Could use a second opinion - any recommendations?

[Dave_W]

Hi

I’m a 32-year-old man, living in Liverpool, who was diagnosed with pellucid marginal dystrophy at the age of 17. Since then, I’ve been very lucky, as I have been able to get by quite happily with ‘normal’ soft contact lenses, albeit they have to correct around –11 diopters and a significant amount of astigmatism, as the distortion caused by the PMD is not across my line of sight, particularly in my right eye.

Until very recently, the vision with contact lenses in my left eye was acceptable and the vision in my right eye was actually very good with soft contact lenses. However, I lost my right lens around New Year and have since had two replacement lenses, which are supposed to be exactly the same, but do not correct my vision properly.

Instead of having good vision in my right eye, I now have a definite ‘shadow’ or ‘ghosting’, particularly with lights and text. However, I don’t have this problem when wearing glasses, so it seems to be a problem with the contacts themselves. I am also finding that the left eye’s vision has worsened as well (and this lens was a replacement I got just before Christmas, as I’d had the ‘old’ one for six months or so).

Having spoken to the doctors at the Royal Liverpool Hospital (IÂ’m under a Mr. Batterbury), it seems they do not have much experience dealing with kerataconic patients, let alone someone with PMD. I think theyÂ’re rather sick of the sight of me, as IÂ’ve been in and out several times in the last couple of months, with no progress being made on a solution to the problems IÂ’m experiencing.

I was wondering if anyone could recommend both a doctor and/or optometrist who has experience with dealing with patients with PMD. IÂ’d even be willing to pay for private consultations if that proved necessary. In the North West would be ideal, but am happy to travel further afield if itÂ’s needs be.

If anyone has a similar experience to the one I describe above, i.e. vision suddenly being worse following a replacement lens, and any insights as to what, if anything, might have caused this to happen, IÂ’d be most grateful to hear them. IÂ’m well aware it could be just one of those things and the disease has simply progressed after standing still for the last few years!

Many thanks in advance for any help/replies.

[paula hardman]

if you can't find anywhere closer, then the vision center at UMIST might be worth a try. It's a couple of minutes walk from Piccadilly station in Manchester (trains to Liverpool) and they get KC patients on a weekly basis. Don't know about your other condition but as they train opticians you'll probably be very welcome! I started going there last autumn cos my previous opticians got rid of the contact lens specialist.

e-mail vision.centre@umist.ac.uk

[Dave_W]

Thanks for the reply Paula - think I'm just getting frustrated having this 'double' vision, but having read around these boards and the K Center ones, there's clearly some more options to discuss with my current optician.

If that doesn't get me anywhere, then I'll be heading over to Manchester double quick.

Thanks again

[Pete Fricker]

I Also Live in the Northwest (Lancaster) and go to Manchester Eye hospital (a revitalizing 30 min walk from Oxford Road Station)
All the Specialists seem to know what they are doing....... (I am 6 months post op Graft)


Pete

[Lynn White]

Hi Dave...

You do not say how old the original lens was. Often an older lens becomes stiffer, thus masking astigmatism. Replacement lenses are more malleable and mould to the eye - thus your astigmatism shows through more. This is often a problem with "normal" patients as well!

Your astigmatism may well have increased over time but as it was masked by your increasingly stiffening lens, you did not notice until you changed lenses.

You do not say if your soft lens is "toric" ie correcting astigmatism. If you give me more information, I may be able to help as I am an optometrist myself.

Lynn

[Rob Armstrong]

Hi, sorry this is the first time I've been on here in a good while.

If you're still trying to find somewhere local to have your KC treated, I've been attending the eye department at Walton hospital for years now.

I had my cornea graft surgery there a couple of years ago.

I was referred there by my GP.

Might save you having to travel to Manchester.

Rob.