UK Keratoconus Self-Help and Support Association

On Wednesday I got a horrible pain in my left eye and my RGP lens fell out, so I went off to remove the soft one too (I wear piggy back) and instantly knew something was wrong.

To cut a long afternoon in A&E short, I eventually saw the KC specialist and I have had an acute hydrops but because the cornea is so thin it has gone right through the cornea and perforated it, causing a collapse of the anterior chamber and my eye is leaking. So so painful!

Had a check up today and although there is still a leak it has healed enough to allow the anterior chamber to be restored, mainly because I have a soft lens over the hole.

Anyone else had this problem? If so did you have a graft or just wait on it to heal and hope for the best? How long til you managed to wear a RGP ?
Thanks

Ouch! You certainly don't do things by halves, Dalbeath. There've been quite a few hydrops cases posted here, but I can't remember anything as extreme as yours. But it sounds as though it's now under control (has the pain reduced as well?) I think most surgeons prefer to wait until a hydrops has healed before thinking about a graft, though I don't know whether that's still true after a perforation. As for how long healing takes, that seems to vary a lot from a few weeks to quite a few months. So sorry you've had such a rotten end to 2011. We'll all have our fingers crossed for you that healing continues to go well.
All the very best
Anne

Thanks Anne, they have said that if it will heal then that is the preference but if it does not it will first be glue and if that does not work an emergency graft. But because the worst bit of my cornea is so close to the edge it will be a complicated graft so they would rather not have to do it as an emergency (obviously I don't want an emergency graft either)

How the hell in just 14 months at 40 years old can I go from no signs of KC, good vision and only a very very mild astigmatism to having KC in both eyes, one already had CXL and the other an acute perforating hydrops??? Specialist also said he had never seen a perforating hydrops and asked if all his registrars could come in for a look

I have antibiotics so just really hope it does not get infected and I can't lift anything as that makes it leak worse and then the soft lens gets flushed out.

my left eye (ungrafted) literally split under the slit lamp a few months back now and omg was that painful!! so I can empatheyse, inbox me if youw ant to chat

Lea x

Just back home from a two day trip in hospital to have Intracameral perfluoropropane gas inserted !!!!

Hi Dalbeath

I had a problem to when piggybacking. Like you as soon as I took the soft lens out I knew I was in BIG BIG trouble. Rushed to AE never known pain like it. Turned out the when I took the soft lens out I took 3/4 of my epithelium with it.

My KC was so advanced that the cornea was breaking down and couldn't hold on to the epitulum. Not long after that I ended up making a private appointment to see the top man in the area as I was not getting anywhere with his "junior staff members". Told on the night it was game over and that I need a full thickness graft (done in May this year).

Vision is not great yet but there is potential for glasses so I am sure it will be worth it in the long run

All the best
Ian

Hi GrandPaClanger,

It's quite a worry when you take your lenses out and get the feeling they were 'holding your eye in!' I have been very lucky to now have a hot line to 'The Top Man!' I now realise the difference between seeing an eye specialist with an interest in KC and a Corneal specialist. Unfortunately the corneal specialist is over 2 hours away but worth the trip every time. The gas that was inserted into my eye seems to be stopping the leak so fingers crossed. I also know I am heading for a graft but hope to manage to wait til the summer as it would be much easier to take time off (I run a farm!)

xx

Hi

Hopefully the gas will patch it up. Just don’t go near any naked flames if it is still leaking .

I was told end of November 2010 that I needed the graft. Mid December they told me it would be done on the 3rd May 2011 which it was to the day (still amazed they could do that).

Sounds like you are at the stage I was where you know the time has come for the big G. Got to be honest the Op is fine and only slight discomfort afterwards. Just be prepared for it to be a long recovery period till the vision is sorted.

All the best and PM me if you are concerned about the OP should the time come
Ian