Lenses

[jayuk]

Katherine

This has "try sclerals" written all over it...if you have a number of hotspots than try a lenses that does not touch the cornea...Sclerals.........else you may need to try various combinations of soft lenses and rgp on top (piggyback)

I dont think a Rose K would help.....as the lens is very small and may do more harm than good...HOWEVER as with KC you really dont know until you try...........

J

[Kathy Hobkirk]

Hi J

I have tried piggyback lenses and they don't work - they fog up and irritate which is why my optician changed them. I did ask him about sclerals and that was when he recommended the intacs. Its a lot of money to think about though!

Kathy

[Kathy Hobkirk]

Hi John

At the minute I am on hospital appointments every 2 months but my lens care is contracted to a private opticians. He is very good and very patient!!

Kathy

[jayuk]

Katherine

Intacs is very hit and miss....and although reversible wont actually stop the KC progressing.

I was having an interesting conv with a Surgeon whom performed many in the US over the past 2 years and he claimed that in a few instances, the insertion of intacs had a devastating effect on the KC and the cornea when it was progressing....

scary stuff! but each case is different

J

[Andrew MacLean]

Katherine

Your story sounds so familiar. I was ticking off the points, frequent changes of lenses, successive efforts fail ... But just because nothing you have tried so far has worked does not mean that nothing will.

Somebody said something about Sclerals. For many people they have been wonderful.

In the end your optometrist, surgeon and you have to work out what is best. It may not be a scleral, it may not be intacs, but whatever, you have to know that the choice is yours, and that everybody in the forum is rooting for you.

All the best

Andrew

[Kathy Hobkirk]

Hi Andrew

Thanks for your reply.

Do you know what other options there are?

My consultant has mentioned a graft but not really gone into much detail, except that I have to start thinking of my options and the 2 he gave me were intacs and graft.

I've been off work now since August and been on steriod drops, I go back to the hospital in mid February and I hope they say I can come off the steriods but if I can't get any lenses that work/fit I still cant go back to work. I don't know why my optician said not sclerals cos I haven't tried them.

Any suggestions?!

Hi J

I know that intacs is hit and miss but isn't everything thats available. Have you had intacs?

Kathy

[Louise Pembroke]

Interesting Jayuk what you said about the surgeon and Intacs. When I was last at Moorfields I discussed any possible further surgical options for my somewhat redundant left eye and I was told that there's a real risk [perhaps more so after grafting] of it not working out, or it leaving scarring, being in a worse position, and the worst case, even losing the eye. If surgery doesn't improve things, then nothing is lost, but if it makes it worse it narrows the options. It's so hard to judge isn't it.

[Sweet]

Katherine

I have had loads of problems with lenses as well as with most here and went through trying loads of new RGP's. Then i tried piggy backing but find like yourself that they do tend to fog up and i have to take them out and rinse them often. I find them to be extremely comfortable though to the point that i forget about them until my vision gets foggy!

Mine are better if i use systane religiously twice a day and that i spend extra time cleaning the soft lens. I have a monthly one as was told that dailies can dry your eyes out further and cause problems. I had to have the RGP changed as not all can be used successfully as a piggy back. It needs to be one that allows enough oxygen to pass through it as it is harder to pass through two lenses.

I did try sclerals but found them too difficult to insert and that my vision was very poor with them. I would suggest you give them a go though before you consider grafting as many people here find them excellent. Surgery should really only be the last resort as there are risks and it can take a long time to see any improvement.

Am thinking of you and wishing you all the best! I would suggest trying as many lenses as you can and to make sure that you find a good lubricating drop and cleaning products that agree with you!

Best wishes, Sweet X x X

[Andrew MacLean]

Katherine

all I can really do is share my experience. I was diagnosed long before Intacs or Cross Linking C3R became available. Jayuk knows much more about these options than I do.

I was offered a graft in 1986. the surgeon was quite frank with me about the difficulties and dangers. At that time I was still able to wear RGP corneals. I decided not to have surgery.

I do not regret this decision.

I continued to be able to wear RGPs until about 2000 when my wear time was being severely limited by discomfort that tended to pain. several new lenses were tried.

In 2003 I got to the point where no lenses would fit, and even for the half hour or so that I was able to tolerate them they did not give much improvement in sight.

I was put on the list for a cornea transplant. The operation was done in December 2003, and after a longish time, the stitches were removed and I have better sight than I have ever known.

I do wear glasses.

I am expecting to have a graft into my remaining eye this spring/summer.

In your position, I'd ask my surgeon what are the options. At the same time I'd ask my contact lens specialist if there are any other options that have not been tried.

Have you, for example, ever tried Haptics (sometimes called Scleral lenses). I wore a Haptic in my left eye for a time, and it did manage to offer improvement where others, RGP's, Kerasoft, piggy back, etc had failed.

It may be that your surgeon will not offer C3R. this is an experimental procedure, and I think that others on the forum have had to go to Germany to take part in clinical trials. Obviously there would be risks in going through this sort of procedure.

Once you are satisfied that you know what the options are, you will be in a position to make an informed choice.

If your surgeon has mentioned Intacs, it may be safe to assume that he thinks that your KC has not advanced beyond the point where they are a viable option. but ask. Ask him how far your condition has advanced, and how confident he would be about your prognosis with Intacs.

All the best

Andrew

[jayuk]

Louise / Katherine

It is a hard decision to make. And yet again I really do feel that the experience and knowledge we have in the UK on this procedures is still limited. This isnt because we have incapable professionals, its more to to with red tape and new treatments being explored.

Intacs has been around for a number of years and is used as treatment practically everyday in the USA; but the uptake here has been slow. However, using Intacs for treating Astigmatism, and using it for treatming/managing KC is a different kettle of fish.

As I read more and more stories and experiences on Intacs, I am more convinced that it may not be a right solution......especially if the KC does increase whilst the Intacs are in.....(although bear in mind they can be removed).

However, C3R w\ Intacs...now that has shown some amazing results...but sadly there are only two people in the world who are actually very experienced in this. One is in Mexico, the other in USA.......

J