Maculopathy, exudates and focal laser

[AJLang]

I've just had the letter which confirms maculopathy and exudates in the left eye. I wondered if anyone else had received a similar diagnosis in the past and if yes how they dealt with it? I'm really scared about what will happen if things worsen, particulary as they had deteriorated in the ten weeks between eye scans. I'm not impressed with myself for not dealing with it as positively as I would like to. Any thoughts/suggestions very appreciated.

 

[margie]

AJ you are being too hard on yourself. You are bound to be upset and worried, you wouldn't be human if you weren't. The drip drip drip of bad news is bound to take its toll.

Can you contact your eye specialist for some information - or maybe for information on a support group who could help you come to terms with things.

I can't offer you any insight as I have not been in your position but you are very much in my thoughts.

 

[AJLang]

Thanks Margie, the closest info that I've found is the macular society but they don't seem to have anything about diabetic maculopathy. The exact term in my letter was "exudative maculopathy" so I googled that term only to find out that it is the leading cause of blindness in the working population of the western world!!!! My specialist is good but I don't think he can say anything about prognosis especially as my original retinal vein occlusion usually only occurs in the over 65s........as my OH said I'm probably an interesting case for someone to write up in a scientific paper. Guess I should be pleased that I've only got background retinopathy!! Anyhow guess I should try not to worry about it because worrying won't change anything and will just spoil the time that I have with eyesight that I still have......sorry just realised that I'm withering on

 

[Northerner]

Hi AJ, I'm sorry, I'm not much help either. I did find a site which appears to explain all retinopathy well, albeit technically (you may already have read it):

http://www.mrcophth.com/guidelinesindiabeticretinopathymanagement/section8.html

Wishing you well, as always.

 

[AJLang]

Thanks Alan I hadn't seen that link before. Part of me wonders if they left the treatment too late because I was told that there were some problems four year's ago but they never did anything with it and it now appears to be too late. On a lighter note the first paragraph of the article all applied to me apart from being elderly.....unless 42 is elderly?........😱

 

[cherrypie]

Sorry to hear your news, cannot begin to know how you must feel.

This site may be helpful, I put a search in and your condition does come up there.

http://medweb.bham.ac.uk/easdec/Information_for_patients.html

 

[AJLang]

Thank you Cherrypie this site is really helpful and has loads about retinopathy. I really appreciate you carrying out the search🙂

 

[Twitchy]

Hi AJ,

I wish I could add something practical, but whilst I don't know anything info-wise that might help, what I can do is send a hug ((((()))) and let you know I'm thinking of you! I know how scary it can be when it feels like your eyes are in trouble...hang on in there though hun, don't despair - sometimes things aren't as awful as they initially seem. Sending best wishes & prayers your way!!

Twitchy xxx