another wannabe eye update - for anyone interested - seems I may have been misdiagnosed all those years ago..

[wannaBe]

Well went back to the hospital today and saw the consultant. And he was lovely.

Basically he said that I am to keep using the drops long-term and he will see me again in six months, providing the pain doesn't return, in which case he wil see me immediately.

So I asked him what could have caused the cateracts and he said that in reality he didn't know, but that it was likely that I had been born with some kind of retinal atrophy (sp?) which can sometimes lead to cateracts in later life. He said that as the cateracts were now in the way he was unable to see the retina to confirm this though.

Now when I was diagnosed all those years ago, they said there was nothing wrong with my eyes, or my optic nerves, so the cause must be in the brain. However I also had a brain scan and no damage to the visual cortex was ever detected either so it really was put down to just being one of those things. But now he says that there clearly was an issue with the eye because the cateracts wouldn't have formed otherwise.

He said that if the cateracts being there were affecting my sight in any way, he would remove them, he also said that if the pain returns he would remove them, but he said that it would be fairly complicated surgery given the blood vescles on the surface of my eye so would only really want to remove them if it would be of benefit to me rather than just for diagnostic purposes, iyswim?

My mum is totally gutted. She says she feels cheated almost, because all these years she believed one thing and now it's something else. We lived in Africa when I was diagnosed, so now she's saying if only we'd come home to see specialists etc maybe things would have been different. But the specialist we saw was supposedly one of the best in the world so would things really have been?

Tbh I don't see any point dwelling on it. My lack of sight has never held me back, and if we'd come home maybe I would have had a much different life and wouldn't have met the people I have/done the things I have/wouldn't have the life I do now.

I'm glad your consultant was a good one. I'm also very glad that you arent in pain any more. Your poor Mum though - but you are right, your life has been what it has been and theres no point in 'what ifs'.

wannabe - well, how do absorb things like this?

I don't know how old you are, but lets say at least 20 - who knows if it would really have been possible to diagnose then what could be diagnosed now. It sounds as if you did see a reputable consultant, and had you been in this country, you still wouldn't have seen the consultant you saw today, and and and.

I think your philosophical and stoical response does you proud. It must be weird to keep having your personal history edited!

I see this a bit like a sliding doors senario. If you did one thing your life would turn out one way, do something else and it would have been different. But how could we possibly know if it would have been better? After all a different life doesn't necessarily equal a better one does it?

I'm 34, so am fairly sure that technology has moved on signifficantly since I was a baby, or even since I had the last serious batch of tests when I was 10. And those tests focussed mainly on brain function, had scan/skull xray to check for trapped nerves... etc and they looked into my eyes but got hugely frustrated because my nestagmas prvented them from getting a proper look. So again something which might have prevented them seeing properly.

But even if the diagnoses had been different, the outcome would probably still have been the same? I just can't get upset about it really.