UK Keratoconus Self-Help and Support Association

hi
i am 24 years old
about 8 years ago they told me i had Keratoconus on my left eye. i did nothing during these years because i was focusing only on my right eye with no trouble, but unfortunately my right eye is starting to weaken in the last 2 years, last week my doctor told me it may be a sign of Keratoconus (i hope not ) now i am realy scared and confused. i researched many websites about Keratoconus and i found very different information from site to site, i don't know which one is true and which is not. so i ask some of these questions here.
my doctor told me the only thing i can do for my left eye is corneal transplant , intacts or RGP Contact Lenses won't help .

1- if i did a corneal transplant , hopfuly successful , what type of correction i am going to need? i read on many websites that it varies , some people need no correction and some people will need contact lenses or glasses. but they did not say what type of contact lenses ? i hope it is soft contact lenses , or do they mean RGP Contact Lenses ?

2- on many websites they say only 15-20% will need a corneal transplant on one eye, less on both. does that mean if my right eye got Keratoconus ,more than 90% chances i will live the rest of my life with no need of corneal transplant on my right eye?

3- some websites says if you did a successful corneal transplant, it will never live longer than 10 years, other websites says it usualy lives to the rest of your life. which one is true? if the first one is the true (10 years) how is it like between corneal transplants? does that mean weak vision before you do the new corneal transplant or blindness?

4- after a full recovery of a corneal transplant (6months-1year) can i go on my life doing every thing? like sports,swiming,traveling or there going to be some restrictions??
also getting all sort of every type of cold , flu , allergy is this going to affect the eye or nothing more than on a regular eye?

5- i read some articles about "all laser corneal transplant" where they cut both corneas (the patient's and the donor's) usinig laser, which they say it will result in faster recovery and better vision. my doctor said it is still new, should i wait until the procedure come to my country or is it not worthwhile?

6- they say if you did the INTACS procedure you may still need contact lenses or glasses. again the same question , what type of contact lenses ? i hope it is soft contact lenses , or do they mean RGP Contact Lenses ?

7- in the recent years i got into a habit of setting very closely to the TV in a dark room (the distince between my eye and the TV is about 1-1.2 meter) is this habit going to damage my eye? the doctor said probably not, but i want to be sure.
i tried to go back 2 meters but i was very uncomfortable because of the glares of my left eye.

sorry for too many questions but i did not just came here and post these question, i did reasrch on many websites including this forum , but i still have these questions.
i have other questions but i think it will be too many in just one thread.

many thanks.

Hi TF5,
Welcome. Asking questions is the best way to deal with the complex issues related to KC. Without this website i would have been a wreck- because I only know 2 other person who has KC. Unfortuantely you may get some differing answers here too, but in the end you will just need to make you own decisions. I try:
1. the results after a transplant vary. I have been told to expect to still need to wear an RGP (but that it will be comfortable and manageable). My progress is good though, so i am secretly hoping to get away with glasses only. there is a chance that a year or two after the transplant a type of LASIK surgery can be done to correct your vision as well (but it is not always possible).
2. i don't know the statistics. there are a lot of variables, and it is better not to worry about the other eye until it becomes a problem.
3. i think that if the donor cornea is matched to your age (taken from someone with a similar age to you) then the intention is that it will last for the rest of your life
4. Yes, you can carry on doing normal things. there are some restrictions at first, but for example at 6 weeks I am already doing most things, except i am being careful to protect my eye from infection (so i am not yet getting it wet in 'dirty' water). I am driving and travelling and even going snow- skiing in 1 weeks time!
5. I cannot comment as it was not available in SA. I think it sounds great, but that having an experienced surgeon is probably more important than having a fancy machine. However, you should wait until you feel you cannot wait anymore.
6. I don't know.
7. I don't know either. Common sense says- if it doesn't hurt or give you a headache its okay.... but that's no doctor's opinion.
Good Luck
Melissa

Hi TF5

I can understand you worries and your wish to have certain questions answered, yet it is very difficult to give definitive answers to many of them as life simply isn't like that. For example, you are obviously concerned that soft lenses will be an option for you post graft. Well, they certainly ARE an option, however, what kind of soft lenses could be fitted depends on which country you are in as not all lenses are available in all countries-could you tell me where you live?

Keratoconus is usually active over around ten years, as an average guide. Thus, although your right eye may becoming affected it is quite likely it will not deteriorate as much as the left. Grafts vary in the time they "last" but I have seen many patients who have had them for 30 years so I think the statement that they will "never last more than ten years" is a bit inaccurate!

No-one can give you advice on whether to wait until a new procedure comes to your country - you have to take your doctor's advice on that one as he is the one who knows not just your eyes but also when this procedure is likely to come to your country.

Sitting close to the TV at around 1 m is not going to cause you any direct damage.

Sweet hello there and welcome to the site! I am sorry to hear about your KC and the worries that you are having. I know that you can get a lot of information and support here so please don't worry about asking questions.

A little about me, I'm 31, was diagnosed with KC at the age of 14 and have been wearing RGP lenses in my right eye since then. The left eye was too scarred but I finally decided to get a DALK (partial) graft two years ago.

Ok ... I will try and answer some of your questions!

1- if i did a corneal transplant , hopfuly successful , what type of correction i am going to need? i read on many websites that it varies , some people need no correction and some people will need contact lenses or glasses. but they did not say what type of contact lenses ? i hope it is soft contact lenses , or do they mean RGP Contact Lenses ?

--- I wear an RGP lens which I find quite comfortable. It has always been too painful to wear anything before but after the graft, with a flatter cornea it is much better.

2- on many websites they say only 15-20% will need a corneal transplant on one eye, less on both. does that mean if my right eye got Keratoconus ,more than 90% chances i will live the rest of my life with no need of corneal transplant on my right eye?

--- The vision in my right eye is excellent with a lens so I am hoping not to have to get surgery in the future. A lot of people only need a graft in one eye.

4- after a full recovery of a corneal transplant (6months-1year) can i go on my life doing every thing? like sports,swiming,traveling or there going to be some restrictions??
also getting all sort of every type of cold , flu , allergy is this going to affect the eye or nothing more than on a regular eye?

--- I do all the things I was able to do before having a graft. When I had my stitches removed I went abroad and jumped 50ft into a waterfall which I think worried my surgeon! But everything was fine. You just need to be careful when you are early post graft but when everything has healed over and all the stitches are removed it is hard to remember that you did have a graft!

5- i read some articles about "all laser corneal transplant" where they cut both corneas (the patient's and the donor's) usinig laser, which they say it will result in faster recovery and better vision. my doctor said it is still new, should i wait until the procedure come to my country or is it not worthwhile?

--- I have read about this new procedure but as you say it is very new so I don't know much about it. It sounds very exciting though as the idea of it being done by a laser is excellent! This would be a precise cut which wouldn't have to deal with surgeons ability.

6- they say if you did the INTACS procedure you may still need contact lenses or glasses. again the same question , what type of contact lenses ? i hope it is soft contact lenses , or do they mean RGP Contact Lenses ?

--- Intacs are used to flatten the cornea to make it easier to fit lenses. These could be soft lenses but it is up to the consultant seeing you as to what they suggest. Intacs were discussed in depth at our conference last summer. If you are on our mailing list we will send you a copy of the DVD when it is completed. To become a member just email Anne@keratoconus-group.org.uk She will send you loads of KC information and you will receive this group's newsletter.

Hoping this helps! Take care.

Hi and welcome!
To answer some of your questions:
1. I've recently had a graft. I was told at the appointment where I decided to go for the op that the rough percentages after grafts were: 60% of people end up wearing SOME SORT of contact lens, 30% wear glasses, and a lucky 10% get good enough vision not to bother with either.
Remember there are quite a few different types of lenses these days.
2. Needing grafts is, we're led to believe!! rare only a minority of people with KC gt that far (though you'll find more graftees on here, maybe, becuae people with more advanced KC and more problems with it may find the support group more supportive).
I haven't seen your eyes, nor the future in a crystal ball (!) so couldn't say what may happen to you.
3. I've met someone who had had both eyes grafted over 40 years ago. She didn't look old enough to have 40 year old grafts, but that's what she said!
One problem is not that grafts don't last longer than 10 years, but there is little data on old grafts - partly because people move house, get new jobs, see new doctors and opticians, and it is hard for the hospitals to keep in touch with everyone who once had a graft done by them to find out how they are getting on now.
Me, I've changed consultants since my graft already! - in 7 weeks. I must be screwing up every set of statistics going.
SO it could be that they normally survive a lot longer, but no-one has enough data to tell what the average is.
4. I've been told that whenever I go swimming now, I must wear water-tight swimming goggles so I get get sea water in my eye, with risk of bits of sand, seaweed, bacteria, etc. causing abrasion or infection. But no reason I shouldn't swim with goggles, nor do many other things. (Actually, there are some things I may not be able to do, but that's because of the anaesthetic, not the graft.)
It is always possible that a graft may start to reject, that is, your body's immune system may start trying to fight off the foreign imposter in your eye. Many people do have rejection episodes, and most of them can be sorted out if you get to the hospital and get the right eye drops in good time.
So if you want to go travelling, it's always a good idea to know where the nearest eye hospital of casualty is, just in case. And make sure you have some good health insurance cover. If you wanted to spend a year living with a remote tribe in a rain forest five days hike from the nearest settlement, there is a theoretical risk. Otherwise, it probably isn't a problem.
5. Waiting for the laser shapes? - well, I didn't. Probably better to fit the timing to the state of your eyesight, and how much you have to benefit (and/or lose).
6. don't know
7. probably not going to harm your eyes, but if you sit too close too long, you might start getting headaches from the glare and flicker.
Rosemary

Seven good questions with endless variations in replies; I hacve nothing to add to anything above except to underline just how much the experience of individuals varies.

As an example, one of my eyes needs glasses after a graft, but the other one will be fitted with a contact lens. the type of lens will depend on the sort that suits me best at the time of the fitting.

All the best

Andrew

many thanks to you all for your kind response...

Lynn White wrote:Hi TF5

I can understand you worries and your wish to have certain questions answered, yet it is very difficult to give definitive answers to many of them as life simply isn't like that. For example, you are obviously concerned that soft lenses will be an option for you post graft. Well, they certainly ARE an option, however, what kind of soft lenses could be fitted depends on which country you are in as not all lenses are available in all countries-could you tell me where you live?

.

Saudi Arabia,Riyadh
thanks..