Losing peripheral vision

[Kimkar001]

Hi not been on here for a while, but need some help please. I have had amd wet in both eyes for 6 years now. They stopped injecting my left eye about 18 months ago because I have lost central vision. I have just noticed I am starting to lose my peripheral vision in that eye as well. Went to hospital and was told the leak in my macular was causing a swelling outside which was causing me to lose my peripheral vision. I asked if they could inject to stop the leak was told no because i have already lost my sight in that eye. But it would restore my peripheral vision but apparently that does not count. They could not tell me if it would get bigger or smaller or spread just that they would keep an eye on it. (Hope it's their good eyes). Just makes me mad that they can do something to help but budget cuts won't allow them to do it. Anyone else had this happen to them. By the way I am 56. Thanks for reading.

[rosyG]

I haven't any knowledge about this but I wonder if you can appeal to your CCG on this- they have to agree funding I believe, As you are young it is worth a try. Also, I would check the guidelines as there's a chance it may be the injections are nit authorised for peripheral sight loss but that might be meant to be applied when people have still got central vision?? just a thought and worth questioning I think

Hope you get some answers on this

[Ayayay80]

Truly sorry to hear of your problem, Kimkar. That is attrocious! I agree with rosyG on everything she said. Do try to take it further. I just hope they are not taking too long over it. What is the point in keeping an eye on it if they are not going to treat you? Of course, you could go private to have that eye treated, but not everybody can afford it and there is no saying how many injections you would need to prevent the loss of your peripheral vision.

How can they weigh our health against cost-efficiency as is already happening in other fields of medicine and health care? How long will it be before us oldies amongst you are regarded as dispensible and no longer cost-effiecient to be treated? I know we all should be grateful for what our health service provides - and we are - but it is a worry, say the least.

I hope you will get the treatment you need and deserve. Insist, make a fuss, stamp your feet, do whatever it takes, just do not let them ignore you. Good luck and all the best.

[squinty]

Omg that's terrible, sorry not been responding much but I look at posts as I have much more health probs. I have. Wet macular in one eye and cancer is in that eye bit it's ok was at moorfields yesterday and they are Marvellous left eye was clear. You must get another opinion where do you live, can you get a referral to moorfields in London they are the best xxxx. You must fight fight you are too young, I'm so sad for you that is terrible

[Lynae in reply to squinty]

Squinty, I've been thinking about and the cancer. How are you doing?

[squinty in reply to Lynae]

Hellish but I'm hanging in there Thanks, I'm still looking at my daily posts from you guys and only occasionally I reply. There's so much to respond as macula degeneration is just as scary. I have secondary cancer in my mac eye but it's stable as I went to moorfields last week in their oncology dept. Left eye is fine phew ! My sight at least is ok and there are far worse cases for eyes. They have stopped the Eylea injections for moment but its ok. Thanks guys I know you are all thinking of me, wish I had good news, but I stlill find this site so helpful hugs to all of f you from Squinty xxxx❤❤️

[Lynae in reply to squinty]

Praying for you!

[Hidden in reply to squinty]

Sending endless waves of love xxx

[Hidden]

Hi kimkar sending you a hug x what a terrible position to be in x I agree with everyone else. Get a second opinion -under Choose and Book you are entitled to ask to be treated elsewhere including Moorfields. Don't wait, get your gp to refer you asap. Wishing you the best of luck going forward x

[Hidden]

Agree, look for a second opinion. It is outrageous that potentially you are being denied at least peripheral vision.

Squinty, eye cancer? That makes two of us here, I am treated at Liverpool, I am a patient rep' for OcuMel UK.