2008 Diary of Crosslinking (cxl/ccl) treatment!

[Barbara Davis]

Hi, Rosemary,
Yes, I appreciate the cornea doesn't have a blood supply; you have explained that is why tissue typing is not necessary for a cornea transplant. Some parts of the rest of the eye do have a blood supply, however: for example we know there are muscles which adjust the shape of the lens, and muscles have a blood supply. In exactly the same way that the pressure inside the eye does not stem directly from the cornea yet we know that it can be important to keep it at a healthy level after a transplant, it could well be important to keep the rest of the eye as healthy as possible during other treatments for KC - and that could include the blood supply to the eye.

Purely speculating, I can think of two other possible ways in which hydrogen sulfide might be useful. Firstly, although strictly speaking a vasodilator refers to blood vessels, I'm wondering whether it has a similar effect on other "vessels" - such as the drainage tubes which regulate fluid pressure in the eye. It might therefore help control IOP. Secondly, the treatment in this case is cross-linking. Disulfide bonds - between sulfur molecules in different amino acids - are an important method of crosslinking within proteins and so may be useful in strengthening the cornea. Bathing the cornea with dilute hydrogen sulfide may well help optimise this sort of bonding. But as I say I'm speculating; it would be interesting to know.

[cclman]

Hi, Rosemary,
Yes, I appreciate the cornea doesn't have a blood supply; you have explained that is why tissue typing is not necessary for a cornea transplant. Some parts of the rest of the eye do have a blood supply, however: for example we know there are muscles which adjust the shape of the lens, and muscles have a blood supply. In exactly the same way that the pressure inside the eye does not stem directly from the cornea yet we know that it can be important to keep it at a healthy level after a transplant, it could well be important to keep the rest of the eye as healthy as possible during other treatments for KC - and that could include the blood supply to the eye.

Purely speculating, I can think of two other possible ways in which hydrogen sulfide might be useful. Firstly, although strictly speaking a vasodilator refers to blood vessels, I'm wondering whether it has a similar effect on other "vessels" - such as the drainage tubes which regulate fluid pressure in the eye. It might therefore help control IOP. Secondly, the treatment in this case is cross-linking. Disulfide bonds - between sulfur molecules in different amino acids - are an important method of crosslinking within proteins and so may be useful in strengthening the cornea. Bathing the cornea with dilute hydrogen sulfide may well help optimise this sort of bonding. But as I say I'm speculating; it would be interesting to know.

Ill ask the doc and he may expalin and I'll let you know. It does sting and stink when you put it in.

[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
30th Sept- Taking smelly egg drops for a few days now and eyes seem stronger. I can now watch TV for about 2 hours but still wear sunglasses outside when its bright. I need new specs as my current ones are odd and not as they were before. I hope my eyes are not worse than before I am still not driving my car which is a pain. Any questions on ccl/cxl you can always email me privatly at cowpatsrus@gmail.com
TTFN

[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
30th Sept- Taking smelly egg drops for a few days now and eyes seem stronger. I can now watch TV for about 2 hours but still wear sunglasses outside when its bright. I need new specs as my current ones are odd and not as they were before. I hope my eyes are not worse than before I am still not driving my car which is a pain. Any questions on ccl/cxl you can always email me privatly at cowpatsrus@gmail.com
TTFN
14th October- Went back for eye tests yesterday after CCL/CXL on the 5th of Sept. The bad eye is the same and the left eye a bit better. I have NO light sensitivity but the eyes get tired at about 8 at night. I am getting new glasses in a week. I have nothing more to say but may report back in 2 or 3 months if you are interested in the final results. I am not sure if the CCL/CXL was worth it !? or one big waste of time???

[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
30th Sept- Taking smelly egg drops for a few days now and eyes seem stronger. I can now watch TV for about 2 hours but still wear sunglasses outside when its bright. I need new specs as my current ones are odd and not as they were before. I hope my eyes are not worse than before I am still not driving my car which is a pain. Any questions on ccl/cxl you can always email me privatly at cowpatsrus@gmail.com
TTFN
14th October- Went back for eye tests yesterday after CCL/CXL on the 5th of Sept. The bad eye is the same and the left eye a bit better. I have NO light sensitivity but the eyes get tired at about 8 at night. I am getting new glasses in a week. I have nothing more to say but may report back in 2 or 3 months if you are interested in the final results. I am not sure if the CCL/CXL was worth it !? or one big waste of time???
20th Sept - Have new glasses now.... very dissapointed vision seems worse than the old glasses before the ccl/cxl!!! doc says may need time to settle and I may need a ring in the bad right eye this was suspected and I was offered it before- but wanted to wait at least 4 or 5 months. Go back in Feb 08.

[Barbara Davis]

Thanks for the update cclman, and I'm sorry the news isn't better. Fingers crossed that things improve with time.

[cclman]

Sorry typo not Sept OCT
20th OCT - Have new glasses now.... very dissapointed vision seems worse than the old glasses before the ccl/cxl!!! doc says may need time to settle and I may need a ring in the bad right eye this was suspected and I was offered it before- but wanted to wait at least 4 or 5 months. Go back in Feb 08

I am dissapointed , I did not expect 20/20 vision after ccl/cxl but I did not exepect weaker eyes.... although I'm told mapping shows an improvement in the left eye. I had some Lasik in the left eye but only ccl/cxl in the right and left eyes. Maybe I can have Lasik laser re-shaping and/or a ring in the right in Feb?? See what he says then.

[pepepepe]

cclman, any word on the eye drops they sent you ? in what it was ? and did your Dr say anything about haze ?

I am surprised you was prescribed glasses this early

I hope you continued good progress

Pepe

[cclman]

cclman, any word on the eye drops they sent you ? in what it was ? and did your Dr say anything about haze ?

I am surprised you was prescribed glasses this early

I hope you continued good progress

Pepe

I had glasses before so it was just a change of prescription. The eye drops were to strengthen the corneas and I only had one small bottle. The haze was only after the ccl/cxl and went after 7 days. My eye doctor wants to put a ring on my worst eye, perhaps in Feb 08, I will decide then.

[pepepepe]

cclman, did you ask what was in the drops ? i know tha was asked about in posts before and did your Dr say about the time it wil take for the recovery to finish - its about six months from what I read and was told when I asked my ophthalmologist