Been told by hospital I need a graft

[Andrew MacLean]

There was talk in Glasgow of beginning Intacs surgery, but the specialist has decided not to proceed due to disappointing results from this procedure in KC.

Be careful before agreeing to go ahead.

I simply do not understand the advice you were given about lenses. If you are still able to drive without lenses it is hard to understand why your ophthalmologist wants to default direct to surgery (of any kind).

In the end, if you find that lenses are not successful, then the option of various types of surgery remains open.

Andrew

[Rob Armstrong]

Hi Karl, I was referred to Aintree Hospitals several years ago and they fitted me with contact lenses for a few years before the graft was suggested. If your current hospital continue to flat-out refuse you contact lenses without even trying them first, then maybe you should ask to be referred to the eye department that I attend. (It's easier for you to get to at the very least).

I believe you now have the choice of up to 4 hospitals?

Although it's good to hear that new procedures such as Intacs are becoming more widely available, to refuse you the option of trying contact lenses first sounds a bit over-zealous to me (maybe someone is after some practice?). The argument that Intacts is a reversible procedure does not come across as a valid reason for not trying contact lenses first.

After all it's a hell of a lot easier to pop out your contact lenses than have Intacts removed!

Rob.

[Prue B]

The optometrist I went to sent me to an opthalmologist and a contact lens fitter when I was diagnosed. I knew it was not good when he rang my mum and asked her to come in. I was intolerant to rpgs, so I tried piggybacks and soft contact lenses and sclerals. I could not even tolerat the soft cls. My opinion was my first rpgs were so bad a fit, and they insisted I keep wearing them that my eyes had a reaction to lenses from then on.
When you consider what is involved with a graft and I tolerated that pretty well I dont believe it was me being a wimp.
It was agreed by my opthal after all avenues had been looked into that I manage as long as possible with glasses. When I started to walk in front of cars it was decided the time was now. That was about 8-9 years after diagnosis. If I had it very early in the process it would not be a benefit, a year or two earlier may have been but before that I think a graft would have not given me hugely changed results. Greater clarity and a bit better vision, but maybe not enough to justify the surgery.
Grafts are not an easy option. I had great results but it is ongoing. I spend more time at the opthal post surgery than I did before, and for me it has lead to more surgery and I always worry about my corneas. I would not go back, but I still think it should be used only when all else has failed and your life is being affected.

[Karl R]

@ Andrew

I am not able to drive and haven't done so since the beginning of this year when I realised whilst driving up the M6 I couldn't see at night, daytime was also getting to the same stage. Both my optician and the hospital have also said that I cannot drive.

I have tried wearing contacts before when my optician recommended them for my astigmatism, because of problems and pain whilst wearing them the optician said that they were unsuitable for me and back to glasses it was.

Got my new glasses yesterday based on my baseline prescription, they don't give me any more lines but makes what I can see a lot sharper.

[Andrew MacLean]

Karl

I wonder how many differnt sorts of lens your optometrist tried? Lots of people on the forum have been through the range; some find soft lenses a good solution, some 'piggy back', some 'soft perms', some Sclerals.

An Ophthalmologist in Glasgow ran a research programme where he referred people for whom it looked like surgery was indicated to the contact lens clinic. He set the challenge to find a lens that each patient could wear.

A significant proportion in Professor Kirkness' study were satisfied with the fit, comfort and visual correction provided by lenses. They did not proceed to surgery.

I know that Keratoconic eyes can be hard to fit, and when lenses become unsuitable it is good that surgery remains an option. But to default to surgery before trying the range of available lenses does seem premature.

Indeed I'd probably go further and say that the principle of 'informed consent' is being violated if people are told they have to go to surgery when there may be lenses left untried.

It may be that your optoimetrist has been through the range of lenses with you, but I have a deep fear that this is not always the case, and that some people end up having surgery for no better reason than that their optometrist lacks experience in fitting KC eyes, or of the full range of lenses available.

Oh, by the way, it seems that Intacs may be back on the agenda for Glasgow. while some results have suggested a 50% fail rate, it seems possible that with the careful selection of the eyes for which the option is recommended, this fail rate can be drastically reduced. But, and here's the rub, people with Intacs may still need to wear contact lenses.

Andrew