HELP - I'm getting no replies! why?

[PeterBalu]

Hi, I would like to know if anyone can give me some advice! About 5 years ago I went to have a consultation to find out if I was suitable for laser treetment! I was told no by two different companies one who said my astigmatism (pardon my spellings if incorrect) was too high and the other suggested that I might have Keratoconus and I was reffered to the hospital! At the hospital I was told no I dont have Keratoconus... I was a bit confused now as two people had mentioned Keratoconus to me... anyway I carried on wearing soft contact lenses for a few more years and was noticing my prescriptions were changing and eventually I was told I need to wear RGP lenses... I found these really uncomfortable and could not get used to them... I was referred back to the hospital who now confirmed I do have Keratoconus! so because I did not want to wear hard lenses I started doing some research into the alternatives... I found that I can wear Kerrasoft lenses... but found that this was an expensive option roughly £50 per month... and that it was not going to prevent the Keratoconus from developing and that My prescription will still keep changing! Then I looked into cross linking! and I thought yes I will get this done as it so far shows that it can prevent keratoconus from developing! I went to see a specialist called david jory (whom some of you allready know, as I noticed from some comments) He was really good at explaining everything to me and told me to go away and think about it... at this stage I was thinking I am deffinatly going to get the cross linking done... and I was also thinking of haveing Intacs or lens implants depending on what the surgeon said! I then decided to find other clinics who also do the crosslinking to compare the price and I went to see someone at Accuvision! Here they have recomended I have the crosslinking but with a different procedure... the procedure would be in three stages.. the fisrt stage being 1) remove the epithelial, then 2) use topography guided LASIK eye surgery to reshape the cornea.. im sure they were saying they would remove a bit of the cornea from the tip of the cone shaped cornea! and then finally stage 3) Corneal Collagen Cross-linking with Riboflavin! Now I feel confused to what I should do... I have read that laser should not be done on keratoconus patients but then again I have seen videos on you tube of this being performed! If anyone can help me with any advice it would be really appriciated! My email address is Peter_Balu@hotmail.com Thank you kind regards Peter Balu

[Andrew MacLean]

No contact lenses will ever prevent keratoconus developing.

I am less sanguine than others about the claims made for CXL, but there are some good stories about it on the www.

I am afraid I have no direct knowledge of CXL and am not in a position to offer advice on which option would be best for your case: indeed as none of us can see your eye it would be hard for anyone to give particular advice on the best option for your particular eyes and their needs. What people can do is offer their experience and on that basis maybe help you form your own decision.

In your position, I think I'd go back to the first consultant and ask him to comment on what was said by the second. You may bat back and forward a bit between the options before forming your final judgement.

As to lenses: there are several different sorts of lens and different materials that combine to offer a huge range of lenses suitable for keratoconus. They may not arrest the development of KC, but I wonder whether you are giving up on lenses before you have given them a chance?

Anyway, all the best.

Andrew

[GarethB]

As far as I am aware no-one does laser sdurgery on a Keratoconic eye because the corea is thinning, so why make it thinner still. There have also been a number of people that have come to this group post laser surgery that have developed KC as a result of laser eye surgery.

The alternative to just CXL is to have intacs to bring the cornea to a more normal shape followed by CXL to 'fix' the cornea in that position.

Why were soft lenses costing you £50 per month?

I have calculated my monthly costs for the K3 lenses at £5 for the cleaner, £12 for the saline and £6 for lubricating eye drops = £23 per month. With RGP lenses I am looking at about 3 times this.

Lenses cost just over £50 per eye per year as they are done through the NHS.

Unfortunatly post surgery a good number of people will still be needing contact lenses.

[PeterBalu]

Thank you for your replies!

I think I will contact the first consultant and see what he says about the other recomendation from Accuvision. I just thought i'd see if anyone else had, had treetment from Accuvision. I have tried different contact lenses but not kerrasoft lenses, I got in touch with someone who told me my kerrasoft lenses would cost me 50 pounds per month I was told they are not available on the NHS. What I need to do is find out where else I can get Kerrasoft lenses from and seek some more advise about them. My concern was that if I get the kerrasoft lenses made and then a few months later my prescription changes I would recharged for new lenses. A few months ago the hospital I was seeing had ordered me some new RGP lenses which I have to go and trial on Friday, but a few weeks ago my optician told me that my prescription has again changed and those RGP lenses wouldn't be any good. So thats the main reason I want to have the crosslinking done and see if it helps!

[GarethB]

I'm sure crosslinking will help stabalise things absed on what i have seen reported by people that have had it done. It does appear to take upto 12 months for things to stabilise again but worth it if it means your prescription changes far less frequently.

[lars]

I have done a prk+cxl procedure and I can say that the result is satisfying for me but like Andrew and Gareth wrote, there is always a risk because this is a new treatment. I am now 24 and had an aggressive form of KC so I decided not to wait and have cxl performed. I need my vision now so I could not wait. My vision was not good with lenses and my thickness more than 450μm so I also had prk here in Greece.
Discuss this with your doctors and think what is best for you.

Cheers

[pepepepe]

I had a very bad experience at the laser place you said, really had to bite my tongue there and I only went there to get tests done!, In my opinion, they talk about beings so wonderful on their site, but its NOT the same. They did not have a clue. Be warned.


Pepe

[PeterBalu]

A BIG thank you everyone who has replied.

In the past week I have now got some new RGP lenses... these were supplied from the hospital and I have been finding these quite comfortable (well for most part of the day) and I am quite impressed with my vision. I have decided to wait untill the summer before I decide to have CXL.

When I put the lenses in they are quite comfotable but during the day my eyes get irritated and they get really watery, only then I feel as I should take them out cause my eyes go red... and when I do take them out I get a urge to rub them... which I try not to do! I did tell them at the hospital that my eyes get dry and they said they will give some drops if that happens so hopefully at my next appointment i'll have some drops that will help me to tolerate them during longer periods of the day! Is it quite normal to be affected in bright sunlight or brightly lit rooms with RGP lenses? as my eyes often get watery when exposed to bright light, and also if its windy... is there any other way of helping them, other then sunglasses, which I find ok to wear in the car but not at work in the office....!

The hospital told me that if I feel to uncomfortable with RGP lenses they will try kerrasoft lenses! Does anyone know if the vision with kerrasoft lenses are as good as RGP lenses and are there any other benefits otherthen comfort?

Kind regards,

Peter Balu

[Andrew MacLean]

Peter

I know that the urge to rub when you take out your lenses can be very strong indeed.

I have a bottle of Optive in my fridge. When I take out my lens I flood my eye with the soothing cool of the artificial tear. It is better by far than chocolate!

I also sometimes use hypermelose, some people use systane, infact there are several artificial tears on the market. Find one that works for you and stem the urge to rub!

All the best

Andrew

[pepepepe]

Hi Peter,

Glad things are more on a level now for you.

I wanted to ask, who this someone was you mentioned on your first post.

someone who told me my kerrasoft lenses would cost me 50 pounds per month

If you get contacts from your hospital it would be a small fraction of this cost.

There is more of a risk with infections with soft lenses which is commonly known. But there are all sorts of lenses and fits to try in RGPs. Vision is often better with RGPs.

Keep us informed. Pepe