UK Keratoconus Self-Help and Support Association

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.



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
15the 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.

Notes: Told by some people light sensitivity can last 4 weeks, 6 weeks or months.

.........Next return visit to DR Saturday the 20th of Sept!!!!!

Hi cclman!
SOrry to hear you've been having a raw deal with pain and hypersensitivity.
I'm really surprised the clinic where you ahd the treatment didn't talk thorugh with you the likely outcomes in terms of how much pain , light sensitivity, etc you could expect and how long they would take to wear off and how long it would be for the vision to return to its future steady state.
Surely, they should have forewarned you about what to expect?!
From what I've gathered - as CCL/CXL/C3R came along too alte to be on the agenda for me - light sensitivity is to be expected, as is it taking some time for the vision to stabilise, and 10 days would be too soon to expect to be through that process.
A lot of peple do have one eye done at a time, though - which must make it less of a hassle, as there's the other eye to do the coping.
I can understand why you wanted to go for both eyes together on an expedition to the Cxech Republic, though.
Hope all is AOK again soon.
Rosemary

Hi Rosemary,

You made some good points. No I was not talked through it by the Doc (they are Doctors in eastern Europe who then choose a specialty) , I was just told to do both eyes and then I was on the slab and being lasered in the eyes, then I had the UV lamp in both eyes with a lot of vit B drops for 30 mins each ete. After that I was sent home with pills, drops and dark sun glasses and told to return in two weeks. I will only know if CCL/CXL was a blessing or a curse later, for now I just watch the clock (close up, no specs on) and tick the days off to see improvement. My vision is not blurred but the light thing is the main pain. I talk to the cat and myself each day and post on this forum! its a kind of therapy but may also help others thinking of doing CCL/CXL


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.


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.
17th 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.


Notes: Told by some people light sensitivity can last 4 weeks, 6 weeks or months.

.........Next return visit to DR Saturday the 20th of Sept!!!!!

All the best on September 20

Andrew

Thanks. I may seem like Mr doom and gloom but I expect he will say it takes time! and maybe he is right? I will see (or hope to see- if you pardon the pun!) a sense of humor is important

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.


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 siad his pharmacy can mix drops for me so lets see what happens?!?!


Notes: Told by some people light sensitivity can last 4 weeks, 6 weeks or months.

.........Next return visit to DR Saturday the 20th of Sept!!!!!

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.


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.



Notes: Told by some people light sensitivity can last 4 weeks, 6 weeks or months. Be careful when washing. Never get soap or shampoo into your eyes or eyes post ccl/cxl op, (pat face around eyes gently with a towel when drying) this may seem obvious! but I thought I'd mention it. If you are worried keep trying to contact the Dr/surgon that did the ccl/cxl to get answers. Try and get others experience before you do ccl/cxl and if you dont feel the clinic or doctor is right (you don't trust them), just walk away. Your instinct would probably be right.

.........Next return visit to DR Saturday the 20th of Sept!!!!!

Be careful about deciding what medications to use and what not.

After my eye surgery I had to use Chloramphenicol eye drops (antibiotics) for several months. After any kind of surgery on your eye, there is an increased danger from any one of a number of environmental bacteria. Your doctor prescribes the antibiotics for a reason, and even if they are being used as a prophylactic precaution, they are important.

Do not stop using antibiotics until advised to do so by a doctor.

Andrew

He told me to stop using them after being prompted my wife who found on the www the drops by their name and the possible side effects they have! They increase photsensitivity. Stopped them last night but stil can't look outside through sun glasses without it being with watery eyes.

I will see him Sat. This whole thing has been a real pain so far as you may have noticed my my messages. I hope I have not made a terrible mistake?!!

Did he not prescribe an alternative antibiotic? Do ask him on Saturday whether it is sensible for you to be without any antibiotics so early after surgery.

Andrew