2008 Diary of Crosslinking (cxl/ccl) treatment!

[cclman]

Here is my diary of experience of CCL aka CXL aka Crosslinking- treatment Czech Republic, Both eyes. Told I had Keratoconus in 2005, wear glasses, age 42, drive and watch TV, or did......till treatment

Medication given by clinic: Clear-view drops, antibiotic drops, anti inflamatory drops, pain killers, Vit C pills. Sorry for any spelling errors as I type quickly.


Friday 5th Sept, day 1- CCL both eyes, Friday night bad pain little sleep- feels like my eye balls have been taken out of their sockets, used for snooker practice, rolled in sand and put back into their sockets.
6th Sept- Could not open either eyes and pain
7th Sept- Could open both eyes (in a slit like fashion) for short periods of time and less pain
8th Sept - 11th Sept Could open both eyes (inside only) foggy/smoky blurred vision, scared and very worried, will it be like this forever?
12th Sept - Temp contacts removed from both eyes, good vision eyes a little sore, is it over?
13th Sept - 14th Sept - Pain not over, bad light sensitivity, very sore eyes, no watching TV, No reading, wearing sunglasses inside and outside all sun light (even with sun glasses) very very painful
15th Sept - Sky grey outside but eyes a bit less sensitive today! still in sun glasses and can't watch TV but is this the sign of improvement?
off work almost 2 weeks.
16th Sept - Eyes Ok but grey sky outside so less bright, eyes hurt last night in bed at 9 as each day as can't watch TV or read. Dr called me to say stop the antibiotic drops they can make it worse and suggested for me to try new drops called Hylo-care or Hylo- Comod. He said his pharmacy can mix drops for me so lets see what happens?!?!
17th Sept - Did not put any antibiotic drops in last night and will not again. Very sore eyes at bed time last night, tried turning down brightness on the TV to see if helped no difference. This morning eyes (dare I say it) seem less sensitive to light but still in sun glasses. Last few days grey outside which helped but may also have offered false hope to the light problem. I will keep up this diary for the next few weeks then I may leave it a while and report back. I think it may help some who are thinking of cxl/ccl? It would be nice if a diary where done of grafting but I think that would be almost impossible because its a lot more complicated!! than ccl/cxl.
18th Sept - Eyes very sore last night even when being driven around town at night. Put eye drops in during the night (Clear -View) to help. Still wearing sunglasses. Eyes seem to get very tired towards end of the day.
19th Sept- The eye balls may be turning a corner, so to speak. Before any reader of this diary falls off his/her seat, I noticed less pain last night. I went shopping in Tesco (they are popular here in Eastern Europe and the Harrods of food) expecting my eyes to water up and pack in after 20 mins as they had done before- but they held strong. I still had my sunglasses on. I am puttting clear view (refresh) drops into my eyes every hour or more. Yesterday I slept for most of the day. They are both feeling less sore and tired today and a bit less light sensitive by about 5%. I think it has helped to do lots of sleeping to rest them. I have also noticed weight gain and if you are over 30 when you get one or both eyes done and were physically active before, you will not want to, or feel like any exercise after ccl/cxl treatment. I have not done my daily jogging for almost 2 weeks. Chocolate and all food have been my friend. Today, I am still wearing my sunglasses but I now begin to have hope thats they the old eye balls are sitting up in their sick bed and are now feeling better. They key to slow recovery maybe if you have an infection, are run down or over 40, also antibiotic drops can cause over light senitivity the very thing you don't want! if this happens tell the clinic or doctor or surgon, however it works where you are in the world. Eyes are very sensitive and ccl/cxl will upset them they dont like vit B drops, UV (UVA) or to have a layer taken off their cornea and you can't blame them!
20th Sept- Eyes a lot better today and I would say 50% less light sensitive. I don't know what he injected into both eyes (maybe vodaka!! ) but it has helped. I'm still in sunglasses and I'll see if they take TV tonight but they may throw a tantrum refuse me TV again!!!!! Fingers crosses. Back to the clinic on the 13th of Oct. Still have to decide if I Intact the right eye. Waiting for maybe more feedback and more research on my part to decide, at present I'm not in favor to do it, with the wife in the club and due in December.I'll update the old diary less frequently maybe on only a weekly or twice weekly basis till the next Doc visit then only at the end of 3 or 6 months.
24th Sept- I will get my "special mixture" in the post this week. The doctor in CZ told me his chemist will make a special mixture as drops to put in my recently crosslinked eyes to make them stronger, the clinic will post it to me as I'm in Slovakia. He said it smells of rotten eggs because it has some stuff in it (I never did listen in Chemistry at school). I am at home today without sunglasses on !!!!!!!!!! I watched TV last night but my eyes were suffereing after 30 mins and that was in sunglasses !! See what its like next week. Back to work next week, I'll report back to let you know if the sepcial mixture is "special" or just a load of rotten eggs!. TTFN
27th Sept- Eyes a lot less sensitive watching TV now and not wearning sunglasses inside anymore thats 3 weeks since the CCL. Got my eye drops today by post, the doc was right they do smell of rotten egges must be Potasium in the mixture. Use 3 times a day. I do get headaches almost everyday because my eyes have changed the old glasses I still have are no good anymore. TTFN.

[rosemary johnson]

Rotten eggs smell is usually hydrogen sulphide.....
Glad to hear the light sensitivity is fading.
Rosemary

[cclman]

Rotten eggs smell is usually hydrogen sulphide.....
Glad to hear the light sensitivity is fading.
Rosemary

Ah ah I see. What could that be for? Maybe to strengthen he corneas??? Drops in each X 3 per day. I stings a bit and smells awful!!!

I just need a new prescription for specs as mine are no longer any good but I wear them for teh headaches.

[rosemary johnson]

I have no idea what any sulphur compounds may do of benefit to the eye.
And my father died a few years ago , so I can't ask him - he used to work in plants making sulphur dioxide and related compounds.
At an outside guess, I'd hazard that it might be some sort of a preservative - that is, to prevent the bottleful from going off, rather than of direct action onthe eye.
SOunds very odd, though!
Rosemary

[Barbara Davis]

Hydrogen sulfide (the horrid approved spelling!) does actually have some functions in the body. It is a vasodliator (it dilates - expands - the blood vessels) which at a guess might be the reason it is in your "special mixture", cclman. It also has some functions in protecting the heart and in memory, and is involved in the reactions of some amino acids (the components of proteins - some of them contain sulfur).

As to the smell, I like it! I did 'A' Level Chemistry at school which meant spending many fascinating hours in a chemistry lab which has a hydrogen sulfide generator for use in the practical lessons, and I found you do become used to it. Eventually!

Good luck with your eyes.

[cclman]

Hydrogen sulfide (the horrid approved spelling!) does actually have some functions in the body. It is a vasodliator (it dilates - expands - the blood vessels) which at a guess might be the reason it is in your "special mixture", cclman. It also has some functions in protecting the heart and in memory, and is involved in the reactions of some amino acids (the components of proteins - some of them contain sulfur).

As to the smell, I like it! I did 'A' Level Chemistry at school which meant spending many fascinating hours in a chemistry lab which has a hydrogen sulfide generator for use in the practical lessons, and I found you do become used to it. Eventually!

Good luck with your eyes.

Maybe it helps the eyes in expanding the blood vessels? although I'm not sure how that helps ccl/cxl after treatmant??? My eys are still sensitive to light and I'm getting tired of wearing sunglasses outside all day!!

[Barbara Davis]

Sorry, I can't help you further on that one: it's just that the effect of increasing the blood supply seems more likely to be benefcial to the eye than protecting your heart or helping your memory would be !!

[rosemary johnson]

Errrmmmm.... the cornea itself doesn't HAVE a blood supply - unless one has been overwearing one's contact lenses so much, and restricting the supply of atmospheric oxygen to the surface so much, that your body decides to make blood vesseals into the cornea in desperation.
That's why the medics ant you to have regular checkups (you=one, I mean) - so they can check you aren't growing blood vessels where you shouldn't be.
Well, one of the reasons......
It could be that it is supposed to help with rebuilding the proteins in the layers of top surface eroded to let the rboflavin soak in.
Sounds like a question for cclman to ask at his next appointmnet, anyway.
Rosemary

[Andrew MacLean]

cclman

I guess the easiest and most direct way of finding out why your drops contain H2S is by asking your ophthalmologist. I know we would all be interested to know what he says!

Andrew

[cclman]

I see and eye doctor in the Czech Republic and he is not English, although, as I said, he speaks good English. In Eatern Europe the way of doing things and the patient to doctor relationship and communication is totally different to that of the UK. When you visit a doctor here, they will just test you and tell you you are OK or not. They will not explain what the test is, what the medication is for and they will not give you the results of any test as an explanation or as a paper copy unless you ask on bended knee. They will simply say you are negative or you are OK or take this. You even have to ask them how many times per day you should take pills or drops!! Its not easy If you not not ask and push it you wil not be told.

Sorry I though I had said I was not in the UK? Its a differnt ball game here and not easy, although the medical staff know their stuff, you are just a body and in their eyes not really worthy of an explanation, they are the doctor and you do as they say, why should you need to know? Its a bit like if you take your car to be fixed, the mechanic will not sit down with you at the table and tell you what a gear box is and how it works, he will just say you need a new one. Here the doctor will say you have KC you may need a cornea transplant, (a cold simple fact) when you ask what KC is he will look at you as if you have asked if you can sleep with his wife Often the www is more informative and I rely on it not being in the UK.

If you dont remember to ask and push for info you will be left in the dark I'll try and ask him what the drops are for. Last time when I asked questions he looked irritated and annoyed so I dont want to push him.