Rae Lovejoy April 2019
Further to a full graft, and a cataract op, my left eye now needed wide diameter CXL (collagen cross linking) to preserve the tissue and stabilise the graft.
Here’s my experience at one of the UK’s finest eye hospitals, Moorfields in London.
Above: Wide diameter CXL at Moorfields
After almost twenty years with keratoconus, it was my turn for cxl (collagen cross linking), after having had a corneal graft and post op cataract previously.
I had enjoyed really good vision after my graft with a hybrid lens and then after a cataract op for the grafted eye my vision was amazing (-1.50) I didn’t bother with any lens. Managed like this for years, until in 2017 I realised the vision in my left eye was getting worse, lots of blur and finding it hard to focus. Thanks to moving house 2018 was super busy but I did manage to see my surgeon Mr Masoud Teimory at the newly opened Southland eye hospital in Sussex. I also saw the contact lens clinic at Moorfields and they and Mr T agreed that as things were, fitting a lens was not possible. My right ungrafted eye is stable (has been for years) and although the uncorrected vision is poor, with an RGP lens I get excellent vision and can work, drive, travel etc.
Mr T could see what the issue was and recommended that I see he colleague Mr Dan Gore at Moorfields in London, as he had the specialist equipment needed.
So in October 2018 I met with Dan Gore, Consultant Ophthalmic Surgeon, and leading expert in his field at Moorfields Eye Hospital, an experienced corneal, cataract, and laser eye surgeon qualified to treat a wide range of conditions affecting vision, specifically keratoconus.
He suggested wide diameter cxl on the specific area where my donated cornea meets what is left of my own tissue, in a 3mm wide donut ring in my eye. Corneal collagen cross–linking (CXL) is a procedure, wherein a photosensitiser (riboflavin) and ultraviolet (UV) light are used to strengthen cornea by promoting formation of inter– and intra-fibrillar covalent bonds. I just needed this in a very specific area.
Keratoconus was still evident around my grafted cornea, and needed to be halted and the tissue strengthened. In epithelium-off CXL, epithelial nerves are completely removed in the treatment zone, typically an 8- to 9-mm diameter region of the central cornea. Epi off cxl is thought to be more effective due to its’ invasive nature, and long term effects better than with epi on cxl.
My graft itself was clear and healthy, it was this joined area that was failing, causing a groove to form around the donated disc of tissue- which explained the onset of poor vision and why I could not wear a lens at all. Hence the need for a 3mm ring around the graft- not the grafted area itself, that needed the cxl treatment.
The surgery was set for March 21st 2019, I figured I had nothing to lose, the graft needed to be stabilised and it would be good if the vision could be improved, and the keratoconus around the edge had to be halted in its tracks.
Below: Making sure Mr Gore does the correct eye!
I had been told that CXL was very painful in the first 24- 48 hours. Described by some as ‘brutal’ even. I was ready! I could read no lines on the Snellen chart with my left grafted eye at this point. Here’s my pre op scans:
The whole procedure took about 45 minutes. I had the 3mm ring of epithelium lasered off first. This isn’t painful but it is not pleasant. You can smell your own burning eye tissue which is weird, although it is very brief.
Then the riboflavin drops were administered into the eye (above) and the finally UVA light – an intense beam – is above the eye (below)
It’s all quiet and you lie still. Your eye is held open in a Clockwork Orange way, Again you cannot feel anything. I almost fell asleep as I zoned out.
You have local anaesthetic drops and immediately after the procedure it all felt fine. I had sunglasses and painkillers and the journey home by train wasn’t too bad. They were right that the following 24-48 hours would be tough.
Not going to lie, it was absolute agony.
I mostly stayed in the dark resting, trying to sleep, keeping still, and administering the numerous drops- anti rejection, anti biotic, lubricating and so on. The local anaesthetic quickly wears off.
I had a plastic eye cover for the first night. The soft contact bandage lens folded over on itself and I removed it that first evening. This actually alleviated some of the pain.
Below is me on Day 2. Could hardly open my eye!
Then I woke up on Day 3 and the pain was gone. It was the weirdest feeling. I still had a regime of eye drops still, but it all felt so much better. I even had fairly decent vision. Happy days!
On 28th March I returned to Moorfields to see Mr Gore. He was very pleased with my rate of healing, as being 50 years old healing isn’t a speedy for me as it is for example, in a teenage boy after CXL. Even more encouraging I could read up to line 4 on the Snellen with pinhole glasses. Result!
I will go back to see Mr Gore in July, by then the eye will be 100% healed and the options for vision correction can be considered, once we have confirmed that the CXL worked and the graft and the donut ring around it are stabilised. In the meantime I will continue with the FML anti rejection eye drops, and comfort eye drops as needed.
I will update the blog once I have the news!