UK Keratoconus Self-Help and Support Association

Hi all,

Well, it appears that my "ghost image" problem that I've had for a good 8 or so years has finally been figured out.

I'm 25, I've been wearing glasses since I was around 3.5, and despite my horrible vision it's always been corrected. My nearsightedness is around 8.5 or so in each eye, and my asytg is around 3.0 in one eye and 3.75 in the other.

I got new glasses around a month and a half ago - I thought the astyg. was too high, and I haven't been able to adjust well. Something is "wrong" despite there not being anything "wrong," per se. Went to my eye doctor for a vision check, and they told me that the Rx is indeed right. But lately, it's been bothering me, and the strain in my eye has caused for some more blurriness and ghost vision (usually happens at night when, at least, I thought my eye has been "fatigued."

I went back to my eye doctor this morning, who told me that the glasses and Rx are fine - it's my "keratoconus" that's the source of the problem, he says totally nonchalant, and I'll see better with contacts. "My what?" I asked.

So, it appears that I've had this for some time, and it's always been correctable with glasses, but it appears that I'm now at that line.

I'm a worrywart with these things, especially when it comes to health - and my doctor didn't do a good job of explaining this to me.

A few questions:
1) I've read that it stops after 10-20 years. Is this true, in the general population?
2) How "severe" is my case, now that I have to switch to either gas-perm or hybrid contacts? I know I was "mild" before - does this make me "moderate?"
3) I think in terms of "worst-case" scenario - what are the "odds" if this degrading to the point where I'd need a cornea transplant? I'm 25, and I'm scared that this will degrade.
4) My doctor mentioned that taking some notches off of my asytg. Rx will help me a bit. The funny thing is that I didn't notice any problems until this new Rx - I was very comfortable in my old Rx.

What are my next steps? Do I get a second opinion? I'd love to learn that I don't have this, but with the "ghost images" thing, it sounds about right. Visually, my cornea doesn't look warped or cone-shaped, but the diagnosis makes a lot of sense. And my eyes have always hated drops and contacts - but it appears I have no choice. I'm in the US, and I hear the "hybrids" cost a good deal of cash. What's been your lens of choice?

I guess I should welcome myself to the club. I'm still pissed about the diagnosis (even though I've had this for a while already, just had no clue), and I, as a habit, fear the worst. Can someone give me some reassurance here?

Many thanks, and have a happy new year.

HI there! Welcome to the board!

Well keratoconus is very variable and no-one can really answer any of your questions without looking at your eyes. The only thing I can tease out from what you have said is that you are probably still "mild" but my advice as, speaking as a professional, is to firstly go back to your doctor and ask all these questions of him. He has the relative information and has obviously been monitoring you for a while. If he has done topography on your eyes, then you can ask to see the readouts and ask him to explain what they mean. If he has NOT got topography then you are probably best seeking another opinion from someone who has and who can also tell you what your corneal thickness is, as this is also a good indicator of the level of your keratoconus.

As you are in the US, you may like to also look at the Yahoo keratoconics group whose members are mainly in the US. Its an email group, so tends to be harder to find when doing internet searches.

They can give you more details about costs for lenses there and the types available. Contact lens costs here in the UK are somewhat skewed because most people get their lenses through the NHS system so the costs are subsidised. They can also give you some idea of where to find doctors who specialise in keratoconus and and about health care costing and so on.

Apart from that, please do not get worried about grafts and so on!! It has to be said that the people who tend to post in message boards tend to be those with the most problems. I think this is true of any health related message board. People come here when first diagnosed but then settle down and get on with their lives if they don't have any further problems.

Good luck and do let us know how you get on!

Lynn

bradlevinson

Welcome to the forum, and all the best for 2009!

I guess you are beginning to realize that things vary with keratoconus, but at least this is accompanied by an understanding that you are very far from being alone.

As Lynn has already suggested any rules about keratoconus have to be qualified by an 'except sometimes' clause. There are, however, some variables about which we can be confident; while some people with keratoconus will require some surgical intervention, the majority never will.

As you read through the various support sites, do not panic: people who post on this site and on others tend to have come up against one or more of the more extreme manifestations of KC, so that our experience should not be taken as normative. If you do need surgical intervention at any time in the future then you will know that others have been that way before!

All the best

Andrew

Many thanks for the support and the replies - they're very much appreciated.

I'm in "fact-gathering" mode, and while I take comfort in some thing (absolutely, your comments have helped ease my concerns - thank you all so much), seeing other things, of course, scares me a bunch.

For me, the truth is that I've been seeing the ghost images for 8 years. I'm just hyper-sensitive and hyper-aware to everything right now, especially the images that I've largely ignored for so long - it's less easy to do so right now. I also take comfort in the fact that my eye doctor mentioned it so passingly - that, to me, is an indication that it's nothing to worry about right now. That is, of course, easier said than done - especially since my current glasses...well, hurt. I'm sure when I'm fitted for hard lenses, things will get better.

I've been doing some research, and I've been surprised to see how effective and promising CR-3 sounds. I'm in the US, of course, which makes it harder to get this - but I wonder if it's a good option for me right now, in the early stages, to just stop this from progressing. If I got this under control (which, until discovering CR-3, sounded impossible), I know I'll be doing SOMETHING to stop this from progressing. Am I over-reacting, or is this a wise course of action to investigate? I'm going to assume that the answer will be "talk to your eye doctor."

Many thanks again - I've applied for membership in the Yahoo group you've all recommended.

Best,
Brad

Well....

As far as CXL goes you can do a lot of research online and asking the eye doctor in the US may not get much of a response as there is not much going on with it there at the moment.

I am actually starting a website and forum for CXL - it just went online last week so not a huge amount of info on there at the moment. But go along to CXL Club and look at some of the info on there. The main thing about the US is that Boxler Wachler is about the only one doing it at the moment and his method is NOT to remove the top layer, the epithelium, before applying the drops and UltraViolet. In Europe, the opinion is firmly in the "epi off" camp, so its a good thing to do some research on all of this!

Whether to HAVE CXL or not depends on how much, if at all, your KC is progressing. If it is not moving very fast, then I would wait until more centres in the US are offering it, so you have choice.

Lynn

Be aware that the United States is not the only jurisdiction that does not approve CXL as a standard treatment for KC. Although CXL is available in the UK on the National Health Service, it has yet to emerge from trials and is not yet universally available here.

Many patients in the UK do opt for the treatment as private (paying) patients, but I understand that health insurance companies do not usually approve of it as a standard treatment.

Lynn is right, the European approach is usually to remove the epithelium. In the United States, as I understand it, this is considered an unnecessary risk both to the health of the eye in the short term and for the long term with a possible implication with 'dry eye'.

All the best.

Andrew