Should you try all contact lenses before surgery?

[Steven Williams]

I was recommended to have a DALK in my right eye in May 2012 as my corrected vision with Rose K rgp lenses would not guarantee my vision consistently bringing me to the minimum standard of vision for driving. When I asked how long the waiting time was I got no specific response but got the impression it was long. so as no other options were being offered I gave my written consent at the Manchester Royal Eye Hospital.

This week I received notification from MREH of a corneal transplant date of 11 June.

Since being diagnosed with KC at MREH in 1983 whilst at University I have tried out two types of contact lenses on the NHS;- rose k rgp and a semi scleral lens. I have dry eyes.

Could KC self helpers and optoms who visit here list out all the different types of lenses current available under the headings known to me:--

Soft

Rgp- rose K

Rgp piggyback

Semi scleral

Scleral

Should I try all lenses and get a second opinion before going to the knife?

To be honest a corneal transplant scares me to death and I had hoped my KC would not progress to such a level as it prevents me from doing my job and looking after my family.

Any advice/constructive comment would be appreciated.

[GrandPaClanger]

Hi

Depends on why they are suggesting a graft. From a lens of any type you need to get good corrected vision (driving standard in your case), comfort and wear time. There may be other factors involved that make one or more of these not possible. With advanced KC you may have significant scarring that prevents good vision for example. Before my graft I stopped short of scleral lenses. Whilst everyone said they are comfortable i just looked at them in horror (despite wearing RGP lenses for 30 years). I also had issues with the thickness of the cornea and it could not support the epithelium (the outer layer). When I signed on the dotted line I was comfortable that i had made the right decision.

The graft its self is straightforward but for most people its not an overnight fix. I have just passed the 2 year mark. I was up to driving standard for a while with daily disposables (after 18 months) but then got a cataract from the steroids so its back in theatre tomorrow to have that done. There may be set backs like this so you are right to question the decision. I appreciate its not possible for everyone but I paid to see the consultant privately so I got quality time with him. It was £150 I could have done without spending but it was worth it because there is no going back after the graft. I also took the wife along as your mind can go racing off and its good to have someone else hear what they are telling you.

All the best
Ian

[Steven Williams]

Thanks Ian, your comments are much appreciated.

I have a private appointment for a second opinion with a KC consultant specialist in a couple of weeks. The cost is over 200 quid just for the consultation. no doubt there will be added charges for taking topography pictures etc.

Best wishes with your treatment.

[Loopy-Lou]

If there are no lenses available which offer you the required vision you need to live, and comfort and wear time, then it's graft time if you're beyond CXL.
DALK's have much better survival rates than PK's according to the French, a study demonstrated 50% of DALK grafts survive 49 years compared with less than 20 years for full-thickness grafts. Those are good odds. The surgery in itself is ok, make sure you keep an eye guard strapped onto your face at nights for a couple of months, and sunglasses during the day. Any sign of redness, increased light sensitivity etc go straight to eye A&E

[Mousework]

If there are no lenses available which offer you the required vision you need to live, and comfort and wear time, then it's graft time if you're beyond CXL.

That is not exactly true, a good eye doctor will only do graft its so final, There are many operations which can be done such as

Corneal ring segment inserts
Radial keratotomy
Mini asymmetric radial keratotomy

and there are new treatment all the time, you could sign up to clinical trail for advance treatment

[Anne Klepacz]

It's definitely much harder making the decision to go for a graft these days, when the choice of lenses is so much wider. When I had to make the decision, rgps were the only lenses offered to me (although scleral lenses did exist, they were never mentioned). So at the point that KC was severely impacting on my life, it wasn't difficult to decide. Lenses were no longer giving me good enough vision so work was a daily struggle, plus they were hugely uncomfortable, so they came out as soon as the working day was over which meant all social life stopped.
Although I still need contact lenses post grafts, the vision and the comfort I now get is so much better that I've never regretted the grafts. As Lou says, DALK grafts (which also weren't around in my day) give better long term results and have much less chance of rejection. So I guess it all depends on how much more experimenting with different lens types you're prepared to put up with and whether you still have faith that there might be a lens out there that would give you better vision and comfort. And whether your KC is still progressing. If it is, then it may not be worth putting off the decision.
Good luck, whatever you decide.
Anne

[Steven Williams]

Anne

Thanks for your comments. Can KC progress after a graft?

Is there anywhere in the UK where you are going to get the opportunity of trying out all the different makes/types of lenses available?

I suspect the NHS has a very limited range when it comes to contact lenses just like with NHS specs?

Of course it should be based on clinical need but I dont think thats ever going to happen with KCers on the NHS in the UK.

[Loopy-Lou]

mousemat I'm assuming if other surgical procedures were viable they would have been offered, as for signing up for clinical trials, if you mean surgery, that's a brave person!

[Lia Williams]

Should I try all lenses and get a second opinion before going to the knife?

I think that you need to know why your current lenses aren't giving you the vision you need and why they think others won't work for you.

Piggy backing your current RGPs won't work as it won't change the vision. However if you've tried other RGPs in the past that were uncomfortable (although they were said to be a good fit) it could be worth trying that type again and piggybacking them.

You could look to changing to a KC soft lens - although due to demoulding from an RGP it could take months to establish if they could improve your sight.

So I think what I'm saying is, if you can, do get another opinion from another KC specialist optometrist - just to be sure that lenses will no longer work for you.

Lia

[Steven Williams]

Thanks Lia and everyone for feedback.

If I do go ahead and have the op on the 11 June I'm hoping I'll still be able to attend the Groups conference in Manchester on the 15 June if possible - so maybe meet up there.