Taken the plunge...

[Lizb]

Well i have taken the plunge and am booked in for the CXL procedure on 14 October for my left eye, with a view to having intacs put in in 6 months time. Right eye the doc wants to monitor before suggesting any treatment for it.

I had a consultation with a private clinic in london yesterday afternoon (long day from preston to london and back again in a day). A bit nervous about the procedure but have done the research (spent best part of 9 months considering the options and risks) and want the procedure done. I am not having any luck with contact lenses, due to discomfort and dry red sore eyes.
I would like the CXL done on the right eye to stop the progression of the KC but due to the very early stages of the KC i can understand the docs reluctance to do anything just yet until he has monitored the eye.

I could have had the procedure done on wed 2 sept but didnt have anyone to come down with me (hubby on training course and dad busy looking after my mum), and driving me back to Preston from East Grinstead the following day (dont mind the train down but dont think it would be a sensible idea to come back on the train the following day ).

My doctor doesnt believe in doing the CXL and intacts surgery together as he sees patients with changes in their eye upto 6 months after CXL and doesnt like working with moving goal posts (my kind of guy) for intacs. The only difference in the procedure to what i have read up is that he punctures (best description for me) the epilithium (sp?) several times rather than removing it totally to minimise the chance of infection. He has said that it will be painful, but this shuoldnt be as painful as the epi off procedure.

Will be happy to keep people updated with the procedure when i have it done, any questions give me a shout. Any advice please submit it here. I know what i have read online but always happy to hear from others who have the procedures done.

[Andrew MacLean]

Liz

all the best. Let us know how it goes.

Andrew

[Lizb]

Some queries after the CXL procedure, will be emailing the clinic with these questions but if anyone on here has any experience then that would be great. Will add to the post with more questions as i think of them and save them all up prior to sending an email to the clinic

1. How long does the pain last for (consultant has told me it will be painful, i just forgot to ask for how long)?
1a. What have people found to be the best pain relief?
2. Will i get provided with an eye shield to stop me rubbing my eyes in my sleep, or am i better off getting one beforehand?
3. Will the other eye be covered up during the procedure - dont fancy being able to seen what they are doing?
4. Hubby will be driving us down on the day of the op, we are staying over for at least the wednesday night for the follow up appointment and we were wondering if we should stay for the thursday night and then travel back? Some of this i guess be dependant on the pain levels but am i likely to be in a fit state for a 4-5hours journey back from East Grinstead to Preston?
5. How light sensitive i am likely to be following the procedure, and for how long? I dont suffer too badly most of the time unless i am suffering with really dry eyes

[kps]

2. I mentioned that I was worried that I might dig my head into a pillow or somthing while I was sleeping... they gave me a see-through plastic eye cover which I could tape to my head using provided tape... I looked quite interesting with it on

3. They didn't cover up my other eye and I could see what they were doing through the eye they were operating on.

The worst part of seeing them working on your eye is at the beginning and probably lasts about 1 to 2 minutes (the epithelium removal, which is not painful by the way, it just feels a little strange). Most of the time you stare at a spot of light and watch yellow drops fall onto your eye - not scary.

EDIT: OK I acctually read your first post fully now... Interesting that your doctor says that messing with the epithelium is painfull... It was fine for me.

I've got a terrible memory time-wize so I couldn't really answer the time-based questions!

[Andrew MacLean]

kps

Welcome to the forum! And thank you for a most helpful and supportive post.

Andrew

[rsnr]

hi Lizb. First of all, you really should not worry about the procedure, as it is not as bad as you think (I was quite worried beforehand too but turned out to be OK)

1. There is no pain during the procedure as the doctor puts anesthetic eye drops in the beginning and every now and then during the procedure as well. Probably one or two hours after, the anesthetic will wear off and you will start feeling a mild pain, which is not as annoying as a toothache i can assure you. It is slightly uncomfortable, but you know you're doing it for a good reason. On the second day pain will be significantly lower, and on the third day it will go away entirely. Concerning pain relief, I've read around the forum that doctors give you some eye drops to use as a last resort, although they can slow down the healing process. Back in Bulgaria, they didn't give me these. They gave me 2 antibiotics and artificial tear eye drops. Pile up on ibuprofen just to make yourself feel better

2. I got provided with the shield, so probably you will too as it is common practice.

3. My other eye was not covered either, but it was actually quite fun. And also, you will be able to see what they're doing with the eye that is treated as well, so don't worry. Before the procedure, they gave me half a pill (no idea what) to calm my nerves and it really helped. Also, during the procedure, the doctor was very nice and talky, and we were discussing marriage problems (hers not mine - i'm not married) and interesting books. They really try to make the procedure as comfortable as possible, and walk you through it all the time.

4. Staying over is really a personal choice. My procedure finished at 10 am, and they don't have sleeping facilities, but I would not have used them either. I went home and went back next day 7 am for a check up, everything was OK, and then I saw the doctor in a week, to remove the protective lens and then two weeks after that and then a month.

5. Light sensitivity is a problem for the first few days, as the treated eye cannot handle the daylight well and it's difficult keeping only one eye open. (so no reading, tv or anything like that for a few days) After that, the light sensitivity decreases, and you can even go out for walks with sunglasses. (I went on a walk on the following day after the procedure, but regretted it during the night, as my eye was very sore, probably from the dust et cetera)

Generally, be relaxed as it is not bad at all, especially if you know your doctor and you have a good relationship, as the conversation during the procedure really takes the pressure off.