It's just unfortunately everyones story seems to be quite bad ... I'm just wondering if anyone had no complications and it stopped the progression of the retinopathy?
Good experience of laser with prolific retinopathy?
- Thread starter SouthernGeneral6512
- Start Date
I think it is quite natural to hear more from those who have ongoing problems isn't it? Everyone is looking for reassurance.
I know it won't seem so to you but after my first two sessions of laser when there was too much fluid for the laser to work , I feel that the laser treatment I have had has been extremely successful
of course it is not a stand-alone process and much depends on your diabetes conrol bp etc but I am amazed i can still see with bi-lateral retinopathy and bi-lateral maculopathy.
I have had good control for a couple of years now but it can take up to 3 to kick in . I have macular oedema because of an underling weakness but my real misfortune has been that i do not respond to avastin .
Without laser i would have to have seroid injections every two monhs rather than six. It is very effecive -in the right hands.
I supose it is all down to expectations and it does take a while to come to terms with it but it is not one of theose conditions
where you are absolutely helpless and just have to wait for the inevitable deterioration.
You can work at reducing or stabilising your levels. at he very least this will help to prevent other complications.
It can be a hard road but no need to despair .
I know it won't seem so to you but after my first two sessions of laser when there was too much fluid for the laser to work , I feel that the laser treatment I have had has been extremely successful
of course it is not a stand-alone process and much depends on your diabetes conrol bp etc but I am amazed i can still see with bi-lateral retinopathy and bi-lateral maculopathy.
I have had good control for a couple of years now but it can take up to 3 to kick in . I have macular oedema because of an underling weakness but my real misfortune has been that i do not respond to avastin .
Without laser i would have to have seroid injections every two monhs rather than six. It is very effecive -in the right hands.
I supose it is all down to expectations and it does take a while to come to terms with it but it is not one of theose conditions
where you are absolutely helpless and just have to wait for the inevitable deterioration.
You can work at reducing or stabilising your levels. at he very least this will help to prevent other complications.
It can be a hard road but no need to despair .
You are always so wonderfully positive unbeliever ... even if your name isn't 
.
I do think there is a lot of truth in what you say people with problems tend to post more ... I guess if it's all going ok perhaps you just don't want to tempt fate :roll:
.I do think there is a lot of truth in what you say people with problems tend to post more ... I guess if it's all going ok perhaps you just don't want to tempt fate :roll:
SouthernGeneral6512 said:You are always so wonderfully positive unbeliever ... even if your name isn't
I do think there is a lot of truth in what you say people with problems tend to post more ... I guess if it's all going ok perhaps you just don't want to tempt fate :roll:
Yes, I am quite positive about my retinopathy and maculopathy problems - the username relates to the mismanagement of my diabetes which was only sorted out BECAUSE of the eye problems.
I didn't always feel positive about it - I have spent a great deal of time attending the hospital over the past 5 years and at times it has been difficult. It is necessary to be proactive abou your own care if you want to ge the best out of it.
Wee my consultant to leave my positive attitude would change very quickly!
SouthernGeneral6512 said:
I don't know about that. it makes me very sad to read of posters being given anti-depreassants because of a referral to the eye clinic after screening. Surely more could be done to reassure people without going to these lengths.
I know from my own experience that there is a lack of understanding about the effect such a referral has on patients .
Oten even when they get to the eye clinics they can be chaotic and very busy and the patient is left even more confused and worried.
You wouldnt think it was beyond "them" to provide some patient information. Especially in circumstances where stress can
exacerbate the problem.
Suppose most of the doctors and nurses haven't been through it themselves so they can't really know what it's like ... perhaps to an extent they can but not fully :sick:.
I'm always surprised that the first port of call for treatment isn't avastin rather than blasting away at the retina ... perhaps that would make patients a little less squeamish? Although I suppose that has it's own problems as well
I'm always surprised that the first port of call for treatment isn't avastin rather than blasting away at the retina ... perhaps that would make patients a little less squeamish? Although I suppose that has it's own problems as well
Ha ha! You really think that those errified of laser would prefer an injectio in the eye.?
Firstly , it works best at drying the fluid but is very expensive and has a lower success rate han laser alone in the majority of new cases. Laser is still necessary after avastin. Avastin is successful in less than a third of cases but often needs to be repeated.
In my hospital if the eye is too flooded for laser and shows no sign of responding to laser or drying up than a seroid injection is ried first. These only last for 2 months without laser - for about 6 months without. If the eye does not improve for longer than the short term then acvastin may be ried. Once again laser is necessary as a follow up but it works in a different way and I don't think it carries the same gkllauconma risk as the steroid. It iworks in the same way as the horrendously epensive lucentis which was not approved by NICE and is used off-licence.
The injections are not the easy option in anyone;s terms and carry more risks than laser.
Avastn does absolutely nothing for me so lucentis wouldn't either. I have steroid injections followed by laser if the injections are successful. In this case they must be repeated in about 6 months . if unsuccessful more often.
These injections get the full operating theatre treatment and carry a high risk of reinal detachment and blindness as well as infection
and may make the condition worse.
No, of the two I am sure most would opt for laser. Unpleasant it may be but it doesn't compare to having needles stuck in both eyes.
and up to four weeks of huge floaters which in themselves impair the vision plus all the ey drops etc. let alone the amount of time spent in hospital . You are ot admited to a ward for laser or given incredibly ecruciaing iodine eyewashes and up to en lots of eyedrops. Also you don't have to go hrough the full discharge process before being released. I have spent between 4-8 hrs in the hospial on each occasion. The only tiny consolation is that it is the only time i ea toast when they give me tea and toast afterwards.
No there is no comparison!
Firstly , it works best at drying the fluid but is very expensive and has a lower success rate han laser alone in the majority of new cases. Laser is still necessary after avastin. Avastin is successful in less than a third of cases but often needs to be repeated.
In my hospital if the eye is too flooded for laser and shows no sign of responding to laser or drying up than a seroid injection is ried first. These only last for 2 months without laser - for about 6 months without. If the eye does not improve for longer than the short term then acvastin may be ried. Once again laser is necessary as a follow up but it works in a different way and I don't think it carries the same gkllauconma risk as the steroid. It iworks in the same way as the horrendously epensive lucentis which was not approved by NICE and is used off-licence.
The injections are not the easy option in anyone;s terms and carry more risks than laser.
Avastn does absolutely nothing for me so lucentis wouldn't either. I have steroid injections followed by laser if the injections are successful. In this case they must be repeated in about 6 months . if unsuccessful more often.
These injections get the full operating theatre treatment and carry a high risk of reinal detachment and blindness as well as infection
and may make the condition worse.
No, of the two I am sure most would opt for laser. Unpleasant it may be but it doesn't compare to having needles stuck in both eyes.
and up to four weeks of huge floaters which in themselves impair the vision plus all the ey drops etc. let alone the amount of time spent in hospital . You are ot admited to a ward for laser or given incredibly ecruciaing iodine eyewashes and up to en lots of eyedrops. Also you don't have to go hrough the full discharge process before being released. I have spent between 4-8 hrs in the hospial on each occasion. The only tiny consolation is that it is the only time i ea toast when they give me tea and toast afterwards.
No there is no comparison!
I've had a real mixture of attitudes from the doctors at the NHS hospital I go to (manchester). Some seem quite indifferent, brusque and dismissive. One, when I questioned whether I would lose my driving license if I had more laser simply said 'It's your choice.' I said 'it's not much of a choice is it?'
Someone mentioned in another thread that perhaps they have to detach themselves a bit from the emotional side of it to get on with their jobs. I can relate to that a bit. I used to work in a job where I was involved in giving people bad news- in my case that they would potentially be made redundant. It was necessary to shut off a little from the emotional side of things, although I tried never to show this to the people I was dealing with.
Having said that I've seen some much more reassuring doctors on the NHS who've tried to allay my fears a little. Although, looking back, as my condition got worse I'm not sure if they were sugar coating the info they were telling me as I was led to believe the laser was working, I was responding to it well and then - boom - a bleed. I guess no one can really tell in advance.
I am now quite frankly scared of entrusting my sight to the NHS if my condition were to deteriorate further, or happen in my better eye. I would quite happily have laser in the early stages, but if that didn't work I would definitely go private again, and will be saving up an emergency eye fund as soon as I've got over paying for my latest treatment, in case I ever need it in the future.
Someone mentioned in another thread that perhaps they have to detach themselves a bit from the emotional side of it to get on with their jobs. I can relate to that a bit. I used to work in a job where I was involved in giving people bad news- in my case that they would potentially be made redundant. It was necessary to shut off a little from the emotional side of things, although I tried never to show this to the people I was dealing with.
Having said that I've seen some much more reassuring doctors on the NHS who've tried to allay my fears a little. Although, looking back, as my condition got worse I'm not sure if they were sugar coating the info they were telling me as I was led to believe the laser was working, I was responding to it well and then - boom - a bleed. I guess no one can really tell in advance.
I am now quite frankly scared of entrusting my sight to the NHS if my condition were to deteriorate further, or happen in my better eye. I would quite happily have laser in the early stages, but if that didn't work I would definitely go private again, and will be saving up an emergency eye fund as soon as I've got over paying for my latest treatment, in case I ever need it in the future.
Unbeliever said:
With you on most of this unbeliever, but for me the big big downside of laser is the risk of losing my visual field and therefore driving license. I can't help feeling that an avastin injection before my last lot of laser (on the NHS) may have slowed the progression of my retinopathy enough for the laser to work. But I am also aware that avastin is only a temporary measure and without the laser as well, the vessels will start growing again once it wears off. I think it works best to give a window of time in which other, more permanent treatment can take effect.
I didn't find the injection itself that bad, probably on a par with having a session of laser, but the iodine wash that lingered in my eye for hours afterwards - my that hurt!
I wasn't disputing the efficacy of injections . As I have said many times I owe my sight to the combination of steroid and laser i have been treated with for some years. I am not sure what you mean by "more permanent treatment."
I dont think vitrectonmy is ever going to be routine. Too risky in most cases.
Totally agree that avastin is not too bad. In my case totally ineffecive but much easier than the steroid injections i have every couple of months.and wihou he side effects.
My poin twas that I don' believe that most new patients would prefer an injection to laser. Most are scared enough by the thought of laser but sticking pins in your eyes?
None of it is as bad as it sounds of course. Avastin or even lucentis on their own only seem to work for macular degeneraion.
laser is always needed to "fix" the injections . Avastin or lucentis would be the only viable choices for use with a vitrectomy or cataract operation because they dont' have the side effecs of steroids.
I dont think vitrectonmy is ever going to be routine. Too risky in most cases.
Totally agree that avastin is not too bad. In my case totally ineffecive but much easier than the steroid injections i have every couple of months.and wihou he side effects.
My poin twas that I don' believe that most new patients would prefer an injection to laser. Most are scared enough by the thought of laser but sticking pins in your eyes?
None of it is as bad as it sounds of course. Avastin or even lucentis on their own only seem to work for macular degeneraion.
laser is always needed to "fix" the injections . Avastin or lucentis would be the only viable choices for use with a vitrectomy or cataract operation because they dont' have the side effecs of steroids.
ShyGirl said:
Well this is the whole problem. I could have been given Avastin early on when I was first told I had very active vessels, this would have given the laser a chance to work, but although i mentioned it to my consultant she refused saying that it was only temporary and I needed a permanent solution.
Unbeliever this is what I meant when I mentioned more permanent solutions - ie laser, or vitrectomy - as for PDR (not sure about maculopathy) there is evidence that the vessels start to grow again after the avastin has worn off, severl months, unless there is laser or something else done too.
I just think they are really reluctant to do anything apart from laser on the NHS until you've been in the system a while and proved nothing is working. By then of course you may have more damage. But my personal experience was that I was told i had very active high risk PDR, was denied avastin and told I just needed laser, when this did not work and I had a bleed I was told more laser was the only option... at this point I exited the NHS got a private consultation and was told more laser would be ineffective and I needed a vitrectomy.
So now my trust in the NHS is pretty low!
Shygirl the situation you mention, of sitting waiting for laser when an injection could lessen the odds, is exactly what happend to me! I had to pay privately in the end to get my hands on that avastin - perhaps I would have got it eventually on the NHS, perhaps not, but I didn't feel I could afford to wait any longer.
Now I know that intravitreal injections and vitrectomies carry risks, but then so does not doing it. In my case, as laser did not work, the risks of these procedures was far less than what could happen if they were not done. I didn't really have a lot to lose.
I have PDR and maculopathy.It is still standard in my hospital as in many others to ry laser firstand this often works.
If it doesnt you get a consultant referral, fairly quickly I must say, I had mine after two sessions of laser and the consultant
then decides whether you would benefirt from injections. This is normally a steroid injection to begin with , followed by laser. The eye should be as dry as possible to enable the laser to work efficiently.
If this does not work sufficiently then they will try two injections of avasin to see if this will work for a particular patient. Before this limit was introduced i had 5 and none worked for me.
The only treatment they have is laser and injecions . To date at least. In the NHS vitrectomy is not reall regarded as a reatment but as a last resor, highly risky procedure . Which it probably is at that stage. As I said i don't see it becoming routine and it is not appropriate for every patient.
Regarding the injections , Shygirl I do think it worthwhile pushing the issue. Not every hospital offers the reament and it is sometimes necessary for the paient to be sent to another hospita for injections. They obviously don't like to do this .
Apparenty before the consultant I seee took up his post patients had to travel about thirty miles to another hospital for the treatment
and I doubt that many would even know it existed.
my'our consultant anticarb! will send patients anywhere he thinks they will get more appropriate treatment and take gPs to task if he feels hey are not treaing patients properly. They don' all do his of course, too much trouble , bureaucracy etc.
regarding lucentis NICE has not agreed to fund it on the NHS but it s still possible to have it in some circumstances.. Avastin does the same thing bu tmore cheaply
here is no permanent guaranteeed treatment for retinopathy. It is not a stnd-alone disorder but a side effect of diabetes so there cant be . Good control helps but is no guarantee.
If it doesnt you get a consultant referral, fairly quickly I must say, I had mine after two sessions of laser and the consultant
then decides whether you would benefirt from injections. This is normally a steroid injection to begin with , followed by laser. The eye should be as dry as possible to enable the laser to work efficiently.
If this does not work sufficiently then they will try two injections of avasin to see if this will work for a particular patient. Before this limit was introduced i had 5 and none worked for me.
The only treatment they have is laser and injecions . To date at least. In the NHS vitrectomy is not reall regarded as a reatment but as a last resor, highly risky procedure . Which it probably is at that stage. As I said i don't see it becoming routine and it is not appropriate for every patient.
Regarding the injections , Shygirl I do think it worthwhile pushing the issue. Not every hospital offers the reament and it is sometimes necessary for the paient to be sent to another hospita for injections. They obviously don't like to do this .
Apparenty before the consultant I seee took up his post patients had to travel about thirty miles to another hospital for the treatment
and I doubt that many would even know it existed.
my'our consultant anticarb! will send patients anywhere he thinks they will get more appropriate treatment and take gPs to task if he feels hey are not treaing patients properly. They don' all do his of course, too much trouble , bureaucracy etc.
regarding lucentis NICE has not agreed to fund it on the NHS but it s still possible to have it in some circumstances.. Avastin does the same thing bu tmore cheaply
here is no permanent guaranteeed treatment for retinopathy. It is not a stnd-alone disorder but a side effect of diabetes so there cant be . Good control helps but is no guarantee.
I hear what you're saying Unbeliever. I just can't understand why I was told Laser was the only option for me by two NHS consultants, and then my/our consultant said that Laser would be ineffective and I would need the op. Someone got it wrong and I don't think it was Mr. C! So you may understand why I am very sceptical about the NHS now. I'm already saving up for my next private vitrectomy should the other eye ever need it! Yes really - I sold my car on Tuesday and put the money into my 'eye account'.
Also, from the research I have read, early vitrectomy is preferable (to leaving it) in cases of florid, laser-resistant PDR such as mine.
What I don't get is, yes I know all these procedures have risks -but so does leaving it! So you're balancing the risk of blindness from doing nothing versus the risk of blindness from having a procedure that goes wrong. Gues which I chose. And when I saw all that gunk being pulled out of my eye - from the best seat in the house! - I knew I'd done the right thing.
I can totally understand why they try the laser first, it's effective, fairly non invasive and works a lot of the time. But perhaps a one size fits all approach is not appropriate with retinopathy any more than it would be with diabetes as a whole. There does certainly seem to be a difference between florid, often uncontrollable, very fast developing PDR as I had (and others on this site) and the more slow developing common-or-garden kind.
Anyway I'm glad Mr. C is so injection-friendly, think I will ask to be referred to him on the NHS for regular checks once I'm sure the op has worked.
Also, from the research I have read, early vitrectomy is preferable (to leaving it) in cases of florid, laser-resistant PDR such as mine.
What I don't get is, yes I know all these procedures have risks -but so does leaving it! So you're balancing the risk of blindness from doing nothing versus the risk of blindness from having a procedure that goes wrong. Gues which I chose. And when I saw all that gunk being pulled out of my eye - from the best seat in the house! - I knew I'd done the right thing.
I can totally understand why they try the laser first, it's effective, fairly non invasive and works a lot of the time. But perhaps a one size fits all approach is not appropriate with retinopathy any more than it would be with diabetes as a whole. There does certainly seem to be a difference between florid, often uncontrollable, very fast developing PDR as I had (and others on this site) and the more slow developing common-or-garden kind.
Anyway I'm glad Mr. C is so injection-friendly, think I will ask to be referred to him on the NHS for regular checks once I'm sure the op has worked.
Well I was fortunate enough to encounter MR c on the NHS bu not before someone had fried my retina.!
I am very sceptical about the NHS and retinopathy too. I know laser has been around for years but the reament of diabetic eye disease seems only now , wih the increased numbers diagnosed to be getting into its stride as a discipline in its own right.
No I do not have the "slow growing "type i have been legally blind for two prolonged periods.
Unfortunately I feel that reating incresaed numbers will only result in poorer treatment for everyone although people with some experience of it are demanding more. It is no going to happen. The only hope is for the new treatmens in the pipeline to be
put into ppractise. Currently it is more expensive for the state if a person loses their sight. This may not always be the case.
Mr C may not have been free to come to the same decision re yyour vitrectomy as he did when you saw him privately.
This is a fact of life and no refecion upon him as you know.
My feeling about the drs i have met pre-consultant level is that they were very pleasant and well meaning but but even with the senior registrars there is a huge gaop betweeen them and a consultant in thi sdiscipline.
The Dr who fried my retina - and the poor woman really did her best I am convinced, also kept insisting I had glaucoma .
A visiting consultant told me that my eye pressures were perfectly normal and it has never been menioned since!
The strange thing about eyes is that although he professionals can see some things you cant see , noone but yourself knows what you CAN see. Many people have to settle for a compromise.
I don't think we should encourage people to think that if NHS treatment doesn't work immediaely there is no hope for them if hey can't aafford a privae vitrectomy and that if they do they will then be cured.
Mr C is more than injection -friendly he is a pioneer .Even so, on the NHS this is restricted and it is possible to watch the increased pressuure and its efects. The cost of ongoing private treatment for someone such as myself would be prohibitive.
others are more fortunate and it may well be worth their while to pay privaely for a procedure as you did anticarb.
I just worried that people would think they were getting inferior reatment if not offered a vitrectomy immediately on the NHS.
I am sure MR C will have taken all the circumstances ino account in deciding that his was appropriate for you.
The key to it all is to find smeone you can trust. if not in the first hospital you attend then elsewhere if necessary.
I am very sceptical about the NHS and retinopathy too. I know laser has been around for years but the reament of diabetic eye disease seems only now , wih the increased numbers diagnosed to be getting into its stride as a discipline in its own right.
No I do not have the "slow growing "type i have been legally blind for two prolonged periods.
Unfortunately I feel that reating incresaed numbers will only result in poorer treatment for everyone although people with some experience of it are demanding more. It is no going to happen. The only hope is for the new treatmens in the pipeline to be
put into ppractise. Currently it is more expensive for the state if a person loses their sight. This may not always be the case.
Mr C may not have been free to come to the same decision re yyour vitrectomy as he did when you saw him privately.
This is a fact of life and no refecion upon him as you know.
My feeling about the drs i have met pre-consultant level is that they were very pleasant and well meaning but but even with the senior registrars there is a huge gaop betweeen them and a consultant in thi sdiscipline.
The Dr who fried my retina - and the poor woman really did her best I am convinced, also kept insisting I had glaucoma .
A visiting consultant told me that my eye pressures were perfectly normal and it has never been menioned since!
The strange thing about eyes is that although he professionals can see some things you cant see , noone but yourself knows what you CAN see. Many people have to settle for a compromise.
I don't think we should encourage people to think that if NHS treatment doesn't work immediaely there is no hope for them if hey can't aafford a privae vitrectomy and that if they do they will then be cured.
Mr C is more than injection -friendly he is a pioneer .Even so, on the NHS this is restricted and it is possible to watch the increased pressuure and its efects. The cost of ongoing private treatment for someone such as myself would be prohibitive.
others are more fortunate and it may well be worth their while to pay privaely for a procedure as you did anticarb.
I just worried that people would think they were getting inferior reatment if not offered a vitrectomy immediately on the NHS.
I am sure MR C will have taken all the circumstances ino account in deciding that his was appropriate for you.
The key to it all is to find smeone you can trust. if not in the first hospital you attend then elsewhere if necessary.
Lets have some positivity unbeliever what treatments are in the pipeline? When I was waiting to go into my doctors room last time I was thinking in another time there will be a cure in that room but unfortuntaely in this time it's a laser sitting there
But this is what happened to me Unbeliver! I was offered inferior treatment on the NHS! Not saying this would always happen to people, but it did in my case and I shudder to think what might have been had I not taken the private option. I've tried not to generalise, but just told my story and if people want to interpret that in a way that portrays the NHS in a negative light, maybe that's because it DOES portray the NHS in a negative light.
I didn't want to go and spend £6k on medical treatment and I'm certainly not rich - hey I was looking forward to furnishing my new house with a brand new sofa, getting some new carpets, perhaps planning a holiday...all that's out the window now.
If other people have more positive tales of retinopathy treatment on the NHS I'd be happy to hear them, but mine has been horrific. From the research I've read, early vitrectomy and early avastin have proved to give good results but they aren't being used as a matter of course, why not? probably cost has a lot to do with it, and the fact that all opthalmology departments are probably oversubscriped due to the diabetes explosion the past 20 years, which is now resulting in more and more new cases of complications. I just think there is massive scope here for people to be failed by the system. If people are fortunate enough to have laser and it works and they're home and dry, then great - but for those where it is not working they need to look at other things apart from more laser. I was specifically told by Mr. C that more laser would not help me, as the vessels were growing into the jellly - and if that's the case for me then presumably that's the case for other people with vessels growing into the jelly. Incidentally, the vessels were growing in to the jelly from March, I know this because the consultant i saw then insisted on telling the medical student this before he'd even spoken to me, after examining my eyes.
In my particular situation I felt I had no other option but to go private - and would do the same again. Others may be luckier than me and I wish them the best with NHS treatment, but I'm not going to sugarcoat or downplay what happened to me, because it was one of the worst experiences of my life and it's forums like this where you can tell the tale.
It's a good point you make about your eyes getting better ... as I understand it mammals can't regenerate their retinas (but fish can :x ) so how can there be an improvement for us?
