Dear Cleopatra, I feel the same way as you about surgery. I had worn rgp corneals for over 20 years and also had a new lease of life when sclerals were recommended 3-4 years ago now. I now swap between sclerals and corneals - have you tried this?
My advice is that if you are coping fine with the sclerals, keep on with these for as long as you possibly can - there is no reason to have surgery if you can do everything you need to do in your daily life with the sclerals. I have had KC for over 25 years now and have seen a surgeon twice in that time (both different). Moorfields Eye Hospital recommended it the first time after about ten years due to the fact that my right eye had become extremely conical and was probably a case for a graft. However, the first thing the surgeon asked me was 'Are you coping with the rgp corneals and was KC stopping you doing anything?' My answer was YES and NO! He therefore advised that if that was the case, then he did not feel any need to start mucking around with my right eye and possibly causing problems that weren't there at the time, plus the fact that there is no guarantee as to how good your vision will be after the graft.
The second time I requested to see a surgeon myself about 2 years ago - this was when my eyes would not let me wear the rgp corneals any more; my life stopped and I wanted to look at all the options, including scleral lenses. The scleral lenses do not correct my vision quite as well as the corneals (this has since been corrected by wearing glasses as well), however, at the time the surgeon I saw explained all about the graft and also the fact that if there is a complete rejection and they have to do a second graft, the chances of rejection are even higher etc, etc. He recommended that a graft was the answer when ALL other options had been tried and you really cannot continue your life because nothing is working for you. I fully agree with this and have been lucky to have seen two surgeons with the same opinion. I am able to manage extremely well now with my sclerals and glasses and this also gives my eyes a rest so that I can again wear the corneals. Again, like you, I feel quite lucky that I do not experience some of the problems that other KC sufferers go through.
Don't be press-ganged into anything you don't agree with - find out as much as you can with regard to your own situation and definitely get a second opinion from another surgeon if you are not happy. There is no going back once you have started down the route of surgery. If you feel happy with how you are managing KC, then why open up a can of worms?
Do remember though, KC is different for every one of us so what works for one, may not work for another. Please find the best solution for you by ensuring you are armed with all the information and options that there are. If you have any more queries, let us know and keep us posted as to your progress with the surgeon. Good Luck! SUE
Quicktopic posts: Aug 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Carole Woodruff
Ulka
I don't know how much a transplant would cost in th UK but if I were you I would exhust all options. Sue and I see the same scleral lens man and I suggest you e-mail her for info.
Cleopatra, I totally agree with everything Sue has said. I've had 2 grafts in my left eye. I am 100% convinced the second one could have been avoided if I had known about this site and scleral lenses which I am now wearing. Funnily enough I find the scleral in my right non-grafted eye far more comfortable than in the grafted eye. Is there anyone out there who has similar experiences?
Sue, a question for you. Do your corneal lenses feel uncomfortable or has the sight changed after inserting them following wearing your sclerals for a long time? At the moment I am finding that my left eye feels stingy once I have removed the scleral lens. I feel fatigue may be one of the causes of the problem because for some reason I'm not sleeping well.
Now I've got used to 6/6 vision in my grafted eye with the scleral I don't think I could drive with just the right corneal now like I was doing before.
Sarah, you asked about rejection. The signs and symptoms are redness, watery eye and pain. As John said the treatment is lots of steroid drops. You are usually admitted to hospital for hourly drops (like John's recent experience). If they don't work then there is another drug called cyclosporin A which can be administered. But if I were you I wouldn't worry too much about rejection and just stay focused and positive about the op you have just had. Good luck.
John, I hope things are okay now following your recent trauma.
Carole.
I don't know how much a transplant would cost in th UK but if I were you I would exhust all options. Sue and I see the same scleral lens man and I suggest you e-mail her for info.
Cleopatra, I totally agree with everything Sue has said. I've had 2 grafts in my left eye. I am 100% convinced the second one could have been avoided if I had known about this site and scleral lenses which I am now wearing. Funnily enough I find the scleral in my right non-grafted eye far more comfortable than in the grafted eye. Is there anyone out there who has similar experiences?
Sue, a question for you. Do your corneal lenses feel uncomfortable or has the sight changed after inserting them following wearing your sclerals for a long time? At the moment I am finding that my left eye feels stingy once I have removed the scleral lens. I feel fatigue may be one of the causes of the problem because for some reason I'm not sleeping well.
Now I've got used to 6/6 vision in my grafted eye with the scleral I don't think I could drive with just the right corneal now like I was doing before.
Sarah, you asked about rejection. The signs and symptoms are redness, watery eye and pain. As John said the treatment is lots of steroid drops. You are usually admitted to hospital for hourly drops (like John's recent experience). If they don't work then there is another drug called cyclosporin A which can be administered. But if I were you I wouldn't worry too much about rejection and just stay focused and positive about the op you have just had. Good luck.
John, I hope things are okay now following your recent trauma.
Carole.
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sarah marsh
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Sue Ingram
Hi Carole (895), I am fortunate that I have not really experienced any problems swapping from scleral lenses to corneal lenses, however long I have had the scleral lenses in (the only time I do is if I wear piggy-back scleral lenses with disposable lenses underneath - for some reason, I cannot wear the corneal lenses afterwards as my eyes hurt when I take the piggy-back sclerals out; they don't hurt all the time I am wearing them!).
But with the ordinary sclerals, I can swap to the corneals and the vision and comfort are the same as normal. However, I do have a funny thing in that I cannot wear my corneals first thing in the morning and then swap to the sclerals half way through the day, as my left eye hurts too much with the corneal if I try to wear it from when I wake up. But, if I wear the sclerals first in the morning and for the first half of the day, then the corneals are no problem at all; it appears that the sclerals seem to help my eyes wear the corneals - very strange! We are always coming back to the same thing again, aren't we? - KC and managing it seem to be totally individual!
My eyes are definitely not so tolerant of any lenses if I have not had many hours sleep so maybe it is this which is not helping your problem. Not sure where you live but you could always come along for a massage to help you destress, relax and help with your sleep! Hope you get your lenses sorted out - this is often a case of peserverence. Take care. SUE
But with the ordinary sclerals, I can swap to the corneals and the vision and comfort are the same as normal. However, I do have a funny thing in that I cannot wear my corneals first thing in the morning and then swap to the sclerals half way through the day, as my left eye hurts too much with the corneal if I try to wear it from when I wake up. But, if I wear the sclerals first in the morning and for the first half of the day, then the corneals are no problem at all; it appears that the sclerals seem to help my eyes wear the corneals - very strange! We are always coming back to the same thing again, aren't we? - KC and managing it seem to be totally individual!
My eyes are definitely not so tolerant of any lenses if I have not had many hours sleep so maybe it is this which is not helping your problem. Not sure where you live but you could always come along for a massage to help you destress, relax and help with your sleep! Hope you get your lenses sorted out - this is often a case of peserverence. Take care. SUE
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John Smith
Hello all,
Ulka, if you can get treated in the UK under the NHS, then I imagine that a transplant wouldn't cost you a penny (apart from prescription charges for the steroids - maybe £50 total?).
Doing it privately means paying the surgeon, anaesthetist and the hospital - a bill that in my case came in at about £3000. Then you have to pay for each aftercare consultation - £70 in my case, and on private prescriptions, the drugs may cost 50% more. Luckily, my employer's health insurance paid, but it give you an idea of the costs.
Very glad to hear that your "burning" has stopped, Sarah. Even so, please mention the incident to the consultant on your next visit. Even if us laymen think it is irrelevant, these little things can mean a lot to them! Good to see that you're thinking positively too. As long as it is treated promptly, a rejection episode doesn't have to mean being hospitalised again. Although I was told I might need to be, I was responding well enough to the hourly-when-awake steroids to avoid it.
As for me, the graft seems to have settled again, but the clock has been reset on the incident-free year before operating on my left eye, so my surgeon wanted me to get my RGP prescription checked out, with the possibility of moving to sclerals. So she sent me to see Dr. Moodaley.
Dr. Moodaley spent a nice long time (well over an hour!) trying differnet combinations, and eventually settled on a less-than-stable RGP lens which got me to line 6 on the chart. Previously, I've managed the top line alone. and the 2nd line when wearing glasses too. I was flabbergasted. The bad news though is that this lens will probably keep falling out. The answer: a trip to Moorfields to see Ken and a scleral. BUPA won't cover this, and the "real" cost of the scleral itself is about £800 each!
As far as the group is concerned, Dr. Moodaley was even informing me of our existance - she seems to be the first person I've come across who's actively promoting the group. Well done to her!
John.
< replied-to message removed by QT >
Ulka, if you can get treated in the UK under the NHS, then I imagine that a transplant wouldn't cost you a penny (apart from prescription charges for the steroids - maybe £50 total?).
Doing it privately means paying the surgeon, anaesthetist and the hospital - a bill that in my case came in at about £3000. Then you have to pay for each aftercare consultation - £70 in my case, and on private prescriptions, the drugs may cost 50% more. Luckily, my employer's health insurance paid, but it give you an idea of the costs.
Very glad to hear that your "burning" has stopped, Sarah. Even so, please mention the incident to the consultant on your next visit. Even if us laymen think it is irrelevant, these little things can mean a lot to them! Good to see that you're thinking positively too. As long as it is treated promptly, a rejection episode doesn't have to mean being hospitalised again. Although I was told I might need to be, I was responding well enough to the hourly-when-awake steroids to avoid it.
As for me, the graft seems to have settled again, but the clock has been reset on the incident-free year before operating on my left eye, so my surgeon wanted me to get my RGP prescription checked out, with the possibility of moving to sclerals. So she sent me to see Dr. Moodaley.
Dr. Moodaley spent a nice long time (well over an hour!) trying differnet combinations, and eventually settled on a less-than-stable RGP lens which got me to line 6 on the chart. Previously, I've managed the top line alone. and the 2nd line when wearing glasses too. I was flabbergasted. The bad news though is that this lens will probably keep falling out. The answer: a trip to Moorfields to see Ken and a scleral. BUPA won't cover this, and the "real" cost of the scleral itself is about £800 each!
As far as the group is concerned, Dr. Moodaley was even informing me of our existance - she seems to be the first person I've come across who's actively promoting the group. Well done to her!
John.
< replied-to message removed by QT >
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