Thanks John and Sue for the advice.
I'll keep you posted on my progress. I have an appt. at the contact lens clinic on the 26th Sept. so will discuss various things with them then.
thanks again,
Nick
This may amuse some.....I decided to wear my new lenses (although not an ideal fit yet) whilst out shopping. As I was walking along my left lens decided to try and pop out. As I was concentrating on ensuring that the lens didn't fall out completely I didn't notice the bench and...well you guessed right. I didn't loose the lens though, felt a bit of a prat but it amused me.
Quicktopic posts: Aug 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Carole woodruff
Ulka
I live in Buckinghamshire in England. We are very fortunate in having good health care but eye centres vary in their management of keratoconus considerably. The centre of excellence is Moorfields eye hospital in London. I know you would be able to be seen privately. I expect treatment in the USA would cost more than over here but it would be worth investigating. I had my first graft privately but in Adelaide, Australia. It was covered by health insurance but the public system would also have covered it as I am both an Australian and British citizen.
My KC was diagnosed about 6 months before we left the UK for Australia. At the time I lived in London and was seen at Charing Cross hospital. With hind sight I should have gone to Moorfields. The cone in my left cornea deteriorated rapidly in Oz, hence the surgery. However, I did manage to wear a left rgp lens pretty successfully whilst pregnant as by this time had been referred to the optometrist who worked with my surgeon. Looking back, after Tim's birth perhaps I should have waited longer before proceeding with the surgery, but I did what the medics advised. Back then I didn't know anyone else with KC or their experiences.
So baby no 1 was born July 1992. Graft no 1 was in Nov 92. Twins born Dec 94. To answer your question, no I didn't experience any problems with the grafted eye during this time and my right eye behaved itself with just the right corneal lens providing all the sight. It wasn't until after the birth of the twins that I was fitted with a lens for my left eye. But as I had too much astigmatism and very little vision out of it my Aussie surgeon took me back to theatre in Aug 94 ( whilst pregnant) to "re-fashion" the graft under a local anaesthetic. This was awful but soon forgotten!! I ended up with 3 stitches put back into the eye. I still couldn't see much out of it and at that time we returned to the UK. A colleague of my Aussie surgeon removed one of the stitches. The other 2 stayed put for 6 years. They didn't dissolve nor did they bother me.
I am now finding that when I've been wearing sclerals for a few days, if I put my corneal lens back in it doesn't feel right. This must be due to the fact that scleral lenses don't touch the cornea so the shape of mine has changed. Am going to see about having the prescription changed. Also, can't see so well out of it.
I know that during pregnancy the cornea changes shape but mine didn't seem affected by the second pregnancy.
I hope this is of some benefit to you.
Regards, Carole.
I live in Buckinghamshire in England. We are very fortunate in having good health care but eye centres vary in their management of keratoconus considerably. The centre of excellence is Moorfields eye hospital in London. I know you would be able to be seen privately. I expect treatment in the USA would cost more than over here but it would be worth investigating. I had my first graft privately but in Adelaide, Australia. It was covered by health insurance but the public system would also have covered it as I am both an Australian and British citizen.
My KC was diagnosed about 6 months before we left the UK for Australia. At the time I lived in London and was seen at Charing Cross hospital. With hind sight I should have gone to Moorfields. The cone in my left cornea deteriorated rapidly in Oz, hence the surgery. However, I did manage to wear a left rgp lens pretty successfully whilst pregnant as by this time had been referred to the optometrist who worked with my surgeon. Looking back, after Tim's birth perhaps I should have waited longer before proceeding with the surgery, but I did what the medics advised. Back then I didn't know anyone else with KC or their experiences.
So baby no 1 was born July 1992. Graft no 1 was in Nov 92. Twins born Dec 94. To answer your question, no I didn't experience any problems with the grafted eye during this time and my right eye behaved itself with just the right corneal lens providing all the sight. It wasn't until after the birth of the twins that I was fitted with a lens for my left eye. But as I had too much astigmatism and very little vision out of it my Aussie surgeon took me back to theatre in Aug 94 ( whilst pregnant) to "re-fashion" the graft under a local anaesthetic. This was awful but soon forgotten!! I ended up with 3 stitches put back into the eye. I still couldn't see much out of it and at that time we returned to the UK. A colleague of my Aussie surgeon removed one of the stitches. The other 2 stayed put for 6 years. They didn't dissolve nor did they bother me.
I am now finding that when I've been wearing sclerals for a few days, if I put my corneal lens back in it doesn't feel right. This must be due to the fact that scleral lenses don't touch the cornea so the shape of mine has changed. Am going to see about having the prescription changed. Also, can't see so well out of it.
I know that during pregnancy the cornea changes shape but mine didn't seem affected by the second pregnancy.
I hope this is of some benefit to you.
Regards, Carole.
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Ulka Patel
carole
thank you so much for sharing your story with me. its was quite encouraging.
i saw the doc yesterday, who said my inflammation has settled and i can resume back to my lens. i wore my right lens for just half hour and my eye was all red again. dont know what is happeneing. i am so frustrated now. after being so patient with wearing my lenses, seems like it has taken me no where. i think my lens does not fit well anymore, and thats causing all this redness. because when i wore my lens yesterday, i felt something was not right. may ibe its the fit and if not that ,then its because i wore it after almost 20 days.
i think i will have to see the doc again. i was hoping all would be well after all this waiting, but seems its not my day. have been off work for 3 weeks now. i think i might as well quit my job. not getting anywhere with this
ulka
>From: QT - Carole woodruff <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: ulkanp@hotmail.com
>Subject: Keratoconus
>Date: Mon, 26 Aug 2002 05:34:39 -0500 (CDT)
>
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< replied-to message removed by QT >
thank you so much for sharing your story with me. its was quite encouraging.
i saw the doc yesterday, who said my inflammation has settled and i can resume back to my lens. i wore my right lens for just half hour and my eye was all red again. dont know what is happeneing. i am so frustrated now. after being so patient with wearing my lenses, seems like it has taken me no where. i think my lens does not fit well anymore, and thats causing all this redness. because when i wore my lens yesterday, i felt something was not right. may ibe its the fit and if not that ,then its because i wore it after almost 20 days.
i think i will have to see the doc again. i was hoping all would be well after all this waiting, but seems its not my day. have been off work for 3 weeks now. i think i might as well quit my job. not getting anywhere with this
ulka
>From: QT - Carole woodruff <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: ulkanp@hotmail.com
>Subject: Keratoconus
>Date: Mon, 26 Aug 2002 05:34:39 -0500 (CDT)
>
_________________________________________________________________ MSN Photos is the easiest way to share and print your photos:
http://photos.msn.com/support/worldwide.aspx
< replied-to message removed by QT >
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Carole woodruff
Ulka
So sorry to hear that you are still not able to wear your lens . I really do understand how frustrated you feel. Do you think your Doctor could be persuaded to prescribe some anti-inflammatory drops, ie a steroid drop that is used post-transplant such as prednisolone (predsol drops 0.5%). My mother, who does not have KC but encountered difficulty wearing her rgp lenses one day for no particular reason, was given a short course of steroid drops which helped no end. She was told she has some corneal scarring which we are all subject to if we wear our corneal lenses all day ,every day for years on end. We all wear our lenses too many hours but it's a case of having to with KC.
You haven't mentioned the cause of the inflammation (Or if you have then please forgive me). Is it due to an infection? Has your Dr. taken a swab if infection is suspected. Or maybe you are suffering from an allergic conjunctivitis. You may find sodium cromoglycate drops to be of some benefit. They don't work immediately. You need to use them 4 times a day for the first couple of weeks then reduce as directed.
You mention seeing a Doctor. Have you a good optometrist specialised in fitting people with KC? Like you say, your problems could be because your eye has changed shape and the lens is a poor fit.
Try not to get too fed up. I know this is easier said than done.
Best wishes,
Carole.
So sorry to hear that you are still not able to wear your lens . I really do understand how frustrated you feel. Do you think your Doctor could be persuaded to prescribe some anti-inflammatory drops, ie a steroid drop that is used post-transplant such as prednisolone (predsol drops 0.5%). My mother, who does not have KC but encountered difficulty wearing her rgp lenses one day for no particular reason, was given a short course of steroid drops which helped no end. She was told she has some corneal scarring which we are all subject to if we wear our corneal lenses all day ,every day for years on end. We all wear our lenses too many hours but it's a case of having to with KC.
You haven't mentioned the cause of the inflammation (Or if you have then please forgive me). Is it due to an infection? Has your Dr. taken a swab if infection is suspected. Or maybe you are suffering from an allergic conjunctivitis. You may find sodium cromoglycate drops to be of some benefit. They don't work immediately. You need to use them 4 times a day for the first couple of weeks then reduce as directed.
You mention seeing a Doctor. Have you a good optometrist specialised in fitting people with KC? Like you say, your problems could be because your eye has changed shape and the lens is a poor fit.
Try not to get too fed up. I know this is easier said than done.
Best wishes,
Carole.
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sarah marsh
hiya all
hope you are all well!
as most of know may know i had corneal transplant 3weeks ago
and i was wondering if anyone could tell me wot happens if and when you get a rejection. this may sound silly but was wondering if they take old cornea out straigt away . i had to wait for a donnor so would you have to wait again ?
also im now on my second bottle of drops but eye sometimes feels like it is burning about an hour after drops go in,is this normal ?
thank you in advance
love sarah xx
hope you are all well!
as most of know may know i had corneal transplant 3weeks ago
and i was wondering if anyone could tell me wot happens if and when you get a rejection. this may sound silly but was wondering if they take old cornea out straigt away . i had to wait for a donnor so would you have to wait again ?
also im now on my second bottle of drops but eye sometimes feels like it is burning about an hour after drops go in,is this normal ?
thank you in advance
love sarah xx
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Ulka Patel
carole
thank you carole, u have been very helpful. i dont have any infection and the only reason for the inflammation is wearing my lenses for too long. i did see the doc again yesterday and she said the inflammation has totally settled. my eye are getting red because of dryness. she has prescribed and ointment to put in at night too keep my eye wet for longer unlike refresh tear which will not have an effect all nith long. my eye was much better this morning.
yes i am seeing good corneal surgeon, so there is no worry with
optpmetrists. i have one surgeon just 15 minutes away from home and the hospital i usually visit is 2 hrs away by air and this is an eye institute with a team of corneal specialists.
hey asking how much it would cost to get a graft in uk privately. i used to study in uk for a while.
thank you ulka
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thank you carole, u have been very helpful. i dont have any infection and the only reason for the inflammation is wearing my lenses for too long. i did see the doc again yesterday and she said the inflammation has totally settled. my eye are getting red because of dryness. she has prescribed and ointment to put in at night too keep my eye wet for longer unlike refresh tear which will not have an effect all nith long. my eye was much better this morning.
yes i am seeing good corneal surgeon, so there is no worry with
optpmetrists. i have one surgeon just 15 minutes away from home and the hospital i usually visit is 2 hrs away by air and this is an eye institute with a team of corneal specialists.
hey asking how much it would cost to get a graft in uk privately. i used to study in uk for a while.
thank you ulka
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Sue Ingram
Hi Ulka (889), I am glad that Carole has been able to answer many of your questions. The problem you are currently experiencing with wearing your corneal lenses seems to be exactly what I went through about 3-4 years' ago now - my eyes were completely fed up with having worn the lenses all day, every day, for well over 20 years and they were rebelling! I thought that this would mean that I would probably have to have the graft done as I could not keep my left lens in for more than about half an hour and even that was with excrutiating pain.
However, luckily, this was when scleral lenses cames to the rescue; I now either wear these all day or wear the sclerals for half the day and the corneals for the other half; having the scleral lenses has meant that now I do not wear the corneals ALL day, my eyes can tolerate them again. At least my eyes get a rest now. Obviously, this has kept me off the operating table.
Have you had a chance to ask your optometrist about scleral lenses yet to see if they are available in India? If you are considering coming to the UK for a graft, then it would definitely be worth coming to try scleral lenses - it only takes ten minutes to find out whether they would work for you and they would be considerably, considerably cheaper than a graft. If they work for you, this would mean you would not have to worry about when to have a baby and when to have a graft.
If you visit the Kerataconus Group Website http://www.keratoconus-group.org.uk/kcmain2.htm and go to 'Contributions from Experts', you will find two items, 'Contact Lenses for KC' (which describes scleral lenses, as well as all the other options) and 'Corneal Transplant and KC' (which gives you info on a graft). If you would like to find out about who to contact in the UK for scleral lenses and prices etc, please email me on sue.ingram@virgin.net and I can let you know.
KC can be extremely frustrating and often there is a alot of pain involved - we are all supporting you and I do hope that you find the solution that works for you very soon. keep smiling and take care :-) SUE
However, luckily, this was when scleral lenses cames to the rescue; I now either wear these all day or wear the sclerals for half the day and the corneals for the other half; having the scleral lenses has meant that now I do not wear the corneals ALL day, my eyes can tolerate them again. At least my eyes get a rest now. Obviously, this has kept me off the operating table.
Have you had a chance to ask your optometrist about scleral lenses yet to see if they are available in India? If you are considering coming to the UK for a graft, then it would definitely be worth coming to try scleral lenses - it only takes ten minutes to find out whether they would work for you and they would be considerably, considerably cheaper than a graft. If they work for you, this would mean you would not have to worry about when to have a baby and when to have a graft.
If you visit the Kerataconus Group Website http://www.keratoconus-group.org.uk/kcmain2.htm and go to 'Contributions from Experts', you will find two items, 'Contact Lenses for KC' (which describes scleral lenses, as well as all the other options) and 'Corneal Transplant and KC' (which gives you info on a graft). If you would like to find out about who to contact in the UK for scleral lenses and prices etc, please email me on sue.ingram@virgin.net and I can let you know.
KC can be extremely frustrating and often there is a alot of pain involved - we are all supporting you and I do hope that you find the solution that works for you very soon. keep smiling and take care :-) SUE
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John Smith
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Cleopatra2
Hi my sight had been relatively stable for 15yrs using lens but since a car accident, sight has changed. Was given a new lease of life with the use of scleral lenses that has been for the past two years.I am strongly opposed to surgery now, as with sclerals I dont feel I need surgery. It may sound illogical but it is only in the use of computers that the KC comes to the fore,to such an extent that I have change my profession to avoid fine work. All other aspects of my life the KC is not a problem, I pop in the old lenses all is fine.
However I recently had a review and athough I explained that I did not want surgery, it is impractical as I needed to be in my position for two years to have any hope of job security(I had experienced unemployment when changing careers). However, I did feel that I was being 'gently pushed' down the road of surgery and the conculsion was I should see the surgeon anyway. I am not a regular site user but I have gone back and read the messages and I am getting mixed messages. The surgery was successful but also sight is not as good or no sight, although one KC said that he was still happy he had the surgery.
The consultant was talking about a new procedure 'a partial transplant' which just sends even more bells ringing in my head.
I dont really know what I want from you guys??!!??
I just feel that at this stage no one is listerning, may be the surgeon will? but I feel that I take the ultimate risk so I should be heard. I have no probs with my lenses, and especially compared to some KC messages which in those circumstances lenses are not helping I understand but in my situation I dont understand the logic.
Any words of wisdom why I am being pushed down this road?
Thanks from C2
However I recently had a review and athough I explained that I did not want surgery, it is impractical as I needed to be in my position for two years to have any hope of job security(I had experienced unemployment when changing careers). However, I did feel that I was being 'gently pushed' down the road of surgery and the conculsion was I should see the surgeon anyway. I am not a regular site user but I have gone back and read the messages and I am getting mixed messages. The surgery was successful but also sight is not as good or no sight, although one KC said that he was still happy he had the surgery.
The consultant was talking about a new procedure 'a partial transplant' which just sends even more bells ringing in my head.
I dont really know what I want from you guys??!!??
I just feel that at this stage no one is listerning, may be the surgeon will? but I feel that I take the ultimate risk so I should be heard. I have no probs with my lenses, and especially compared to some KC messages which in those circumstances lenses are not helping I understand but in my situation I dont understand the logic.
Any words of wisdom why I am being pushed down this road?
Thanks from C2
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