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proliferative retinopathy I'M SO SCARED

Thanks everyone.
Still feeling prwtty sire ans swollen and im told it looks pretty nasty but i guess all the bruising and blood ate still coming out. My vision is still non exustant but im guessing thats because the air bubble hasnt yet dispersed.
Only a few more hours of laying face down so that will be a relief when i can sit up agsin.
Thanks again for all your kind words
 

Hello leb, How are you feeling today, any improvement :?: It must be a huge relief for you to be able to sit up again. I am crossing everything for you to have a postitive outcome :thumbup: Take care Best wishes RRB
 
Hi rrb, yes a huge relief that i can be upright again. The eye still feels sore and looks pretty horrid but the pain isnt too bad. The sight still hasnt returned i just have about a 1cm sectuon across the top of my vision that looks like im looking tjrouhh very thick fog!! Im a little concerned but as i can still see the outline of thw air bubble im putting it down to the favt it hasnt yet dispersed. Th doc said it should go within a few days and also said i wouldnt see tjrougj.it so thats whst im hoping is the cade. I have researched and alot of people say their sir bubble took up to a week to go so am prsying im just one that it takes longwr to disperse and once it does hopefully ill get some sort of vision back! :-/
Thanks for the message its nuce to kniw people care x
 
I found it really helped to speak to other sufferers. I know some people object to being called a 'sufferer' but if you have retinopathy to the degree Leb and I did, believe me, you suffer.
It was hard for 'normal' people to really get just how frightening it was to not be able to see properly, the 'picture' we all take for granted was suddenly damaged, the screen was cracked and I think it is natural for the body to go into some sort of panic mode when such an important part is no longer working properly. I know that I was losing my mind at times particulary as I was not getting good treatment from my local hospital in my hour of need, although I know Leb has been more fortunate.
It is lucky that we at least do have treatment today compared to the diabetics of yesteryear, I can only imagine how frightening it must have been for those diabetics of 50 years ago or more to be facing certain blindness and with nothing the doctors can do. Or those in other countries where medical treatment is inaccessible.
I know that my retinopathy experience has had a profound effect on me, I am no longer as carefree as I used to be, I am much more risk-averse and I dont' really feel safe or secure anymore in the way that I used to. Its like a shadow in the corner of my life.I also find myself getting insanely jealous of anyone who is healthy and does not have to worry about this (or the diabetes itslef)
I just hope that for Leb me or anyone else suffering from this horrible, horrible affliction that we all get through it with our sight and our driving licenses intact.
The good news is that many people find that once they have had the treatment their condition is 'burnt out' and this can be a permanent solution if bg's are kept nice and low.
 
Have been away for a few days and alhough I did look at the forum when I returned I have only just seen leb's posts.
Hope it all continues to improve for you and that it has been successful.

A few years ago when I was having an angiogram there were 6 people who were waiing in the clinic wih me who had just had vitrectomies. We had a long wait and all felt like friends when we left but I have never seen even one of hem again anywhere
in he deparment so i assumed all was well wih hem and hey had no need to return. I hope the same proves to be the case for you leb.

Its good that people are speaking of heir experiences here. I realise it might scare some but when they find that others have had hese procedures and hey have proved successful it must help.

Fingers crossed for you leb, keep on with the bulleins.!
 
Ac i think your previous post us so true. I dont think anyone who hasnt been through it can really understand just how frightening it is. I guess thsts the same with all things in life but that doesnt make it any easier to deal with at the time. ub i can underdtand what you say about not wanting to frighten people but i too thi k this forum is invaluable to those who face problems espevially in the beginning. It was this forum that really helped me tjrough, learning about the dreaded eye problens and getting kind words form the likes of yourself , ac and rrb to name but a few
well its a week since my op and things seem ti be going ok. Its still very red and ive developed lots of flashing whuch really concerned me. I phoned the eye ward and they saw me the same day jyst to check it out. Thankfully the doc said he couldnt see any tears ir holes appearing and tjinks the flashing iswhere the air bubbke is shrinking and moving hence pushing on the retina at times. My vision us still foggy and i have a few floaters but apparently thus us quite normal fillowing such surgery.
I know it stIll early days and i wint kniw if its been succesdful fir a goid few weeks but so far so good. I was soo pleased the other day when i went to the eye unit as i could actually see 3 letters on the eye chart ( i kniw that might sound bad to some but considering i couldnt even see the chart begore the op i was made up)
Well i hope you are all feeling well, take care x
 

Hi leb I'm keeping my fingers crossed for youX I haven't been through what some of you have been through, mine is maybe in the very early stages and I have started taking I CAPS tablets for the eyes. I don't know if it will help with the eye problem, I wont know until the new year when I go back and see Mr K. The openess and courage from the people that have poated on this thread is absolutley wonderful and I'm sure a great comfort to others. Please keep us posted on your progress, onwards and upwards leb :thumbup: Take care with good wishes to all RRB
 
Hi all just thought id update u all with my progress. I went back to the eye unit for my 2 week check and was told its still too early to say how succesful the op was. Apparently im still high risk of further retinal detatchment and will be for the next 6 weeks :-( it was a bit of a shock as i wasnt tod it had actually detatched before i thought it was just beig pulled.
I guess now its just another waitin game but at least it wasnt bad news as such.
Hope you are all keeping well. All tge best x
 
Sorry to hear that Leb. Still no news is good news I suppose.

I've had some semi-bad news, I saw another consultant to get a second opinion on the is it safe to get pregnant issue. The good news is that the doctor thinks I can get pregnant without too much risk, but thinks my right eye, which I thought had stabilised, will need more laser. He said this may affect my driving license. So it's back to worrying about the driving license which I was kind of ok with up to now as the field test revealed my right eye had no errors. So I was banking on that getting me through. Now I am back to sqare one it seems. I know I should be happy that the doctor has said I can have another baby but I'm confused, why is he saying this if my right eye is not stable? I thought I was not supposed to get pregnant until both eyes were stable. Its like he's giving me good news and bad news in the same breath and I can't handle it, couldn't sleep last night.

I really really don't want them to mess around with my eyes anymore, and have just had enough of all of this basically.
Although I don't want more laser if the right eye is going to go like the left did, then of course it will be worth it.rather than go though all that again.
The doctor did want me to have a dye test but it costs too much and I've already given them all my money, so I think I'll have to go back on the Nhs for tests. To make it worse it would be done at the NHS hospital anyway so I wouldn't even get the nice 5 star treatment for my money!
I'm going to go back to Mr. C for a second opinion on the right eye needing laser issue. If he thinks I need it I'll ask to get referred to his NHS clinic. I keep thinking that the other doctor wasn't 100% sure, as he wanted me to have the test to check my circulation, so I don't think it is really bad, but he said there are definitely new vessels there which is not good.

Feel so depressed today, every time I think I am coming to terms with the retinopathy and on an even keel I get knocked down again.
 
Chin up ac. I pm'd u already but just wanted to send you a hug (((ac))))
It just feels like a constant battle doesnt it :-(

I had my dsn ring me today as she got results of my current hba1c and was so impressed she had to tell me. Since going on tje pump its come down again to 6.4 . I really wasnt ecpecting such a diffetence just hope the eyes dont react like they did b4.

Heres hoping for a better day 4 u tomorrow ac
Take care x
 
The chin is very much down today! I don't know, I just feel beaten by it, I used all my resources trying to mentally fight it earlier this year and now I just feel very depressed and like I don't care anymore.

I just can't get on with my life when I feel like things like my job and my family are threatened.

I know I will feel better in a few days, and I am going to see Mr. C next week for his opinion, but I am off to bed now for some feeling sorry for myself under the duvet with a bar of chocolate (but will inject for it).

Well done on the Hba1c Leb, I got mine the other day too which was 6.6 (despite all the junk food, I guess the injecting extra worked), let's hope this means our retinopathy troubles will soon be over.

AC x
 
I'm really sorry to hear that AC but if you've had 3 laser sessions on the right eye already and still have no errors with it then surely you have to be positive about another one?
 
Yes SG but where does it end? Every time I think it will leave me alone for a bit it's just there waiting in the corner.
The only good news is that I may be able to get help with the consultation costs if I change medical plan at work, doesn't apply to diagnostics or treatment unfortunately but may mean I can see Mr C for consultations at much reduced cost. Half the time it's getting the consultants thoughts/decisions which is the tricky bit, if the treatment is then accessible on the nhs, such as laser, its just a matter of having it. Finally - a plan that recognises pre existing conditions!
 
Hi all, I have a tear in my retina from the vitrectomy, I think this explains the fuzzy blind patch which is kind of tear shaped (long and thin) where I lose things from view if I shut one eye and wave things around in that area.
I'm really, really annoyed that Mr. C did not mention this - the other consultant saw it straight away and said it was a result of the operation. If it is the fuzzy blind patch - which I am pretty sure it is - that was there straight after the op.

I'm going to see Mr. C tomorrow to see if he can explain this.

the second consultant doesn't think it needs treating, but it's a bit of a blow as it is permanent damage. I don't notice it with both eyes open but it's definitely there when I close my good eye.

I know the vitrectomy is a risky op and tears can happen a lot, but can't understand why I wasn't made aware of it.

Perhaps Mr. C will explain tomorrow, perhaps he will fob me off, but he's in my bad books now.

Seriously thinking about changing to the other consultant I saw now as i don't know if I can trust Mr C if he with held this from me.
 
Well I saw Mr. C today and he was in a right grump because I'd been to see another consultant. Basically threw his toys out of the pram, accusing me of being ungrateful for what he'd done etc and how difficult the op was. Yes but I knew that already, this was never about the tear itself, just the fact that he never told me about the tear.

Anyway his ego obviously can't take any sort of challenge, or the fact that I saw someone else (which was because he was fence sitting on the pregancy issue) so he's not the consultant for me long term. We smoothed things out towards the end (after a lot of me reassuring him that I wasn't ungrateful, I did understand what a difficult job it was etc) but agreed I wouldn't see him for consultations again in future.

To be honest I expected a bit more professionalism from him, if he's going to get all emotional if I get a second opinion or challenge him then he's probably not the consultant for me. Its not asthough these guys don't charge enough for what they do.

Its upsetting enough dealing with retinopathy without having to deal with doctors egos too!

Anyway I can't really afford to see him anymore, so it's back to the NHS with Mr. L if I need private consultations I guess.
 

You paid alot of money for the op AC, your savings, and he, I would imagine, is getting a good wage :roll:

Good luck and keep posting we are all here for you and every one else who is going through awful eye problems. Best wishes RRB
 
Thank you RRB, shame though that he had to be like that though, he could have just explained the situation to me without making a big fuss about it all and saying he was upset etc. I don't really care if he's upset, I don't need to know about it, I'm his client not his therapist! I'm sure I've been far more upset in the last six months from all my medical problems than he has!

Anyway we left things on a better note, so I'm just going to put it behind me now.

How are you and your eyes?

And how is Leb not posted in a while hope she is ok.
 
Hi all
Im doing ok still 'recovering' from the op. Still waiting to get the 8 weeks post op out the way with no further detachment :-/
Its a bit if a worry as i have so muvh glashing 90% of the time which i know is a sign of detachment but i have been back to the hospital twicw now both timex the fladhing eas presen and i wad told it looked the same still. So im keeping everything crissed thsts how it remains. I kniw ive lost a patch of vision but its very much like ac's fuzzy patcj and if thats the only reminder i have then i will be happy. Im back to see the consultant on 10th oct unless snything changes for the worse.
My vision is fluctusting quite a bit and if i have a hypo this really affects it. To the point where i csn see hardly anything. Does snyone else notice this with a hypo or is it just me???
Well hope u are all keeping well
Take care
Leb
 
Hi Leb
I get funny vision if I have a hypo sometimes, just like everything goes a bit fuzzy. Apparantly the retina is the most energy demanding part of the body (hence why it tries to grow new vessels) so this makes sense if youre energy levels are down.

Sorry to hear about your flashing didnt realise it was so much.

How would you describe your fuzzy patch, is it literally like a little hole in your peripheral vision that you can make things disappear into? Where is yours and how big? Mine is on the left of my nose, so quite far over to one side but about 1/3 the way up the field, and not huge but noticeable, wish it was lower really but it doesn't really bother me with both eyes open. I guess I can learn to live with it, it's just the fear of relying on my left eye if my right eye was ever to go.

Anyway hope your retina stays ok for the 10th

AC
 
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