Hiya Phillipa, I'm 20 and have had KC for 5 years now. I'm currently on the strongest lenses possible, pending operation! However, I'm exploring all possible alternatives before graft, such as scleral lenses (did I spell that right guys?). I personally can't use contacts because my KC is so advanced, but really it's just a case of finding what's best for you.
Dave, as far as severity goes - how long is a piece of string??? Like I say, I'm 20, have had it for 5 years and am already facing an operation. My sight is so bad that coupled with my ME I am not able to work, and am even getting social security from the government bacause I can barely see.
If either of you want to contact me then just <a href="mailto:the-boss@little-miss-alien.co.uk">email</a> me!
Shelley xxx
Quicktopic posts: Feb 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Amanda Stigle
Hello Dave Hamblett
Sorry for not answering your question before, but I saw Vicky's first message and wanted to reply asap.
To answer your question,the length of time that people with KC can manage with corneal RGP's varies a great deal, if the shape of the eye changes,and becomes steeper then scleral lenses would become the better option,the vast majority of people will always be able to manage with glasses or corneal RGP's. Regular clinic appointments where the eye topography (shape, contour) is checked will mean that the Dr's will advise you when changes occur. But you doen't have to be at the stage of not being able to wear corneal lenses lenses before you can try a scleral lens.
They are however difficult to initially adjust to, you therefore need to be prepared to persevere with them.
I personally wore RGP (Rigid Gas Permeable lenses) for 10 years after being diagnosed with KC without any problems. But as KC advanced I was unable to keep the lenses in place, they fell out so frequently and at the most inconvenient times in busy public places leaving me stranded with two small children!
At my next appointment at Moorfilds I was told that I would need surgery on my left eye. I had never heard of scleral lenses at this stage. I was next seen by a Dr undertaking his fellowship studies who asked me if I had tried scleral lenses and introduced me to Ken. Fantastic! I immediately got my sight back with the knowledge that this lens was not going to fall out, and now surgery wasn't required. I have been wearing scleral lenses for 5 years, and would not want to go back to corneal lenses even if I could.
I ought to add that I have had problems over this last year which prevented me from wearing scleral for a while, but I am pleased to say that I have got better sight in the left eye and hope to have a new scleral in the right eye very soon.
Scleral lens fitting sets are not routinely available at all eye hospitals so may not be offered them, or you may be offered the chance to go to an alternative hospital for the fitting if funding is available in your NHS Trust to pay for it.
Lots of issues here!
Information about the types of lenses available will be placed on a seperate page, on this website very soon. Then you will know what is available and can ask your Ophthalmologist or optometrist about the lens that may be a viable option for you.
Sorry for not answering your question before, but I saw Vicky's first message and wanted to reply asap.
To answer your question,the length of time that people with KC can manage with corneal RGP's varies a great deal, if the shape of the eye changes,and becomes steeper then scleral lenses would become the better option,the vast majority of people will always be able to manage with glasses or corneal RGP's. Regular clinic appointments where the eye topography (shape, contour) is checked will mean that the Dr's will advise you when changes occur. But you doen't have to be at the stage of not being able to wear corneal lenses lenses before you can try a scleral lens.
They are however difficult to initially adjust to, you therefore need to be prepared to persevere with them.
I personally wore RGP (Rigid Gas Permeable lenses) for 10 years after being diagnosed with KC without any problems. But as KC advanced I was unable to keep the lenses in place, they fell out so frequently and at the most inconvenient times in busy public places leaving me stranded with two small children!
At my next appointment at Moorfilds I was told that I would need surgery on my left eye. I had never heard of scleral lenses at this stage. I was next seen by a Dr undertaking his fellowship studies who asked me if I had tried scleral lenses and introduced me to Ken. Fantastic! I immediately got my sight back with the knowledge that this lens was not going to fall out, and now surgery wasn't required. I have been wearing scleral lenses for 5 years, and would not want to go back to corneal lenses even if I could.
I ought to add that I have had problems over this last year which prevented me from wearing scleral for a while, but I am pleased to say that I have got better sight in the left eye and hope to have a new scleral in the right eye very soon.
Scleral lens fitting sets are not routinely available at all eye hospitals so may not be offered them, or you may be offered the chance to go to an alternative hospital for the fitting if funding is available in your NHS Trust to pay for it.
Lots of issues here!
Information about the types of lenses available will be placed on a seperate page, on this website very soon. Then you will know what is available and can ask your Ophthalmologist or optometrist about the lens that may be a viable option for you.
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Mikekeratoconus@aol.com
Hello all. To Vicky,
As Amanda has already said I was also diagnosed at 11 years old. This was in 1964 however. I think my parents were much more frightened than I was and I was lucky to be referred to Moorfields. I simply got used to regular hospital visits as my eyes changed and lens were altered or replaced. In some ways being diagnosed at that age makes it easier to accept since you grow up with the condition and all that goes with it. There are certain points I would like to raise and suggest you e mail me direct on mikekeratoconus@aol.com and perhaps we could take these further by e mail or phone.
As Amanda has already said I was also diagnosed at 11 years old. This was in 1964 however. I think my parents were much more frightened than I was and I was lucky to be referred to Moorfields. I simply got used to regular hospital visits as my eyes changed and lens were altered or replaced. In some ways being diagnosed at that age makes it easier to accept since you grow up with the condition and all that goes with it. There are certain points I would like to raise and suggest you e mail me direct on mikekeratoconus@aol.com and perhaps we could take these further by e mail or phone.
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Ken Pullum
Corneal transplants and keratoconus
Corneal transplants have been refined to an exceptionally high level of expertise over the years, and keratoconus is the major single indication. For other conditions, the surgeon is usually dealing with a seriously unhealthy cornea which may be opaque and vascularised. There is a tendency for the cornea to become scarred in keratoconus as well, but by how much varies from person to person. Sometimes there is hardly any after a lifetime of contact lens wear, while occasionally it happens so rapidly that there is no useful vision even when there has been little or no contact lens wear. So, there is very little to gain by trying to predict how quickly such changes are likely to occur.
There is a significantly better chance of a successful outcome for keratoconus than any other corneal condition because the cornea is ectactic (thin) and distended, but otherwise avascular and essentially healthy, at least from a metabolic point of view. However, for exactly these reasons, there is also more to lose, especially as there may be an alternative treatment option available.
Transplant outcome
For keratoconus, when the success rate is discussed, a fair and honest answer is to say that 95% survive. However, it is a really complex issue and that is a meaningless statistic on its own. For a start, there is not much information about how long they last. The known outcome is generally stated at five years post op, ie 95% are known to survive that period. Most rejections occur at an early stage, so if the transplant survives five years, it is reasonable to presume that it is fairly stable thereafter. I know some centres state a higher survival rate, and I am also aware that many transplants have lasted much longer than five years. People move or do not attend follow up for other reasons. The fact is that it is not easy to collect conclusive information, and anecdotal data does not stand up to statistical scrutiny.
Defining success, failure and survival
Then there is the question of defining the outcome. There was a time, not that long ago, when if the graft was clear, it was successful and if it was not clear, it was unsuccessful. Nice and simple. There may have been 25.00 dioptres of astigmatism, or the eye was not used post op for some other reason, but that did not seem to be an important issue. Hence the expression in the previous paragraph Â… survival Â… rather than success. In fact, I was once picked up by one of the consultants on that point when giving a presentation. I floated the success rate of 95% as a discussion point, to which the reply came, ‘You mean survival’. Quite right too.
Survival is relatively easy to define, but success is a different matter. About 50% of post transplanted corneas need a contact lens for the best visual result, but if the cornea is clear, the vision with a contact lens may well be better than could be expected pre-op. Somewhere between a sixth and a fifth of the scleral lens wearers I know are post transplant, totalling not far off 200. Keratoconus sufferers who are fed up to the back teeth with contact lenses may not agree that still needing them post op constitutes a successful outcome.
The debate ‘scleral lenses or transplant’ is shaky. Sclerals have advantages and drawbacks compared to corneal RGP lenses, but the presumed progression Â… RGP corneal lenses, Â… sclerals, Â… then if they fail, Â… a transplantÂ… is not the right way to look at it. The reality is that modern RGP sclerals are an option for contact lens management of keratoconus at all levels. Some people have worn sclerals for over fifty years. Those who started before the war would have had lenses made from glass!
15 years ago it was true that sclerals were only seriously considered feasible in the most advanced cases, but now it is just as likely to find people switching between sclerals and corneals. Sometimes sclerals are worn for a few months or years because of intolerance to corneals, but if they are tried again at a later date they may well be better, eg Jackie’s story in the discussion page recently. If there was a competition between the two types, sclerals just went one down. More to the point is the combination of both, along with Jackie’s own efforts under difficult circumstances, have kept her going for a few years, and she has avoided the operating table.
It is great to see such lively debate on the web site about the options available for treatment for keratoconus. I hope you don’t mind a contribution from the ‘other side’.
Ken Pullum
February 2002
Corneal transplants have been refined to an exceptionally high level of expertise over the years, and keratoconus is the major single indication. For other conditions, the surgeon is usually dealing with a seriously unhealthy cornea which may be opaque and vascularised. There is a tendency for the cornea to become scarred in keratoconus as well, but by how much varies from person to person. Sometimes there is hardly any after a lifetime of contact lens wear, while occasionally it happens so rapidly that there is no useful vision even when there has been little or no contact lens wear. So, there is very little to gain by trying to predict how quickly such changes are likely to occur.
There is a significantly better chance of a successful outcome for keratoconus than any other corneal condition because the cornea is ectactic (thin) and distended, but otherwise avascular and essentially healthy, at least from a metabolic point of view. However, for exactly these reasons, there is also more to lose, especially as there may be an alternative treatment option available.
Transplant outcome
For keratoconus, when the success rate is discussed, a fair and honest answer is to say that 95% survive. However, it is a really complex issue and that is a meaningless statistic on its own. For a start, there is not much information about how long they last. The known outcome is generally stated at five years post op, ie 95% are known to survive that period. Most rejections occur at an early stage, so if the transplant survives five years, it is reasonable to presume that it is fairly stable thereafter. I know some centres state a higher survival rate, and I am also aware that many transplants have lasted much longer than five years. People move or do not attend follow up for other reasons. The fact is that it is not easy to collect conclusive information, and anecdotal data does not stand up to statistical scrutiny.
Defining success, failure and survival
Then there is the question of defining the outcome. There was a time, not that long ago, when if the graft was clear, it was successful and if it was not clear, it was unsuccessful. Nice and simple. There may have been 25.00 dioptres of astigmatism, or the eye was not used post op for some other reason, but that did not seem to be an important issue. Hence the expression in the previous paragraph Â… survival Â… rather than success. In fact, I was once picked up by one of the consultants on that point when giving a presentation. I floated the success rate of 95% as a discussion point, to which the reply came, ‘You mean survival’. Quite right too.
Survival is relatively easy to define, but success is a different matter. About 50% of post transplanted corneas need a contact lens for the best visual result, but if the cornea is clear, the vision with a contact lens may well be better than could be expected pre-op. Somewhere between a sixth and a fifth of the scleral lens wearers I know are post transplant, totalling not far off 200. Keratoconus sufferers who are fed up to the back teeth with contact lenses may not agree that still needing them post op constitutes a successful outcome.
The debate ‘scleral lenses or transplant’ is shaky. Sclerals have advantages and drawbacks compared to corneal RGP lenses, but the presumed progression Â… RGP corneal lenses, Â… sclerals, Â… then if they fail, Â… a transplantÂ… is not the right way to look at it. The reality is that modern RGP sclerals are an option for contact lens management of keratoconus at all levels. Some people have worn sclerals for over fifty years. Those who started before the war would have had lenses made from glass!
15 years ago it was true that sclerals were only seriously considered feasible in the most advanced cases, but now it is just as likely to find people switching between sclerals and corneals. Sometimes sclerals are worn for a few months or years because of intolerance to corneals, but if they are tried again at a later date they may well be better, eg Jackie’s story in the discussion page recently. If there was a competition between the two types, sclerals just went one down. More to the point is the combination of both, along with Jackie’s own efforts under difficult circumstances, have kept her going for a few years, and she has avoided the operating table.
It is great to see such lively debate on the web site about the options available for treatment for keratoconus. I hope you don’t mind a contribution from the ‘other side’.
Ken Pullum
February 2002
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GailMJ
Hi everyone.
I am new to this site and think that it is great. I just thought that I would let you know that I am going for a deep lamellar graft on my left eye on 4 March 2002 at Shirley Oaks Private Hospital. I was diagonosed with KC in 1993 (at age 19) and have been managing fine on rose k lenses for most of that time. However the scarring in the left eye is quite excessive and vision can no longer be improved by wearing lenses. My surgeon is of the opinion that because of the size and placement of the cone I am at a high risk for rejection if I was to proceed with a full corneal transplant. With a DLK I apparently will have less of a chance of rejection although astigmatism could be worse. At the moment I am of the opinion that I would rather have astigmatism then rejection.
I am new to this site and think that it is great. I just thought that I would let you know that I am going for a deep lamellar graft on my left eye on 4 March 2002 at Shirley Oaks Private Hospital. I was diagonosed with KC in 1993 (at age 19) and have been managing fine on rose k lenses for most of that time. However the scarring in the left eye is quite excessive and vision can no longer be improved by wearing lenses. My surgeon is of the opinion that because of the size and placement of the cone I am at a high risk for rejection if I was to proceed with a full corneal transplant. With a DLK I apparently will have less of a chance of rejection although astigmatism could be worse. At the moment I am of the opinion that I would rather have astigmatism then rejection.
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Cone Eyes
Hello All
My current situation is I have good vision, decent comfort (although on limited wear time, I alternate lenses to do a full day every 4 hours), but because of my advanced KC, my optometrist has ran out of lenses to try (RGPs). So as a result of this and recent problems, I was referred to a surgeon who has recommended DALK surgery.
So I have three options as I see it, Go on with my current lenses until total intolerance occurs, Go ahead with surgery or Try another lens type.
What damage can I do, or can befall me in the natural progression of KC that may prevent DALK in the future or make conventional surgery more of a risk.
Of all the surgery types I know of DALK/DLK seems be the preferred option.
Future developments are a long way off, do I wait for the perfect cure in 20 years, or go on with three good weeks in every 5 (in other words up to 40% spent with reduced quality of life).
DALK – I would like to hear from anyone who has had it, going to have it, knows anything about it.
LASIK (or similar) post op – is it possible to use laser treatment after surgery?
Is there a standard check list of questions compiled that I can ask the surgeon when I see him again, if not can we start to compile one ASAP?
Following on from the Ken post, How does the cornea become scarred due to KC?
cone_eyes@hotmail.com
My current situation is I have good vision, decent comfort (although on limited wear time, I alternate lenses to do a full day every 4 hours), but because of my advanced KC, my optometrist has ran out of lenses to try (RGPs). So as a result of this and recent problems, I was referred to a surgeon who has recommended DALK surgery.
So I have three options as I see it, Go on with my current lenses until total intolerance occurs, Go ahead with surgery or Try another lens type.
What damage can I do, or can befall me in the natural progression of KC that may prevent DALK in the future or make conventional surgery more of a risk.
Of all the surgery types I know of DALK/DLK seems be the preferred option.
Future developments are a long way off, do I wait for the perfect cure in 20 years, or go on with three good weeks in every 5 (in other words up to 40% spent with reduced quality of life).
DALK – I would like to hear from anyone who has had it, going to have it, knows anything about it.
LASIK (or similar) post op – is it possible to use laser treatment after surgery?
Is there a standard check list of questions compiled that I can ask the surgeon when I see him again, if not can we start to compile one ASAP?
Following on from the Ken post, How does the cornea become scarred due to KC?
cone_eyes@hotmail.com
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Sue Ingram
Dear Cone Eyes (very appropriate name!), Have scleral lenses been offered to you as an option? It may definitely be worth asking your optometrist if you can try these before considering any type of surgery.
I had worn RGP corneal lenses for 25 years when I started experiencing really serious problems with comfort - in the end I just could not keep them in at all. After about a year of trying many different types of RGP corneal lenses to no avail, scleral lenses were suggested. I now either wear the sclerals all day or wear them for half the day and my RGP corneals for the other half of the day - having the sclerals has meant that I can wear my RGP corneal lenses again and when I do they are much more comfortable as I do not have to force my eyes to wear them from the moment I get up in the morning until the moment I go to bed!
You may well have been offered sclerals but if not, I do feel it is definitely worth a try; they are more comfortable than RGP corneals, they do not fall out and no grit/dust can get behind them. Let us know how you get on.
SUE
I had worn RGP corneal lenses for 25 years when I started experiencing really serious problems with comfort - in the end I just could not keep them in at all. After about a year of trying many different types of RGP corneal lenses to no avail, scleral lenses were suggested. I now either wear the sclerals all day or wear them for half the day and my RGP corneals for the other half of the day - having the sclerals has meant that I can wear my RGP corneal lenses again and when I do they are much more comfortable as I do not have to force my eyes to wear them from the moment I get up in the morning until the moment I go to bed!
You may well have been offered sclerals but if not, I do feel it is definitely worth a try; they are more comfortable than RGP corneals, they do not fall out and no grit/dust can get behind them. Let us know how you get on.
SUE
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Cone Eyes
Sue - everyone,
Sclerals have not been offered, my current set are Rose K.
The previous 3 months I had problems , one eye after the other, one due to bad fitting lens I now have a new set, the other an edema (fluid build up in cornea).
But like i said, lens comfort is now good in both eyes, but i limit the wear time to reduce the risk caused by over wear. I do cope with one lens at a time.
Also I have only recently started using dedicated cleaning and protien tablets (are you supposed to swollow them, they dont taste very nice!), I really can tell the difference after protien removal.
So im begining to think i really want to exhaust the potential of the new lenses, limited wear time and a new cleaning regiem before i go for Sclerals or surgury.
But i am concerned that i could suffer irrecoverable damage that may prevent DALK/DLK (deep scaring, increased thinning etc). I dont know if this issue can be predicted, is it disscussed much.
PROTEIN – Can you over do the removal? What causes the build up? Can any thing be done to prevent build up? What does the build up actually do to the eye? How long does it take to build up?
It has been mentioned before about good days/bad days, I found real comfort that somone else noticed this. Every things fine, then you wake up one morning and you have weeks of problems & discomfort. Is it a contact lens management issue (cleaning, wear time etc)?
I have a theory, it takes two weeks for a problem to arise, you spend another week hoping it will go away, finally you give in and leave the lens out for one/two weeks in order for the eye to recover, then the whole process starts again.
I would also like to stress the need for a standard check list of questions that can be put to the surgeon, can we start to compile one ASAP?
Sclerals have not been offered, my current set are Rose K.
The previous 3 months I had problems , one eye after the other, one due to bad fitting lens I now have a new set, the other an edema (fluid build up in cornea).
But like i said, lens comfort is now good in both eyes, but i limit the wear time to reduce the risk caused by over wear. I do cope with one lens at a time.
Also I have only recently started using dedicated cleaning and protien tablets (are you supposed to swollow them, they dont taste very nice!), I really can tell the difference after protien removal.
So im begining to think i really want to exhaust the potential of the new lenses, limited wear time and a new cleaning regiem before i go for Sclerals or surgury.
But i am concerned that i could suffer irrecoverable damage that may prevent DALK/DLK (deep scaring, increased thinning etc). I dont know if this issue can be predicted, is it disscussed much.
PROTEIN – Can you over do the removal? What causes the build up? Can any thing be done to prevent build up? What does the build up actually do to the eye? How long does it take to build up?
It has been mentioned before about good days/bad days, I found real comfort that somone else noticed this. Every things fine, then you wake up one morning and you have weeks of problems & discomfort. Is it a contact lens management issue (cleaning, wear time etc)?
I have a theory, it takes two weeks for a problem to arise, you spend another week hoping it will go away, finally you give in and leave the lens out for one/two weeks in order for the eye to recover, then the whole process starts again.
I would also like to stress the need for a standard check list of questions that can be put to the surgeon, can we start to compile one ASAP?
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Vicky Griffiths
We have come a couple of steps closer to getting an official diagnosis for Gareth this week. The corneal map results were finally received by our optician (couldn't refer without them) after me turning up there upset at the delay! In the meantime I had phoned around the universe (well Worcester and Birmingham) to find out where he could be seen quickest and by a person with experience of KC in children. I realise that the condition progresses slowly and all that, but I need to hear an official 'yes it is and this is what happens next' ( even though the optician said `there are lots of indicators in his mapping that the eyes are keratoconic'). He would not be seen until May in Worcester, nd that would probably not be with the corneal expert. That is a long time to not sleep! I phoned Birmingham childrens Hospital too, but they suggested trying Birmingham Eye Hospital, who have said they may see him, once they have seen the refferal letter and mapping results. Luckily, I went armed with all this info to the GP, and he said, 'I'll refer you to wherever you want to go, and I will not ask them I will tell them'!! So we are being refferad to Mr S Shah, or Mr McDonald at Birmingham Eye Hospital...don't know how long we'll wait.
By the way, does anyone know what percentage of KC sufferers are as young as 10/11 when diagnosed. All eye people I speak to say `Goodness, that is young! And someone on the Moorfields Helpdesk said that it meant it was far more likely that he would need corneal transplant for that reason, as the eye is not mature.
By the way, does anyone know what percentage of KC sufferers are as young as 10/11 when diagnosed. All eye people I speak to say `Goodness, that is young! And someone on the Moorfields Helpdesk said that it meant it was far more likely that he would need corneal transplant for that reason, as the eye is not mature.
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