Keratoconus

Mr555 · 18-08-2011 9:36pm

Degall wrote: »

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).

Hi,

We all probably have our own method, but this is mine:
I find the easiest way to fit the lense, is
1. put the lens on clean index finger,
2.then lift lens off index finger with other hand,
3. dry index finger off by rubbing it off clean skin on other hand (do not dry index finger with cloth or towel, as it will pick up dust particles).
4Replace the lens back on index finger (back of lense will be dry).
5.Place drop of fresh solution into lens while it's on finger
6.look down and place lense into eye

(since back of lense is dry, it won't stick to finger. The drop of fresh solution makes it cooler,soothing the eye,and easier to stay in the eye.

Advise (always have spare solution in contact case, as he may need to take them out if tired. Keep bottle of solution in car, gear bag etc) maybe get bottle of natural tears to refresh eyes if they're feeling dry.
There are new hybrid lenses, which have softer edges,and are easier to tolerate, but are more expensive.
Also if it is just diagnosed, I would make an appointment with Wellington clinic, or request brochure. They have cross link procedures to stop the deterioration and intacts. I was diagnosed at 18. I am now 30 and without lenses I can't see a foot in front of me.mine has deteriorated too much for any treatment, but not bad enough for a cornea transplant. I work on computers all day, and suffer from clouding of the lenses,(lense sort of fogs up/drys up) so have to take them out every few hours. It's also a pain in sunlight(pair of sunglasses will cure) , and lights on cars at night are very dazzling.
I do swim with mine in swimming pool, but beech is a pain with seasalt and sand.
Clean lenses regularly!!!! If eyes feel constantly tired and sticky get a bottle of optrex and rinse eyes, and try to leave contacts out as long as possible.

Don't know if health insurance covers Wellington clinic, but if it does, he would need to have had health insurance prior to diagnosis, as if he only takes insurance out now, he'd have to wait 5 yrs for cover as it is a pre condition.Consultation there costs €100 I think.

I deal with Dr.Crisp in Egans in Cork. Very nice and Egans have replacement scheme.(pay around €45 yearly subscription, and you get free check ups,and replacement lenses at discount price)

Hope this helps.
Martin

Degall · 19-08-2011 7:48am

Hi Mr 555,
Many thanks for the advice on fitting lenses, certainly some good tips that he is not currently using. He has had CXL on his right eye, left eye unfortunately too far gone by the time it was caught. He is under Paul O'Brien in the RVEEH and Dixon Hempenstall. Will check on "Replacement Scheme" with Dixon. Best wishes for the future.:)

S.M.B. · 04-09-2011 1:19am

Never knew this thread existed!

I was diagnosed with KC 12 years ago but am finally hitting the stage where a corneal transplant is on the cards.

I had my fair share of specialists in Ireland but never found anybody I had 100% faith in.

About 6 years ago I went over to London for some alternative viewpoints on my situation and found lots of good advice/help.

I ended up moving to London not so long ago so it's even more convenient now.

I recently went back to Ireland for a further opinion but once again was not impressed with the results. I've probably just been unlucky with who I've dealt with.

irishproduce · 04-09-2011 2:18pm

S.M.B. wrote: »

Never knew this thread existed!

I was diagnosed with KC 12 years ago but am finally hitting the stage where a corneal transplant is on the cards.

I had my fair share of specialists in Ireland but never found anybody I had 100% faith in.

About 6 years ago I went over to London for some alternative viewpoints on my situation and found lots of good advice/help.

I ended up moving to London not so long ago so it's even more convenient now.

I recently went back to Ireland for a further opinion but once again was not impressed with the results. I've probably just been unlucky with who I've dealt with.

Hi SMB,

Is it both eyes or just the one?
I had a graft in my right eye about 6 years ago. I was in my early 20s.

I didn't bother with lenses or other treatments, I was diagnosed and just went straight for the surgery, no messing around with other treatments.

Anyway, I have someone else's cornea for the last few years now and the vision never really improved but the grafted cornea is a bit better shaped so lenses can be sat on to it. Two lenses mind you. A soft one with a hard one sitting on it. Can't play hurling with it so would you believe that the vision in my other eye is such that I don't even bother buying/ using lenses in the right eye. Waste of time because I am fine surviving with just the one.

I recently however started to develop it in my left eye and am using soft lenses there for hurling. It can be extremely difficult to get the lense on, I am really frustrated some days as I am literally sticking my finger against my eye ball but the lense just wont go on! Heartbreaking some days.

Anyway, If I can answer any questions about the surgery, let me know, I have been through the lot including the years of dry eyes, itchy eyes and stitches breaking long after the surgery. Mine was done in Limerick.

I have a question of my own if anyone could try to answer it, I posted it in another forum but no answer:

I have my trial box of lenses almost finished now.
Been using Dailies for astigmatism when playing hurling.

However, I am about to go down the road of buying them now but does anyone know if the standard 1 Day Acuvue will do the same job as the 1 Day Acuvue for Astigmatism??

What is the difference??

Thanks for any advice.

irish

S.M.B. · 04-09-2011 11:03pm

I've had an amplyopic eye since I was born so I was always reliant on just the one eye. Then when I hit 17 I got diagnosed with Kerataconus. Of course it was my "good" eye that got the more severe form of KC. DISASTER!

Went from an RGP to a hybrid lens when the RGPs got too uncomfortable. That got me through about 4 years. I then looked into a transplant but given my reliance on the one eye it's quite a risk. I then started wearing a scleral lens which has being going ok for a good 5 years. With each new type of lens and new fitting my sight takes quite a dip in quality. I'm at a stage where I don't think I can take a further dip so the next time I have any serious issue with this lens I'll be making my way to the operating table. Risk or no risk I feel it's coming to a stage where it has to be done.

Got an appointment with a top surgeon in London at the end of the month so I'll be very interested to hear what he suggests.

Sorry, can't help with your question. Never had any experience with daily disposables.

irishproduce · 05-09-2011 11:41pm

God, does anyone here have extreme sensitivity to light?
As in looking at the computer is hard like??
I was at a match there the other night and I'm not joking, it was as painful. I couldn't play like, had to sit the match out!!

I was also in Bordeaux recently at the Irish match and I walked to a wine shop with my friend and forgot to take sun glasses and i swear to God, I had to squint my eyes and look at the floor the whole way to the shop. I couldn't look up, genuinely, it was so painful!!

I suspect the source of the problem for the most part is the operated on eye but the left one isn't free from sensitivity either.

I'm wondering if the stitches are causing all of this. There are still a few in there after all this time.

I have an appointment with Ms Cleary in regional Limerick in Oct and I'm gonna beg her to help me with this sensitivity! I am going insane from it!

Rant over :-)
Thanks

MarcusFenix · 12-09-2011 5:21pm

Hi guys,

I was recently diagnosed with KC.

After 2 or three eye tests with specsavers resulting in no change of perscription and "healthy eyes" I needed perscription safety oggles for work in intel leixlip, so they wanted me to go to an optician they use, in Cellbridge, Porter I think?? Anyway she was great and was very sure I had KC and was really surprised specsavers hadn't seen it (i noticed it around 3 years ago).

So she wanted me to go to the eye nose and throat or whatever it's called, the queen victoria I think (i'm a cork boy so sorry for the completely vague info). Anyway I went there and I was to see prof. Murphy, he was on lunch so I saw his colleague, didn't get a name, and he said yes it was KC and that I might need to have crosslinking done but he was going to try contacts first.

He then said to hang on for second opinion from prof. Murphy and I did, when prof Murphy saw me he said he would definitely get the crosslinking done and he wouldn't bother with lenses until after.

Does this sound familiar to anyone else? I am booked in on friday 13th :eek: of january to have this done but I wonder should I get a second opinion first and off who? Someone in Cork would be best for me.

irishproduce · 12-09-2011 10:47pm

MarcusFenix wrote: »

Hi guys,

I was recently diagnosed with KC.

After 2 or three eye tests with specsavers resulting in no change of perscription and "healthy eyes" I needed perscription safety oggles for work in intel leixlip, so they wanted me to go to an optician they use, in Cellbridge, Porter I think?? Anyway she was great and was very sure I had KC and was really surprised specsavers hadn't seen it (i noticed it around 3 years ago).

So she wanted me to go to the eye nose and throat or whatever it's called, the queen victoria I think (i'm a cork boy so sorry for the completely vague info). Anyway I went there and I was to see prof. Murphy, he was on lunch so I saw his colleague, didn't get a name, and he said yes it was KC and that I might need to have crosslinking done but he was going to try contacts first.

He then said to hang on for second opinion from prof. Murphy and I did, when prof Murphy saw me he said he would definitely get the crosslinking done and he wouldn't bother with lenses until after.

Does this sound familiar to anyone else? I am booked in on friday 13th :eek: of january to have this done but I wonder should I get a second opinion first and off who? Someone in Cork would be best for me.

Hi Marcus,

Last week, another stitch broke in my eye from the graft surgery years ago.
While in to get the stitch out, there was a new doctor on duty.
He was looking at my "good" eye. I told him that Donal O'Malley in Dublin said to look at option of crosslinking in next year if it gets worse.
The new doc told me to avoid it for as long as possible. Not because there is anything wrong with it but because it is still relatively new technology and long term, its best to wait and see how it pans out over another few years.

I haven't come to the stage fully yet where I have to consider it, but I am seeing the cornea specialist in Limerick in Oct and my own consultant, Philip O'Reilly has said to ask her about it and see what she says.

I haven't researched it fully yet but I know there are people here who had it done so wait to see what comes up here too.

irish

eddiem74 · 13-09-2011 9:30am

MarcusFenix wrote: »

Hi guys,

I was recently diagnosed with KC.

After 2 or three eye tests with specsavers resulting in no change of perscription and "healthy eyes" I needed perscription safety oggles for work in intel leixlip, so they wanted me to go to an optician they use, in Cellbridge, Porter I think?? Anyway she was great and was very sure I had KC and was really surprised specsavers hadn't seen it (i noticed it around 3 years ago).

So she wanted me to go to the eye nose and throat or whatever it's called, the queen victoria I think (i'm a cork boy so sorry for the completely vague info). Anyway I went there and I was to see prof. Murphy, he was on lunch so I saw his colleague, didn't get a name, and he said yes it was KC and that I might need to have crosslinking done but he was going to try contacts first.

He then said to hang on for second opinion from prof. Murphy and I did, when prof Murphy saw me he said he would definitely get the crosslinking done and he wouldn't bother with lenses until after.

Does this sound familiar to anyone else? I am booked in on friday 13th :eek: of january to have this done but I wonder should I get a second opinion first and off who? Someone in Cork would be best for me.

You can read the prior page of this thread for some of my earlier posts. I am going to be have the SimLC procedure performed at the end of next week. I have KC in both eyes, right eye is worse as is vision in that eye. Never had glasses or anything else, so opted to slow/stop progression with CXL and then take a chance on laser in conjunction to try and improve vision.

It doesn't hurt to assess options, if you have KC the key thing is to estabish is it progressing or not, and then go from there. You probably also want to ensure your insurance company covers CXL as not all do last I heard.

glineli · 19-09-2011 3:50pm

eddiem74 wrote: »

You can read the prior page of this thread for some of my earlier posts. I am going to be have the SimLC procedure performed at the end of next week. I have KC in both eyes, right eye is worse as is vision in that eye. Never had glasses or anything else, so opted to slow/stop progression with CXL and then take a chance on laser in conjunction to try and improve vision.

It doesn't hurt to assess options, if you have KC the key thing is to estabish is it progressing or not, and then go from there. You probably also want to ensure your insurance company covers CXL as not all do last I heard.

Best if luck with it. Let us know how you get on. Thats my plan.

As far as insurance, VHI dont cover CXL yet and last time i contacted them, a few months ago, they said they had no plans to cover it in the medium term

irishproduce · 19-09-2011 8:45pm

glineli wrote: »

Best if luck with it. Let us know how you get on. Thats my plan.

As far as insurance, VHI dont cover CXL yet and last time i contacted them, a few months ago, they said they had no plans to cover it in the medium term

If VHI won't cover CXL, then I will have to be moving to someone who does.
I am with VHI a long time now.

S.M.B. · 19-09-2011 9:08pm

Would there not be issues with moving?

I'm looking into health insurance coverage for a full private corneal transplant and I'm out of my depth. Could never make any sense of what's covered and what's not.

Does anyone know a good source of information for getting my head around this. I just read my policy there but I'm none the wiser.

eddiem74 · 20-09-2011 9:37am

glineli wrote: »

Best if luck with it. Let us know how you get on. Thats my plan.

Will do, current plan is:

Friday
- Arrive 13.00 for prep/scans/etc
- 14.00 surgery
- 15.30 go home

Saturday
- back for post-op review/check-up

Wednesday
- back for post-op review/check-up

irishproduce wrote: »

If VHI won't cover CXL, then I will have to be moving to someone who does.
I am with VHI a long time now.

Yes I don't believe they do. You can always call them and check using the CXL procedure code 2801. I was lucky in that my company changed our group insurance from VHI to Aviva this year so I lucked out. Aviva cover CXL on a pre-approval basis so your doctor has to present the case to them on your behalf.

S.M.B. wrote: »

Would there not be issues with moving?

I'm looking into health insurance coverage for a full private corneal transplant and I'm out of my depth. Could never make any sense of what's covered and what's not.

Does anyone know a good source of information for getting my head around this. I just read my policy there but I'm none the wiser.

I think the only thing you would need to consider when moving is ensuring you get a similiar level of cover or better as your current policy and to establish if there are any restrictions as a result of switching i.e. is anything not covered or excluded for a certain period of time ? With a pre-existing condition this will most likely be the case. The HIA website can help with policy/level of cover comparisons.

If you need clarification on your current policy just call up your insurance provider and ask. They are usually helpful and will either let you know or tell you what information they need. Alternatively your eye doctor or their secretary might be able to let you know what is usually covered or not and by what insurance companies.

Gearoidk · 01-10-2011 1:04am

Hey
I was diagnosed with keratoconus a few years ago. I went to see a specialist and was given a set of rgp lenses which i never got used to and were just left sitting at the bottom of a drawer. A few weeks back i went for an eye test again and i have to be forwarded onto another specialist for treatment. At the time i could not get used to the lenses, i was also not happy with the service i received from the consultant, he had absolutely no patience with me trying to get used to putting the lenses in and out this was one of the reasons that i gave up on them 2 years ago... Now im going to go to someone different and try again as i know my eye sight had gotten a small bit worse and glasses arent perfecting it. Does anyone know of anyone in the Clare/Limerick or Galway area that deals with it and if it will be covered by medical card as im a student and money is tight as ye all well know.

irishproduce · 02-10-2011 12:33am

Hi Gearoid,

It is covered on medical card.
Ms Cleary and Mr O'Reilly are cornea/ eye specialists in Limerick regional.
When I was a student, I had the cornea graft done on medical card.
I am VHI now but no difference in treatment, see the same people etc.

irish

S.M.B. · 02-10-2011 7:49pm

After 12 years of deferring any form of surgery it's looking like a first graft is on the cards.

CXL2011 · 07-10-2011 5:43pm

Hey all,

This FB page has been set up to help Keratoconus sufferers. Videos and information on treatment are still to come. Anyone can tell their story or give advice on how to deal with it.

Check it out:

http://www.facebook.com/pages/Keratoconus-Ireland/229959307058459?ref=ts&sk=wall#!/pages/Keratoconus-Ireland/229959307058459?sk=wall

IBren · 08-10-2011 8:45am

Hey CXL, thats a cool idea. I had a check there of the page, it is good to have some sort of a support group. I have keratoconus but not sure what my options are.:eek:

Shane732 · 12-10-2011 11:45am

Well I've taken the plunge and made an appointment with the Wellington Eye Clinic.

My lens are causing me a fair amount of hassle at the moment so I might as well see what my options are.

eddiem74 · 13-10-2011 8:22am

Shane732 wrote: »

Well I've taken the plunge and made an appointment with the Wellington Eye Clinic.

My lens are causing me a fair amount of hassle at the moment so I might as well see what my options are.

That's great let us know how you get on.

Shane732 · 17-10-2011 11:36pm

Ok so I went to see Arthur Cummings in the Wellington Eye Clinic. Firstly I must say that Mr. Cummings was excellent - very informative and straight about the various options etc...

In relation to my own eyes, it's pretty much as I'd been told by the optician I'm under in Dixon Hempenstall.

My left eye is far too progressed to consider CXL and be confident that it would work. The steepest part in my left eye being just under 90D (CXL is recommended up to 58D)! He was very surprised that the optician I use was able to get a lens to sit comfortably in my eye. The only option in my left eye is Keraflex. I think Mr. Cummings is the only person to have done keraflex in Ireland to date and there's only been about 12 patients so far. Procedure was first done in October 2010.

In relation to my right eye the prognoses isn't quite so bad. I'm a good candidate for SimLC in my right eye. So it looks like I'll run with the SimLC as a starting point in my right eye.

He talked about whether I'm happy stopping the progression in my right eye. Of course the answer is yes, but realistically I'd like to improve the vision and potentially get away from a lens in my right eye (or at least to soft lens). We discussed the possibility of doing laser on the right eye subsequent to doing SimLC - this would potentially get me away from having to wear a lens in my right eye. It's something I'm very interested in. Having said that my optician shudders at the thought of doing laser on an eye that's had SimLC done. Anyway the decision on laser is a long way down the road.

Has anyone had the SimLC procedure? How do you find it?

Finally, what I would say is to make sure you're with a good optician. I picked Dixon Hempenstall by complete chance when just going for a regular eye test for a provisional licence and couldn't recommend them highly enough. I don't attend Donal in DH by choice as the optician I'm under is excellent. Even Mr. Cummings at to take his hat off to the fact that she'd be able to go a lens to fit. Unfortunately at present my left eye is very irritated so she gets the pleasure of sorting that problem out so I can get back to wearing a lens comfortably in my left eye!

I'll probably have SimLC done in late November.

eddiem74 · 18-10-2011 9:15am

Shane732 wrote: »

Has anyone had the SimLC procedure? How do you find it?

I had SimLC at the end of September. I was diagnosed with KC a few months back, never wore contacts or glasses. It was worse in my right eye but I have it in both. Vision is also worse in my right eye so I opted for SimLC to see if it can improve things.

After the procedure which was on a Friday I had a check-up on the following Wednesday and Dr. Cummings said he could already see around a 75% improvement in the centre and 50% elsewhere so that seems to have gone well. I am back at the start of November for another follow-up including scans this time, so I will be discussing my vision in detail at this time. The goal was first to tackle KC and see what I could do to improve my vision, at the moment my vision has not changed considerably post-OP but I was told it could take months to settle down. Dr. Cummings also told me he may consider some futher laser fine-tuning at around the 6 months mark so that all needs to be discussed more.

Just FYI, in terms of the SimLC procedure it was pretty much painless, the thought is always worse. I was in there for around 2.5hrs (Prep 1hr, Op 1hr, rest/recovery 30mins) and then home after that.

Best of luck !

Shane732 · 18-10-2011 1:29pm

eddiem74 wrote: »

I had SimLC at the end of September. I was diagnosed with KC a few months back, never wore contacts or glasses. It was worse in my right eye but I have it in both. Vision is also worse in my right eye so I opted for SimLC to see if it can improve things.

After the procedure which was on a Friday I had a check-up on the following Wednesday and Dr. Cummings said he could already see around a 75% improvement in the centre and 50% elsewhere so that seems to have gone well. I am back at the start of November for another follow-up including scans this time, so I will be discussing my vision in detail at this time. The goal was first to tackle KC and see what I could do to improve my vision, at the moment my vision has not changed considerably post-OP but I was told it could take months to settle down. Dr. Cummings also told me he may consider some futher laser fine-tuning at around the 6 months mark so that all needs to be discussed more.

Just FYI, in terms of the SimLC procedure it was pretty much painless, the thought is always worse. I was in there for around 2.5hrs (Prep 1hr, Op 1hr, rest/recovery 30mins) and then home after that.

Best of luck !

Thanks for this.

How long were you off work afterwards?

eddiem74 · 19-10-2011 8:18am

Shane732 wrote: »

How long were you off work afterwards?

I had the Op on a Friday afternoon from 13.00 to 15.30 so took that day off work. They told me I could return to work the following Thursday after my Wednesday follow-up appointment but I took the whole week and went back on the following Monday. So I was off for 6 days including Op.

I had a choice of a Wednesday or Friday Op appointment so I picked a Friday as more family would be available in case some assistance was needed over the coming days.

Best of Luck.

Darragh11 · 11-11-2011 1:18pm

helllo every1 i recently had a crxl done in wellington eye clinic, i am waiting to get my other eye done, i am 24 and have had kr since i was 18 and was just told by my local optician that i have a condition and was told i needed glasses, i was never told about cxl and my kr is too bad for laser, i will have to wear hard contact lenses for the rest of my life but have no problems with them so far, only wearing them 2 months, i had cxl done in wellington eye clinic and they have been brilliant to me finally providing me with info and solutions, i was wondering and researching about intacs so i wouldnt have to wear contacts, wellington dont think they would be a great idea, i was wondering if any1 has had them fitted and how they are with them?

many thanks Darragh

Lolo55 · 02-12-2011 12:04am

MY SON HAS JUST BEEN DIAGNOSED WITH KC and visited Mr. Billy Power in Blackrock last week. Due to operate mid January. Bit worried as all the boards seem to concentrate on Wellington Clinic. He was referred to Blackrock by opthomologist in Galway. Should we look into Wellington?

eddiem74 · 02-12-2011 9:10am

Lolo55 wrote: »

MY SON HAS JUST BEEN DIAGNOSED WITH KC and visited Mr. Billy Power in Blackrock last week. Due to operate mid January. Bit worried as all the boards seem to concentrate on Wellington Clinic. He was referred to Blackrock by opthomologist in Galway. Should we look into Wellington?

I can't comment on elsewhere so it really depends on how happy you were with the service you got from Blackrock. I had appointment there myself originally but decided to change to the Wellington and have no complaints. An initial consultation cost around €100 at the Wellington, so something you could consider as a second opinion to ease your mind if you wanted.

I believe (I could be corrected?) Dr. Cummings and his team at the Wellington are leaders in this area and do a lot of research, give talks abroad, etc... around KC. I am sure other doctors do also, I just have no experience or information on that.

Darragh11 · 02-12-2011 11:06am

I live in galway and the way i found out about wellington and cross linking was over the internet, My optician never referred me and didnt tell me about cross linking as he didnt know much about it, There isnt enough awareness and info out there about keratoconus. Wellington are very well established and dr cummings worked with the inventor of the cross linking procedure, i dont know much about blackrock either but cannot fault wellington at all they have been fantastic as soon as i walked through their door. They were also the first in ireland to begin laser eye treatment.

Lolo55 · 02-12-2011 3:30pm

Thank you Eddie and Darragh. New to Boards so hope ye get this message. Will keep the forum informed.

irishproduce · 13-12-2011 12:57am

Looks like CXL for me in January as it has progressed slightly in my good left eye.
Consultant said CXL should halt it.
I asked her would it be safe to say best case scenario, the vision imporves and worst case scenario that it doesn't worsen vision but doesn't improve it and she agreed that was a fair way to look at it.
I was just concerned that if I was unlucky, the vision would get worse which would leave me rightly snookered as i'd be in a bad situation then!

Will post back and let you know what happens.

Oh, by the way, I mentioned earlier that if VHi wouldn't cover it, I would be moving to Aviva, looks like I am doing that too. Spoke to an Aviva rep today and she said she would speak to medical consultant at their side to explain my case so I wouldn't lose cover and wouldn't have to wait.
Fingers crossed.

Keratoconus

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