Cross Linking - Just another experience

[rsnr]

I had my Cross linking procedure last Tuesday and decided to share my experience with people who are considering the intervention, so as to prepare them for what to expect. I am a 24 year old male, with a moderate Keratoconus in my right eye - the one that was treated. I had the procedure in a private clinic in Bulgaria paying 800 leva (around 350 pounds) including several post-op meetings with the doctor and medications. I had the condition discovered last year and the vision in my right eye is significantly deteriorated but corrected only with glasses so far. My left eye is still in good shape and does most of the work.

The procedure itself is not as uncomfortable as I expected. The doctor gave me a sedative before we started so I feel more relaxed in the process. After that I sat on the "dentist chair" and had the anesthetic drops in my right eye and had the eye retractor placed. Next the doctor placed my head under some kind of microscope and removed the epithelium of my cornea. This was the most uncomfortable bit, although it was not painful. After the epithelium was removed, the doctor started putting the riboflavin drops in my eye ever two minutes for half an hour. Every now and then she would put some of the anesthetic drops as well. After the first half-hour, she started the UV light and continued putting riboflavin drops for another half-hour, this time with the lamp on. There was a bizarre feeling of dryness in the eye but nothing too uncomfortable. After one hour in total the whole procedure was done and the doctor placed a protective soft lens on my eye that I had to wear for one week. Probably because of the sedative and the anesthetic drops I was feeling very happy and confident that all the pain is gone. And it really was for a couple of hours.

I went home right after the procedure with a set of three different eye drops that I had to start putting in my eye on the next day. Two hours after the procedure the real pain came. The way I can describe it is as having some of those terrible drops they use to dilate your pupils for an eye exam, except that this time the pain doesn't go away. I took pain killers several times, and didn't get much sleep during the night. On the next day the doctor saw me and said that the cornea is recovering well and there are no complications. Starting that morning, I had to put the three eye-drops that they gave me on every hour. During the day the pain started going away and I was feeling slightly better. I spent several hours outside, wearing sunglasses which was probably a mistake. At nighttime my eye was in pain again, and this time i probably managed to sleep for three hours. On the second day after the procedure I stayed home, had some painkillers and the pain as it was in the previous days was gone. The only feeling I had was the irritation of the eye with the lens, which felt like a foreign object in my eye and was mildly uncomfortable.

The third and fourth day (friday and saturday) were much better for me. I didnt wear sunglasses at home, just outside. Pain was gone and irritation from the lens was less acute. I went outside for a walk again with my right eye slightly light-sensitive even with strong sunglasses, but nothing unbearable. I'm putting the eye-drops only four times per day now and I can say it's healing.

Today is Sunday and I am watching TV at home with the drapes open and no sunglasses and don't have any light sensitivity or pain. I'm waiting for the Grand-Prix to start and cannot believe that Hamilton is such a sucker this year. Huge disappointment.

Concerning my vision, it's very foggy and blurry in my right eye. I have no idea whether this is because of the lens or because the cornea needs longer to heal. Anyways I'm not worried as I still have my left-eye doing the work while the right one is healing. It's probably going to be more uncomfortable when I do my left eye, as the right one is less reliable.

I'm seeing my doctor next Tuesday to have the lens removed. I don't really know what to expect for the recovery but I'm happy because the procedure is out of the way and hopefully the condition wont deteriorate. I will add further comments concerning the recovery of my vision quality and the correction choices I've made. If you have any questions about the procedure or the condition, please do not hesitate to PM me.

[Andrew MacLean]

Hey rsnr, thanks for that very positive post. Please keep us posted on your progress.

All the best

Andrew

[beckypops]

thankyou for your extremely useful contribution, I'm new to the site although i've dipped in and out for years. I've just had an appointment this week which has left cross linking as a viable option for me and i found your info really helpful, please keep us posted!
wishing you the speediest of recoveries

[Andrew MacLean]

beckypops

Welcome to the forum!

Andrew

[jeci]

Thanks for sharing this, it is a lot of help.

I am preparing to fly to London this evening and have appointment fr tomorrow at 14:00 hrs for CXL in my left eye!

I will let you know as I go along my experience!

[Andrew MacLean]

jeci

Welcome to the forum, and all the best with your procedure.

Andrew

[jeci]

Thanks for the warm welcome! I just stumbled on this forum and want to congratulate you on a great, very helpful site!

I am leaving Malta in an hour time to London Luton, will do the op tomorrow at 14.00hrs.


My main concern being a very enthusiastic boater/swimmer is how long I wait before am I back in the sea! I must say its not exactly the best timing to do this in mid summer!

I will fly back in a week's time and hopefully by the following weekend I will in the wet again!

[Andrew MacLean]

Every good wish with that! do allow yourself to be guided by the people at the clinic.

Andrew

[rsnr]

Hi everyone. I went to the clinic I had the CCL procedure in June last week to hear some good news. Apparently, 1 month post-op, the vision in my right eye is almost 100 % (with correction - glasses). Before, i Had 30% with no correction and 50% with correction. Things seem to be going quite well. I myself cannot see a huge difference but I trust the doctors. Also, the doctor said that my current glasses will not give me the best vision possible in the crosslinked eye, but she recommended not to make new ones as the cornea will be changing for 6 months after the procedure. Annoying halos are still there but seem to be smaller. Well, next visit in Bulgaria is in December, but I am going to see an NHS specialist on the 31 st of July as it was scheduled months ago and hear their opinion as well.

Regards,

Martin

[Lisa H]

Hi All

Good luck to rsnr, jeci & beckypops with your CXL treatments. I'm looking forward to hearing about your experiences.

This may be a dumb question (I'm not particularly knowledgeable about all the possible KC treatments) but have you all elected to have this procedure done yourselves or has it been recommended by an eye specialist? I was diagnosed when my KC was still in its early stages (in 1996 - just before CXL was developed) and I would guess that my KC is moderate now but no one has ever mentioned CXL to me. I note that NICE are currently doing a consultation on cross-linking; does that mean that docs won't officially condone its use until NICE give it the ok or is just that the NHS don't offer the treatment yet?

Many thanks

Lis x