Keratoconus

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

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