Keratoconus

eddiem74

irishproduce wrote: »

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.

Best of luck !!

So is your vision still good in your left eye? I only ask as perhaps SimLC might be another option to tackle vision improvement and KC in one go?

irishproduce

eddiem74 wrote: »

Best of luck !!

So is your vision still good in your left eye? I only ask as perhaps SimLC might be another option to tackle vision improvement and KC in one go?

Thanks Eddie. I'll come back once I start the process.
This SIM CL is something she didn't mention. Se was saying she was trying to get the equipment in regional on public but if she is not able to get this in new year, she could refer me.
I spoke to aviva too and they said they would cover but because it was a new techology, my consultant would have to write a medical case to them for aproval. Not sure how that would go.
The vision is good. I only wear glasses at work as words blur and i have to squint a bit. My contacts for sports are astigmatism ones.
I will ask her about sim cl and see what the story is there.
Tell me, if you know, can these treatments wreck it altogether as that is my fear or will they at worst in your opinion just not do anything??

Thanks again
Irish

eddiem74

irishproduce wrote: »

Thanks Eddie. I'll come back once I start the process.
This SIM CL is something she didn't mention. Se was saying she was trying to get the equipment in regional on public but if she is not able to get this in new year, she could refer me.
I spoke to aviva too and they said they would cover but because it was a new techology, my consultant would have to write a medical case to them for aproval. Not sure how that would go.
The vision is good. I only wear glasses at work as words blur and i have to squint a bit. My contacts for sports are astigmatism ones.
I will ask her about sim cl and see what the story is there.
Tell me, if you know, can these treatments wreck it altogether as that is my fear or will they at worst in your opinion just not do anything??

Thanks again
Irish

Well in my case I was diagnosed with KC earlier this year and only found it as I noticed my sight was worse in my right eye. For example if I closed my left good eye and looked at my email on a 20" monitor around 2-3 foot away I could not read it. So when I went to the Wellington as I had not got glasses or contacts, I was looking to; 1) stop KC progressing, and 2) improve my vision if possible. This is where SimLC came in, although you have to have enough corneal thinkness to be able to have it, 400 micron I think, and I had 470'ish. I bascailly said I would give it a shot and worst case glasses or perhaps contacts would then be needed. As it could also be done in the same procedure within 1hr it made sense.

I am with Aviva also, they will cover the CXL piece but not the laser so you would need to cover that yourself. I just had the Wellington fax in a justification and I was approved in a matter of days.

I was just back this week for my 3 month checkup and all progress has been great and better than expected, so I seem to be really lucky. My vision is improving I can now read the email and my eye test this week said I would easily pass a driving test with a few lines on the chart to spare. Once the eye settles down and measurements become consistent there might be a option for some further laser fine tuning to get it as good as it can be, but that will be probably 9 months or so down the line.

So in summary in my case, so far, so good.

I also have KC in my left eye, so will need to tackle that also after the right eye is finished.

irishproduce

You are in a very similar situation to me Eddie.
My right eye was knackered by the time I realised it.
Was way too late for any corrective treatments. I went straight for graft.

My left isn't too bad so still workable I am hoping but I can tell it is getting worse progressively.

I would like for it to be stopped.

I will ask my consultant for the results of my orb scan and see what the 400 micron situation for me.

Michael O Toole

I attend Donal O'Malley, too and Professor Michael O'Keefe in the Mater. Both are excellent.
Had a full graft in 1991 at the age of 21 and hadn't had any major problems since.

Shane732

Going in for Keraflex on the 13th and Crosslinking the following Tuesday

S.M.B.

I made a claim with VHI for a consultation I had which basically recommended grafts for both eyes and VHI are after responding with a letter saying that my condition is Chronic and I am only covered for acute episodes.

Has anyone come across something similar? I was never very informed in my health insurance policies but I was very surprised to be told this.

Shane732

S.M.B. wrote: »

I made a claim with VHI for a consultation I had which basically recommended grafts for both eyes and VHI are after responding with a letter saying that my condition is Chronic and I am only covered for acute episodes.

Has anyone come across something similar? I was never very informed in my health insurance policies but I was very surprised to be told this.

Yea - they're a crowd of *****rs!!

S.M.B.

Did you encounter a similar situation?

Any luck in getting them to cover anything KC related?

Shane732

S.M.B. wrote: »

Did you encounter a similar situation?

Any luck in getting them to cover anything KC related?

I'm having a similar battle with them at the moment. They just aren't interested in covering cross-linking.

I'm told the other insurance companies will cover it.

What are you trying to get them to cover?

irishproduce

I am still with vhi but have out in request to transfer to aviva.
Was in regional limerick today to have some corrective work done on the grafted cornea (right). Consltant needed to make some incisions to relieve tension in it so that a lens night hopefully be possible to get on over it. When i was in there, they asked me if vhi or public etc, i said vhi so although it was only day treatment, they will probably bil vhi. If vhi write me saying not covering, they can go and sing, hospital with them. It was no cxl related but kerataconus yes.

Back in tomorrow to see how the incisions went.
Wll be chatting to he also about the microns etc. Also about cxl on right.

ozymandias10

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?

how did this go., Iwas referred to Billy Power as well....was told him and one other in London were the leading lights in this surgery

lastlaugh

irishproduce wrote: »

I am still with vhi but have out in request to transfer to aviva.
Was in regional limerick today to have some corrective work done on the grafted cornea (right). Consltant needed to make some incisions to relieve tension in it so that a lens night hopefully be possible to get on over it. When i was in there, they asked me if vhi or public etc, i said vhi so although it was only day treatment, they will probably bil vhi. If vhi write me saying not covering, they can go and sing, hospital with them. It was no cxl related but kerataconus yes.

Back in tomorrow to see how the incisions went.
Wll be chatting to he also about the microns etc. Also about cxl on right.

How is your vision after the graft? Does the grafted part cloud up initially and is it gone now?

Is KC 'fixed' after that procedure as in halos etc gone?

Cheers

MarcusFenix

Hi guys, I am due to get crosslinking this day week in the royal victorian ear eye and nose, I think my doctor's name is Dr. Murphy. Anyone have any opinions as to what kind of standard this place works to? I only really thought about this today but are they good in there? No-one here has ever really mentioned it so I'm starting to question....why?

NealB

MarcusFenix wrote: »

Hi guys, I am due to get crosslinking this day week in the royal victorian ear eye and nose, I think my doctor's name is Dr. Murphy. Anyone have any opinions as to what kind of standard this place works to? I only really thought about this today but are they good in there? No-one here has ever really mentioned it so I'm starting to question....why?

Hi Marcus,

You'll be reading this after your crosslinking, but just to give an answer, I was referred to the Eye and Ear fifteen years ago and heve been with then ever since. I was seen by a Dr Kavanagh in the contact lens clinic. He was great, I never had an issue with my lenses, but he is now retired. I'm not a regular attender but I have just seen a new Dr there; Dr O Malley of Dixon Hempenstall mentioned positivly on this thread, so it seems that they are still getting good people.

Shane732

Heading in for Keraflex tomorrow.....

eddiem74

Shane732 wrote: »

Heading in for Keraflex tomorrow.....

Best of Luck, let us know how you get on.

MarcusFenix

I'm sitting in waiting room waiting to be cross linked!

eddiem74

MarcusFenix wrote: »

I'm sitting in waiting room waiting to be cross linked!

Hope it went well, let us know how you got on.

ZoeZii

Is there a long waiting list to see Donal O'Malley?

MarcusFenix

eddiem74 wrote: »

MarcusFenix wrote: »

I'm sitting in waiting room waiting to be cross linked!

Hope it went well, let us know how you got on.

Went relatively ok I assume, vision is much worse but I presume that's to be expected, have a follow up next Monday and will let ye all know then if it's yay or nay!

NealB

ZoeZii wrote: »

Is there a long waiting list to see Donal O'Malley?

You need to be referred by an optician/doctor to go to the Eye and Ear and it takes about 5 weeks to get an appointment. O'Malley is the contact lens guy in the E&E so if it's contacts you want then make sure that the referral letter says you want to attend the contact lens clinic, otherwise you'll see a general optician first and have to wait for another appointment for the lens clinic (which is on Wednesdays).

Or you can make an appointment at O'Malley's practice on Suffolk Street. That shouldn't take more than a week or two.

MarcusFenix

Hi lads,

Well I've had my right eye cross linked in the eye and ear almost two weeks ago, and had my follow up Monday, the vision is still blurry which is to be expected. I had more pain for longer than usual as the contact fell out the day after, so...be warned I suppose!

When I went in Monday, the doctor who saw me (not prof Murphy) for the follow up told me I'll have to come back in 4 weeks, but I'm going to the states for 2 months for work so had to push that out till first week of April.

I asked about the next course of action for the eye as the vision is very poor. She basically said two things, 1st, it's my own problem but she would advise me to go with contacts which I don't want but are most likely to work because 2nd, they have to see how long the cross linking will last!! So they think it will only slow down progression not stop it. Apparently grafting fixes it totally, why not graft first day??

Seeing as the eye and ear is hse I'm afraid I'm not getting the best advice available, does anyone know the best place for me to go next? is there a well known expert in Ireland who I would be better off seeing?

I've seen a procedure where they insert a ring under the cornea and i'd love to see what an expert would think of this procedure.

Any advice is appreciated!

Thanks

eddiem74

MarcusFenix wrote: »

Seeing as the eye and ear is hse I'm afraid I'm not getting the best advice available, does anyone know the best place for me to go next? is there a well known expert in Ireland who I would be better off seeing?

You could get a second opinion from Dr Cummings at the Wellington Eye Clinic. Its the only Doctor I have been too primarily based off the recommendations in this thread and my own research. He seems to be well recognised in the field and does lots of research into KC on it.

You could always contact the clinic directly and ask for information about his expertise and what he does in the field of KC.

Best of luck.

Gearoidk

Hey.
I was diagnosed with keratoconus about 4 years ago. My vision isnt the worst with glasses but i still know that i need better. I got the contact lenses a few weeks ago but i cannot seem to get used to them. Does anyone out there have any tips on how to get used to them as i seem to be having no luck with them. Any tips would be greatly appreciated.

NealB

Gearoid,

It depends on what problems you are having. Eyes dry out during the day if you don't drink liquids, you won't notice any difference wearing glasses but hard lenses are a different story. So make sure to drink liquids.

Are you cleaning the lenses every morning before you put them in? Protein builds up on the lenses so give them a rub (between index finger and thumb) every morning in a bit of the soaking solution. You can use protein removal tablets but I didn't find that great (my Op also thought they were a waste of time).

Also try taking the lenses out for an hour and give your eyes a break, particularly if you're at a computer all day. You will get use to them over time.

N

irishproduce

Gearoid, I have problems with lenses too. I cannot get them to sit on my left eye properly which is supposed to be my good eye. I could spend about 30 minutes trying to get one in but eventually I will get it, I have to be quite aggressive. Stay at it, it is a nusiance but some days it can be easier, I don;t know why.
Go to see the Donal O'Malley if you are near him, he will be able to help you too.

bambi215

Hey all, ive recently been diagnosed with keratoconus... Reasonable bad in.left eye and a little bad in right eye. I visted Mary Eustace in dublin today and she put me so at ease. I still have a lot of worries esp about lookin.in cross linking and if it may b an option.for me in the future. But i am sure all my concerns will b dealt with as we move forward i am worried about the.lenses n the fitting hopefully it wont be to scary

irishproduce

Folks,

Got my appointment with Blackrock (Wiliam Power) after being referred for CXL by Ms Cleary in Limerick.
Have to bring €180 with me on the day :-)

Can anyone tell me what is the craic on the day.
Is this it like, straight into the surgery that day? I am gonna ring em to confirm tomorrow anyway.
Ms Cleary told me the worst case scenario is that it wont improve but it wont get worse as a result of the CXL

irish

Dero

bambi215 wrote: »

Hey all, ive recently been diagnosed with keratoconus... Reasonable bad in.left eye and a little bad in right eye. I visted Mary Eustace in dublin today and she put me so at ease. I still have a lot of worries esp about lookin.in cross linking and if it may b an option.for me in the future. But i am sure all my concerns will b dealt with as we move forward i am worried about the.lenses n the fitting hopefully it wont be to scary

I've had lots of lens fittings with Mary and never had any issues. She really does know her stuff with regard to lenses. I have to go back shortly to get fitted in my right eye after my cornea transplant (no CXL magic for me ).

Anyway, good luck. I've had KC for almost 25 years and the lenses are fine really. Sure they're a hassle and a pain on dusty days etc., but you do get used to it and it's better to be able to see. :-)