New and in need of advice

[Vikki Kelly]

Hi everyone,

I was diagnosed with keratoconus about a year and a half ago, but have only recently joined this forum. Reading the experiences of everyone else has been immensely comforting, and I've gained a lot of support from knowing that I'm not alone and that there are ways to cope with this condition.

I have a question that I wonder if anyone can help me with. My keratoconus seems to be getting progressively worse as I can no longer see particularly well with glasses (despite getting new lenses in my glasses every few months) and so therefore have to rely on the hard lenses. Recently I'm having more and more difficulty in tolerating the hard lenses and after an hour or so my eyes start burning so much that I have to remove them. I have regular check ups at Moorfields and they say the lenses fit fine but my eyes seem constantly bloodshot. Is this a common experience? If so, has anyone found a successful way of managing the discomfort? Also, can anyone offer any advice about kerasoft lenses - Are they suitable for everyone or just certain prescriptions? Do Moorfields prescribe them or would I need to consult someone else about suitability?

Many thanks

Vikki

[timmytim7]

hi vikki,

i'm about to get a kerasoft lens on the nhs so i should imagine that moorfields can offer them as well. i'm sure they must offer piggy back, scleral and all sorts of other lenses as well as they are eye specialists. just ask them to fit you with a different sort of lens and see if they are more comfortable.

moorfields are running trials on collagen cross-linking as well which may interest you.

best of luck,


tim

[Andrew MacLean]

Vikki

Welcome to the forum!

I am afraid that Keratoconus does progress, but in most cases and for reasons that nobody really understands it then stops progressing. It may be that you have now arrived at the point where you need to be fitted with lenses. for the majority of people with KC the favoured option is still Rigid Gas Permeable Corneal lenses (PGP's). I wore different sorts of RGP corneal lenses for well over twenty years until I needed a different sort of lens. Various hybrid and soft lenses were tried, but the lens on which they eventually settled was a scleral. In all the years that I was wearing lenses the scleral was my favourite.

Each of us is different, and fitting lenses to eyes with KC demands a deal of skill and experience on the part of the practitioner. Not all high street optometrists have either the time or the skill to fit lenses to KC eyes. In aberdeen I was referred to a high street optometrist used by the eye infirmary for KC patients. Thy guy there was wonderful, and when i moved to Glasgow I was seen by the hospital contact lens clinic where the staff were great.

All the best with your lens fitting. You may have a fixed idea about what you want, but allow the optometrist to advise you on what would be best for your eyes. After all the optometrist is looking at your eyes and can see your particular case of KC; nobody on the forum has this advantage.

Yours aye

Andrew

[Lynn White]

Hi Vikki!

OKay..... it is an unfortunate fact that people with keratoconus have very sensitive eyes. This often means that although hard lenses (or RGPs) give great vision, they are often hard to tolerate. So in answer to that question, yes lots of people with KC have the same problem. So it is relatively common for optometrists to say "The lens fits great!" - which it does! - but for the patient to say ...well actually this really hurts!!

At this stage, you have to explain to the optometrist looking after you that the wearing time is really nowhere near long enough for you to be able to function properly. Other options can then be looked at.

KeraSoft is obviously one of those options but only the optometrist looking after you can say whether the lens is suitable for you, vision wise. Quite often, if you get good vision with RGPs then piggy backing over a thin soft lens can be the answer, at least for a while.

Moorfields are able to prescribe anything! There are lots of options out there but it is hard to be more specific as each individual is different. The best approach would be to explain at your next visit (or even try to get an earlier appointment) that you are simply NOT coping and you want to explore other alternatives.

You can actually be fitted with anything you want on the High Street BUT only a small number of optometrists have a contract to fit hospital contact lenses, so the cost will be MUCH higher than staying within the NHS.

Hope this helps!

[Vikki Kelly]

Thank you so much for your comments, I really appreciate you taking the time to reply. I've contacted Moorfields to ask for an appointment to discuss different lens options and now based on your suggestions I feel much better informed.

Thanks again!

Vikki

[Zeus]

Hello Vikky Kelly,

I wish you will see my message.I am really disappointed that why at the previous replies no one told you how you will stop the progression of the KC.At the moorfields you are going the doctor hasnt tell you about crosslinking?i am so frustrated girl.Please find a doctor that will explain to you how you will halt/stop/freeze the progression of the KC.

It is wrong that they provide you stupid lenses and NOT the TREAMENT to save your vision from getting worse.As i am reading a few posts i cant hold myself for not answering and telling the global rule that all Europe and the world seems to know it.Collagen crosslinking or else CXL is strengthening the cornea and stop the stupid KC.

I wish that you will find a doctor that can really help you and not giving you lenses or whatever.This is rediculous.

[Lynn White]

Zeus,

If you had read the thread properly, you would have seen that Timmytim7 already mentioned to her that Moorfields are trialling CXL. As I explained before, the procedure has to go through trials by law before it is offered as a general treatment. Its frustrating, yes, when you know other countries have been performing it for some time with apparent success. But really you know, there can be long term problems with any treatment, as I keep saying. I have a few patients who had the first laser surgery done in Portugal around 10 years or more ago and who now have terrible vision and scarred corneas. Modern laser surgery is very much better but this knowledge was gained through the bad results as well as the good. This is why hospitals are so cautious. If they just went ahead and performed procedures just because it had had success elsewhere and it went wrong, then the hospitals would be liable for a huge legal action against them.

Again, I will repeat, CXL is available to anyone who can pay for it but if you cannot afford private fees, then you have to work within the system of the NHS.

I do understand your frustration, but it is not helpful to call current treatment methods "stupid" as you are then implying that members here are "stupid" for not taking your advice and doctors "stupid" for not simply going ahead and doing CXL on everyone. CXL, as I said in the other thread, is most likely to become a standard treatment at some point. However, the good thing about lenses is that if they cause a problem, they can be taken out and left out. If surgery causes a problem, there is no going back. We do not yet know the consequences of CXL on the eye after 30, 40 or 50 years. This is why medical people are cautious.

It is little use shouting at people here - they actually have no control over hospital policies. In fact it is little use shouting at the medical profession either, as people are often more persuaded by reasonable discussion rather than someone telling them they are stupid and wrong.

To get your message across, you need to be also sympathetic and understanding of the other person's position.

[Zeus]

Hello Lynn,

I am not selling anything woman.I just saying my experience and if someone has read about the treatments options about KC,IT IS OBVIOUS THAT CROSSLINKING is the only one for stopping/halting/progression of the KC disease.Thats it.No other words.What are you saying about lasers etc etc?Are you try to misinform people in here?Stop doing and mentioning occasions of other surgeries that have nothing to do with keratoconus.It is unfair.We are losing the point here.

If this situation is kept going i will go to Germany and buy i r know 5 Crosslinking Machines and i am going to donate them to London hospitals.Crosslinking is not NEW.How many times i am going to say it?Please if you are not informing the people about the real thing and talking about things that arent treatments are you going to take responsibility for the progression of the KC because you you have misinformed?

Read about the collagen crosslinkiing Congrresses to understand more.

All the best,

[Andrew MacLean]

It is certainly obvious that CXL deserves careful attention and careful evaluation. In the United States and in the different jurisdictions in the United Kingdom it is receiving this kind of evaluation, and it is also obvious that some jurisdictions in the EU have already authorized this procedure for use in the treatment of some cases of Keratoconus.

People who have to make difficult decisions about their eye care, and about their future sight, should weigh all the evidence, take advice from professional eye care specialists, research and enquire as widely as they can and then decide what action to take.

I have stated in this forum many times that, if CXL had been available when I still had 400 mircons of my own corneas, then I should certainly have thought it worth trying. There is a word in Greek that transliterates as panakeia but which is more normally spelt 'panacea'. It literally means 'all-healing', although can be rendered as "cure all". We all want the panacea for Keratoconus, but the road to medical disaster has always been paved by an earnest desire to find the one thing that will solve an intractable problem.

So, is CXL the panacea for KC? For some people it may indeed be the one treatment that will arrest the development of their condition. For others, there will still be other therapies and the hope of another development still to come.

I am sorry that we have come to the point here when professionals who work hard to produce a way of managing our condition can be abused in the open forum and want to assure Lynne that her advice and contributions will always be welcome by most of us.

Andrew

[Lynn White]

Thank you Andrew!

Zeus, I am not here to get into an argument and I was thinking of just leaving your post unanswered, as this is going to degenerate otherwise. However, I will come back and answer you as I do think you are missing several points yourself here:

1. As a professional on a open forum, I cannot come out and say one particular therapy is better than another, even if I thought it. One always has to give balanced information and that is what I have been trying to do.

2. You keep missing the point that for many people, CXL has turned up too late. Despite what you say, and with the greatest of respect, there are people with KC who have dense, full thickness central scarring which no amount of CXL would restore vision because they still would not see through the scarring.

3. Your experience appears to be personal. When I say I have seen bad results with laser, I am talking about patients I have actually seen. This is not misinforming people, it is explaining the development of a now successful procedure. In a completely different field, there were a good many people who died during the pioneering time of heart transplant surgery. That didn't mean the final procedure was flawed, it was a learning curve and people now owe their lives to this procedure. I was merely pointing out that although laser is now a well tried and trusted procedure, it wasn't so at first.

4. I do understand entirely how CXL works. I have consistently said I think this may well become the accepted way of treatment. I merely keep pointing out that even if you gave a dozen machines to London hospitals, it would not affect the speed at which the procedure is being currently trialled in this country. It can be frustrating but in this country at least, we are haunted by the thalidomide disaster which affected so many children. This was because of flaws in the way clinical trials were conducted and was responsible for much of the caution we now see in looking at new technology.

5. I keep replying to you because you yourself are misinforming people. You are not a professional, have not spent years dealing with people with this condition and have not seen it in all its various forms. Yes, I know how long CXL has been out there. Yes, I know the possibilities it can hold out - especially for those with early KC. But I also know there are many people for whom this will not restore what vision they have lost through advanced KC. For those people you are unfairly raising hopes that they can be "cured". CXL CANNOT help every single person who has KC to see normally. It may indeed stop progression, but it may not restore normal vision and if corneas are very thin, then many surgeons are not happy in carrying out PRK afterwards.

6. In conclusion, I am NOT passing judgement on CXL, I merely saying that with the best will in the world, it is not freely available here on the NHS. It is available privately in the UK by many excellent surgeons and if anyone feels they would like to get an opinion to see if this procedure is suitable for them, then they can either consult with one of them or try and get included in the current NHS trials.

Andrew gave a perfectly balanced and reasonable answer to you - history has taught us that there almost never is a panacea for any condition and indeed history also teaches us that what is hailed as cure this year may in fact be totally the opposite next year - witness the totally conflicting current advice on what is and isn't good for people to eat! And as human beings have been eating for a considerably long time and you would have thought we would have licked this particular issue by now!!

I wish you well and as I said, I do understand your enthusiasm for this exciting new technology. Let us all hope it fulfills its promise.