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proliferative diabetic retinopathy - need help please :(

Discussion in 'Type 2 Diabetes' started by PDR T2, Oct 4, 2020.

  1. PDR T2

    PDR T2 · Member

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    I am beaten. Sad and have no words to explain my feelings. This June I was diagnosed with severe PDR. High risk proliferative diabetic retinopathy. It all happened after I tightened my a1c control in a year. Went from 10 to 4.8 mmol. I felt great. Everything was going well. Until one day in June I noticed an empty spot in middle of my right eye. It was very weird. Long storey short. Here I am now. 2 months in. 2 laser sessions in each eye; 2 Avastin shot in each and honestly I don’t see an improvement. At least I don’t feel it. I have a ‘dangly floater - string ‘ from from top of my eyes to bottom. Doctor is aware of it as well.

    I am tired of the whole thing. I test my eye every second and can’t keep doing that :(. So sad how you get control of your sickness then your told things got worse. It’s like if you quit smoking and then a year later you get Lung cancer. :(

    Any words from the world here?
    Has any one experienced this ?
    Does it get worst when treatment starts and then better after ?
    Will I go blind now and it’s a done deal? Just looking for anything here My vision is dark /blurry when I wake up but gets better through the day. Not sure if anyone has his through this as well?
    Will the empty spot in vision go away ?

    Thank you all
     
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  2. Goonergal

    Goonergal Type 2 · Moderator
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    Sorry to read this @PDR T2

    I can’t offer any words of wisdom, but wanted to welcome you to the forum. @Dark Horse may be of more practical help.
     
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  3. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    The empty spot you describe sounds like macular oedema, swelling of the central part of the retina due to fluid buildup. Do the blank areas look like frosted glass?

    Same happened to me after laser treatment and I had several courses of anti-VEGF. Even now, three years later, I have flare ups from time to time, despite having perfect blood glucose 24/7. It can apparently take up to four years before everything completely settles.
     
  4. MrsA2

    MrsA2 Type 2 · Well-Known Member

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    Hi @PDR T2
    Although I'm recently diagnosed T2 I have had prior eye problems and surgery - not diabetes related. So I can empathise but am not quite the same.
    I can however say anything to do with eyes is incredibly slow. I am still on 2 sets if drops 5 years after surgery. If it was after a broken leg for example medication might only be needed for weeks or months.
    Like you, I was constantly checking and it was only with time that I gradually realised the improvements. I've had laser 3 times and can't remember how long it took to clear but can remember it wasn't instant. My blind spot is lower left and at first I was constantly checking it. Now I have to concentrate to find it !
    I also found when I was diagnosed T2 and went low carb that my eyes went funny and blurry again for a few weeks. It was almost like I could see the sugar washing away. Again that did clear
    You have had 2 things in quick succession. I know nothing about PDR but I do know how worrying eyes can be and that constant squinting to see if its improved. I also now think if I get blurry eyes its linked to me eating sugar, but it does pass.
    Try not to stress or worry but do contact your eye doctor with any questions or concerns. Mine is incredibly patient and positive, they know how important sight is to us.
    I wish I could help more.
     
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  5. PDR T2

    PDR T2 · Member

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    @MrsA2 @Jim Lahey

    thank you guys for the responses and appreciate your time. initially when I was diagnosed with PDR I had very minimal Macular Edema. Not sure if minimal case causes blind spots

    - The spot iam talking about is basically empty part of vision. Maybe looking through frosty glass.

    - does laser increase macular Edema stuff ?

    - does having blood on retina cause blind spots?

    I was also told that I have a scar tissue. Not sure what the symptoms of it would be ... anything else beside potential retina detachment.
    Thank you guys so much.
     
  6. MrsA2

    MrsA2 Type 2 · Well-Known Member

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    My blind spot was caused by surgery. A bit of soemthing got stuck and scarred as he tried to pull it off, so not similar, sorry.
    But it appears as "greyed out" triangle, a bit like a cake with a slice missing. Over time my brain has adjusted so well to it I really don't see it now unless I really seek it out. My brain just fills in the missing bit. At first it was very different and it felt that tiny slice was all I could see. It takes the brain time to learn but learn it does.
    I know one of my drops is for oedema, 5 years later
    Do you have any medication?
    I don't know the answers to your other questions
     
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  7. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    Take a look at this Amsler grid and follow the instructions. If you see geometric distortion and/or broken lines then in all likelihood you are seeing swelling in the retina. Mine flared up directly after laser treatment, so I was put straight onto anti-VEGF injections and din't have laser again after that.

    https://amslergrid.org/AmslerGrid.pdf
     
  8. PDR T2

    PDR T2 · Member

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    Thank you @Jim Lahey
    Attached is almost what I see. (Highlighted the empty space of vision with white line. - bottom right from centre dot).

    Also is it normal to have darker / blurry vision in the morning that clears up as the day goes ?
     

    Attached Files:

  9. PDR T2

    PDR T2 · Member

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    Thank you. Only Avastin and laser is what I am doing at the moment. Just crazy to think about going blind. my blind sport starts from centre vision so reading with this eye is really hard. Me testing it every other second doesn’t help neither
     
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  10. PDR T2

    PDR T2 · Member

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    anyone else out there with such issues that can add more and shed some lights ... ?
    love this forum / site and how helpful people are.

    thank you all :)
     
  11. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    Yes that was my experience. Not darkened but I certainly found that fine focus was better in the late afternoon. Blood glucose concentration did not correlate.
     
  12. Dark Horse

    Dark Horse · Well-Known Member

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    It's possible that your blind spot is due to a vitreous/pre-retinal haemorrhage resulting from your PDR. If so, it should improve as the haemorrhage resolves. If not, there is a procedure called a vitrectomy that can remove it. However, there are other causes of blind spots - you need to ask your ophthalmologist what is causing it in your case.

    If your PDR is still bleeding into the vitreous, it could cause darker vision which improves during the day as the blood sinks due to gravity. It may not seem like it to you but 2 months is not very long in terms of treatment for PDR. The best thing you can do is to continue to attend all the eye appointments you are given and to continue maintaining good glucose control as in the long term it reduces your risk of sight loss.

    I believe @Grant_Vicat has personal experience of laser for PDR and may be able to give a useful perspective.
     
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  13. mr_cat

    mr_cat · Well-Known Member

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    Sorry to read of your eyes issues, to everyone.
    I too have these problems, all the swelling centred around the macular disc in both eyes as well as general bleeds dotted about the retina. currently my left eye is suffering the worst and being treated by eylea injections. [must have had well over 30 now in both eyes over the last 3 years] the injections certainly help, but its a slow process and the re-occurrence of swelling very frustrating.
    As mentioned by various people my own issues kicked after my bloods improved to normal levels.
    That amsler chart is always interesting, the centre dot vanishes when looked at with my left eye plus lines crush up by 30-40 % in various places, as well as spots of diffused missing areas all over the place. right eye is better in the centre but has a missing bit 1.5 squares below the dot. plus all the waviness else where.
    The whole lot combines to create distortion in far off faces etc, tv viewing etc.
    Being an artist having super precise vision is something of a necessity so far i have been able to work around it but it is a concern.
    All i can add is best wishes and fingers crossed for everyone who is dealing with this unpleasant side effect.
     
  14. PDR T2

    PDR T2 · Member

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    Thank you for your reply and hope you get better soon.
    Does anyone know if you have spots of blood on Retina .. Does this create temp blind spots .. or are the Blind spots there for ever? -
    also .. are 2 ANTI VEGF shots enough to start noticing some difference here or need to wait for more?
     
    #14 PDR T2, Oct 5, 2020 at 4:32 PM
    Last edited: Oct 5, 2020
  15. mr_cat

    mr_cat · Well-Known Member

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    had haemorrhaging here and there and various swelling. As for whether damage is permanent its often hard to tell due to the way things can change, But i dod think some of the damage is permanent , Anti VEGF doe help undo some the the damage but it really dpends on how early and whether the swollen areas have done serious damage to the receptor cells. I think you will find like most other medica things that peoples personal experiences will be different. I tend to notice some affect of the injections pretty quickly , my lastest round is the first of 3 in the left eye. its been around 9 days since the first and i think things have changed a bit, its seems a bit sharper in the very centre but the overall distortion is still very high so reading is very tricky with it.
    The scan showed a lot of swelling so there is plenty of work still to go. there still seems to be images forming in the distorted areas but also shadowing suggesting damage.
    How did your scans look?
     
  16. PDR T2

    PDR T2 · Member

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    thank you. My doctor only done some scans are the very first vision and only continued with treatments after. So far the plan is:

    4x PRP laser in each eye(2x completed in each)
    2 years or + worth of Avastin injections (2x completed in each) - used to help with PDR

    Apparently I had minimal DME in each eye but advanced PDR... makes me very scared and sad. He did also say i had some scar tissue so not sure if these get better or no as time goes :(... I hope they didnt create too much damage.
     
  17. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    I found the worst part was that each eye drew a different image due to different swelling in each retina. So I ended up with double vision and distortion at the same time, as well as whole sections of the grid appearing to be missing or frosted over. The same line in the grid would wander off in different directions. Sweeping up with one eye and down with the other. The whole thing was pin-cushioned and generally very uncomfortable to look at, especially with both eyes open.

    Although I could still read text just about ok with each eye, the interaction between the two was nasty and quite sickening at times. Loads of headaches. This interaction is also difficult to describe to an ophthalmologist and cannot be measured or tested. Each eye is assessed individually but this is of little help in evaluating how you actually see the world around you.

    @PDR T2 best of luck moving forward. It can be a soul destroying process of recovery. Inconsistent. Good days and bad days. Flare ups for no apparent reason. I'm still recovering even now. Only advice is as per @Dark Horse. Keep calm and carry on.
     
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  18. jan.steamqueen67

    jan.steamqueen67 Type 2 · Active Member

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    just wondering those who have the eye problems, How long has it been since diagnosis you have had eye problems i was diagnosed in 2011 on diagnosis by blood sugar was 80 but for the last few years i have been 50 53 56 but last year i was 80 and latest test was 90 i am so worried i have not changed my eating habits, lost three stone and doctor said ny latest results could be due to stress and anxiety as i work in ambulance control and have been working all the way through i have tablets for blood pressure and my diabetes and also i have had a risk assesment they deemed me moderate risk but ive been so worried about covid apparently if i had not lost the weigh i have i would have probably been medically suspended but i am now only in the moderate risk there has been confirmed cases in my workplace we have screens up but i am just so scared also bringing anything home to my older partner whi is type 1 got to go back for another blood test end of october but my stress levels have got worse so dont know how ill go on sick of worrying and i know people say dont worry but cant help it, my last diabetic eye test result was a few weeks ago i have background retinopathy
     
  19. mr_cat

    mr_cat · Well-Known Member

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    Glad to hear the DME is minimal. I guess the laser treatment is to seal leaky blood vessels.
    Its hard not to be stressed by all this I know, try to take things moment by by moment and appreciate that you are now being treated for it. this is positive. fear and stress do not help, though i really sympathise as doe everyone else who goes through this.
     
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  20. mr_cat

    mr_cat · Well-Known Member

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    Sounds like you have been going through it! I certainly concur about the combined effect on the stereo vision. I was the case that the difference combined to cancel out but now the left eye distortion gets in the way. not to such a disorienting state yours has, but still fingers crossed..
     
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