Proliferative Retinopathy

Home Forums Living with type one Proliferative Retinopathy

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    • #9906

      As you may guess by the scary thread title, this isn’t a terribly happy post as most of my recent ones have been – however this isn’t a desperate cry for sympathy (honest!) :)

      Two years ago I was diagnosed with non-proliferative. I had a bout of simple laser treatment (tens of burns,) that I was told at the time probably wouldn’t be too helpful but might abate the process.

      Four months ago the non-proliferative became proliferative. Though at a very early stage, I was told I didn’t require any more treatment at that point.

      Today I’ve been to see the eye guy, and it seems the retinoapthy in my left eye has increased to the point where I have to have the second bout of laser treatment before I have a major bleed (which would not be good!)

      This time it will be thousands of burns rather than tens. Anyone else been through this care to share their experiences?

    • #11565
      Hairy Gnome

      Sorry @stephen I’ve not had that problem, and hopefully I never will. I do feel for you though, and I wish you all the luck in the world with the treatments.

    • #11566

      Hi Stephen,

      Yup been there… still am really. I had 4 burns in my left eye about 5 years ago and have been kept a close eye on since (pun obviously intended!)

      Earlier this year (about July) I had a ‘routine’ check up. I had the scare of my life (well, apart from my diagnosis, though I never realised the significance of that at the time), when the consultant told me I had progressed strat to the Proliferative stage and needed in excess of 2 thousand burns in each eye as ‘a priority’. He tried to do some there and then but after about 200 in one eye I was in a significant amount of discomfort. (It was a bit like being repeatedly stabbed in the eye with a needle :( ) so he decided to admit me for day surgery and do it under general. He explained that there was a risk that I may lose some of my peripheral vision and that could mean losing my driving license. I was terrified to say the least!

      The surgery bit I found extremely scary and not at all a pleasant experience, (is GA ever fun? I doubt it) but as it was under GA, it was all over pretty quick. I did find my vision was a bit affected (very sensitive to light) for about 2 days afterwards though.

      I have been told that I am likely to require further burns in future and that tight control will certainly help but even this won’t rule it out. I now have a pump and hope this will help me get some of that elusive ‘tight control’.

      On a positive note, I was back at the clinic last week and the consultant is very pleased that my right eye is stable (with vessel growth receding) and while the left eye isn’t quite as good, the changes are minimal and not anything that requires further surgery at this stage. Got to go back again in 3 months.

      Since July I’ve found out that a colleague who is also diabetic, has had far more surgery, including 2 vitrectomy’s, and while that’s never ‘nice’, she is still able to drive and work and do all other ‘normal ‘ seeing things. She firmly believes that having a pump for the last 10 years, which has really improved her control, has really helped prevent her retinopathy deteriorating as quickly as it might have without it.

      Sorry, I’m turning this into an evangelical pump rant! What I mean really is, I was terrified by it all and I completely appreciate where you’re at. I’m certainly not saying ‘Pah! It’s nothing’ – what I would say is, prepare for at least a fair amount of discomfort, but don’t do what I did and stress yourself out, assuming you will be blind tomorrow and your life will be over. Everyone is different and you need to talk to your ‘guy’ about exactly what to expect and any potential impact it will have on you and your life. And if you want to rant, wobble, stress, ask questions etc you’re in the right place.

      Feel free to give me a shout if you like :)

    • #11569

      Don’t worry about the pump rant, I’m starting mine tomorrow (good timing hey?) :) Thanks for all the info too!

    • #11571

      I’ve only had a window Windolened (holes shot in left posterior lens capsule, post cataract surgery) by means of laser…I think they use the same anaesthetic drops as that used for retina-bombardment, though – it is effective when fiddling with the superficial lens, but I can’t think such drops are capable of sending one’s retinas to sleep – I’d much rather be injected or knocked out completely (like @bellebe). Read a horrifying article published by Royal Society describing such a laser procedure, in which patients aren’t allowed to use their jaws to bawl with pain (can cause laser to misdirect), so they’re supposed to emit throaty squeaks or use hand signals to indicate when it becomes unbearable…what terrible scorcher torture! ( @stephen: get your signs&squeaks sorted out beforehand&throat :S)

    • #11572

      Not helping @ckoei lol ;)

    • #11586

      Hope it all goes well! I have background retinopathy so im hoping on my next check up it hasnt gotten any worse. How quickly can it get bad? Is the 6 month check up the nhs do often enough?

    • #11587

      I strongly suspect the 6 monthly is more than adequate – as to how quickly it can go bad, I guess that’s all down to your control.

      Mine has never been (anywhere near) perfect, I’m the first to admit that. I thought my last hba1c of 9 was quite good (for me!)

      Just as I’m writing this I’ve had the call : Surgery booked for 3rd December (could of had next week but I’m not mentally ready yet!)

    • #11588

      I get my eyes checked twice a year – once by the NHS and once by my local optometrist. The latter is far more thorough…

    • #11644


      Hi, I was in a similar position 24 years ago! Went to the local eye hospital expecting to have a few burns and came away with 1000+; BIG SHOCK. Then went back several times to have lots more.

      Things went quiet for about 18 years and over the last 6 I’ve had two big bleeds, one where one eye ended up looking ‘through a major swarm of bees’ and one where a cloud of them gradually spread from the bottom left. Both times I panicked. Both times the eye hospital A&E said “Go away, we can’t give you any treatment until the vitreous humour clears itself.” Both times it did just that in a couple of weeks, both times I had more laser treatment.

      I’ve now had 3.5k+ burns to each eye. No GAs; bit uncomfortable most times; bit painful twice; but Hey, I can still see!

      The point of the tale is that whilst I would certainly never say it’s a pleasant experience, and as Claire said, assume you’ll be blind tomorrow, (well not quite!), just don’t wind yourself up to the point where you’re shaking when you go to the Hospital, it blurs the dots and they can get arsy about you spoiling their patterns!

      Seriously though, my eyesight is not perfect but it’s still OK. I passed the DVLA field of vision test a few weeks ago and don’t have ANY PROBLEMS AT ALL day to day. Talk to the Doc before you let them loose and as long as you’re comfortable: Chill out & go with the flow, at least for the next twenty years!

      Remember that when my ‘blanket’ type treatment started it was experimental. They now have loads of different techniques, use different lasers and know a hell of a lot more about it than when they started on guinea pigs like me.

    • #11645

      Wow, I’m so pleased that your able to see. It’s great to have feed back like this. Well done you.

    • #11646

      Thanks @bazza49 – 6 days to go, trying to chill out about it :)

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