Crosslinking on a healthy eye

[GDoTT]

Hello!
I was diagnosed with KC on my right eye on the 30th of July this year. The doctor recommended crosslinking and i went for it and on the 1st of August i did the procedure. Now the recovery seems to be going well, the doctor told me everything is ok, the procedure is successful and i asked should i do it on my other eye. He saw the topography of my left eye and said that is is healthy. There is no keratoconus in it as of this point and we shouldnt do the procedure there. I agree with him, but there is this doubt in me. I have read that the disease usually comes in one eye and later in another and after someone is 40, it gets stable, because the cornea stiffens. But i am 23, and i wonder should i do the procedure on the healthy eye too, so as to prevent it from happening in the future. The doctor said that i should go to monitor the situation every 6 months, which seems ok and reliable, but i was wondering what other people who have had this disease might think, because i am kinda a hypohondriac and i always think that i may do more for prevention and health.

Regards,
Simeon

[GDoTT]

Also, how am i supposed to understand if my KC is mild, average, or severe? The doctor told me that the best method is to have a hard lens on the eye, but i am wondering if my vision can be corrected by glasses as well. And are there benefits from wearing hard contact lenses over glasses? I think i read somewhere that they may help stopping the progression of the disease, but i am not sure if this is true.

[Lia Williams]

Hi Simeon,

But i am 23, and i wonder should i do the procedure on the healthy eye too, so as to prevent it from happening in the future. The doctor said that i should go to monitor the situation every 6 months,

From what I've read, and the presentations I've been to, this seems to be fairly standard.

Don't forget that with any procedure there is always a risk, albeit it very small, so although you may well get keratoconus in your other eye it could be very mild and show little progression so there may never be any benefit in doing the procedure. That said don't forget to go for your check ups.

Also, how am i supposed to understand if my KC is mild, average, or severe?

I'm not sure what the official definitions are but your KC is probably mild if you can see well with glasses. There are some people who have mild keratoconus which is only discovered when they want to have laser surgery to correct their short sightedness and are not allowed to do so (keratoconus is a contraindication). Severe keratoconus is probably if you need highly specialised contact lenses (such as scleral lenses) or a graft. In some cases it is not possible to fully correct the eyesight and a few people are registered as sight impaired or severely sight impaired.

Average is somewhere in between where specialised contact lenses (eg RGPs) are needed to achieve good vision.

And are there benefits from wearing hard contact lenses over glasses?

Although if you only have mild KC it may be possible to correct it with glasses, but with more advanced keratoconus, glasses don't correct the irregular astigmatism which contact lenses can do. In my case, unaided, I can't see anything clearly which is more than three inches away from my eyes. With glasses I get some vision but with contact lenses I can see perfectly.

i read somewhere that they may help stopping the progression of the disease,

No this is not true.

Lia

[GDoTT]

Thank you, Lia. Your reply was very informative. I guess i have average keratoconus, because i am kinda like you, i see blurry with my right eye everything that is more than a couple inches away, so it seems that the doctor's advice to have RGP is the best for me. In a month and a half when i am supposed to go to the ophthalmologist that is very adept in contact lenses i will ask to see how i will see with glasses, but from what u say i think that i will need RGP. I hope they do a good fit, so that i can have good vision in that eye again, because i dont want to over strain my good eye. It needs its rest from time to time. After the procedure there are some days when it feels tired, so i am hoping for a good lens outcome. For now i will not do CXL on the second eye for at least an year to see how it goes, but i am tempted for next summer, because i may have to go to China for 2 years and if the shit hits the fan there, it will be very unpleasant, but lets see how it goes. Time will tell. Again, thank you for the very informative reply, it really helped me have another opinion on the matter.

[GDoTT]

Actually, today i was watching some cycling on the TV(40“) and i managed to read the logo of the TV - eurosport and some of the words that were on the TV, so really no idea how my keratoconus is. Can you do that Lia? I am not talking about the small font, but the normal/slightly bigger one. Thanks in advance.

[GDoTT]

How do you guys cope with the mental stress? Since i was diagnosed and i started reading of the bad outcomes i have had constant breakdowns and even though i try to concentrate on the positives that my KC is avarage at best and that i have had cross linking, which is successful, when i dont have stuff to do my mind wonders what may happen in the future and how to prevent it, but the fact that there is no cure for the condition is really depressing. I will always have that shit and even though right now it doesnt affect my life that much, in the future there is a possibility that it could and that scares the shit out of me. My girlfriend is my only comfort, but i cant be with her all the time. Generally when i am busy i dont depress myself that much and that helps, but i am a student and currently i am on my summer vacation, so i definately have 2 more weeks of spare time and i just want to find something that will help me, so if any of you have found interesting stuff to do or ways to cope with the mental stress of the disease, please share it.

[Lia Williams]

i managed to read the logo of the TV - eurosport and some of the words that were on the TV, so really no idea how my keratoconus is. Can you do that Lia?

Unaided, unless I was only a few inches away from the television, I wouldn’t even be able to tell it was a football game. With my glasses on I could probably read the text although, because of the residual ghosting, which the glasses don’t correct, I can easily confuse numbers. With my contact lenses I have no problem.

Since i was diagnosed and i started reading of the bad outcomes i have had constant breakdowns and even though i try to concentrate on the positives that my KC is avarage at best and that i have had cross linking, which is successful, when i dont have stuff to do my mind wonders what may happen in the future and how to prevent it, but the fact that there is no cure for the condition is really depressing.

Do look at the positives. Firstly your keratoconus has been diagnosed so you know what the problem is. For many people it can take some time before they have a diagnosis - they keep going back to the optician's complaining that their latest glasses are no longer working. This is usually the first indication that someone has keratoconus. Secondly you've been able to have cross linking, which is a relatively recent development, which has hopefully stabilised your right eye and your other eye is being monitored in case it has a problem. And lastly you are looking to get contact lenses and these should improve your vision. Once you have got your contact lenses don't forget to go for your check ups.

You can find out more about keratoconus by watching the videos from our last conference. These can be found here:

https://www.keratoconus-group.org.uk/in ... -videos-2/

Lia

[DavidGable]

I would just like to reiterate what Lia said and concentrate on the positives. If you look at our committee (https://www.keratoconus-group.org.uk/in ... committee/) each member has experienced one or more of the problems you fear, yet all have had successful careers despite the difficulties. The video's of our Birmingham conference will be published in a few weeks and all the talks were centred around the theme of a better patient experience. They should be well worth watching.

David

[CrippsCorner]

Actually, today i was watching some cycling on the TV(40“) and i managed to read the logo of the TV - eurosport and some of the words that were on the TV, so really no idea how my keratoconus is. Can you do that Lia? I am not talking about the small font, but the normal/slightly bigger one. Thanks in advance.

Hard to say what progression you're at. One of the most frustrating things about KC is that standard 'tests' like that don't always make sense. I can read what I'm typing here fine with my left eye (unaided) but the actual vision is terrible... but this is due to ghosting which regular people don't experience!

Regarding the original question, well I'm one of the 3% where CXL went wrong. I was actually in the same situation as you. I had CXL performed on my worse eye and it went well! My better eye really wasn't all that bad, but because CXL went so well previously I thought sod it I'll do it and then I won't have to keep worrying it's going to get worse. But, alas CXL made my vision much worse and now it'll never recover (my only option is a transplant) so I would think long and hard and indeed just watch its progression.