my retinopathy hell continues...

This is one that you are going to have to trust the specialists .
I know that there are others that have had to have a lot of laser and sometimes vitrectomies who'll be able to give you more info from experience.
Sending a big metaphorical hug

No they can't give you any answers - or at least any honest ones.

In June last year my surgeon was in despair over me. As he said they only have wo treaments- injections and laser and neither was working for me. By Christmas after more injecions one eye showed marked improvement to the extent of showing as "almost normal " on the scan . After four years when everything , improved control , extensive laser etc only made things worse at last a breakthrough" By the time I went back for the laser there had been a deterioration. Back to square one with both eyes. The surgeon was upset. I have had a cataract because of the surgery and the operation to remove that also caused more bleeding.
I posted a while ago about my fears that the next procedure will be ineffecive if not carried ou by the right person. Its a roller coaster.

The thing is that a deterioraion in the condition does not necessarily mean a deterioraion in your vision.
My vision at present is better than it has been for quite some time. You just have to try to be opimistic. Easier said than done I know but i do feel that treatment ,in general ,is improving and hat here are other options in the pipeline.
I understand it is very rare nowadays for anyone to completely lose their vision through retinopathy. I was at the "legally blind " level before my cataract op but things have improved a lot since.

I find it is even more important to keep my levels stable than to keep them low. Although low is important in otther ways.

Has anyone suggested injecions to dry up the fluid before laser? I understand laser will not work if there is too much fluid present. Not all hospitals do this yet but here is generally one in the area where it is performed.
Avastin is used as an alternative to the very expensive lucentis which is not approved by NICE. It is equally successful in many cases.You could enquire about it perhaps.

Noone can give you a definitive answer because it differs from individual to individual. I have had countless laser sessions and many injections . In spite of everything I can still see and hope that my sight can be preserved until there is some more permanent treatment available. I understand that NICE have approved steroid implants so this should be available in the near future which will cut the number of treatments necessary.
Most of the ime I can and do cope to the extent that my sister tells everyone I jave injections in my eyes and don't mind but sometimes I despair .

Over the last month i have had an appointment a week including an angiogram for the condition. BUT after nearly five years they have not given up on me and I havent given up on myself.

Just try to remeber that they are treating the condition and that is not necessarily the same as vision.
people are naturally horrified at any threat to their vision but like most things you become accustomed to it particularly as time goes on and you find you can still see.
You may find that your current treatment will be sufficient to correct matters. I hope so. It is extremely unisual to have a condition as resistant as mine and I am not despairing.

I save that for my diabetes reviews. My levels are good but the HCPs.........

My reinopathy was caused by my bg levels being reduced too quickly and exacerbated by too intensive laser on a very "wet" retina, My eye never recovered, I assumed I would lose the vision in that eye and resigned myself to that.

I was totally devasated when the other eye was also affeced . The worse hing was that noone else , family ofr friends understood what an enormous difference this made to me .It was a very lonely t.ime.
I have macular oedema in both eyes abd the effects of this are almost impossible for others to understand.
I have come to terms with it in general . The worst hing is when you think you are doing well - and the scans say otherwise,
I have scans every ime I og to the hospital
.As I said a deterioraion in the condition does not necessarily mean a deterioraion in vision. The hospital think my left eye is in a better state than my right but I don't notice this in my vision. My left eye is subject to distortions while my right is fairly stable and the central vision is stable.
I feel that they maybe rely a little too much on visual actuity tests. As this is a diabetic problem it should be recognised that vision flucuates with blood sugars but they dont seem o consider this, Even in studies his never seems to be aken into account
and I have eve read some where a reatment has been deemed o be successful on the basis of an improvement in actuity of a single letter. if they tested my eyes at different times of the same day they would egt different results.

I coped by geting to know the staff who were treating me and learning how the system worked and trying o ensure I was reated by the person I trusted most whenever possile. t times it has been very daunting .
I think this whole area has sood still for some time but in view of the incresing numbers diagnosed with diabetes and retinopathy there is a new impetus to develop treatments,

I can understand that you wnt to act responsibly and try to make informed decisions about your future but I am sure you will not find anyone prepred o give you any guarantees. because they can't.
While it is necessary to inform yourself as much as possible things are now moving very rapidly.

There is a very small group who don't respond to treatmment. I respond only to steroid injections which only last a few months.
As the side effecs can last for a month you can see this is not ideal.
You may be fortunate and respond to avastin if appropriate which doesn't have these side effects.

It is really very rare hese days for people to lose their sight through diabetes, I rust my consultant absolutely because he is honest with me. It ook some time to get to that stage - I am not the world's most trusting person- but trusing them is the key.
I understand why you want o look ahead but think you just have to take one ting at a time ofr the moment until you have an opportunity o see how yo react .
I understand there are even oral medicaions in the pipeline. I am really confident about treatment improving all the time .
I hope you soon feel a litle reassured about the whole thing.

The hardes thing in any of this , just as in the diabetes is o accep that whatever you do you can't change the underlying condition. As ypu say you WILL get your head around it eventually but it takes time.
I started o feel better when I got to know my consultant who is as direct , not to say blunt , as I am , I have never asked him for the worse case scenario because I know what that is so it is unnnecessary.

When I first met him , after havig two sessions of laser which hadn't worked he said he thought he could help me . He explained about the injecions , and asked if I was prepared o y. he old me what the worst ase scenario was for the injections.
Quite a high risk of glaucoma , reinal detachment and blindness. So you see , there are no easy options.

In my hospital they start with seroid injections. This is done in the operating theatre under local anaeshetic . The avastin injections do not require the full surgical paraphernalia.

Laser works for many people. It is less risky for the patient , If it doesn't work they then consider the injections,. Its as well to be aware of this ption.

I KNOW that my consultant will ell me the true risks of any procedure and will admit when something hasn't worked.
I KNOW he doesn't know how my particlar disease will progress .
There have been imes when I have wondered why I am coninuing o go through all this - but I can still see alhough I am hardly one of their success stories, In fact - it may no show on the resukts but my sight , in everyday terms has improved a little over he klas few years.

Unfortunately i does ake ime to come to terms with it and o learn o trust them. My consultant has helped me to get beter reatment for my diaabetes as this obviously affects the condition. Unfortunately the improvement can take a few years o affect he condition,

I am obviously a great deal older han you and know you want o get on with planning your life. Although I have retired I still have responsibilities and vulnerable people depending on me . In fact I think I have more paperwork to do now than in any job I have ever had and I have been a teacher and a civil servant.

It is still very early days for you. One of he hardes things is to wait but if this laser works for you - and it takes some time o work fully hat may be he end of the maer for you . I do hope so and I do sympathise but the consultants can;t tell you anything definite because hey don't know .

People ask me all the ime what the prognosis is and are incredulous when I tell them that there isn' one. Others hink I am having the age related macular degeneration treatment .
YThe truth is that if I had been given a prognosis when i was diagnosed nearly five years ago it would have been much gloomier han one given oday.
Research some of he new reatments in the pipeline . These are not things which might be brought in in the distant future but are about to be introduced.
I hope you can achieve some peace of mind soon.

Sorry about your news anticarb

Oh you poor, poor anti-carb, I truly feel for you. But I think you need a little space right now, work through all the information that you have been given so far. The thing is that no consultant is going to tell you that all iwill be perfect, not matter what, everything in life comes with a risk tag. One of my consultants once said to me that HCPs work to the CARE principle which stands for CoverA"$eRemainEmployed, it made me laugh, of course nobody can give us a guarantee ever that things will turn out well 100%.

You have seen the consultant on a private basis, you have been told that you need to stabilise your current condition, then re assess the situation. I know its so hard all of this, but do try not to look ahead too far, and most certainly not at the worst case scenario. Instead do try to become as healthy as you possibly can, mentally and physically.
Do something really nice each day, do soimething relaxing each day, do something funny each day, eat lots of fresh good food each day, plenty of vegetables and berries, good protein and good fats, enjoy today, take it one day at a time, make sure you have a good talk/rant every single day too, about the unfairness of the entire situation. This is major PRECONCEPTUAL CARE, hard work to fit all that into one day, huh? But try to work out a plan to suit you, and remember that all this upset and stress is not good for your bg levels, its not good for any of your organs, and good things are already happening, you have started laser treatment you will now be closely monitored and you have quite a few tools to try and achieve optimum health.

I have lost central vision in my right eye, the left eye is perfect, despite laser treatment, I have not lost my driving licence.
Someone recently mentioned Pycnogenol to me, I will ask about this supplement next time I am at the clinic for a check up.

http://www.ncbi.nlm.nih.gov/pubmed/12498513

http://www.diabetesaction.org/site/Page ... ntary_7_07

A very big hug for you, I wish you well
Judith
x x

Thats it Anticarb. You sound like a very strong person. Fingers crossed for you that all goes well.

Touchwood I have only had one bad virus since diagnosis. Strangely enough It occurred soon after my bg levels took an overnight dive on change of medication but as a result of the virus my new miracle medication stopped working my levels rose and medication had to be drastically and ineffecively increased. Interesting.

the_anticarb said:

I've been thinking about why this sudden progression now, it does not make sense. Just found some research on t'net linking the development of prolific retinopathy to viruses - because of how the body responds to the virus (sorry do not understand all the science) this can create growth factors that would make the retinopathy progress, particularly fast.

This is very interesting because I had a very bad virus in January and was laid up for 2 weeks, the doctor thought it could be labrynthitis but wasn't sure. I was really ill with a bad flu-ey thing, though, so whatever it was it was definitely a nasty virus.

Could this have made my retinopathy progress, particularly so fast?

I have not heard of a link with viruses before, but I guess anything that involves growth factors needs to be considered.

Has anyone heard anything like this before, as it really would explain things for me .

Click to expand...

I've read of some forms of herpes causing retinopathy, but am uncertain of the science behind it, sorry. I've been under treatment for both conventional forms of retinopathy for a few years now since having been on Lantus (completely unsuspected, as my HBA1c levels have always been lauded by endocrinologists, except for now when my 7.5 average is suddenly the cause of the retinopathy!). Has anyone reported problems with Lantus/retinopathy or know of any hard data on the matter? Another forum here mention Lantus and cancer links, which I've also seen elsewhere on the web, but have yet to find the clinical trials that mention this stated explicitly. My commiseration to anyone suffering diabetes or diabetes treatment related eye problems. The viral growth link is interesting though, as I was in bed last year with quinsy, a viral infection of the tonsils and will look into this too (even though during that period my sugars went hypo, not hyper).

My eye problems seem to co-incide with a viral infection from traffic fumes here in Bali. Check out my posts on Blurred Vision, etc you may see a connection. Please do not panic too much - the fact that many here say the vision is good one day and bad the next seems to give some hope...
Rob

There is very little informaion for patients abou diabetes and eye problems. I can understand why this is but bu I am sure that somehing could be done.
I recognise in many posts the panic I once felt, ideally there should be someone available in he hospital to whom patients could speak of their fears. This person could then give feedback to the DR reating the patient and help to allay some of their worst fears .

Eyes are naurally a very emotive subject. bu it is such a complicated and individual subject that when people are left to search the net for information they often frighten themselves more.

Even information given out in hospital leaflets is someimes incorrect . I well remember searching for information after my first session of laser. Some hospitals produced leaflets for paients which were available on the internet.
I sensed that there was something wrong after the laser but had been given very little information. I found one of those leaflets
and was reassured hat my symptoms were conpletely normal. So when I went back to he hospital I underwent more laser wih no complaint.
The leaflet had been adamant hat seeing flashing lights and other symptoms for a few MONTHS after laser reatmen was perfectly normal. When i wen to bed at night I would see a firework display bu after reading the leaflet I was no longer concerned.
This was toally incorrect. Those symptms should only have lasted for 3 days at he most. As a result my retina was scarred and will be unsuitable for further treatment in that eye once laser is no longer possible. Thank goodness hat at that stage only one eye was affected! It was too late to reverse the treatment after the first session but he second intensive treatment could have been prevented.
It is very difficult to write general information for patients paricularly for diabetic eye disease as much depends on the diabetes.
Therefore any advice has to be tailored to the individual, Even then so much is unpredictable and Crystal Ballls are not standard ospital equpment.
I feel quite strongly that more could be done to reassure patients but don't underestimate the problems. I think I am going to make enquiries at the hospital I may well be hat there is already something in place but that patients are not aware of it.
I have beeen going here for five years and have only learnt through experience and vis the good relatonships I have developed with staff.
There must be an easier way.
To coin a phrase used elsewhere SOMETHING MUST BE DONE. Ther have been many terrified posters here - imagine how many there are out in the wider ommunity?

I just wanted to share my eye problems as well. At about 5pm this evening, I have had yet another background bleed Looking at the screen now is difficult, it is so bright i am moving my head about because of the brightness. My bleeds look as though a child has drawn lots of squiggerly lines with a black marker pen. Then I had red dots in my vision, so an even newer one. Thia continually happens in my right eye, the left eye appears to be good. Couldn't have laser treatment last time because iut s like' murky waters in there'. My eye is very heavy and feels wet. At the time my BS was 9.7 about 2 hours after eating. It seems to clear up after weeks and then I get another bleed. I do feel for the rest of you who are going through similar problems.

I have had about 3 or 4 laserings and I absolutley hate it. I grip hold of my trouser leg and keep thinking, it will be over soon, it will be over soon. My consultant is great nad a truly nice down to earth guy, who called me a shortarse last time ( because I was too far away from the equipment and couldn't reach the floor with my foot lol) so he does put me at ease and he asked me how I managed to get about and see things!!!!!! but I still have a good eye. At the moment the right side of my face around the nose area feels differnt as well. It is worrying but I wont let this stop me douing the things I want to do, especially riding my bike, with a good pair of sunglasses. I just feel a bit fed up at the mo. Take care guys I have tried checking for mistakes in typimg hope there's not too many.

If you manage to get your levels bg and bp and cholesterol etc down, Robin at least you will know you have done all YOU can.

es the good sunglasses are essenial aren't they? I wish I could afford several pairs to keep in different handbags as our lovely British weather keeps catching me out1

was just struck by some of your remarks which intrigued me so I have to ask. Don't they use an adjustable chair and don't you have armrests on the table with the eqiuipment? I hate laser too but it is preferable to blindness,
iNow that I have had so much laser one of my eyes is very sensitive and takes ages to recover and some of the light is almost painful. It is very important to be in a comfortable position for laser . I am not sure i could keep as still as is sometimes necessary without the arm rests.
I am glad your consultant is a nice uy - it makes such a difference. laser is demanding on both parties. My consultant is always calm and reassuring with laser as well as in the operaing theatre. it makes such a difference. Unfortunately they are not all like that,

TYpos Robin? I can' see my own let alone anyone else's !

Unbeliever said:

There is very little informaion for patients abou diabetes and eye problems. I can understand why this is but bu I am sure that somehing could be done.
I recognise in many posts the panic I once felt, ideally there should be someone available in he hospital to whom patients could speak of their fears. This person could then give feedback to the DR reating the patient and help to allay some of their worst fears .

Eyes are naurally a very emotive subject. bu it is such a complicated and individual subject that when people are left to search the net for information they often frighten themselves more.

Even information given out in hospital leaflets is someimes incorrect . I well remember searching for information after my first session of laser. Some hospitals produced leaflets for paients which were available on the internet.
I sensed that there was something wrong after the laser but had been given very little information. I found one of those leaflets
and was reassured hat my symptoms were conpletely normal. So when I went back to he hospital I underwent more laser wih no complaint.
The leaflet had been adamant hat seeing flashing lights and other symptoms for a few MONTHS after laser reatmen was perfectly normal. When i wen to bed at night I would see a firework display bu after reading the leaflet I was no longer concerned.This was toally incorrect. Those symptms should only have lasted for 3 days at he most. As a result my retina was scarred and will be unsuitable for further treatment in that eye once laser is no longer possible. Thank goodness hat at that stage only one eye was affected! It was too late to reverse the treatment after the first session but he second intensive treatment could have been prevented.
It is very difficult to write general information for patients paricularly for diabetic eye disease as much depends on the diabetes.
Therefore any advice has to be tailored to the individual, Even then so much is unpredictable and Crystal Ballls are not standard ospital equpment.
I feel quite strongly that more could be done to reassure patients but don't underestimate the problems. I think I am going to make enquiries at the hospital I may well be hat there is already something in place but that patients are not aware of it.
I have beeen going here for five years and have only learnt through experience and vis the good relatonships I have developed with staff.
There must be an easier way.
To coin a phrase used elsewhere SOMETHING MUST BE DONE. Ther have been many terrified posters here - imagine how many there are out in the wider ommunity?

Click to expand...

You have to wonder how could the official leaflet have got it so wrong? :sick:

SouthernGeneral6512 said:

Unbeliever said:

There is very little informaion for patients abou diabetes and eye problems. I can understand why this is but bu I am sure that somehing could be done.
I recognise in many posts the panic I once felt, ideally there should be someone available in he hospital to whom patients could speak of their fears. This person could then give feedback to the DR reating the patient and help to allay some of their worst fears .

Eyes are naurally a very emotive subject. bu it is such a complicated and individual subject that when people are left to search the net for information they often frighten themselves more.

Even information given out in hospital leaflets is someimes incorrect . I well remember searching for information after my first session of laser. Some hospitals produced leaflets for paients which were available on the internet.
I sensed that there was something wrong after the laser but had been given very little information. I found one of those leaflets
and was reassured hat my symptoms were conpletely normal. So when I went back to he hospital I underwent more laser wih no complaint.
The leaflet had been adamant hat seeing flashing lights and other symptoms for a few MONTHS after laser reatmen was perfectly normal. When i wen to bed at night I would see a firework display bu after reading the leaflet I was no longer concerned.This was toally incorrect. Those symptms should only have lasted for 3 days at he most. As a result my retina was scarred and will be unsuitable for further treatment in that eye once laser is no longer possible. Thank goodness hat at that stage only one eye was affected! It was too late to reverse the treatment after the first session but he second intensive treatment could have been prevented.
It is very difficult to write general information for patients paricularly for diabetic eye disease as much depends on the diabetes.
Therefore any advice has to be tailored to the individual, Even then so much is unpredictable and Crystal Ballls are not standard ospital equpment.
I feel quite strongly that more could be done to reassure patients but don't underestimate the problems. I think I am going to make enquiries at the hospital I may well be hat there is already something in place but that patients are not aware of it.
I have beeen going here for five years and have only learnt through experience and vis the good relatonships I have developed with staff.
There must be an easier way.
To coin a phrase used elsewhere SOMETHING MUST BE DONE. Ther have been many terrified posters here - imagine how many there are out in the wider ommunity?

Click to expand...

You have to wonder how could the official leaflet have got it so wrong? :sick:

Click to expand...

It was issued by jus one hospital - not mine. Maybe it was based on a the experience of a snall sample of patients . Maybe even wih different condiions- you sometimes find those with age relaed macular degeneration treated in some ways in the same way as hose with diabetic eye disease. When I have my injections I am sometimes give leaflets intended for hese people.
Last ime the Nurse commented hat I might have floaters for a few days after my injections. I told her I did hope so. It was normally for a few weeks someimes four! She had taken her information from the leafle for a/R macular degeneration.
Although laser has been around fr several years he injections are a fairly new innovation. My hospital try all the new reatments on patients where they think they might help. that's great but could cause confusion..
I think that is why there is so little general information available to patients - the effects vary so much for each individual.
Not that it matters. It was too late once he damage was done. ouldn't be reversed.