TREATMENT IS NOT A CURE!

[Bazza1234]

I remember reading an article by a Doctor who was angry with his fellow Doctors - who he felt were giving false hope to Stage 4 Cancer patients in regard to their treatment by chemotherapy. Many of these patients were clinging onto a hope for cure from these chemo sessions. Nobody had told them that chemo is only a treatment and not a possible cure. My RS is not very helpful or informative - he mostly seems to ask me what I want him to do.!!!! I have now come to realise (not from any advice from him) that these monthly Lucentis injections are also only a treatment - stop the treatment and the macula edema returns. The injections did reduce the edema and my vision in my CRVO eye improved a little - but I was still a "count the fingers" patient - no real improvement in visual acuity at all. So I told him that having monthly injections for the rest of my life was untenable to me and he agreed with that. So he has now adopted a "wait and watch" monthly programme. I asked him about the possibility of future neovascular glaucoma ( and he was amazed that I knew about it). He said that there was no sign of it so far and after asking him what the treatment would be if it did appear, he indicated laser surgery. I am accepting of the future final full loss of vision in my CRVO eye - but am a little depressed that I feel that I have had to make this decision on my own about ceasing injections. I have a history of making bad decisions - but I am a logical sort of person and I just think that treatment of symptoms rather than the root cause of a problem is only putting off the inevitable - and there is no cure or solution to my root problem. . I am a bit frightened by the thought of glaucoma - as CRVO has been so far painless!! I have read through many of the posts on this forum - but I have not read much from people about the long course of their CRVO , the final destination that they have reached with it - nor much about neovascularization or glaucoma. These are well documented in articles about CRVO - so what has been the experience here over the past few years???

[Hidden]

Hi Bazza

I understand where you are coming from. I have wet AMD not CRVO, but the general treatment and outcome is the same. When did your initial treatment start? Did you have so much sight loss at the beginning or did it get worse despite the treatment? Before you stop treatment you need to consider this:

The "wait and see" has worked for me most of the time and may work for you too, but I had episodes when the fluid built up suddenly and massively. And each time that happens you run the risk of further damage. The fluid will always come back. Your macula is probably so scarred that your vision will never improve with our present treatment, but would it be worth trying to preserve the bit of vision you have? Maybe, just may be, if and when the stem cell treatment becomes available you may have a better chance of recovering your sight if there is some healthy tissue left in your eye. Just a thought !!!

I wish you well, Bazza, and hope you make the right decision. It is a dilemma.

[Lizleiper]

We all know treatment is not a cure, but what is wrong with hope? If you do not hope then you are wasting time and money ! I would do anything to keep my sight that I have . After 4 years of injections my sight is excellent. I am still driving and there is nothing I can not see or do. I will be eternally grateful to the NHS for prolonging my sight . I am very lucky indeed! Thank you NHS.

[eesnapal]

I spoke to one of our Consultants just last week and she pointed out to me that the purpose of the injections is to seek to preserve the eyesight at the level it was when AMD was detected and to dry up the macular condition where ever possible. Personally I have been fortunate that I was diagnosed early and my eyesight remains at 6/5 and 6/6. However the macular degeneration in my left eye has progressed to the point that I have been switched to an alternate drug.

I was further advised that 30% of those treated with Lucentis experience a drying out of the blood in the eye and that a further 30% experience a stabilisation all the while Lucentis is administered. She was vague about the other 30%!

My conclusion is that the overhead of monthly injections is a small one to pay to try and protect the functionality and performance of the eye. The aspect of your story that troubles me is that the advice you have been given seems to miss out a lot of this information. It has always been made clear to me that this is not a cure - it is a probable means of protection of my extant capability. All medicine is statistics your decision seems to have moved the probability in a direction I presently seek to avoid.

Yours

Steven (Let us know how you get on)

[Ayralin]

Ten years ago, before injections for wet macular degeneration became available, most people lost much of their central vision in the affected eyes. Although I intensely dislike my Lucentis injections, I consider it a small price to pay to preserve the sight that remains in my right eye. I understood from the beginning that this would be a life-long treatment to control the vision loss, barring any new treatments in the future. I don't think anyone I've met who shares this disease ever thought of it as a cure. My doctor surely did mot lead me to believe that.

I would rather be able to see something rather than nothing, so I choose to continue. But each person must make their own decision - the eye doctor can only explain the statistics and current results of studies. And there is even disagreement among experts. So gather info, weigh the possible outcomes, then decide your course of action. Let go of any guilt related to the choice, if there is any. And move forward. Always let go, move forward.

[Hidden]

Hi bazza, I have brvo but treatment is similar. 4 years on and I can still drive and read with specs. Although it has been a rollercoaster I am lucky that the permanent damage I have us relatively small although the oedema can be massive and would cause more damage if left untreated.

I guess it depends on what your vision is like as to whether it's worth preserving and only you can know that. I do find that I see better with both eyes even a damaged one rather than just the ' good' one alone so I will continue with treatment including drops for raised iop the inj caused ( ie drops to prevent glaucoma). Did you try the steroid implant? It avoids monthly inj but does have its own issues ( eg cataracts).

Best wishes going forward and hope you find peace with your decision.