Keratoconus, my story by Rae, part 2

topographyBy the summer of 2006 I was despairing of ever having decent eyesight again. Having now been to two different NHS hospitals I was wearing hard lens in one eye only- the left eye had nothing in it at all. I had been prescribed a very early hybrid lens for the left but I could rarely wear it. One place I had been sent to by my GP had a topography machine under a blanket in the hallway and no one knew how to switch it on- I actually walked out if there! I was reading online about other lens options and a new treatment called collagen cross linking and also Intacs but couldn’t find much out about either- especially not on the NHS.
Online research leads me to Mr Simon Levy, a renowned corneal specialist, in London, at the Central Middlesex hospital, so I sent him this email:
Dear Mr Levy

I was really excited to find your details on the internet, and particularly as you do Intacs in the UK
I have had keratoconus for some years now which has got progressively worse, coupled with astigmatism.

Unfortunately I have had a variety of treatments and advice from the NHS with a varying degree of success.
I have a hard RGP lens in my right eye which is ok, but does get very sore, and a new type of hybrid in the left (like a soft Perm but better) the vision is ok, but this lens is badly affected by bright light and air con. At the moment I can’t wear it at all.
I have double vision most days with the lens in, and triple vision when they are out, I can’t drive or read or recognise faces even close up with no lens in, of course glasses stopped being any use a long time ago.

So far I have seen an ophthalmic specialist at the XXXXXXX, but their keratoconus machine was under a blanket in a corridor and the service was poor, I also went to a specialist in XXXXXXXXXXX (which was full of really old people) and although they knew of a lens that would help at that time they would not prescribe it their NHS trust budget wouldn’t allow it.
So now I buy my own lens via a private chap in Worthing, who is very good with KC, but I am now stuck as to where to go for regular eye exams etc, this chap fits the lens only.

I am 37 years old, female, and in good health, increasingly I find my work and daily life affected by KC and it gets worse. some days I can barely get a lens in as it is too painful.
Is it possible for me to see you either via my GP as a referral, or what are the costs privately?
I know there is no miracle cure (yet) but I am willing to try new things, even surgery, or Intacs, if it means my vision and comfort can be in some way improved.
I would really appreciate it if you could let me know the best course of action to take.

Rae Lovejoy
Mr Levy agreed to see me privately and my GP contacted the various hospitals where I had been seen before to get my notes sent to him. Finally I saw him in September 2006. I remember it cost around £100, which I was happy to pay to get some answers. Mr Levy was great. He said that if I was his patient he would be recommending a corneal graft for my left eye and that Intacs were not a viable option for either eye. He knew of a great corneal specialist in Worthing at the hospital, and he suggested I see him as it was local to me in Brighton. This was Mr Masoud Teimory. So Mr Levy wrote a detailed letter to my GP so that he could then write to Mr Teimory and get me an appointment there.
This was a great start! I finally felt I was getting somewhere and that someone understood and was trying to help me with my keratoconus………


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