Philip, great post. Thanks very much.
Philip said:
I am finding no matter what I do my eyes are becoming more
intolerant of lenses. The solution I have found is to only wear one at a time. This may sound scary to some/most of you but it works well. This first time I did this it confused me a little, now (after 5 years) my brain is so used to the changing
(Sometimes I wear my LHS for 4 hours and then RHS for 4) that I get disorientated with both lenses in. It is legal to drive with one lens in and I haven\t had a single problem in respect to judging distances.
I second this: I too have been doing this for years, and apart
from a few odd looks, cope well and it does ease the burden on
the eyes and increase availability of with-lens vision. One
thing though: I find my ability to judge distances is terrible!
- maybe this is something else where we all vary, but I would
suggest caution with driving until you've found out how it
affects you.
The other piece of advice I can offer is, ]Don\t be afraid to do things without your lenses in.^ I find it\s all a matter of adjusting your environment and letting your brain get used to
the idea.
I second this too. And would add: don't be afraid to search out adaptive equipment that may be of help, eg. talking and/or
screen magnification software, scan-and-talk devices. Just
because we can (well, we hope we can) see better when we have
our lenses in, that doesn't mean we can't benefit from
accessibility aids for when we can't - or when we can, of
course, if the corrected vision isn't too good, or if using the
aids might help prolong lens wear.
Great summary checklist, too.
Rosemar6y
--
Rosemary F. Johnson
Quicktopic posts: Jan 2004
Moderators: Anne Klepacz, John Smith, Sweet
-
umbilica@umbilical.demon.
Brian said:
I think that scleral lenses are also known as haptic lenses
Correct.
which have been around since the early 80s.
The 1880s, in fact! - when they were made of glass, very heavy,
and could only be worn for short periods. And they were the
only contact lenses there were. In fact, the whole concept of
contact lenses started when someone had the bright idea of
trying to treat KC with pieces of glass in the eye.
So, if it weren't for us folks with KC, the whole contact lens
industry wouldn't have got started!
Rosemary
--
Rosemary F. Johnson
I think that scleral lenses are also known as haptic lenses
Correct.
which have been around since the early 80s.
The 1880s, in fact! - when they were made of glass, very heavy,
and could only be worn for short periods. And they were the
only contact lenses there were. In fact, the whole concept of
contact lenses started when someone had the bright idea of
trying to treat KC with pieces of glass in the eye.
So, if it weren't for us folks with KC, the whole contact lens
industry wouldn't have got started!
Rosemary
--
Rosemary F. Johnson
-
Sue B - Hertfordshire
-
Ken Pullum
One recent correspondent, Paul Bines, # 2402, commented that there are frequent advocations of scleral lenses, suggesting as I interpreted it, that it presented am somewhat overstated view, and pointing out that for some a transplant is the only realistic option. It is quite clear that contact lenses, including sclerals are not always satisfactory, and when a person is in this situation, of course he / she must consider a transplant. The issue is more the timing of this decision. Jane’s entry, # 2406, almost at the same time as Paul’s recent one, remarked that it will never be known whether or not a scleral lens would have been an alternative to a transplant, because it was never offered.
This lively and open discussion represents one of the major differences between the UK and USA KC groups, where scleral lenses are rarely suggested. It also reflects a major difference in the current attitude of UK and USA KC clinicians. A British man I know living in the USA has been wearing sclerals for 40 years, 365 days a year. He called to tell me he had been put on the list for about one month later to be transplanted because scleral lenses were “Old hat these days”. I didn’t think that was a good reason for a transplant, and said so, since his call implied he was looking for some input. He withdrew from the list. That was two or three years ago, he is still OK with his outmoded scleral lens.
If I am away for a few days, one of my high priority jobs on return is to catch up on the discussion page. I suspect Paul also probably reads most or all of them, but the fact that the same questions crop up frequently indicates back reading is not common practice. According to the webmaster, there are only 20 to 40 people seeing any page, so some repetition is unavoidable and does not detract from the value of the forum in any way.
The principal achievement made by the UK KC self help group is to have significantly improved the amount of information in the public domain, thereby enabling people with KC to contribute to any decisions made on their behalf. On the other hand, the plethora of information can be mesmerizing, and some of it is inappropriate or even incorrect, but on balance, the move towards having informed consent is a major step forward.
An earlier entry, well over a year ago, responding to the subject of when to go for the transplant said Â….. ‘The time to have a transplant is when a surgeon says so.’ Â… Well, that is one way to look at it, but I would be more inclined to suggest the time is when the person about to have his / her cornea transplanted feels comfortable that all the other non surgical alternatives have been investigated to a satisfactory level. This is where informed consent is so crucial. 25 years ago, the patient would not have said anything while the surgical team discussed the case, except “Yes doctor, thank you doctor” at the end of it. Thankfully things are different now and medical decisions are made jointly.
If KC is the indication for a transplant, the chances of a successful outcome are indisputably good. There are acknowledged problems with any surgery, but if the non surgical options have been investigated satisfactorily, there is no reason to not proceed. A good result is more likely than for any other corneal pathology because the cornea is, although irregular and distended, comparatively clear and healthy. However, for the same reasons, there is more to lose than if the cornea is opaque and vascularised. Defining a successful outcome for any surgical procedure is a very complicated issue, not least because it depends on whether it is from the clinician’s or the patients’s perspective. Again, thinking of 25 years ago, if the cornea remained clear after the surgery, it was successful: plaintiff comments of “But I can’t see, doctor” didn’t necessarily detract from that assessment.
I hope this contributes constructively to the scleral lens, or any other type of lens, vs transplant debate. The KC group in many ways has made the decision making more complex, but without doubt has contributed to a better understanding all round.
Ken Pullum
This lively and open discussion represents one of the major differences between the UK and USA KC groups, where scleral lenses are rarely suggested. It also reflects a major difference in the current attitude of UK and USA KC clinicians. A British man I know living in the USA has been wearing sclerals for 40 years, 365 days a year. He called to tell me he had been put on the list for about one month later to be transplanted because scleral lenses were “Old hat these days”. I didn’t think that was a good reason for a transplant, and said so, since his call implied he was looking for some input. He withdrew from the list. That was two or three years ago, he is still OK with his outmoded scleral lens.
If I am away for a few days, one of my high priority jobs on return is to catch up on the discussion page. I suspect Paul also probably reads most or all of them, but the fact that the same questions crop up frequently indicates back reading is not common practice. According to the webmaster, there are only 20 to 40 people seeing any page, so some repetition is unavoidable and does not detract from the value of the forum in any way.
The principal achievement made by the UK KC self help group is to have significantly improved the amount of information in the public domain, thereby enabling people with KC to contribute to any decisions made on their behalf. On the other hand, the plethora of information can be mesmerizing, and some of it is inappropriate or even incorrect, but on balance, the move towards having informed consent is a major step forward.
An earlier entry, well over a year ago, responding to the subject of when to go for the transplant said Â….. ‘The time to have a transplant is when a surgeon says so.’ Â… Well, that is one way to look at it, but I would be more inclined to suggest the time is when the person about to have his / her cornea transplanted feels comfortable that all the other non surgical alternatives have been investigated to a satisfactory level. This is where informed consent is so crucial. 25 years ago, the patient would not have said anything while the surgical team discussed the case, except “Yes doctor, thank you doctor” at the end of it. Thankfully things are different now and medical decisions are made jointly.
If KC is the indication for a transplant, the chances of a successful outcome are indisputably good. There are acknowledged problems with any surgery, but if the non surgical options have been investigated satisfactorily, there is no reason to not proceed. A good result is more likely than for any other corneal pathology because the cornea is, although irregular and distended, comparatively clear and healthy. However, for the same reasons, there is more to lose than if the cornea is opaque and vascularised. Defining a successful outcome for any surgical procedure is a very complicated issue, not least because it depends on whether it is from the clinician’s or the patients’s perspective. Again, thinking of 25 years ago, if the cornea remained clear after the surgery, it was successful: plaintiff comments of “But I can’t see, doctor” didn’t necessarily detract from that assessment.
I hope this contributes constructively to the scleral lens, or any other type of lens, vs transplant debate. The KC group in many ways has made the decision making more complex, but without doubt has contributed to a better understanding all round.
Ken Pullum
-
ANDY
PHILIP (LONDON).
Because i cannot see more than 6 inches without my lenses,Tring to do things without them is extremly(?)hard,Although i can fit 99.9% of vehicles brakes with my eyes closed in reality i must not.Just work alone i have to have them in around 47.5 hours a week without spending time with the kids etc.
Constant aching,scratchyness,i have had special lenses made very very dark to compensate for bright light which causes my eyes to weep constantly,and quite alot the sensation as though there is a fly in my eye that type of stinging,recently i have cut fizzy drinks right out drinking only filtered water,squash and tea/coffee.I also have got to the stage where my lenses can only remain in for 5-6 hours before they need an hours rest,I would have been a manager of a centre now instead of still a fitter,KC isnt just about your eyes for me as others its acted like a restrictor and halted one's progress up the employment ladder.
andy4jo@ntlworld.com
Because i cannot see more than 6 inches without my lenses,Tring to do things without them is extremly(?)hard,Although i can fit 99.9% of vehicles brakes with my eyes closed in reality i must not.Just work alone i have to have them in around 47.5 hours a week without spending time with the kids etc.
Constant aching,scratchyness,i have had special lenses made very very dark to compensate for bright light which causes my eyes to weep constantly,and quite alot the sensation as though there is a fly in my eye that type of stinging,recently i have cut fizzy drinks right out drinking only filtered water,squash and tea/coffee.I also have got to the stage where my lenses can only remain in for 5-6 hours before they need an hours rest,I would have been a manager of a centre now instead of still a fitter,KC isnt just about your eyes for me as others its acted like a restrictor and halted one's progress up the employment ladder.
andy4jo@ntlworld.com
-
MATT
Hello out there,
I would really appreciate it if someone out there with some sort of medical knowledge could let me know what the realities of KC progression are. I have surfed many websites and asked at the Optemetry College where I was diagnosed (and still receive check-ups) but still seem to be getting the vaguest of answers. I was diagnosed with KC nine years ago and my eyes have only slightly deterioated since then. At present wearing glasses is sufficient to correct my astigmatism. I would like to know if the progression to the usage of rigid contacts is inevitable for any one with KC or if it only occurs for a certain percentage. Also, I would like to know if the condition ever results in complete blindness. It is really quite annoying how deftly my optomologist dodges these questions and I extend my thanks in advance to any one who can shoot some information (or simply an opinion) in my direction.
I would really appreciate it if someone out there with some sort of medical knowledge could let me know what the realities of KC progression are. I have surfed many websites and asked at the Optemetry College where I was diagnosed (and still receive check-ups) but still seem to be getting the vaguest of answers. I was diagnosed with KC nine years ago and my eyes have only slightly deterioated since then. At present wearing glasses is sufficient to correct my astigmatism. I would like to know if the progression to the usage of rigid contacts is inevitable for any one with KC or if it only occurs for a certain percentage. Also, I would like to know if the condition ever results in complete blindness. It is really quite annoying how deftly my optomologist dodges these questions and I extend my thanks in advance to any one who can shoot some information (or simply an opinion) in my direction.
-
Andrew Bosanquet
Ken Pullum said:
An earlier entry, well over a year ago, responding to the subject of when to go for the transplant said ... 'The time to have a transplant is when a surgeon says so.' . Well, that is one way to look at it, but I would be more inclined to suggest the time is when the person about to have his / her cornea transplanted feels comfortable that all the other non surgical alternatives have been investigated to a satisfactory level.
I would thoroughly agree with Ken – do not have a transplant just because a surgeon says so. I was threatened with a corneal graft 6 years ago and went to see the surgeon. I told him that if he said I needed one, I had a list of 50 questions to ask him! He was a young guy and we sat in silence for 20 minutes while he reviewed my notes and went to talk to his boss. Eventually he said, ‘I would not recommend surgery until your quality of life has deteriorated enough to warrant it.’ (ie quality of life can be expected to be better after surgery). I thought, ‘You are right, Mate’ and walked out a happy man. Since then I have been through Rose K lenses and now sclerals and my quality of life still very good.
Remember surgeons are paid to wield a scalpel – if there is any doubt in your mind, get a second opinion before they touch you!!
Andrew
An earlier entry, well over a year ago, responding to the subject of when to go for the transplant said ... 'The time to have a transplant is when a surgeon says so.' . Well, that is one way to look at it, but I would be more inclined to suggest the time is when the person about to have his / her cornea transplanted feels comfortable that all the other non surgical alternatives have been investigated to a satisfactory level.
I would thoroughly agree with Ken – do not have a transplant just because a surgeon says so. I was threatened with a corneal graft 6 years ago and went to see the surgeon. I told him that if he said I needed one, I had a list of 50 questions to ask him! He was a young guy and we sat in silence for 20 minutes while he reviewed my notes and went to talk to his boss. Eventually he said, ‘I would not recommend surgery until your quality of life has deteriorated enough to warrant it.’ (ie quality of life can be expected to be better after surgery). I thought, ‘You are right, Mate’ and walked out a happy man. Since then I have been through Rose K lenses and now sclerals and my quality of life still very good.
Remember surgeons are paid to wield a scalpel – if there is any doubt in your mind, get a second opinion before they touch you!!
Andrew
-
Andrew Bosanquet
Thanks for some great posts lately. Philip-from-London’s post responding to Andy’ pain is already filed in under ‘Important’. I hope I will not need to use it. Thank you Philip.
Philip said:
Diet/Sugar Free drink/food - One of the greatest side-effects caused by the chemicals (aspartame) used in diet, "sugar free" type drinks is know (anecdotally) to be eye problems Â…
This and any other ‘dietary’ advice is good to know. I remember people saying to me ?40 years ago that fizzy drinks were not good for my eyes – I think it was the acidity of the carbon dioxide in them that was though to cause the problems. Healthy eating and living in general must be good for our eyes just as it is good for our hearts and the rest of our bodies.
Eat well!
Andrew
Philip said:
Diet/Sugar Free drink/food - One of the greatest side-effects caused by the chemicals (aspartame) used in diet, "sugar free" type drinks is know (anecdotally) to be eye problems Â…
This and any other ‘dietary’ advice is good to know. I remember people saying to me ?40 years ago that fizzy drinks were not good for my eyes – I think it was the acidity of the carbon dioxide in them that was though to cause the problems. Healthy eating and living in general must be good for our eyes just as it is good for our hearts and the rest of our bodies.
Eat well!
Andrew
-
Jan Fisher
Sanjeev Said: You mentioned that you ues a ultra-sonic jewellary cleaner from Argos, can you tell me what solutions you use with it. And you said you have problems with protein build-up how do you counter that?
Also you said you used washing-up liquid with no problems before; have you ever thought of combining the two ideas at all ! Thanks.
I wwas advised to use my ordinary soaking solution in my lens case and then I place that sunmerged in water in the Jewellry cleaner. It does seem to help a bit as I have a terrific build up of protein. My lenses have to keep on going back either to the lab or the manufacturers for cleaning, even though they are in protein remover every night. Yes it does cost me a fortune.
I have not used fairy liquid for years now as my old lens practitioner said not to use it with my "new" RGP's (that dates me doesn't it. It is a question I shall be bringing up with my new lens guy shortly. When I was using it I can honestly say that, for me, it was the best cleaner around.
Jan
Also you said you used washing-up liquid with no problems before; have you ever thought of combining the two ideas at all ! Thanks.
I wwas advised to use my ordinary soaking solution in my lens case and then I place that sunmerged in water in the Jewellry cleaner. It does seem to help a bit as I have a terrific build up of protein. My lenses have to keep on going back either to the lab or the manufacturers for cleaning, even though they are in protein remover every night. Yes it does cost me a fortune.
I have not used fairy liquid for years now as my old lens practitioner said not to use it with my "new" RGP's (that dates me doesn't it. It is a question I shall be bringing up with my new lens guy shortly. When I was using it I can honestly say that, for me, it was the best cleaner around.
Jan
-
Jan Fisher
Sanjeev Said: You mentioned that you ues a ultra-sonic jewellary cleaner from Argos, can you tell me what solutions you use with it. And you said you have problems with protein build-up how do you counter that?
Also you said you used washing-up liquid with no problems before; have you ever thought of combining the two ideas at all ! Thanks.
I was advised to use my ordinary soaking solution in my lens case and then I place that submerged in water in the Jewellry cleaner. It does seem to help a bit as I have a terrific build up of protein. My lenses have to keep on going back either to the lab or the manufacturers for cleaning, even though they are in protein remover every night. Yes it does cost me a fortune.
I have not used fairy liquid for years now as my old lens practitioner said not to use it with my "new" RGP's (that dates me doesn't it. It is a question I shall be bringing up with my new lens guy shortly. When I was using it I can honestly say that, for me, it was the best cleaner around.
Jan
Also you said you used washing-up liquid with no problems before; have you ever thought of combining the two ideas at all ! Thanks.
I was advised to use my ordinary soaking solution in my lens case and then I place that submerged in water in the Jewellry cleaner. It does seem to help a bit as I have a terrific build up of protein. My lenses have to keep on going back either to the lab or the manufacturers for cleaning, even though they are in protein remover every night. Yes it does cost me a fortune.
I have not used fairy liquid for years now as my old lens practitioner said not to use it with my "new" RGP's (that dates me doesn't it. It is a question I shall be bringing up with my new lens guy shortly. When I was using it I can honestly say that, for me, it was the best cleaner around.
Jan
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