Eye Treatment Centres

[pally]

Hi, I'm new here and this is my first post. I learned I had KC eight years ago when I was 16. I Have KC in the right eye and my left eye is OK with glasses. We tried all the lenses at the Birmingham Eye Hospital and I finally decided I could live with just my one eye. They had offered a corneal transplant but I decided to wait.

I may now need a corneal transplant in the right eye as it is getting thin. I have an appointment again next week at the Birmingham Eye Hospital after many years. In the intervening years I had annual checkups at my local hospital in Warwick.

I just want to know what other good centres are there in the West/East Midlands region. Is it best just to go to your nearest centre as there will be many post op visits ? Is it worth doing it privately so you can chose the surgeon? Are there any key questions that I should be asking the specialist at my next appointment ?

I haven't managed to read all the posts maybe the answers are already there somewhere. Reading other peoples experiences certainly helps so keep up the good work! Any comments gratefully received.

[rosemary johnson]

Hallo, adn welcome tothe forums.
After a graft,t here will be plenty of follow-on appointments - the precise number/frequency depend on the medical team, and on how well it heals and settles.
How much that might influence your choice depends on how you get on with travelling - like, do you have a friend to drive you, how happy you are on public transport, etc.
One question you certinaly ought to ask is about new developments in contact lens technology - if you haven't explored the lens route for several years, you may find there are now new types of lens available that didn't exist when you last tried, and that might work for you now.
If your cornea is now "thin", then it may be too late for CXL (though you might ask this), but have youa sked about intacs?
Once you have a graft, you can never turn the clock back and un-do it.
Rosemary

[Andrew MacLean]

Hello Pally, and welcome to the forum.

I don't have the information you need about clinics in the West Midlands, but I am sure that others will. Rosemary is right; once you have had transplant surgery there is a life-long career of visits to clinics so that they can monitor your progress.

We have a local group in the West Midlands. You can find out about their activities in the WM area of the forum

viewforum.php?f=7

All the best

Andrew

[GarethB]

Pally

There is the University Hospitals Coventry and Warwickshire in Walsgrave, Coventry or there is an eye unit in Solihull (this was in the news February 2008 as they are running a CXL trial).

Birmingham Eye Hospital I think is where the hospitals in the West Midlands send you if they can't do anything to help.

Try contacting Matian Bargery who is the West Midlands Group co-ordinator.

Regards

Gareth

[pally]

Thanks you all for your advice.

I will ask about CXL, if only for the "good eye". Is CXL available on the NHS ?

Good point about the lenses, It has been 6 or 7 years since I tried the hard contact lenses. I think my problem will be the thinning of the cornea. I got on alright with just one eye and would be happy to carry on as before. The transplant therefore might be inevitable. The other reason to sort out the KC eye is in case the good eye deteriates in time. hence worth considering CXL for the good eye.

I know Marion at the WM group and have been to meetings.

Once again thanks for your help.

[Andrew MacLean]

CXL (sometimes called C3R) is available in some places on the NHS. Why not ask to be considered for the Solihull trial? You will not have committed yourself to anything, but will have an opportunity to talk about potential benefits and disbenefits with someone who maqy be in the position of offering the treatment.

All the best

Andrew

[pally]

Andrew, you mentioned the Solihull trials. Which hospital is carrying out the trials so that I may enquire.

regards

Pally

[Andrew MacLean]

Not too sure: your GP would be the best one to ask, or your hospital ophthalmologist.

The Report came from the BBC http://www.bbc.co.uk/midlandstoday/. Gareth (on another string) shared the news:

Local news today ran an item on Collegen Cross Linking (C3R), the item can be found under top stories (to the top right) of http://www.bbc.co.uk/midlandstoday/ or if it has moved, click on more top stories again at the top right of the page and look for Eye op 'Stops' Blindness.

Prof. Sunil Shah of the Midland Eye Unit, Solihul will be conducting clinical trilas on 50 NHS patients, at a guess these will be patients already under his care.

There was a slighy boo boo in that I asked if they could give the Support Group web address but my e-mail to them had my home number on too which is on my work e-mail

Hopefully all those who have called me tonight got the information they wanted regarding the group and what we are about

Regards

Gareth

viewtopic.php?f=1&t=4143

All the best

Andrew

[pally]

Thanks Andrew, I am seeing the specialist tomorrow and will enquire. The BBC report on the C3R trial was broadcast around Feb 2008, anyone know how the trials got on.