UK Keratoconus Self-Help and Support Association

I had a DALK on the 7th September. Initially there was a problem with air trapped between my cornea and the graft - this was corrected in rather long and unsettling 40 minutes, after being told it would take a matter of seconds. My vision was like looking through the bottom of a goldfish bowl for a few days - I was given drop and ointment to apply.

Since then my energy levels have been all over the place, as has my vision. On 20th Sept I went for a check up and was told my vision had improved a lot, in fact it was one of the fastest recoverys the surgeon had ever seen - which was fabulous to hear and gave me heart that I was on the mend.

Since that day I have felt my vision was decreasing and becoming hazy. I was prepared for fluctuations in my vision but this decrease seems to have continued. I went to see one of the surgeons doctors on Tuesday just gone (27th) and was told my eyes were becoming dry and that this was part of the healing process. They gave me some preservative-free eye drops to help keep my eye lubricated. My energy levels have continued to vary and sometimes I feel soooo tired. On the Tuesday I got the drops I was feeling pulling in my eye and was generally uncomfortable.

That night I awoke with my eye shield off. Next morning there was a yellow stain on my finger and an eye lash on the white part of my eye ball. I contacted the hospital and was told how to remove it - which was fine.

Since then, my energy levels have continued waver and I've continued to feel that my vision was decreasing so this morning I went to the see the surgeon who told me there was a scratch on my eye, which I fear was caused by eye rubbing (and long nails) from a few days earlier. I'd be surprised if it had occurred previous to that Tuesday as surely the doctor I saw that day would have seen the scratch...

Is this scratch something for me to worry about long term or should it heal ok? I've been given different drops and ointment to apply before my next appointment on Tuesday. I've also been told to keep my eye taped up.

I just get this feeling of dread with anything connected to the graft and, although I understand it takes months for the vision to settle, I've not been prepared for the headaches, nausea and varying energy levels since.

Any advice appreciated

Any surgery is an insult to the body, and eye surgery is as traumatic as they get.

It is because we all tend to run out of energy very quickly after surgery that doctors are at pains to lay out a list of things we should do and things we should avoid. Take things easy, do not over stretch yourself.

Every good wish.

Andrew

Hi Andrew,

The scratch that has appeared on the graft is new and is my major concern at the moment.

Do you think think this will affect the long success of the graft or should it heal like most scratches do?

fatar

That's a hard question: I haven't seen the scratch on your transplanted tissue. I do know that when I had a scratch on my cornea it healed without leaving any permanent scarring and my transplanted tissue is working fine.

Your ophthalmologist has seen your cornea: what sort of advice did you get from him/her?

Andrew

Hi Andrew,

Well, I asked whether it was something I should be worried about. I was told that they'd fix me and that I worry too much (which is probably true - but this IS my eyes!)

I came away from it uncertain as to what the consequences of the scratch were or how bad it was. He actually seemed more concerned that I wasn't blinking enough which was causing my dry eyes...

Hi

Sorry to hear about the scratch. I think it's always unsettling when things don't go smoothly, and your're absolutely right, the prospect of vision failing can be frightening. I think if there had been anything to worry about, Dr D would have flagged it up (he's demonstrated with me that he's a real perfectionist, etc). I don't think he's a man that likes anything going wrong, hence the events when there was the issue with air in the graft. I know you've had a graft, but the eye does heal quickly – it's the vision that takes the time to catch up.

Best wishes.

Caroline.

update....

So, I went to the surgeon on Tuesday. It appears the scratch has healed a bit but not completely. So I've been put on some different drops and had a contact lens put in to retain moisture.

I think the reason it's taking long to heal (the longest one he's had for years apparently) is because I probably went back to work too early and that I managed to pick up a virus. Throw in a 'not-ideal' diet in there too and my body is just doing too much.

I did come away on Tuesday though thinking it would all be fine. The surgeon was certainly calmer with me and made me feel everything was going to ok - which I know he wants as much as I do.

Going back on Friday to get the lens removed and see if the scratch has healed any more. I'm now fully armed with fruit, veg and plenty of fluids!

Hi

That's good. You've every right to be concerned – it's your sight (and it's not cheap) and it's a big deal. Glad you've been given some reassurance and are feeling more positive about things. I do wish more realistic advice would be given about going back to work though – as you know I was told 'a week' but am really struggling.

Er, just checking... the fluids... not the alcoholic sort?

Caroline.

The fluids is definitely water...

I went back today and the great news is that scratch has healed and the vision i've had the last few days has been pretty good. Also, my energy levels are coming back and I'm starting to feel a bit more normal day by day.

I'm a little confused about the medication I'm taking though and I'd be interested to hear what other people are on.

Before I got the scratch I was told to get a repeat prescription of Lotemax which I was going to take 4 times a day once the Topradex had expired.

When the scratch occurred (Saturday) I was told to take the Lotemax (4 times), Chloramphenicol (4 times) and Lacro Lube 3 times a day,

On Tuesday, during a check up, a lens was put into my eye and my medication changed to Chloramphenicol (4 times), Dexamethasone (2 times) and Hylo Forte in between drops (this combo has worked great for me these last few days)

Today, the lens has been removed and I've been told to take Dexamethasone (4 times), Hylo-Care (in between drops) and Lacro Lube at night.

I'm just a little confused why I was put on the Lotemax (with a repeat prescription for about a year) and have now been put on Dexamethasone (again with a repeat prescription for a year) but am just taking the latter.

My eyes feel dryer tonight than they have the last few days. Could this be down to the removal of the lens? Or is it maybe the medication - Do I just need to get used to all this Dexamethasone (which I see is contained in Hylo drops too)?

After reading some negative comments about dexamethasone recently I'd be interested to hear which medications others are taking?

I'd suggest that, if your eyes feel dry, you might use artificial tears like Clinitas Soothe. Whatever you decide to use, try to make sure that the drops are preservative free: the preservatives in some artificial tears can actually cause dry eye.

Andrew