Keratoconus

reverenddave · 15-09-2010 5:18pm

daycent wrote: »

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.

as far as i know he's retired now and maybe only available one morning a month
he treated everyone in my family for years
then my wife went to see him2-3 years ago relating to keratoconus which she suffered for 25 years
and he has turned into a very bitter, brutal man he was very unsympathetic to her and just wanted to collect his cash (€175) and fúck us out the door i would never dream of sending anyone to him

but if you can get to cork
Dr John Trayner in egan's opticians
he was really nice and he accepts medical cards too

EDIT:

Oh and the opthalmologist Dr Peter Crisp is great too

Dero · 20-09-2010 11:22am

Wow, I knew this forum was here, but I never expected to find a thread about Keratoconus on it... I just checked it today on the off-chance.

I've had Keratoconus for over 20 years now and have been wearing RGP lenses since I was around 16 (late eighties). I never had a problem with the lenses - I seem to be blessed with very lens tolerant eyes - but in the last five years or so I have had a lot of trouble with the right eye. The lens keeps popping out all the time, obviously due to the cone steepening. I was referred to Mary Eustace several years ago and I just want to echo the sentiments here regarding her service. She has gone to enormous lengths to get me fitted with appropriate lenses. The left eye is perfect, a comfortable, stable lens with gets me close to 20/20 vision on a good day. The right eye though is really problematic. After many, many fittings, we arrived at a lens which has reasonable stability, and provides some degree of vision improvement, but both of those are relative terms. Usually, the right eye (with lens) struggles to read even the first line of the chart, and is very prone to popping out, which is not a good thing with custom lenses the price of these.

Although Mary has spent a lot of time and effort fitting me with lenses, I have reached the end of the line with my right eye, and tomorrow (21/09/10) am going to have a corneal graft on my right eye. Mary referred me to a cornea specialist in the Hermitage Clinic in order to have some additional topography scans (Pentacam in particular) of my right eye done. That specialist concluded that if the right eye deteriorated further, he would do a corneal transplant. Yikes, says I. I always knew that was a possibility, but never considered it seriously. However, eventually, after a couple of years, he decided that it is now inevitable, which brings me to now...

Obviously I'm somewhat nervous about it. Given the current state of my right eye, then barring surgical complications, I'm hoping for some improvement in the eye. The plan is to get the eye to driving standard eventually (corrected, obviously), but to get there will take a lot of time and patience. It will be up to a year before I can be prescribed with a new lens for the eye, as it takes that long for the shape to stabilise enough. I'm looking forward to it in some ways, but it's the first (and hopefully only) time I've had an operation so I've never had a general anaesthetic before, nor even an overnight hospital stay so that side of it is more nerve-wracking than the fact that I'm going to have a a piece of someone else's eye sewn into mine.

Ah well. Fingers crossed.

daycent · 20-09-2010 7:51pm

Best of luck Dero. I'm sure everything will go well. I know it must be daunting but these procedures have been done so many times now that there is very little that can go wrong.

I'm struck by reading this thread how lucky I was to have been diagnosed so early with KC. And also, to have been able to take advantage of the corneal crosslinking procedure. The right place at the right time I suppose.

*Update on my corneal crosslinking experience*

Just for anyone interested;

I went for my first checkup after the procedure last week (about 6 weeks after) and was told the results are excellent, even better than expected. I was told the blurring I'm experiencing is down to the brain trying to adjust to the changing topography of the cornea. It's already started to "flatten" apparently. I have noticed an improvement in the blurring over the last few weeks I think, albeit slight. Any annoyance I have experienced is definitely worth it I think, when I think of the alternative. I've been told to expect a gradual improvement over the coming months. I'll report back over time on my experiences.

07-10-2010 8:43am

Hi daycent,

Your recent postings on your procedure have been very helpful and interesting to read, as I have been advised to take on this procedure (CXL) also.

I was a bit taken aback (I wasn't really expecting any problems, other than I may need glasses) but it seems, after reading up on it, that it's a worthwhile and safe procedure.

Please do update with the progress of your vision, I'm hoping to get it done over the next two weeks.

All the best.

Shane732 · 08-10-2010 1:48pm

Wow I haven't checked this thread in a while - it looks like it's really taken off!

As I've already stated I think Dixon Hempenstall are excellent and are second to none. I wouldn't be overly keen on Donal O' Malley upstairs but one of the opticians downstairs is excellent.

Thankfully my eyes have settled down a good bit recently and I haven't been forced to purchase any new lenses for the last few months.

In relation to cross-linking and other similar treatments -

For me personally cross-linking wouldn't have much of an effect as the condition is so severe, especially in my left eye. I'm told that cross linking would help my right eye, to a certain extent, but that I would still be forced to wear a lenses after the procedure - I not really see the point (excuse the pun!) of getting cross-linking done if I still need lenses.

daycent · 20-10-2010 5:49pm

Deleted User wrote: »

Hi daycent,

Your recent postings on your procedure have been very helpful and interesting to read, as I have been advised to take on this procedure (CXL) also.

I was a bit taken aback (I wasn't really expecting any problems, other than I may need glasses) but it seems, after reading up on it, that it's a worthwhile and safe procedure.

Please do update with the progress of your vision, I'm hoping to get it done over the next two weeks.

All the best.

Hope everything is going well for you. My vision is pretty much back to "normal" at this stage. Hoping for some gradual improvement form here on.

Shane732 wrote: »

Wow I haven't checked this thread in a while - it looks like it's really taken off!

As I've already stated I think Dixon Hempenstall are excellent and are second to none. I wouldn't be overly keen on Donal O' Malley upstairs but one of the opticians downstairs is excellent.

Thankfully my eyes have settled down a good bit recently and I haven't been forced to purchase any new lenses for the last few months.

In relation to cross-linking and other similar treatments -

For me personally cross-linking wouldn't have much of an effect as the condition is so severe, especially in my left eye. I'm told that cross linking would help my right eye, to a certain extent, but that I would still be forced to wear a lenses after the procedure - I not really see the point (excuse the pun!) of getting cross-linking done if I still need lenses.

Shane,

I wouldn't rule out crosslinking if I was you. The purpose of it is to stop KC from progressing. Without it, theres a good chance you'll need a corneal transplant down the road. You'll definitely spend a fortune on changing lenses over the years as your eyes change (much more than what you would spend on crosslinking).

70% of people experience an improvement in their vision after crosslinking. The Wellington clinic have another procedure that combines crosslinking with laser eye surgery which produces very significant improvements.

It's worth doing some research on IMO.

rocally · 21-10-2010 12:22pm

Hi all,

has anyone had DALK surgery - I have been told that I need it after having keratoconus for the last 13 years - Just wondering if anyone has had it and can tell me how they got on.

Cheers

21-10-2010 12:42pm

daycent wrote: »

Hope everything is going well for you. My vision is pretty much back to "normal" at this stage. Hoping for some gradual improvement form here on.

Cheers for that, I feel better about the procedure the more I read, hopefully all will go well

Glad to hear your vision has improved after the procedure!

Dero · 21-10-2010 1:23pm

rocally wrote: »

Hi all,

has anyone had DALK surgery - I have been told that I need it after having keratoconus for the last 13 years - Just wondering if anyone has had it and can tell me how they got on.

Cheers

Hi rocally.
I had DALK in my right eye last month. As it was only a month ago (exactly to the day actually), it's very early days. However, so far so good. The procedure itself went very well. I had a general anaesthetic and a one night stay in hospital. After the operation, as well as the eye being very red and sore (as expected), I was very tired for about a week. After a week or so though I was pretty much back to normal. There are a few different drops and night-time ointment. I was on Pred Forte drops hourly for the first week, but that's down to four times daily now.

In terms of vision, it's far too early to tell where I'll end up. I had a one-month check-up yesterday though, and my surgeon is very happy with how it is healing. I have a lot of astigmatism (-11), but again, that's par for this particular course. The shape of the cornea will be adjusted by selectively removing stitches over time to correct as much of the astigmatism as possible. This won't start until December when the wound has healed fully. The eye probably won't be fully stable for about a year. After that, it'll be back to get a contact fitted again.

It was made clear to me (and I understood anyway) that although the vision would probably improve in the operated eye, the actual goal was to allow a lens to be fitted to the eye properly. Previously, the cone was so steep that it was very difficult to get a lens to stay on reliably (and even when it did the gain in acuity was negligible).

As far as I'm concerned, going for the transplant was the right thing to do. I've had keratoconus for over 20 years, and getting a lens to stay on the right eye was getting to be more hassle than the vision gain was worth.

Good luck if you decide to go for it. It's a major step, but as was pointed out to me, corneal transplants are by far the most common and the most successful of all transplants.

rocally · 21-10-2010 2:35pm

Thanks Dero

Can I ask you where you had it done and by who ? I have been referred to a dr. Sheraz Daya in London, I'm a little concerned to be honest Dero I had a period about 2 years after diagnosis where I couldn’t fit a lens in my right eye. Eventually I got a soft perm lens for it and then after 6 years or so I had problems with it and my lens fitter told me we would try an RGP lens once more and that if it didn’t work that was the end of lenses for me. The RGP has worked surprisingly and I have had a RGP lens in my Left eye for 13 years and a RGP lens in my right for the last 2 years. At the moment they aren’t causing me any difficulty apart from the normal problems – I can wear them for up to 14 hours a day.

I recently returned to a specialist in Keratoconus had topography ect, and he stated my eyes were a severe case and he has recommend the DALK procedure asap. I have previously been told to wear lenses as long as I can and only consider surgery if they stop working. He has intimated if I don’t have DALK my eyes may be too damaged for it at a later date should I continue as I am now.

I always felt I'd keep going with lenses for as long as possible.

Cheers
Roccork

Dero · 21-10-2010 3:10pm

rocally wrote: »

Thanks Dero

Can I ask you where you had it done and by who ? I have been referred to a dr. Sheraz Daya in London

I had it done in the Hermitage Clinic in Lucan by Mr. W. H. Lee. I was referred to him initially by my optician to get a pentacam scan done. I have to say, as a patient, I couldn't recommend him highly enough. He seems very knowledgeable, and is very approachable and friendly - and judging by his handiwork in my right eye, pretty good at the surgery too.

rocally · 21-10-2010 3:19pm

Thanks again Dero.

I'm confused as I was told I would have to go to the UK as Ireland didnt have the laser needed to proform DALK - I'll have to check it out - Cheers

Dero · 21-10-2010 3:40pm

rocally wrote: »

Thanks again Dero.

I'm confused as I was told I would have to go to the UK as Ireland didnt have the laser needed to proform DALK - I'll have to check it out - Cheers

Well in fairness, I'm not 100% sure that what I had was DALK. I know for sure that it was a lamellar corneal transplant, so I can't see (haha) what else it could be. I asked whether they used a laser for removing the damaged cornea, but he said that while he can do that, he prefers not to for various reasons. I didn't think a laser actually required for the operation.

gregy2k · 12-11-2010 1:56pm

hi i need to have a corneal transplant in my eyes.
i am looking to speak to someone who has had this done as i am a bit scared about losing my sight

Kiszaba · 17-11-2010 4:24pm

Hi All,
Today we find out that my husband suffer for Keratoconus. We read some about it and my husband is terrified. His left eye is in very bad condition, right a little bit better. Optician recommended surgeon James O'Reilly. Maybe some of You know him? I couldn't find much information in Ireland about Kretoconus treatment. Can some of You help me please?

milehip1 · 06-02-2011 12:43am

gregy2k wrote: »

hi i need to have a corneal transplant in my eyes.
i am looking to speak to someone who has had this done as i am a bit scared about losing my sight

Hi gregg ,dont be scared i think the sucess rate is almost 100% and there seems to be many competent surgons and ophtalmologists in Ireland
I've only glanced thru this thread and havent seen the name of the doctor i used and he's well respected.
i posted abot my experience in another thread gonna try and get a mod to combine them.

irishproduce · 14-03-2011 11:18pm

Hello KC sufferers. I am part of this club too.
Noticed it about 7 years ago, early 20s, but only right eye.
I read bits and pieces about different treatments available but didn't have the patience or desire to go through all of that so went straight for a cornea graft transplant op with Dr Niland in Limerick (I think he is retired now) in 05.

Anyway, over the last 18 months, stitches are breaking all over the place (about 10) and I have to keep going to hospital to get them out - this is normal. There is still a rake of them in here..

Anyway, the new consultant in Limerick (Mr O'Reilly) has suggested I head off to Donal O'Reilly in Dublin to get hard lenses put in.
I just forgot about the surgery for years and thought nothing more of it, vision has been crappy enough in the right eye since the surgery (Like I wouldn't be able to read something of say 20 or 30 point size if it was on a table in front of me). It was crap to begin with anyway.

Anyway, I have a question for people here. The reason I am going to go to get lenses in now is because it is affecting me playing hurling. If I get this lense into my right eye to make shape of my grafted cornea, will it be knocked out while playing hurling? Am I running away with myself thinking i'll be able to play hurling with it in?

Likewise, I am glad to answer any questions about surgery etc that others here may have.

irish

Dero · 15-03-2011 10:43am

Hello irishproduce.
I can't speak for hurling, but I can say that for soccer at least, RGP lenses are not a problem.

I do have to say though, that I stayed away from sports for may years because I was nervous about the lenses.

I started playing 5-a-side football last year (at the ripe old age of 38) and have mixed experiences with the lenses. My right eye has always been problematic with lenses, so I tended to take that out before playing. It would often come out without any provocation anyway, so there was no point in wearing it for football. The left lens however, is as solid as a rock. It's never budged. I do tend to avoid a heading the ball, but it's never been an issue when I do.

I've since had a corneal graft on the right eye just to try and get a stable lens fit on it, so I only wear one lens now anyway.

To be honest, if your fit is any way near normal, you'll be fine. My right eye issues were due to the steepness of the cornea, so that should not be an issue after a transplant.

Tell me this though - do you wear any sort of eye protection when playing hurling? I know my doctor said football was fine, but I have to wear eye protection in case of getting a bang on the eye. I use these.

irishproduce · 15-03-2011 11:09am

Thanks Dero.
I wear a helmet so nothing can get at my eye apart from some grass etc.

What is the cost like for the process of seeing the consultant for lenses and getting a lense fitted? I take it that it is possible to have one only in one eye, right? Thre is no point putting one into my left eye as its grand to be honest.

Do VHI assist with any of it? They'd want to, I pay them nearly a grand a year just for myself!

CXL2011 · 16-03-2011 6:10pm

Hey all,

Have just been reading through all of your experiences. I am currently studying Cross-Linking so hang in there KC sufferers, good things will start to happen in the future of medicine, if all goes to plan.

CXL

irishproduce · 16-03-2011 11:55pm

Anyone able to give me some indication of the costs and whether VHI assist?
I will ring them friday anyway and report back for those that don't know.

CXL2011 · 17-03-2011 10:55am

The cost of cross-Linking is about 1200-1500 per eye. It is not covered by VHI yet, but once the FDA approve cross linking in America then we are hoping it will be recognised as a surgical procedure by VHI etc. Hope that helps.

eddiem74 · 22-03-2011 11:31am

Well I am meeting with Mr. Paul O'Brien (http://www.eyesurgeon.ie/) in the Blackrock Clinic next week to confirm my opticians diagnosis of KC in my right eye, and also left eye to a lesser extent.

I am in my late thirites and my last eye test was 8+ years ago which was fine. Recently by accidient I noticed some text was slightly blurred when watching TV, and upon covering one eye versus the other, noticed in my right eye my vision was slightly blurred which I had not noticed before. My left eye appears to be fine from what I can tell. When I discovered this I promptly made an appointment for an eye test as I assumed I needed glasses (all the family wears them). I had also noticed for quite some time that I had a sensitivity to light (which all makes sense now I guess) but had assumed I was just tired or lights were to bright, etc.

At this point just waiting to see how next weeks appointment goes and see what the next steps are. Fingers crossed !

daycent · 22-03-2011 12:48pm

eddiem74 wrote: »

Well I am meeting with Mr. Paul O'Brien (http://www.eyesurgeon.ie/) in the Blackrock Clinic next week to confirm my opticians diagnosis of KC in my right eye, and also left eye to a lesser extent.

I am in my late thirites and my last eye test was 8+ years ago which was fine. Recently by accidient I noticed some text was slightly blurred when watching TV, and upon covering one eye versus the other, noticed in my right eye my vision was slightly blurred which I had not noticed before. My left eye appears to be fine from what I can tell. When I discovered this I promptly made an appointment for an eye test as I assumed I needed glasses (all the family wears them). I had also noticed for quite some time that I had a sensitivity to light (which all makes sense now I guess) but had assumed I was just tired or lights were to bright, etc.

At this point just waiting to see how next weeks appointment goes and see what the next steps are. Fingers crossed !

Eddie, your story sounds very similar to mine. It sounds like you are a candidate for corneal crosslinking (which I had last July). There is an unusual lack of discussion of CXL in this thread (except for recent posts above obviously). I don't know are people unaware of it, or too far progressed for it to be suitable, but it is a great procedure and has worked wonders for me anyway.

When you think that the alternative is pretty invasive surgery, which is only a treatment as such, and a simple non-invasive procedure like CXL is practically a cure, it seems like a no brainer. My KC has halted now and my vision has improved, and should continue to improve (I don't and never have worn glasses/contact lenses).

If I were you I would make sure that CXL is discussed when you meet with your ophthalmologist (I'm sure it will anyway). I couldn't recommend Dr. Cummins and the Wellington Clinic enough (who perform the procedure).

Best of luck.

CXL2011 · 22-03-2011 12:53pm

Glad to see the CXL helped you Daycent

Dr.Cummings is one of the best surgeons for Cross Linking, he has been doing it since it was approved in 2007 and seems to have the best knowledge of Keratoconus. I would recommend you read up on him before you go to the Blackrock Clinic.

22-03-2011 12:59pm

I just want to echo the sentiments above, regarding the CXL treatment.

I just had the procedure last year and the condition has halted in my right eye. I left it for a long time before getting it checked out but the main goal of the treatment is stopping the progression of KC.

As daycent above mentioned, the alternative is the invasive corneal graft, which was the previous way to treat the disease. However, it seems that this new treatment is quickly becoming the de facto way of treating it and I would certainly recommend you consider it.

I visited the Wellington Clinic on a recommendation from my optician and I found them to be very good and clear in describing what the problems were.

Best of luck with it!

alfa beta · 22-03-2011 1:52pm

Hi all

great thread - just found it by accident and learned more about my eyes and possible treatment in the last ten minutes than I've done in the last twenty years.

After being around the houses with various opticians both here and in the uk and ending up (in both countries) with various mis-diagnoses, glasses and lenses that basically made my sight worse I sorta just gave up on em all and got on with life.

My left eye is relatively good and means I can read, drive etc ok - but I know I'm probably putting a lot of strain on it. My right eye on the other hand is pretty useless - I can see with it, but certainly not read or make out details etc.

Anyway, my question to those of you more knowledgable on the subject is this. I'm 38 now and my sight has been stable for a long time (I've not really noticed any deterioration since I was in my mid twenties.) I'm also happily able to get on with my life as I am (in my opinion) able to see well enough to do the stuff I want to do. So I've no real interest in undergoing any treatment for keratoconus (it's a sort of 'if it ain't broken don't fix it' philosophy I guess). But the thing is should I have? What are the chances of keratocnus getting worse as you move into your forties etc? And also, how will age related natural eye deterioration impact (I was wondering for example if when it comes to testing for long or short-sightedness, I could request that an eye test be done through a pin-hole so that the keratoconus isn't a factor in the test.)

I spose really, I'm wondering if anyone here has experience of keratoconus as they grow older and if my 'laissez-faire' attitude to my 'livable-with' condition is as sensible as I think it to be.

Oh and one last thing - do other people find that when you tell someone what exactly is wrong with your sight they look at you with a sort of stupid smile and just say "Kerry Katona?"

daycent · 22-03-2011 1:59pm

alfa beta wrote: »

Hi all

great thread - just found it by accident and learned more about my eyes and possible treatment in the last ten minutes than I've done in the last twenty years.

After being around the houses with various opticians both here and in the uk and ending up (in both countries) with various mis-diagnoses, glasses and lenses that basically made my sight worse I sorta just gave up on em all and got on with life.

My left eye is relatively good and means I can read, drive etc ok - but I know I'm probably putting a lot of strain on it. My right eye on the other hand is pretty useless - I can see with it, but certainly not read or make out details etc.

Anyway, my question to those of you more knowledgable on the subject is this. I'm 38 now and my sight has been stable for a long time (I've not really noticed any deterioration since I was in my mid twenties.) I'm also happily able to get on with my life as I am (in my opinion) able to see well enough to do the stuff I want to do. So I've no real interest in undergoing any treatment for keratoconus (it's a sort of 'if it ain't broken don't fix it' philosophy I guess). But the thing is should I have? What are the chances of keratocnus getting worse as you move into your forties etc? And also, how will age related natural eye deterioration impact (I was wondering for example if when it comes to testing for long or short-sightedness, I could request that an eye test be done through a pin-hole so that the keratoconus isn't a factor in the test.)

I spose really, I'm wondering if anyone here has experience of keratoconus as they grow older and if my 'laissez-faire' attitude to my 'livable-with' condition is as sensible as I think it to be.

Oh and one last thing - do other people find that when you tell someone what exactly is wrong with your sight they look at you with a sort of stupid smile and just say "Kerry Katona?"

My understanding of KC is that is goes in cycles. It's stable for a number of years, deteriorates, stable, deteriorates etc. (I've gotten so much information at this stage that the details are patchy!). I would definitely recommend contacting the Wellington Clinic and making an appointment with Dr. Cummings. He is not over eager to treat if not necessary, and will be able to give you the correct information.

There is a chance that you will end up needing a corneal transplant if you leave it untreated, surely that makes it worth investigating??

eddiem74 · 22-03-2011 2:22pm

daycent wrote: »

Eddie, your story sounds very similar to mine. It sounds like you are a candidate for corneal crosslinking (which I had last July). There is an unusual lack of discussion of CXL in this thread (except for recent posts above obviously). I don't know are people unaware of it, or too far progressed for it to be suitable, but it is a great procedure and has worked wonders for me anyway.

When you think that the alternative is pretty invasive surgery, which is only a treatment as such, and a simple non-invasive procedure like CXL is practically a cure, it seems like a no brainer. My KC has halted now and my vision has improved, and should continue to improve (I don't and never have worn glasses/contact lenses).

If I were you I would make sure that CXL is discussed when you meet with your ophthalmologist (I'm sure it will anyway). I couldn't recommend Dr. Cummins and the Wellington Clinic enough (who perform the procedure).

Best of luck.

Daycent, depending on what is found I for sure would consider CXL. I believe I need to go to the laser room (for a scan?) in advance of my appointment. Did you find Dr. Cummins and the Wellington clinic through any particular path or that was just where you were referred and went with it?

CXL2011 wrote: »

Glad to see the CXL helped you Daycent

Dr.Cummings is one of the best surgeons for Cross Linking, he has been doing it since it was approved in 2007 and seems to have the best knowledge of Keratoconus. I would recommend you read up on him before you go to the Blackrock Clinic.

CXL2011 you seem to have some insight into this area, is there are reason why I should not consider Mr. O'Brien who I have been referred too? He seems well qualified, etc...

Deleted User wrote: »

I visited the Wellington Clinic on a recommendation from my optician and I found them to be very good and clear in describing what the problems were.

MoonHawk, did Dr. Cummins also carry out your procedure ?

daycent · 22-03-2011 2:34pm

eddiem74 wrote: »

Daycent, depending on what is found I for sure would consider CXL. I believe I need to go to the laser room (for a scan?) in advance of my appointment. Did you find Dr. Cummins and the Wellington clinic through any particular path or that was just where you were referred and went with it?

CXL2011 you seem to have some insight into this area, is there are reason why I should not consider Mr. O'Brien who I have been referred too? He seems well qualified, etc...

MoonHawk, did Dr. Cummins also carry out your procedure ?

As far as I know Eddie, the Wellington clinic is the only place that does CXL (I could be wrong....) but Dr. Cummins is definitely considered the authority on CXL in Ireland. He is friends with the guy who invented it, and seems to be researching/refining it constantly.

The Wellington clinic perform 2 forms of cross linking, one is cross linking on it's own, and the other is in conjunction with laser surgery (to improve sight more after cross linking). I just got the bare CXL, as it was recommended on it's own by my ophthalmologist, Dr. Condon, based in Waterford (who referred me). I was referred to him by an Optician in Specsavers in Clonmel, who spotted it during a routine eye exam (thank you wherever you are!!).

You would have to get some eye tests initially to confirm your diagnosis. These are fast and straightforward. I get these tests done each time I visit for a checkup, to see if I have improved (check ups are included free for a year after the procedure).

Any more questions feel free to ask...

Keratoconus

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