will show whether or not macular oedema is present. The target wait for a routine referral is 13-18 weeks.

It sounds like you have pre-empted the planned OCT test in ophthalmology but I would still attend the hospital appointment just to confirm what the optician has found. If there is no macular oedema, you won't need treatment and you will be returned to the diabetic eye screening programme.

 

[Saralou]

Macular oedema is swelling/fluid in the part of the retina where we see things in detail. Diabetic eye screening is based on photographs which are 2-dimensional and cannot show the 3-D swelling of macular oedema. Instead, the screening programme looks for 'surrogate markers' which are changes in the macula (such as exudates) which are normally (but not always) present when there is diabetic macular oedema. If the level of surrogate markers present at screening is small, a person may be monitored more frequently in the surveillance arm of the eye screening programme. If there is a greater amount of changes/surrogate markers or the visual acuity has dropped, the person may be referred to ophthalmology for an OCT scan which will show whether or not macular oedema is present. The target wait for a routine referral is 13-18 weeks.

It sounds like you have pre-empted the planned OCT test in ophthalmology but I would still attend the hospital appointment just to confirm what the optician has found. If there is no macular oedema, you won't need treatment and you will be returned to the diabetic eye screening programme.

Thanks for the reply! I’ve been wondering whether to pay to see someone private as I’m so worried but been as the Oct scan seems ok I shall just wait for my appointment at the hospital! Would they still put you on more regular screens even if Oct negative but signs on 2d pics of Maculopathy?

 

[Dark Horse]

Thanks for the reply! I’ve been wondering whether to pay to see someone private as I’m so worried but been as the Oct scan seems ok I shall just wait for my appointment at the hospital! Would they still put you on more regular screens even if Oct negative but signs on 2d pics of Maculopathy?

Yes, it's quite likely that you would be monitored more frequently than annually until the 2-D maculopathy clears up.

Good control of blood glucose, blood pressure and blood lipids is the best way to prevent progression of maculopathy.

 

[Saralou]

My blood pressure is low but I’m def working on my blood sugars! I’ve got a libre now and am slowly but surely bringing them down! I’ll ask to get my cholesterol checked when I see diabetic consultant in October! Thanks for the advise! I’m hoping it does clear up as it did when I was pregnant without treatment

 

[ChrissiStar]

Thanks for the reply! I’ve been wondering whether to pay to see someone private as I’m so worried but been as the Oct scan seems ok I shall just wait for my appointment at the hospital! Would they still put you on more regular screens even if Oct negative but signs on 2d pics of Maculopathy?

I went through a vaguely similar situation recently and attended the eye hospital on Monday (if you search you'll probably be able to find my rather panicky thread), optician had found fluid behind my eye which he wasn't overly concerned about as I had just had the most stressful month of my life and he was pretty sure that was what had triggered it, but referred me to Opthamology to be on the safe side, in between that check-up and my appointment on Monday I had my routine screening and they picked up the same thing so I got a letter telling me there had been 'diabetic changes' and I would receive an appointment for Opthamology, luckily I received the letter 3 days before my appointment on Monday. Anyway, long story short - I have no signs of retinopathy and do just have fluid behind my right eye that will likely reabsorb by itself, but I am staying with the 'surveillance branch' for a bit longer, basically until it clears up because normal screening would pick it up and just refer me back again, so it would all be a bit of a kerfuffle, so they just cut out the middle man for a bit.

I know it is easier said than done, but don't panic, I am proof it's not always bad news and if it is something that needs treatment they will have found it early, so the outcome will be fine.

 

[Saralou]

I went through a vaguely similar situation recently and attended the eye hospital on Monday (if you search you'll probably be able to find my rather panicky thread), optician had found fluid behind my eye which he wasn't overly concerned about as I had just had the most stressful month of my life and he was pretty sure that was what had triggered it, but referred me to Opthamology to be on the safe side, in between that check-up and my appointment on Monday I had my routine screening and they picked up the same thing so I got a letter telling me there had been 'diabetic changes' and I would receive an appointment for Opthamology, luckily I received the letter 3 days before my appointment on Monday. Anyway, long story short - I have no signs of retinopathy and do just have fluid behind my right eye that will likely reabsorb by itself, but I am staying with the 'surveillance branch' for a bit longer, basically until it clears up because normal screening would pick it up and just refer me back again, so it would all be a bit of a kerfuffle, so they just cut out the middle man for a bit.

I know it is easier said than done, but don't panic, I am proof it's not always bad news and if it is something that needs treatment they will have found it early, so the outcome will be fine.

 

[Saralou]

Thanks for all your replies I think what is making me most concerned is the fact they have referred me to a hospital ophthalmology when on the website for eye care Wales it says that R1M1 (this is my worse eye) m0 in other eye it says 6 month surveillance when I had it in pregnancy it said m2 definite Maculopathy but they didn’t want to rescreen for 6 months! So I think it must’ve worse now right as they want to see me for assessment and possible treatment!?