I have Keratoconus

[rosemary johnson]

Hallo Kevin, and welcome.
As you'll have gathered, we're a multifarious and opinionated lot here, who will also answer a request for our thoughts!

As regards the monitoring - well, having to trek up to a hospital evry six months, sit aroundin a waiting room, get peered at, etc, is all a very boring hassle and tedious - and then very annoying to have spent that time and effort to be told there's no change and come back again and do it again in 6 months.
I think Kevin's consultant is absolutely right to say "Come and see us if you notice it getting worse" - and Kevin right to do so - and 12 months probably OK if he hasn't noticed any change.

as regards seeing the chart - I can't see the top letter without lenses; could just-about read half the 6/12 line with a lens in last week.

Can well imagine the difficulties of putting in a lens one-handed (it was bad enough a few weeks ago when I couldn't lean over the sink properly due to a kicked-by-a-horse sore bum!). And - though I'm sure yo and Addenbrook's have considered many possibilities - some lenses must be easier than others - sclrals, for example, being bigger and thicker are less fragile than corneal lenses.
Hope all stays well witht he left eye and grafts can be left till much later.
Rosemary

[Sweet]

Thought that i would just say a little something as well.

I was in the same position you are in, with one eye seeing exceptionally well with lenses but the other not being able to read the chart and not being able to tolerate any lens despite my years of trying.

I was offered a graft but turned it down as it just didn't feel right to me. I also trusted my optometrist in trying different lenses which in the long run didn't help, but it satisfied myself in the need to try.

15 years passed relying on one eye and only then did i have major problems which meant i could hardly see. Do i regret turning down a graft before the good eye got so bad? A little, but to be honest not really. I did what i thought was right, and while i left it until i could hardly see to get a graft done it was all ok. There is never a 'right' time to get it done.

The grafting decision is entirely up to you and you do need to carefully consider what your consultant thinks. Yes KC can get bad really quickly, but my main sight problems were down to corneal ulcers and infections, so being unable to wear lenses and not down to the KC in my good eye getting worse. In fact since i have had a graft done i'm not so stressed and my good eye has improved!

It is difficult for us to come here and post to others, as we are not trained and most of us post here because we have had major problems. I didn't start posting here until i was almost blind and completely lost it! I hope though that you can think on what people post and then make an informed choice on this.

Take care, Sweet X x X

[jayuk]

Ali

I appreciate what you say about me, but you see when we get seen by a Optometrist and then by a Corneal Surgeon things generally get confused.....as you may well know.

If Id beleived a Corneal Surgeon, I would have had to have a graft some 5 years back....rather than last year.....if Id have beleived one of your fellows from your profession my cornea would have burst and fallen off.....(agreed that not ALL have this inability and lack of understanding)

The whole point of this board, as you say; is "My understanding of this for forum is that it is a platform for sufferers to share their experiences and offer support to each other".

And that , in my opinion, is what I always set out to do. My responses, EACH TIME, are always my opinion based on my experiences and more importantly, balancing risk against quality of life.......where I am wrong I stand corrected and have always highlighted.....but if this very approach makes me "too involved" then I agree with you wholeheartedly

Furthermore; what I am not saying is that any of the advice and information people recieve frm professional bodies/personnel is incorrect; hell how can I?..Im not qualified!...What I am saying is that the advice we/KC people recieve is rather generalistic and blanket.....and covers KC in general rather than reffering to a persons individual condition

Let me give you another example...which may make you understand the approach to my responses!.....I was treated with SoftPerms for about 2 years...Unbeleivable comfort and vision, yet majority of people I spoke with in your field said they were bad and restricted oxygen and did this and did that.......I got 2 years use at 20/20! with zero effects (or 0 of the ones that were reported to occur)....without them I couldnt see the Snelling Chart......when these were no longer good.....my Optician said he is not sure how he can help now........thereafter I saw another Optician....he fitted me with an Intra Lymbal lens...for One year..where I got 20/40.......then my vision got worse......he then said he is not sure what to do..........Ken Pullum was next.....he fitted me with lenses that gave me 20/30.....and they lasted for 3 years..........Do you see my point?......It wasnt that what I was being told from EACH optician was wrong! or that they were just inadequate at there job!....I had to actually make this decision and go to other people MYSELF!....and thats what I am trying to get across within my posts.....sometimes you need to appreciate all this and do a bit of research yourself and move on and around!...you cannot take anything a consultant says as Gospel and NOT question it; and then continue........I am sorry but that approach is asking for increasing risk and potentially opening yourself up to more issues!

The whole industry and its stance against KC is still lagging, and places like this enable those that suffer to get a mixture of experience and a balanced view......

I would never assume that a Conultants advice from a place such as Addenbrokes is incorrect.....but as always its all about how you want to manage and limit risk....YOU of all people should be aware of what happens when KC progresses at a bi-weekly rate.......I have had that experience and many others....and beleive me its not nice..........granted that everyone with KC wont go through with this, and many instances of the condition will remain stable....but Hindsight is 20/20 ....

I am certain Kevin is intelligent enough to make a fair judgement based on his own situation rather than take anything thats written here as gospel.......as this can be gauged in his replies...and many others during the life of this board.

Sorry to drag on; but if my "gets involved too much" helps people...than in all honesty I care very little what you think

Jay

Kevin - My sincere apologies if any of my responses have misguided you, and that was not my attention at any stage......and on that note I shall not post within this thread hereon as I dont want to hijack your valid post. Again, Sorry. Feel free to PM me

[GarethB]

Kevin

Let us know how you get on as all experiences shared here are of great value.


Ali; Thanks for your response, my intention was clarification rather than start a fight.

Oops, sorry guys.

I do question everything, but I am one of those people who seek knowledge through questioning everything just like children do!

[Kevin Delaney]

Thank you all of replying to me I really apreciate it all.

I think if I go for opticians eye test in jan followed by hospital in late may hopefully that will be enough, if my left good eye does ever start to show any deterioation I will go back to hospital straight away.

again much thanks

Kevin

[Alison Fisher]

If you are anything like me Kevin you'll be paying very close attention to your left eye. I'll keep my fingers tightly crossed for you that it stays stable.

Take care, Alison

[Ali Akay]

Jay
Keep your hair on mate! All I am trying to say is you telling Kevin "Waiting for 12 months would be disastrous" may be well meant but could also be construed as alarmist and unhelpful. There are many many keratoconics as you know who never progress, and, one has to assume that his consultant has felt this to be the case for Kevin's left eye.All I am suggesting is being a bit careful not to present the worst case scenario to every patient, otherwise you may be scaring a lot of sufferers away.

[GarethB]

Ali,

You make a good point, I do not feel we mention it enough that KC can stabalise for some time. It is always hard to put such things into perspective as probably a far number who post have a more agressive form of KC.

Mine has been stabe for 2 years now.

It was lens intolerance that gave the appearence to me that KC was progressing, now with the right drops lens management isfine and it proves my KC has stabalised.

[Drew Radcliffe]

Gotta post this I as no one else had said it....

I know you have been told that you can't have any contact lenses because the KC is too advanced you didn't say if this was because the cone was too steep for normal corneal lenses or was too heavily scarred, you also mentioned problems inserting.

I am currently working with Moorfields to fit me with a Fenestrated Scleral lens this kind of lens often works long after many others don't. If you have good dexterity in your other hand you may well be able to insert this one handed - I do. This lens doesn't need to be filled with liquid before you put it in.

Drew

[Kevin Delaney]

Hi Drew

thanks for that, I think its because its too steep. I did mention to them that I suffer v bad headaches on side of eye with KC but they said KC would not cause headaches. As a prevention I'm going to wear my sunglassess more, as my reacturlights are not that good.

thanks again

Kevin