UK Keratoconus Self-Help and Support Association

Just looking for some general advice - I have been struggling with Keratoconus since 1993 but its only very recently that, over the past 10 years, that things have deteriorated - more so in the left eye but the right eye has it as well.

Eventually now find myself under the care of Mr Srinivasan at Ayr Hospital and have been placed on the waiting list for a cornea transplant for the left eye. A bit apprehensive about this given its a major operation. Waiting list on the NHS is up to 7 months I'm told so I am currently thinking of going private - against my principles but your health is your wealth after all.

Anyway - advice I am looking for - is it the case that if you choose to go private you can pay for a better quality cornea as opposed to taking whatever comes up on the NHS? That sounds a bit up myself but the question has come to mind. Also, I work from an office but do a fair bit of travelling about between Scotland, N Ireland and N England using a laptop most of the time - post graft how soon do you think I will be able to get back to working the laptop and driving?

I've got to say - Mr Srinivasan has been great so far - he has also suggested cross linking for my right eye - not sure if both can be done at the same time ie grat in left and linking in right - any ideas?

Hello David and welcome to the forum,
The cornea banks that provide corneal tissue for NHS patients screen the donated corneas very carefully and reject quite a few that are unsuitable to use for transplant. So I don't think it's a question of 'whatever comes up on the NHS'! (I had corneal grafts on both eyes on the NHS 26 and 24 years ago which are both still going strong, so I certainly can't complain about the quality of the corneas I received). Several people here have had transplants done privately so may have other comments, but the main reason for going down that route seems to be getting the operation sooner.
Personally, I wouldn't choose to have both eyes treated at the same time as you'd end up with both eyes being effectively 'out of action' for a while, not being able to wear a contact lens in either eye. Recovery time for CXL is shorter than for a transplant, but seems to vary quite a bit from a few weeks to some months in terms of quality of vision. And if you want to get back to work after the transplant, you need to be able to depend on the other eye! Getting usable vision back after a graft also varies a lot from one person to another. Many here have gone back to work after 2 or 3 weeks, but if your work involves a lot of driving you might need longer. Or you might be able to renegotiate your duties for a while so that your work is less demanding. I'm sorry not to come up with clearer answers for you, but as you probably know by now, nothing about KC is predictable!
If you'd like a copy of our 2009 conference DVD which has good talks about corneal transplants and about crosslinking, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put one in the post to you (Mr Srinivasan was one of the speakers).
All the best
Anne

Hi David

Sorry can't help much on the private question ,exept to say I had my graft 3 weeks ago under the NHS and I was very happy with the service provided ......I have to say I was lucky in only having to wait about 3 months for the opperation .The whole procedure wasn't half as bad as I was expecting and I was back to work within 10 days although it was light duties only and I do have good vision in my right eye .I was driving within 3-4 days and using the pc pretty much as I felt like it as soon as I was home .


All the best

Rob

Hi

For me the decision to go down the private route was purely based upon the expertise of the surgeon. I have a relative who had treatment and corneal transplants in both eyes which were botched by the NHS. Subsequently they footed the bill to send her to East Grinstead to see a specialised who did his best to repair the damage. In view of that, I simply wasn't prepared to put my sight in the hands of the same individuals. I therefore opted to go down the private route to see a specialist who has an excellent reputation. After a series of tests he was able to say definitively this is what's wrong and this is what you need. Aside from having utmost faith in the surgeon, I also discovered the important of having state-of-the-art equipment e.g. Femtosecond laser – I was able to establish that this would aid the healing process. In fact, I went for a walk a few hours after having had surgery and experienced no real pain to speak of.

PS: I've had crosslinking in both eyes and a wedge resection with auto lamellar keratoplasty (surgeon said the procedure was exactly the same as a transplant, but using my own tissue).

Really think the decision should be based upon a number of factors which includes expertise of the surgeon, equipment, etc etc.

Regards

Caroline.

Hi,
I live in Fife and yet I drive 2 hours each way to see Mr Srinivasen - I can only say good things about him . I had my right eye CXL by him privately in Ayr at the Carrick Glen Hospital and was wearing lenses again in about 4 weeks.

I am also due for a transplant and it is being done by Mr Srinivasen - not only at my request but also on the advice of the consultants in Fife so have said he is the best there is at this type of surgery. I have opted to go private as I have insurance so it will be done at the main hospital in Ayr (better facilities than Carrick Glenn for this op)

So I'm in a similar boat to yourself with the graft but any advice you want about the CXL just ask. Mine was done 6 months ago and my cornea has flattened a little since then and my sight improved a little so a good result. My KC was only diagnosed 14 months ago and has progressed very quickly so having a slight improvement at the 6 month stage is a huge result for me. Over the same period my left eye cornea has got so thin I had an acute hydrops that perforated

Good luck!