Keratoconus

Nicknamed · 07-08-2016 5:06pm

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

Mr555 · 05-10-2016 9:48pm

For anyone new with Keratoconus I highly recommend consultation with Wellington eye clinic, and the earlier the better. Saw Dr. Cummings. €200 we'll spend. They referred me to Dr.Power in Blackrock clinic last year for Dalk as I was too advanced for CXL. Dr.Power choose a full Corena transplant for left eye after reviewing and had procedure done last April. Was off work for a month. Since then been back to Dublin on a monthly basis for follow up in Royal Victoria, as pressure was high until last visit and they wished to monitor closely. Him and his team are very good. On 3 different types of drops several times a day, but the only thing hurting is the prescription costs ðŸ˜‚ And the odd headache! Wearing an eye patch sleeping every night for fear I will rub my eye subconsciously! One of stitches was loose, so they removed that 2 weeks ago. No vision still, but that may improve when remaining stitches are removed in next 6 months. ðŸ‘

Mr555 · 05-10-2016 9:59pm

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. · 05-10-2016 10:06pm

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?

Mr555 · 05-10-2016 10:34pm

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. · 05-10-2016 10:42pm

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.

Mr555 · 05-10-2016 11:01pm

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....!!! ðŸ˜‚ Good luck with your opðŸ‘

S.M.B. · 05-10-2016 11:06pm

Yeah, the worry of rejection and infection must be tough.

I work in front of a PC all day so I feel you.

I'd be interested to hear when that eye gets back up to a level where you could work while the other eye could be operated on.

Dero · 06-10-2016 11:54am

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.

S.M.B. · 06-10-2016 3:00pm

Seems consistent with the general consensus but very concerning for me. It lines up with expectations I had some time ago but on hearing other stories I thought those time frames could be reduced.

Gearoidk · 19-10-2016 8:57pm

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 · 10-11-2016 10:10am

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?

eddiem74 · 12-11-2016 11:42am

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.

mjv2ydratu679c · 25-11-2016 11:12am

Hi all. can anyone recommend an optician in the Sligo/Leitrim/Longford/Roscommon area who has a decent knowledge of treatment of keratoconus? Cant get up and down to dublin as much as I used to so if I could find someone local it'd be a great help

misstearheus · 25-11-2016 11:26am

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

Is Kera progressive in its nature?!

Is there a chance that all sight in the Kera eye / Kera eyes will progress to full loss total blindness completely?!?

Dero · 25-11-2016 12:55pm

misstearheus wrote: »

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

Yes it is progressive, but it generally stabilises by around forty years of age. I don't think it progresses to total sight loss.

Open to correction on the above though.

I was diagnosed about thirty years ago, and it's been steady as she goes for the last decade or so. I had a corneal graft in one eye about five years ago, but it was stable (but crap) before that anyway.

MarcelinaG · 21-08-2017 2:42pm

Where can I get hybrid contact lenses??

MDR · 21-08-2017 9:59pm

Mary Eustace @ Eustace Opticians
Next to the Eye and Ear hospital.

Panthro · 20-09-2017 10:07pm

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?

KevinK · 02-01-2018 3:56pm

Hello

So I was diagnosed with Keratoconus in 2011, I went to Mary Eustace who I found lovely. She recommended hard contact lense but when I wasn't enthused with the idea the said that continuing to just wear glasses would give me adequate vision.

I have been happy with my vision ever since - it's poor enough but doesn't really affect my everyday life and with glasses

I wen to an optician today to get new glasses and she strongly recommend I go and see someone to see if the Keratoconus has progressed? Where do I go from here?

sebphoto · 02-01-2018 4:09pm

Kevin - you should monitor your condition at least once per year.
Standard glasses won't stop the KC progress. Only hard contact lense might help.
I recommend visiting Wellington Eye Clinic in Sandyford. Book appointment with Arthur Cummings.
First consultation costs circa €200, then €150 (if I remember correctly), but they will do all scans for you and prof. Murphy will tell you whether it's possible to apply any laser solution in your case or worse case scenario perform corneal transplant. Good luck!

Arbie · 02-01-2018 5:20pm

sebphoto wrote: »

Kevin - you should monitor your condition at least once per year.
Standard glasses won't stop the KC progress. Only hard contact lense might help.
I recommend visiting Wellington Eye Clinic in Sandyford. Book appointment with prof. Conor Murphy.
First consultation costs circa €200, then €150 (if I remember correctly), but they will do all scans for you and prof. Murphy will tell you whether it's possible to apply any laser solution in your case or worse case scenario perform corneal transplant. Good luck!

Do you mean Arthur Cummings in Wellington?

Conor Murphy is in the Eye & Ear and Northbrook.

sebphoto · 02-01-2018 5:22pm

You are totally correct, mea culpa!

KevinK · 02-01-2018 5:29pm

Thanks very much, Meant to be flying to Australia on the 16th but thinking of postponing this.

My initial diagnosis was with Ranelagh eye clinic - I tried to make an appointment there and eearliest was the 15th.

I will make one with wellington but presume they will need info from ranelagh to see if it has progressed

sebphoto · 02-01-2018 5:35pm

Well each machine might be differently configured and / or not adjusted in the same way, so you might have different results from two different places - that was the case in my case

But anyways ask Ranelagh clinic about your scans and they should send them to you even via email.
If you don't feel that your vision is worse then you don't have to panic. Just keep monitoring it.

KevinK · 02-01-2018 5:48pm

Ya, I really don't feel it is worse but at the same time I am wary of it after the optician today.

I really can't remember exactly what happened at Ranelagh and what happened at Mary Eustace. As Mary is an optician I presume that scans would have been done at Ranelagh rather than with her?

Mary is closed until the 8th so can't contact her until then. I suppose I could find somewhere to go in Australia anyways.

Thanks again for the advice

sebphoto · 02-01-2018 5:57pm

KevinK opticians often have no clue what KC is. Your optician should perform ophthalmoscopy, but without proper scan it's difficult or close to impossible to say in what shape is your corneal.

Dero · 04-01-2018 2:15pm

sebphoto wrote: »

KevinK opticians often have no clue what KC is. Your optician should perform ophthalmoscopy, but without proper scan it's difficult or close to impossible to say in what shape is your corneal.

That may be true of some opticians, but Mary knows exactly what KC is and what it entails for lens fitting. She specialises in fitting lenses for conditions like KC. I was initially referred to her by my own optician as he couldn't get a good fit on my right lens (it needed a graft in the end).

LanceVance · 15-10-2018 6:30pm

Hi,

I was diagnosed with KC last year after being referred to Wellington by an optician. I've never worn glasses or contacts but my vision is poor in one eye so decided to get checked. Turns out I have KC in my left eye and I am due to go back to Arthur in the next few weeks for a second check to gauge the level of degradation (he felt I may have already plateaued given that it's been at this level for many years). I was hoping some people with experience may be able to help with a few questions:
1. If my KC has stopped getting worse, am I more than likely fine to just continue as I have been all these years?
2. If CXL is necessary (seems probable), how much does this cost and is it generally covered by Health Insurance?
3. If I get CXL can I expect improvement is sight or just to stop it in its tracks?
4. I have been unable to find a prescription that works for me (due to KC), would CXL allow me to wear glasses like any other short sighted person?

Really appreciate any help on the above.

Thanks

tashiusclay · 29-10-2018 1:15am

LanceVance wrote: »

Hi,

I was diagnosed with KC last year after being referred to Wellington by an optician. I've never worn glasses or contacts but my vision is poor in one eye so decided to get checked. Turns out I have KC in my left eye and I am due to go back to Arthur in the next few weeks for a second check to gauge the level of degradation (he felt I may have already plateaued given that it's been at this level for many years). I was hoping some people with experience may be able to help with a few questions:
1. If my KC has stopped getting worse, am I more than likely fine to just continue as I have been all these years?
2. If CXL is necessary (seems probable), how much does this cost and is it generally covered by Health Insurance?
3. If I get CXL can I expect improvement is sight or just to stop it in its tracks?
4. I have been unable to find a prescription that works for me (due to KC), would CXL allow me to wear glasses like any other short sighted person?

Really appreciate any help on the above.

Thanks

1.You could take a chance on not getting CXL and hopefully your cornea won't thin any further. That's up to you essentially.

2. The Wellington will give you the exact price, I think about 1500e per eye.

3. Its just to stop it in its tracks.

4.No. Glasses will be a distant memory for you with this disease...!

I've had cxl, intacs, 14mm mini scleral and 17mm scleral contact lenses. It's a pain in the arse of a disease, but if you can catch it as early as possible, management of it becomes a lot easier. Good luck.

Panthro · 29-10-2018 11:04pm

I've KC in both eyes. Right worse than the left. Got CXL done in the right eye. Can't say I see a difference visually. It halts the progress more so than undoes the damage if that makes sense.

Got that done on the medical card. Took best part of a year wait iirc.
While waiting, I also had topographical images taken of my eye privately so when the time came for the procedure they could look at the images I'd got taken from a year or so ago and compare to what my eyes were like.

Didn't go through with the procedure for the left eye. Condition hadnt gotten worse so I left it.

Wearing Gas Permeable Contact lenses. Took a bit of getting uses too (expensive to replace too!)

Glasses are useless to me. A good pair of contacts and you'll be amazed.

LanceVance · 30-10-2018 5:51pm

Thanks both, very helpful

Gearoidk · 14-01-2019 11:04pm

Hi

I’m looking for advice on peoples experience. I have had surgery for PRK and cross linking in the previous 18 months. Following on from these 2 operations and a considerable amount of money later I am still not happy with the level of vision from these 2 surgeries and now the suggested option is to try the scleral or hybrid lenses, an option that I’d have rather avoided based on previous use of the RGP Lenses. Have people had experience of where the 2 surgeries didn’t enhance the level of vision and how you coped with it. Also does any one have experience of going through the above and going for a second opinion?

05-02-2019 4:15pm

Gearoidk wrote: »

Hi

I’m looking for advice on peoples experience. I have had surgery for PRK and cross linking in the previous 18 months. Following on from these 2 operations and a considerable amount of money later I am still not happy with the level of vision from these 2 surgeries and now the suggested option is to try the scleral or hybrid lenses, an option that I’d have rather avoided based on previous use of the RGP Lenses. Have people had experience of where the 2 surgeries didn’t enhance the level of vision and how you coped with it. Also does any one have experience of going through the above and going for a second opinion?

you mention its been suggested to go for the hybrid.
i've been using the SynergEyes Hybrid lens for years. (1 eye only, toric in other eye).
As long as you look after them they'll last ages.
initially i tried the "piggy back" route where putting a rgp one on top of the normal lens, but the rgp would randomly out due to big bug eye syndrome :eek:
it was a revelation getting the hybrid.
condition wasn't serious enough to go for op, but if it was suggested i'm not sure if id have had the nerve to do it to be honest.
and the hybrid is non invasive if thats the right word.

S.M.B. · 05-02-2019 6:40pm

I didn't think CXL had any major enhancing capabilities and it was only a method of ensuring KC doesn't progress any further. Maybe combined with the laser surgery an improvement would be expected.

I worse a full size scleral for 10 years before i started having some tolerance issues. Best lens I've ever had.

Keratoconus

Comments