Quicktopic posts: Feb 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Kelly Baker
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Janet Manning
Hi Robert,
Having a couple of stitches out to adjust tension was no problem, just a bit sore for about 2 days. They put anaesthetic drops in and you just stick your head in the usual contraption they use for examining the eyes.
I had the rest out in both eyes all in one go so they put me in theatre again with anaesthetic drops, so not painful. Only problem was that I'm now so photophobic and the theatre lights were hard to bear. I had tears pouring into my ears the whole time!!!! - about half an hour in all.
Went home and went to bed for the afternoon and needed one of the 'industrial strength' painkillers I had for after the 2nd op. (Paracetamol having failed me the first time!!) Next day heaps better - just a bit scratchy for a couple of days. Main problem was having to use steroid drops again for a month and so no lenses. With no glasses I was back to 'What chart? Where? This problem was partly because I had the grafts done only 4 months apart - my choice. More widely spaced I would at least have had one eye operational.
Good Luck!
Janet
Having a couple of stitches out to adjust tension was no problem, just a bit sore for about 2 days. They put anaesthetic drops in and you just stick your head in the usual contraption they use for examining the eyes.
I had the rest out in both eyes all in one go so they put me in theatre again with anaesthetic drops, so not painful. Only problem was that I'm now so photophobic and the theatre lights were hard to bear. I had tears pouring into my ears the whole time!!!! - about half an hour in all.
Went home and went to bed for the afternoon and needed one of the 'industrial strength' painkillers I had for after the 2nd op. (Paracetamol having failed me the first time!!) Next day heaps better - just a bit scratchy for a couple of days. Main problem was having to use steroid drops again for a month and so no lenses. With no glasses I was back to 'What chart? Where? This problem was partly because I had the grafts done only 4 months apart - my choice. More widely spaced I would at least have had one eye operational.
Good Luck!
Janet
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Freddy Bull
Dear John
Yes I was driving six months post graft and it is great. I used to get lots of multiple image and I got to the stage where I could not quite see the brake lights of the real car in front of me - if you see what I mean. Hence I had to stop driving!
I was able to drive in late September, after an op in April. I had continued to wear an old pair of specs, mostly for my "good" eye, until I started to drive but then choose to have a cheap pair made up, with a new prescription. I knew I still had a lot of changes to come as the graft settles down so I knew that they would not last long. Neither the cl fitter nor the surgeon were keen to let me have cls on the stitches, though it can be done I believe.
I had the stitches out in one go in early November. This was a bit earlier than we had planned but the surgeon felt I would not get any further benefit from them. I am really quite short sighted in the operated eye now, but the image is single, not multiple!
I was told in December (one month after the stitches were taken out) I could have new, permanent lenses for glasses and that I could try contacts. It takes a while to get an appointment with my cl fitter and then the wait for the manufacture of the lenses. So I have had them only a few weeks. In fact getting the correct fit has been a problem. I still have a residual steep cornea, not because of the KC but as a result of the shape of the donor cornea. So I am about to try a third cl on the operated eye. But I really can see so much, so I have been able to be patient.
I used to wear rgps but I am trying soft torics cls this time. They are more comfortable and don't get blown out by the wind, as my rgps did! So hopefully when the fit is correct I shall be able to switch between glasses and cls readily.
Sorry to waffle on but I am really proud of what the doctor, fitter and I have been able to achieve! All would have been impossible without a family who made a brave decision when a loved one died!
Freddy, Northamptonshire.
Yes I was driving six months post graft and it is great. I used to get lots of multiple image and I got to the stage where I could not quite see the brake lights of the real car in front of me - if you see what I mean. Hence I had to stop driving!
I was able to drive in late September, after an op in April. I had continued to wear an old pair of specs, mostly for my "good" eye, until I started to drive but then choose to have a cheap pair made up, with a new prescription. I knew I still had a lot of changes to come as the graft settles down so I knew that they would not last long. Neither the cl fitter nor the surgeon were keen to let me have cls on the stitches, though it can be done I believe.
I had the stitches out in one go in early November. This was a bit earlier than we had planned but the surgeon felt I would not get any further benefit from them. I am really quite short sighted in the operated eye now, but the image is single, not multiple!
I was told in December (one month after the stitches were taken out) I could have new, permanent lenses for glasses and that I could try contacts. It takes a while to get an appointment with my cl fitter and then the wait for the manufacture of the lenses. So I have had them only a few weeks. In fact getting the correct fit has been a problem. I still have a residual steep cornea, not because of the KC but as a result of the shape of the donor cornea. So I am about to try a third cl on the operated eye. But I really can see so much, so I have been able to be patient.
I used to wear rgps but I am trying soft torics cls this time. They are more comfortable and don't get blown out by the wind, as my rgps did! So hopefully when the fit is correct I shall be able to switch between glasses and cls readily.
Sorry to waffle on but I am really proud of what the doctor, fitter and I have been able to achieve! All would have been impossible without a family who made a brave decision when a loved one died!
Freddy, Northamptonshire.
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Dave Hamblett
Hi all
been a couple of weeks since i left a message but have been interested to read everones comments.
As for how many people have KC my specialist said it varies between 1 in 10000 and 1 in 3000 depending on which bit of the country your in! he said it was particularly high in 16 - 25 yr olds (im 23) around here (Nuneaton nr. Coventry).
I feel very lucky as i have rgp contacts and suffer little discomfort though i find taking them out and adding a little wetting sol a couple of times a day does wonders to start with.
any one else around cov posting i would be interested to here how many people round these parts are on the web site?
Best whishes
Dave Hamblett
davehamblett@hotmail.com
>From: Quick Topic daily digest
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: davehamblett@hotmail.com
>Subject: Keratoconus
>Date: Thu, 14 Feb 2002 22:58:59 -0600 (CST)
>
_________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail.
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< replied-to message removed by QT >
been a couple of weeks since i left a message but have been interested to read everones comments.
As for how many people have KC my specialist said it varies between 1 in 10000 and 1 in 3000 depending on which bit of the country your in! he said it was particularly high in 16 - 25 yr olds (im 23) around here (Nuneaton nr. Coventry).
I feel very lucky as i have rgp contacts and suffer little discomfort though i find taking them out and adding a little wetting sol a couple of times a day does wonders to start with.
any one else around cov posting i would be interested to here how many people round these parts are on the web site?
Best whishes
Dave Hamblett
davehamblett@hotmail.com
>From: Quick Topic daily digest
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: davehamblett@hotmail.com
>Subject: Keratoconus
>Date: Thu, 14 Feb 2002 22:58:59 -0600 (CST)
>
_________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail.
http://www.hotmail.com
< replied-to message removed by QT >
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Tony Stigle
This discussion page is part of the U K Keratoconus Self Help and Support Groups web site at. http://www.keratoconus-group.org.uk It seems from he entries & hits counter that some readers & contributors are not logging in via the site and thus missing out on many of the useful pages, links, News letters etc there... It is with the Keratoconus Self Help and Support that you are invited to register..
Tony..
Tony..
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Amanda Stigle
I'm afraid I have only just regained access to the net at home. Won't bore you with the long story!Great timing! The address to e-mail is "Info@Keratoconus.group.org.uk", or you can write to:
Keratoconus Group
P.O. Box 26251
London. W3 9WQ
This information as Tony mentioned can be found on this site, on the news letter under the main directory.I think this high lights the need to have membership Registration details more prominantly placed.
Keratoconus Group
P.O. Box 26251
London. W3 9WQ
This information as Tony mentioned can be found on this site, on the news letter under the main directory.I think this high lights the need to have membership Registration details more prominantly placed.
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Amanda Stigle
oops sorry, this information is also in the main directory under "How to contact us."
Dave Hamblett, have you seen "contact the locals" page, I think caroline in Leamington Spa is your nearest contact that has registered on the locals page.
Is there any one from Scotland out there? Last March after our first National Conference, ELizabeth from Scotland asked for her details to be put on the locals page. Almost a year later no one else from Scotland has come forward and registered. Surely she is not the only one who has access to the net and e-mail in Scotland?!
As alot of us know it is great to discuss all sorts of KC related issues with another who has KC, also some one else who knows a good local opticians, or attends the same hospital, knows the Dr's you may be about to meet for the first time, or to meet up with maybe, or not as the case may be! Just to know there is someone in your area who you can contact if you need to is very reassuring.
Dave Hamblett, have you seen "contact the locals" page, I think caroline in Leamington Spa is your nearest contact that has registered on the locals page.
Is there any one from Scotland out there? Last March after our first National Conference, ELizabeth from Scotland asked for her details to be put on the locals page. Almost a year later no one else from Scotland has come forward and registered. Surely she is not the only one who has access to the net and e-mail in Scotland?!
As alot of us know it is great to discuss all sorts of KC related issues with another who has KC, also some one else who knows a good local opticians, or attends the same hospital, knows the Dr's you may be about to meet for the first time, or to meet up with maybe, or not as the case may be! Just to know there is someone in your area who you can contact if you need to is very reassuring.
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Sue B - Hertfordshire
Has anyone else been having problems with Alcon Aerosol saline? Three of the last four cans that I have attempted to use appear to have something wrong with the nozzles. Basically, you press the top and get a mere trickle of saline instead of the usual spurt. All of mine have come from the pharmacy at Moorfields (Lot DF850A - expiry 2002-06). It may be a bad batch. Before I contact the manufacturers I'd like to know if anyone else has experienced a similar problem. Thanks.
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Shelley
Hey Dave,
I'm not in your area, but I didn't know about the age variation thing depending on region - it must be high in my area as I knew at least one other person with KC when I was at school. I was diagnosed when 15/16 and am now 20. That was really interesting to know - I'm fairly new to all this technical talk though - I was told I needed surgery last Saturday!
Incidentally, Sue B - which part of Herts are you from? I'm in St. Albans. Is there a regional/local group you know of?
Thanx!
Shelley xxx
<a href="mailto:the-boss@little-miss-alien.co.uk">Email</a>
I'm not in your area, but I didn't know about the age variation thing depending on region - it must be high in my area as I knew at least one other person with KC when I was at school. I was diagnosed when 15/16 and am now 20. That was really interesting to know - I'm fairly new to all this technical talk though - I was told I needed surgery last Saturday!
Incidentally, Sue B - which part of Herts are you from? I'm in St. Albans. Is there a regional/local group you know of?
Thanx!
Shelley xxx
<a href="mailto:the-boss@little-miss-alien.co.uk">Email</a>
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Sue B - Hertfordshire
Shelley,
I'm just down the road from you in Welham Green. I was diagnosed when I was 17 and initially told I may need surgery by the time I was 30. I've just celebrated my 43rd birthday and am still coping with RGP's but its not all been plain sailing.
I am not aware of any local groups - if there is one perhaps someone reading this will let us know.
If you want to discuss anything, feel free to e-mail me (Sueburbidge@aol.com)
Good luck with the surgery.
Sue
I'm just down the road from you in Welham Green. I was diagnosed when I was 17 and initially told I may need surgery by the time I was 30. I've just celebrated my 43rd birthday and am still coping with RGP's but its not all been plain sailing.
I am not aware of any local groups - if there is one perhaps someone reading this will let us know.
If you want to discuss anything, feel free to e-mail me (Sueburbidge@aol.com)
Good luck with the surgery.
Sue
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