Keratoconus

Shane732 · 16-07-2010 8:41am #1

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

daycent · 26-07-2010 5:59pm

Shane, there is a Dr. Condon based in Waterford who specialises in Keratoconus. I'm sure if you google him you'll find an address.

endplate · 29-07-2010 10:50pm

Donal O'Malley does a clinic in the Mater but is based in Dixon Hempenstall Opticians in Suffolk Street. He is very good

DavidKay · 29-07-2010 11:07pm

Have the same prob and been with Donal for many years and very pleased with his help, there arnt many out there who have his experience of this condition, I can write a book on the wierd places and inappropriate times I have lost lenses but glad to say that having been diagnosed at 20 and having had a graft at 40 on the left eye all has settled down now all be it at 59 thanks to Donal The most important lesson I have learnt over the years if u feel your eye drying out take out the lense and moisten it straight away, Best of luck

Daisies · 03-08-2010 11:59am

+1 on Donal O Malley, he's a gent to deal with.

RonMexico · 10-08-2010 6:42pm

I also have Keratoconus and it is severe in both eyes. The past year has been a nightmare. Last September I tore the cornea in my right eye. Went to a certain hospital which shall remain nameless and the treatment I received was shocking. Basically they hadn't a clue and wanted to perform a transplant in both my eyes. To cut a long story short I went to Dr. Condon in Waterford and he was absolutely horrified by what I told him. I'd probably be blind today if I hadn't gone to him. I was recently at the Centre for Sight clinic in London and they recommended that I receive a partial corneal graft in my left eye. My right eye has healed and I wear special lenses that I get from Egans Opticians(Peter Crisp) in Cork.

Now this is where the latest headache begins. My health insurance company doesn't want to pay out for my graft operation in London, they want me to have a full graft here, which is not recommended by Mr. Condon. I'm tearing my hair out over this. The process is so unbelievably slow.

Also I have just found out that Bausch & Lomb Daily Cleaner is no longer available for my lenses and the same with Miraflow! I don't know what to do now.

I'm in the last year of my PhD and the stress of that combined with the above is really starting to take its toll.

Any suggestions/advice would be appreciated. I have great faith in Dr. Condon I might add. Brilliant man and a gentleman too.

daycent · 10-08-2010 7:11pm

RonMexico wrote: »

I also have Keratoconus and it is severe in both eyes. The past year has been a nightmare. Last September I tore the cornea in my right eye. Went to a certain hospital which shall remain nameless and the treatment I received was shocking. Basically they hadn't a clue and wanted to perform a transplant in both my eyes. To cut a long story short I went to Dr. Condon in Waterford and he was absolutely horrified by what I told him. I'd probably be blind today if I hadn't gone to him. I was recently at the Centre for Sight clinic in London and they recommended that I receive a partial corneal graft in my left eye. My right eye has healed and I wear special lenses that I get from Egans Opticians(Peter Crisp) in Cork.

Now this is where the latest headache begins. My health insurance company doesn't want to pay out for my graft operation in London, they want me to have a full graft here, which is not recommended by Mr. Condon. I'm tearing my hair out over this. The process is so unbelievably slow.

Also I have just found out that Bausch & Lomb Daily Cleaner is no longer available for my lenses and the same with Miraflow! I don't know what to do now.

I'm in the last year of my PhD and the stress of that combined with the above is really starting to take its toll.

Any suggestions/advice would be appreciated. I have great faith in Dr. Condon I might add. Brilliant man and a gentleman too.

That's awful. All I can offer is my sympathy I'm afraid. It must be terrible with the insurance company being so slow to react, especially with a condition where time is so important.

Shane732 · 11-08-2010 7:08pm

I'm actually with Dixon Hempenstall at the moment and they've recommended that I go to a specialist.

Daisies · 11-08-2010 9:57pm

How about the Wellington? They are one of the only places in Ireland that do the Collagen Cross Linkage for keratoconus.

MDR · 21-08-2010 11:42pm

Hi Shane,

I have had Keratoconus for about 10 years now, I can't recommend Mary Eustace optician across the road from the Eye and Ear Hospital enough. I mean she is a saint, the Florence Nightingale of Keratoconus (KC).

She is very very serious about treating her KC patients well.

My only regret is that since I moved from Dublin I can no longer attend her clinic :-) . All though I have been considering starting to make the trip up again.

Let us know how you are getting on.

Thanks

Ray Kinsella

danny29 · 22-08-2010 11:23pm

Im 20 years old and i suffer from keratoconus. My eyes began to get worse when i was 16 and also my eyes tend to get very dry most of the times. Doctor told me that the reason why my eyes got worse is because i rub my eyes all the time. Now im wearing RGB contact lenses and it changes my life. I also have to pour eye drops to make sure my eyes got moist.

I am very happy to see someone open the forum about keratoconus and finally got the chance to tell my stories. I mentioned earlier i wore rgb lenses but i have some problems wearing it. Everytime when i put my right lense on my right eye it tends to fog and it didnt stick very well. On the other left lense it works perfectly fine. My right lense sometimes bothers me and i dont really want to end up having scratch on my right eye.

The most important thing is i have to make sure that the lense wouldnt slip..otherwise i have to pay 500 for those. So far i have been wearing rgb for six months..and i manage to protect it from falling down. I wish i dont have to wear rgb lenses and..i wish theres other way in improving vision. RGB lenses just feels uncomfortable most of the time

MDR · 23-08-2010 9:35am

Caveat: my opinions are my own, I am not a doctor nor am I qualified to dispense medical advice.

Danny, I am guessing you are right handed and that the KC is worse in your right eye. I am right handed too and my KC is far worse in my right eye. If you are right handed, you rub more with your right hand, therefore your KC is worse in your right eye. 99% KC'ers rub there eyes, this is all classic KC.

If the KC is worse in your right eye, chances are that your cone is more pronouced in your right eye. Think about what your are trying to do here, its the equivalent of trying to balance a saucer on top of a traffic cone. There is supposed to be a tear film between the lense and your eye, but because your prounced cone and crappy tears (dry eye) this is drying out, hence your right eye is fogging up. In your left eye, you have a smaller cone, therefore its easier to do.

Has your optician suggested or have you tried piggybacking lenses at all, that is where you wear an unpowered soft contact lense under your RPG to make it more comfortable? This works for alot of people. Who is fitting your lenses a doctor or a specialist optician? Depending on the soft lense you use, piggybacking may also stop/prevent/slow down the drying out which will stop the lense from flying out or moving (slipping around the back of your eye) every twenty minutes.

Another classic KC related problem is dry eye, there are good reasons for this but to be brief about dry eye and KC .... your tears are crap, so are mine, its a very common KC compliant. KC'ers like us go through an astonishing amount of rewetting drops in a day. Which rewetting drops are you using is very important, there are big difference between them?

danny29 · 23-08-2010 9:27pm

MDR wrote: »

Caveat: my opinions are my own, I am not a doctor nor am I qualified to dispense medical advice.

Danny, I am guessing you are right handed and that the KC is worse in your right eye. I am right handed too and my KC is far worse in my right eye. If you are right handed, you rub more with your right hand, therefore your KC is worse in your right eye. 99% KC'ers rub there eyes, this is all classic KC.

If the KC is worse in your right eye, chances are that your cone is more pronouced in your right eye. Think about what your are trying to do here, its the equivalent of trying to balance a saucer on top of a traffic cone. There is supposed to be a tear film between the lense and your eye, but because your prounced cone and crappy tears (dry eye) this is drying out, hence your right eye is fogging up. In your left eye, you have a smaller cone, therefore its easier to do.

Has your optician suggested or have you tried piggybacking lenses at all, that is where you wear an unpowered soft contact lense under your RPG to make it more comfortable? This works for alot of people. Who is fitting your lenses a doctor or a specialist optician? Depending on the soft lense you use, piggybacking may also stop/prevent/slow down the drying out which will stop the lense from flying out or moving (slipping around the back of your eye) every twenty minutes.

Another classic KC related problem is dry eye, there are good reasons for this but to be brief about dry eye and KC .... your tears are crap, so are mine, its a very common KC compliant. KC'ers like us go through an astonishing amount of rewetting drops in a day. Which rewetting drops are you using is very important, there are big difference between them?

Hey thank you so much for your reply and i really appreciate it. I got my contact lenses from Dixon hempestall down in Suffolk street and it was the optician who done the fitting for me. I never heard of piggyback lenses so i might ask them about it. The only thing that they mentioned to me was if they replace my right lense they will give me lense that hard to slip off but less vision sharpness. I have tried 2 wetters so far systane and acuvue but systane works better for me. I feel much more comfortable using systane and they gave be better lubrication.

My right eye is much worse than left eye and it gives me all sort of problems like drying...fogging..lense slipping off. If i put the solution to try remove the foggyness it keeps coming back and im really annoyed by it. I guess theres nothing i can do but try to change for different lense for the right eye.

MDR · 24-08-2010 11:03am

Caveat: my opinions are my own, I am not a doctor nor am I qualified to dispense medical advice.

danny29, its interesting that some many KC'ers end up at Dixon hempestal? How did it happen for you, who recommended them? There are rakes of different kinds of lenses to try. All have pros and cons, and sometimes its just a matter of having a willingness to try them.

The very first optician I went to gave me a pair of RPG's because thats what it said in his university textbook (no kidding). The would flyout all of the time and did little to improve my vision.

The next optician I went to, gave me a pair of Soft Perm lenses because thats what his patients found comfortable. He had been prescibing them for about 20 years at that point, and was either ignoring or was unaware of research that suggested that their long term use can cause oxygen deprivation issues later. (To be fair to him they where very comfortable)

After much research in the industry I found Mary Eustace, I recommend her earlier in the thread, so I am not going to repeat myself. What she has is a willingness to try to find what works, it ain't cheap by any means but I saved money buying replacement lenses in the long term.

I mention the soft perm's above, people use these abit, there are issues with them definitely, but they are extremely comfortable and _never_ move. There are scleral lenses that sit on the scleral of eye vaulting over the Cornea. There RPG's made out of more comfortable materals etc etc ... As I said, I am not an optician but I know there are options, push your optician or find a new one.

On the rewetting, I used Systane for a while, my Aunt who has cronic dry eye swears by it, I didn't find it as good. Myself, I am addicted to Thera Tears like it is Heroin, and its nearly as expensive as Heroin, but the dry eye hasn't bothered me in a long time. That said I still had to give up wearing lenses :mad:

garzezu · 24-08-2010 11:51am

MDR wrote: »

Hi Shane,

I have had Keratoconus for about 10 years now, I can't recommend Mary Eustace optician across the road from the Eye and Ear Hospital enough. I mean she is a saint, the Florence Nightingale of Keratoconus (KC).

She is very very serious about treating her KC patients well.

My only regret is that since I moved from Dublin I can no longer attend her clinic :-) . All though I have been considering starting to make the trip up again.

Let us know how you are getting on.

Thanks

Ray Kinsella

Hi Ray

I have hijacked this advice (I hope you don't mind) and I've made myself an appointment to see this lady. I do hope it works out for me as well as it has done for you. I've had kerataconus predominantly in my right eye for the bones of 8 years now. Initially I was told in beaumont hospital that I had a stigmatism in my eye and glasses were the way forward. This was complete rubbish and I knew this in my own heart and soul. Thats why I refused to pay Mcnally opticians on the Green €500 for a pair of glasses that they wanted to give me when it was clear that they didnt work. Fortunately for me, I work in DIT and I decided to take a free eye test in their optometry clinic. It was then that I was correctly diagnosed with KC. Thanks for nothing Beaumont and McNally!

My problems didnt end here though. Since then I've been with The Royal Victoria Eye & Ear who in turn sent me to Dixon Hempenstall for lenses. I see Dixon Hempenstall have a good reputation and most people speak highly of them but unfortunately they didnt work out for me. I went for separate fittings on 4 or 5 occassions. That was fine but when I went to pick up the lenses, they had the wrong ones on no less than 5 occassions. I had to take so much time off work as a result and in the end I just got fed up and said they can keep they're shaggin lenses! Its imperative that I get the problem sorted now though because my good eye is starting to deteriorate.

For sufferers of KC, Info on the condition and the treatments available is very hard to come by - In Ireland anyway. I've known that I have KC for a long time now but I just didnt know what to do about it. Fair play to the person who set up this thread! If my trip to Mary Eustace is a success, it will have made a difference to me at least. Fingers crossed folks!

MDR · 24-08-2010 1:52pm

Caveat: my opinions are my own, I am not a doctor nor am I qualified to dispense medical advice.

Hi garzezu,

Can you clarify this, who at the beaumount hospital told you that you had an astigmatism, a consultant or a NCHD (non-consultant hospital doctor?). I don't want anyone to name-names here, but this is pretty horrific stuff that you where misdiagnoised at a major teaching/research hospital in this country.

The problem is that the ROI doen't have an National Eye Clinic, like the Royal in Belfast or Moorefields in London where specialist opticians and consultants work in teams to provide care. This is all left to private industry to provide where the response is often disjointed, sometime inappropriate and were the primary motivation is not always to provide the best care.

I am sorry to hear that your good eye is deteriorating, that happened to me too. It happened to me in my late twenties, I had KC about 7/8 years at that point. There is research that suggests that KC can go through stable periods of about 7 years followed by periods of deterioration. The same research also suggests that it should stablise permenantly by your late 30s/early 40s.

My only piece advice is that fitting KC is non-trival you can't expect that your first fitting or first pair of lenses is going to be enough. Its a long expensive road in Ireland but a good optician will know the ropes and be able to help. A good optician will know which options are more likely to work, know what you can claim on tax and prsi, and return lenses for you that don't work, so they won't cost you.

Please stick with it, and try not to get frustrated if the first few fittings don't work out. Let us know how you get on.

Regards

Ray Kinsella

garzezu · 24-08-2010 3:40pm

I'd be happy to name names to be honest, because I think that the more people keep quiet about these things, the more its going to happen. I was referred to the Opthalmic Clinic in Beaumont by my own GP. I cant think of the consultants name at the time, but it has to be on record. She was definitely a consultant.

The KC was in its early stages at this point so I feel if it was diagnosed correctly to begin with, I had a good chance of stopping the condition deteriorating much further. The consultant barely gave me a second look to be honest. Her attitude on the day was horrendous. To begin with, she thought that I had'nt been to an optician and she seemed pretty miffed about that. Then I explained to her that I had been to one and that the glasses they were giving me did not improve my vision one IOTA. Then she told me to go back to them and ask them to provide glasses or lenses for "A mild astigmatism". What a joke!

It was at this point that I went to McNallys on the green, armed with the useless advice from Beaumont and like I said, McNally wanted €500 for a pair of specs that were of no use to me. Everything was a blur when I wore these glasses but McNally himself said my eyes just needed to adjust to them and in time, they would improve my vision. Poppycock! I knew they werent going to be any use.

It was so frustrating to know there was something really wrong and even more worrying because I didnt get any help or answers from those who were supposed to be providing it to me. It was such a relief when I went to the Optometry centre in DIT. DIT Staff get offered free eye tests every year. The only catch is the students get to poke and prod at your eyes for 2 hours. In case you don't know, it's where students go to study opthamology and earn their qualifications. And would you believe, it was a student who diagnosed me and had it verified by a senior lecturer.

It's been 5 years since I found out I had KC. It's really bad in my right eye and I've been depending on my left eye to date, but this is starting to be affected too.. I'm 30 years old now so I'm really hoping it stablises soon and it doesnt deteriorate much further.

Incidentally, I didnt mind the fitting process in Dixon Hempenstall. I was quite ok with that. I'd go to a fitting 100 times if it meant I got the correct lenses in the end. The only problem I had was that when it came to actually ordering the lenses, Dixon Hempenstall kept ordering the wrong ones. I need quite a large lense because the cone is very predominant in my right eye. The average size lense will just slip down because of this. There's no curviture there for it to stick to. But every time I went to collect the lense in Dixon Hempenstall, they had ordered the smaller one. Once or twice you can forgive! 5 times?

I'm looking forward to visiting Mary Eustace. Spoke to them on the phone today and the girl listened tentatively and took her time to get relevant details in preparation for my appointment monday week. I'm impressed already! I will definitely let you know how I get on. Thanks for the tip Ray and thanks very much for your interest!

Best wishes,

Gareth

daycent · 24-08-2010 4:21pm

This is off topic I know, but I was just hoping to ask a quick question. There seems to be a good few people with KC active here so maybe someone can answer my question.

I had a corneal cross linking procedure done on my right eye about 5 weeks ago. There is still fairly considerable blurring or 'ghosting'. It's really starting to annoy me now as the sight wasn't that bad to begin with. I'm wondering if anybody has had the procedure done and can let me know when their sight started to get back to normal. I'm getting no clear answer from looking around online.

It most noticeable when working on the computer, which I do a lot. I'm a photographer so it's pretty important to me that it starts to come around soon.

oide32 · 24-08-2010 6:20pm

I'm looking forward to visiting Mary Eustace. Spoke to them on the phone today and the girl listened tentatively and took her time to get relevant details in preparation for my appointment monday week. I'm impressed already! I will definitely let you know how I get on. Thanks for the tip Ray and thanks very much for your interest!

Best wishes,

Gareth[/QUOTE]

Hi all, really interested in this thread. Gareth - just wanted to add my recommendation for Mary. I have KC in my left eye and early signs of it in my right. I hopefully will get CXL in that eye in the Hermitage clinic soon. I won't bore you with the details but had awful trouble trying to get a lens that worked for me with a large chain of opticians. Gave up and went to another place that wouldn't touch me and instantly referred me to Mary. I haven't looked back since. It hasn't been easy and I am in the process of being fitted for a new lens with her but she is so knowledgeable and genuinely interested in the condition. Her practice was also so helpful in terms of applying to have the lens as a medical appliance and all the tax stuff.

I have chronic dry eye and with her advice I have now got my eyes in a good state. It's not easy - hot facecloths in the morning, cleaning the lids with baby shampoo, theratears (yes I also could buy shares in the stuff) flaxseed oil and systane. But it works and I have learnt that the big thing for me is cleaning my eyelids. Fortunately I have family in America so stock up when I can with theratears and systane.

Best of luck

Sinead

garzezu · 25-08-2010 12:18pm

Hi Sinead

Thanks for your recommendation. I'm really looking forward to having this problem solved once and for all and seems as though I have finally found the person to do it. I have to say in the last two days I have learned just as much about KC as I have done in the last ten years. That's just from talking to you people. While it's comforting to know that I'm not the only one, I'm both astonished and annoyed by the huge disservice from the Irish Healthcare System to KC sufferers.

It seems as though every person that has posted to this thread has their own trial and error story to tell. We have all spent a lot of time and a lot of money and this is only ENROUTE to actually finding someone who can fix the problem! It shouldn’t have to be this way. KC is a medical condition like any other. The process should be simple. GP visit, Hospital visit, Diagnosis, Treatment! Why are we all getting the run-around?

There is a serious lack of information out there for people with the condition. Other countries have websites, societies and foundations set up to meet the needs of KC sufferers. How beneficial would it have been for me and everyone else on here, if we could access a website that would answer FAQ's and list the contact details of practitioners who specialise in treating KC? It's not much to ask is it? It would save people a hell of a lot of time and a substantial amount of money.

To touch on something Ray said previously, I too find it interesting that so many people with KC are being directed to Dixon Hempenstall. I was directed to them by The Royal Victoria Hospital, but why wasn't I given an option and why wasn't I told about Mary Eustace when her practice is located virtually across the road from The RV Hospital. I literally could have walked across the road after my hospital visit and made an appointment with Mary Eustace. I think this is a farce really and I wouldn’t be surprised if the hospital was acting as a money mule for those associated with both The RV Hospital and Dixon Hempenstall. I might be way off the mark, but the way this country is run in general these days, I wouldn’t be shocked at all.

Sinead - Can I ask you a few questions about your condition?
Did you suffer from Chronic Dry Eye before you started to wear lenses?
I don't have this problem at the minute but I'm afraid that I will when I do start to wear them.
Also, can you tell me how much the CXL treatment in The Hermitage costs?
My next question applies to you and to everyone else on this thread. How long does it take to get used to wearing lenses? I have only previously tried them on and I hate them. I just want to gouge my eyes out when the lenses are in and they do be streaming. So not looking forward to wearing them but I will definitely stick it out in order to get my proper vision back!

MDR · 25-08-2010 12:59pm

daycent wrote: »

I had a corneal cross linking procedure done on my right eye about 5 weeks ago. There is still fairly considerable blurring or 'ghosting'. It's really starting to annoy me now as the sight wasn't that bad to begin with. I'm wondering if anybody has had the procedure done and can let me know when their sight started to get back to normal. I'm getting no clear answer from looking around online.

Hi daycent,

Sorry to hear about the ghosting it can be a real pain, can my you ill at times. I get it at night. seeing three moons these days at the moment

Caveat:-
1. I am not a doctor.
2. I have not had cross-linking done.

From what I have hear the ghosting should improve after a while. I think any your have done that is poking at your cornea is prolly gonna get worse before it gets better. You know you can play with the accessibility settings of your OS and applications to make things easier in the interim. Using high-contrast modes etc, I often use white text on a blue background in word to make reading easier.

Who recommended you for the cross-linking? Has it improved your vision or KC at all? Did it hurt?

Regards

Ray Kinsella

MDR · 25-08-2010 1:17pm

oide32 wrote: »

I have chronic dry eye and with her advice I have now got my eyes in a good state. It's not easy - hot facecloths in the morning, cleaning the lids with baby shampoo, theratears (yes I also could buy shares in the stuff) flaxseed oil and systane. But it works and I have learnt that the big thing for me is cleaning my eyelids. Fortunately I have family in America so stock up when I can with theratears and systane.

Sorry to hear about your dry eye Sinead. I was really miserable with it before I went to see Mary. The Theratears are a huge help but expensive here though ... what price do you pick em up for in the US? Any problems with Customs? I will be on the east coast on next week.

Have to say I smiled when I read this, this is all classic Mary Eustace. I remember the flaxseed, yuck!!! I didn't last long on that, its was the fishy tasting burps that killed it for me in the end. I had to give them up before they killed my relationship. I remember trying to hide it in my breakfast cereal. Mary is very particular, the capsules won't do, it has to be the cold pressed stuff, kept in the fridge in liquid form etc.

You have reminded me though, I have become very lax about the cleaning lately. I have to get back ontop of it, because it does make a huge difference. I can't tolerate lenses anymore either way at this stage, but the amount of cleaning does change how "happy" my eyes are.

Who recommend you for CXL? was it Mary's idea? how does she feel about it? Last time I went to see Mary, CXL was still in its infancy in Ireland.

oide32 · 25-08-2010 2:45pm

Hi all,

I'm not a doctor either! So anything I say i just based on my own experience and trial and error.

Re info: The consultant I went to recommended NKCF.org as the one place he would direct people too. I found it helpful and follow it on facebook - has some good updates. I also have looked at this website and get the newsletter from this organisation in the UK

http://www.keratoconus-group.org.uk/

Garzezu

Did you suffer from Chronic Dry Eye before you started to wear lenses?

It was something that never bothered me to a huge extent until I tried to wear a lens. When I went to other opticians it was never mentioned. My inability to tolerate a lens was put down to various reasons from - oh that's just the way it is get used to it to clean the lens properly. When I went to Mary she instantly noticed that my tear volume was poor and the consistency was like oil on top of water. So that has to be sorted before I got the lens working. Which I did and got great vision with the lens.

Also, can you tell me how much the CXL treatment in The Hermitage costs?

Apparantly it will be in the range of 1000-1200 not covered by VHI

How long does it take to get used to wearing lenses?

For me a good month and various things make me fall off the wagon and totally give up - when it gets colder and I have the heat on in the car/ working a lot at the computer. I find it easier if I have to work a lot at the computer to take the lens out and just enlarge the print to a ridiculous level!

MDR
Theratears were 10 dollars in Walmart but were available in any of the big pharmacy chains like Walgreens or CVS. No problem with Customs.

I tried the liquid but couldn't - I could taste it all day. I relented and now take capsules but try to take 3 in the morning and 3 in the evening (the FMD brand). They seem to be doing the trick

Who recommend you for CXL?
The cone on my good eye has got steeper- gradually over a year and half and then the last one had moved on a good bit so between that and the dry eye she recommended I go see the consultant. He took his measurements with a different machine and will only do the procedure with signs of the cone getting steeper at a six month interval based on his measurements. So I am going for review in one month to see about the dry eye (which has improved) and three months for the CXL. But based on how it's been going I'll probably have it.

How does she feel about it? She's had a few patients - one got a little bit worse but the others seem to have got better or stayed the same (which is the idea I suppose!).

Daycent
I'd be really interested to hear how the procedure went and how you found it. Was it painful? Did you have to take any time of work? How about driving?

It's great to know there are others out there!

Sinead

MDR · 25-08-2010 3:14pm

Garzezu,

Thanks for your recommendation. I'm really looking forward to having this problem solved once and for all and seems as though I have finally found the person to do it.

My advice, temper your expectations, there is no such thing as a miracle worker with KC. Keep expectations modest and see what happens

I'm both astonished and annoyed by the huge disservice from the Irish Healthcare System to KC sufferers.

We are very much under the radar/off the map of the health care system in general. We are an awkward and expensive to treat, and best ignored. Most importantly because we have no critical mass, despite the number of sufferers its very unlikely that they would make provision for us.

It shouldn’t have to be this way. KC is a medical condition like any other. The process should be simple. GP visit, Hospital visit, Diagnosis, Treatment! Why are we all getting the run-around?

You are entirely ignoring the structure of the Irish health system is not deliver to most effective care to you, but to protect little fiefdoms and income of a section of the primary care-givers.

There is a serious lack of information out there for people with the condition. Other countries have websites, societies and foundations set up to meet the needs of KC sufferers.

I had a blog for a while detailing much of this information, I gave it up for lack of time to maintain it.

To touch on something Ray said previously, I too find it interesting that so many people with KC are being directed to Dixon Hempenstall.

KC is lucrative to treat, we have lots and lots of repeat visits over the years. Given that I now regularly hear hospitals advertise on radio, I wouldn't be surprised in the slightest if there was a something like that involved. But temper you cynicism, not all care givers are driven by self interest.

Best regards

Ray Kinsella

My next question applies to you and to everyone else on this thread. How long does it take to get used to wearing lenses?

Depends on the lenses, sometimes 3-4 weeks, sometimes longer ....

oide32 · 25-08-2010 3:40pm

My advice, temper your expectations, there is no such thing as a miracle worker with KC. Keep expectations modest and see what happens

I agree - I think the most important thing is to have a relationship with an optician you doesn't get frustrated with you and will give you time. We are awkward to treat and time consuming. For me I just think it's important to be able to admit defeat and start to try get things working again when things change.

S

MDR · 25-08-2010 3:41pm

oide32 wrote: »

Apparantly it will be in the range of 1000-1200 not covered by VHI

Don't forget you can claim this back on your Med One though!

oide32 wrote: »

I have the heat on in the car/ working a lot at the computer

Car heaters and VDUs will be the death of me too :-) As I speak I have a half used vial of Theratears on the desk in front of me. There is one permenantly in front of me on my desk, at my bedside, my wife finds the tops of them all over the house, they drive her crazy! The trick is not to under or over lubricate, too little and you dry out, too much and the lense will slide out on all the tears..

oide32 wrote: »

Theratears were 10 dollars in Walmart but were available in any of the big pharmacy chains like Walgreens or CVS. No problem with Customs.

Worth knowing thanks, I am paying €12 a box for them here, thats a nice saving, I will bring a bigger bag so. :-) Anything else I can pick up over there worth having?

oide32 wrote: »

I tried the liquid but couldn't - I could taste it all day. I relented and now take capsules but try to take 3 in the morning and 3 in the evening (the FMD brand). They seem to be doing the trick.

But what kind of difference do you notice with the oil, does it improve the quality of your tears?

oide32 wrote: »

So I am going for review in one month to see about the dry eye (which has improved) and three months for the CXL. But based on how it's been going I'll probably have it.

Haven't been to see a consultant in more than two years, I am just too busy and disappointed to be motivated to do it. Last time I went to see one here in Limerick, who came highly recommended BTW. I got a half-assed come-back if it gets any worse advice, i.e. no on-going monitoring for deterioration ... just a "sure begorra, you can still see can't you, come back when you can't".

Again KC is awkward and time consuming, he is running a Laser Eye Treatment center ... I am bad for business, he couldn't care less. I know I am being very cynical here, I guess I am cheesed off I can't get to Mary E any more ... :-(

She's had a few patients - one got a little bit worse but the others seem to have got better or stayed the same (which is the idea I suppose!).

Interesting, thanks for the information!

Regards

Ray Kinsella

MDR · 25-08-2010 3:43pm

oide32 wrote: »

My advice, temper your expectations, there is no such thing as a miracle worker with KC. Keep expectations modest and see what happens

I agree - I think the most important thing is to have a relationship with an optician you doesn't get frustrated with you and will give you time. We are awkward to treat and time consuming. For me I just think it's important to be able to admit defeat and start to try get things working again when things change.

S

Amen to that!, this is all very very important.

Ray K

daycent · 25-08-2010 5:37pm

Just for those interested, I thought I'd give a brief explanation of my experience of the cross linking procedure.

From the beginning;

I always had perfect vision, or so I thought, until I had a routine medical for a job a couple of years ago, when I was in my mid twenties. I was told that I was weak in my right eye, which came as a bit of a surprise. I didn't think much of it at the time and just thought it was my eyes deteriorating naturally.

I became more aware of it recently, noticing a worrying difference when just using my right eye, particularly when looking at text on TV or a computer screen. About 4 months ago, my girlfriend was going for a routine eye check up so I decided to get checked out also. I am working as a photographer now so I suppose I was more aware of it than most people.

The optician in Specsavers suspected it, and she referred me to an eye specialist in Waterford, a Dr. Condon. She had been at a conference about KC recently and I suppose it was fresh in her mind. My KC is in the early stages as well, so not easy to diagnose. I consider myself lucky anyway, especially after reading this thread!

Dr. Condon confirmed it, and referred me to the Wellington Eye Clinic in Sandyford. I met with Dr. Cummings, and got a very good prognosis, the best I could have hoped for really. Turns out I only have KC in one eye (so far). Once I have recovered fully I should not need glasses or contacts, which is a big relief.

The Wellington clinic do two types of crosslinking; crosslinking on it's own, or crosslinking combined with laser surgery. Dr. Condon didn't want me to get the laser surgery as he doesn't agree with it being used in conjunction with crosslinking. I wasn't put under any pressure to get it anyway which was a relief. The cost was a big factor for me as the procedure isn't covered under insurance.

The procedure itself is quite straightforward and quick. I was given some anesthetic eye drops first. Then there was the application of vitamin B2 drops for about 15 minutes or so. After that, Dr. Cummings removed the outer covering from the cornea, which didn't hurt at the time, but is what causes the pain afterwards (more about that later!). Then, you just have to stare into a UV light for 30 minutes, and drops are also applied. The 30 minutes is fine but if it was any longer it would start to get uncomfortable. You are lying down so it's not hard to keep still.

A soft contact that acts as a bandage is applied after. You are given plenty of eye drops of various types to take home. Only a small amount of anesthetic drops though which is a shame. I would definitely recommend rationing them out!

The recovery isn't that bad overall. I would recommend getting to bed as soon as possible after the procedure. You are given some sleeping pills to help. I had a two and a half hour car journey afterwards which I would like to have avoided. There are a lot of drops to be applied for a few days. I was very sensitive to light also so it helps to wear sunglasses and keep the curtains closed. After about three days most of the discomfort was gone, I can't say I felt much pain at any point. The first 24 hours are the worst.

I had to go back after 5 days to get the contact removed. I was told it was healing well. There are optional check ups after a few months, which I may or may not use. This procedure should stop KC in it's tracks, and 70% of people see an improvement, it is not a cure though. I should not have to get the procedure re-done, but it's still a pretty new procedure relatively speaking, so no one is certain.

It's been about 5 weeks since I had it done. There is still considerable blurring, it seems to vary though, or maybe I just don't notice it as much at certain times. It's most noticeable when on the computer I find. I am starting to worry slightly, I had hoped it would have started to normalise by now. The vision at the moment is far worse than it was before the procedure. I can't read this text from more than a foot away, just using my right eye. My left eye is perfect, so it's manageable.

You would have to take into account the recovery period if you're getting the procedure done. It helps to be able to take a few weeks off. You need to avoid driving for a few weeks perhaps, depending on your own experience. I would definitely recommend the Wellington eye clinic. Dr Cummings has performed the procedure many times, and I had a lot of confidence in him.

oide32 · 25-08-2010 6:52pm

MDR wrote: »

As I speak I have a half used vial of Theratears on the desk in front of me. There is one permenantly in front of me on my desk, at my bedside, my wife finds the tops of them all over the house, they drive her crazy!

Ah a fellow theratears junkie! I find those tops all over the place!

Worth knowing thanks, I am paying €12 a box for them here, thats a nice saving, I will bring a bigger bag so. :-) Anything else I can pick up over there worth having?

Where do you get the Theratears for 12? My pharmacy charges 14.50. I also got systane and systane ultra- same savings really.

But what kind of difference do you notice with the oil, does it improve the quality of your tears?

Definitely less gritty. I guess all the evidence points to benefits of omega 3 oils now so they can't do any harm either!

Again KC is awkward and time consuming, he is running a Laser Eye Treatment center ... I am bad for business, he couldn't care less. I know I am being very cynical here, I guess I am cheesed off I can't get to Mary E any more ... :-(

I can empathise. It is a huge amount of effort to keep eyes comfortable. It's hard to explain to people as well as they usually think "but why can't you wear glasses?"

daycent wrote: »

Just for those interested, I thought I'd give a brief explanation of my experience of the cross linking procedure.

Thanks for all the info, Daycent. I hope it settles down for you soon.

MDR · 31-08-2010 4:50pm

Hi Bryan,

Thanks for the overview its was very comprehensive. I hope your vision settles down soon!

You know you can claim tax back on the cost of the procedure via your Med one form?

Regards

Ray Kinsella

MDR · 31-08-2010 4:53pm

oide32 wrote: »

Where do you get the Theratears for 12? My pharmacy charges 14.50. I also got systane and systane ultra- same savings really.

Ended up cancelling the trip at the last minute, but am rescheduling in a few week. I get them for €12 in my local pharmacy, their called Medicare ... I guess they must just have an less outrageous markup ...

oide32 wrote: »

Definitely less gritty. I guess all the evidence points to benefits of omega 3 oils now so they can't do any harm either!

I might give them another go, Thanks !

Keratoconus

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