proliferative retinopathy I'M SO SCARED

leb said:

Ac theres ni need to apologise. You were completely right whuch us why i went ad it could have been sugns of detatchment.
As fir your field vision test i had one about 5 weeks after my 1st lit if laser before i started bleeding (bear in mind i had nearly 3000 shots un one go) i git the letter back from the dvla 2 weeks agi saying i met medical standard fir druving so i woyldnt worry 2 much about it. Have you nit had laser in both eyes then? Only askung as by law hou have to let thwm kniw if you have laser in both eyes.

Glad it all seems to be healung well. I understand why u would stay private after the wsy u were treated at ur hospital.

Make sure u dint overdo things though x

Click to expand...

Glad you passed your field test Leb - did they give you a three year renewal?

Do you mind me asking how much laser you'd had at that point in each eye?

I've had a lot of laser in my left eye don't know how many burns but the surgeon who did my op said he'd have to go in a bit closer to the centre, which is why it was making me worry. I had four sessions of normal laser and one of endo laser (using a little probe they put into your eye during the op).


The right eye has not been nearly so bad, had a couple of sessions during my pregnancy and then one top up session more recently. I think there is still room for more in that eye though.

I know I shouldn't worry but I'm a fretter by nature and as my job is car-dependent I'd have to look for a new job if I failed it.

I will ask the consultant on Monday what he thinks, but no one can tell me for sure until I do the test at the opticians (the practice one not the one for the dvla). I'd do it tomorrow if I could but no point in having it for about six weeks until the eye is healed.

Even if my eye is ok now after the op there's just two things for me to worry about now, that and the prospect of getting pregnant again next year and that making it come back. We were just starting to try for another back in march when this whole thing kicked off although lucky I hadn't fallen pregnant then or it could have been MUCH worse.

Anyway let's hope we are all ok and no bad consequences for anyone

Ok it's the cornea and not the retina but we are closing in on the big prize :clap:

http://www.dailytelegraph.com.au/lifest ... 6389410129

Hi

I've not told the dvla yet as the surgeon said it takes a few months for the eye to heal so not to tell them yet. I'm going to have the field test done privately so that I know in advance if I need to start looking for another job. My license runs out soon anyway.
It's good that you still passed it with laser to both eyes. Do you know what score you got? Also, do you know how much room you have for more laser, has anyone said that you're running out of room yet? Sounds like you can't have had too much in your first sessions if they've had room for more sessions later as I was told that after the four sessions they did on my left eye that there wouldn't be much room for more.

I'm not sure what happens when they run out of room, presumably at that point they only have the injections or the op left to treat it with.

My actual eye is ok today, but I seem to have developed conjunctivitis in the lid, my eye is very itchy and puss-y. I just spoke to the nurse who contacted the doctor and they dont think it is too serious but will see me tomorrow. I'm hoping it's nothing too serious as I need to get better now for my new job which starts in three weeks, I really can't delay my start date any longer unless I tell them all about this and who wants to start a new job with all this hanging over them.

So happpy for you that you were ressures leb. I am sure your holiday will help.

I think a lot of our concerns are based around the fact that there are few certainties with this disease and its very much a matter of opinion and different people have different opinions. In the end it does all come down to being able to trust the Dr you see.

Regarding the question of whether it is better to have a lot of laser at one tme or more sessions with fewer burns the thinking seems to be changing. Of course a lot depends on the individual as ever. I have macular oedema so the vital thing is to protect the macula but my original treatment with laser was very intens . Both in number of burns and actual intensity of the laser.
I was speaking to a trainee opthalmologist nearing the end of her seven years post -doctoral training and she told me that there
was a new school of thought about laserand it was recognised that too much laser carried risks .
of course laser has been around for quite some ime but i suppose with more and more people being treated certain thngs have become more apparent.
and we may well see changes but these can take awhile to filter through. Although this can seem confusing and contradictory
it must be good that they are constantly revising and updating.

Regarding a possible pregnancy ac i know his is taken very seriously when you have retinopathy.

I often see a young woman at the clinic who has an insulin pump. She became pregnant last year and i was very impressed with he response to this news on her behalf. Everything stopped and an impromptu case conference was called .Another ws arranged for later. She can have been in no dounbt that her situation was aken seriously and that she would have the best of care.

The thing that always strikes me about it all is that so many patients are discharged . The nurses tell me that it is very unusual for anyone to underco continuous treatment for as long as I have . Most patients are sotrted out and hemn maybe have only annual checks . So no need to despair .

I posted at the same time as you AC so have just seen your last post. regarding "running out of room for laser" well no pun intended of course, but that it very much in the eye of the beholder.

Several other Drs and 2 other consultants have reacted with horror to the suggestion that there was anywhere else to laser in my left eye.

My usual consultant just smiled to himself . The last time - a few months ago - when I had laser to both eyes i wondered if this ewas going o be very diffficult. Not a bit of it . He was totally laid back about it although it was very intense laser. The only tense moment was acually a spot very near the macular in the right eye.
in a way , I am glad that comparative amateurs are afraid to even try with that eye and that they know heir limitations but it is a little frightening to feel that my sight depends upon one man.
A vitrectomy would no be possible so I would probably be blind by now if not for him.

Regarding what treatments they have left if laser is no longer possible wll that is the diffficulty. Apparently NICE has approved funding for steroid implants which will last about 6 months but these have their risks too and I think surgeonns still need to be trained in the procedure.
The problem is that injections only work in about a third of cases and when you consider that success can mean as little as one extra letter being read on the visual acuity chart well......There are lots of other things which could have this effec t- blood sugars time of day etc.

If avastin works for you hen this would probably be the treatment with injections every few months Is by no means a given that they will though. When they work they work very well. When they don't ,they do nothing at all. That is why they like you to try a couple by themselves and allow them some weeks to work before making it a long erm treatment. I understand they are only given as on a long erm basis in some cases of wet macular degeneration.

Personally I just hope my sight can be preserved until they come up with something more permanent!

Hi Leb I haven't noticed any field loss, but then my left eye is still quite fuzzy post op. I've been trying to wave my fingers in the edge of my vision on both sides with arms outstretched to see if there's a difference between left and right but let's face it until I have the vision test I am just guessing. The optician I spoke to yesterday seemed very friendly though and hopefully can put my mind at ease when I go see him after it's healed.

I'm seeing the eminent mr c tomorrow though so will ask him. I think he tried to do the last lot of laser (during the op) in a way that would prevent the burns being too close together. I think also a lot depends on other factors such as existing scar tissue and vessels on the retina (hopefully minimal in that eye now as removed during op) and also how big your eyes are and how sensitive they were before you got the disease. So hope mine were good!

poor man I think they woke him up on his sunday morning as I texted the emergency phone at 8.00 about my eye being sore and lots of discharge, the on call nurse phoned him up, he would have seen me today if he thought an infection in the eye but as they think it's only the lid they are waiting til tomorrow. What a nice man!
I was told that if a lot of laser is done at once it can aggravate any waterlogging (maculopathy) also that it is a fine balancing act as they don't want to do too little laser and the disease still gets worse but if they do too much then it can create probs for maculopathy and visiual field.
When I was pregnant last time Unbeliever, the retinopathy only got picked up half way through when the diabetic antenatal doctor looked in my eyes and called his friend the opthalmologist to come and have a look. Looking back i was so naive and never thought it would go proliferative then, still it was only mild compared to my experience this year. Now I know better. I think if I had a long period of stabliity, eg a year, I may consider another pregnancy but be seen regularly throughout and if not seen regularly enough on nhs I'd see mr. C privately for peace of mind. I'm just glad I didn't get pregnant before all this kicked off. Last year I asked at a couple of check ups if I could have another baby and was told yes no problem, luckily it was too soon to want another baby then or I'd have tried and then if the retinopathy had occured when pregnant it could have been much worse plus I wouldn't have been able to have avastin. So this time round if i do go ahead with a pregnancy at least I will know both eyes have been treated and hopefully 'burnt out' as they call it when the laser stabilises the eyes long term.
If it was easy to adopt as it used to be in the 60s when there were lots of babies put up for adoption by unmarried mothers I'd consider that option but it's a lot harder nowaday and whilst it's a very worthy thing to do I'm not sure it would be right for us. Still something to consider particularly if they think it would be very risky to get pregnant again. Its made me realise that for a lot of people who can't get pregnant if the risk of pregnancy is to the mother's health then there's not many options for them unless they adopt (or surrogacy). I'm just glad I've at least got one now.
PS unbeliever where do you get your info from that avastin only works for 28% of patients? I have seen that it is a lot higher eg 70%.

I haven't the faintest idea where i go my figures. As things came up over the past 5 years I have researched them . In the ligh of greater experience I will then search again and often one search leads to another . I have read so many I couldn't possibly remember but i remebere the figures in several studies. These seemed to me to be the most realisic assessments but we all have to use our own judgements.

the figures are a great deal higher for he success rate for wet age related macular oedema . I always mention the possibility of injections usually beginning with steroids and then perjhaos rying avastin because this option is not available in every area.
This sis because avastin is not approved for use on eyes . Lucentis is the drug developed specifically for eye and the maker is claiming that use of avasin a chemotherapy drug can be dangerous..

It is used off licence and at the discretion of clinicians . I remeber when it was first used in the hospital I attend special permission had had to be sought. Therefore it is out of the question for patients to roll up at any hospital and demand them as a right or to think they NHS is letting them down by not offering the injections to all or an immmediate vitrectomy.

Even li=ucentis does not have anything like a 70% success rate which is why NICE has not recommended it. Large scale studies will have o be completed about the safety of avastin for eyes before it comes into general use. wjhich is why i always advise people to enquire if it is appropriate for them and to let the ospital know that they would be prepared to travel to another hospital where it might be available.

I am not trying to put anyone off avastin . If i works then it is wonderful of coyurse. I don't believe anyone thinks of it as a stand alone or one-offf treatment however. It is offered only when appropriate and there is no guarantee that it will work.

I have been suggesting to members with this condirtion for some time that they enquire about injections because the option is not always available. Some experts believe in it - some don't . The jury is still out for its use in PDR.

To an extent we are all guinea pigs. I cannot understand why you assume that this is some tried and tested reatment which is an alternative to laser. Some consultants believe it is a cheap and viable alternative to lucentis. others don't . they all know it doesn;t work for everyone. Some PCTs are happy to allow its use . Others aren't .

There are no absolutes in the treatment of this disease - or in many others.

I went to the hospital today for a check on he laser i had 2 months ago. I had a sort of premonition that there would be a problem of some kind.

After my eye test I was told that the consultant had asked hat my eye pressures be checked before my eyes were dilated. This has never happened before so he must have seen something to concern him last time.
The pressures were very high and checked y both a senior nurse and the consultant. Then I had further laser on my righ eye.

I have been given drops for a fortnight to bring down the pressure in boh eyes and then have to reurn for another check.

wo lots of drops with he most terrifying list of side effects i have ever seen!

We are hoping that the pressure is just a result of the injections and reversible rather than full blown glauconma. In any event I don't know what the implicaions are for future reatment and didn't feel like asking. I always believe in giving he consultant some ime and space to hink abou things.

As I have pointed out above - the risks of injections are all oo real but wihout them I would have been blind already. Not an easy choice.

I am convinced hat the utmost care has beeen taken to give the righ amount of treatment but can't asay I am very happy at present.
Now yo try to bring myself to use these "killer drops"! :lol:

Thanks anicarb, Yes indeed it was MR C but he had made sure of hat beforehand. I don't really see anyone else or if i doit is just because hey are pretending o be busy and speedily pass me back to him.

The scariest thing was that he was trying no tto scare me! he is usually very honestand direct with me because he knows i can take it..
The nurse was elling him he could ot see me in 2 monhs time as his clinic was full and he was insisting he must see me then whatever. He made a point of coming out as I was leaving o reiterate that when I go to the ward to have my pressures checked in 2 weeks I must be sure not to let them make an appointment for me with anyone else , whatever he outcome.
I am very grateful for this but it worries me a little. Well a lot really.

I have decided to leave the scary eyedrops until tomorrow. I have had no less than eigh drops in each eye today already.
The scary ones are not straighforward but have to be prevented from escaping from your eye into he rest of your body.

As I can't seetoo well after the laser I will give myself a break tonight.

I am very concerned about the implications for further treatment even if the pressures do come down.

Fortunately I have so many other problems to cope with I can't sit around worrying about it.!

Oh dear Unbeleiver at least Mr C is making sure you stay in his hands. I know what you mean about him, I am scared to let anyone else treat me now until I know i have stabilised and willl continue to see him privately for a few appointments until I transfer to Chester. Although I can ill afford this I think i have a bit of a phobia now about other doctors seeing me so will stay with him until I feel confident things have settled down.

I hate it when they look in your eyes and you are trying to work out what's going on - I hate the anticipation, particularly if they start making you look in a certain direction a number of times, or start writing notes or whatever - I'm like AARGH JUST TELL ME. Mr. C was doing that yesterday, making me focus on a particular spot and I was sure he was going to say something was wrong but no he was just being very thorough at looking at my eye and possibly where he'd cauterised vessels. It was a long few minutes though.


What do you mean by implications for further treatment, do you mean that if the glaucoma is due to the injections you've had then they won't do any mroe? What a shame if you found something that (until now) worked.

Yes. I always knew that I could not go on having injections followed by laser indefinitely as in my left ee there is very little space left to laser and that steroid injections carry a risk of glaucoma especially steroids.

I suppose I had accepted hat I would lose the sight of my left eye eventually. Unfortunately both seeem to be affected..

I have been having reatment for so long tthat eaminations don't phase me in the least- so long as they are performed by someone i trust.

When they were trying to do a scan today the eyelashes in my left eye kept geting in the way. The nurse commented hat glaucoma drops cause eyelashes o grow longer and hicker- she had no idea i was about to be prescribed them.

Much to my disappointment the leafle accompanying the drops says eactly the opposite. No consolation there!

Perhaps he is making a point of saying it in front of you Unbeliever so you know your are in the best hands ... it may not actually be a negative thing at all :thumbup:

So sorry to hear your news , Unbeleiver.

I didn't know they had so many side effects but if it helps relieves the pressure maybe in a week or two your eye will settle?

Hope you've someone to support and help you with your drops if need be.

Thanks folks for your encouragement but as i said above either way i is not a good prospect for me. in that it will affecthe treatment I have been having fr my PDR and maculopathy and macular oedema. And here is nothing else!

If you are referring to he eyelash thngy SG no the nurse doing the OTC scan knew nohing abou any of it. I was jjust trying to
find a little humour and consolation somewhere in it there,

I am by no means a pessimist as I think you all know but i am a realist. This is serious folks. I know i am in the bes hands and i am duly grateful for that and always have been . I can't deceive myself about the serousness of this. Its a lose-lose situation.

I know the consultant very well by now and that is mutual. He was seriously concerned and i think we were both trying to spare he other's feelings.
I feel that he pressures wil improve , which is fine in itself but if one thing doesn't blind me the oher will.

Glaucoma on its own is a complicaion of diabees too. but just like cataracts can be accelerated by surgery.

That 2month break from he hospital was the longest i have had for years. The nurses often joke that I should move in and just visit home occasionally! Maybe that won't be a joke in future.

Sorry to whine folks but I really can't see any positives or hope in this situation I will just have to be thankful for the added time the reatment o date has allowed me. Thanks for listening.

For you AC, LEB, UNBELIEVER and anyone else who is going through a difficult time

WISHING THAT EACH DAY BRINGS YOUR RENEWED STRENGHTS BRIGHTER TIMES, AND A HEALTHIER,HAPPIER YOU. XXX RRB

Unbeliever, I was the most negative person on the planet a few weeks ago when I had my bleed, so I hope you don't think it presumptious for me to say I know something of how you feel (I say that because you are further along the retinopathy road than I was, but I don't think it matters what stage people have an innate fear of blindness that can make them panic at any stage from first being told they have background to the later stages where treatment is required)

Anyway I was pretty hopeless then, but life suprised me because I was able to find a way out of it, and a lot of that is actually down to you because you took the time to pm me with the name of your consultant in case he could help - and he did.

Anyway what I am saying is, don't despair as we do not know what's around the corner, what treatments may work or not work.

I know none of us is to blame for our complications but I have always felt particularly in your case how unjust life can be as you said you may have been undiagnosed for many years before realising you had diabetes.

I hope and pray that there is something that can now be done...some other treatment or something.

At least in Mr C's hands if that wasn't to be the case you would know that they had tried everything and it wasn't a case of you might have been saved but for the doctors incompetence/not caring.