Lynn
I am about to have a graft due to large central scarring caused by Hydrops but not Lenses........so abit different.
On a slightly same subject....I also wanted to raise a point about the way various eye hospitals or eye specialists treat eye conditions and there general attitude.......when I had my Hydrops 2 years back now I was in the North West of UK for a while. I then went to Manchester Eye Hospital where I was seen by,what I can only term as a useless excuse of a eye specialist.....and I say that with venegence!....I kid you not....I had woken up with a suspected caseof Hydrops so paniked and went to my nearest eye hospital.....there i was seen and alll the staff were extremely good and knew that I had a somewhat emergency.....if you want to call it that.......but low and behold...the person seeing me was just ....well I asked to be seen by someone else....the next follow up appt. This guy calls me in, tells me to sit down and then says "So whats wrong with you".......at this stage Im thinking.....OKKK Ill allow that attitude and continue as Im in pain..........................then I tell him that I a being seen at Moorefields and I wear Sclerals......so he says "well what am I doing here"......now at this stage...I would have smacked him in the mouth....not because Im that way inclined...but because how many other people must he have given this attitude........but I then proceeded to tell him that i moved to Manch for 12 months on work and woke up with what I suspect to be Hydrops......he then says "well shall I look at it....or are you sure that you have hydrops" in a really bad tone.......I still ignored this!!....so he says Yes you have Hydrops, here are Pupil Dialating drops and anti biotic drops...and you have to wait till it heals........nothing more I can do....
You have no idea how much my blood was boiling lol......to this day...i remember his name and face!...as I made a point of picturing him in my mind as I coudnt beleve someone could get away with talking to someone like this....!
Well thats my worse experience in the NHS / Eye Care dept....
Gathering more info...
Moderators: Anne Klepacz, John Smith, Sweet
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Hi Lynn,
I was first diagnosed in 2000, after a routine eye test through work. The optician at the time was very helpful and ask my GP to refer me to Kings College Hospital. After visiting there they confirmed I had KC, I was wearing glasses on for the work.
Not until late 2002 (early 2003) I realised it was getting worse, so again asked the GP to send me back to the Hospital for further tests, I found at that time Kings College were not the clued up with KC. After trying to fit me with normal lens, they refferred me to contact lens specailist within the hospital. After discussing the options he felt he had to refer me to Ken Pullen at Moorfields. After various vistis I finally got my hands on some Sclerals for my left eye, as my right has KC.
A month after wearing the one lens in my left eye, I had Hydrops in my right eye. As the Hydrops had not cleared sufficently in 4 months, the consultant said the scarring on my cornea was bad, therefore would need a Graft.
Up until last week I have on started wearing my scleral again and building up the wear time again
I was first diagnosed in 2000, after a routine eye test through work. The optician at the time was very helpful and ask my GP to refer me to Kings College Hospital. After visiting there they confirmed I had KC, I was wearing glasses on for the work.
Not until late 2002 (early 2003) I realised it was getting worse, so again asked the GP to send me back to the Hospital for further tests, I found at that time Kings College were not the clued up with KC. After trying to fit me with normal lens, they refferred me to contact lens specailist within the hospital. After discussing the options he felt he had to refer me to Ken Pullen at Moorfields. After various vistis I finally got my hands on some Sclerals for my left eye, as my right has KC.
A month after wearing the one lens in my left eye, I had Hydrops in my right eye. As the Hydrops had not cleared sufficently in 4 months, the consultant said the scarring on my cornea was bad, therefore would need a Graft.
Up until last week I have on started wearing my scleral again and building up the wear time again
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Janet Manning
- Regular contributor
- Posts: 98
- Joined: Thu 25 Mar 2004 9:44 am
- Location: Abingdon,Oxfordshire
Hi Lynn,
Diagnosed in 1982 at small local optician and referred to Moorfields, where I saw a doctor, who, though I'm sure was experienced, could not communicate with me in English. Left with no idea of outcome of consultation and all questions unanswered. Requested transfer to another hospital with an English speaking doc. (Guy's) This was to have very serious consequences 20 years later!
Wore RGPs for 30 yrs supplied by David Clulow in London and Kingston upon Thames and received excellent service. It was one of their optometrists, who had worked with KC at Newcastle hospital, who identified the worsening of my condition and referred me to hospital - Kingston Royal Eye unit. Had bilateral corneal transplants there in 1999.
Post op surgeon told me to go and get myself some specs and get back to work - a 60 hour a week academic job. The hospital optometrist meanwhile refused to prescribe me glasses - said they'd make me seasick because of disparity between eyes. I went to Optical Express in Kingston, who made me glasses that at least stopped me making cups of tea in upturned mugs!!!! - no more scalded feet!!! and I wasn't seasick.
Hospital optometrist gave me softperms and said these were the only lenses I could have. Could no longer tolerate RGPs post graft. 6 hours per day max wearing time for ever. He was kind and helpful and really tried to get the fit right. Had to take early retirement from work - couldn't manage job on 6 hours a day and couldn't drive with correction from these lenses.
I found out about sclerals, but he was adamant that I'd hate them, they were difficult to wear etc. I spent 6 weeks badgering the hospital for a referral to Moorfields. Finally got there to be asked why I'd had the grafts in the first place? Here's the link with 20 years earlier - maybe had I stayed with Moorfields, I'd not have had grafts so soon and would have tried sclerals earlier. I know medical opinion varies and I'm sure all decisions were made in good faith, but it just shows how chance plays a part in our medical destiny.
Anyway now have sclerals fitted by Ken and get regular 12 hours a day, with the odd mishap and having to rest an eye for a day or two. Oxford eye hospital optometrists are fantastic and have gone to huge trouble to make me better glasses, with a good prescription in one eye so that when I am without lenses I can cope better. Also have reading glasses for when I am without lenses, so that I can at least do a little work.
Hope this adds to your research Lynn.
Diagnosed in 1982 at small local optician and referred to Moorfields, where I saw a doctor, who, though I'm sure was experienced, could not communicate with me in English. Left with no idea of outcome of consultation and all questions unanswered. Requested transfer to another hospital with an English speaking doc. (Guy's) This was to have very serious consequences 20 years later!
Wore RGPs for 30 yrs supplied by David Clulow in London and Kingston upon Thames and received excellent service. It was one of their optometrists, who had worked with KC at Newcastle hospital, who identified the worsening of my condition and referred me to hospital - Kingston Royal Eye unit. Had bilateral corneal transplants there in 1999.
Post op surgeon told me to go and get myself some specs and get back to work - a 60 hour a week academic job. The hospital optometrist meanwhile refused to prescribe me glasses - said they'd make me seasick because of disparity between eyes. I went to Optical Express in Kingston, who made me glasses that at least stopped me making cups of tea in upturned mugs!!!! - no more scalded feet!!! and I wasn't seasick.
Hospital optometrist gave me softperms and said these were the only lenses I could have. Could no longer tolerate RGPs post graft. 6 hours per day max wearing time for ever. He was kind and helpful and really tried to get the fit right. Had to take early retirement from work - couldn't manage job on 6 hours a day and couldn't drive with correction from these lenses.
I found out about sclerals, but he was adamant that I'd hate them, they were difficult to wear etc. I spent 6 weeks badgering the hospital for a referral to Moorfields. Finally got there to be asked why I'd had the grafts in the first place? Here's the link with 20 years earlier - maybe had I stayed with Moorfields, I'd not have had grafts so soon and would have tried sclerals earlier. I know medical opinion varies and I'm sure all decisions were made in good faith, but it just shows how chance plays a part in our medical destiny.
Anyway now have sclerals fitted by Ken and get regular 12 hours a day, with the odd mishap and having to rest an eye for a day or two. Oxford eye hospital optometrists are fantastic and have gone to huge trouble to make me better glasses, with a good prescription in one eye so that when I am without lenses I can cope better. Also have reading glasses for when I am without lenses, so that I can at least do a little work.
Hope this adds to your research Lynn.
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Sue Ingram
- Regular contributor
- Posts: 53
- Joined: Fri 12 Mar 2004 9:58 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Woking, Surrey, UK
Hi Lynn, This is my story - diagnosed by local optician when I was 15 (1976), sent to local hospital who sent me straight to Moorfields. Wore hard corneal lenses initially, then rgp corneals. Did not really have any problems (other than sometimes a large mucus build-up) and used to wear the lenses from morning 'til night (as you do if you have KC!).
After about 10 years was referred to Prof Buckley at MEH just to see if it was time for a transplant in my right eye. Luckily, Prof Buckley asked how I coped with the vision out of my left (good) eye, whether the KC stopped me doing anything and was I OK wearing the lenses. He then said, although my right eye was quite conical, as I was coping, he did not see any reason for having a transplant.
After about 20 years my right eye had become very conical and I was having trouble keeping a lens in - kept pinging out! Moorfields were brilliant and although it took about a year and lots of lenses, they managed to make a lens for me that would stay in.
But then after about 25 years of CONSTANT wear I think my eyes just decided they did not want to have those 'orrible little bits of plastic in them any more! In the past, it had always been my right eye that had played up, so I just left the lens out for a day or two and carried on as I could see out of my left eye. However, this was now my left eye not tolerating the lenses any more - take that out and I am blind! I woke up one day with a pain like a red hot poker was being poked in my left eye. To cut a long story short, ended up with 5 weeks off work, wearing no lenses and then got referred to the famous Ken Pullum at MEH to be fitted with scleral lenses.
They are fantastic - if only I had been offered them earlier and it meant my eyes could have a rest from the corneals. I find sclerals much much more comfortable than rgp corneals, they can't fall out and can't get any dust behind them, can swim in them etc, etc. Unfortunately though, the sclerals do not correct my vision as well as corneals. Initially, I would wear the sclerals for half the day and then the corneals for the other half. It was very strange as my eyes would let me wear the corneals after I had had the sclerals in for at least 4 hrs, but they would not let me put them in first thing in the morning without having worn the sclerals - weird!
Then, I tried out some new lenses that Ken was making - sclerals that were closer to the eye. These were great and I could see brilliantly with them. When I was wearing them I did not know I had them in, but unfortunately when I took them out, my eyes really hurt (also prevented me wearing the corneals if I wanted to).
So, then I tried wearing a soft contact lens underneath these sclerals (piggy-backing) to try and help with this - it did a little but eventually had to give up on them. I also did piggy-backing for a while with my left rgp corneal (right eye too conical for the soft lens and rgp lens to stay on) and this helped with the comfort. During this time I was swapping between scerals and corneals.
Also tried coated scleral lenses via Ken to try and help with the over-production of mucus that I was getting. These have been brilliant and I have not really had any mucus since, only on those odd 'bad eye days'.
Have also tried mini-sclerals which were great comfort-wise and I think the vision was better, however, these sucked onto my eye so much that I could not get them out! One time, I thought I was going to have to go to the local hospital to get them to take them out but eventually managed to prise out myself in the end. These ended up being too stressful!
I now wear only scleral lenses, up to 16 hrs a day, and have glasses to wear with them to correct my vision for reading/computer/driving etc, which is fine as far as I am concerned as I want to try and stay off the operating table.
As you can see from the above, KC is definitely about finding the thing that works for you and everyone seems to be so different that what works for one does not work for another - but that's because all us KCers are so unique, of course!
Thanks for all your recent posts, Lynn, and looking forward to meeting you at the KC Conference in Birmingham. Good luck with your info gathering project. SUE
After about 10 years was referred to Prof Buckley at MEH just to see if it was time for a transplant in my right eye. Luckily, Prof Buckley asked how I coped with the vision out of my left (good) eye, whether the KC stopped me doing anything and was I OK wearing the lenses. He then said, although my right eye was quite conical, as I was coping, he did not see any reason for having a transplant.
After about 20 years my right eye had become very conical and I was having trouble keeping a lens in - kept pinging out! Moorfields were brilliant and although it took about a year and lots of lenses, they managed to make a lens for me that would stay in.
But then after about 25 years of CONSTANT wear I think my eyes just decided they did not want to have those 'orrible little bits of plastic in them any more! In the past, it had always been my right eye that had played up, so I just left the lens out for a day or two and carried on as I could see out of my left eye. However, this was now my left eye not tolerating the lenses any more - take that out and I am blind! I woke up one day with a pain like a red hot poker was being poked in my left eye. To cut a long story short, ended up with 5 weeks off work, wearing no lenses and then got referred to the famous Ken Pullum at MEH to be fitted with scleral lenses.
They are fantastic - if only I had been offered them earlier and it meant my eyes could have a rest from the corneals. I find sclerals much much more comfortable than rgp corneals, they can't fall out and can't get any dust behind them, can swim in them etc, etc. Unfortunately though, the sclerals do not correct my vision as well as corneals. Initially, I would wear the sclerals for half the day and then the corneals for the other half. It was very strange as my eyes would let me wear the corneals after I had had the sclerals in for at least 4 hrs, but they would not let me put them in first thing in the morning without having worn the sclerals - weird!
Then, I tried out some new lenses that Ken was making - sclerals that were closer to the eye. These were great and I could see brilliantly with them. When I was wearing them I did not know I had them in, but unfortunately when I took them out, my eyes really hurt (also prevented me wearing the corneals if I wanted to).
So, then I tried wearing a soft contact lens underneath these sclerals (piggy-backing) to try and help with this - it did a little but eventually had to give up on them. I also did piggy-backing for a while with my left rgp corneal (right eye too conical for the soft lens and rgp lens to stay on) and this helped with the comfort. During this time I was swapping between scerals and corneals.
Also tried coated scleral lenses via Ken to try and help with the over-production of mucus that I was getting. These have been brilliant and I have not really had any mucus since, only on those odd 'bad eye days'.
Have also tried mini-sclerals which were great comfort-wise and I think the vision was better, however, these sucked onto my eye so much that I could not get them out! One time, I thought I was going to have to go to the local hospital to get them to take them out but eventually managed to prise out myself in the end. These ended up being too stressful!
I now wear only scleral lenses, up to 16 hrs a day, and have glasses to wear with them to correct my vision for reading/computer/driving etc, which is fine as far as I am concerned as I want to try and stay off the operating table.
As you can see from the above, KC is definitely about finding the thing that works for you and everyone seems to be so different that what works for one does not work for another - but that's because all us KCers are so unique, of course!
Thanks for all your recent posts, Lynn, and looking forward to meeting you at the KC Conference in Birmingham. Good luck with your info gathering project. SUE
SUE 
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Sophie Bull
- Regular contributor
- Posts: 66
- Joined: Tue 06 Apr 2004 2:42 pm
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