corneas getting thinner what next

[kitty kat]

Was at the hospital with my oldest son (16) last week, 6 monhs since last time and there are still changes happening and they were hoping it would be starting to settle by now, but no.

Cornea thickness is worrying me, left 410 and right 460, we have to return in 2 months and will discuss, if not starting to settled, next steps, but cause his corneas are so thin are we talking transplant? or is there any other treatments?

He had crosslinking a few years ago but due to thinness, after scraping and drops, consultant thought it was too risky to use the light.

Some reassuring words of wisdom would be greatly appreciated


Katrina

[Andrew MacLean]

Katrina

I am sorry to learn of your son's continuing deterioration.

There are, of course, non-surgical management options for keratoconus. Lenses are the obvious route and with so many lens types and lens materials now available it may be possible for your son to enjoy very good correction and lens comfort for many years to come.

A graft is always there, on the horizon, if it is needed. I waited until I was blind in both eyes before I agreed to have my first graft and I now enjoy better than 6/6 vision.

Every good wish.

Andrew

[longhoc]

Hi Katrina

While your son's corneas are thinner than the norm, they might not actually be at what could be thought of as "unstable". I lived quite happily with corneas that thinned progressively over a 20 year period. Starting at c. 500 microns and probably losing on average 10~20 microns a year (but not in a linear fashion, it did happen in fits and starts), it wasn't until I dropped below 300 microns that the considered opinion was that I might be best thinking about a graft. But even then, there was definitely the option to keep going without. So there's no need to worry unduly given what information you've been provided with. A graft may still be 20 years away.

Have you and you son been able to sit down with a consultant and have a good chat about all the possibilities, what the pro's and con's are and how you son feels about things ? I'm a bit concerend that you'd been given the impression that the Keratoconus should be stabalising at age 16. From what I understand, it's actually the peak time between one's teenage years and, say, your mid-30's for Keratoconus to progress. I'd hate to think of anyone getting "bounced" into a graft when a perfectly acceptable management regime could be devised using lenses. Getting the best advice you can is crucial. Anyone telling you that Keratoconus which is progressing age 16 with 400+ micron corneas indicates something atypical does -- to me -- sound like mis-information.

Best wishes

Chris

[cloud]

What measurement is best used for determining corneal thickness?

It's something I never paid much attention to over the years but I've recently been told that both corneas are extremely thin and to consider a graft.

[kitty kat]

Thanks Andrew and Chris for the info.

Jordan has been wearing contacts for over 2 years, trying different lens and eventually finding what he can can wear with comfort and giving him some sight.

Although he was diagnosed 4 years ago, I also thought it was early to settle down. I havent seen my consultant, only a member from his team for over a year.

Next time I go Im going with a list of questions and I dont want to hear "well we need to see next time your here", come home worried and then I ask you guys silly questions.

Thanks again for your experiences Andrew and Chris

Katrina

[Lynn White]

Katrina,

You said your son "had crosslinking" but actually, he didn't, did he? The surgeon stopped before he applied UV light. At the level of corneal thickness you describe, CXLIS still perfectly possible. There are many surgeons who really specialise in CXL and they have more confidence to treat relatively thin corneas. Obviously, there may be some particular reason why it was abandoned in your son's case, but if so, you need to know why.

Have a look at this thread here http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=7038 where I discuss the risks of CXL and when to decide to get it done.

I cannot say this enough: keratoconus used to be a condition where one just fitted contact lenses until you needed a graft. This is certainly no longer the case. There are many options open to patients now.

Cross linking has opened up so many surgical possibilities: INTACs, IOLs, AK ("relaxing incisions"), T-CAT, KeraFlex all of which can utilise CXL to "freeze" shape improvements in place. Contact lens advances mean that if one type does not work - there ARE other options. Increasingly, some cash strapped NHS clinics are struggling to offer the full range of lenses that are out there, so always check to see if you can be transferred elsewhere if there is an issue or seek help outside the NHS, if you are able. Access to Cross Linking and associated surgeries are very limited within the NHS.

As such, grafts should the the LAST option, not an early intervention. This is because although they can be spectacularly successful, they can also go wrong or produce complications. Also, they do not last for "life" if you are are a young person.

The trick is balancing risks against gains and choosing the path that is right for you.

Katrina, if you want to ask some questions (or perhaps to ask what questions to ask your consultant!), you can contact me - details in my signature.

Lynn