KC getting in the way of life

[James_Ldn]

Hi James,
Did the CXL improve your vision, allow better chance of fitting a lens, is the procedure painful? I've got my appointment on sunday really positive about it so hopefully I can get at least one of not both eyes sorted(left is worse). In the past I've had general comfort issues not able to wear them during long days at work, surface greasing issues. Are you still attempting to find suitable lenses?

Hi there,

The operation itself isn't painful but did feel painful for the first 48 hours. Nothing too terrible though!

The CXL certainly stabilised my keratoconus but I didn't really get any improvement from it. I've never really had an issue with the comfort of the lenses, more so with the quality of vision. I don't think this has changed since the cxl, which is why I'm now looking at other procedures which can flatten my astigmatism a bit. Good luck for Sunday!

[drink]

If you are unhappy with the service you are recieving by your hospital, I would suggest you go back to your GP, and ask your DR to refer you to another specialist / hospital. Possibly even to the one your sister goes to? It might be worth the trip.

Going private can be expensive, however some private can be really very good.

When visiting private, ensure you get a copy of their notes, inc notes of what lenses they tried etc for your record. Just incase if you decide to go elsewhere, you can present them with your notes and show what has and hasnt been tried.

In your private appointment, you may also want to take copy of your notes held by the hospital to show the private consultant, to help give them a clear idea of what has been done so far.

You are entitled to by law, to have a copy of your notes held on you (im sure your already aware since you work in the NHS, however it may help others who were unaware) so do not hesitate to ask for copy of your notes.

Good luck with the appointment.

[liseyloojack]

The appointment went really well! I have a pair of "so clear" lenses. Still building up the wearing time. Wish i had done this years ago. Each lens was 120 pounds, consulation was 100 pounds and follow up 60 pounds(ouch)!. I am still under the nhs eye hospital and they stock the so clear lenses, so the lady I saw privately will give me all the details so I can return to the care of the NHS, so it was really just a one off expense and worth it! I was reccomended different solutions to use, preservative free eye drops, and filling and inserting the lens with plain saline as previously i had been using Boston solution which contains detergents in it so could have added to some of the confort issues i was having. I have an appointment with the corneal surgeon in a couple of weeks to look at cross linking so will find out whats the latest. I have one question for him....when I'm 90 years old will I still have to be putting in these lenses or will there be other options(my hands are shakey already! )

[Lia Williams]

That's great news! I'm really pleased for you and I hope that all goes well at your follow-up appointment.

Lia

[liseyloojack]

Hello,
Just an update, so I went to the eye hospital today and saw a corneal surgeon who explained the only option formy left eye was a corneal transplant which I was pretty shocked about. I may be a candidate for crosslinking in the right eye however they will not know till the day of the procedure if they will be able to go ahead with it or not depending on how thick the cornea is once they insert some drops. I have been put in the waiting list for both procedures but im obviously really nervous about the transplant in the left eye and worried about getting the CXL procedure done in the right eye as it is my good eye. My current lenses are comfortable but I know this condition is going to get worse so I hope im doing the right thing going ahead with this. Now I need to start reading abut grafts aswell...oh dear

[CrippsCorner]

worried about getting the CXL procedure done in the right eye as it is my good eye

I have the same fear! Mine's happening on Friday so not long to worry about it now

Sorry to hear about the transplant news, I hope everything goes okay.

[liseyloojack]

WOW good luck for Friday! think of yourself as lucky to have the option of that treatment, you are basically stopping it getting worse so you will hopefully never be in the position where you need a transplant, ive heard its uncomfortable for a few days after but it will all be worth it and I'm sure it will be a relief for you when its all over! x

[liseyloojack]

Yikes that was quick, got reffered for CXL yesterday and have appointment on Friday the 6/12, how long will I need off work?

[CrippsCorner]

Last time the consultant gave me a blank sick note lol, and I just filled in the dates I went back on... I had a week off last time. But this time, because I'm relying on my bad eye, I've asked for at least 2 weeks, maybe 3, just have to see how it goes.

[liseyloojack]

well good luck for tomorrow and let me know how it goes!