2008 Diary of Crosslinking (cxl/ccl) treatment!

[rosemary johnson]

Hi cclman - gla dto hear things seem to be improving.
As regards weight gain - I'm guessing the anti-inflammatory drops you've got are steroids and that could also be part of the weight problem; I'm not saying the steroids are the WHOLE reason I got to 15 stone (!!!) after my op, but they haven't been helping any of my life.
Intacts - a set of them is two semicircular bits, an upper and a lower They are implanted under the cornea with the aim of stretching the cornea out flatter so it reflracts the lght in a more regulr manner - or at least so it is a flatter more "normal" surface and easier to correct the vision with contacts/specs.
There have been lots of people who've posted here about them - some have found them great, some have had problems with odd bits of glare off the edges of them, and some have had them migrating after they've been implanted.
Have a scan down the general discussion area for tpics with INTACTS in the title - you should find several.
Rosemary

[cclman]

Hi Rosemary,

Thanks for the help. I'll have a trawl through the posts but the PC screen whiteness hurts the eyes (snow blindness) and I'm a bit lazy to look, thruth be known!!!!

I am worried about an intact or has he called it a "RING", because I don't want to feel it in my eye and I dont want it to come out the cornea, I suppose its down to luck, the doc who does it and the corea thickness!!!???

I have 3 weesk to decide about it so there is time. Knowing me my eye will not be a happy eye as they are very sensitive so Im nervous. Can I ask for a thin one to be put in and do they really last forever as the doc told me?? contact sport wil be out so Ill have to give up my boxing and judo !!! (yeh sure)

BTW my left eye has improved by -1 due to the re-shaping he did. He did a little lasik (lasering) and cxl/ccl on the left and just cxl/ccl on the right as its the worst. I wish I had not itched my eyes from a child but I had very bad allergies to dog hiar, cat hair and anything from nature!!! summers were hell, in the 70's you could only take pills and they made you sleepy or put spray up your nose.

Did you try them??? as you have a graft it may not have worked for you??? Thanks.

[Andrew MacLean]

At one time, the procedure we now know as CXL or CCL was called C3R (Corneal Collagen Crosslinking with Riboflavin). There is an atricle the gives a brief definition and history of this therapy in the "treatment options" area of the site.

http://www.keratoconus-group.org.uk/treatments/c3r.html

Andrew

[cclman]

Thanks Andrew Ill read it. My new worry now is to intact or not? So far I'm 80% no make do with a new set of specs and only 10% for one set of intacts in the right eye But Im hoping to get more feedback from others on the forum who had one or both eyes intacted.

[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.

[rosemary johnson]

Hi again.
Glad to hear the eyes are improving.
Yes, I know just what you mean about the glare from white-background computer screens! - that's why I'm still using old-fashioned "green screen" kit ith white letters and balck background.
Have you tried changing to the white-on-black colour scheme on your computer? - it might be better with less glare as less total emitted light.
If you're on windoze - or rougly the same sort of windoze as my boss has - then go to control panel, then the green person-in-wheelchair symbol, then I think it's the second line, then I think the top check box, and then OK. But once you get the accessibility options from the w/chair symbol it is pretty self-explanatory. Well, I found how to do it.
One warning - it's best to do this from the first screen as soon as you switch on and before opening applications, and sometimes things go a bit funny if you switch on the white-on-black in the middle of some applications - as I discovred when screwing up boss's computer for her somehow!
You spoke about the horrors of summer and animal allergies, and the antihistamines that made one sleepy, then asked if I'd tried them. Did you mean the antihistamines or the intacs????!!!
EIther way:
1. yup, know about the perils of summers - I get hay fever, and am now allergic to cats and horses; also air pollution, ohotochecimal smog, chemical solvents, etc etc. Never tried antihistamines before this summer - mostly the allergens set off my asthma, so control it with asthma inhalers and prefer runny nose to dried out eyes with the contact lenses.
HOwever, as I now have problems with the asthma inhalers - part of disastrous op is I@m now hypersensitised to normal inhalers and get hallucinations after 2 puffs of the normal preventer. So the asthma clinic nurse recommended antihistamines as well as new inhalers. They don't seem to dry the eyes like I'm told the old ones do, and she said they weren't so sleep-inducing these days. The first sort I think was still drpwsy but had a stimulant to counteract it - it felt like being utterly exhausted and trying to keep going on loadsa strong black coffee, if yo know what I mean, and couldn't sleep at night. The second set just left me feeling run down and, if anything, "depressed" so I stopped those PDQ. Not sure they were making any difference to the allergies, etiher - though I know some people for whom they're very effective.
2. Intacs - nope, my eyes were too far gone by the time intacs came along.
If they'd been invented 30 years ago, who knows?!
Rosemary

[cclman]

As for the screen suggestion posted in another section. It is possible to change the colour and background and font size on PHB forum I know because I had one. I think a white screen is a bad choice for a forum for eye sight probs but thas only my opinion. I love all animals but just wash my hands always after touching them nowadays.... but on occation I forget, accidently brush my eye with a hair and it itched and trippled in size due to the allergy? I am now VERY careful!!! I am convinced these allergies caused the Keratoconus and maybe the eye profs could or have already realized that? but you will find many people who have Keratoconus but don't itch their eyes so my theory may be blown away?

[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.
22nd Sept- Ill post this last entry and report back after next doctor visit in 3 weeks. Decided today NOT to have one eye done with an intact at this time. I'll "suck it and see" (not literally ) till next year. Cant' take the risk or spare the time or money now. I could watch TV last night for 2 hours then they gave in and watered up and became sore, so its getting better SLOWLY.

Post ccl/cxl opinion: If you do have it done think about how your eyes or eye will be after the treatmant. You may just have one eye done and this maybe better. You may have bad light sensitivity or you could be fine. Expect the worst but hope for the best. Allow 2 to 4 weeks of no work and being stuck at home for at least 3 weeks. Also, if you are self employed- no work means no pay! can you afford it? if you are employed I would say take it as sick leave or if you think that may cause problems with old HR, speak to a friend who works in HR if you know someone or talk to your HR but only if they are nice and can be fair and trusted, No offense to HR people but they can be crafty foxes at times. For me, the last two weeks have been horrible and I did not expect so much agro and upset. It may be my fault, but I had no info on what would happen after the treatment but I did know what the treatment was and what was invloved, only bacuese I looked on the web to learn about it. If you have it good luck- Find a good clinic or good NHS hospital, if you dont feel the trust walk away and go elsewhere to do it. TTFN for now. cclman.

[pepepepe]

CCLman, are you taking anything for your allergies ? As for me there was times as a kid where my hands used to swell up double the size. They found I was allergic to dust and dust mites.

I don't have a problem with his now, but did have a cold which lasted forever it seemed - on investigation it was not a cold the Dr said, it did start as a cold but the coughing which carried on for months was due to allergies - I was given antihistamine tablets and that cleared it all up very quickly.

Please do write a way, your posts are good to read !

[cclman]

I got the feeling I was boring people as not many seem to reply on my bit Maybe I will ?