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Keratoconus

1356715

Comments

  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    daycent wrote: »
    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...

    So it is likely the ophthalmologist Mr. O'Brien I have been referred to will potentially send me to Dr. Cummins anyway, assuming CXL is the next step?

    Or could I make an appointment with Dr. Cummins directly? Not sure how long that would take, and whether I should let slide next weeks appointment?


  • Registered Users, Registered Users 2 Posts: 842 ✭✭✭daycent


    Well to be honest Eddie, it might make sense. I was referred to Dr. Condon in Waterford by the optician in Specsavers to confirm the diagnosis (although she seemed pretty certain herself). Dr. Condon then performed some quick tests, I was there for about 10 minutes and it cost me €150.

    Also, he said he didn't have the equipment necessary to get the full picture of my condition, so the tests were repeated (and expanded upon) in the Wellington Clinic who have more extensive testing equipment.

    As I was saying, from my experience of Dr Cummings, he doesn't seem to be keen to perform any more treatment than necessary. I got the least expensive version of the treatment, he actually said that also getting the laser treatment wouldn't really be necessary in my case.

    Contrast this with my experience in Specsavers, when one optician (not the one that diagnosed me, I'm eternally grateful to her!) was all ready to get me set up with a nice new expensive pair of glasses. If that was all that happened I would be none the wiser to Keratoconus and never know until it was too late..... I really thank my lucky stars every day that it was spotted!

    If you were to make an appointment directly with Dr. Cummings I would think you would be waiting a number of weeks. There was about a 3 week wait the last time I booked a check-up.


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    Hey Eddie,

    Sorry I don't know how to reply directly to your post: maybe someone could explain how?!

    I do not know much about Dr. O'Brien, I am sure he is equally good at what he does, However it is always good to look around and see what procedures each consultant does as it can vary.

    In regards to the Wellington, you just ring and book an appointment with Dr.Cummings for an initial assessment. He will explain evrything to you and see whether you need CXL. Some people are fitted with contact lens which will slightly improve their vision if CXL is not required.

    As for the gentleman who asked what would happen if Keratoconus was to go untreated- It is progressive so if you leave it unattended, it will go past the stages of being suitable for Cross Linking and you will have to have a transplant. I know which one I would choose!


  • Posts: 0 [Deleted User]


    @eddie, no,Dr. Corkin performed my operation,he's the other doctor there and he's very good...both he and Dr. Cummins deal with KC patients.


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    daycent wrote: »
    Well to be honest Eddie, it might make sense. I was referred to Dr. Condon in Waterford by the optician in Specsavers to confirm the diagnosis (although she seemed pretty certain herself). Dr. Condon then performed some quick tests, I was there for about 10 minutes and it cost me €150.

    Also, he said he didn't have the equipment necessary to get the full picture of my condition, so the tests were repeated (and expanded upon) in the Wellington Clinic who have more extensive testing equipment.

    As I was saying, from my experience of Dr Cummings, he doesn't seem to be keen to perform any more treatment than necessary. I got the least expensive version of the treatment, he actually said that also getting the laser treatment wouldn't really be necessary in my case.

    Contrast this with my experience in Specsavers, when one optician (not the one that diagnosed me, I'm eternally grateful to her!) was all ready to get me set up with a nice new expensive pair of glasses. If that was all that happened I would be none the wiser to Keratoconus and never know until it was too late..... I really thank my lucky stars every day that it was spotted!

    If you were to make an appointment directly with Dr. Cummings I would think you would be waiting a number of weeks. There was about a 3 week wait the last time I booked a check-up.

    Just a quick update...

    I've gone ahead and made an appointment with Dr. Cummings as its seems like the right thing to do rather than have to bother going to him anyway for a 2nd/final opinion. May as well save myself €150 and wait a few weeks.

    My new appointment is now for May 5th, only because Dr. Cummings will be away globe-trotting giving speeches and presentations on KC. :) His office are also posting me out an informational DVD on KC. I must say all interactions are very positive so far.

    Thanks to everyone for your inputs and guidance to date. I will post back after my consult in May.


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  • Registered Users, Registered Users 2 Posts: 842 ✭✭✭daycent


    Good stuff, I've had a very positive experience with the Wellington Clinic/Dr. Cummings, highly recommend them.

    Best of luck.


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    Good choice.

    I just found out that Aviva and Quinn and are now covering CXL (procedure code 2801) which is fantastic news!

    Hope your evaluation goes well in May :)


  • Registered Users, Registered Users 2 Posts: 842 ✭✭✭daycent


    CXL2011 wrote: »
    Good choice.

    I just found out that Aviva and Quinn and are now covering CXL (procedure code 2801) which is fantastic news!

    Hope your evaluation goes well in May :)

    Well feck it anyway..... I've been with Aviva a while but got the procedure done last July... not much good to me now I suppose.


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    You could always take it up with Aviva? You wont know unless you ask :)


  • Registered Users, Registered Users 2 Posts: 842 ✭✭✭daycent


    CXL2011 wrote: »
    You could always take it up with Aviva? You wont know unless you ask :)

    I will. Thanks :)


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  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    CXL2011 wrote: »
    Good choice.

    I just found out that Aviva and Quinn and are now covering CXL (procedure code 2801) which is fantastic news!

    Hope your evaluation goes well in May :)

    Yeah I had seen some mention of that on websites but wasn't sure if it was true seen as many comments stated it wasn't covered, so that's good to know. Am sure glad now my company changed my insurance to Avivia from VHI this year ! :D


  • Registered Users, Registered Users 2 Posts: 842 ✭✭✭daycent


    eddiem74 wrote: »
    Yeah I had seen some mention of that on websites but wasn't sure if it was true seen as many comments stated it wasn't covered, so that's good to know. Am sure glad now my company changed my insurance to Avivia from VHI this year ! :D


    Ah well, at least if eye number 2 needs to get done I might save a few quid!

    Eddie, you're after saving a fortune in a few posts!!:D


  • Closed Accounts Posts: 1,382 ✭✭✭lastlaugh


    Hi All,

    Very interesting thread.
    I was told I had KC in my early 20's and am know in my mid 30's. I must have a relatively mild case of KC as I can function pretty normally with Glasses. Without them I would be like Clint Eastwood, squinting my head off!
    Both my eyes have quite different perscriptions and I get pretty big halos from each eye, especially orange street lights, the moon(s), car headlights at night, leds on electrical equipment etc. It's become a part of life at this stage I suppose and have learned to live with them.
    I had a bad dose of Ocular Herpes over 10 yrs ago which left a scar on the cornea of my left eye (not directly in the center thankfully).
    I had another bout of it over christmas when I had a really bad flu. It's a nasty little virus (Herpes Simplex Type 1), the same one responsible for common Coldsores.
    The virus can travel around the nerve in your face and can manifest itself on your cornea. When your really stressed or your immune system is compromised it is liable to reactivate and you need to get it seen to very quickly, Zovirax is prescibed which stops the virus replicating.
    After that last one I now have a 'Stromal scar' that looks like a little cloud if I shine a light on it up close.
    But anyway, after looking at Crosslinking on YouTube, I'd rather leave my cornea alone for fear of getting another outbreak.

    CLX2011, have you ever heard of Crosslinking being carried out on someone with a history of Ocular Herpes and/or Corneal/Stromal scarring?

    Has anyone tried intacs or know of anyone who had it done?
    It looks like a really practical way of restructuring the shape of the cornea.

    Does anyone know if RGPs eliminate the 'Halo effect' completely?
    (I haven't seen a single moon in a long time)
    How long does a pair of RGPs last before you have to replace them?
    AND
    Are RGPs expensive?!
    Phew!

    Thanks All


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    lastlaugh wrote: »
    Hi All,

    Very interesting thread.
    I was told I had KC in my early 20's and am know in my mid 30's. I must have a relatively mild case of KC as I can function pretty normally with Glasses. Without them I would be like Clint Eastwood, squinting my head off!
    Both my eyes have quite different perscriptions and I get pretty big halos from each eye, especially orange street lights, the moon(s), car headlights at night, leds on electrical equipment etc. It's become a part of life at this stage I suppose and have learned to live with them.
    I had a bad dose of Ocular Herpes over 10 yrs ago which left a scar on the cornea of my left eye (not directly in the center thankfully).
    I had another bout of it over christmas when I had a really bad flu. It's a nasty little virus (Herpes Simplex Type 1), the same one responsible for common Coldsores.
    The virus can travel around the nerve in your face and can manifest itself on your cornea. When your really stressed or your immune system is compromised it is liable to reactivate and you need to get it seen to very quickly, Zovirax is prescibed which stops the virus replicating.
    After that last one I now have a 'Stromal scar' that looks like a little cloud if I shine a light on it up close.
    But anyway, after looking at Crosslinking on YouTube, I'd rather leave my cornea alone for fear of getting another outbreak.

    CLX2011, have you ever heard of Crosslinking being carried out on someone with a history of Ocular Herpes and/or Corneal/Stromal scarring?

    Has anyone tried intacs or know of anyone who had it done?
    It looks like a really practical way of restructuring the shape of the cornea.

    Does anyone know if RGPs eliminate the 'Halo effect' completely?
    (I haven't seen a single moon in a long time)
    How long does a pair of RGPs last before you have to replace them?
    AND
    Are RGPs expensive?!
    Phew!

    Thanks All

    I'm sure it has been carried out, although doctors are always cautious of the herpes virus re-appearing after surgery. They tend to avoid CXL if Keratoconus is stable and there are no signs of progression. Do you get your eyes checked regularly?

    Dr. Cummings in The Wellington Eye Clinic inserted Intacs into afew eyes last year but I think it was a trial run and is not available as a standard surgery just yet. The results were pretty significant, as far as I am aware.

    RGPs may or may not get rid of the 'halo' effect, it depends on afew factors such as pupil size and if the lens drops low on blink. I dont know much about this though...

    RGPs lenses are usually changed every year to 18 months, depending on the person. If a person has lots of protein in their tears, it can lead to lens deposits and discomfort, meaning their lenses would have to be replaced more frequently. However some people use the same lens for many years.

    It all depends on the person really.

    Finally, Im not too sure about cost but they are pricey seeing as theyre designed to specifically fit your eye. Maybe you should look into that.

    Hope that helps;)


  • Closed Accounts Posts: 1,382 ✭✭✭lastlaugh


    CXL2011 wrote: »
    I'm sure it has been carried out, although doctors are always cautious of the herpes virus re-appearing after surgery. They tend to avoid CXL if Keratoconus is stable and there are no signs of progression. Do you get your eyes checked regularly?

    I suppose if a person was put on Acyclovir tablets over the course of the treatment it would reduce the likleyhood of an outbreak. (Not that I'm an expert or anything).
    Hopefully my Kerataconus has stabilised. I only really go for an eye test when I've lost my glasses or they get scratched or something. And I only ever go the Royal Victoria if I get a Herpes episode, maybe three times over the last 11 yrs. I've never really gone to see the same optician more than twice, it would be useful to see the change in prescription over time I suppose. Now that I think of it all the opticians I've been to, Kerataconus was never really mentioned, except for the fist one years ago when I was told I had it...
    I had told a DR in the RV that I had Kerataconus while I was attending the Corneal Clinic years ago and he checked my eyes and said that the Astigmatism was worse in my right eye, which is very short sighted.

    I'm going to book an apointment to see if RGPs would suit me, so I'll have a proper eye check then.
    CXL2011 wrote: »
    Hope that helps;)

    Yes it does, thanks :pac:


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    Okay so time for an update after my visit to the Wellington Eye Clinic to see Mr. Cummings.

    Well Mr. Cummings confirmed I have KC in both eyes, my right eye being worse, and thats the one I also have slightly blurred vision in currently so was expecting something there. Upon a review of all the tests/scans with me it showed I am only in Stage 1 (or maybe it was grade 1) of the condition in both eyes. Given this along with my age (late thirties), and the fact the condition tends to progress in 7 year cycles, typically slowing to stopping between the age 45-50, Mr. Cummings suggested we adopt a wait and see approach with a follow-up in 1 years time to establish if there was progression or not. He was of the opinion, or lets say his 'gut feel' was it would not progress much further but if we did see signs of progression we could then consider CXL.

    So what about the fact my vision is blurred in my right I hear you ask! Well I asked that too........I told Mr. Cummings from my own reading up I had come in expecting to be booked in for CXL and to possibly end up with glasses given my eyesight was still relatively good in my left eye and slighly impaired in my right. So we explored this futher that I was now expressing a desire to improve my vision and not just treat KC. So we then proceeded to do some further tests including an eye test of sorts. The result of which was my brain seems to have re-trained and compensated for the fact my right eye is blurry, and the eye tests showed when trying to correct my vision it was actually making it worse as a result. So if I wanted I could have one contact lense to improve vision in my right eye, when needed, but Mr. Cummings felt most people would not bother with this or use it and I myself was not keen on having a contact lense (no good reason, just wasn't).

    So from some further discussion and a re-review of my scans Mr. Cummings suggested I could be a candidate for SimLC (Simultaneous Laser and CXL) as I still had sufficient corneal thickness to do this and overall my eye was in great health. This would involve laser first, followed by CXL in the same procedure (2 for 1) and then in 1 years time there would still be sufficient corneal thickness left to further fine tune, if required. So I now need to decide what to do and am leaning towards getting this done.

    Today I made an inital call to Aviva to assess coverage under my plan. They unfortunately cannot provide any useful information without a procedure code of which I did not have one for SimLC. While on to them I asked about CXL and gave them the 2801 code which they confirmed is on their system however it is one of the few codes I was told that requires pre-approval so the consultant needs to justify it to them in advance. I will be getting back on to the Wellington Eye Clinic next to see if their is a code for SimLC or how to progress further. At €2,400 I need to know exactly what would be covered before proceeding.


  • Registered Users, Registered Users 2 Posts: 220 ✭✭dueyfinster


    Hey,

    I have KC also, diagnosed when 16, 22 now. Thinking of CXL now as I am finishing College, moving on to a job and a choice of VHI/Quinn comes with it (interested if anyone has any more info on this).

    I go to Tara Murray in Vision Express Tallaght, she has been great. I got an eye test in Liffey Valley branch, was referred to place on the Canal (near barge pub). Ten minutes, €150, some puzzled look and I was diagnosed :rolleyes:

    I wear RGP lenses and have had had pretty good luck with them. Average one pair a year, at €300 an eye it adds up, so CXL at €1.5k-2k makes sense to halt it.

    I do the eyewash (Johnsons!) and take Systane like others have mentioned. I was also recommended Udo's Choice (mixture of Omegas, flaxseed, linseed), which I always forget to take, but it improves tear quality.

    I can wear lenses as long as I want really, though when intolerance comes around (may be allergy related also) I usually get a new pair.

    Worst thing for me was getting used to the lenses and sunburn from bright light (before I got a good pair of Polarised Raybans). I remember fitting them first, yer one was ready to box the head off me! Now I can do anything to my eyes !

    I remember talking to you on the phone Ray, you behind KCWatch.net many moons ago?


  • Closed Accounts Posts: 1 metallic2010


    I also have an appointment with Dr. Cummings this month. If am I suited than I let the SimCL procedure done.

    I am from Germany, Berlin and I fly to him because he is my last hope so to say. I can´t stand rgp contacts so I am just wearing a piggyback system. But I only see about 70%. Thats why I am unemployed since some months. I have an analytic job with complete PC-work. So my vision is not enough for that.

    Eddie you said maye there can be a fine tuning on your eye one year later?
    How thick is your cornea, do you know that? Normally you get such colourful topographies. That really interests me. To have this option in your case is very positive! My keratoconus is more advanced. My left eye is already crosslinked since 7 months.

    By the way I really did intensive research on new surgerys, laser systems and treatments of keratoconus in general. Dr.Cummings seem to be an absolute leading expert in this.

    It is strange that the pentacam, a german technology product is worldwide used for kc, but I have to fly to Dublin to get an treatment here. By the way I have ever liked to be some day in Ireland but It would have been better in other conditions.

    Andi


  • Registered Users, Registered Users 2 Posts: 4,991 ✭✭✭Shane732


    Great to see that this thread is still going. While I haven't been commenting on this thread I have been following it.

    I haven't actually been to the Wellington Clinic yet but do intend on going in the coming months. As noted in my previous posts I'm currently with Dixon Hempenstall and I consider them excellent in relation to the condition and my lens. Naturally they can't provide the same treatments (such as CXL, ring segments etc..) as somewhere like the Wellington but for general care and awareness of the condition they've been excellent.

    I must admit I'm quite surprised by the number of people who have had CXL here. It's my understanding that CXL/CCR is still in the very early stages of development relative to treatments for other conditions. The use of LASIK with CXL is certainly still in the very early stages of development.

    In any event, it's my understanding that the condition of my left eye is too far progressed for CXL to be of any real benefit - unfortunately from the age of 17 to 18 it progressed rapidly and is now very severe (I'm basically blind in my left eye without a lens and the shape of lens I require is quite unique!). This was my fault as I didn't properly recognize that my eyesight was deteriorating and go for an eye test until it was too late.

    CXL would probably be of some benefit in my right eye.

    Are some/all of you being told that CXL is a permanent treatment? I'd be very interested to know this. It's my understanding that CXL can be far from a permanent treatment, especially in a case such as mine (i.e. for someone aged 22). I note that some posters have mentioned that the condition can progress in 7 year cycles - it's my understanding that this can actually be as low as 2 year cycles in some cases.

    Anyone I've seen in relation to CXL (this wouldn't be Dixon Hempenstall) has sold the treatment as something that will delay the onset of the condition but ultimately the eye may very well deteriorate in time again.

    Also I see that some of you are able to wear glasses and normal soft lens (as opposed to any of the RGP alternative options), is this before or after CXL? From day one glasses haven't been an option for me - I've had to wear RGP lens.

    Thanks to Dixon Hempenstall I've come across a large lens for my left eye that I can actually wear on nights out. The large lens is well protected by both eyelids and it's basically impossible for it to pop out of my eye. However, because of the size of the RGP lens it can be difficult to wear it for prolonged periods of time. I therefore wear a normal RGP lens (i.e. small lens) in my left eye on a day to day basis.

    I've been lucky with the small RGP lens that I wear on a day to day basis in my left eye in that I haven't lost it in a good while (touch wood!). I've no problem with my right lens, as the shape of the lens in normal and hence doesn't pop out as easily.

    Overall the lens have been a lot more successful since the time I put the OP up and I'm happy with the lens.


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    I have KC also, diagnosed when 16, 22 now. Thinking of CXL now as I am finishing College, moving on to a job and a choice of VHI/Quinn comes with it (interested if anyone has any more info on this).

    From an earlier post here it was mentioned only Quinn/Aviva cover the CXL procedure (code: 2801). I can confirm that Aviva do cover as I rang them Friday however it is one of their only procedures which requires pre-approval. I would definitely check with your possible insurers first to see if they cover for that code before signing up.


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  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    Eddie you said maye there can be a fine tuning on your eye one year later?
    How thick is your cornea, do you know that? Normally you get such colourful topographies.

    Hi Andi,

    Please keep in mind it was my first visit and there can be a lot to take in as you said so many scans, topographies, measurements, figures, etc., so I hope I don't incorrectly recall something. :o

    Yes Dr. Cummings said as part of the laser portion of the SimLC procedure that they would not use the laser to try and 100% correct things but instead they usually go for around a 75% correction as they often get some of the other 25% through post-op healing. I believe my corneal thickness was in the high 400's and Dr. Cummings suggested a correction amount which would leave me around 420 or so, which he said would still leave enough thickness to do so minor adjustments/fine-tuning after a year, if required.

    Hope that makes sense/helps.

    Eddie


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    Shane732 wrote: »
    I haven't actually been to the Wellington Clinic yet but do intend on going in the coming months. As noted in my previous posts I'm currently with Dixon Hempenstall and I consider them excellent in relation to the condition and my lens. Naturally they can't provide the same treatments (such as CXL, ring segments etc..) as somewhere like the Wellington but for general care and awareness of the condition they've been excellent.

    Shane it was only €100 for my visit, scans, tests, and consultation with Dr. Cummings. I would really suggest you don't wait and try and make an appointment for a 2nd opinion to see where things stand given the progression you appear to have experienced so far.
    Shane732 wrote: »
    I must admit I'm quite surprised by the number of people who have had CXL here. It's my understanding that CXL/CCR is still in the very early stages of development relative to treatments for other conditions. The use of LASIK with CXL is certainly still in the very early stages of development.

    CXL has been around for over 10 years and approved in Ireland/EU since January 2007 when Dr. Cummings and team have been using it. CXL is currently in the last stages of FDA approval in the US which for some reason is having an bearing on insurance companies covering the procedure over this side of the water.

    SimLC (Laser & CXL) is new but again the statistics are very positive.
    Shane732 wrote: »
    Are some/all of you being told that CXL is a permanent treatment? I'd be very interested to know this. It's my understanding that CXL can be far from a permanent treatment, especially in a case such as mine (i.e. for someone aged 22). I note that some posters have mentioned that the condition can progress in 7 year cycles - it's my understanding that this can actually be as low as 2 year cycles in some cases.

    Anyone I've seen in relation to CXL (this wouldn't be Dixon Hempenstall) has sold the treatment as something that will delay the onset of the condition but ultimately the eye may very well deteriorate in time again.

    From what I know and am hearing CXL is used to stop the progression and there have been very few cases where progression has continued and a 2nd round of CXL was needed. I would assume the 7 year cycle is the general trend there can always be worse cases?

    If you ring the Wellington Eye Clinic they will send you out a information pack containing all that they do there including DVDs on KC if they know you have it. This will provide you some good information even before you plan a visit.

    Best of luck.


  • Registered Users, Registered Users 2 Posts: 1,098 ✭✭✭glineli


    Hi

    I just came across this thread and glad i did.

    I have KC for 10 years and just cant wear RGPs anymore. Does anyone know if CXL is covered by VHI?


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    Hey there,

    As far as I know, Aviva and Quinn will cover the procedure but Vhi have not released anything yet.

    Have you been to see a consultant about CXL yet?


  • Registered Users, Registered Users 2 Posts: 1,098 ✭✭✭glineli


    CXL2011 wrote: »
    Hey there,

    As far as I know, Aviva and Quinn will cover the procedure but Vhi have not released anything yet.

    Have you been to see a consultant about CXL yet?

    Not yet, i was waiting til it was covered. I see Mr O Malley in Dixon Hempenstall and he is very good. But i just cant wear the RGPs anymore, they drive me mad.

    Would it be wirth going to see a consultant anyway, Mr Cummings in the wellington?


  • Registered Users, Registered Users 2 Posts: 13 CXL2011


    glineli wrote: »
    Not yet, i was waiting til it was covered. I see Mr O Malley in Dixon Hempenstall and he is very good. But i just cant wear the RGPs anymore, they drive me mad.

    Would it be wirth going to see a consultant anyway, Mr Cummings in the wellington?


    It is definitly worth going to see Mr. Cummings. Previous posters seem to be very pleased with him and he is the best around.

    Let me know how you get on.


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    glineli wrote: »
    Not yet, i was waiting til it was covered. I see Mr O Malley in Dixon Hempenstall and he is very good. But i just cant wear the RGPs anymore, they drive me mad.

    Would it be wirth going to see a consultant anyway, Mr Cummings in the wellington?

    Well a visit to Mr Cummings might be worthwhile for a 2nd opinion if you have been with you current specialist for a long period. It only cost me €100 for that initial consultation a few weeks back with Mr Cummings and you would hope your health insurance will cover a portion of that under consultant visits. If Mr Cummings is who you would be going to eventually to have the CXL procedure performed well then it might be no harm to get an initial baseline of tests in their system now.


  • Closed Accounts Posts: 2 dcummo


    hi all

    heres my little story.
    7/8 years i was diagnosed with kc but they never told me what it was or explained anything to me about it i got fitted with a hard contact and was told on your way..so some years later im now unemployed and was looking to go back to college in september but new my eyes where shot for reading and studting so i went back for an eye test this took two opticians to try do the test and when they figured it out the optician told me i had a decease in my eyes and if nothing was done i would blind and my eyes could rupture,a bit extreme but he got his point across. lol
    so ater some letters where sent i had an appointment with mr cummings in the wellingtone eye clinic on tuesday,so it works out i have grade 4 kc and my right eye is at the smallest thickness which they can do the cxl.but he also said i should combining it with keraflex which is a fairly new treatment,but what it also does is leaves the eye with the availability of other procudures down the line as he said everyyear they are finding new solutions..

    my next problem if anyone knows.
    im on the unemployment and have the medical card but at a cost of 2400 per eye i cant afford this,it was a struggle getting the consultantcy fee together,where do i go from here, can i get this operation done through the hse or somewhere or are they going to let me go blind ...
    because my right eye is so bad i need to get things moving fairly quickly.

    n.b. i highly recommand the wellington eye clinic and mr cummings certainly knows his stuff.


  • Registered Users, Registered Users 2 Posts: 2,027 ✭✭✭eddiem74


    dcummo wrote: »
    hi all
    my next problem if anyone knows.
    im on the unemployment and have the medical card but at a cost of 2400 per eye i cant afford this,it was a struggle getting the consultantcy fee together,where do i go from here, can i get this operation done through the hse or somewhere or are they going to let me go blind ...
    because my right eye is so bad i need to get things moving fairly quickly.

    Have you asked in the Wellington what options you have? I assume that is where you will need/want to have this procedure or is it available elsewhere? I am working on get CXL myself but things are slow with my insurance company approval which I know you don't have the luxury of, so have not checked elsewhere for options just planning on going to the Wellington.

    I know my wifes mother has also had some eye procedures in the Mater via medical card.


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  • Closed Accounts Posts: 2 Degall


    Hi Folks, new to this Board, have found it very helpful and informative. Not personnally a sufferer of KC, but am a dad of a 22 year old who is struggling to fit his lenses. Any tips for him (or me) in how to fit the lenses? Sorry for the siplistic question, but it is pitiful to see him struggling to fit the lenses - somewhat ironic in that most of the difficulty is a result of the KC itself (inability to see what he is doing). :)


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