A confusing consultation.

[David M.]

Hello everyone. This is a long post so please move on if you wish, though I've tried to abbreviate it a little. I just thought I'd share my recent experiences.
Briefly, after 12ish years of stability my KC began to progress in my left (good) eye again and so after much ado I recently got myself into a NHS eye clinic.
I start off by telling the doctor why I went to my GP re: my KC for the first time in a long time; that I felt my vision has gradually deteriorated recently. When he asked whether I've tried contacts I told him about the RGP's I was fitted with when I was first diagnosed. The problems I had with them which forced me to give up on them. I then asked him what he thought of INTACS and C3-R, (due to this site I've been watching the utilisation of these with interest) and this is what he told me.
Firstly my right eye. He said the severe KC I have cannot be treated with INTACS and/or C3-R. I was fearful of this as from this site I'm aware your vision has to fall within set parameters for INTACS to be effective. He then shocked me by saying that the only treatment for my right eye is a graft and he would be willing to put me on the waiting list there and then. I was shocked because the last thing I was told years ago is my right eye was not suitable for a graft and as far as I can make out my KC is still stable in that eye, so why would it be suitable now?
Now my left eye. I have moderate KC in this one and so I again asked about the INTAC/C3-R. Again he said I was not suitable but the only reason he gave was that its an invasive procedure. He recommended soft contacts, so I reminded him of my lens intolerence I'd experienced years ago and thats why I was looking at INTACS. And this was his reply.
I could have INTACS in my left eye if I wished though they would be of dubious efficacy. I could find any consultant specialising in INTACs and they would fit them for me. He implied the reason for this is money. Consultants specialising in INTACs will always recommend INTACs in preference to other possible treatments.
He also then told me that C3-R would not work with me as it is only effective for people exhibiting the very earliest stages of KC.
He finished by saying if I'd like to investigate the INTAC treatment for my left eye further he would refer me, as an NHS patient, to a specialist in Leeds who does INTACs and who is also looking at starting C3-R 'in the near future'.
So has anyone here met a consultant who gave out contradictory advice? He didnt seem interested in trying to explain possible reasons why my KC has just started again after 12years, or even that it had. (I realize that it would be difficult, but he could of tried). Recommending expensive contact lens for an unstable eye to a student with proven contact lens intolerence, and discounting INTAC treatment because he believes its to invasive then referring me to an INTAC specialist. He asked me if I wanted the referral to the specialist but was quite obviously not happy that I took the offer to get a second opinion re: INTACs. If I was someone else who had accepted his explanation I'd of left that room with alot less hope than when I went in.
So a few questions. Any INTAC people who read this first.
Did you get the impression that you were 'pushed' into having INTACs by the consultants who treated you?
C3-R. I got the impression this could be used to slow the progression of KC that is a bit more advanced than early stage KC. Am I wrong?
And do you guys think I've done right by choosing to get a second opinion on INTACs? I did so because I basically didn't believe what he'd told me because of what he'd already said. I wasn't sure whether it tallied with what I've read on this forum. People here seem very pleased with INTACs so I'm assuming it's a treatment with merit, which is not what this doctor implied. Also, from reading about it, the INTAC procedure is hardly an invasive technique in the traditional sense. So by holding back on accepting the corneal graft waiting list offer I've probably pushed myself right to the back of the queue for getting appointment again.
So I hope this post hasn't lost it's way. Before anyone asks I've delibrately omitted the name of the consultant and the hospital I went to. I know INTACs aren't yet offered on the NHS so that offer of a corneal graft would still be of use.
Thanks for reading.
D.

[Andrew MacLean]

Sounds like a good consultation.

1 Nobody really knows why KC stabilizes and then starts progressing again.

2 Your right eye, the advice you were given years ago may not have been right. If you are now being offered a graft it may be that the time has now arrived.

3 Intacs is a new procedure and has some good reports and some bad. In Glasgow years ago my own Ophthalmologist started off very keen on this procedure, then went cold on it when some bad results were reported, and is now again interested in it as an early stage intervention for KC.

4 If your cornea thickness in the left eye has deteriorated to a point then neither Intacs nor C3R would be effective. By all means have a second opinion from another Ophthalmologist; this is your right and should not affect your entitlement to being considered now for a graft in your right eye.

All the best

Andrew

[GarethB]

12 years ago I do not think a partial graft (DALK) was available), so if your KC is well to one side then a penetrating graft (PK) is not suitable because the risk of rejection is so high. Therefore if this is the case, 12 yeasr ago the advice was correct.

A DALK graft carries a very low risk of rejection so can be performed closer to the cornea margin and with this advancement in science the eye once again becomes suitable for a graft.

It may be there is no contradiction as such, just an advancement in the way the graft is done; PK or DALK.