Advice please "no more scleral lenses"

[ianhull]

Hi everyone, 1st post, had KC since 12 years old, now 32.

I first tried some mini lenses, unsure of what they were, i couldnt cope with the irritation, i then got Scleral lenses which i could see great with but i could not put them in properly all the time and decided to just make do without lenses.

i have just made do for around 5/6 years now and im getting concerned as my vision in both eyes is getting worse.

i am worried that i will have to wear the lenses again but i am not comfortable with this and before i bother the doctor at the hospital again am wondering if anyone could give me any advice on possible options.

Thanks in advance

[Andrew MacLean]

Hello Ian and welcome to the forum.

Each type of lens will be suitable for some people but not for others, and I think that you may well find that there have been some significant developments in contact lens design and contact lens materials since you began your KC journey.

There are now soft lenses that have been proven to be effective in some cases, so do not lose heart. If they do say that you need to wear lenses again they have a far wider armoury of lenses to try.

Every good wish

Andrew

[ianhull]

Thanks Andrew,

I appreciate your help.

The Scleral lenses allow me to see perfectly 20/20 however, having to put foriegn objects into my eyes makes me squeamish.
Even though I know I can see with them in I would still rather avoid using them as I know they will be uncomfortable for a while.

Even when I do get them in properly, I do not like to go anywhere as I see too much (sounds strange) but I see the detail on peoples faces and I sometimes stare at people in exploring the details of thier faces etc.
I have stood in the street just staring at things in detail.

It scares me to put my lenses in because of the comfort issue and sometimes because of the details.

I am hoping for some other solution which would help me see more and that I cannot reverse, like take my lenses out.

Gas anyone on here ever had an operation ffor KC?

if so, what kind, and results did you get?

Thanks in advance.

[Andrew MacLean]

Again the surgical options that are available (depending on clinical indicators) for people with Keratoconus have grown in recent years.

INTACS, where they insert little semi-circles of clear plastic into the cornea, is now available in major centres on the NHS. The aim of this procedure is to produce a more regular shape for to the cornea.

Corneal Collagen Crosslinking with Riboflavin (sometimes called C3R or CXL) is widely available but not yet on the NHS. The aim here is to thicken and stiffen the cornea so that it stabilizes.

Both of these procedures can leave you still needing contact lenses.

I have had two more traditional surgical interventions. I had a PK Cornea Transplant into my right eye and a DALK transplant into my left eye. I now have very good vision wearing specs with optical value on my right eye and a clear glass lens over my left. I wear an RGP contact lens on my left eye.

Every good wish

Andrew

[John Smith]

Hi Ian,

Like Andrew, I've had a transplant of both corneas. Although it may sound like a magic bullet, please be aware that it isn't a panacea.

The idea of a graft/transplant is to make your vision easier to correct. It's not designed to cure your KC. Most people (proabably 60%+) will need to wear contact lenses of some sort post-graft, and most of the remainder will need to wear glasses. Only a tiny minority (5-10%?) will be able to see well with no further visual correction.

That said, it is possible to have refractive surgery (laser eye treatment) post-graft in some cases, and this may help; but there is no going back after a graft.

If you are concerned about the comfort of wearing lenses, some of the more modern soft lenses for KC are VERY comfortable!

[Lynn White]

Hi Ian,

You CAN get "perfect vision" with some surgical options if they manage to get the corneal surface regular because you can have lenses implanted in your eye that correct your residual prescription. However......

You are experiencing the well known effects of "too much detail" when you have your blurred vision corrected with sclerals. At first its too much for the brain to deal with although you can adapt, there have been recorded cases of blind people having sight restored through grafting who have become profoundly depressed with their new, clear vision. So I understand what you mean totally and I strongly advise against forcing yourself to come to terms with it through a not easily reversible surgical procedure.

One way of getting round this is to have lenses that only partially correct your sight. I understand you don't like the idea of anything in your eye but, as Andrew says, soft lenses can be fitted and these are the least intrusive of all the lens types. You can be in total control of how much vision you have corrected if you discuss this with your fitter and you can gradually increase the correction as you get used to it.. but only if you want to. This way you can find the level of vision you are comfortable with and stay with it. At this point, if you want surgery, you know how far you want to go with it.

Lynn