UK Keratoconus Self-Help and Support Association

Hi Everyone, I’m new here but I’ve had kerataconus for over 35 years. I’ve been wearing gp lenses for all this time and I’ve generally been stable until about 6 weeks ago when I developed hydrops in my left eye. I’ve found the hospital quite blunt when delivering news on my condition which came out of nowhere and I’ve spent most of today in floods of tears after being told that I need a graft. On top of that the waiting list is over a year. I’m completely terrified and so upset. Does anyone have experience of hydrops recovery as I don’t think my field of vision is directly impacted by the hydrops scarring. Any advice would be so welcome as I know you’ll be aware just how frightening this is.

Hello and welcome,
Yes, a hydrops is scary, but it doesn't inevitably lead to a corneal graft. Have a read of this article https://www.keratoconus-group.org.uk/in ... ratoconus/ written for us by one of the principal optometrists at Moorfields. And we have several people here who have had more than one hydrops episode and continue to do well in contact lenses. If you do end up needing a graft, there's lots of people here to testify that it isn't the end of the world - for me, grafts gave me my life back.
As Ken's article says, the hydrops needs to settle first before contemplating a graft, so waiting a year isn't a problem and you may find that a graft isn't necessary after all. It sounds from what you say that recovery is already beginning for you. So it's now a question of being patient and seeing where your vision ends up once recovery is complete. All the very best, and let us know how it goes.

Thank you so much for your reply. I’m a bit calmer today it’s really good to be able to use this site as not many people understand the condition. I’m going to get a second opinion next week but as you say patience is the main thing. I’m going to have a good read of the article. Thank you.

Hi,

Can I reassure you? I had a hydrops in early 2018. The first few weeks are a bit of a challenge as you don't really know how things are going to work out and nor will your consultant. It does depend on where the split in the cornea has occurred and it will heal itself over time. After about 3 months you should notice some improvement. First, the split needs to heal then the swelling and cloudiness will start to sort itself out. There is some debate in medical circles as to whether to intervene at this stage, but it does seem that for most patients letting your body sort itself out is the best course. Sometimes you can be lucky and the "tension" in the cornea that is released by the hydrops actually allows the cornea to heal into a more satisfactory shape. I was refitted with a new contact lens at 6 months and was driving again. At about the 12-month point I did agree with the consultant that a graft was the best long-term option, and I have not regretted it.

I don't know where you are being seen, but if you are anywhere near and able to get to Moorfields I would highly recommend their approach. If you need to, your GP should be able to set you up for a referral there or another eye specialist hospital. I would suggest there is not a rush for this as until it has all settled down no one is going to be able to advise you on the best treatment. Maybe get something lined up for 6 months from now.

Thank you so much for your comments. I am living in Wales but I’ve booked a private appointment in Moorfields which is next week. I think the shock hit me hard last week as the doctor I saw was very direct and basically offered no hope of recovery. He had.a medical student with him and just talked about me like I wasn’t there. I’m not sure how my recovery will go but I didn’t even know this could happen especially as there was no sign of anything being wrong. I’ve had very variable treatment over the years and there’s not enough information for patients with KC that the hospitals give out. Not sure what they will say but I am hoping and praying there will be some hope of recovery. I hope all goes well for you whichever route you choose.

Let us know how you get on next week. Do be aware that you can switch from Private to NHS at any stage. We are aware that there are some funding/referral issues in Wales, but it may be appropriate to talk to your GP again when you know what you want to do.

Hi there, I thought I would update you after my visit to Moorfields. Just as you had said the consultant was far more balanced and positive than the other doctor I saw locally. He advised me to wait and not pre judge the outcome. I felt far more assured and less panicked. I won’t know how things have settled for a while but at least I can go forward with hope of recovery. I’ll keep you updated and thank you again for your sensible advice at a time of complete panic. It’s such a shame that keratoconus isn’t better understood. I’m so glad I got a second opinion and I’m really grateful for your wise words.

That's good news. Keep in touch and do come back if you have further questions later.