UK Keratoconus Self-Help and Support Association

Hi All

My first post, so i will give you some background info first:

I am 29 and was diagnosed with KC around 2 1/2 years ago and have worn RPG's since. I have good vision with these lenses, I can read the bottom line of the eye chart with both eyes.

However in the last 4 months since my last checkup, my left eye has changed quIte dramitlcally (according to the topography). I am currently living in the Czech Republic, so the gradings or levels may be different over here. I am told that there are 4 basic levels of KC (4 being the worst). My right eye is level 2 and my left eye has recently moved to level 3 (Although my vision remains unchanged). At this point my consultant recommended cross linking.

Thats that background info, today i went to see a specialist and he told me that it is too late for cross linking in my left eye as the procedure works best at levels 1 and 2, performing cross linking on a "level 3" eye may not see any beneficial results.

Thats my story in a nut shell, does anyone else have a similar experience with cross linking, or has my doctor mis informed me?

Any info would be grately appreciated.

Thanks
Simon

Simon

Welcome to the forum.

I am afraid that it sounds like your doc has got it just about right. They will not do CXL on a cornea that is less than 400 microns in thickness. Not only would there be a danger of no benefit from the procedure on thinner corneas, but there is a real danger that the procedure might cause actual harm.

What are they saying about your better eye?

Andrew

Hi Andrew

Thanks for the reply.

The doctor didn't tell me it would be dangerous to perform cross linking in my left eye, only that it may have no benefit. So I will have to check with my consultant regarding the thickness of the cornea (i don't know how to read the topography chart).However, the right eye they said can be treated with cross linking as the progression hasn't changed much since i was first diagnosed, but the decision is up to me.

So I have decided to take a look for a another clinic to get a 2nd opinion as i would like a recommendation rather than the decision left entirely up to myself.
The day ended with my consultant preparing to make another RGP for my left lens based on my latest topography.

I will reply to this thread once i get the feedback from a different clinic

Simon

Hi Simon,

Just to add into this, I saw a patient yesterday who had scarring and a cornea under 400 microns thick and who had CXL done a year ago. I fitted soft lenses around 2-3 weeks afterwards and year later, his cornea is improved in shape and scar is reduced. He still is significantly short sighted in that eye, but it certainly has regressed slightly.

This goes to show that there are no certainties with cross linking yet, so do get one or even two more opinions and review what they say.

Lynn

Hi

Thought i would update on recent news......

I have seen another consultant today and after 2 hours of examinations they strongly recommended me to have both a kera ring implant ans cross linking in my left eye. They said the cross linking is more successful after the kera ring has first been implanted. (2 - 3 months gap between procedures)

I am leaning towards having the recommended procedures done as the consultant gave a very convincing argument to do it. i will think it over for the rest of the week then most likely make an appointment sometime next week.

If anyone is interested, the price will be roughly £1500 for both the kera ring and the crosslinking at a hspital here in the Czech Republic.

Simon,

Keraring op is scheduled for 27th April with Corsslinking to follow at a later date. I will update with progress after the op.

Simon

Good luck Simon. This is very interesting to me as my son, I hope may be suitable for the same treatment on one of his eyes. All the best to you

Hi All

So I had the keraring inserted yesterday, all went smooth the explanation of the procedure took longer than the procedure it self. it took roughly 20 minutes, Surprisingly, I felt no pain at all, only a slight pressure went the doctors are marking the center of the eye. I had the tunnels created with a laser and this took maximum 30 seconds and again did not notice any pain.

I have had my first check up this morning and i am told that there is a good improvement in my eye in terms of the astigmatism etc, all tests show good improvement. My eyesight is slightly better and tends to fluctuate during the day as expected. For instance, yesterday i could read the football score on my TV with my left eye from roughly 2.5 meters, this morning its not at that level. The doctors expect daily improvement in my eye sight for the next few weeks.

I am not allowed to mix with large groups of people for the next week (to avoid infection), so I am house bound for 7 days. I have 2 sets of eye drops to use 5 times a day.

In summary i cant say if this procedure is for everyone as its too early for my eye to show much improvement. I will update on a daily basis with my findings.

Simon

So roughly 6 months after intacs and crosslinking in my left eye, here is my findings:

- The eye sight is roughly the same as it was pre op
- The numbers (astigmatism, diopters etc) is reduced, or going in the right directions. The consultants are please with this. As far as they are concerned the operation was successful

My RGP lens fitter on the other hand was no so impressed as the new shape of my cornea made it very difficult for him to fit a new lens. However he has managed to create one and i will have fitting next week. In addition the lesne in my glasses has reduced in thickness from OLD NHS style to a more slimline look which I am pleased about.

So in terms of slowing or stopping the progression of KC, this seems to be working, i can only hope that this continues. I am due to have CXL on my right eye in 2 weeks time as the KC in the cornea has recently started to progress.

In summary - The progression may be slowed, but i will never know for sure. I am still wearing RGP's in both eyes, so nothing has changed in that respect.