crosslinking

[harker]

Hi Peter,

I was wondering how you felt about this situation.

Would you crosslink an eye that has 20/25 acuity with glasses (albeit with bad aberrations), and very close to perfect vision with contacts? The eye in question is at 419 microns and dropping at a rate of more then 20 microns a year, so a decision has to be made very soon.

For reference, my left eye had similar vision and, with glasses, I've lost a line or two following CXL. It's been about six months, so maybe over the next couple of years it'll go back to normal, but, for the purposes of making a decision I'm preparing for the worst, and assuming that having it done on the right will cost me my glasses.

Decisions, decisions.

EDIT - Ok, "cost me glasses" is a bit melodramatic. But it'll make a big difference to how much I'll be able to rely on them.

[Fernando FV]

I agree with Dr. Goren. Nevertheless in cases with vision close to 100% (6/6) I would recommend an epi-on cross-linking. Maybe less effective
than epi-off but also less risky.

regards

[dalbeath]

Before my CXL 8 months ago I did not even own a pair of glasses as they did nothing for me so I lived in piggy back lenses. Now, post CXL I wear glasses 90% of the time and just use lenses for sports

At the time I did the CXL to 'preserve' my vision , I never thought it would enable me to wear glasses. For me it was the best decision

[Lynn White]

Rose,

Just a thought about having cross linking done abroad. Although it can be cheaper or, in the case of the Dresden team, the surgeons have a lot of experience, the issue is rather what happens for follow up. You may be able to stay for a week for follow up but if your son has issues when he is back in the UK, then this can cause problems if you want rapid attention.

There are many excellent clinics in the UK, so do consider the follow up issue when making your decision.

As for cross linking a good eye, I agree with the sentiments here but would advise regular follow ups (topography at 6 or 12 month intervals) to ensure that progression was not missed.

I have seen several patients recently who either felt their good eye had not changed much, or had changed only a little, but found that there had been significant changes. If the steepening is displaced from central vision, then visusal changes might not seen straight away.

Lynn

[taffer87]

Accuvision quoted me £2,500 per eye. The reason why they said its higher than the other Harley Street clinics (£1,200 per eye seems to be the average there) is that they claim to have better technology and may also use laser, if appropriate, within the price.

Does anyone have views on this?

Also what about cross linking for someone who has pefect vision with glasses?

[Anne Klepacz]

Hi Taffer87 and welcome to the forum,
Prices for CXL seem to vary quite widely. I recently heard a price of over 4K quoted. I guess it's what's known as market forces!
As for crosslinking when there is perfect vision with glasses, personally I don't see why anyone would do that unless there is clear evidence of progression. Any surgical procedure, including CXL, has some risks so it's a question of balancing risks against possible benefits.
Anne

[taffer87]

Thanks Anne.

Basically, I have normal vision with glasses. I went for a lase eye surgery conusltation last month and was told that I can't have that because of Keratoconus. That was the first time I had heard of it and since then have been researching into it and came across this great forum. The Optometrists, who did my laser eye surgery consultation, wrote a letter to my GP and told me that I should think about getting cross linking done as I should try and preserve vision as it is now, rather than wait for it to deteriorate which given I am only 24 is a strong possibility.

I have got PMI through BUPA, so have a consultation with a consultant in a Spire Hospital for start of March (referral by GP).

Just not sure what should I do, I should be able to afford cross linking etc especially if it preserves my vision now. Reading the forum there have been a few cases where BUPA has paid for this as well so thought will try for that, and failing that pay for it myself.

In an ideal scenario, what I would like is to have cross linking to preserve vision and then Intacs or hard lenses to remove the need for glasses. Will keep you guys posted on how things go!

[Peter Goren]

I'm not sure about current prices, but patients paid about $1000 per eye in Budapest during my university's CXL study a couple years ago. Crosslinking is a routine surgery now at many clinics. The most important step is that the surgeon knows how to properly remove the epithelium. The rest of the procedure can even be handled by an assistant. I am sure that follow-ups could easily be conducted locally. There is a lot of research underway on epi-on crosslinking. Although we can't be certain that the results will last as long, it seems like a much safer option for someone close to 100% vision.

[Rose]

Thank you for your thoughts Lyn White, the follow up issue is of concern of course and one I would need to investigate. It is important.

For Daniel who opened this thread this is the answer I have had from the hospital in Dresden. They first want topography results sent to them and then if crosslinking is advised the process and cost is as follows:
at first you have to make an appointment (it has to be on a monday) --> costs - 250€ (to be payed cash in the hospital)

if an operation is indicated, the operation is on a tuesday --> costs - 670€ for each eye

on wednesday will be the first checkup and on friday the second checkup

for it is a day surgery you need to find an external accommodation

you need to stay in dresden (or around) for a week

if wearing contact lenses they should not wear them ten days before his surgery - very important!!!

when you have the appointment you need to bring passport, glasses, contact lenses and maybe someone to translate (easy to find )

So it would cost around £1300 - about the same as in England but with travel and accommodation costs added. The advantage is surgeons who have been doing it for many years, disadvantage maybe more difficult follow up. Food for thought though.

[dalbeath]

Humm....slightly off topic but why do you need to remove RGP lenses 10 days before? I had CXL done last year and took mine out about 10 mins before!