2008 Diary of Crosslinking (cxl/ccl) treatment!

[Anne Klepacz]

Cclman - I must admit I'm puzzled as to why even 20% of you would want to be rushing into Intacs at this stage. I'm no expert - neither crosslinking nor Intacs were available when my KC was bad, but as I understand it, the effects of crosslinking continue for several months and even several years after the treatment. So it would seem sensible to wait and see what changes the crosslinking on its own produces before thinking about another procedure. In fact, if I've understood the talk we had on crosslinking at last year's conference correctly, the initial effect of crosslinking is to thin the cornea further in the first weeks before it starts to thicken up and produce the benefits it's supposed to. So going for an invasive procedure like Intacs so soon after the CXL seems quite risky to me. I can't see you lose anything by waiting - particularly with your happy event due in a few months time. And your wife might appreciate having a stress-free partner around that time!
Hope the next appt goes well.
Anne

[cclman]

Anne

I agree intacts seem rather soon, but the Czech doc suggest it at a "special price or free" so I felt tempted. I only had the CCL or "crosslinking" done 2 weeks ago and I next meet him in 3 weeks. You made an interesting point that it thins and then thickens, that may explain the light issue (not forgetting they scrape a layer of the cornea as you would strip wallpapaer) so maybe thats why it hurts? Both eyes are a lot happier now and the light issue is getting better. I may have it done next year? but where or when I dont know? as I'm not sure where I'll be in the world. I am excited to see if the CCL helped and if it wil imprive the old dinner plates and get them thicker? I'll know in 3 to 6 months- Its a pity you cant by cornea restorer like you can "hair thickener" or hair conditioner! then we could all just add a few drops and "hay presto" our Keratoconused eye balls would be better..........Maybe in the future? I have decided Not to do the inatacts, I can't face the drama, risk or stress at this time.

[cclman]

I am not sure on time off work under UK law for operations but here are some links:

http://uk.answers.yahoo.com/question/in ... 356AAAMpxj
http://www.manchestereveningnews.co.uk/ ... knife.html
http://www.direct.gov.uk/en/Employment/ ... G_10027238

If Keratoconus is classed as a disabilty? maybe its no prob in the UK? Others may know? I am self employed so any time I have off is zero pay for me. I think if I were taking time off for CCL if I were in the UK I would just go sick and cancel out any possible agro with my HR dept however if they found out I had an eye op and not told them it could more problems

[pepepepe]

The thing about Intacs (and its only my view) is that it works better in getting the cornea back to a better shape in the milder cases of KC more than in advance cases, but do you want to have an invasive surgery like Intacs where you most probably would get on fine with glasses or contacts in the milder stages ?

If you wear contacts and its intolerable to wear then Intacs may be the way to go, to get you back in to contacts (?) that seems more sensible to me to try if that scenario ever arises. I would say a good consultant (one with a lot of experience) will know when and when not to use Intacs, just as with many things you may get advice for.

[cclman]

I tried the hard contacts and they hurt and drove me nuts. I think there maybe other types to try??? I may just have new specs when the eyes have settled down I decided today intacts can wait as I will have nappies to deal with in December a prospect thats fills me with happiness My eyes can take a back seat for now. Whats your expereince so far with your eyes are they better now ?

[pepepepe]

If you can get out of having medical contact lenses, that is a great result or even getting some of your uncorrected vision back so you can get them in easier !

My story will be too long, too upsetting to tell here if i made a start on it and if I just only made a start on it, it would not do any justice by saying a few lines, so I rather just not tell it and just bottle it up.

[cclman]

I understand if you would prefer not to mention it but I hope you can see better now and your eyes are a bit better than they were? I am lucky not to have had too much agro as I know others have with intacts and with grafts. I am sure technology will advance further and in 10/15 years or so, better treatments including a simple eye drop will be around to restore a cornea like a kinda hair restorer and I dont think my idea is as mad as it sounds I wont have an intact I have now made my mind up on that. My eyes are still sore and play up from around 4 in the afternoon. Last night I tried TV but could only manage 30 mins as they felt sore as if I had been in a pool too long. Maybe they will get better in 6 weeks to 2 months? I'm back to work next week. I went for my first run yesterday wearing my sunglasses, today I may wear a white sweat band on my head to keep the seat out of my eyes, so with sunglasses and a white sweat band on my head, I'll look like a reject from Rocky or and bad Kung Foo movie. I'll have to grin and bear it only I hope no one laughs too hard at me and that I don't see anyone I know! TTFN

[pepepepe]

After my diagnoses it continued to progress, then stopped, however vision has varied day by day.

There is two componants to vision I find:

1) One is quality in Vision

2) The other is quantity of vision

Both can vary, even from one test room, to another test room in another place !

On brighter days your pupil gets smaller and my vision is better overall just a fraction more (but i'm glad to even have that happen!). Cloudy days its not so good or when lighting levels are not great.

Another thing I have noticed is that the cornea can "move" around as its weak.

I am trying to fix a date for Crosslinking, the NHS is a organization in it self and what it does is no "yard stick" to me, it does not govern this countries health services full stop, when you can get it done elsewhere and with that more medical experience can be had.

It looks like your well on your way to recovery cclman, glad your over the worst of it, there is no gain with out pain - the proof is in the Rocky and Kung Fu films, grasshopper !

[cclman]

Hi Pepe,

Went for my jog (the first in 2 weeks since the ccl/cxl) I wish we could just call it ccl as that sems to be in vogue now. I am still in damn sunglasses and looked a twit in them plus a white head sweat band when running but I am a slave to the fat monster a few girls semed to titter when I ran past. I am now using "Haylon" drops which are a kind of gel that you squirt in your eyes. It does not seem to help much and my eyes are still sore when open or shut. I am hoping the ccl will help thicken the cornea and the vision will go up a tiny bit in the bad right eye! I'll know in 3 to 6 months and report back on this forum. I wonder when the day will come when I don't have to wear sunglasses 24/7 !!

P.S Die hard NHS fans won't like me saying this but if you can't wait for the old lady and her waiting lists and have the hard cash, pay for it!!! in the UK or in the Czech Republic or in France. I was quoted a crazy price in Paris but remember its better to get crosslinking done not too far from your home as you will need to go back for check-ups, in my case a 4 hour drive. Get feed back on any clinic before you go for it and if it looks suspect don't go there. I make to appology for my comment and used to work in the NHS for 8 very long years the current state breaks my heart to see (while I still can see ).

[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.

Intermitant updates to follow......... CCL/CXL diary

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.