2008 Diary of Crosslinking (cxl/ccl) treatment!

[pepepepe]

Hi cclman,

What i'm thinking is, once the Epi has healed over, which should have happened by now, there should not be no infection risk (?) they usually give you more drops (and pills for pain) than you need, just to be on the safe side (?)

Let us know how things go at your next Dr's visit, or before, it can be very dificult when your going through recovery and the low vision is can bring during the healing, thumbs up for keeping in touch with your posts !

Pepe

[Andrew MacLean]

cclman

A birth in early December will certainly lead to a change in your perspective on many things; I am sure that everybody here wishes you well and hopes that your sight will be restored in time to enjoy the early days of your son's life.

As to my being lucky, I think that it may be that the Scottish experience is different to that in other parts of the UK, but I am not in a good position to comment on that. I did once suggest to someone in England that she would be better off moving to Scotland, but that unworthy comment was made tongue-in-cheek.

Every good wish.

Andrew

[cclman]

I may sound like a "Moaning Mini" and perhaps I am, but this forum is good therapy while waiting for the dinner plates to heal!! I have had an ear infection for the last three weeks so my ear hurts, now my eyes hurt and to make matters worse they have started drilling the road outside so no rest for the wicked! I am the type of person who would be sold 2 weeks in the Isle of sunshine and it would rain every day!! Enough said!

I have been to Scotland Andrew and it was nice I even had some haggis (not sure on the spelling) Its a nice part of the world what I think is also good abot Scotaland is the property selling laws, very fair and clean unlike England but I'm going off the subject again it must be the drops leaking back to my brain!

When I open my eyes without sunglasses its like chopping an onion, its even like that with them at times!! I'll keep my progess updated and I hope it will act as a future reference for others thinking of ccl/cxl. Of course, not forgetting that everyone may react differently to ccx/cxl treatment and some will be seeing as they did before after only two weeks, so only read my diary/posts as a guide. In my case, it may take a bit longer !?

To summarise ccl/cxl treatment so far: I would say make sure you have full information before you do it, find a good place and nice and patient doctor or eye surgon who will explain it all and not get annoyed when you ask questions. Shop around if you are paying for it but you may be lucky and get it free and done well on the NHS! I don't know if that's possible at this time? I had it doen in the Czech Republic as I do not live in the UK to avoid any confusion. Over and out for now.

[Andrew MacLean]

So far as I know, CXL/CCL is available only as part of a research programme in some NHS centres. At least one member of the forum is seem by an NHS consultant who is conducting a study programme, but he was not included in the study because his corneas were already too thin.

Part of the reason for caution is that before a therapy can be passed for use in a hospital or the NHS more generally, it has to clear the hurdle of the medical ethics board. The main concern of the ethics committees in relation to a new therapy is to be satisfied that it is possible to have 'informed consent'. This means that the surgeons offering the procedure have to know and explain what can go wrong before the patient gives consent to the procedure.

It is only as they accumulate experience like yours that ethics committees can be sure that it is even possible to give a coherent and comprehensive idea of what can go wrong, what can go right, the hoped for outcome and the possible hurdles that may arise in recovery. When all that information is to hand, they will make their judgement and either allow or disallow the therapy for general use in the hospital.

In the NHS in England (and maybe Wales) there is the additional hurdle of NICE approval; this has less to do with ethics and more with the cost effectiveness of the therapy. On the face of it, CXL is currently available for roughly the cost of a scleral lens. If a good success rate could be guaranteed then NICE would probably make the judgement that, all ethical considerations met, the therapy should be available. If, on the other hand, there was an accumulation of experience of problems arising from CXL, then NICE may take the view that it should not be generally available.

I do not think that we are very far from decisions being made in relation to CXL. Others are more sanguine than I about the merits of going forward, although I think that had I been offered CXL, even as an experimental therapy, when my corneas were still thick enough for me to benefit from it, I should probably have gone ahead.

We are all grateful to you for sharing your own experience with us.

Andrew

[rosemary johnson]

Two things, Rosemary:

1 cclman does not seem to be posting in the UK. He gives his location as 'Europe' and certinly had his procedure outside the UK
2 His diary is not post graft, but post CXL/CCL.

Andrew

Well aware of both those, thanks, Andrew. cclman himself suggests someone doing a post-graft diary.
Rosemary

[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!

If this were available on the NHS in the UK, I expect there would be long waiting lists but if you can afford it? pay for it yourself, It would be quicker. I'll report back in a day or so, see Dr tomorrow. Tomorrow I reach the 15 day mark since it was done.

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.

N.B: If I get locked out this forum you can email me or ask a moderator and they can send on your email if I can help you with any questions. My email address is albertshoemann@gmail.com (not real name as the www can be unsafe!)
ccl, cxl, crosslinking are the same thing by different names.

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

[pepepepe]

I noticed on other CXL posts that CXL was done in one eye at a time, letting the first one recover first before doing the second eye, it must be tough having two eyes done at the same time.

Over in the UK in the NHS they have everyone trained to do transplants, not CXL yet. CXL is available privately though, with the approvals needed for that, my GP was telling me.

[cclman]

I noticed on other CXL posts that CXL was done in one eye at a time, letting the first one recover first before doing the second eye, it must be tough having two eyes done at the same time.

Over in the UK in the NHS they have everyone trained to do transplants, not CXL yet. CXL is available privately though, with the approvals needed for that, my GP was telling me.

I wanted one eye done but he said lets do both?! he is a doctor.... so I trusted him- maybe stupid maybe wise? only time will tell! If you can't get ccl/cxl done in the UK go to Europe. I can PM you the clinic name where I went if you want? I paid a total of 1,000 pounds for both inc all tests, visits and drugs and drops. The clinic where I went felt Ok and the eye testing gagets looked very modern although the first person that I met on the day of the treatment was a young (but prety) Czech girl who spoke zero English except to say "eyes open", "eyes close" when I looked in the eye machines. She did not tell me to look at the baloon on the screen or not to blink when it fires air at your eyes, which made me a bit nervouse, the second person that I was sent to see in another room after the girl, was a man and he spoke good English, he tested my vision and then lastly I met the surgon who spoke excellent English (studied in Canada and was trained by the inventor of ccl/cxl, or so they said) but seemed in a hurry and did not explain what would be done or what would happen after (except to say "don't plan anything for the next 5 days" which may have been optermistic on his part). Luckily, I had read what I could find on the web about cxl/cccl but knew nothing about the after effects of the treatment. I have been in touch with a girl at the clinic who has been very nice and helpful and even emailed me info and sent me text messages to see that I was OK. At the clinic they were very soft/kind and I felt totally relaxed about the treatmant.

In Eatern Europe, Doctors work part-time in the big grim state hospitals and part-time in private clinics so that they have a semi decent or good wage. I think they work very hard and are often exhausted! They make the same in 1 day at a private clinic as they do for 2 days or more in the state hospital! They go into medicine for old fashioned reasons to help people, rather than get rich but Im going off on another subject again.

[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!
.....Update to CXL/CCL/Crosslinking treatment 20th Sept - Had eyes checked after the treatment on the 5th of Sept. Doc said the surface area is healing well and tested my sight by reading the letters on the wall. He also gave me two injections in both eyes to aid the healing process and haylon drops, the injections hurt a bit but I had drops before to dull the feeling. He could only say the light sensitivity will fade in time although how long this will take I dont know? He offered me a ring in 3 weeks (I told him I'm not that kind of boy and to at least buy me a drink two first or some flowers!!) But joking aside he was talking about intacts or as there also known as "RINGS" he said my bad right eye could have one. He said they are plastic, we asked how long they last and he said forever!! (can this be true?) To me 3 weeks seems fast after ccl/cxl and I know nothing about these new fangled RINGS! what are they? do they hurt ? and do you feel it i.e when you blink!!?? it could be a curse rather than a cure. All feed back very welcome on that issue! PLEASE. Thanks.


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.

[Andrew MacLean]

I have noticed elsewhere that INTACS are often offered in concert with CCL/CXL.

Andrew