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Child Item

Keratoconus

Shane732

I suffer from quite severe Keratoconus and am forced to buy RGP contact lens. I've been wearing the lens for about 3 years now - in one eye first and then both eyes.

In 3 years I've spent about €3,500 on lens due to them falling out and breaking etc...

I've been to an Ophthalmologist but wasn't very happy with him.

I wondering if any knows a good Ophtalmologist who specialises in the area of Keratoconus?

Thanks

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numbskull20

I have a question.

Yesterday I got my first RGP lens for my left eye. I was instructed by Dr. O' Malley that I was to wear the lens for 1.5 hours on the first day and increase by 30 minutes every subsequent day.

Later on yesterday evening I put in my lens and watched tv. After about an hour I fell asleep and didn't wake up till six hours later. I had been up all the night before and couldn't sleep on the train to Dublin either so I was very tired.

Anyway, could I have done any harm to my eye? It feels fine. Should I carry on as normal today and wear for 2 hours?

tashiusclay

numbskull20 wrote: »

I have a question.

Yesterday I got my first RGP lens for my left eye. I was instructed by Dr. O' Malley that I was to wear the lens for 1.5 hours on the first day and increase by 30 minutes every subsequent day.

Later on yesterday evening I put in my lens and watched tv. After about an hour I fell asleep and didn't wake up till six hours later. I had been up all the night before and couldn't sleep on the train to Dublin either so I was very tired.

Anyway, could I have done any harm to my eye? It feels fine. Should I carry on as normal today and wear for 2 hours?

I think any 'damage' from initial over wearing, tends to be in the form of eye redness/discomfort the following day, I'd say just carry on building up the wear time as normal if the eye feels fine as you say

The Bogman

Hi there,
I was with my local optician today and i was diagnosed with keratoconus. I'm 21 and never had eye problems or wore glasses before. I wouldn't think of myself as having bad eyesight and its only in the last few months that I've had problems. Almost the only times that I have problems is when I'm reading. In day to day life and playing sport, I haven't noticed much if any changes. It seems to be exclusively reading/making out words. Whether its a newspaper, book, laptop or the television. In the past couple of months, I almost have to have a book pressed against my nose to read it. The optician told me i have 55-60% vision, which surprised me, and also that I'm both short-sighted and long-sighted.
Just wondering if anyone else has had similiar experiences, thanks

bootybouncer

The Bogman wrote: »

Hi there,
I was with my local optician today and i was diagnosed with keratoconus. I'm 21 and never had eye problems or wore glasses before. I wouldn't think of myself as having bad eyesight and its only in the last few months that I've had problems. Almost the only times that I have problems is when I'm reading. In day to day life and playing sport, I haven't noticed much if any changes. It seems to be exclusively reading/making out words. Whether its a newspaper, book, laptop or the television. In the past couple of months, I almost have to have a book pressed against my nose to read it. The optician told me i have 55-60% vision, which surprised me, and also that I'm both short-sighted and long-sighted.
Just wondering if anyone else has had similiar experiences, thanks

yes champ I was fine until about 21 too, and then bang it hit me..............if you can get on top of it.........I let it go for too long before I got something done about it........................you will feel it more in the winter too, with the dark nights mornings etc

glineli

Hi

Just an update from my last visit to the Wellington. So it was my 3 month check up on my right eye after CK and CXL. Claire tried to fit me as best she good for a soft contact, however no matter what she tried nothing seemed to improve my vision. So we are happy to leave that as it is. The left eye, i will need to get an rgp contact. I hope they have moved a long way in comfort since the early 2000's. Claire thinks i will find this new contact a lot more comfortable, but she said everyone is different. So to sum up, looks like i just need a contact for left eye and will be getting fitted in October

Shane732

glineli wrote: »

Hi

Just an update from my last visit to the Wellington. So it was my 3 month check up on my right eye after CK and CXL. Claire tried to fit me as best she good for a soft contact, however no matter what she tried nothing seemed to improve my vision. So we are happy to leave that as it is. The left eye, i will need to get an rgp contact. I hope they have moved a long way in comfort since the early 2000's. Claire thinks i will find this new contact a lot more comfortable, but she said everyone is different. So to sum up, looks like i just need a contact for left eye and will be getting fitted in October

Sorry I've forgotten what stage you were at before treatment. What stage are you at after CK and CXL? Are you wearing a lens in the eye you had it done on?
?

glineli

Shane732 wrote: »

Sorry I've forgotten what stage you were at before treatment. What stage are you at after CK and CXL? Are you wearing a lens in the eye you had it done on?
?

I had CK and CXL done in both eyes. The left eye was done last November. The procedures were done with 24 hours of each other. The right was done in April, again within 24 hours. Dr Cummings is hoping that the CK will reshape the cornea and CXL will lock that new shape down.

Before i had either done, i was wearing rgps in both eyes. My left cornea was very bad, i was very close to needing a transplant. So thankfully thats not even mentioned now and the right one is very good, 3 months post op. While Claire said it could be somewhat improved no lens seemed to help so its as it is, without any contact

tashiusclay

glineli wrote: »

The left eye, i will need to get an rgp contact. I hope they have moved a long way in comfort since the early 2000's.

Clare has fitted me with 14mm SoClear mini scleral rgp's, I have no prior experience with any type of contacts up to now, but I have to say once you get the correct fitting pair, I find them very comfortable, I wouldn't know I'm wearing them most of the time, and dust isn't a big issue with them either.

Shane732

glineli wrote: »

I had CK and CXL done in both eyes. The left eye was done last November. The procedures were done with 24 hours of each other. The right was done in April, again within 24 hours. Dr Cummings is hoping that the CK will reshape the cornea and CXL will lock that new shape down.

Before i had either done, i was wearing rgps in both eyes. My left cornea was very bad, i was very close to needing a transplant. So thankfully thats not even mentioned now and the right one is very good, 3 months post op. While Claire said it could be somewhat improved no lens seemed to help so its as it is, without any contact

Are you currently wearing no lens? Just how bad was your keratoconus before the procedure? If I'm not wearing any lens then I'm basically blind, certainly couldn't drive or function without a lens.

Ok so you're six months done on the left eye and going back into RGP lens in Oct?

Is your vision better now than it was pre-op?

I apologise for the questioning. I've had CK and CXL on my left eye and it was a complete and utter failure. The shape of my left cornea was terrible before the operation but my optician was somehow able to get a small rgp lens onto my eye which gave me good vision. Since I've had the operation I haven't been able to find a lens that is comfortable and gives me decent vision. I was told that the shape of my cornea had improved significantly, however when I actually went to my own optician it transpired that it hadn't. The only option for my left eye now is a transplant.

What's your vision currently at without a lens?

By the way the SoClear lens are the scourge of the earth.

tashiusclay

Shane732 wrote: »

By the way the SoClear lens are the scourge of the earth.

Why do you say that?

And also, how many years have you had your Kc, i.e. what stage would you say its at now in both eyes?

glineli

Shane732 wrote: »

Are you currently wearing no lens? Just how bad was your keratoconus before the procedure? If I'm not wearing any lens then I'm basically blind, certainly couldn't drive or function without a lens.

Ok so you're six months done on the left eye and going back into RGP lens in Oct?

Is your vision better now than it was pre-op?

I apologise for the questioning. I've had CK and CXL on my left eye and it was a complete and utter failure. The shape of my left cornea was terrible before the operation but my optician was somehow able to get a small rgp lens onto my eye which gave me good vision. Since I've had the operation I haven't been able to find a lens that is comfortable and gives me decent vision. I was told that the shape of my cornea had improved significantly, however when I actually went to my own optician it transpired that it hadn't. The only option for my left eye now is a transplant.

What's your vision currently at without a lens?

By the way the SoClear lens are the scourge of the earth.

I am not wearing any lens at the moment. My vision improved massively. Beforehand they said i should not have driven and it was a miracle i didnt crash. I found the lens too sore before hand, i could barely wear them long enough for a round of golf. Since the op the vision improvement is massive, even they are surprised by the improvement. Sorry i dont have the numbers to hand, but the new shape is a hge improvement. How long did you have between the CK and CXL?

So stay away from SoClear?

Shane732

glineli wrote: »

I am not wearing any lens at the moment. My vision improved massively. Beforehand they said i should not have driven and it was a miracle i didnt crash. I found the lens too sore before hand, i could barely wear them long enough for a round of golf. Since the op the vision improvement is massive, even they are surprised by the improvement. Sorry i dont have the numbers to hand, but the new shape is a hge improvement. How long did you have between the CK and CXL?

So stay away from SoClear?

I think the Wellington are very keen on SoClear. There's different sizes but I find them seriously uncomfortable. I'm trying to wear an 11mm one at the moment and it's tortuous. I wouldn't go back to the Wellington in a million years and shouldn't have gone in the first place.

Ok I'd say mine was worse than yours starting off. I just couldn't drive pre op without a lens, it wasn't an option. Having said that my vision was fine with a small rgp lens.

I had CK and CXL on the same day. Originally he had intended to do it 24 hours after but he decided that the shape was "so good" that he'd "lock it in" immediately. It's basically a load of bull. The fact of the matter was that there wasn't enough fibres left in my cornea to bond the shape together and thus the shape reverted back (well not exactly, it's worse now because I have a ring burnt on to my eye). The last time I saw him I asked the question whether other people who had the treatment had gone backwards. The answer was yes but not to the extent mine had.

I'm not saying to people don't have CX or CXL but don't believe the marketing that comes with it. It's an excellent treatment when it works but it's risky business. At the end of the day there's very little known about the treatment and the long term effects of it. What works in the short term may not work in the long term. It's an individual decision that people have to make but remember you are playing with your vision.

At the end of the day the shape of the cornea is irrelevant, it's the vision that matters. Don't worry about the shape, worry about what your vision is like. Have you got normal vision without a lens now?

glineli

Shane732 wrote: »

At the end of the day the shape of the cornea is irrelevant, it's the vision that matters. Don't worry about the shape, worry about what your vision is like. Have you got normal vision without a lens now?

I have normal vision without a lens now, so i am very happy with that. Its quite concerning how yours has gone back so much. I have to say a lot of the tech talk goes over my head, the result for me is based on what letters i can read.

Disappointed also with your experience from the Wellington, so far i can only say good things about them.

super106

Anyone attended any keratoconus events in dublin?

So few of us out there

NealB

I've never heard of any KC events, are there any?

super106

NealB wrote: »

I've never heard of any KC events, are there any?

Thats what annoys me, we are the only country on the planet that dont know or do anything for it, i was hoping someone would know of kc group here

bootybouncer

super106 wrote: »

Thats what annoys me, we are the only country on the planet that dont know or do anything for it, i was hoping someone would know of kc group here

an irish only fb group would be a good idea

S.M.B.

The UK KC group is fantastic. It's a real shame there isn't one in Ireland.

Someone started a facebook group recently enough but closed it soon after due to a lack of interest. It felt like a very hasty move imo.

If I was in Ireland I'd definitely be putting effort into getting something up and running.

Peter Crowe

I know I'm late to this discussion but I thought any input may be useful. Im 33 years old and wad diagnosed with kerataconus 4 years ago. I too was told to attend a certain clinic and was told I needed a transplant asap lol I was then getting fitted for lenses by Mary Eustace who is fantastic, but I was never told to get crosslinking done first to stop the progression so I spent 2 years getting fitted but they never worked due to my eye changing shape every time ! I get fed up and then my daughter was born with a heart defect a year and a half ago so all my attention went on her and my eyes became a second thought. I have recently returned to specialists and my eyes have progressed again where my left eye is on the verge of a cornea transplant (I'm right handed, so that idea of your eye being worse depending on if your right or left handed is wrong). I was going to get the crosslinking and intacs here in blackrock but I have decided to travel to California for a procedure which has seen great results. Some patients who could not see 8 foot in front of them now have 20/20 vision with no glasses !!!!
I found it very hard to make this decision as it is expensive and there is no funding from the HSE for procedures in the US. I fly out on the 21st of October 2013 and my procedure is on the 23rd. I hope to come home and preach the good work done but I am extremely anxious about the whole thing as all my hopes are riding on this as I'm very irritable and find myself very angry at those who are close to me. There really isnt enough being done here in Ireland to aid people with this condition.
If this op is a success you will hear about it here and I will be more than willing to talk to anyone personally if there want any info or want to know about my experience over there.
I hope to talk soon

Lolo55

Dear Peter.
I am so sorry to hear your story and for all you have been through the past four years. Hope also your little daughter is recovering. My son had cross-linking done in Blackrock almost two years ago just on one eye (the one that was giving him trouble). He has been in Germany since studying but was home this past weekend and went for his check up to Blackrock on Monday. Mr. Power did some scans and there has not been any deterioration since. I just cannot believe that you were not told of the cross-linking. My son saw a specialist in Limerick who referred him to Mr. Power as I understand he was on the Late Late show sometime back.

I sincerely wish you all the very best with your operation in Calafornia and will keep you in my thoughts. I do believe it will work out as good as the other patient for you. You deserve it. LOLO

Peter Crowe

Hi LOLO,
I was going to get the crosslinking and intacs with Mr. Power at the end of this month but the has not done many intac procedures and his results were not as positive as the specialist I will be seeing in California. They guy In CA invented this procedure and has been doing it for the past 20 years and had 3-4 patients a week and has a great track record. I hope to bring back good news

Michael O Toole

That's interesting, Peter. May i ask what the US procedure is? is it crosslinking?

Michael

Peter Crowe

Its a form of cross linking called 'holcomb C3R' with the intacts first, its all done in one day so there is no waiting around for nearly a year for everything to be done !

super106

Great to hear someone else thinking the same, whats the procedure called your having in us ?

Best of luck too

Peter Crowe

Its called the Holcomb C3R process the guys name is Brian Boxer Wachler. If you you tube him you will see past patients

glineli

Peter Crowe wrote: »

Its called the Holcomb C3R process the guys name is Brian Boxer Wachler. If you you tube him you will see past patients

Best of luck with it.

I was with Dr Cummings yesterday and i must say i cant recommend him highly enough, just a pleasure to visit. Almost a year on from my left eye having crosslinking and CK, the left eyes shape is still improving. My right eye is also improving 6 months on. He said dont waste money buying lenses or anything now as it would be a waste at the moment

Finnymurph

Hope to hear back from you soon Peter as I'm very interested in hearing how you got on in the states. My son is going to see Dr. Cummings soon in Dublin as he has kc.

Michael O Toole

I was having terrible difficulty with RGP lenses, specifically the one in my right eye. I couldn't actually wear it. But i went to Donal O'Malley and he did the piggy back thing with a soft lens underneath. It's only been a few days, but the change is incredible. It is so comfortable and am considerably less photosensitive.
Really happy.

Peter Crowe

Well I'm back from the states, I took a few extra days to celebrate the success in Vegas

the difference in the shape of my eye in just 24 hours was amazing ! I havnt worn my glasses or lenses since the op but I will get normal contacts in another week or two to help my vision until my eyes fully settle which the surgeon said will take 4-6 months ! I would really recommend the procedure, I have the graphs to shoe the before and after in just 24 hours but I will also be getting another one done in 2 months, I'm really looking forward to that one

if anyone would like to phone my to ask any questions I would be happy to talk to anyone

S.M.B.

Hi Peter, was there no concern with having cross linking done on an eye that was 'on the verge of a cornea transplant'? I would have thought corneal thickness would be a real concern.

I've always been told that I'm long past the point where C3R is a possibility due to how advanced my KC is.