I have Keratoconus

[Kevin Delaney]

Hello All

I have just got back from my visit to Addenbrooke's in Cambridge, where I had it confirmed I have Keratoconus in my right eye. The docs said they hadn't seen one so bad in a long time. Basically it's too far gone for a lens, also I am slightly disabled and have no dexterity in my left hand, so lens would be dificult to manage. Basically a graft was recommended, but on talking to the actual consultant he said my left eye is very very good and he would advise me against the graft which may/may not help. He did say however if my left eye gets worse they will have no option but to go for a graft.

I am now on a survilence programme to be seen in 12 months to monitor the left good eye, he is very optimistic it'll be ok. As he said it's silly putting myself through the graft if I have a good quality of life at present.

Anyone have any thoughts.

Thanks alot for reading my post

Kevin

[jayuk]

Kevin


Few things from your post; I would strongly recommend that you see an Optician as well regarding the RIGHT eye....you may be surrpsied what options you have in terms of lenses.(assuming that none of the ppl you saw today were).

Further more, IGNORE any information from ANYONE who says that the Left eye will not get that bad or will stop progressing, or will get worse in 3 months etc. KC is unpredictable.....it can get worse within days or it can remain the same for tens of years.......its the nature of the beast!

If you go the graft route, discuss have a Partial Graft (if possible), and only have the Full Thicknesss graft if they say you have to due to the nature and condition of the tissue (corneal)

HTH

Jay

[Andrew MacLean]

Hello All

I have just got back from my visit to Addenbrooke's in Cambridge, where I had it confirmed I have Keratoconus in my right eye. The docs said they hadn't seen one so bad in a long time. Basically it's too far gone for a lens, also I am slightly disabled and have no dexterity in my left hand, so lens would be dificult to manage. Basically a graft was recommended, but on talking to the actual consultant he said my left eye is very very good and he would advise me against the graft which may/may not help. He did say however if my left eye gets worse they will have no option but to go for a graft.

I am now on a survilence programme to be seen in 12 months to monitor the left good eye, he is very optimistic it'll be ok. As he said it's silly putting myself through the graft if I have a good quality of life at present.

Anyone have any thoughts.

Thanks alot for reading my post

Kevin

Kevin

Good to welcome you to the forum. the advice you were given seems pretty sound to me, but I do agree with Jay. Don't give up on your right eye just yet!

Life can be pretty yard for those of us with good dexterity, but I cannpt imagine how much worse it must be if that dexterity cannot be taken for granted. All I can do is wish you well.

Yours

Andrew

[Kevin Delaney]

Hi Jay

thanks for that reply. One of the guys I saw was the hospitals contact lens specialist, who tried to measure me up. They were really nice and infact said that I should keep an eye on the suituation and if it changes do not wait a year get in touch straight away.

The consultant said "If your left eye wasn't so good, i'd have you in next week to do the graft."

I had my last options eye test in Jan.

thanks

Kev

[jayuk]

If thats the case, then I would consider a graft now not latter...as then you can rely on the Left eye....this is assuming that the RIGHT eye is as bad as you say.....however I would be inclined to get a 2nd opinion as graft is a big thing!

J

[John Smith]

Hi Kevin, and welcome.

As has been said above, even though you've seen a contact lens specialist, it can still be worth being seen once you know the sort of options available and can ask the relevant question.

Assuming though that your KC eye is not suitable by any form of contact lens, then I would also agree with JayUK: consider the option of a graft now, whilst the good eye is still good. As has already been mentioned, noone can predict if or when the good eye will go bad, and if you wait until then for the graft, that would leave you with no useful eye for a few months!

[Andrew MacLean]

For what it is worth, I agree with all of the above. The alternative would be to wait until your left eye became as disabled as your right, and you were left with very poor sight indeed.

Andrew

[Ali Akay]

Kevin,
I happen to know the corneal specialist at Addenbrookes and I can tell you he is EXCELLENT. So,if he's advising you against a right graft at present, I am sure there's good reason for it. How old are you by the way? It's very well for Jay and others to express their opinions based on their experiences, but I do sometimes feel that they can be a bit over-zealous about dishing out clinical advice without knowing all the facts.You would do well to take your consultant's advice on this one.

[Prue B]

I personally found my second graft much harder to deal with than my first, I had great vision out of my left eye for my second graft, but i had all manner of problems with it, and have more work done to it since. I had 2 successful grafts, I am glad I had them, and would never reverse that descision if given it now. But my personal exprerience is it is better to wait. After my first graft I had a hell of a time sight wise for 6 weeks (yes I was lucky only 6 weeks) then I attained 6/6 in my left eye. Still have not attained that in my right. Not complaining it is just the way it is. Strangley I had a better recovery with my left eye because I was more disabled. I had to take it easier. For me slowing down is difficult I took the time I needed and coped. It was a growing stage. With my right eye life was as normal, but the eye never has been as good.
My sister had earlier grafts than me and her story for both eyes is similar to my right eye story.
I put this down to 2 reasons forced convalesence and greater ability for the brain to interpret images.
That is my story, everyones is different, but I personally see valid reasons to wait.

[GarethB]

Ali,

I think very few of us give 'Clinical Advice', when we are ask for thoughts that is certainly what I try and do but the often needs sharing the clinical advice we received to put things into context.

Just my view