Update on Son.

[Annie]

Today, my son went to the hospital to see the optometrist ( i think that is what he is called) to have his contacts sorted out. As you know from my last post, that Simon has been having problems with contacts and their fit. Well, he was told today that the contacts are no longer doing him any good and he would see the consultant today. We waited another hour before being shown in. To cut a long story short, the consultant has said the only thing forward for Simon is a corneal graft. He said there was two to choose from, one is shallow and the other is deep. He is now referring him to East Grinstead hospital to see the consultant there. This will mean a good drive for us as we live in the North West. We don't mind at all, if it means Simon will be able to see better in the long run. We are not sure which of the grafts he will have done until we see the consultant, who I believe is the person who did the intac talk at your last support group meeting.

Anne

[rosemary johnson]

wow, Annie! that sounds pretty drastic!
First, referring you all the way to East Grinstead, and secondly givingup on the lenses yet.
Has SImon tried lots of different types of lenses yet? - he shouldn't be lined up for a graft before trying out all other feasible options, surely.
generally these days, I think, most surgeons would prefer to do a "partially thickness" graft rather than a "full thickness" one - though some people need the full thickness version, because the layers than would be left in the partially thickness one have got scarring.
The partial thickness one is called a DALK, and - confusingly enough! - the full thickness is a "PK".
Did they say why East Grinstead in particular??
(I know that train line quite well - because E.G. is only two stops on from Lingfield races.......!!)
Rosemary

[Andrew MacLean]

Anne

all the best when you go to East Grinstead.

Other people who post here have given good reports of the hospital and the service it offers. When you go to the consultant in EG, be prepared to tell her or him what has been tried before; what sort of lenses have been tried etc. You might also be ready to indicate what lenses have not been tried and ask if there is any purpose to be served by these avenues being pursued.

We all wish your son well. If he has to have a transplant now, we all hope things go well.

And our good wishes are with you, too. It is hard enough to have to make these decisions for our own eye care, but it must be an absolute nightmare to have to make them for your son.

All the best

Andrew

[Annie]

Hi Rosemary. Simon has been wearing contacts for about 4 years now and at first they were ok, but recently they have been a problem for Simon. The optmetrist (sp) has been having problems getting Simon a fit. Anyway, yesterday I had a talk with him about the problems and he said one eye is being rubbed by the contacts and has caused a sore on the eyelid. Also the shape of Simon's eyes are very difficult to fit. He said he had tried lots over the past six months but can't get any to fit to give Simon good vision. Also Simon has to wear them at least 12 hours a day because of his job. He is a HGV mechanic and works 12 hour shifts, so he needs them to see. When I spoke to the consultant later, he said intacs wouldn't do anything for Simon and the only thing forward was a corneal graft. However, he said he didn't do them at his hospital but he knew a very good colleague, who is also a friend, who would do the graft, but he was in East Grinstead. He asked whether we would be prepared to travel and we said we would. I don't know if this the right thing to do or not, but Simon says he will do anything to see a little better otherwise he will lose his job soon.

Hi Andrew. Hopefully our consultant will tell the other consultant what they have used before, surely? We have no record of what they have used so far. Simon does have quite a lot of scaring on one eye, I have been shown it and it looks quite bad too me. Our consultant is not easy to talk too and was quite sarcastic with me because I went with my son, who is 31. I know he is a man but he doesn't understand things too much and that is why I go with him, his wife has to work and couldn't go. We are hoping he doens't have to wait too long to see the East Grinstead consultant, maybe he will try something else? WE will have to wait and see.

Annie

[Andrew MacLean]

Yes, there will be a report that goes with the referral, but you should be prepared to 'colour in the background'.

All the best

Andrew

[Prue B]

Anne I was 27 and 28 when I had my grafts done, and my mother sat in on both consults those descisons were made in. If your son required support then I am sure he was glad someone was there for him. It is a bit of a shock when it is decided and it helps, well it helped me, to have another person take it in and help you talk it through later. Good luck for his next consult. I hope all goes well for him.