irregular vessel growth

[Andrew MacLean]

Del

all the best. I knoiw this must be a worryng time for you.

Let us know how things go

andrew

[morag]

I’m sorry I didn’t reply sooner but as an old sufferer you just get on with things!!!!!!!!!
I’m no better off I really do believe the pain is related to my periods and the fluid retention on the body – hence the eye, nobody seems to want to listen. I had my graft when I was 18, I am now 44 surely by now I am the best judge of what’s happening to my body I know the cycles I know my pain. Sorry for the rant.
I suffer with the pain daily but I deal with it, its only when it comes to that week it is intense, its like someone putting a sharp pin into the eye all day
I don’t take drugs – I’ve taken them all and it doesn’t work it just hides the problem I have tried pain clinic, I have tried all sorts but I’m back to square one.
I need to know if anyone else is suffering the same, as now its beginning to wear me and I have really really had enough try to tell myself I’m better off than a lot of people but it really doesn’t help sometimes.
Thanks for listening

[GarethB]

Delyth,

You have pm.

[donna]

Regarding the hormone thing, my mum has Muscular Dystrophy and was getting really bad pains in her limbs but it was only there before her period was due. She now has the contraceptive injection to stop her periods and this has helped with the pain..........maybe it would work for you?

[morag]

No its not PM, as it happens in-between also, its is not midlife either, as its been going on now for at least 15 – 20 years and I have been down both those roads. This is not a recent thing, it is defiantly something to do with the fact that the stitches to leaving it scared and it is a weak section left in the graft causing the pain (This was the junction the irregular vessel growth started to appear!!!)
But thanks anyway
Any support groups or people in North Wales??????
Take care xx

[Louise Pembroke]

After a couple of episodes of rejection with my 2nd graft I had vessels growing into my graft and something coming out of them. I think it was called something like lipid keratopathy, I can't be sure because that opthamologist who sealed them off with a laser was not forthcoming about information. It was like trying to get blood out of a stone from the miserable git. However, the laser treatment worked, it sealed them off. Before I had that done, I had a test, what I would call the cornea equivalent of an angiogram. It wasn't done at Moorfields, the other place Marylebone, and they injected dye into my vein [arm] and took pictures of the vessels

[morag]

thanks for that
How long ago was that? have you sufferd with pain in the eye since?
This sounds wrong but its so good to hear someone might understand!!!!!
Thanks so much
Del x

[Louise Pembroke]

Quite a few years back, approx 13. Sometimes since experienced a few 'pin prick' kind of pains but just ad hoc

[morag]

I don’t want to hound you but -
Did your eye feel swollen?
Did it make the left hind side (or the side of the hurting eye) of your head feel like a tonne of bricks?
It felt like someone was pushing a needle in?
Did the pain affect your teeth?
Did you just want them to take the eye out as the pain just got too much?
How did you get them to listen?
Where did you get your graft done? How old were you? Was it a success?
Sorry for all these questions it just might be the same
Thanks again
Del x

[Louise Pembroke]

I had my first graft done about 22 years ago [Sussex Eye] and 2nd about 15 years ago [Moorfields], I'm in my early 40's now.
The first graft went very well, but developed a high degree of post graft astigmatism. Without correction I see 1/36. I can't be fitted with glasses but a RGP gives me 6/6.
The 2nd graft was not a success, about 4 stitches became loose soon after surgery which had to be replaced, I had 2-3 episodes of rejection, one I was admitted for, for the injection just below the eye and hourly drops. Then the vessels grew into the graft and required laser treatment to seal them off. I cannot see any letter on the eye chart with that eye, I count fingers at 1 metre, and hand waving at 6 metres. I could be fitted with a scleral lens but I can't physically handle it, I hate them [sorry ken]. Besides it doesn't access that much vision. An RGP is not viable because the cornea is too irregular. So although the graft survived, I wouldn't call that one a success.
When I had the vessel growth I didn't experience swelling, pain in the teeth, anything like that.
I very occasionally get a needle-like pain in that eye at the 11 o' clock position, and I can get double vision in that eye, especially if I'm tired and reading.
Lx