Keratoconus

glineli · 04-09-2014 04:32PM

Where did you get it done?

super106 · 05-09-2014 12:04PM

Hi

Where did you have it done and how was the whole procedure, il be facing down that road when ive had enough of my lenses, iv had keratoconus for simular time as you and im the same age,

Barry

Dodo bear wrote: »

Hi
I have had kerataconas in both my eyes for 15 years now. I'm 30 now. My right eye deteriorated more and I had little or no vision in it. My last option was a corneal transplant. I had it in February of this year and so far every thing has gone great. My consultant is very pleased with how the stitches look and I am now down to one steroid drop per day. I can't play contact sports or swim for now but that's ok. I should be getting some stitches out at my next appointment does anyone who has had this surgery know is this sore and does it leave you with side effects? I also find on some occasions my eye is gritty and tired feeling and begins to look very sleepy and is hard to open, also I think it maybe more sensitive to make up. Does anyone else feel this? I have felt this a lot since my transplant, but my consultant says my eye looks great.

muthupr · 11-12-2014 12:29AM

Hi All,

I guess I'm bit late into this discussion, I'm similar to many others discussing in this thread having KC for 15+ years. It is really gone bad now, as I'm not able get any lenses fitted to both my eyes. Luckily I'm able to survive with a set specs for my right eye. Now I have the only option of Corneal transplant, which I'll be having on mid Jan at Eye and Ear by Dr.Power. Can anyone share their experience if you had the transplant done already.

Thanks
Muthu

Dodo bear · 11-12-2014 02:07AM

Hi
I had my transplant done with mr power in feb last year in the eye and ear. I was very nervous going in as i really didnt know much about how i was going to feel, only that my eye would feel gritty.
As i said above i have had the condition for 15 years and no vision in right eye in the last few years.
After the operation i was very groggy as you would be. There was a bit of pain as i woke after surgery but as soon as i said it they gave me pain relief. After that it was just nurofen or paracetmol which i didnt really take as the pain was not to bad. Then it was lots and LOTS of drops for a few weeks, before i went back to mr power again for my check up. You have to weAr a plastic eye patch at night time as your eye is EXTREMELY sensitive to touch. Your eye should be cleaned regularly which is so important, but you will be told all about cleaning and drops and eye care. My whole eye ball looked bloody after the surgery, But nothing to worry about. Im ten months after the surgery now and im on only 1 steroid drop a day. I got one stitch out last wk (which didnt hurt, just weird seeing a tweezers coming so close to your eye ðŸ˜³) he says my eye is looking great and my vision is great. I can read a vision chart now. Before i couldnt see your fingers if they were held close to my face! I still cant play sports ( like football) or swim but thats grand. I go to the gym instead.
When i had the surgery i took 2 wks off ( i kinda needed more time that that, which i would recommend taking if you can) including my time in hospital. Which was a full day of just waiting in my room being anxious and getting my blood pressure monitored and filling out info forms, next day was surgery and
next day was recovery and i was out the following dAy.
I would say my biggest side effect was sensitivity to light( invest in a pair of sun glasses) and in the months after very tired eyes after a long day, or sore eyes if i wear alot of eye makeup, which i try to only do on a night out. (I loved my eye make up

Overall im happy i got it done and seeing great results with my vision with out glasses r contact lenses yet (still to early for them)
Hope it goes well for you in janurary and ask mr power lots of questions, because it can be quiet daunting not knowing whats going to happen. I would love to hear how you get on.

Good luck ðŸ‘ðŸ‘€
[I have the only option of Corneal transplant, which I'll be having on mid Jan at Eye and Ear by Dr.Power. Can anyone share their experience if you had the transplant done already.

Thanks
Muthu[/quote]

muthupr · 11-12-2014 06:41PM

Thanks a lot Dodo bear, for sharing your experience. How long did you take to resume your office work? and how long before you could drive?

Dodo bear · 11-12-2014 09:02PM

Hi muthupr
I went back about a wk and a half after the surgery. I work with children with special needs, so was not looking at a computer all the time, but i had to be very very careful not to get a bang in the eye as somthing like that could cause rejection. To be honest i think i went back too early as my eye was still quiet raw and sore. You will know yourself how you feel after its done and how lond you need off. I think they say around 2-3 wks. But it also depends on your job type. I drove when i went back to work. As i said my eyes were extremely sensitive to light even when it was dull so i always needed my sun glasses and still have some sensitivity to light now.

muthupr wrote: »

Thanks a lot Dodo bear, for sharing your experience. How long did you take to resume your office work? and how long before you could drive?

muthupr · 11-12-2014 10:44PM

Thanks once again, that was very helpful and made me a little bit relaxed

Shane732 · 11-01-2015 01:16PM

So just to give an update on my position. I started this thread in 2010 and have seen various different consultants, had cross linking and keraflex and had countless trips to my optician Dixon Hempenstall.

The keraflex procedure was totally unsuccessful and left me with worse vision than I had before the procedure. In fact the shape of my eye was actually worse than before the procedure. As a result of the keraflex I wasn't actually able to get a lens on to my eye at all and had totally blurred vision in my left eye. I couldn't tell you how many fingers you were holding up if you were right in front of me.

Anyway over the last 18 months I've been left with only 2 options - either do nothing and live with the vision or have a cornea transplant. I eventually decided to have the transplant with Mr. Fulcher. I have keratoconus in my right eye as well, albeit not as far progressed. I was conscious that I could function with poor vision in one eye but if the vision in my right eye was to deteriorate then I would be in trouble.

The operation went fine, my experience was similar to what others have noted on this thread. I actually haven't had to take any pain relief since the operation last week. The pain in the eye is minimal. As others have stated it drops and cleaning appear to be key.

At the moment the vision is better than before the operation but there's still a lot of improving to do. I'm told it will be at least 3-4 weeks before we know what the refraction in the eye will be and whether anything else needs to be done to improve the refraction. I'm told the vision can take months to improve to what it will be going forward.

My stitches are progressive as opposed to individual stitches.

S.M.B. · 11-01-2015 02:59PM

That's great to hear. Hope the good progress continues.

I'm approaching 15 years since I was diagnosed with KC and I've yet to face the operating table. I have been just about getting by with various contact lens.

I do feel that I'll have to bite the bullet soon and get the transplant done within the next 18 months or so.

irishproduce · 12-01-2015 12:24PM

@dodobear

I had transplant in 2005

You will never get all of the stitches out, some remain permanently.
I got them out gradually. What happens is they break over time, as the cornea beds in. This takes years because of the small blood flow to the cornea.
I had my most recent ones out in 2012 and even during that surgery, I had an incision made into the new cornea to relieve tension/ stress/ pull on it, so that a new type of lens could be fitted to allow me to play hurling. I also had an extra one or two stitches put in, can't remember how many.
That went well too.

I would say that, when a stitch breaks, you will know. It will be like a grain of sand is inside your eye - it is awful uncomfortable and your eye will start watering up and getting irritated until you go to the hospital to get one out.
I used to just go to the regional hospital and an eye doctor would sit me on the thing they use for looking into your eyes, put on some numbing drops and then get out the tweezers and get to work. Takes a few minutes.

It's been settled since 2012 though thankfully, haven't had a bother with it.

I only wonder how long the transplant lasts as I am aware they are not forever

- I am very happy with my one, wouldn't want to lose it

Shane732 · 12-01-2015 01:17PM

How long did it take for your vision to improve? To what level did the vision improve? For example have you got driving vision without glasses/lens?

irishproduce · 12-01-2015 01:52PM

No Shane, certainly not.
Mine was poor to begin with, I noticed it after a very long time.
I covered my left eye one day and realised the vision in my right was dire. Went specsavers - referred as they couldn't make sense of my vision/ eye.
Consultant said you have KC. Straight down surgery route.
I honestly can't remember the vision when I had the surgery but I recall it was pretty crap. With the new one in, I can see colours, barely make out familiar faces from 2 metres away but anything further and it is not possible.

With that said, it allowed me to get fitted with a hard/ soft lens and with that on, I can pretty much see anything that you would normally expect to be able to see.

It wasn't a silver bullet, I don't think it was meant to be but what it has allowed is for the consultants to control it, take it on their terms and use lenses to adjust for where the transplant falls down.

boo84 · 17-03-2015 08:41PM

Hi,

I had CXL carried out in my right eye in June 2014. Everything was fine after the procedure (well, apart from the terrible pain of the first few days!) and my eye was healing fine. However, at the end of September, my vision started to deteriorate and I started to get severe headaches and eye strain. I also contracted an allergy in my eye at the same time.

Following 3 separate visits to the opthamologist in my local hospital the allergy was cured. If I wanted to improve my vision and eye strain I was told that I needed a contact lens. They said that the CXL had stabilised the condition in my right eye. I went to the contact lens specialist in the hospital and was told to wait and see what they say in the Eye & Ear about a lens.

I finally got back to the Eye & Ear for my 6 month check up last month (my original appointment was cancelled - which seems to happen quite often) and was told that the condition had stabilised and they won't be doing anything else. I asked about a lens and they said I could get one if I wanted to. I have an appointment with the contact lens clinic next month (Donal O'Malley).

I don't know if I should go this clinic or should I go private. There's a strong possibility that I won't be able to tolerate an RGP lens. Also, I live 100 miles from this clinic so I would have to take a day of work to attend it each time. My vision is fine with the glasses I have but the headaches and eye strain are still bad.

Dodo bear · 18-03-2015 03:05AM

Hi all

Just following up on messages i had previously written about my corneal grAFt. Its 13 months now since my surgery. I have had my vision checked a couple of times now. At my last appointment i could read the eye test board down to the forth line with out lenses r glasses ðŸ‘. Before if u had your hand up infront of my face. I would not be able to see how many fingers you were holding up. Still only 1 stitch out after all this time. Also if i have a long day r not enough sleep i an get a gritty feeling in my eye on the outer right hand corner. Over all though, so far so good!

irishproduce · 23-03-2015 02:24PM

That is great news Dodo bear, seems like your graft is performing very well! Long may it continue!!

mullerfocus · 27-05-2015 06:28PM

Hi all thought Id join I've got kt 31 years now dx when I was 10 had a cornea graft in my left eye 20 years ago now and have never looked back I wear a lens which I get from Donal o mal ley who I find excellent

Shane732 · 01-06-2015 08:17PM

Dodo bear wrote: »

Hi all

Just following up on messages i had previously written about my corneal grAFt. Its 13 months now since my surgery. I have had my vision checked a couple of times now. At my last appointment i could read the eye test board down to the forth line with out lenses r glasses ðŸ‘. Before if u had your hand up infront of my face. I would not be able to see how many fingers you were holding up. Still only 1 stitch out after all this time. Also if i have a long day r not enough sleep i an get a gritty feeling in my eye on the outer right hand corner. Over all though, so far so good!

That's incredible. I'm 5/6 months post graft now. I have one continuous stitch.

I'm told the stitch is quite tight on the which means the vision isn't brilliant but that the vision should improve significantly once I have the stitch out.

Taltos · 22-06-2015 03:31PM

In for a review tomorrow to see if I can get the cross linkage treatment. Keep your fingers crossed and I'll give an update if I'm eligible.

Taltos · 23-06-2015 09:04PM

So have to call back in 6 mts. Due to my age they don't think it will progress so cross linkage may be off the cards, but will know for definite in 6mts when they compare where I am now to then...

Glad today's over though, hate folk at my eyes.

glineli · 23-06-2015 09:15PM

Taltos wrote: »

So have to call back in 6 mts. Due to my age they don't think it will progress so cross linkage may be off the cards, but will know for definite in 6mts when they compare where I am now to then...

Glad today's over though, hate folk at my eyes.

Where are you going and who are you seeing?

Taltos · 24-06-2015 06:36AM

The Wellington in the Beacon.
Found them to be friendly and helpful. The DVD they sent me before my appointment was very useful, nice to see and hear feedback from patients who had already undergone some of the treatments.

Just using some anti histamine drops until I go back, never realised the damage my constant rubbing was doing. But the Dr there left me in no doubt at the consequences and despite being busy took loads of time to reassure me and take me again through all the options including some newer less risky (infection) treatments.

Shane732 · 24-06-2015 09:55PM

Shane732 wrote: »

That's incredible. I'm 5/6 months post graft now. I have one continuous stitch.

I'm told the stitch is quite tight on the which means the vision isn't brilliant but that the vision should improve significantly once I have the stitch out.

Have noticed in the last week that the vision has improved ever so slightly. I'm in tomorrow morning for a 6 month review.

Red King · 24-08-2015 05:10PM

Have Keratoconus for 15 years now. It is really bad in both eyes. 3 years ago I tore the cornea in my right eye and that was a right bother for 6 months or so. I have been over to London to enquire about surgery and was told at the Centre for Sight clinic that I would be eligible for a partial cornea transplant using the latest techniques. I still don't want to go down that road though and the surgeon there told me that if I can still wear contacts then he see's no reason for me to get surgery just yet.

So I am currently getting fitted with new lenses called Synergeyes Ultrahealth.

Only thing is they cost me 534euro for a pair and Aviva have told me they won't cover a cent of it.

I am so pissed off and depressed right now. I can't afford these contacts as I am still at college and yet I have to get them in order to finish my studies.

Has anyone had any success in claiming cover from any health insurers out there? If so what plan are you on?

I have been paying Aviva 75euro a month for years now and the one time I need help they tell me to go and jump. So angry.

Mr555 · 24-08-2015 06:40PM

(@ Red King)
I am the exact same as you. After 17+ with Keratoconus,i have a scare in both Corena's. Was up in the beacon 2 weeks ago(highly recommend, even though was only my first visit), and they are referring me to another clinic for DALK(partial Corena transplant). That would be covered hopefully under health insure, but must wait for consultation. They recommended CXL for other eye, but first wish to monitor it for six months. I have never come across a health plan that you can claim for contacts. (Think there might be €30 claim allowance for glasses in VHI plan I'm on, but need to investigate further), however you can claim tax back on the lenses every two years, so that is some benefit. Your opticians should be able to advise you on that.

S.M.B. · 25-08-2015 07:07PM

Red King wrote: »

Have Keratoconus for 15 years now. It is really bad in both eyes. 3 years ago I tore the cornea in my right eye and that was a right bother for 6 months or so. I have been over to London to enquire about surgery and was told at the Centre for Sight clinic that I would be eligible for a partial cornea transplant using the latest techniques. I still don't want to go down that road though and the surgeon there told me that if I can still wear contacts then he see's no reason for me to get surgery just yet.

So I am currently getting fitted with new lenses called Synergeyes Ultrahealth.

Only thing is they cost me 534euro for a pair and Aviva have told me they won't cover a cent of it.

I am so pissed off and depressed right now. I can't afford these contacts as I am still at college and yet I have to get them in order to finish my studies.

Has anyone had any success in claiming cover from any health insurers out there? If so what plan are you on?

I have been paying Aviva 75euro a month for years now and the one time I need help they tell me to go and jump. So angry.

Interesting, I had a very different experience at Centre for Sight. Do you mind me asking who your consultation was with.

I am in a similar situation to yourself. 15 years with KC but I have one amblyopic eye with little to no vision so I've been very reluctant to have surgery.

I'm currently going through a really bad patch at the moment as my eye is struggling to cope with a scleral lens I've had for 5 years.

Think I'm going to have to seriously consider surgery if things don't sort themselves out.

S.M.B. · 25-08-2015 07:10PM

Mr555 wrote: »

(@ Red King)
I am the exact same as you. After 17+ with Keratoconus,i have a scare in both Corena's. Was up in the beacon 2 weeks ago(highly recommend, even though was only my first visit), and they are referring me to another clinic for DALK(partial Corena transplant). That would be covered hopefully under health insure, but must wait for consultation. They recommended CXL for other eye, but first wish to monitor it for six months. I have never come across a health plan that you can claim for contacts. (Think there might be €30 claim allowance for glasses in VHI plan I'm on, but need to investigate further), however you can claim tax back on the lenses every two years, so that is some benefit. Your opticians should be able to advise you on that.

Have they started doing DALK procedures in Ireland?

Really thought it was a massive breakthrough within the field but my ophthalmologist just went on a big rant about its potential risks over the weekend which had me second guessing the whole thing.

Red King · 26-08-2015 06:01PM

S.M.B. wrote: »

Interesting, I had a very different experience at Centre for Sight. Do you mind me asking who your consultation was with.

I am in a similar situation to yourself. 15 years with KC but I have one amblyopic eye with little to no vision so I've been very reluctant to have surgery.

I'm currently going through a really bad patch at the moment as my eye is struggling to cope with a scleral lens I've had for 5 years.

Think I'm going to have to seriously consider surgery if things don't sort themselves out.

Sheraz Daya.

Sounds like you are worse than I am though. Sorry to hear that, hope it improves for you.

S.M.B. · 26-08-2015 08:14PM

Very interesting. That's who I saw.

I got the impression that he was a little too eager to operate and questioned his motives.

Your experience seems to paint a different picture.

Cheers for the info!

Red King · 27-08-2015 03:49PM

S.M.B. wrote: »

Very interesting. That's who I saw.

I got the impression that he was a little too eager to operate and questioned his motives.

Your experience seems to paint a different picture.

Cheers for the info!

For what it is worth, I see contact lens specialist Patrick Madden in Egans Opticians Cork. I used to see Peter Crisp there but he retired recently. Patrick Madden has switched me to using Synergeyes Ultrahealth lenses now and though they feel a little "different" my vision with them is fine. I can drive etc.

Without the lenses I would struggle to make out the top letter on the eye chart. My corneas are scarred so badly that anyone who has seen them remark that they are up there with the worst they have seen. Though Sheraz Daya has said he has seen worse

S.M.B. · 27-08-2015 04:33PM

I'm actually based in London for the past 5 years now, partly because I felt Ireland lagged behind in terms of KC support.

I did go back for a second opinion/glimpse at what progress has been made a few years ago and that's how I was referred to Daya.

I was of the belief that nobody in Ireland was doing DALK procedures.

I see they are a form of hybrid lens. It's been well over 10 years since I had to move away from something similar.

Keratoconus

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