Keratoconus

eddiem74 · 04-05-2012 8:25am

irishproduce wrote: »

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 · 29-05-2012 9:59pm

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 · 29-05-2012 10:49pm

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 · 30-05-2012 10:12am

Irishdiaspora wrote: »

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 · 30-05-2012 10:15am

Shane732 wrote: »

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 · 30-05-2012 10:58am

eddiem74 wrote: »

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 · 30-05-2012 3:45pm

Shane732 wrote: »

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 · 30-05-2012 9:59pm

eddiem74 wrote: »

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 · 31-05-2012 8:21am

Irishdiaspora wrote: »

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 · 04-06-2012 12:35am

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 · 04-06-2012 10:33pm

eddiem74 wrote: »

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 · 05-06-2012 9:22am

irishproduce wrote: »

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.

Irishdiaspora wrote: »

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. · 05-06-2012 12:40pm

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 · 09-07-2012 8:47pm

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

glineli · 18-07-2012 10:02am

I went to the wellington yesterday and saw Dr Cummings. They did a very thorough examination which was great. After all of that Dr Cummings saw me. So his recommendation was for CXL and no lasek. My corneas are too thin for laser. Also he would like to do some heat treatment to get a better shape to the eye and this would be done a few days before the CXL. I think he called it CK.

My right eye is stage 2 and my left eye is stage 3, bordering on stage 4. So i need to get something done asap.

So the next step is to see will Aviva cover the CXL. I have moved to them this year so i am hoping they will. He is confident that i will actually get an improvement in my vision, but obviously that cant be guaranteed.

Has anyone had any problems getting CXL covered by aviva?

Shane732 · 18-07-2012 10:13am

glineli wrote: »

I went to the wellington yesterday and saw Dr Cummings. They did a very thorough examination which was great. After all of that Dr Cummings saw me. So his recommendation was for CXL and no lasek. My corneas are too thin for laser. Also he would like to do some heat treatment to get a better shape to the eye and this would be done a few days before the CXL. I think he called it CK.

My right eye is stage 2 and my left eye is stage 3, bordering on stage 4. So i need to get something done asap.

So the next step is to see will Aviva cover the CXL. I have moved to them this year so i am hoping they will. He is confident that i will actually get an improvement in my vision, but obviously that cant be guaranteed.

Has anyone had any problems getting CXL covered by aviva?

I'd seriously recommend you do your research and even get a second opinion before having Keraflex (heat treatment) on your eye. I had Keraflex done in January 2012 and at this stage my eye is nearly back to where is started before the Keraflex.

I haven't been able to get a lens to fit my eye properly at all since having the Keraflex done and my vision is actually worse now.

Your vision will be worse post Keraflex and Crosslinking - however the hope is that it will correct better with a lens due to an improved shape.

My understanding from discussion with Dr. Cummings etc... is that a lot of the patients he's done Keraflex on to date are regressing at various levels.

My advice to you would be to go to Dixon Hempenstall and talk to Nina/Donal in there before having the treatment done. If you can get a lens on the eye and it's comfortable then I certainly wouldn't go for Keraflex, Crosslinking might be worthwhile though. Nina is gifted when it comes to fitting lens - I'd go to see her and see if she can get a lens to fit you comfortably.

In relation to medical insurance cover - I think Aviva are covering CXL however I don't think they cover Keraflex. I managed to get VHI to cover Keraflex but not CXL.

I seriously regret having Keraflex done. I'm looking at having a transplant in the coming months.

glineli · 18-07-2012 10:38am

Thanks for the response and sorry to hear about your experience. Were your eyes in a bad condition before keraflex?

Did you have cxl long after the keraflex?

Dr Cummings mentioned yesterday that CXL needs to be done 3 - 4 days after keraflex. If it is left for weeks or months it will just go back to its condition per-keraflex.

I used see Donal at Dixon Hempenstall but my lens never felt comfortable. Thats why i have changed.

eddiem74 · 18-07-2012 4:38pm

glineli wrote: »

Has anyone had any problems getting CXL covered by aviva?

No issues for me with Aviva covering CXL but it was a procedure that required pre-approval by them. Dr. Cummings had to write to them to justify it, then it was approved and procedure could be scheduled. Just give Aviva a ring with the procedure code and ask them to confirm its covered under your policy and if pre-approval is still required.

glineli · 18-07-2012 5:44pm

eddiem74 wrote: »

No issues for me with Aviva covering CXL but it was a procedure that required pre-approval by them. Dr. Cummings had to write to them to justify it, then it was approved and procedure could be scheduled. Just give Aviva a ring with the procedure code and ask them to confirm its covered under your policy and if pre-approval is still required.

Thanks. I rang Aviva there and they said it still requires pre approval. I am hopeful that Dr Cummings knows what is required to get it approved.

How did you find CXL, has it improved things for you? Did you get keraflex and then CXL or just CXL on its own?

Shane732 · 18-07-2012 10:16pm

glineli wrote: »

Thanks for the response and sorry to hear about your experience. Were your eyes in a bad condition before keraflex?

Did you have cxl long after the keraflex?

Dr Cummings mentioned yesterday that CXL needs to be done 3 - 4 days after keraflex. If it is left for weeks or months it will just go back to its condition per-keraflex.

I used see Donal at Dixon Hempenstall but my lens never felt comfortable. Thats why i have changed.

I only had Keraflex on my left eye. I have the condition in both eyes but it's far worse in the left eye.

Yes the condition was bad in my left eye. If you're almost at stage 4 then I assume you're in a similar position to me. My understanding of the condition is that it really depends on here the bumps (for want of a better word) are on your cornea. it really is a case by case thing.

I had the Keraflex done on the same day. My eye was monitored during the day and Crosslinking done that evening.

Get a second opinion.

Dero · 19-07-2012 12:02am

Apropos of nothing really, but Keratoconus related and following on from previous posts re my cornea transplant, here it is now in all its glory...

Quite a few of the stitches have been removed to tweak the shape. It's only now (almost two years post graft) that it is ready for a lens. The lens is ordered, so hopefully I'll be back to using two eyes in a few weeks.

eddiem74 · 19-07-2012 7:57am

glineli wrote: »

Thanks. I rang Aviva there and they said it still requires pre approval. I am hopeful that Dr Cummings knows what is required to get it approved.

How did you find CXL, has it improved things for you? Did you get keraflex and then CXL or just CXL on its own?

Yes they should know what to do, I believe they faxed in my request and had it approved same day, the procedure was then scheduled

I had SimLC (http://wellingtoneyeclinic.com/treatments/cxl.asp) last September and per my follow-up visits shape, condition are improving, my vision has also improved somewhat. My first priority was to stop KC, and anything after that vision wise was a bonus. I do not wear lenses or glasses once everything settles down and stabilizes 100% I will then see if glasses or futher laser would benefit me.

Shane732 · 19-07-2012 8:58am

Dero wrote: »

Apropos of nothing really, but Keratoconus related and following on from previous posts re my cornea transplant, here it is now in all its glory...

Quite a few of the stitches have been removed to tweak the shape. It's only now (almost two years post graft) that it is ready for a lens. The lens is ordered, so hopefully I'll be back to using two eyes in a few weeks.

Very interested in this as I'm going down the same route myself.

How was the sight after the operation? Did you get an improve in vision without having a lens on the eye?

glineli · 19-07-2012 9:11am

Thanks lads for the updates. I am not sure what to do now!! Dr Cummings was my second opinion, Donal had said to keep wearing contacts (RGPs) but at this stage i just cant, the fitting is just not right. I will have to have another chat with Dr Cummings.

I am surprised Shane at your result after what he said the other day. I had thought it just couldnt get any worse, once you had the cxl, obviously i was wrong!

Shane732 · 19-07-2012 11:46am

glineli wrote: »

Thanks lads for the updates. I am not sure what to do now!! Dr Cummings was my second opinion, Donal had said to keep wearing contacts (RGPs) but at this stage i just cant, the fitting is just not right. I will have to have another chat with Dr Cummings.

I am surprised Shane at your result after what he said the other day. I had thought it just couldnt get any worse, once you had the cxl, obviously i was wrong!

If I was you I'd go and see another consultant in, say, the Eye & Hear or Blackrock.

What's your vision like?

Be wary of the Wellington and their approach to Keratoconus - I think they would be very slow to tell someone not to have a treatment done. Having said that, Dr. Cummings reputation speaks for itself and there is no question that he is excellent at what he does.

My understanding of the issue is that the Keraflex (heat treatment) is quite straightforward and does work. The intention of CXL after Keraflex is to lock the shape in. However the success of CXL depends on the quality of the fibres in your eye at the time of CXL and how well they can be bonded together. If you're well along the scale of Keratoconus then the likelihood is that there isn't a whole lot left in your eye to bond together. If the CXL has nothing to work with then it's pointless and the Keraflex treatment will regress over time.

I'm not saying don't have the treatment, far from it. I'm just saying make sure you are well informed and don't necessarily believe what one person tells you. For the sake of a couple of further appointments it is well worth the couple of hundred euro to get comfort in the procedure you're about to have.

I really would advise you to make an appointment with Nina and see if she can get a lens to fit you comfortably.

If I could turn back time I would not be having Keraflex.

glineli · 19-07-2012 6:34pm

Shane732 wrote: »

If I was you I'd go and see another consultant in, say, the Eye & Hear or Blackrock.

What's your vision like?

Be wary of the Wellington and their approach to Keratoconus - I think they would be very slow to tell someone not to have a treatment done. Having said that, Dr. Cummings reputation speaks for itself and there is no question that he is excellent at what he does.

My understanding of the issue is that the Keraflex (heat treatment) is quite straightforward and does work. The intention of CXL after Keraflex is to lock the shape in. However the success of CXL depends on the quality of the fibres in your eye at the time of CXL and how well they can be bonded together. If you're well along the scale of Keratoconus then the likelihood is that there isn't a whole lot left in your eye to bond together. If the CXL has nothing to work with then it's pointless and the Keraflex treatment will regress over time.

I'm not saying don't have the treatment, far from it. I'm just saying make sure you are well informed and don't necessarily believe what one person tells you. For the sake of a couple of further appointments it is well worth the couple of hundred euro to get comfort in the procedure you're about to have.

I really would advise you to make an appointment with Nina and see if she can get a lens to fit you comfortably.

If I could turn back time I would not be having Keraflex.

Thanks Shane, talk about confused now

I will think about it over the weekend, i dont have anything scheduled with Dr Cummings yet so plenty of time.

My eyesight is poor. While i was there AnnMarie did some tests and got me to a very good level, enough for a pilots license so that gave me confidence. I never get on that well with Donal.

Dr Cummings said my eyes looked in good condition but were too thin for any laser. So i am not sure if thats related to CXL and the required fibers.

thanks again for the advice

Shane732 · 19-07-2012 7:35pm

glineli wrote: »

Thanks Shane, talk about confused now

I will think about it over the weekend, i dont have anything scheduled with Dr Cummings yet so plenty of time.

My eyesight is poor. While i was there AnnMarie did some tests and got me to a very good level, enough for a pilots license so that gave me confidence. I never get on that well with Donal.

Dr Cummings said my eyes looked in good condition but were too thin for any laser. So i am not sure if thats related to CXL and the required fibers.

thanks again for the advice

When you say she got your vision up to a very good level I assume that was using the electronic thing they put in front of your eyes? If you correct that well now I'd wonder if there is any need for Keraflex.

Post Keraflex I can't even get one letter using the electronic thing! Nina can get me to the third/fourth line but when I put a lens on now the eye compresses and becomes useless.

Have you tried piggybacking the RGP with a soft lens? What lens sizes have you tried?

Having Keraflex done is a big step and something you can't come back from if it doesn't work.

Dero · 20-07-2012 10:40am

Shane732 wrote: »

Very interested in this as I'm going down the same route myself.

How was the sight after the operation? Did you get an improve in vision without having a lens on the eye?

Hi Shane.
The sight in the eye after the operation is a lot better than it was previously, but that's not saying a lot to be honest. However, the aim of a corneal graft is not necessarily to provide vision directly, rather to allow for a better lens fit.

Previously, I had two issues with that eye. Firstly, it was very, very difficult to fit a lens to it. I had been wearing an RGP for about twenty years on it, but it was becoming unstable to the point of being unmanageable. The lens would spontaneously pop out several times a day, which was a right pain; especially on dry dusty days (remember them?). The other issue was that even with the lens in, I had very poor vision from it. Barely two lines.

After the operation, it took almost two years of settling and tweaking for the shape to get to the point where I can get a good lens fit. Not perfect, but a good compromise. Vision is quite good from it; not quite 20/20, but almost. That though is more to do with the underlying vision not being there in the first place. My optician was quite surprised because she said that once a lens is fitted post-graft, most people get 20/20 (it's fitting the lens that's the trick part though...).

Having said all that, I have only had the vision tested with a test lens and won't get to try the proper lens until next month. Once I have it, I'll report back with a real-world update on the vision.

Shane732 · 20-07-2012 3:01pm

Dero wrote: »

Hi Shane.
The sight in the eye after the operation is a lot better than it was previously, but that's not saying a lot to be honest. However, the aim of a corneal graft is not necessarily to provide vision directly, rather to allow for a better lens fit.

Previously, I had two issues with that eye. Firstly, it was very, very difficult to fit a lens to it. I had been wearing an RGP for about twenty years on it, but it was becoming unstable to the point of being unmanageable. The lens would spontaneously pop out several times a day, which was a right pain; especially on dry dusty days (remember them?). The other issue was that even with the lens in, I had very poor vision from it. Barely two lines.

After the operation, it took almost two years of settling and tweaking for the shape to get to the point where I can get a good lens fit. Not perfect, but a good compromise. Vision is quite good from it; not quite 20/20, but almost. That though is more to do with the underlying vision not being there in the first place. My optician was quite surprised because she said that once a lens is fitted post-graft, most people get 20/20 (it's fitting the lens that's the trick part though...).

Having said all that, I have only had the vision tested with a test lens and won't get to try the proper lens until next month. Once I have it, I'll report back with a real-world update on the vision.

Well Dr. Cummings would probably want to laser your eye post graft to get you away from lens altogether.

Dero · 20-07-2012 3:37pm

Shane732 wrote: »

Well Dr. Cummings would probably want to laser your eye post graft to get you away from lens altogether.

Possibly. I don't go to Dr. Cummings so I have never met him, but my own surgeon did mention that they occasionally use the laser post-graft, but he's primarily focused on getting a lens on there. I'm fairly lucky though in that I've never had any issue with RGPs (and I've had them quite a while...)

I'm due to see him again in August so maybe I'll broach it and see what he thinks.

Shane732 · 20-07-2012 7:10pm

Dero wrote: »

Possibly. I don't go to Dr. Cummings so I have never met him, but my own surgeon did mention that they occasionally use the laser post-graft, but he's primarily focused on getting a lens on there. I'm fairly lucky though in that I've never had any issue with RGPs (and I've had them quite a while...)

I'm due to see him again in August so maybe I'll broach it and see what he thinks.

I assume the hope is that you'll get into soft lens post graft at some point?

I wouldn't be overly keen to go and get laser done on a eye after a transplant.

Dero · 23-07-2012 9:54am

Shane732 wrote: »

I assume the hope is that you'll get into soft lens post graft at some point?

I wouldn't be overly keen to go and get laser done on a eye after a transplant.

I think if I can get good vision from an RGP then I'd be happy to stay with that. I'm one of the lucky ones that has good tolerance for rigid lenses and while I dream of a silver bullet that would give me 20/20 without correction, I know full well that with Keratoconus, laser surgery is not it. :-/

super106 · 16-08-2012 11:10am

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,

great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

glineli · 23-08-2012 3:08pm

super106 wrote: »

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,

great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

Hi

When you going for the fitting? i have serious trouble with the rgps so would these be easier to wear?

super106 · 24-08-2012 11:13am

yes they are soft lenses

glineli · 27-08-2012 12:39pm

super106 wrote: »

yes they are soft lenses

Thanks i just got approved for CXL with aviva so hopefully between that and these new soft contacts life will be a lot easier

Shane732 · 27-08-2012 1:51pm

super106 wrote: »

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,

great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

I'd imagine you're not a serve case if you are wearing soft lens at night.

MarcusFenix · 07-09-2012 8:11pm

Hey guys, after my cxl in the ear and eye back in jan I decided to go see dr corkin in the Wellington. I must say for 200 euro I would have liked to have got more FaceTime instead of 5 min chat ending with "go see Clare ....for lens fitting"!

Anyway...I'd like to see who is the BEST person for lenses in Dublin area, I've seen a guy in waterford mentioned here before but I want someone close.

I'm hoping to move away from glasses completely as my job makes wearing them a hassle so I want the very best treatment I can get. After all how much is sight worth?

Thanks in advance for the recommendations!

M

super106 · 17-09-2012 11:30am

Shane732 wrote: »

I'd imagine you're not a serve case if you are wearing soft lens at night.

dunno but they work about 50% of the vision from rgp's

also just got Kerasoft 3 lenses which are same vision as rgp's and are soft !

super106 · 17-09-2012 11:31am

MarcusFenix wrote: »

Hey guys, after my cxl in the ear and eye back in jan I decided to go see dr corkin in the Wellington. I must say for 200 euro I would have liked to have got more FaceTime instead of 5 min chat ending with "go see Clare ....for lens fitting"!

Anyway...I'd like to see who is the BEST person for lenses in Dublin area, I've seen a guy in waterford mentioned here before but I want someone close.

I'm hoping to move away from glasses completely as my job makes wearing them a hassle so I want the very best treatment I can get. After all how much is sight worth?

Thanks in advance for the recommendations!

M

Donal omalley - dixon hempenstall suffolk st dublin only man for keratoconos, hes away until nov 12th though....

shelleymc · 30-09-2012 10:55pm

hi, I was wondering if anyone knows of a good opthamologist in the midlands? I was with Donal OMalley for years and found him excellent but I have now moved to Mullingar and need to find someone close by. any recommendations please?

Corvo · 01-10-2012 11:03am

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

S.M.B. · 06-10-2012 8:24pm

If your KC is that advanced I would have thought CXL is no longer an option. I've gone beyond the stage where CXL is a possibility but have been happily wearing a (scleral) lens for the past 5 years.

Just reminded me that I am waiting for an appointment for a fitting of a new bespoke scleral lens for my right eye. I may follow that up.

This will definitely be the last lens for me.

Corvo · 09-10-2012 2:12pm

S.M.B. wrote: »

If your KC is that advanced I would have thought CXL is no longer an option. I've gone beyond the stage where CXL is a possibility but have been happily wearing a (scleral) lens for the past 5 years.

Just reminded me that I am waiting for an appointment for a fitting of a new bespoke scleral lens for my right eye. I may follow that up.

This will definitely be the last lens for me.

What are they like?

glineli · 09-10-2012 4:24pm

Griffin1988 wrote: »

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

Hope the op went well. I might be getting this done next month as Dr Cummings has recommended it and well thankfully Aviva cover it.

When you are up and about let us know how it went

Corvo · 10-10-2012 9:01am

glineli wrote: »

Griffin1988 wrote: »

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

Hope the op went well. I might be getting this done next month as Dr Cummings has recommended it and well thankfully Aviva cover it.

When you are up and about let us know how it went

Hi. Just woke up now.

So where do I begin. First I was talked through the medication I would have to take afterwards (anti biotics, drops, painkillers, sleeping pills, a pirate like eye patch and I would also be given a small amount of the anaesthetic to bring home) They described how the eye would react that night also.

I was also offered Valium which I declined (regretfully!)

I was then brought in and made lie down. Anaesthetic was applied and a instrument was used to hold my eyeball in place. It was like a cooking thongs. (ie couldn't blink) While I couldn't exactly tell, the girlfriend was present and she told me it looked was slightly removed! Eeek!

Now, the weird part. He then uses something like a scraping device or scalpel and takes away a layer from the front of your eye. You can see your eyeball being scraped and the layer being removed! All very weird at this stage I must say. After this they keep applying a Riboflavin liquid to the eyeball for up to 25mins.

The cornea is then measured and viewed again.

You are then put back on the bed and the laser treatment begins (staring at a range of LED's).This lasts for about 10mins. He also places a contact lens in at time which I will have removed on Monday.

And that's it. You get 20mins to recover and off you go.

Funniest thing is, none of the above hurt or caused discomfort except for later on in the LED treatment and this was very slight. The whole staff were excellent and will chat to you throughout the procedure and even blare music in the room! I also received a text later on to check up on me and wish me luck.

He did advise that there would be pain that evening and truth be told it was extremely sore both and the way home and that night. Just bring an ice pack (which will stop your tear ducts streaming) and apply the anaesthetic and take both the painkillers and sleeping pills. Get a good nights rest and stay in a dark room.

Now this morning the pain has most definitely dropped by 80% and I just have a gritty feeling but I will continue to use drops to lubricate it. I'm hoping by tomorrow to operate somewhere close to normal.

Will keep ye updated on how it goes. Many thanks for your questions. I was very nervous (take the bloody Valium) but they made it a very easy procedure. I just hope that it will work for me as the odds of success have dropped due to the far along stage I am at.

glineli · 10-10-2012 9:19am

Thanks for the update, its great to hear how someone else got on and also what to expect.

Corvo · 10-10-2012 9:39am

glineli wrote: »

Thanks for the update, its great to hear how someone else got on and also what to expect.

No problem. I know it sounds a bit sick at times but the whole thing is really easy.

Plus, the nurses are gorgeous!

S.M.B. · 10-10-2012 1:22pm

Griffin1988 wrote: »

What are they like?

Big!

They do take quite a bit of getting used to and they may not be able to reproduce the same level of vision that you'd get from RGPs as there is no direct contact between the lens and the cornea.

The plus sides:

They've kept me away from the operating table for the past 6/7 years.
I could wear the lens for a full 24 hours and have no adverse reaction unlike previous lens I've had.
There is zero chance of the lens flying out of my eye/slipping around my eye/getting stuff caught underneath it.

I'd find it really hard to go back to corneal lens ever again.

Good to hear that the Op went well. I hope it has the desired positive effect.

I don't fully understand CXL. I'm going to a presentation about Advanced Surgical Procedures for handling KC in London on Saturday so I hope to be a lot more informed then.

I still think that I'm beyond the point where any of these procedures are viable options though.

S.M.B. · 10-10-2012 2:00pm

Coincidently, this article was published in the Eye & Contact Lens journal today.

Scleral lenses benefit patients with corneal irregularities

Keratoconus

Comments