Hi Grim
I didn't reply initially to your post for a couple of reasons. The first is that old enemy, time ! There's just never enough of it unfortunately. Quite often I''ll read something and want to respond to it, but not having the time to do so straight away have to come back to it later. I do hope you'll forgive all of us who contribute here -- on occasions we don't get the chance to get back to someone immediately. We're all just volunteers too -- we do wish we had the luxury of paid support services, that would really make our day
Everyone who contributes on this Forum does so out of the goodness of their hearts. It restores my faith in human nature that so many are willing to do this for no other reason than to provide assistance for those who might need it.
Secondly, related to the first, any way forward for you and anyone else in your situation isn't that simple to document. As Anne has already rightly said, and what Jez is actively practicing, the eye heals slowly and you have to let it. Annoying though it may be, it responds in its own timescales, not the ones we might want ! So it would be wise to follow the advice you've received from the professional treating you -- you will need to wait several more months to let the healing process take its course. You are certainly not waiting in vain as you put it. No responsible clinician would do anything until at least 6-12 months post-procedure had elapsed. And the more time the better. You need a stable state from which to work from where the eye is concerned. Attempting to have follow-up treatment before the implications of the last treatment are know is a recipe for disaster. So you’re getting the correct advice from the professional concerned. That does not of course make it any less frustrating...
That said, the time is definitely right to think about what might be necessary in the future and start having those dicussions. Obviously the natural question in the back of your mind -- which you quite rightly want an answer on -- is "but what if it's not okay ? what then ?" In other words, if post-crosslinking, suppose your vision isn't what you'd want it to be. You do have several options. These include:
1) Glasses or lenses. Have you had an optometrist attempt to get a refraction based on how your eye is now ?
2) Implantable contact lenses or Intacts (these may not give full correction if you’re left with a high degree of long or short-sightedness or astigmatism but they may improve the shape of the eye assisting with getting good results with glasses)
3) Further procedure(s) to improve the shape of your eye. Is this something that you’ve discussed with the ophthalmologist who is looking after you ? (if you’re not sure what you’re going to have to ask about, let me know, I can provide some more information for you here)
4) A graft
If you can let me know what you’re already covered in the clinic, we can step through what’s not yet been put on the table. Doing that will help to show that there are things which can be done and you’ll not simply be stuck in an unsatisfactory situation indefinitely.
One final thought. Tempting though it is to get resentful, both about the disease process we’re dealing with and the on occasions less than successful outcomes we end up with from the professionals treating us, try if you can to not fall into that trap. When you undergo an interventional procedure there’s always a chance that things could go wrong or not turn out the way you’d hope. When they wave that consent form under our noses and we sign our name on it, it’s not done for fun. The warnings it contains are there for our information and protection. Because not everything the medical profession does is a guaranteed success. We all go into these things of our own volition. Somewhere in our minds we know that, so when we end up not really where we want to be, we either blame ourselves or blame the professionals as a proxy. If you can get past that – and it is definitely not easy and it certainly is understandable – you free yourself to move on and make your next set of choices. That sort of "inner healing" takes as much if not more time and effort from the individual as the physical side. Those annoying "if only I had..." or "if only I hadn't..." 's seem to have a life of their own sometimes.
Best wishes, fingers crossed that things sort themselves out over the next few months, but as I say do let me know if you want more detail on the potential “next steps” we’ve covered.
Chris