UK Keratoconus Self-Help and Support Association

I know I shouldn't probably question a consultant's judgement, but I'm beginning to wonder if I have been advised too early to have a graft on my right eye.
Earlier this year I had a hydrops in that eye (happened in March) which even now hasn't quite cleared up.
In May I was looked at, for barely 10 minutes, and told nothing could be done to improve my vision and they would put me on a list for a graft. Bear in mind at this time I still had the hydrops, which partly obscurs my pupil.
At that time I had very bad double vision, it was kind of diagonal, e.g. if you look at the dividing lines on a road, I would see a second set going off northwest.
Dramatically this double vision almost cleared overnight last week. Now I just see slightly parallel double, a bit like if you haven't quite tuned in your TV correctly.
I can now make out big writing (albeit with this slight double) but small writing is a no-no. However, if I hold writing close to the corner of my eye with hydrops (the corner where the pupil is clear) I can read fine. It's only when I move the writing away it becomes obscure.
I am wondering, when the hydrops has gone altogether, the small writing will also be visible.
I am also wondering if the slight double vision will go when the hydrops does.
I know it's easy to get excited (and I have been very down when the double vision was bad) about improvements, but I am wondering if a graft will now be necessary.
Sorry to have gone on, but I wanted to give all the facts. I'd welcome any comments!

Craig

Your consultant has seen your hydrops and the damage to your endothelium. On that basis, it is his job to make a clinical judgement about the need for a graft (if your endothelium is very badly scarred then it may be that a graft is the only way to restore useful sight in that eye).

Your consultant ought to explain his advice to you, but sometimes they think they have explained everything while the patient is left with more questions than when they began.

No consultant I have ever met has ever been annoyed by me asking questions. I usually take a list of them and make sure I get them all answered.

You could, quite properly, ask your consultant questions like:

Is the endothelium badly scarred?
What would be the prognosis if I did not have a graft?
What would be the prognosis if I did have a graft?
How long after a graft should I expect to wait before I recover useful sight in that eye?

(Note: the endothelium is the membrane at the back of the cornea. Its job is to operate as an osmotic pump, removing fluid from the stroma of the cornea. A Hydrops occurs when the endothelium ruptures and fluid flows from the eye into the stroma of the cornea, causing some inflammation and cloudiness.)

Never forget that you are in control of your treatment. Ophthalmologists usually like it when their patients enter into a partnership with them.

Andrew

In addition to taking a list of questions, it is also useful taking a relative or friend to take notes when the questions are answerd.

During a cinsultation and your eyes have been proded you can not always see to make notes and the notes you do make may be illegable afterwards. It is also possible for so much information to be given you never remember it all.

Another person whi can see clearly makinga note of the answer means you have an accurate account to go back to.

Craig, feel free to questions any consultant's opinion! - it is **your** eyes the concultants are pronouncing on, after all.
OK, I am not a consultant medic, and I haven't seen your eyes.
But taking 10 minutes to tell you, two months after a hydrops, that nothing can be done for that eye bar a graft does sound to me, errrrrm, shall we say, quick enough that the owner of said weye might well ask questions.
I've noticed from my hydrops that though the "cloud" manly cleared in a few weeks, the eyes took some months after the big ones to "settle" down properly.
SO it may well be that things have continued to settle down and improve after your May appointment. And it isn't impossible that things will improve a bit more.
What's also possible is just that your brain gets more adept at living with the odd visual effects you still have, and they'll worry you less.
The other side of this, of course, is that you'll get used to living with the vision obscured or doubled, so much that you'll "forget" that ctually there are areas you can't see too well, and you could get into a dangerous situation or have an accident because you're so used to your vision you don't realise you haven't seen something important in that dodgy corner.
o... please do ask lots of questions and don't take anything as gospel truth". ANd remember, if the consultant wants you to have a graft, he'll have to get you to sign a form saying you're giving **informed** consent.
Rosemary