Keratoconus

I recently got Intac's fitted to my previously cross linked keratoconus eye, if any one has any questions about how this went and the recovery period (currently about 6 weeks since I got it done) feel free to ask away.

tashiusclay wrote: »

I recently got Intac's fitted to my previously cross linked keratoconus eye, if any one has any questions about how this went and the recovery period (currently about 6 weeks since I got it done) feel free to ask away.

Well how are intacs, considered them recently as sceleral lens is annoying me ,2days in 2days out😩

That is good news Dodo.
The first step is getting a positive result and no rejection issues.

I've mine 10 years now.
Vision never got better even after attempted second surgery to release some pressure on cornea in 2012 but look, I can wear a lense with the eye now (although I don't)

Family member just got diagnosed with this. Am a bit heartbroken for them. One eye is too far gone, - could say they're blind in that eye, the other eye is really bad and not sure if anything can be done for it, but they are hoping to go ahead with a Cornea Transplant. Don't know what to think about the whole transplant thing! No experience in dealing in anything like that. Not a great topic of conversation is having anything to do with a transplant! It's talking about death in some way shape or form isn't it, whether it may be as a Recipient or a Donor! A lot to be mulled over!! How does one accept or deal with or cope with anything got to do with the whole process of Donor-ship/transplanting?!? Be it a cornea or a kidney or whatever....

It has me immersed in floods of tears thinking about it all. They're under 40 and it's very sad and difficult to think they'll be missing out on so much and they'll never have decent sight again!

There seems to be quite a lot out there with this condition, didn't realize that many had it. Don't really know what to do or how to help in a tactful yet useful way! They are actually bumping into things around the room it's that bad!! This is only just the beginning like, a nasty intro of the road ahead... There could be walking-canes or whatever, who knows what, involved at some stage.... A horrendous thing to have to adapt to to go from a healthy fit active hyper youngster to.... this..... It's a pretty seriously adaptive thing to have to get used to.....

Ye all seem to be coping superbly and barely complaining at all! I don't know whether it's that ye're playing it down a bit or if it's just that ye're not complainers...! But ye'all sound so brilliant fair play to ye! I know there's probably worse things that can happen and at the minute in my own mind I'm probably being a bit over-dramatic but it's still serious enough in a way too though..... But ye sound brilliant coping with it! Perhaps ye are downplaying or perhaps I'm just thinking the absolute worst of it.... I can't even begin to imagine how much of a nightmare getting around every day with this must be, but ye sound like ye're coping so well and not making a big deal out it! and getting on with things as best ye can. What a triumph. Walking/getting around and daily tasks must be such a struggle like....

I would love to know more about it.... Where can I find out more.... How bad does it get.... Does it get to a stage where ya can't make people out.. where even humans are just a blur-spot/spot/shape/blur.... Where can I find out how bad it can get....

misstearheus wrote: »

I would love to know more about it.... Where can I find out more.... How bad does it get.... Does it get to a stage where ya can't make people out.. where even humans are just a blur-spot/spot/shape/blur.... Where can I find out how bad it can get....

Check this

http://www.nkcf.org

Good luck

misstearheus wrote: »

Family member just got diagnosed with this. Am a bit heartbroken for them. One eye is too far gone, - could say they're blind in that eye, the other eye is really bad and not sure if anything can be done for it, but they are hoping to go ahead with a Cornea Transplant. Don't know what to think about the whole transplant thing! No experience in dealing in anything like that. Not a great topic of conversation is having anything to do with a transplant! It's talking about death in some way shape or form isn't it, whether it may be as a Recipient or a Donor! A lot to be mulled over!! How does one accept or deal with or cope with anything got to do with the whole process of Donor-ship/transplanting?!? Be it a cornea or a kidney or whatever....

It has me immersed in floods of tears thinking about it all. They're under 40 and it's very sad and difficult to think they'll be missing out on so much and they'll never have decent sight again!

There seems to be quite a lot out there with this condition, didn't realize that many had it. Don't really know what to do or how to help in a tactful yet useful way! They are actually bumping into things around the room it's that bad!! This is only just the beginning like, a nasty intro of the road ahead... There could be walking-canes or whatever, who knows what, involved at some stage.... A horrendous thing to have to adapt to to go from a healthy fit active hyper youngster to.... this..... It's a pretty seriously adaptive thing to have to get used to.....

Ye all seem to be coping superbly and barely complaining at all! I don't know whether it's that ye're playing it down a bit or if it's just that ye're not complainers...! But ye'all sound so brilliant fair play to ye! I know there's probably worse things that can happen and at the minute in my own mind I'm probably being a bit over-dramatic but it's still serious enough in a way too though..... But ye sound brilliant coping with it! Perhaps ye are downplaying or perhaps I'm just thinking the absolute worst of it.... I can't even begin to imagine how much of a nightmare getting around every day with this must be, but ye sound like ye're coping so well and not making a big deal out it! and getting on with things as best ye can. What a triumph. Walking/getting around and daily tasks must be such a struggle like....

I would love to know more about it.... Where can I find out more.... How bad does it get.... Does it get to a stage where ya can't make people out.. where even humans are just a blur-spot/spot/shape/blur.... Where can I find out how bad it can get....

The Wellington Eye clinic post out a DVD on Keratoconus and procedures. It was the first time my family understood it after the watched it! They may also have video posted on website. I have had this nearly 20 years and you get used to contacts. I just have had Corena transplant and although I have no vision in that eye yet, might be able to fit a contact back in that eye in next 12 months. Other than that, there are always advances, and I read recently that testing is going on for stem grown Corena's, so give it 5-10 years and there could be a lot more advancements/treatments ðŸ‘

S.M.B. wrote: »

No vision after 3 months and potential to fit a lens after 12? Is that in line with your expectations pre operation?

What's your vision like in the other eye?

It's 5 months now, and vision poor, but I was informed that won't tell properly until all stitches are removed(usually 12-18 months). I was informed that whatever (if any) vision I get, will more than likely still require a contact lenses to correct. The fitting of contact will be a few months/years down the line, but I'm taking it 1 review at a time. Everyone will have different story. My right eye, with corrective lense bring me above legal driving requirement.

S.M.B. wrote: »

I understand everyone has a different story and you seem satisfied with your progress which is great.

I just get very concerned when I read numbers like yours. I'm not far away from the operating table but I don't have the luxury of a strong second eye to fall back on. I basically have no site in my weak eye.

I hear such vast differences in recovery periods so am finding it really difficult to come up with realistic figures for my scenario.

I was really worried that wouldn't be allowed drive, as have no public transport to get to work in my area. I also work on a computer 8-10 hours a day. I choose to get worst eye done first(he gave me option, as both bad without lenses). I'm much more worried about infection/rejection at this stage, and will worry about vision down the road. No lies, I was bricking it the morning of the op! And felt it was 3 long weeks of recovery initially at home. Really needed help cleaning around eye, putting in drops, bandaging eye first few days as it was very sore but worst of all was the boredom....!!! 😂 Good luck with your opðŸ‘

S.M.B. wrote: »

No vision after 3 months and potential to fit a lens after 12? Is that in line with your expectations pre operation?

What's your vision like in the other eye?

I had mine done about five years ago (different hospital/surgeon). I had no vision for quite a long time afterwards, and spent a year operating on one eye while the graft healed. I was fitted for a lens after 12 months and it's been great ever since.

I think I only have one stitch left now, and vision is very good with the lens. With no lens, it's not quite useable, but it's way better than before the operation. The lens is still not 100% stable (I have to take it out for things like football/cycling because it it would just fall out anyway). However, that's as much a feature of my own corneal distortion as the graft.

Hi. Posted on this thread a few years ago now. I went to the wellington about 8 months back for a consultation and am due back again in the next few weeks. At the time I was prescribed opatanol so I wouldnt rub my eyes. I work on a PC screen all day and in an office with aircon. Some days I feel that the opatanol eye drops arent enough as my eyes feel extremely dry. Do any of ye know any other drops that can be used with the existing ones?

Panthro wrote: »

Hi all
Well my eye sight has been on the slippery slope for the past few years. Found out at the beginning of the year I've keratoconus, been wearing the hard lenses since. Some days theyre fine then others I've to take them out after only a few hours.
Met with Dr Fahy in UCHG, he's said I'll need CXL done.
Is CXL going to have any reversal effects or is it purely a stop the progression procedure?

I was not at the point of lenses but my vision was poor in my right eye. I had SimLC performed along with CXL by Dr. Cummings at the Wellington Eye Clinic.

http://www.wellingtoneyeclinic.ie/other-procedures/keratoconus.php

I also had a follow-up laser correction a couple of years later.

In my case progression has stopped and vision has been improved.

CXL is to stop progression per my understanding however I opted for laser also to try and improve vision.

Spoilered for tact and sensitivity's sake but I just had to ask.

Where can I get hybrid contact lenses??

Hi all I'll be getting the cxl done in UCHG next week via the medical card.
Does anyone know if it's one or both eyes they do for it? Both mine are goosed, one worse than the other. I'm starting a new job in the UK so I need to give them notice for time off (anyone know how long before I'll be fit to drive / sit in front of a computer after the procedure?) Also how long before I can wear the hard lenses again?