Treatment just done...

[trippa]

Hi all,

Having been diagnosed with Keratoconus, I was initially angered by this, despite several visits to this well known high street optician, who shall we say, were happy to keep prescribing me with glasses and taking my money, despite my complaints about poor vision. Anyway, that's another story
I was initially unsure of where to go when and what to do when I found out I had Keratoconus, but I was put in touch with the Midland Eye Centre in Birmingham.
After seeing (excuse the pun!) Professor Shah and his team, he recommended the Collagen Cross Linking Procedure. I had the procedure done on both eyes, (although it was my right eye that suffered badly, but under the advice of the professor I had both done).
It has been nearly 4 months since the procedure was done, and I am very happy to report excellent results!
I am no way connected to the Midland Eye Centre, but the care and excellence in service I received was first class. I wasn't to bothered about how much I ended up paying, but I can safely say, it has been money well spent!
I don't mind sharing my experiences with others and feel that it is time I mentioned that there is hope for people like myself who have suffered,
I am also more than happy to share any details about the procedure etc if you wish, but I hope my simple story can help people who are in the same position I was a while ago.

[Andrew MacLean]

trippa

Welcome to the forum. It can be hard to learn that we have an eye condition of which we have never heard, but don't be too hard on your optician.

We look forward to getting to know you better in the days, weeks and years to come!

Andrew

[Anne Klepacz]

Hello Trippa and welcome.
It's good to hear you're pleased with the crosslinking. Do you still need glasses or contact lenses or has it actually improved your vision as well as stabilising the KC? We've had quite a few posts now from people who have had CXL done, but not many of them come back to tell us how things are a year or more after the procedure, so do keep us updated!
And if any members know of hospitals that are now offering CXL on the NHS or as part of a clinical trial, do let us know.
Anne

[Lizb]

Royal Liverpool (St Paul's Eye Unit) Hospital is offering Crosslinking with Mr Kaye's team for those in the northwest area.

[trippa]

Hi Andrew and Anne,

thank you for your kind words.
Yes it has only been 5 months since both procedures were done. I am now starting to wear Rigid contacts, but after the procedures were done, the team at the Midland Eye centre noticed some improvement in my sight.
I will still need glasses/contatcs, but will opt for contacts as I have worn glasses since I was around 13. I am now 27 but can safely say that the procedure has done me loads in terms of helping me with my life and getting to grips with the condition.
I have to say, I don't know why I left it so late to join the site, but it is better late than never. I guess my field of work leaves little free time...(Primary School Class teacher).

[Eileen1359]

Hi Everyone
My son Phillip is under Mr Kaye in St Pauls Eye Unit located at the Royal Liverpool Hospital. He is currently on the NHS waiting list for cross linking to try and halt the deterioration in his left eye. We have just received a letter today from Mr Kaye to give to his University which states that with glasses his visual acuity in left eye is 6/24. Doesn't mean an awful lot to me except that he doesn't see very much with that eye. Mr kaye said that it had deteriorated at a quicker rate than he had anticipated and hoped that cross linking would halt this.

Trippa - how did you find it afterwards. Phillip has been warned that he will be in some discomfort for about a week and will need eye drops and regular out patient appointments.

Glad to hear though that it seems to have halted your deterioration. Not sure though that he will give up his glasses as I think he finds his "comfort blanket" and the KC in right eye is so minimal wouldn't need a contact lens for that eye.

Eileen

[Lisa Nixon]

Hi Eileen, we're just back from St Pauls, stayed over for a few days in case Mike needed to go back. He had the CXL on Thurs, not very pleasant as it takes about half an hour under local anasthetic. Mike couldn't feel anything but he said it was wierd being able to see what was happening! He has antibiotic drops and some others which are supposed to soothe the eye a bit. The latter aren't having much effect. The discomfort is easing now but was bad Thurs and Fri. Mike's wearing sun glasses a lot as his eye is very sensitive to light. Still fuzzy vision at the moment but it's early days yet. We're back on Friday for a check up, will let you know how we get on

[Eileen1359]

Hi Lisa
Glad Mike is OK. Phillip got his appointment through for 30 December but we are going to have to re-arrange as he has exams at Uni the first two weeks in January.

Think the fact that Phillip will be able to see will cause him more stress than anything as he is really scared anyway. Don't think I will tell him this one. Hope the check up goes well and that it will have been a success
Regards

[Lisa Nixon]

i def wouldn't tell him. Mike said it was wierd seeing the surgeon etc more than anything. He had a nurse holding his hand - she just sat next to him throughout, he was quite embarrassed but think he was glad she was there really! Just seen him today and his eye is much, much better. Less sore and less blurred. We dropped some shopping round as he can't drive at the moment - had a bit of snow but have a 4 x 4 so able to get to him ok!

[Eileen1359]

Am so not telling Phillip as he really doesn't want to go through with it. He stupidly went on You Tube and watched a video of what they do. Yep he is a computer geek!!!

Has Mike had it done on his better eye? Phillip is getting it done on his worst eye and without his glasses can't see anything anyway with everything being very blurred. Think apart from the pain the not driving is going to be the worst part for him. He so loves driving.

No snow for us at the moment and hopefully not at all. Extremely cold though and hard to get warm.

Take care
Eileen