My experience with PMD and a semi-scleral lens

[GerardPMD]

Hi all,

This is my first post. I have been reading the archive of this wonderful forum over the past few months, which has been super interesting. This place contains a lot of real-life experiences and in-depth details which cannot be found elsewhere. A big thank-you to the people that run this forum. I've now decided to register and post my own experience, hoping it might help others!

I have a distorted cornea called PMD (Pellucid Marginal Degeneration) in my right eye. It is giving me double and blurred vision (20/30 to 20/40, depending on the size of my pupil, which can be HUGE at times). Most annoyingly, I see "elongated circles" around street lights. Does that sound familiar to anyone?

I first noticed the distortion at the age of 16 (ten years ago), but it got significantly worse around the age of 22-24. I used to be very allergic to dust/cats/pollen when I was a kid, which made me rub my right eye frequently. This might well have triggered the PMD. My left eye was rubbed far less because I am right-handed, and indeed my vision in the left eye is good and the topography does not show *any* sign of PMD or KC. (SO KEEP YOUR KIDS FROM RUBBING THEIR EYES!!!)

I feel grateful for having one good eye, and I feel a lot of sympathy for people who have to suffer KC in both eyes. However, one (small) disadvantage of my situation is that opticians never worried about my right eye because the left one was good, though the distortion in my (dominant) right eye has always given me dizziness and troubles concentrating. My distorted eye is near-sighted while my good eye is far-sighted, which is a hint, yet none of the 7 opticians and 2 opthamologists which I visited in the past 10 years mentioned KC! Finally this year, a wonderful optician noticed that my right eye looked very distorted under the slit lamp, mentioned that it might be KC, and referred me to the eye clinic at the Royal Victory Hospital in Belfast.

Sadly the NHS put me on a never-ending waiting list. It's been 7 months since the referral and there is no immediate prospect of getting an appointment. I got fed up and took my hard-earned savings to a private clinic in Dublin, where the lovely staff gave me a quick appointment and diagnosed the PMD by means of a topography. My cornea appears to be very thick (> 480 micron), and so I was told to be a good candidate for CXL combined with either Keraflex or laser. However, I learned from this forum that these treatments are certainly not perfect or risk-free yet! Moreover, little seems to be known about the most appropriate treatment for PMD? I decided to wait for evidence that my PMD is deteriorating before considering CXL. A contact lens seemed by far the best first step!

I now got a rigid semi-scleral fitted (SO2Clear). I was very scared about a rigid lens, thinking it would be hard to tolerate. I asked the lens expert about a hybrid lens, but was recommended to try the rigid lens first because the material lets more oxygen pass. I've now worn the SO2Clear lens for three months in the right eye, combined with a "normal" disposable soft lens in my good left eye. In the first week it was extremely difficult to tolerate the rigid lens, however, I became used to it soon after... and right now I prefer the rigid lens over the soft one! The rigid one feels way way more comfortable at the end of the day!

Unfortunately the vision in the right eye isn't quite perfect just yet, but there's been a massive improvement for which I'm grateful!

Hope some of this story might be interesting to others.
Best luck to all!!

[Anne Klepacz]

Hi Gerard and welcome to the forum!
And thank you for your post - the symptoms you describe will certainly sound familiar to a lot of us, whether we have KC or PMD (and there are several PMD people here). It's good to hear you're getting good results from your SoClear lens. Scleral or semi scleral lenses seem to work best for PMD - the SoClear lens is relatively new, but several people here like it. Getting good comfort AND good vision can be a challenge, but hopefully you'll get there.
All the best
Anne

[ruralrob]

Hi Gerard and thanks for your very interesting post .I can relate to some of what you say .I have allways suffered from hayfever and as a child was constantly rubbing my eyes ,so allways wonder if that caused my KC ,also I know what you mean about having one good eye ,my surgeon in the past has been reluctant to do a graft on my left eye as my right one is so good ,but as the scar was getting bigger over the years I think he realized it was getting me down .Its a shame you had to go private to get treated .We keep hearing how the NHS is supposed to be improving ther waiting lists ! I live in Essex (clacton on sea ) and have not usually had to wait more than 3 months to be seen so I guess I have been lucky .


All the best to you

Rob