Carole Woodruff
I don't really know why 2nd grafts are not being offered to me.I have seen 2 specialists in Moorfields and Canterbury but neither are willing to take the risk. Maybe it is because my first grafts were done when I was 12 and 13 which is now over 30yrs ago.I am also quite allergic to some drugs and worries have been voiced re-rejection problems.Perhaps I should be grateful with what sight I have rather than risk loosing it.I would be interested in anything new you find out from america though.
My first grafts were done as quite a risk anyway as I also suffered from severe eczema at the time and I had to spend ages in a skin hospital to stablise my skin before being operated on.My mother went to so many specialists to find one willing to take the risk.The ops were eventually done in Birmingham by Michael Roper-Hall.Has anyone else come across him.He was quite a well respested surgeon at that time but I should think he has retired now.Post op. I was forever being exhibited(or rather my eyes were!),but at least it got me out of school.
How are you getting on now? How long will the blurring take to clear?Post op care must have changed since mine were done.
Keep in touch.Elaine
Quicktopic posts: May 2001
Moderators: Anne Klepacz, John Smith, Sweet
-
elaine -----dover
-
alan from Amsterdam
Dear Elaine in Dover,
The Dutch Ken whose name is Charles, is a young, totally dedicated OD. He has about 500 KC patients, 300 of which use sclerals. Charles recommends a very unconventional cleaning regime for sclerals - clean lenses with a no-name brand 70% alcohol solution and leave them dry overnight - no soaking at all! I've tried conventional cleaning/soaking systems like SoloCare but they don't seem to make any difference. Eleven hours wear time sounds great, but not when the last 4 hours are pure hell. My eyes actually seem to generate heat to the extent that my sunglasses fog up, even in hot weather! In answer to your second question, I am extremely fortunate in that I have quite severe KC in the left eye and not so bad in the right. However, my right eye has severe astigmatism. In any case, I'm not a transplant candidate yet.
The Dutch Ken whose name is Charles, is a young, totally dedicated OD. He has about 500 KC patients, 300 of which use sclerals. Charles recommends a very unconventional cleaning regime for sclerals - clean lenses with a no-name brand 70% alcohol solution and leave them dry overnight - no soaking at all! I've tried conventional cleaning/soaking systems like SoloCare but they don't seem to make any difference. Eleven hours wear time sounds great, but not when the last 4 hours are pure hell. My eyes actually seem to generate heat to the extent that my sunglasses fog up, even in hot weather! In answer to your second question, I am extremely fortunate in that I have quite severe KC in the left eye and not so bad in the right. However, my right eye has severe astigmatism. In any case, I'm not a transplant candidate yet.
-
elaine
Alan
I clean my lenses with miraflow then also leave them to dry. This is what Ken recogmends.Do you need to wear your lens for 11 hrs?Maybe 2 sessions of 5 with an hour rest would help.Your Charles sounds almost as much a treasure as our Ken perhaps we could get them together for a party!
I have always wanted to go to Holland but travelling alone with bad sight is worrying that sounds pathetic as people do far more daring things.I need an extended ladder to see the departure board at train stations! There is never anyone around to help are Dutch stations any better? And folk regard you as daft if you ask a simple question like what time is the next train etc.
If your astigmatism is so bad why has a graft not been suggested? I've been told at Moorfields that I have the worst post-op. astigmatism in Europe (is that right Ken?) but maybe someone has beaten me by now!
Keep in touch.elaine
I clean my lenses with miraflow then also leave them to dry. This is what Ken recogmends.Do you need to wear your lens for 11 hrs?Maybe 2 sessions of 5 with an hour rest would help.Your Charles sounds almost as much a treasure as our Ken perhaps we could get them together for a party!
I have always wanted to go to Holland but travelling alone with bad sight is worrying that sounds pathetic as people do far more daring things.I need an extended ladder to see the departure board at train stations! There is never anyone around to help are Dutch stations any better? And folk regard you as daft if you ask a simple question like what time is the next train etc.
If your astigmatism is so bad why has a graft not been suggested? I've been told at Moorfields that I have the worst post-op. astigmatism in Europe (is that right Ken?) but maybe someone has beaten me by now!
Keep in touch.elaine
-
Ken Pullum
Grafts and regrafts
Elaine, Justine and others considering a transplant.
I would say again from the outset that most transplants have a satisfactory outcome, but there has to be a good reason for going ahead in the first place.
Elaine Â… your transplant must be described as an unqualified success since it has survived so long. You do have a fairly chunky astigmatism, but if the corrected vision (acuity) with specs or CLs is good, that must be the principal criterion for success. If CL wear is difficult, I can understand that it rather takes the icing off the cake, although, I expect you may not necessarily perceive transplants or CLs as either cake or icing. I know quite a few people whose transplant has lasted many years, but the truth is that there are very few studies with information over ten years post op. Up to ten years, the survival is very good for transplants if keratoconus is the underlying pathology, with most studies describing over 95% survival. You are one of the field leaders for transplant longevity at 30 years, but quite a few have left you behind for astigmatism. You were saying that no-one seems to want to take the risk, but it is worth remembering that it is not the surgeon but the patient who is taking the real risk, since it is the patient's eye being operated on. The reason for holding back on a second transplant is simply that the concensus of opinion has always been that there is a greater chance of rejection.
Justine, I am sad to read that you are having a bad time with yours. You have drawn the short straw, but you mustn’t give up. Even though subsequent transplants are generally thought to carry a higher risk, it is also true that a third or even a fourth transplants have successfully taken following rejection of the earlier ones. The keratoconus group will be rooting for you.
I think the decision to go ahead or not is a very difficult one. If the acuity is good and CL wear is no problem, there is no decision to make. However, I know of people who have been offered transplants when the CL acuity has been sufficient to drive a car with all day wearing time of 40 years standing, so it clear that there is some alternative opinions.
KP
Elaine, Justine and others considering a transplant.
I would say again from the outset that most transplants have a satisfactory outcome, but there has to be a good reason for going ahead in the first place.
Elaine Â… your transplant must be described as an unqualified success since it has survived so long. You do have a fairly chunky astigmatism, but if the corrected vision (acuity) with specs or CLs is good, that must be the principal criterion for success. If CL wear is difficult, I can understand that it rather takes the icing off the cake, although, I expect you may not necessarily perceive transplants or CLs as either cake or icing. I know quite a few people whose transplant has lasted many years, but the truth is that there are very few studies with information over ten years post op. Up to ten years, the survival is very good for transplants if keratoconus is the underlying pathology, with most studies describing over 95% survival. You are one of the field leaders for transplant longevity at 30 years, but quite a few have left you behind for astigmatism. You were saying that no-one seems to want to take the risk, but it is worth remembering that it is not the surgeon but the patient who is taking the real risk, since it is the patient's eye being operated on. The reason for holding back on a second transplant is simply that the concensus of opinion has always been that there is a greater chance of rejection.
Justine, I am sad to read that you are having a bad time with yours. You have drawn the short straw, but you mustn’t give up. Even though subsequent transplants are generally thought to carry a higher risk, it is also true that a third or even a fourth transplants have successfully taken following rejection of the earlier ones. The keratoconus group will be rooting for you.
I think the decision to go ahead or not is a very difficult one. If the acuity is good and CL wear is no problem, there is no decision to make. However, I know of people who have been offered transplants when the CL acuity has been sufficient to drive a car with all day wearing time of 40 years standing, so it clear that there is some alternative opinions.
KP
-
Whiteduck
Epicon.
Anyone heard of this lens type. Apparently it was released in the UK a couple of years ago but it was withdrawn due to some problems with the material used binding to the cornea - ouch...
Ultravision/Igel have now re-designed this and it was released in the USA. We should see it later this year... is it really a revolution - we will have to wait and see...
Apart from Sclerals, has anyone any information on large diameter lenses for KC ?
Anyone heard of this lens type. Apparently it was released in the UK a couple of years ago but it was withdrawn due to some problems with the material used binding to the cornea - ouch...
Ultravision/Igel have now re-designed this and it was released in the USA. We should see it later this year... is it really a revolution - we will have to wait and see...
Apart from Sclerals, has anyone any information on large diameter lenses for KC ?
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 114 guests