[Dero]

Originally Posted by bambi215

Hey all, ive recently been diagnosed with keratoconus... Reasonable bad in.left eye and a little bad in right eye. I visted Mary Eustace in dublin today and she put me so at ease. I still have a lot of worries esp about lookin.in cross linking and if it may b an option.for me in the future. But i am sure all my concerns will b dealt with as we move forward i am worried about the.lenses n the fitting hopefully it wont be to scary

I've had lots of lens fittings with Mary and never had any issues. She really does know her stuff with regard to lenses. I have to go back shortly to get fitted in my right eye after my cornea transplant (no CXL magic for me ).

Anyway, good luck. I've had KC for almost 25 years and the lenses are fine really. Sure they're a hassle and a pain on dusty days etc., but you do get used to it and it's better to be able to see. :-)

[eddiem74]

Originally Posted by irishproduce

Folks,

Got my appointment with Blackrock (Wiliam Power) after being referred for CXL by Ms Cleary in Limerick.
Have to bring €180 with me on the day :-)

Can anyone tell me what is the craic on the day.
Is this it like, straight into the surgery that day? I am gonna ring em to confirm tomorrow anyway.
Ms Cleary told me the worst case scenario is that it wont improve but it wont get worse as a result of the CXL

irish

I didn't go to Blackrock, although was referred there initially but after doing some reading changed to attend the Wellingtion Eye Clinic and Dr. Cummings instead. I can only speak from my own situation but have no complaints as a result of attending the Wellington although I have nowhere to compare against either.

It was €100 for my first visit, and they carried out various scans and eye tests, then I met with Dr. Cummings to review results and assess options.

I ended up going for SimLC (Laser & CXL at once) and at each 'free' follow-up appointment all scans and test are repeated and reviewed to assess improvement and watch for things to stablize also.

So far so good for me....

Best of luck with your appointment, hope you are a good candidate.

[Irishdiaspora]

I had CXL on my right eye just over a year ago with William Power in the Blackrock Clinic.

€1,800 for the procedure, €100 for the first follow up visit and €180 for check ups since.

On the day, I went in early, just before 8 and was out and on my way home before lunch. Had a lot of pain for the first two days and slept a lot - probably helped by the pain killers!

The pain I had previously been encountering in my right eye has gone away since the CXL. However, my vision in that eye is no where near as good as it was before the surgery (I cant read this screen whilst typing with my right eye alone).

I am having CXL on my left, and formerly good, eye next month which is making me very nervous. I'm 34 and KC was only diagnosed when I went in for a free assesement for laser surgery about 18 months ago. It's happened pretty quickly since then.

[Shane732]

Well just as an update on where I'm at;

As a said earlier in the thread I had Keraflex on my left eye in January. The procedure itself was fine and while there was discomfort afterwards it was nothing that I couldn't handle.

Unfortunately in my opinion the procedure hasn't been very successful. I'm nearly 6 months after the treatment and I still haven't manage to get back into a regular lens in my left eye. Prior to the procedure I could get a lens into my eye and the vision came up quite well (normal vision). Now I can't get a lens to stabilize properly in my left and needless to say the vision without a lens is awful.

All in all I don't view the procedure as being a success. Naturally I'm being told that the shape of the cornea is now much better. Unfortunately, that isn't of much benefit to be if I can't see out of the eye!

[eddiem74]

Originally Posted by Irishdiaspora

I had CXL on my right eye just over a year ago with William Power in the Blackrock Clinic.

€1,800 for the procedure, €100 for the first follow up visit and €180 for check ups since.

On the day, I went in early, just before 8 and was out and on my way home before lunch. Had a lot of pain for the first two days and slept a lot - probably helped by the pain killers!

The pain I had previously been encountering in my right eye has gone away since the CXL. However, my vision in that eye is no where near as good as it was before the surgery (I cant read this screen whilst typing with my right eye alone).

I am having CXL on my left, and formerly good, eye next month which is making me very nervous. I'm 34 and KC was only diagnosed when I went in for a free assesement for laser surgery about 18 months ago. It's happened pretty quickly since then.

So if your vision is now worse in your right eye, why would you have surgery in the left? I know after CXL it can take some time for the eye to settle down, so from your follow-ups have you now seen consistent scans which show things have stabilized/progression has stopped?

Additonally on the fees you are being charged the Wellington is only €1,500 for CXL and then free for follow-ups/check-ups for 12 months. I don't work for them or have any association other than being a patient, but seen as you provided costs I said I would share theirs given the current economic climate. Initial consultation is €100 if you fancy a 2nd opinion.

[eddiem74]

Originally Posted by Shane732

Well just as an update on where I'm at;

As a said earlier in the thread I had Keraflex on my left eye in January. The procedure itself was fine and while there was discomfort afterwards it was nothing that I couldn't handle.

Unfortunately in my opinion the procedure hasn't been very successful. I'm nearly 6 months after the treatment and I still haven't manage to get back into a regular lens in my left eye. Prior to the procedure I could get a lens into my eye and the vision came up quite well (normal vision). Now I can't get a lens to stabilize properly in my left and needless to say the vision without a lens is awful.

All in all I don't view the procedure as being a success. Naturally I'm being told that the shape of the cornea is now much better. Unfortunately, that isn't of much benefit to be if I can't see out of the eye!

Hi Shane,

That's not good. So what options are there? Live with it, further surgery or ? I had SimLC not sure that is the same as Keraflex, not looked into that but I never wore lenses or glasses prior.

Eddie

[Shane732]

Originally Posted by eddiem74

Hi Shane,

That's not good. So what options are there? Live with it, further surgery or ? I had SimLC not sure that is the same as Keraflex, not looked into that but I never wore lenses or glasses prior.

Eddie

No SimLC is a different procedure to Keraflex.

I hope that eventually I will get a lens to stablise in my eye and get ok vision from it. One thing for certain is that the vision will never be as good as it was prior to the procedure.

If I can't get a lens then the only other option would be a corneal graft but this would absolutely be a last ditch option. I could get cross linking done again but I don't think it would really help.

Can I ask why you had SimLC? How was your vision prior to the treatment? Did you ever try lens prior to it?

Having gone on the road I'm on I feel that a lot of people tend to get cross linking/SimLC/Keraflex without proper knowledge of the actual procedure.

In my opinion the best option at present is to stick with lens if you can. As time progresses the treatments available will also improve and there will be further information available on them. Ok the Keratoconus may progress as well but I think the wait and see option is the best approach.

I have Keratoconus in both eyes but under no circumstances would I consider having SimLC on my right eye at present (my right eye isn't as far progressed therefore I don't need Keraflex at present).

[eddiem74]

Originally Posted by Shane732

Can I ask why you had SimLC? How was your vision prior to the treatment? Did you ever try lens prior to it?

Well my vision in my right eye was pretty bad, I could not see any banners on the TV if I closed my left eye and also could not even easily read an email from 18-24inches away from a screen. I just spotted it out of the blue one day when watching TV and thought it was time for glasses. Went to the optician and within 5mins they stopped my eye exam and said they suspected KC but wanted to refer me to be sure. I was going to the Blackrock clinic but then research lead me to change my mind and head to the Wellington and Dr. Cummings.

At my initial consultation Dr. Cummings confirmed I had KC in both eyes however my right eye was by far the worse. He was looking to adopt a wait and see approach as we now had a baseline of scans, etc... I stated (in a nice way) that my vision was quite poor in my right eye and I was frankly expecting glasses or something to improve it at a minimum. As I had KC and expressed a strong interest in improving my vision, the coversation turned to SimLC being an option as I had sufficient corneal thickness to be a candidate. So we agreed to give SimLC a whirl last September if I recall correctly.

Since then all my scans are showing an improvement although things still have not settled down 100%. My vision in the right eye appears to be fluctuating a bit however I am just rolling with it to see what happens. There is some suggestion that my brain is re-training to use the right eye as it had such a reliance on the left, various eye tests carried out on both my eyes by Dr. Cummings seem to back this up so I am just waiting to see where things stand once everything is 100% settled and will then assess next steps. Scans from my last visit even showed an slight improvement in KC in my left eye.

So thats where I am at currently, next appointment is not till Septemeber which will be my 1 year review.

[Irishdiaspora]

Originally Posted by eddiem74

So if your vision is now worse in your right eye, why would you have surgery in the left? I know after CXL it can take some time for the eye to settle down, so from your follow-ups have you now seen consistent scans which show things have stabilized/progression has stopped?

Additonally on the fees you are being charged the Wellington is only €1,500 for CXL and then free for follow-ups/check-ups for 12 months. I don't work for them or have any association other than being a patient, but seen as you provided costs I said I would share theirs given the current economic climate. Initial consultation is €100 if you fancy a 2nd opinion.

It's a good question and one that is very much on my mind. I suppose it's a question of halting the decline generally. Hopefully, the quality of the vision will settle down shortly such that I can get glasses. For the last while it would have been pointless as the vision in my right eye has been all over the place.

Thankfully, the scans have showed that the progresson has stabalised which is great news.

I think I will give the Wellington a call tomorrow, thanks for the info. I had a bit of fun with Quinn (as they then were) at the time. The initially said they would cover the cost of the procedure, save for the first €250, but have since gone back on their word. Every little helps...

[eddiem74]

Originally Posted by Irishdiaspora

It's a good question and one that is very much on my mind. I suppose it's a question of halting the decline generally. Hopefully, the quality of the vision will settle down shortly such that I can get glasses. For the last while it would have been pointless as the vision in my right eye has been all over the place.

Thankfully, the scans have showed that the progresson has stabalised which is great news.

I think I will give the Wellington a call tomorrow, thanks for the info. I had a bit of fun with Quinn (as they then were) at the time. The initially said they would cover the cost of the procedure, save for the first €250, but have since gone back on their word. Every little helps...

Well my understanding is that typically KC is worse in one eye, I am guessing your right eye as it was with mine, seems to often link to if you are right or left handed. So is your left eye that bad? From your initial scans of both eyes over 1 year ago is the recent scans on your left showing further deterioration?

On the health insurance mess I am with Aviva who covered the CXL portion of my procedure once I had it pre-approved. I totally lucked out as I had been with VHI the year prior and had just switched when I was diagnosed. Whew!

[irishproduce]

Guys,

Reading through this, a couple of things.
I called the clinic in blackrock and my appointment next week is a consultation to have a look at the situation...no surgery yet.

I am coming off the back of a referral from Limerick (driven by me as I have been asking to halt this condition as I don't want it getting worse).

My situation is that when I sit in the chair at the hospital to have the eye test done by the nurse, with my right eye, I can barely see the first letter on the top line, although I get about 3 lines down through the pinhole. With my left eye, I can get about 4 lines down and then about 5 or 6 with a squint. I can get straight to 6 or 7 with my glasses on.

I can wear a disposable astigmatism lens in it without much problem, takes a minute to get it in but vision then is back to sharp as a tack!

I am very concerned reading your posts re cxl.
I specifically asked consultant about cxl making it worse and she said it wouldn't, worst case is that it wouldn't get any better.

I can not state how devastating it would be for me to have a story like irishdisapora's story.
The vision in my right is shot and lenses dont sit on it. She did some corrective surgery recently to try to round it a bit (a grafted cornea by the way) in the hope of getting a lens on it in the future but for now, if the vision in my left was to be made worse by this cxl treatment, I am in big trouble!

Am I going at this all wrong??
Please help with your advice, I appreciate it.
irish

[Irishdiaspora]

Originally Posted by eddiem74

Well my understanding is that typically KC is worse in one eye, I am guessing your right eye as it was with mine, seems to often link to if you are right or left handed. So is your left eye that bad? From your initial scans of both eyes over 1 year ago is the recent scans on your left showing further deterioration?

On the health insurance mess I am with Aviva who covered the CXL portion of my procedure once I had it pre-approved. I totally lucked out as I had been with VHI the year prior and had just switched when I was diagnosed. Whew!

The KC was definately worse in my right eye and my left eye has been my stronger eye for the last couple of years. Recent scans have shown an increase in the curvature in the left eye such that CXL was recommended for it too. To be honest, I've been putting it off with nerves and have the appointment twice at this stage.

Interestingly, my aunt was diagnosed with KC last week. She lives in Switzerland and I'll be in touch wiht her to hear the views of her doctor. Has anyone else come across KC running in families?

[eddiem74]

Originally Posted by irishproduce

Guys,

Reading through this, a couple of things.
I called the clinic in blackrock and my appointment next week is a consultation to have a look at the situation...no surgery yet.

I am coming off the back of a referral from Limerick (driven by me as I have been asking to halt this condition as I don't want it getting worse).

My situation is that when I sit in the chair at the hospital to have the eye test done by the nurse, with my right eye, I can barely see the first letter on the top line, although I get about 3 lines down through the pinhole. With my left eye, I can get about 4 lines down and then about 5 or 6 with a squint. I can get straight to 6 or 7 with my glasses on.

I can wear a disposable astigmatism lens in it without much problem, takes a minute to get it in but vision then is back to sharp as a tack!

I am very concerned reading your posts re cxl.
I specifically asked consultant about cxl making it worse and she said it wouldn't, worst case is that it wouldn't get any better.

I can not state how devastating it would be for me to have a story like irishdisapora's story.
The vision in my right is shot and lenses dont sit on it. She did some corrective surgery recently to try to round it a bit (a grafted cornea by the way) in the hope of getting a lens on it in the future but for now, if the vision in my left was to be made worse by this cxl treatment, I am in big trouble!

Am I going at this all wrong??
Please help with your advice, I appreciate it.
irish

It also my understanding CXL does not make anything worse. In my case I had a combination of laser and CXL in one so there is obviously risks and possible side effects until everything settles down. I cannot comment on glasses or lenses as I have luckily not had either yet. If you are concerned just talk it out with your consultant or doctor or even seek a second opinion if you feel warranted.

Originally Posted by Irishdiaspora

The KC was definately worse in my right eye and my left eye has been my stronger eye for the last couple of years. Recent scans have shown an increase in the curvature in the left eye such that CXL was recommended for it too. To be honest, I've been putting it off with nerves and have the appointment twice at this stage.

Interestingly, my aunt was diagnosed with KC last week. She lives in Switzerland and I'll be in touch wiht her to hear the views of her doctor. Has anyone else come across KC running in families?

I do not think they know what the cause of KC is, it generally is more common in late teens and progresses in 7 year cycles typically slowing/stopping in and around the 40's, although I am sure there are exceptions.

If you are concerned about the procedure I know the Wellingtion are piloting an accelerated CXL procedure which if I recall correctly only last 10mins. Again, I am not connected to the Wellingtion just passing on what I know.

Best of luck.

[S.M.B.]

I participated in a genetic study conducted by a PHD student from Belfast in London but was unable to attend a talk outlining the results of the research. I'm hoping a DVD recording of the talk will come my way in the near future as I can't find anything about the studies findings online.

[glineli]

After having kc for over ten years I have decided to go and see can I have cxl. My eyes just swell too much with rgps and its very paiful. Hopefully after cxl I might be able to get away with wearing glasses. I will keep the thread updated