2008 Diary of Crosslinking (cxl/ccl) treatment!

[cclman]

No He did not. Its hard as he and his clinic are in another country 2 hours away from me by car but I'll ask him. They gave me antibiotic drops and said use bottel till its finished. It would have lasted only 2 weeks.

[Andrew MacLean]

In those circumstances, I'd go to my own GP and ask him or her to look at my eye and decide whether I might need some antibiotics.

Andrew

[cclman]

I dont have my own GP no one does its all private here, I did'nt think people did in the UK any more what with the poor old NHS etc... but maybe I'm being negative? I am seeing him Sat so hopefully all will be resolved. I have had an ear infection for the last 3 weeks since my holiday and met a general Doc today who gave me antibiotic pills, I was thinking that maybe be slowing down my eye recovery??? maybe?? what with my eyes and ear its been a right old carry on as they say.

[Andrew MacLean]

Actually, in the part of the UK where I live the NHS is not either 'poor' or 'old' but always seems well resourced, staffed by dedicated and highly competent staff AND offers access to state-of-the-art facilities that are free at the point of need.

I don't think that a systemic antibiotic would have a slowing effect on your recovery from eye surgery, although they probably wouldn't help much, either, as your cornea does not have a blood supply.

All the best on Saturday.

Andrew

[cclman]

opu are lucky to have a good NHS hospital etc near you its not like all over the UK. I worked in the NHS for 8 long years producing stats. Maybe its improved since I left 5 years ago. I know staff work very hard however, as we know many trust are badly under funded etc but lets get politcal and enough to say that the NHS seems like a 5 star system when you compare it to other countries but enough said. Eyes very sore tonight its really beginning to get me down but I suppose I must just wait and see what happens. Thanks for your support.

[private104]

hello. I think my experience of the NHS is the same as Andrew's. My GP has a very modern and well equipped surgery. I live quite close to a great ophthalmology department. I have no complaints at all except that my corneas were too thin for me to get onto their CXL study.

I do struggle with my lenses but theY are infinately patient with me and keep trying different types.

I am glad and grateful for a good system for which I can pay throug my tax.

[rosemary johnson]

Errrm.... about antibiotics:
I was only on antibiotic drops for 2 weeks after my graft.
Obviously, if I'd gone back for one of the follo-up appointments and they'd spotted signs of infection that would have been longer, but a week in they said it looked fine and only use the chloramphenicol for one more week.
I guess practice varies depending where one is.
As regards GPs: one has to be registered with a GP (sometimes it is a team practice and one can go to see whichever of the team one prefers). It is the GP who refers to specialists as needed, issues repeat presecriptions etc.
What this means is that for someone like me who has 2 long-time health conditions I largely manage myself, the GP is the "bottleneck" or doorkeeper in the way of seeing the people I know I need to see and getting the repeat prescriptions I know how to use and manage on.
And when I do go to the GPs, they don't know me or recognise me (well, only the practice nurse who does the asthma check-ups), and sit there asking "Who do you normally see?" and clicking through their computer records to see who I saw last - while I saw pointedly "I don't normally see anyone; I'm not normally ill!" and try to tell them what the problem now is while they give no sign of listening!
ANd meanwhile, the eye hospital are quite happy to write and phone the GP who doesn't know me and tell him all sorts of things including some quite clearly inaccurate (!!) and generally carve things up behind my back without deeming it fit to let me know about this....... said friendly asthma nurse looked up something on her computer not long ago, and found a letter from the eye clinic that was about someone totally different with my name at the top! They did apologise for this and ablamed a faulty dictation machine.....
I too worked for the NHS - from 1990 to 1997. Not a very happy time... at one stage the saying was that "Staff morale hit rock=bottom about 18 months ago and has been plummeting ever since."
SOme things are better now (I left only shortly after the 1997 election) and others were still bad or even got worse.
As regards diaries of grafts - varius people who've had grafts have posted topics on here giving regular updates on their progress. It shouldn't be too hard to find some by looking back through the General Discussion area for topics with graft in the title.
Rosemary

[Andrew MacLean]

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

[cclman]

Andrew is lucky to have a good service in his area as are others on this forum. I am of course out of that now and not in the UK but I only ever met the same GP and that was when I was a child, after that I always went to a pratcice in North London and was met by rude grumpy reception staff and always met a different Dr each time who seemed automated probabably from over work. They seemed to have a large turnover of Doctors. I expect things maybe better in Scotland?

Here in Eastern Europe you pay for private treatment or bribe a doctor to get ahead in the que, state hospitals are very grim but staffed by true good people who care and are only paid about 300 pounds a month!!!! CXL/CCL is not done where I live so we had to go to CZ, a two hour drive away by car. The doctor has said it will take weeks and I hope will offer some good drops on saturday. I was thinking maybe its possible to get Vitimin drops etc to make the corneas healthy and thicker like a kind of "hair thickner" if you see my meaning? I must admit I worry for the UK on a number of issues and the NHS is one them, but this is not an area to be contraversial or political so I'll shut up. I came here to swap and chat ideas and experience on cxl/ccl. My posting is about CCL/CXL or crosslinking as its known my treatmant was not grafting and I am posting from SK although I am British. Its great this forum as not being in The UK its the only place to hear others experience thanks to Anne for that.

Of course not being a local, or speaking Czech has conpounded the problem and you can't get it done here. Life is not easy at the best of times!! I'll report back after Saturday fingers crossed. I hope my eyes get better soon as my son is due to be born in early December!!!

[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.


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.



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!!!!!