Keratoconus - Eye Pain - need some thoughts/advice

[Rob]

I agree with Ali they rush you thru the clinic so quick you never get a word in about the pain and even if you do get a word in they rush in and out of the room so quick you never get a answer or an opinion . My pain issue seems to be exactly what you are saying to the tee . Rob

[Andrew MacLean]

Rob

Welcome to the forum! Like you, I found one of the most positive experiences in my KC life to be the realization that I was not alone.

Do you have any idea about a date for your cornea transplant?

Andrew

[Rob]

Yes Andrew i will have my transplant on sept 11th also my birthday . So hopefully a good birthday present .

[Lynn White]

Hi Rob

Thanks for your input - it does help others to know that they are not alone with pain!

You are quite right about the experiment, it could help other people to understand where you are coming from! Much of this sort of pain in KCers is due to the complete imbalance between the two eyes. The focusing system is trying to make sense of conflicting, distorted information coming from each eye and its very common for people with KC to have one eye that see better than the other. Since this often comes on after the visual system has hard wired itself, the brain cannot learn to simply suppress images it feels do not match between the eyes and the focusing system struggles to try and compensate.

This is all made more difficult by the fact that many jobs nowadays rely on computer input. Its like doing a job that entails running up and down stairs all day with a damaged knee!

Good luck with the transplant!

[Andrew MacLean]

I was just looking over the contributions to this string. I was alarmed to find that more than one person here has an experience of being 'rushed' at a clinic.

I go armed with questions all written out on a spiral back notepad. I make absolutely sure that I ask all the questions I have before I leave the consulting room. Sometimes the answer might be, "That would be a question for the doctor," and that would be okay. I just transfer that question to the list of the ones I have to ask the doc at my next clinic.

But, that said, I should say that I have never found an optometrist unwilling to give a bit of extra time to make sure that everything that she or he can say has been said in answer to the points I have raised. Maybe I am more assertive than others, and maybe I don't put up with any attempt to bamboozle me with the use of technical language. I have been known to say something like, "That's an odd way to use that word. What exactly do you mean when you use the word in that way?"

Neither have I ever come across an eye doc who did not want to talk to me about my condition and the sorts of decision that I was having to make about the management and treatment of my condition.

Andrew

[alison falshaw]

Hello Folks,

Apologies that I havent logged on in a while!!

Yes Rob, it is so so reassuring to know that you are not alone in your suffering and to finally realise that you are not going mad and imagining the pain.
I can say that this site has truly helped me in the past few months since I found out it existed.
I was diagnosed at my local eye dept around 12 years ago and to be honest I was never given much information and just kind of got on with it - I always knew that the only cure as such was a graft and something that was only done as a last resort. My annual checks up with the consultant have always been rushed but my regular appointments with the opticians at the same hospital dept have always been good - although until they suggested surgery a few months ago I never really asked any questions as never thought I was a candidate for surgery. So hence I just ploedded on and around Sept last year, having struggled with rgps to get a comfortable fit which gave a good level of vision they suggested surgery. it was then that I really thought I need to know a bit more about KC. I found this organisation and never before have I had so many unanswered questions answered!!

I will update you with whats happened since I last was in touch with the site.
I have been off work for a couple of months whilst I gave my eyes a good rest and waited for confirmation of my intacs operation. The operation went ahead on 17th March - just two weeks ago.

I arrived at Sunderland Eye Infirmary for 7.30 am and was checked into the ward and made comfortable, visited by my the surgeon, drs etc and walked down to theatre just after 9am and was back on the ward all done for 10.45. I think the operation it self took around 1 hr - i remember the general anaesthetic being administered at 9.12 am!

Back on the ward I was monitored every 20 mins and given a few rounds of tea and toast and basically allowed to recover in my own time. At approx 1.45pm the surgeon came to check on me and to examine the eye. Good news that it all went well and the intacs are correctly placed 60% down into the cornea.

At 2.30 I was discharged with a course of antibiotic drops and steroid drops to administer three times per day and to come back in 10 days time.

The eye was sore, very sensitive to the light and quite watery for the next couple of days. It was like being back in the days of really uncomfortable RGPS - I just wanted to rip it out but obviously couldnt do that. By about day 5 the watering had calmed down but the sensitivity to light hasnt - and hasnt much to date.
On the evening of day seven I drove in the dark for the first time and was disappointed that my night driving vision hadnt improved and that the halo effect was much worse than before the op - something that really worries me!!

On day ten I went for my first check up and drove upto Sunderland ok but the light sensitivity was still there. The consultant was pleased with the position of the intacs and asked how things had been. I told him about the light sensitivity and the night time vision. He explained that some patients do experience this at first and in time most patients do report that it gets better, however in some patients the night time halo effect doesnt improve and it causes them sufficient problems that the intacs are removed.....lets hope I'm not one of them. My vision had improved but only a little. Apparently they need to give it 6 months before they finally say that it stablised and this is the level of vision I will have.
There was still some inflamation around the stitch and asked that I come back the following week ( tomorrow) I'm still off work.....the headaches have eased but not completely gone. I am really worried that the headaches will get worse when I go back to work!! My employers are not very supportive, we dont have a HR dept to consult with ...I know for sure that I am going to have problems with the sunlight glaring on my pc.

What treatment do you have for your KC Rob???

[Rob]

Hi Alison your situation sounds similar to mine i am also off work waiting for stuff to all come in to play at the moment i am sitting at home with no RGP`s or glasse`s and about to recieve a new procedure called corneal collagen crosslinking with riboflavin this is a new procedure that just came to Canada about 3 months ago but apparently it has been used in Europe for 6 years according to my specialist it is the alternative to intacs and all it is , is 2 drops of the collagen and then you sit 30 mins under a UV lite and according to my specialist and from what is told to my buy a Toronto clinic that is doing this procedure is that it totally gets the disease out and strengthen`s the cornea so i am about to give it a shot on Apr 10 th .The other eye is in not so good shape and need`s a transplant which is scheduled for sept 11 th .So far this is all that has been done .
Rob

[alison falshaw]

Hi Rob,

Yes it sounds that we are in similar circumstances. I have heard of crosslinking.

I had the intacs in my right eye which was at the advanced stages of KC. We initally conisdered cross linking but the condition was too far advanced and the cornea was too thin. My left eye is moderate and once my right eye is settled we will proceed with cross linking in the left. Apparently it will slow down the progression - not sure if it will halt it altogether but in the main they are hoping that it wont get to the stage of needing intacs or transplant.

It is again re assuring that someone is going through the same as me. You will have to keep me posted on your cross linking. It's not long to wait another week or so.

Waiting around for everything to happen can be a bit sole destroying - I know but keep your spirits up - I'm sure it will turn out good. How come you dont have any glasses?

Ali