Corneal Transplantation - A Cure? a piece from my local pape

[Susan Mason]

Hello all

Have just had a call from a friend who has been reading a copy of our local evening paper.
Aware that I have KC and that of late I am seeming more debilitated she was over joyed to read she had found me a cure.

Here is a link to the piece:-


http://www.thisislancashire.co.uk/lanca ... HTOP0.html


I myself am under the care of The Royal Bolton Hospital and have just recently been 'offered' surgery in the form of a Deep Lamellar Keratoplasty however I am a little cautious.

I was not under the impression that it was a 'cure' and wouldn't say the hospital had suggested it would be either. They showed much positivity in the procedures however obviously would not make any guarantees.

any ideas?

Susan

[Sajeev]

Hi Susan...If there was a cure...then what is the great problem in KC....they talk about Corneal graphs being up to 98% successful that means that there is only 2% with a problem?!?!?

What is deemed as successful?...it should be the patient that decides if a graph is successful for them or not...not because the doner button just sit's in the hole made for it, on day one of the surgery???...this is what they call successful???

Is it successful if you still need a contcat lenses to correct your vision...when contacts could not be tolerated before???

What is the average life span of a graph?

LOL...sorry susan these question are not for you...I think they are just questions the average KCer thinks about...and this is why other new treatments are growing fast and spreading around the world!...as there is the need for them!

Thanks for sharing though:)

[Lynn White]

Susan

The article is telling in that it says Eddie's eyes became so bad a transplant was considered.

What this means in doctor speak is that a transplant is risky and will only be considered if other options are not working satisfactorily.

You see, rejection is always on the cards and if you take a mild case of keratoconus and transplant it, if the graft rejects, then you are worse off than before.

If you wait until things are worse before you transplant, then there is a risk that the cornea is so unhealthy it won't support a graft properly.

Its the same with any transplant - heart, kidney etc.... Its an extreme option and only done when all else fails because you can't go back and undo it.

There are other less extreme ops being pioneered at the moment but again with ANY surgery, once done, if it goes wrong you cannot go back and undo the procedure so that you are where you were before you started.

This is why the unit is being rightly cautious with their advice.

All surgery is a balancing act - pros and cons have to be weighed, risks assessed. The unit you are with will give you the best advice they can and THEY are the ones you should be listening to! Only they can assess your particular case - any of us here can offer advice but we do not know your eyes as they do.

If you are not sure - then seek a second opinion from another surgeon who can again assess your eyes professionally.

Lynn

[Anne Klepacz]

Just a word of warning - you can't believe everything you read in the papers! It is NOT true, as the article implies, that once keratoconus is diagnosed, it will deteriorate to the point of the need for a corneal transplant. Only 1 in 10 of people with KC ever get to the stage of needing a transplant - the vast majority manage with contact lenses. And there are a number of options with lenses, as people on this forum will know, so while it may take a while to get the best one, most people with KC will NOT need a graft.
However, for those that do, it's also true to say that a rejection episode rarely means the end of the graft. Along with several others on this forum, I had several rejection episodes after my grafts, all successfully treated and my grafts are still going strong after nearly 20 years.
Anne

[GarethB]

Hi Susan,

I would echo what has been said here so far.

But I disagree partly with some of what Sajeev says. The reason is that if the success is left to the patient, it is based on their expectations of what they think the graft will bring to them which comes down to how they were 'Sold' (for want of a better word) the idea they needed a graft. For me the reason was 20 years ago, lenses would no longer fit on my eye, the curvature was so great so I finsished A levels registerd partially sighted and waiting for a graft. For me the succes was that the graft took and I could see normally with glasses which is all I wanted to be able to do. My expectations were not high to easily fulfilled. Interms of correcting the KC at the time, the graft was the cure.

I know some now who expected a lot more from a graft in that once the stitches were out, they would have 20:20 vision within 12 months of a graft. Was this what they were 'Sold' to have a graft? I do not know, but these are obveously high expectations.

Succes when quoted by doctors as far as I am aware is that the graft has joined properly and is functioning. The quality of sight is not always quoted. There is also the fact that once the stiches are taken out of the graft and sight can be corrected with glasses, theye are never heard of again as the patient gets glasses from the high street optician who is usually unaware that a graft has taken place. The peopl I know who have had grafts are from the support group and I think we are the minority (please correct me if I am wrong). The only time I am aware of specialists seeing people long term after a graft is if there are issues such as rejection or in my case a part of the cornea the graft is attached to has gone keretenoid again and pulling the graft out of shape. If technology had not moved on in 20 years, I would be in need of an operation, but fortunatly sinc the advent of the Rose K style of RGP, my sight is restored.

I consider myself lucks as far as sight defects go in that for part of the day my sight can be corrected. The rest of the time I have copeing strategies so that for 99% of the time when I can not see, I lead a normal life.

I would still say that a graft should be the final option which may mean for some a long wait while all other avenues are tried even though they might seem demoralising at the time. This is just my view and others who have had to go through so much may well disagree.

Thanks for the link Susan, it was good to read.

Gareth

[Lynn White]

Ahhh Gareth....

You have hit the nail on the head!! One of the problem with current refractive laser surgery (for "normal" eyes) is that patients think a success is they can see as well as they can with contacts or specs after the op. The surgeon (and I quote from several) regards a sucess as seeing much better unaided... not seeing as well as with their specs. Big difference.

However, many people get the impression it's going to be as good as with glasses and I am not that sure that these laser centres explain it isn't.

As you say - success is in the eye of the beholder.... (ooopsss... bad pun!!)

Lynn

[Sajeev]

Hi Gareth,

Basically i don't know of your situation and i was not talking about your situation as i don't know about it...and there are always exceptions to the rule..

If you look at many studies you can see the results of graphs (i posted one not long ago which in the article it said thats why they are trying to develop artifical corneas!)...and there should be some measure put in place...by us and by people who are looking after us?

I just think if i did not find out information such as i have i would have thought 98% was a great success rate...instead of knowing that it could very easily be "jumping out of the frying pan in to the fire"...as like you said, it should be the last last option and i think everyone agrees with that...but figures like 98% makes it seem to someone who have not educated them-self would seem that it should not be the last last option...

Basically now-a-days there is more options.because of what i have been talking about...otherwise these new treatments would not exist...as its a well known fact and you agree to this yourself that transplants are something no one wants and so should be the last..last option...

Sajeev

[GarethB]

Sajeev, I will admit to some extent playing devils advocate by way of stimulating the thought process as you have posted some good medical links.

I will say however, having had to review some scientific papers before they are published and sent them back as unscientific ehen I have questioned the data and asked to see the full research. Unfortunatly there have been quite a few where only the good data has been published which is very misleading. It is because of this that the FDA and MCA have to regulate the medical business to protect us the patients.

A good example is some origianl work done many years ago that first suggested fat is bad for us based on studies across the world. Infact if the full data is reported there is no conclusive proof that fat is bad!

Keep posting the stuff however so we can all look at it and keep dicussing the results in a frank and oppen manner.

Gareth

[Sajeev]

Yes...thats if they are reviewed...how can anyone pass judgement before that...that would be prejudging it or it would be presumptious...

Basically it is clear no one is interested and there is apathy from those who represent/look after us!

That is the main problem!

[Lynn White]

Aha Gareth!!

Some interesting points....what do you do, then, that you have to send scientific research papers back??

You know, research is a very thorny subject. I have done, and still do, research relating to contact lenses and so have mixed thoughts about what you say.

It is very true to say that much so-called scientific research is based on very small numbers and the results are often fudged to hide negative results. But I would put it to you that the FDA and organisations like it often contribute to this problem. How?

Well... consider this. It takes a great deal of effort to set up a research idea, find the grants, design the project and so on. If it concerns new drugs etc you have got to be SO careful it causes no harm and it is often prohibitively expensive to put new ideas through organisations like the FDA....

However, you have a new idea for, lets say, a KC procedure... you go through all the hoops, pay out all the expenses and then two months into the trial you find you were slightly on the wrong track.

You want to tweak the procedure - but you can't because you are now in the middle of a trial and you have to see it through - which could mean wasted years!! Its very VERY frustrating!! This in itself often leads scientists into temptation - if they fudge the results a bit - the company might recoop their outlay before their work is discredited....

Don't get me wrong - I am not saying this is right - but often people forget that researchers are human too and that money has to come from somewhere.

What I am saying is that I know for a fact that many small companies are put off from doing "proper" research because they would go broke if they did.

Sometimes, progress is made "non-scientifically" and what better example of this, is this community???

Everyone here offers advice to others, not on the basis of hard scientific fact but on personal experience and finding out what works in practice.
This is far more useful to a newly diagnosed KC than reams and reams of scientific papers!

Yes, the FDA etc are there to help the patients - but sometimes the pendulum swings too far....

Now - I'll just duck down before the lynch party gets me!!

Lynn