the_anticarb
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I shoulda been born a fish!SouthernGeneral6512 said:
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Good experience of laser with prolific retinopathy?
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the_anticarb
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ShyGirl said:
Shygirl the only way to find out the answer to your original question is to pay for a private consultation and ask what treatment would be recommended, as all the answers you get on the NHS are tempered by the cost basis for the decision.
Earlier in the year, before I'd had the laser, I did see someone privately and he said I needed laser but I'd get this on the NHS so no need to go private. At this point, he was probably correct - the docs were expecting the laser to work and that should have been the end of it. It was only later after four sessions of laser when it started to bleed that I started to get different answers from private vs nhs. What galls me a little, is that the week it started bleeding I went to the emergency clinic three times and was told each time that I would need more laser. I did ask one guy what would happen if that didn't stop the bleeding and he said eventually i would be referred to a vr surgeon. But then when I saw another consultant the next day, as it had bled again, she said the only treatment was laser and when I said 'what about the operation' she said 'oh has that been mentioned to you?' I got the impression that they do not like to mention this option to patients, so that they don't have to defend their decision not to do it. But for someone with a serious blinding medical condition surely the logical thing would be to say we'll try this and if it doesn't work we can try x or y. Not just 'the only treatment is laser'. At that point I began to strongly suspect I was being fobbed off and thought it was time to explore other (private) avenues.
In your case it sounds like the vessels have not proliferated yet, but you have to be open to the possiblity that they may do at some point in the future because when you get to the advanced pre prolif stage (not sure if you are or not) it is difficult to stop the progression without treatment. some doctors advocate lasering at this stage as there's probably only one way it's gonna go, but others don't like to laser before the new vessels have started. When I was seen in December last year, I was told there were changes but it was still pre proliferative, and all they did was say come back in three months. I'd love to know what would have happened if I'd had laser then, would my left eye still have gone bonkers to the point of needing an op? I'll never know. But the right eye, which was lasered towards the end of my pregnancy when the new vessels were just starting to appear (i was being checked much more regularly then) has behaved itself pretty much since then with just one short top up session which has stabilised it - for now. So I don't know if the point at which they catch the proliferation (which is pot luck, depending on how frequently you are seen in clinic and when it starts to 'go') has an effect on the outcome. In my mind, the disease gets on a roll so if they can stop it before it really gets some momentum maybe this is where they get the best results, but if you are unlucky and you're not seen before it's really got underway maybe this is when it is more difficult.
I think the disease can stabilise when you've had enough laser, not for everyone but for most. Of course, this may involve losing your visual field but there are worse things in life than not being able to drive - like being blind!
I wish you all the best Shygirl and whilst my story may not be the greatest please don't think it will happen to you like that because it probably won't.
Have you read the link noblehead is always posting - http://www.diabeticretinopathy.org.uk? That has a wealth of info on it so may answer some of your questions
Unbeliever
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I have suffered from the NHS reatment of my reitinopahy too. Vitrectomy in either eye is not an option for me because of the earlier treatment.
I have however noticed many improvements during the 5 years I have been attending he hospital. As it takes seven years to train an opthalmologist I epect it will take some ime o filter throiugh. Even within the more enlighened hospitals there is a grea difference in how Drs treat patients.
Since i started posting on here I have ried to make people aware of some of the options etc which it took me some time to learn about -, in much he same way as others elsewhere on the forum advise T2s on a dietary option which the NHS doesn' tell them about but which could prevent complications{probably would have for me].
It is all very confusing and frightening at first and I think anticarb is perfectly righ when she says it gets "on a roll" and takes off and you have to hope you or the Drs catch it in time.
I have never tried to underplay or sugarcoat anything for myself and wouldn't expect anyone else to do so either . The diffficulty with this condition is that i is not usually something which can be cured with one procedure and thus would be worth selling all your assets or taking out a huge loan to fund. Private reatment for this condition would be ut of the question for most people .
It is a fact of life anywhere hat if you can pay for i you will be offered reaments not available to all.
Consltants on the NHS are hardly allowed to tout for private business. You saw a private consultant who reassured you didn't you anicarb? This may have been a mistake , a lack of udgement or experience or it might have been a conclusion hat anyone might have come to at that time. In every reputable private clinic the consultants have to hold an NHS post. You are perfecly correct to say that on the NHS the decisions are empered by cost - in fact I made hat point myself but patients are at liberty to ask if there is any , more effecive treatment available privately and they will be answered. This is them tempered by cost - bu to the individual's ability to pay.
people should not assume that because the first Dr they see cannot give them a definite prognosis and advise a wait and see policy that this is a sign of inferor treat ment and that they are doomed to blindness on the NHS.
Most will see a private consultant only after a preliminary period wih the NHS anyhow . The reassurnce they get from the consultant at an early stage will mean little. Much of the problem is because he disease is a side effect of and connected with diabetes.
I hardly need to test my blood , for example , I can tell by the vision in my left eye . if all around looks fairly stable , albeit with bits missing and wavy lines its fine. If everyhing looks smalller and overlapping with not a straight line o be seen and I lose my depth perception etc etc. them n my blood sugar is too high. So I am constantly made aware of he link between the two things.
That is why I feel a prognosis is difficult. for the condition in any circumsances. Of course, if you know what is needed and can afford to pay then this is the ideal solution but things are not always so clearcut for any condition .
As I said earlier and as is the case with everything , patients should be made aware of all the options so that hey can then decide what to do. We have a strange aitude to the NHS in some ways I think. We have been brought up to believe it is all -powerful and acts only in the best interests of the individual. It is too big for that. Individual Drs and others will try to justify the arrangements they have in place rather than referring the patient elsewhere which might be in their best interess. It is necessary to learn to
take responsibility for your own health - very difficult when you are ill and frightened but so it is as i have found both about the diabetes and the eye condition.
It is the fact that I have twice come back from blindness and that i have witnessed an improvement in standards and treatment since I began to suffer with reinopahy which gives me hope. This is not just confined o my hospital papers written by the consultant are available to all ophalmologists and vice versa.
Yes i agree he biggest hreat is from the increased number of referrals but this should lead to improvements eventually oo. It has certainly helped t fund more research and a greater urgency to ge these into operation.
I certainly don't blame anyone for cpoping with this errifying condition in any way they can but i am not asdespairing of the NHS as you are anticarb. I often witness sufferers being discharged and told they can now visit their own optician..The last time I suggesed hat an optician might help nme to make the most of the sight in my better eye the "NO"! could be heard 3 rooms away!
I feel very strongly that paients should and could be beter informed but it is a diffficult area. Knowledge is always power .
I would be happier if hose referred o the eye clinic after screening could have some decent advice while they waited in terror for their appoinments . I would like to see he treatment explained better also.
egarding avasin it should be remebered that only about 28% of patients respond positively to this which is why it is "rationed"
Lucentis was not approved by NICE because he results did not justify the cost. Many more patients could be treated with a cheaper drug lke avastin. The sterid injections i have carry a very high risk of glaucoma and retinal detachment
The NHS have to be more conscious of the risks - just because they are the NHS and accountable. The situation totally different in a private clinics.
I am very grateful that I was alllowed 5 avastin injections on the NHS. They di not work for me at all. Imagine if I had funded that privately. I think I have been a guinea pig o an extent with my treatment because it is all so new and i have noticed changes as a result of some of the treatment i have had. thats fine with me . happy to have been of use. That is one of the ways in which i know that things are improvng. I strongly believe that we should push for good treatment for all on the NHS . Of course those who can afford o do so always have the option to go elsewhere. I have that option myself t a limited extent but am saving it as a last resort and for when I may no longer have access to he excellent care i receive from our consultant.
Of course people should be free to vent their frears and tell their stories and this is the place to do it but many of us have some positive experience of NHS treatment in this area too
I have however noticed many improvements during the 5 years I have been attending he hospital. As it takes seven years to train an opthalmologist I epect it will take some ime o filter throiugh. Even within the more enlighened hospitals there is a grea difference in how Drs treat patients.
Since i started posting on here I have ried to make people aware of some of the options etc which it took me some time to learn about -, in much he same way as others elsewhere on the forum advise T2s on a dietary option which the NHS doesn' tell them about but which could prevent complications{probably would have for me].
It is all very confusing and frightening at first and I think anticarb is perfectly righ when she says it gets "on a roll" and takes off and you have to hope you or the Drs catch it in time.
I have never tried to underplay or sugarcoat anything for myself and wouldn't expect anyone else to do so either . The diffficulty with this condition is that i is not usually something which can be cured with one procedure and thus would be worth selling all your assets or taking out a huge loan to fund. Private reatment for this condition would be ut of the question for most people .
It is a fact of life anywhere hat if you can pay for i you will be offered reaments not available to all.
Consltants on the NHS are hardly allowed to tout for private business. You saw a private consultant who reassured you didn't you anicarb? This may have been a mistake , a lack of udgement or experience or it might have been a conclusion hat anyone might have come to at that time. In every reputable private clinic the consultants have to hold an NHS post. You are perfecly correct to say that on the NHS the decisions are empered by cost - in fact I made hat point myself but patients are at liberty to ask if there is any , more effecive treatment available privately and they will be answered. This is them tempered by cost - bu to the individual's ability to pay.
people should not assume that because the first Dr they see cannot give them a definite prognosis and advise a wait and see policy that this is a sign of inferor treat ment and that they are doomed to blindness on the NHS.
Most will see a private consultant only after a preliminary period wih the NHS anyhow . The reassurnce they get from the consultant at an early stage will mean little. Much of the problem is because he disease is a side effect of and connected with diabetes.
I hardly need to test my blood , for example , I can tell by the vision in my left eye . if all around looks fairly stable , albeit with bits missing and wavy lines its fine. If everyhing looks smalller and overlapping with not a straight line o be seen and I lose my depth perception etc etc. them n my blood sugar is too high. So I am constantly made aware of he link between the two things.
That is why I feel a prognosis is difficult. for the condition in any circumsances. Of course, if you know what is needed and can afford to pay then this is the ideal solution but things are not always so clearcut for any condition .
As I said earlier and as is the case with everything , patients should be made aware of all the options so that hey can then decide what to do. We have a strange aitude to the NHS in some ways I think. We have been brought up to believe it is all -powerful and acts only in the best interests of the individual. It is too big for that. Individual Drs and others will try to justify the arrangements they have in place rather than referring the patient elsewhere which might be in their best interess. It is necessary to learn to
take responsibility for your own health - very difficult when you are ill and frightened but so it is as i have found both about the diabetes and the eye condition.
It is the fact that I have twice come back from blindness and that i have witnessed an improvement in standards and treatment since I began to suffer with reinopahy which gives me hope. This is not just confined o my hospital papers written by the consultant are available to all ophalmologists and vice versa.
Yes i agree he biggest hreat is from the increased number of referrals but this should lead to improvements eventually oo. It has certainly helped t fund more research and a greater urgency to ge these into operation.
I certainly don't blame anyone for cpoping with this errifying condition in any way they can but i am not asdespairing of the NHS as you are anticarb. I often witness sufferers being discharged and told they can now visit their own optician..The last time I suggesed hat an optician might help nme to make the most of the sight in my better eye the "NO"! could be heard 3 rooms away!
I feel very strongly that paients should and could be beter informed but it is a diffficult area. Knowledge is always power .
I would be happier if hose referred o the eye clinic after screening could have some decent advice while they waited in terror for their appoinments . I would like to see he treatment explained better also.
egarding avasin it should be remebered that only about 28% of patients respond positively to this which is why it is "rationed"
Lucentis was not approved by NICE because he results did not justify the cost. Many more patients could be treated with a cheaper drug lke avastin. The sterid injections i have carry a very high risk of glaucoma and retinal detachment
The NHS have to be more conscious of the risks - just because they are the NHS and accountable. The situation totally different in a private clinics.
I am very grateful that I was alllowed 5 avastin injections on the NHS. They di not work for me at all. Imagine if I had funded that privately. I think I have been a guinea pig o an extent with my treatment because it is all so new and i have noticed changes as a result of some of the treatment i have had. thats fine with me . happy to have been of use. That is one of the ways in which i know that things are improvng. I strongly believe that we should push for good treatment for all on the NHS . Of course those who can afford o do so always have the option to go elsewhere. I have that option myself t a limited extent but am saving it as a last resort and for when I may no longer have access to he excellent care i receive from our consultant.
Of course people should be free to vent their frears and tell their stories and this is the place to do it but many of us have some positive experience of NHS treatment in this area too
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As I said in a previous thread on diabetic retinopathy, I cannot fault the care and treatment I received on the NHS, I'm still reviewed every 9 months and my only gripe would be the waiting times in clinic (although sometimes it isn't too bad).
the_anticarb
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That is heartening Noblehead, whenever I feel despairing about my condition I remember that you and others on this forum have had severe retinopathy and come out the other side with vision and driving licences intact! Glad you found your treatment on the NHS was good.
Robinredbreast
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the_anticarb said:
Here, here
RRBSouthernGeneral6512
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Yes they can also regrow their heart muscle so no long lasting problems from heart attacks too ... sometimes it's hard to be a mammal :lol:the_anticarb said:
the_anticarb
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The intravitreal drugs (avastin, lucentis) can cause the vessels to regress, but without laser this is only a temporary solution.
I've heard laser is effective in treating advanced PDR around 90% of the time, for the other 10% though this will not be enough and the vessels will continue to grow.
It's the other 10% (of which I am/was one) that I am worried will not get optimal treatment.
I just worry that I was told laser would be ineffective once the vessels are growing in the jelly by the private consultant, yet the NHS seem to laser away like billyo even when this is the case.
Personally, I don't think you can take chances with your eyes and even if I had no money at all I would rather get in debt than take my chances IF my eyes did not respond to laser. It is always worth trying the laser first though.
My reasoning is that if I can see, I can work and pay the debt back but if I lose my vision my whole life would change.
Other people may have different priorities though, or just not be able to raise the money.
take care people! remember that whilst controlling your bg's bp etc is good for the long term, it can take a while for this to affect your eyes so may not make a difference in the short term.
I was reasonably well controlled for 2 years before my bleed and it still happened.
I've heard laser is effective in treating advanced PDR around 90% of the time, for the other 10% though this will not be enough and the vessels will continue to grow.
It's the other 10% (of which I am/was one) that I am worried will not get optimal treatment.
I just worry that I was told laser would be ineffective once the vessels are growing in the jelly by the private consultant, yet the NHS seem to laser away like billyo even when this is the case.
Personally, I don't think you can take chances with your eyes and even if I had no money at all I would rather get in debt than take my chances IF my eyes did not respond to laser. It is always worth trying the laser first though.
My reasoning is that if I can see, I can work and pay the debt back but if I lose my vision my whole life would change.
Other people may have different priorities though, or just not be able to raise the money.
take care people! remember that whilst controlling your bg's bp etc is good for the long term, it can take a while for this to affect your eyes so may not make a difference in the short term.
I was reasonably well controlled for 2 years before my bleed and it still happened.
sarahleslie
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I have macular oedema and am having laser eye treatment Friday morning....!!! SCARED!!!!!
The dr who has made the decision has not told me a thing...i don't know what is going to happen etc and terrified of the results :-(
The dr who has made the decision has not told me a thing...i don't know what is going to happen etc and terrified of the results :-(
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Understandably your scared, just a shame your consultant didn't explain the procedure involved.
Have a read of the following as it explains what will happen on the day:
http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html
Good luck and hope all goes well.
diabeticguy
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Just back from the eye hospital. feeling very confused and kicking myself for not taking more notice of what was being said by the quite flippant and nonchalant doctor. Basically he suggested that the retinopathy has got worse, has now become maculopathy and that he wants to see me in 3 months to see if there is any further damage. He mentioned laser treatment. I have finally digested what he said and am now panicking. I will have to wait for a copy of the letter he is sending to the GP so that I can ascertain what was said. I don't feel that my eyesight is any worse than it was last year but obviously have to accept what the specialist says as he has seen the damage. Just trying very hard not to flip out and not to react to my mental health demons.
diabeticguy
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I certainly feel your anxiety. Hope all goes well.
