proliferative retinopathy I'M SO SCARED

When I first went to the eye clinic - in fact until I had had 2 lots of laser I was in the same situation regarding seeing a different dr all the ime etc. That was a very busy dept too. Still is. I now see the consultant in the laser clinic and never see the original people/
All hese things take time to sort out but I wouldn't despair yet. A few more visits and you may find you see the same doctor again .
You need to get someone on your side.
If there has been alk of a vitrectomy , in your place, I would ask abiut injections o dry up the bleed first of all.
They preer to try laser on its own first as it is cheaper but that is not always the most effective treament.

I doubt if , these days they would go straight o a vitrectomy. That would be more expensive than an injection.
You do have to look after yourself. Most eye clnics are full of overworked doctors dealing with a vast variey of patients.
You might want to ask abou injections, {not as horrific as hey sound} Not the very expensive lucentis or the fairly expemsive avastin but just a steroid injection - fairly cheap and generally effective in stopping the bleed while they laser.

As you are a brittle diabetic and hoping to get a pump I think you have grounds for asking to see a consultant.
Maybe your GP could write to them on your behalf given all the circumstances?
No everyone you see at the hospitl will necessarily know a grea deal about diabees or the newer treatments.
You will have to try to be brave and ensure hat they understand your paricular problems.
Sometimes they are just following the guidelines and unless you ask and let them know that you are aware of other options and have exra problems you will just be one of the crowd.
Its wort making an effort and you will feel better in that you are taking some control.
I know its hard I have been there and nothing happens overnight.
Do you see nurses before the doctor ? For vision testing etc? They can be very helpful and could help to pass on your concerns.
I know it all seems frghening and overwhelming now but it will get better .Don't despair. They are so used to i all in he hospital they have no idea of the error they can inspire by menioning these procedures whch the patient doesnt' understand but which sounds horrific. Most of these eye procedures sound far worse than they are.

If you ry to be calm and confident and let hem know you wish to be involved in decisions about your treament they will probably respond more to your concerns.

When you get past the "rugby scrum" of the general clinic things should improve. Believe me.

leb said:

Thanks again unbeliever for takung the time to respond.
I do hooe things improve, i have jyst haf the phonecall about my next laser whuch is first tjing tuesday morning. Im guessing its too late to ask about injections fir this tine but will mention it when iget there anyway.
Thanjs again

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Your very welcome leb. Hope all goes well. If the laser is successful you won't need anything else. If not I would maybe just ask
if an injection might help.

Let us know how it goes but remeber it can take a while o make any difference. I have my fingers crossed for you!

leb said:

Hi all
Judt got back from eye unit. Been told my new vwssels are growi g very rapidly. They are going to do more laser within the week but have said i may need an operation to remive blood, scar tissue and the jelly in the back of the eye. I am praying laser will work but my vision is getting worse by the day:-(
TryIng to be positive but its soooo hard
Hope others are having better news x

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Aaawww leb, I really wish you all the best for the laser treatment and fingers crossed you won't need the operation. I know things must be turning over and over in your head and it's hard to be optimistic about what you have been told, because as we all know our eyes are so precious and we wnat to take care of them.

I had a big bleed in my right eye again on Sunday about 5pm. It's hard to see out of and the brightness outside and also lighting in shops etc is very difficult. There's no point going to the hosp[tal because they can't see what the actual damage is until it starts to clear. My eye feels so heavy and my daughter said yesterday she thought I looked like I had been crying because it looked so watery, but I hadn't been crying. I have a new BS machine given to me by the Diabetes nurse and I keep missing the area where I put the blood on, I had to use 4 strips last night, because of the bad eyesight :shock: I am typing this slowly and keep checking the words

Leb, you will be in my thoughts

Hi leb

I did say before, but I had laser 15 years ago for proliferative retinopathy - about 6 or 7 sessions, and it has been stable ever since. No more bleeds, no more new vessels.

My vision is very good, except I am missing some peripheral vision top and bottom so I have to watch where I'm walking sometimes - but otherwise everything central and to the left/right is good. I can see well enough to drive (have to do a visual field test every year for the DVLA).

Hope everything goes well for you next Tuesday :thumbup:

Hi leb

Yes - it was a wake-up call. I hadn't really looked after myself very well before that. There was also a lot of stressful stuff going on in my life at the time, which I am convinced brought it to a head. So if you have any stress, find a way to escape it (probably easier said than done)

I thought I had posted earlier in response to Robin's post but must have missed the alert about someone else posing - I often do!
Just wanted to say Robin that I can totally empathise with all your symptoms. That is exactly what happens to me when my streroid injections wear off. Its alll so familiar. The light outside the lighting in the shops.The diffficulty with test strips , telling people you are not crying.etc.
I don't know whether you read a post by Dillinger the other day in which he said that we only really see most things with the edge of our vision the brain fills in the rest. In my case the brain has so much to fill in it sometimes getds it wrong and I see an object as something else. Very embarrassing when people think you are batty, that is the macular oedema.

I see you are another experienced paient. otally right about not dashng to the hospital I can understand with someone new to the condition but often wonder why others advise it. What can they do? Noone would want to be lasered by guess surely and the only other treatment is the injections which they don't do as emergency treatment.
No leb blindness is not ineviatable by any means. There are many posters here who have overcome their retinopathy.
Even in my case where the treatment only works for short periods I don't see any cause for despair.
Best wishes again Leb and robin.

leb said:

Sorry to hear of your recent bleed robinredbreast.
Have you had many like that or is it a new thing. If so what normslly happens ie do you have laser or injections.
Have you suffered for long??


Is there anyone out there who have had proliferative reginopathy and hadbeen treated succesdfully sith good vision

Thanks

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Hi leb my bleeds started after my 1st laser treatment in November 2011, so not that long. I have had quite a few bleeds, haven't counted how many though. I just have laser treatment and nothing else, but normally the next day, after laser, I have a bleed. It's strange that it only affects my right eye and the left one is not bad at all. If it was both eyes, then I wouldn't be able to see at all, so I guess I'm lucky in that respect. I have laser treatment, but it really really worries me and I loathe the laser, it makes me feel sick in my stomach, but I sit there and think of other things or count, and say to myself, it will be over soon, it will be over soon. I can't even talk about an injection and the eyes :cry: Take care leb and try to have a nice weekend

Unbeliever said:

I thought I had posted earlier in response to Robin's post but must have missed the alert about someone else posing - I often do!
Just wanted to say Robin that I can totally empathise with all your symptoms. That is exactly what happens to me when my streroid injections wear off. Its alll so familiar. The light outside the lighting in the shops.The diffficulty with test strips , telling people you are not crying.etc.
I don't know whether you read a post by Dillinger the other day in which he said that we only really see most things with the edge of our vision the brain fills in the rest. In my case the brain has so much to fill in it sometimes getds it wrong and I see an object as something else. Very embarrassing when people think you are batty, that is the macular oedema.I see you are another experienced paient. otally right about not dashng to the hospital I can understand with someone new to the condition but often wonder why others advise it. What can they do? Noone would want to be lasered by guess surely and the only other treatment is the injections which they don't do as emergency treatment.
No leb blindness is not ineviatable by any means. There are many posters here who have overcome their retinopathy.
Even in my case where the treatment only works for short periods I don't see any cause for despair.
Best wishes again Leb and robin.

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Thanks alot unbeliever, I know what you mean about'appearing batty' but I don't have macular oedema. I have had a pretty bad 5 months( well I thought I was coping, but it turns out it was affecting my diabetes badly) plus sudden servere stomach problems as well. Carrying on and doing the everyday things, I thought, was not causing me any unduly stress and worry, but boy I was wrong on that one. Saying I'm fine and okay, didn't stop what was really going on underneath but I will try and have a look at Dillinger's post. Best wishes to you as well

I am sure sress is at the root of most things. I can keep my levels under control wih die meds and exercise but I can't stop my stress. and i cant est at night as i do during the day. I am sure it was what triggered my diabetes - and who knows if it isn't hat which prevents my retinopahy and maculopahy from responding to treatment.
I feel quite sorry for my consultant . he has done all he can and helped me to get the right advice about my diabetes oo.

he is extremely well qualified experienced and skilful. his reatments work but hen we are back at square one for no obvious reason.
I know these treatments work. I see people at the clinic for he firs ime then discharged a whle later. I have never met anyone who has been having the treament so often for as long as i have so I don't want anyone else to be discouraged by my story.
I am not I just feel uilty about cosing the nhs so much.

ope things improve for you robin and that your eye condition improves along with them.
I don't hink Dillinger's post was connected with eyes aall. hat comment just struck me for obvious reasons.

I think Unbeliever everyone is inspired by your story :clap:

leb said:

Unbliever itd true everyone is inspired by your story.
As for stress considering some raiki as a friend suggested it and i thoughr what have i got to lose. Im open minded now about things.

x

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Oh thanks folks. That is very reassuring. I was just worried lest anyone was acually DIScouraged by my story. I would never have got my diabetes under control if I hadn't suffered the complications . I hope the same proves to be the case for leb.
It is true that every cloud has a silver lining.
It is only natural that people will assume that the proliferative retinopathy diagnosis means imminent blindness.
I am living proof that that is not the case and that recently developed therapies can be effective. I am hoping that
the steroid implant will be suitable for me . It has been approved by NICE so that will soon be available.
Also ther are oral drugs being developed. I just think that if they can keep me going for so long with y advanced retinopathy and maculopathy and my leack of success with some of the reatments then there is hope for everyone.
I can well remeber the fear i felt at first and hope to be able to help others wih my eperience.

Go for it leb! Anything which can help your stress levels is worth a go
!

Hi leb

My understanding is that the new vessels grow because there is not enough oxygen getting to the retina. The new vessels are very fragile and can bleed more easily.

Do you have high blood pressure or have you been doing anything strenuous that might cause BP to rise temporarily? You ought to be on 'light duties' at least until you go to the clinic again.

Also try and keep blood sugars stable and avoid hypos as I believe they can aggravate the condition too.

Robert

Could be the stress of it all?