New member, my KC story so far..

[kaz]

Before I begin I would like to say hello to all members. I may not know anyone with KC but atleast this forum allows us to share our experiences which is an extremely usefull device.

I am aged 20 and was diagnosed with KC nearly 2 years ago. I first noticed my vision getting worse when I was struggling to read road signs so decided to go for an eye test and was sent home with my spectacles being powered up and nothing being mentioned at all about the high levels of astigmatism. My vision got worse again within months and this is when the optom referred me to the Leicester Royal Infirmary (LRI) but didn't bother to explain why. I was told I had KC and that I would need to wear contacts and then was sent home with an appointment in 4 months time. In the mean time I carried on with life not knowing that I was slowly being robbed of my eye sight.

I am currently at university and have just completed my second year. I also play cricket at county level. My KC is now at an advanced stage and has progressed rapidly and I have been told I will most probably need to start thinking about a transplant within the next six months on my left eye. I have tried soft lenses to no avail, and am now waiting for RGP's to be fitted.

The purpose of writing this post was to ask a few questions and to share my frustration on certain issues that have angered me as the consultant I am under is never available and the optoms I have dealt with don't know anything. Firstly I think that all optoms need to have more knowledge of KC so that cases can be detected earlier leaving more treatment options open. If my optom had referred me earlier as I had high astigmatism maybe I would be in a better situation today? Secondly, the optom at the LRI didn't bother to explain what KC was and how it could have an affect on my life. The least she could have done was told me to research it! I was a teenager and was busy enjoying my life not having time to worry about a problem I had no knowledge about. Finally, and most significantly when I was diagnosed I had mild KC and had appointments every 6 months or so. During the past year intacts have been available at the LRI yet they didn't bother telling my about it when I would have been an ideal candidate, but rather I had to wait till my next appointment 8 months later, and then when I asked I was told that my corneas were now too steep!

Since the age of 13 i have been playing cricket and have made many sacrifices to get where I am today. Before KC I would say I had a certain future playing professionally however now I am not so sure. Having KC has been an inconvinience and nothing more and I have never let it get me down. However the thing that upsets me the most is that I feel I have been let down by the people who I was looking to guide me and now if I have to have a transplant, 12-18 months recovery time will end any hopes of me continuing to play cricket.

Anyway enough of the emotional stuff, time for some questions!

1) Has anyone with advanced KC had C3R done and what were the results?

2) Does anyone have a clue when we are likely to get the new intralse laser to cut corneas which is being used in the USA for corneal transplants?

3) Has anyone with advanced KC had success with scleral lenses and avoided a graft?

4) Any recommendations to see someone privately who may be able to help me?

Many thanks in advance for any help you may be able to offer.

kaz

[Eddie S]

Hi Kaz,

Welcome to the site from a fellow Leics KC'er! I also attend LRI for my KC.

Apologies, I dont consider my KC to be 'advanced' and so I cant advise on the majority of your questions.

Have a look at this page though where you'll find some opticians in the local area who have experience with Keratoconus and can see you independently of the hospital...
http://www.keratoconus-group.org.uk/optoms/index.php

I think most of us here have been through the problems of lack of information, especially under the NHS where there is so much emphasis placed on the number of patients seen in a given time.

I've found this site to be a great resource - you've come to the right place - and i'm sure you'll get a lot of your questions answered. I'd also recommend joining as a full member which will you'll some useful info posted out to you.

Don't give up on lenses just yet - soft lenses (used on their own) rarely have any impact on your sight when KC is involved and there are a number of different types of rigid lens that can be used to help you. A graft or intacs is not the only option.

Unfortunately each and every one of us with KC has it differently and so what works for me wont necessarily work for you and you may need to go through a number of lenses before you find the right ones for you. I wear lenses and I am legal to drive - without them I can just about see a Snellen chart!

Hope this helps. PM me if you want to talk directly.

Regardless, welcome and good luck with the cricket.


Ed

[JoeK]

Hi Kaz, sorry to hear about your poor experiences by medical staff when first being diagnosed. i too had a similar experience when i was referred to the eye hospital the appointment took 4 months to come and the consultant said i had keratoconus and i should make appointment to see another consultant who will fit me with RGPs. When i tried to enquire about what Keratocnous was he wouldnt discuss and was in a hurry to see the next patient.

This was 10 years ago and luckily these days you have access to this wonderful forum and I can see from your post that you have managed to get alot of information about the condition.

With regards to cricket, i havent had a problem playing over the 10 years down to vision though age is setting in now! i'm sure once you have been fitted with RGPs you will continue to enjoy the wonderful game.

All the best

[Anne Klepacz]

Hello Kaz and welcome to the forum.
I'm sorry you are one of the small minority of people with KC who find it progresses rapidly. As I'm sure you've discovered, KC is very varied and unpredictable - for many it does stay mild and doesn't ever get to the stage of having an impact on their lives. Unfortunately, those are the people who tend not to post on forums like these, so it's easy for the newly diagnosed to get the idea that KC is always a problem.
But of course, if it does progress quickly, and especially in teenage years when it can impact on studying, exams, career choices and confidence, then KC can be hard to deal with and is bound to have an emotional effect, which isn't always recognised or picked up by hospital staff. So I'm sure you'll find lots of people who will identify with what you're saying on this forum.
At our conference on Saturday, we had a presentation from a consultant about Intacs, C3R and the use of intralase laser in transplant surgery (we'll be producing a DVD of this to send to all our mailing list members later this year). Perhaps the most important point he made is that everyone with KC is different, and an option that works for one person won't necessarily work for another. He also stressed that with the newest treatments, it takes time for surgeons to be trained in the new techniques and to feel confident in using them. I don't know the position at your hospital, but I know some hospitals are carrying out limited trials on Intacs in order to gain that expertise. New guidance on Intacs from NICE coming out this month should mean that they will become more generally available, but it's bound to take time, and, more importantly, won't be the answer for everyone.
I'm sure other forum users will come back with answers to your questions - we certainly have quite a few members who have had very good results with scleral lenses and have avoided a graft for decades using them.
If you PM me or e-mail me at anne@keratoconus-group.org.uk with your postal address, I can send you the literature we have on KC and you'll also be sure of getting our latest conference DVD when it comes out. In the meantime, good luck with your search for the best option for you.
Anne

[Karl R]

Hi Kaz,

Sorry to hear of your treatment experience.

Unfortunately with INTACS it is not suitable for every KC patient. Even in mild KC patients, which is is one of the indicators for the procedure, it is probable that there will be those who are not suited to the procedure as it an be influenced by the following factors amongst others.

Degree of KC
Steepness of cornea
Corneal thickness
Efficacy likelihood

As Anne has said, until the NICE guidance is published later this month, very few NHS hospitals will be prepared to offer this treatment as a matter of course. At the moment each qualified surgeon has to argue to get the funding from the trust, and even when funding is made available it may only cover a limited number of operations to be performed.

After the operation there is the possibility that it would not be classed as a success as the outcome of the procedure can and will vary from patient to patient, however I would agree that it may have been an option that should have been given due consideration, even if it transpired that ultimately it would not have been suitable for you.

Another point that I agree wholeheartedly on is the lack of knowledge amongst healthcare professionals, there have been many I have come across over the past 20 months who do not know what KC is or how to spot it, let alone have any knowledge of INTACS. Fortunately these are becoming the exception rather than the norm as KC becomes more widely acknowledged.

I wish you all the best in your future treatment and studies. You will come out on the other side as a much stronger character, and soon learn to adapt to KC.

Don't let KC manage your life, let your life manage your KC

[GarethB]

The issue with healthcare professionals learning about KC is they need to see patienst with the condition.

The University Hospital I attend love it when I go, because they know I will consent to let trainee doctors and trainee opticians have a look at my eyes.

I am amazed at how few patients will let trainees near them, but how else will they learn which was also raised at the confrence.

[Karl R]

I'll second your comments Gareth, each follow up appointment I make it know that as many students or qualified staff who don't know about the procedure, as they can find may come and examine me.

Shouldn't have to be that way but alas it is.

[rosemary johnson]

Hallo Kaz,
Welcome tothe forums.
To answer your questions:
1. I haven't personally
2. one of the speakers last Saturday is now using the intralase laser and sounded very keen on it. He's based in east grinstead.
3. I've been wearing scleral lenses for, oh, about 32 years now. The left one is still going on OK; I've been piggybacking (ie a soft lens under the scleral) inthe right eye for the last couple of years, which improves the comfort butstill leaves many ghost images and makes the woorl look a bit surreal. I haven'thad a graft yet, but think I'm rapidly approaching one.
4. Do idea inthe Leicestershire area. "The person who is "Mr Sclerals" is Ken Pullum, who works out of Moorfields, Oxford (Eye Hospital now at the John Radcliffe 2), Hertford and maybe elsewhere too.


An observation: you talk of "advanced", but there is also a question of "how advanced is advanced?" It sounds like yours has been coming up fastt, but if you have been in soft lenses so far and only just being lined up to try hard lenses (I presume corneal ones so far?? - "RGP" is actual a type of plastic, and scleral lenses are also made of RGP plastic too, these days), then it sounds as if your KC is not yet that advanced in the overall general pattern.
THough maybe they are thnking that a corneal lens would noot be "fittable" weither now or very soon? - that is certainly moe advanced than one that can wear corneal lenses, though it's possible sclerals may do the trick for many more years.
4 months to get a hospital appointment? - hate to sya this, but that also is pretty good, compared to "par for the course".
Rosemary

[GarethB]

The Scleral expert I know of is Saresh and he has a clinic in University Hospital Walsgrave, Coventry and I think he has one at the Birmingham Eye Unit.

A sign I have been seeing the people who care for my eyes so long, I only know them by their first name. Plus in Coventry we are introduced to most of the people who care for us with their first name. Can only recall a few of the doctors being referd to by their surname. It is so informal it really does help you as a patient to relax.

[kaz]

Thank you all for your input. Ed I totally agree with your comment mate about about the NHS placing so much emphasis on the number of patients seen in a given time. I usually plan to ask a few questions at the end of my appointment but usually get to ask one, then am hurried out of the clinic!

JoeK I have many problems whilst playing cricket. Firstly the damn lens sometimes won't stay in (having hay fever doesn't help). Due to light sensitivity I struggle to sometimes catch the ball because am blinded by the sun. Finally unlike a football match a cricket game will go on all day so lens wear time is also an issue!

Anne you seem to know what your on about so will have to contact you about that DVD.

Karl R after reading your post am not as angry as I was before about the INTACTS issue so thanks for that, will try not to jump to conclusions next time.

GarethB I totally agree with your point about trainess learning about KC. On my last visit I consented to a student having a look at my eyes and encourage others to do so. By doing this in future more optoms will take an interest and thus we shall hopefully have more specialists as at the moment there a few and far between. Also the more people that know about the condition the better as it will be easier to explain to family, work, uni etc.

Rosemary I am hoping to pay a visit to Ken Pullum if the RGP's am due to be fitted with are not adequate. I have heard many positive things about him. In relation to you wearing scleral lenses, my optom didn't recommend them due to some oxygen issue, have you had any problems with them?