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Maculopathy

Discussion in 'Diabetes Discussions' started by Serenasaurus, Nov 24, 2017.

  1. Serenasaurus

    Serenasaurus Type 1 · Member

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    Hi, I've got a few questions for those of you who have been diagnosed with Maculopathy.
    I have had background Retinopathy for years and just recently had my best HbA1c result of 57.
    Today I got my eye screen results and I have now got Maculopathy. They have arranged an appointment to talk me through whats needed etc but I definitely got a scare when I read the letter.

    Those of you that have had treatment, what is it like? Does it hurt? And those diagnosed, how has your vision been affected?

    Thanks,
    Seren.
     
    • Hug Hug x 3
  2. himtoo

    himtoo Type 1 · Well-Known Member
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    Hi @Serenasaurus
    I have had retinopathy for 27 years ( have had laser in 2002 and 2012 )the maculopathy diagnosis came in 2013 -- I had 3 injections of lucentis which have either stopped it progressing or it has stopped progressing by itself.
    My BG control has been good for the last 20 years .
    recent Hba1c's between 39-46

    my left eye (( the one with the maculopathy ) is not 100% -- I can see fine but a tiny tiny bit of my central vision is affected making reading small print very difficult. -- my right eye is still fine -- so overall I still see really good.

    the injections weren't alot of fun on the scale of woohoo !! --but if they can preserve sight they are worth doing.

    hope this helps
    hugs to you !!!!! [[[[[hugs]]]]]
     
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  3. Jaylee

    Jaylee Type 1 · Moderator
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    Hi, @Serenasaurus ,

    I've had treatment for Macula oedema. Which is a simalar treatment to @himtoo 's

    I had with Lucentis in right eye, then toward the end of the treatment (which was going well. )They found the same issue in the other eye & decided to use eylea.. Which to my experience vision recovery time after the procedure is quicker.

    The actual injection is quick, it's the prepping up with the local anaesthetic drops & cleaning the area that's a faff..
    The sight test results were more than encouraging for me!

    From memory, before the treatment they check BP & BS if your any lower than 4.8mmol or higher than 14mm they won't do the job.. Which is quite a genourous range regarding BS. I was surprised. I aim for between 4.8 & 7.8.

    I would advise taking dark glasses & a peaked hat. Don't drive.. (you should get a comprehensive letter outlining all the basics..)
    The first couple of times I went, (Hospital in Bath.) the nurse sort of held my hand as the whole thing was happening.. Which made me feel more uncomfortable than the actual process. Lol.

    Best wishes.

    J>
     
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  4. Serenasaurus

    Serenasaurus Type 1 · Member

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    Thanks for your replies. I have noticed some odd flashing in my vision and weird dots/floaters that I have been told (and assumed myself) is to do with my migraines. Though, after reading about retina problems and their symptoms I'm thinking that maybe it could be the beginnings of vision loss/disturbance due to diabetes.

    Hopefully I wont need treatment and if i do I hope it's not the injections. I'm already quite squeamish when it comes to needles and operations etc. I cant imagine them putting an injection in my eyeball....I'm thinking I will need something to calm me down beforehand :/
     
  5. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    The whole "unknown" is always a worry... But once you get the first one under your belt.? You'll do brilliant.. :)
     
  6. himtoo

    himtoo Type 1 · Well-Known Member
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    honest answer @Serenasaurus
    the build up is grim ... the actual injection is not fun -- but is not actually that bad

    I just went to bed when I got home after each one and tried ( and did ) to sleep
    it is a gritty feeling in the eye after that was not so fun


    you can do this though -- LOL -- an ol'softie like me did it !!!!!!:)
     
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  7. Jaylee

    Jaylee Type 1 · Moderator
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    Funny enough @himtoo , Once I'd bussed it home.. I got some shut eye too! :)
     
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