When to consider a graft?

[Barney]

First I should say hello because although I posted a few times on the old board I've never posted on this shiny, new phpbb one.

I'll be seeing a surgeon at Moorfields for the routine review next week and that had me wondering about your views on when is the appropriate time to consider going the surgery route.

I had a transplant in my left eye a few years back that was stunningly successful and that inevitable colours my own view. Slightly confusing is that every surgeon I see has a different opinion.

My left eye was the worst but since the transplant I can see the full eye-chart to the bottom line. With my right eye I can see only about four lines though that flatters my real ability to see in the real world which involves more than just reading illuminated letters. In reality, I can barely read a number-plate with that eye at about 20 feet. (In both cases that's with a contact lens.)

So I was wondering how lucky I was to have such a good outcome for the eye with the transplant and, from the experience of others, how likely would I be to have a similar outcome for the other eye. Following on from that, how bad should the sight in an eye be before surgery is worthwhile which is really the decision I'm trying to make?

[Sweet]

Barney

Hello there! this is really a personal decision, and one that only you can make! I would say, that having been there once before, you would know what to expect and be prepared for surgery etc. On knowing when the time is right, this is completely your own choice, although i would suggest asking others for their opinion to help you to decide.

If you feel that there are other options open to you then try them out first and see what results you get. If you have tried everything, and have had no success, then that would probably be a good time to decide on surgery again.

I had a graft done three months ago, but my decision wasn't based on what i could, or rather couldn't see, as i have never had any real vision in that eye. It was more because my 'good' eye had suffered six months of problems and consequently a long time off on sick leave. To me it made sense, that what i thought was my good eye obviously wasn't, and that i should try to even things up before it got worse, in trying to make my worse eye the better one!!

So far i can't say if it has made any difference as it is too early to tell, but i feel positive that i have made the right choice in trying to improve my vision. I guess now, that only time will tell me if i made the right decision!

Take your time, think about it and ask loads of questions at the review. I'm sure that as you are the best person to advise about yourself, that you will make the right choice for you!

Sweet X x X

[jayuk]

Barney

Do you mean that with the transplanted-cornea eye you can see the bottom line?.....Is that corrected or un-corrected? If its uncorrected than I can tell you that thats a rare result......trying to repeat that in the other eye will be unlikely (but not impossible).

Generally, its thought and observed that the transplanted-cornea eye will need some form of correction be it contact lens or glasses.......

With regards to the other question, I think an individual needs to consider having a transplant when

a) they can no longer see to function in there everyday life
b) when they can no longer get adequate contact lens wear on a daily basis
c) they have exhausted all other options available ie contact lens
d) when the thickness of the KC affected cornea falls below 300 microns and vision is also severely affected

Hope that helps

J

[Barney]

Hi J,

No, that's corrected with a lens in each eye.

With good vision in one eye the poor sight in my right eye doesn't have a major affect on my life, I can see well. But at the same time it doesn't contribute anything to my vision either. I obviously couldn't drive with just my left eye if something nasty happened.

I really wondered if there were any hard figures for what could be expected? What quality of sight do most people achieve and what proportion of people have major problems? Is there any way for me or anyone else to calculate the odds for a major improvement of their present vision rather than just guess?

The former senior surgeon at the External Diseases dept at Moorfields expressed the view in a private consultation that as I was likely to see better with a transplant than without then it made sense to go for it. Even though for me the first operation was a breeze without a single problem and the outcome was amazing I still sense it's a little more complicated than that. As Sweet rightly says it's ultimately a personal decision but without hard figures I feel I'm flying blind so to speak.

I'd really like to make the decision on how the numbers stack.

[jayuk]

Barney

Sadly the figures we all have been fed over the years are absolutely USELESS. There's such a mass distortion of the truth of Graft outcomes that its unreal.

Added to that, is the fact that there all based around the Consultants perception of what is a successful Transplant outcome; which is different to what the patient would constitute a successfully outcome.

What I have seen now, is that individual Eye Units around the UK are starting there own unit-specific statistics; or rather I have seen 2 which are doing this (one is over 10 years the other over 5 years).

You mentioned about driving with one eye?.I have done that at various stages of my KC, with no problems what so ever....infact I have continued working with vision in only one eye with no issues what so ever.......

I would also point out the potential risks of having two Full Penetrating Grafts in both eyes......mainly around Rejection. Whilst the chances of this does reduce over time; this can creep up at any stage during your life........with that in mind you may also want to explore Partial Grafts if the eye in question is being considered for a graft....this drastically reduces the chances of rejection....

And finaly.... the Consultant!....It really does matter; in my opinion, WHO does the procedure....there experience, knowledge, and outcomes are extremely important! A good initial graft can be rendered useless if the consultant has no idea on how to manipulate the Sutures!...I have heard of soo many patients whom have had to be regrafted or have had a very bad experience during the suture removal as they were removed without any reference to a corneal topography..and manipulation only on demand.....

hope that helps

J

[Barney]

To be honest, I don't think I've ever been given figures except in the vaguest terms. Perhaps I look as if I couldn't manage them.

What I would like to have though are figures for what proportion of patients achieve a specific level of vision after whatever correction is necessary and at what level of current vision is there a significant risk of vision being worse after a graft.

I'd agree that being told that the outcome is "successful" in 95% of cases, or whatever I was told, isn't much help. Without any meaningful figures there's no real basis for a decision.

[Sweet]

Barney

Hello again! I do understand what you are saying about figures etc, it would be really helpful if we knew what we were letting ourselves in for!

I am a little lost here though, and guess i need to ask. As you have already had a graft, and do see very well with it, how come you are so worried about getting the other one done? To me i would be questioning myself if things went wrong, or the whole experience was bad, but as you don't imply that am just curious as to what is different from the last surgery? Is it at a different place, or with a different surgeon?

I guess if i was thinking of getting the other eye done nothing would really change in my reasoning. I would still do it ONLY as a last resort, and only if i felt happy with the surgeon doing it and what he expected from it. The last operation would also play a big part on what i decide, as putting what you rightly said, it would certainly colour my views if i had gone through it before and what the end result was!

So good luck in your thinking, and hoping that you find the right choice for you soon.

Sweet X x X

[GarethB]

Hi Barney

In basic terms, a graft is considerd a success medically if it heals well (rejection free), eye pressure acceptable and the graft is clear.

The reality for us as patients is that if we can see the eye chart with sight correction enough to drive I suppose, then that is a success.

Successes where the patient can see 6/6 in both eyes is extremely rare, I achieved this for abou 5 years in the 16 years I have had grafts in each eye and now I feel I am paying the price for that success. Long story.

Despite this, with correction left eye is 6/6 and the right eye is about three lines away, but hopfully intime for christmas I should have new lens which will make 6/6. In the meantime I have retaken my Advanced Driving test and past The Police officer who tested me (and he trains the traffic persuit drivers) at the end of the test wanted to know why I was retaking my test. He could not beleive I could not see out of my right eye as currently can not wear a lens in that eye. Showed him the medical proof and he said he was now convinced drivers with one eye are evry bit as good as drivers with two!

Despite one success, I personally feel grafts should be left as a last resort, one great success may be down to chance or luck depending on your point of view. Two great successes are bloomin marvelous. Once the lens options are exhausted I still think the graft is the way to go and is relativly risk free all things considerd.

Word of caution that I was not aware of 16 years ago and that is there has still been extremely little research conducted on graft quality 10 years post op which you should bare in mind.

Regards

Gareth

[Barney]

Thanks Gareth and Sweet.

Yes the previous outcome for me was very good but I've no way of knowing how likely that is to be repeated.

I had laser treatment on my poor right eye a year back to remove scarring. That helped but I can still only see around four lines or so with it. Consequently I'm effectively just using one eye.

The question for me is how good are the chances of seeing better and what could be the worst outcome. Obviously it's quite possible the people who use these boards have been less lucky and possibly why they have more problems they need answers to.

What was that long story? Seem to remember Alan Sugar saying that was his secret of success: "I know the upside, tell me the downside."

[Lisa Nixon]

10 yrs post op is scary as I've taken the plunge and am about to go for graft on 2nd eye on Thursday. Ungrafted eye now needs a lens and glasses to enable me to see but it's still blurred and I am getting more and more reliant on the grafted left eye - good vision with quite strong glasses prescription. I feel it's a gamble, but think it's one I'm going to have to take - still not able to work, just teach riding for the disabled once a week on tuesdays and I've had to miss some of that due to right eye being sore and not being able to get the lens in. Left eyelid post op often droops when its tired, anyone else experienced this - it makes me look a bit odd, but being able to see better is worth the the occasional funny look! It's hard to make the decision Barney, but I feel at 43 I want to do things now - I could be dead and gone in 10 yrs! (hopefully not though!)