Ideas

[Lizb]

I was diagnosed with Keratoconus about 8-9 years ago in my left eye, but was told that my right eye was ok, though it does appear to have a slight degree of kerataconus.
I tried for several years to adapt to using contact lenses, both just semi-gas and the piggyback style. About 18 months to 2 years ago I gave up attempting to use contact lenses as they were so uncomfortable for me to wear - longest time I could wear them for was 1 hour without my eyes drying out and becoming red and sore. I tried eyedrops suggested by the contact lenses fitter but to no avail. I now just wear glasses with a plain glass lenses for my left eye, with a 'normal' level prescription for my right eye.
I must admit not to having taken much notice about the condition as I had been led to believe that it is something that I would just have to live with if I couldnt use contact lenses. Having found this site recently I have realised that there are other options available and as I am due to go for my yearly checkup in January I was wondering what options I should be asking about?
I realise that different options are available for different people and conditions but I admit to knowing very little about my kerataconus - Its just something I have to live with - but would love to have the option of not having to wear glasses, esp as wearing glasses can be a pain in neck at times with my hobby.

[Andrew MacLean]

Libz

Welcome to the forum.

Firstly, there are all sorts of new lenses on the market now, and it may be that one of them will suit you where others have failed.

Secondly, and although I am not an advocate of this treatment, you might ask about C3R.

Then there is the option of INTACS, some users of the forum have found this a great help.

Then there is the end position of the corneal graft.

Do discuss these and whatever other options your ophthalmologist suggests. it may be that you are not a suitable candidate for any of these, but the only way you will find out is to ask. Remember, even if your ophthalmologist is seriously encouraging you to acccept a praticula treatment, the decision about whether to go ahead lies entirely with you.

All the best

Andrew

[Lizb]

Well I went for my annual check up today and am now wondering if the registrar I saw today actually knows anything about keratoconus. Had a corneal topography (sp??) and then went into see the registrar. Asked the registrar about what my options are and I was told;

1. Spectacles
2. Contact lenses
3. Corneal graft


When i asked about intacts he didn't have a clue what i was on about, so i got out my print out (luckily had printed some info from this site off) and gave it to him. He then asked where i had gotten the information from, so i explained and said that I had thought I had seen someone on here had received treatment at a Manchester hospital. So he has said that he will write to the consultant at Manchester about me and see about getting a second opinion from him.

Sorry needed to vent. I am not hopefully of getting a referral to Manchester anytime soon but does anyone know of anyway getting a quicker referral to see someone at Manchester. I am not due back at Royal Preston Hospital for another 12 months now.

[Andrew MacLean]

Venting is what we do best here. Actually, it is entirely possible that your registrar was not entirely au fait with keratoconus. In Glasgow we have a number of consultant teams that specialize in the cornea. Other Ophthalmologists specialize in Glaucoma, diseases of the retina Macular disease etc.

It is good to know that information from this site proved helpful. In the end, though, it may be that the old fashioned options will prove best.

Every good wish.

Andrew

[Lynn White]

Liz

To have any influence on your referral you need to talk to your GP. Who is your contact lens fitter? He/she may be able to help you out there as well.

Intacs and cross-linking have a slower uptake in the NHS than privately, so provision will be patchy across the UK.

By the way, what is your hobby?

[Karl R]

Mmm...seems to me that your registrar does not keep up-to-date with the NICE guidance. Intacs has now been approved for general NHS use.

St Paul's in Liverpool have also done the Intacs procedure and they have 2 consultants that I know of who are licensed to do the procedure.

[Andrew MacLean]

Just a general health warning to anyone living on the Cletic fringe: NICE (National Institute for Clinical Excellence) uses the word "National" to mean "England and Wales", or is it just "England"?

Confused? You don't need to be if you live in England.

By the way, before you conclude that the different provision in each of the four nations is a result of recent constitutional changes, let me assure you that this were ever thus: from the beginning of the NHS, the Scottish Home and Health Department was separate from the Ministry of Health in England and Wales.

[Matthew_]

That is indeed England & Wales.
Good luck, Libby. I think getting a referral is a great idea. It worked for me when I was stuck in a rut; it opens out all the options.
Good Luck

[Lizb]

My optician is where I was being fitted for contact lens (Broadhurst Opticians, Preston), after being referred to from RPH. I dont get fitted for contact lens anymore due to being sick and tired of having sore eyes everytime I tried contacts (went on for about 5 years).

So do i need to get my GP to refer me to another hospital, rather than having the registrar at RPH being able to contact the other hospital for a second opinion?

My hobby is motorbiking which glasses are a pain in the a*** for, having to take glasses off before putting helmet on or taking it off, then putting glasses back on. Glasses also tend to get twisted/misshapen in a crash helmet due to the fitting of the helmet. Yeah I know that intacs or other options might mean that I still have wear glasses but it also means I might have a chance of wearing contact lens as an alternative.

[Andrew MacLean]

Why not ask at your present hospital to see the consultant, and if you are not satisfied with the consultation ask for a referral to a more specialist unit? Not all hospitals have specialist teams that work on corneal diseases, smaller hospitals would have a general ophthalmology department, but most of their expertise will be in routine things like cataracts.

Andrew