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Maculopathy letter

Discussion in 'Type 1 Diabetes' started by Helen1981, May 6, 2022.

  1. Helen1981

    Helen1981 Type 1 · Active Member

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    Hi all, I am hoping for some advice please, as I am feeling pretty anxious and scared.
    I have been on the surveillance eye screening programme for nearly a year now, due to maculopathy. It went to 6 months and is now back to 3, due to the fact that there are more areas of damage near to the macula, that have now increased in both eyes.
    I rang and spoke to the man at the eye screening service, and he was saying that if it is worse in July, or my vision deteriorates, I will have to be referred to the eye hospital. What happens then?
    I am terrified that I am going to blind. Has anyone else had the same thing happen to them?
    Thank you.
     
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  2. Mrs HJG

    Mrs HJG LADA · Well-Known Member

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    Sorry I don't have any answers, but I'm sure some reassuring voices with be here soon x
     
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  3. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    OK. I was treated for macula oedema. From what I understand the same treatment maybe used for your condition too?
    Mine was ant-VEGF injections.

    If it helps belay any anxiety..
    For me..
    Coupled with reasonable diabetes management, encouraging results & improvement of eyesight.
    No more use of “accessibility” features on my phone. No more “pinch & zoom” on the iPad.
    & I still retain my privilege to drive.

    What may happen if they feel the need, is a course of jabs (for me 1 a month x6 to start.) then a follow up scan?
    They may deem necessary for more if no improvement with follow up checks?

    I’ll tag in @Dark Horse who seems to know this stuff..

    It maybe better to wait for your assessment in July, then find out what treatment they propose?

    I realy empathise with your concern.
    Best wishes.
     
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  4. Dark Horse

    Dark Horse · Well-Known Member

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    It's not unusual for people in the surveillance arm of diabetic eye screening programme to be recalled sooner (in 3 months) due to the appearance of new pathology only for it to have improved by the next time they are seen. They may then return to a longer interval between vists, or they may stay on 3-monthly visits if there is no deterioration in vision.

    If there is a marked increase in pathology and/or a deterioration in vision, you may be referred to the eye department at the hospital. There, they will likely do another test, an OCT scan, which can detect if there is actually any clinically significant macular oedema (CSMO). If macular oedema is found, depending on its severity, you may be a) returned to surveillance in the diabetic eye screening programme, b) monitored at intervals in the eye clinic c) offered treatment.

    Treatment could be injections into the eye or mild laser. This is a patient information leaflet about treatment of diabetic macular oedema. Treatment has a good success rate:- https://elht.nhs.uk/application/files/1216/2256/2541/Diabetic_Macular_Oedema_leaflet.pdf#:~:text=Diabetic Macular Oedema (DMO) is,builds up on the macula.&text=The macula is the central,detail of what we see.&text=DMO is caused by long,sugar levels caused by diabetes.

    At this stage, you only need to worry about keeping good diabetic control (blood glucose, blood pressure and blood lipid levels) and attending all your appointments.

    Thanks to @Jaylee for the tag.
     
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  5. Helen1981

    Helen1981 Type 1 · Active Member

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    Thank you all very much for the information and advice. I will have the OCT scan and go from there. I am just wondering why do people still go blind, if there are these treatments now? Do they not always work?
    Thanks again.
     
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  6. Helen1981

    Helen1981 Type 1 · Active Member

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    I have been for my OCT scan tonight, and I do have some swelling in the macula in my left eye. I have to go back in two months time to see if it has improved or if I need to start treatment. To be honest, I am very frightened. If this is now an ongoing thing forever, surely the chances of going blind are pretty high with this?
     
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  7. Jaylee

    Jaylee Type 1 · Moderator
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    Hi Helen,

    The treatment can have amazing results in conjunction with improved diabetes management.
    When diagnosed, I was in my late 40’s.

    the prospect of what was in store was daunting. The people doing the treatment were professional understanding of anxieties & companionate.
    I even had a nursing assistant take my hand on the first jab? (Not my thing.please don’t do that again…)
    I found keeping perfectly still & focusing on positive visuals helped.

    I can still drive.

    If you do have treatment? Don’t drive in. I took the bus. I would advise dark glasses & a peaked hat.
    It can be pretty dazzling.. The LED sigh signs on my local bus company? Pretty bright even in broad daylight..
    There should be eye drop local anaesthetic with any jabs.. You won’t feel a thing..
     
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  8. Helen1981

    Helen1981 Type 1 · Active Member

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    Thank you for your help and advice.
    I am so glad that this helped you, and that things improved. Have things stabilised for you?
     
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  9. Jaylee

    Jaylee Type 1 · Moderator
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    Me?! I sing in two rock bands. Work also. I was concerned like you at the time. Drummer said “but you can still sing if you’re blind.”

    I am personally more than just stable.. Any decline in vision has Improved.. I’ll probably never be a “fighter pilot.”,
    But I’m “back.”
     
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  10. Helen1981

    Helen1981 Type 1 · Active Member

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    Amazing!!!! So glad to hear it! Good for you! It certainly makes me feel like there is hope now
     
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  11. himtoo

    himtoo Type 1 · Well-Known Member
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    I had a diagnosis of maculopathy back in 2013 and was frightened to death at the prospect....... enter anti Vegf injections in 2014 and since then my eyes have been stable ... but also in 2014 i started self funding libre and this insight has allowed me to better self manage my blood sugars ... please don't give up hope xxi
     
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  12. Helen1981

    Helen1981 Type 1 · Active Member

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    Thank you! I am so pleased to hear that things are stable for you now xx
     
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  13. Helen1981

    Helen1981 Type 1 · Active Member

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    Once you have macula odema, can it ever go?
     
  14. Joy1988

    Joy1988 · Member

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    Hi,
    Hope you are well! I was diagnosed with macula Edema and went on to have eye injections. It was by far the scariest thing I have ever experienced (at the time) however with hindsight it really wasn’t that bad and took my vision back to 20/20. I have been stable since 2017. I am still checked more often but has recently gone to every six months! I hope this helps a little! Try not to panic (or google.) good luck!
     
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  15. Helen1981

    Helen1981 Type 1 · Active Member

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    Thank you for your message, it it much appreciated. I feel very frightened as I have been told that I need to get my control sorted once and for you. I try so hard and have such awful control, and that is what is scary. If I can’t sort this, I fear it will just get worse and I will end up blind.
     
  16. Helen1981

    Helen1981 Type 1 · Active Member

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    I meant once and for all!
     
  17. himtoo

    himtoo Type 1 · Well-Known Member
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    I can only report on my personal experience ....at its worst the odema in my left eye was measing at approx 469 microns thick which was when i started anti VEGF injections...............at my last hospital opthalmology appointment in January 2022 the odema had disappeared and macular thickness in the area was measured at approx 270microns which is considered to be normal.
     
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  18. Helen1981

    Helen1981 Type 1 · Active Member

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    Wow that’s amazing!!
     
  19. markpj31

    markpj31 Type 2 · Well-Known Member

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    I was diagnosed with them in 2019 due to the fact that I suddenly controlled blood glucose at the time according to the ophthalmologist, she also said in the report that 'hopefully it will heal'. So, who knows?

    I Just can't believe that in the year 2022, we are still using 1960's technology to try and treat it.
     
  20. Helen1981

    Helen1981 Type 1 · Active Member

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    Have you had to have any treatment for yours?
     
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