STOPPING INJECTIONS

[difran]

AT WHAT LEVEL OF SIGHT LOSS DO WE NOT QUALIFY FOR SIGHT SAVING INJECTIONS, AND WHY

[Koalajane]

I think that is a question that you should ask your consultant

[springcross]

Hi difran. I agree with Koalajane, or you could ring the Macular Society helpline and see if they can help answer your question.

0300 3030 111

[difran]

THANK YOU BOTH, BUT I HAVE ALREADY ASKED CONSULTANTS AND THE MAC/SOC' . IT IS A FACT THAT AFTER A CERTAIN LEVEL OF SIGHT LOSS ,ONE IS NOT ENTITLED TO HAVE MORE INJECTIONS ON THE NHS. I CAN STILL SEE TO GET ABOUT, AND NOT REACHED SEVERELY SIGHT DISABLED. I WIIL ASK THE MAC/SOC FOR THE ACTUAL FIGURES.

[tallyho]

I no longer qualified for injections in my left eye when I got to 1/60

[Rosalyn-helpline Partner]

Dear difran,

I have copied a link for you that should answer your query:

macularsociety.org/news/nic...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[e-mail]

[Hrosie in reply to Rosalyn-helpline]

Thank you Rosalyn for this link to the really informative clinical guidelines. This is really helpful. I never cease to be amazed at the huge role played by the Macular Society in NHS hospital eye clinics. I have been attending my clinic for injections for 3 years & almost all of information I've been given is by courtesy of the Macular Society & their display of leaflets in the waiting room, especially considering that they are a Charity & rely on donations to exist. I support them as much as I can and urge others to do the same. Thank you so much.

[Rosalyn-helpline Partner in reply to Hrosie]

Dear Hrosie,

You are really welcome. Always contact us as needed and we will always try and help.

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[e-mail]

[difran in reply to Rosalyn-helpline]

THANK YOU SO MUCH ROSALYN , THAT IS SO HELPFUL, AND I AM EXTREMELY GRATEFUL.

[difran in reply to Rosalyn-helpline]

YES, THANK YOUROSLYN, VERY INTERESTING WFBSITE

[petr18]

Hi Difran. Hope you are feeling OK. Just wanted to update mypresent condition to bring some hope in the group. It will be a little long so please bear with me. I had CRVO in 2016 and vision went to 20/80. I had to be on Eylea every 6 weeks. But when affect of in went away, again straight to 20/80. The doctor did 5 laser sessions to treat peripheral ischemia. Vision improved but still had problem. The he put me on Ozurdex, I had cataract surgery in between and finally went back to Avastin. It all was treated by amazing doctor in Cali in Colombia. Dr Ocampo

To make it short, I had 7 Eylea, 4 Ozurdex and 6 Avastin with 11 Laser sessions in all.

Had appointment with doctor last Monday, vision is 20/20 and the fluid seems to have dried. He suggested no injection for the time being as vision is stable 10 weeks after last Avastin. My next appointment is in Jan and I am keeping my fingers crossed. For the time being, I am thanking God to have shown me some hope.

[difran in reply to petr18]

THANK YOU PETR18 , ITHINKYOU ARE VERY LUCKY TO HAVE SUCH WONDERFUL CARE. MUST BE POSTCODE LOTTERY, I WASVERY UPSET TO BE TAKEN OFF MY CONSULTANTS LIST WHEN I HAVE SIGHT LEFT WORTH SAVING. I AM VERY GLADTOBEABLE TO AFFORD A SYNAPTIC SMARTPHONE , AND A LARGE AND SMALL VIDEO MAGNIFIER. KEEP SMILING AND BEST OF LUCK. DIFRAN

[Shimano]

Thanks for asking that question difran. It is one that has been puzzling me. I have not had an injection since may. Next consultation on 30 Oct. vision has steadily deteriorated but consultant does not think injection necessary. I have PED which is fluid blister deep in the eye which is affecting my focal point. I found an introductory lecture for optical training on u tube which helped me understand better that md can effect eye at different .layers but still need to ask questions when I see him. Good luck to you on your journey. Glad you have found this site. It is a great support.

[Catseyes235 in reply to Shimano]

Because I had a mini stroke in May I missed my June appointment so had 17 weeks between injections. My right eye remained incredibly good and left deteriorated substantially in fact worse than before started treatment 4 years ago. I’m happy to report that I’m now back on track as left eye was given monthly injections and much improved.. wishing you the best for upcoming treatment.

[Shimano in reply to Catseyes235]

Thanks catseyes. I think the injections have not worked for me. My daughter finally spoke to the consultant and he told her that an op to move the focal point in my eye is the only treatment but there is no guarantee it will improve things. The local anaesthetic doesn’t seem to work for me and my last cataract op and my injections were very painful and I really don’t have the courage to have them as long as my right eye stays not too bad. Really pleased to hear your injections are effective and wish you all the best.

[difran in reply to Shimano]

I NEED MORE ANAESTHETIC DROPS THAN USUAL, DON'T BE AFRAID TO ASK FOR MORE, YOU GET TO KNOW WHEN YOUR EYE IS NUMB, AND WITH ANY LUCK IT WILL GO ON YOUR NOTES SO YOU DON'T HAVE TO ASK EVERY TIME.BEST OF LUCK

[difran in reply to Shimano]

THANK YOU, YES IT IS GOOD TO KEEP IN TOUCH WITH EACH OTHER. BEST OF LUCK, DIFRAN

[Catseyes235]

The videos which the Macular Society have flagged up are really worth a watch. The thing that has stuck with me is one specialist saying that everyone is different and reacts differently and there is no ‘one size fits all’ treatment. I hope they are not stinting on the anaesthetic . Yesterday I said I could still feel something and was given lots more anaesthetic drops.