proliferative retinopathy I'M SO SCARED

I dont know very much about bolus, low carb and insulin, you need to be careful to adjust insulin when you are eating low carb, thats all I know, but its of utmost importance to keep bg levels steady, well controlled, no drastic fluctuations, the eyes are the first to suffer if there are sudden highs or lows in bg levels. Grrr dont I know it!!

I was placed on annual screening, all was fine, until the rogue bleed last year. Retinopathy is in remission I am told, there is fibruous tissue left from where vessels have been cauterised but nothing else. On hindsight I did help someone with a house move, so the bleed could have happened as a result of lifting heavy objects, nobody knows. But rogue bleed or not,
I have gone private and asked to have my eyes screened every 3 months, the last bleed has made me nervous.

I didnt always find it so easy eating low carb, cutting out the foods I was used to and enjoyed eating since childhood. I think a lot of it is down to attitude and being flexible, if we think 'cant have this because of diabetes' we become resentful; I have friends and family, non diabetic, who opt for roast swede because roast spuds are boring.....

I dont use food to comfort myself, except for a mug of hot chocolate, all made low carb of course or soup with bread, but otherwise I find other non-food treats to reward myself whenever I feel the need for it.

WhitbyJet said:

I was placed on annual screening, all was fine, until the rogue bleed last year. Retinopathy is in remission I am told, there is fibruous tissue left from where vessels have been cauterised but nothing else. On hindsight I did help someone with a house move, so the bleed could have happened as a result of lifting heavy objects, nobody knows. But rogue bleed or not,
I have gone private and asked to have my eyes screened every 3 months, the last bleed has made me nervous.

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The Opthamologist I see who is the most senior in the department with 30 years experience says that patients can go into a long period of remission from Proliferative Retinopathy but it can come back for no apparent reason, he says that this isn't always the case and he does see patients that have been trouble free for 20 years but we should always be mindful that it can come back so should always attend regular check-ups.

Time and time again he reiterates that keeping bg, bp and cholesterol in check is beneficial to eye health, he also says that eating a diet rich in fruit and vegetables (preferably dark ones) can also aid eye health.

I'm sorry you've had such a scare, however Moorfoields is the est eye hospital, one of the best in the world.
Retinopathy with kidney trouble too can be down to high Blood Glucose AND to high blood pressure.
You need to get BOTH under control.
I know it's my favorite subject, but I'd say, if you haven't tried it, try low carb. It can't hurt you and there's a pretty good chance it will help.
Hana

noblehead said:

WhitbyJet said:

I was placed on annual screening, all was fine, until the rogue bleed last year. Retinopathy is in remission I am told, there is fibruous tissue left from where vessels have been cauterised but nothing else. On hindsight I did help someone with a house move, so the bleed could have happened as a result of lifting heavy objects, nobody knows. But rogue bleed or not,
I have gone private and asked to have my eyes screened every 3 months, the last bleed has made me nervous.

Click to expand...

The Opthamologist I see who is the most senior in the department with 30 years experience says that patients can go into a long period of remission from Proliferative Retinopathy but it can come back for no apparent reason, he says that this isn't always the case and he does see patients that have been trouble free for 20 years but we should always be mindful that it can come back so should always attend regular check-ups.

Time and time again he reiterates that keeping bg, bp and cholesterol in check is beneficial to eye health, he also says that eating a diet rich in fruit and vegetables (preferably dark ones) can also aid eye health.

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Excellent post :clap:

leb said:

Hi all
Just to keep you up to date ive had a bit more laser slthough not much because of the amount of blood still and was yold i need more in my left eye too so back nxt tuesday :-(
Just wish i had some real answers and prognosis but all im told id ' wait and see' i kniw lasrt takes a while to tske affect buy its so frustrating

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Its never ending isn't it ? I hope next Tuesday 's appointment goes well for you. Just want to send you lots of hugs {{{{{{{{{{{{{{{{{{{ }}}}}}}}}}}}}}}}} and I will be thinking of you. Don't despair, with very best wishes to you X RRB

leb said:

Hi all tnought id just up dste u eith my latest from eye clunic yesterday. Had mire lader in bith etes but dic said he diesnt thunk he can do anymore in the right eye as theres alot if traction from scar tissue and laser may nake it worse causing retinal detatchment.
Still cant say if recent laser has been sffectivw whichws disheartening to say the least. I mus sdmit spemt most of yesterfsy ctying as i just want some good news and it always seems quite negative. He mentioned sgain the vitrectomy so when i go back in 4 wks i might know mire. He saud it wss safe to fly as im on holiday in 2 weeks so thats goid alrhough sm very nervous because if the oresdure on the flight but apoarently that wont maje a dufference.
The bleefs gave startef up big time again so im just ferling a bit rubbish about it sll once again.
Hope thered sime improvement in your cases
All the best

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Thanks for letting us know. I just wish you very good health and happiness leb I cant say anymore than that. With good wishes RRB X

Leb I am so sorry to hear things are not improving but getting worse. You poor thing

When I was having bleeds I didn't notice anything like that to do with detailed vision, so I can't say I recognise that symptom

This is a stab in the dark, so I may be wrong, but I've heard that prp laser can make maculopathy worse which is the part affecting your detailed vision, so this may be why you are seeing things blurry.

The other thing I was thinking was that if the retina was becoming detached (don't wanna scare you but it's a possiblity with PDR) this could be affecting that part of your vision. Do straight lines look wavy or anything like that?

Can you go to the emergency clinic and perhaps speak to one of the doctors there about it? Whilst they may not be able to actually do anything before your consultation perhaps they can explain what may be going on. They will also be able to tell if your retina is still attached.

As none of us on here are doctors, the only way to find out for sure is to speak to one.

Best of luck I am thinking of you x

PS just re read your post from a few days ago when you said the doctor thought there was a chance of retinal detachment in rt eye if more laser, you should really go get it checked out just in case

Glad they can see you tomorrow - hope you are ok

I just googled symptoms of retinal detachment off wikipedia and found this

a dense shadow that starts in the peripheral vision and slowly progresses towards the central vision

the impression that a veil or curtain was drawn over the field of vision

straight lines (scale, edge of the wall, road, etc.) that suddenly appear curved (positive Amsler grid test)

central visual loss

The last one made me think of you - really really hoping it is not that though.

The other possibility as you say is macula odema.

If it gets worse will you get down to the a and e department Leb? Would hate you to leave it til tomorrow if things get worse

Keep us updated best of luck x

Not sure about the reabsorption theory Leb, my bleed reabsorbed after about a week an I don't remember blurriness. There were a few stubborn streaks of blood that stayed stuck, but overall I just remember the fuzz thinning out until it was barely noticeable. But maybe everyone's different.

Sorry I can't be more positive, I don't want to scare you but as you said in your previous post retinal detachment is a possibility due to scar tissue, I just hope that it isn't that.

If it is, they are sure to give you the op though.

leb said:

Thanks ac yes just spoke to emergency eye unit. They are going to see me tomorrow at 2 so hope to get the answer.
No lined sre strsight and there doesnt seem to be sny distortion just very very blurry!!!! its the detatchment rhat i am cincerned about. Then i thought maybe ive developed macular odema but again its a stab in the dark. Um hoping uts a sign if reabsorption but i think i teally sm just clutchin at straws.
Well i guess i will know tomorrow one eay or another. Looks like my much neefed holuday may yet again hang in the balance. :-(

Thanjs again for yoir input
Will let you know what they say

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Aaawww leb it never ends for you does it? ((((((((((( hugs))))))))) I will thinking of you tomorrow while I am at work. Good luck and fingers crossed X RRB X

leb said:

Hi all thought id just update u all.
Been to eye unit seen the doc and tjankfully he says my retina is flat
The blurring is the blood miving and reabsorbin so i am happt wirh that
Hope all r ok

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I'm so pleased for you, :thumbup: RRB x

Really pleased it was not your retina. Hope you can go on holiday now and try and relax a little x

Hi, my eye is still a little sore and feels like when you have someting in it, from the stitches, but the doc said it was healing well. I'm seeing him again on Monday.

I tried to get up and do some light stuff around the house yesterday, as the nurse said I could, but my eye got really sore and i worried I was over straining it so I've tried to do less today. It's hard though as my oh is not the best at house work and the place is a tip!

The hardest thing has been that I couldn't lift up my little boy last week, and I missed his cuddles, but I'm ok to lift him now. Also from a practical point of view this means I can move him about and change his nappy and stuff (not that I missed that particular task!)

The vision in my left eye is still really blurry but the doc said this is to be expected and that the drops also make it blurry.

My big worry now is that I will have to do the dreaded visual field test for the dvla, I really don't wanna lose my driving licence!

I spoke to an optician who was very friendly and said he could test it for me once i've healed (about a month) he only does the basic test but it should give me an idea. I'm just hoping my rt eye is ok if the left fails, as its only had 3 sessions of laser.

All in all I feel ok, I am scared to go back on the NHS now so think I may still see the private doc for around six months or so for follow ups just to check it has definitely worked and that the rt eye does not play catch up.

I am so glad for you Leb that your retina has not been affected (as in detachment) and that there is nothing untoward causing the blurriness. Sorry if I sounded negative in my posts yesterday, I guess after being through it myself and having my trust shattered by the doctors when they said it was all getting better and it wasn't, I have become pessimistic about this illness. But I will try not to be too pessimistic when replying to others on this forum.

Hope your bleed continues to clear

AC x