Why almosteverybody to this forum have made corneal transpla

[Zeus]

Hello,

I am a new member to the forum and i keep wondering for days now since i enter the forum.Why almost everybody in here have made corneal transplants or else as you say grafts??

Who suggest this surgical method to solve keratoconus?What are the long terms of a graft?Does anybody know?

[Andrew MacLean]

Zeus

I guess that the answer to your question is that there was a time when Keratoconus was not diagnosed early, and when people who had been given a diagnosis would wait until they were in real trouble before coming to the forum. That at any rate was my story.

A corneal graft, or a cornea transplant (these are two descriptions of the same operation) is a standard method of managing keratoconus in its later stages. It is not offered as a cure, but may give the recipient good sight for the rest of his or her life.

In recent years there has been some discussion about the type of graft that is most suitable for people with keratoconus, and in some hospitals this depends on other factors. My own ophthalmologist now favours partial thickness grafts (DALK), but he will perform full thickness grafts (PK) if, for example, the back layer of the recipient's cornea has been damaged by a hydrops episode.

In the time since I was first diagnosed other techniques have become available that may slow the progression of keratoconus so that the patient will never need to progress to a transplant, and it should of course be acknowledged that most people with keratoconus will never need to progress to any surgery at all.

Andrew

[rosemary johnson]

Hi Zeus,
I think one of the reasons there are lots of people here who've had grafts/transplants is that it is the peple with the more severe KC, and who have had the more radical treatments, who find the most help from a support group.
I mean, if one's KC is only mild and ordinary contacts are fine and dandy, why would one need so much support?
Grafts/transplants are a management strategy - it is only very rare that they give perfect vision, but the ought to make a more regular shaped eye that can be corrected with glasses/contacts more easily.
I have met someone who had had her transplants over 40 years ago, and they are both still going fine.
we told her she must have had them done very young!
Other people are less fortunate......
Rosemary

[Zeus]

Hello people for the last time,

I have respect to myself so i will leave the forum.The administrator and the moderator think that i am unwelcome in here.They have taken my topic and my posts.I have post many times but no one can see anything because afterwards they are removing it.I thought that English people were about honesty,friendship,politeness and not trying to shut my mouth for telling my point of view.

I want to say that Crosslinking is the best treatment for KC and secondly a topography guided PRK treatment will offer you unique results and you will be happy again for your vision as i am.This treatment it is not only for early detected KC as it has been said in here.Moreover,Intacs can offer good results or Ferrara rings.High index aspheric glasses and KERA3 soft lenses for KC are healthy options for KC.Dont ever be guided to a treatment.Read anything there is and then decide.Dont be a fool of nobody.

I wish we could discuss more but i can not tolerate it this situation with the promotion of invasive treatments because the hospitals are offering them for free.Mercy....

Best Wishes,

[Karl R]

You allege that the forum promotes corneal transplants as the only form of treatment. If cared to take the time to actually read through the 3344 topics and 37095 posts you would realise that all treatments are taken into consideration and equal emphasis is given.

On a similar note you are promoting collagen cross linking as the main treatment option, there seems to be a double standard there.

For your information I have not had a corneal transplant, but do have Intacs in my right eye. I have had fantastic results in the level of vision following this treatment however I know of other members who have had the same procedure done and their level of vision has not been anywhere near as improved as mine.

You need to consider that just because one treatment method worked well for you it may not be the case for another member. Similarly not all KC patients are suitable for the newer treatments and a corneal transplant is the only viable option that they have in order to gain useful vision.

[Zeus]

Karl you have KC and you still havent perform crosslinking despite that you can stop the progression of your disease?!!!!Who is your doctor that he or she doesnt recommend to perform collagen crosslinking.Please,you should give public the name.

I am writing again to tell you that with the Intacs you only improve your vision,you are not facing the KC disease and the underlying symptoms.You should freeze the progression of the KC before its too late my friend.I have nothing to gain by saying crosslinking is the best treatment.Think about it.

Ask all the German and Swiss doctors and every pioneer surgeon to this world to tell you how things are.With the crosslinking you will stop the disease.All others are temporary measures to maximize your vision.Not to treat the KC.If the KC progress despite the intacs placement your vision will become worse.

Anyhow,i hope that you take into consideration my words.Perform crosslinking now you have the time because if your thickness become below 400microns then you will not have that option and you will end up with you know what.

Takecare,

[John Smith]

Hi Zeus, and thanks for your interesting contributions.

Crosslinking is indeed a wonderful new technique, and rest assured that where appropriate we will indeed recommend it. However, as you say, C3R can freeze the onset of KC, thus stopping existing KC from getting worse. Sure, in some cases, it has even shown a slight improvement.

C3R is wonderful. I agree. And if NICE also agree, we should see C3R proliferate under the NHS, so UK citizens will increasingly get this treatment for free.

But whilst plastic surgeons and orthopedic surgeons can do excellent jobs, sometimes limbs need to be amputated. It is for similar reasons why grafts should also be carried out. Sometimes, just stopping the progression of KC is not enough, as the patient cannot see well enough any more.

I'm sure that further C3R options such as epikeratophakia will reduce still further the need for grafts in the future, but the last resort of a graft must always be there for those who have had hydrops or severe scarring. In my case, the leading consultant doing research into C3R options performed my recent graft, because I was "too far gone" for anything else to be worthwhile.

[GarethB]

We all must accept grafts/transplants are necessary for some people and then this option is offerd and it is the patients choice if they receive this treatment.

I am sure all of us here on the forum advocate that grafts/transplants are the last resort treatment for us as it can never be undone.

For a vast majority grafts/transplants do end up being the solution with many needing to wear glasses rather than contact lenses. Grafts/transpalnts have a good life span, mine are 20 years old and are in far better health than the host cornea they are attached too.

As with any treatment option we must discuss them with our consultant adn weigh up the benefits and any pit falls that may be encounterd and from that make an informed choice.

We all wish for the day when our condition can be cured and to me a cure is the condition is reversed, not halted. Graft/transplants halt the condition as C3R appears to halt the condition.

Intacs help reshape the eye to make lens fitting easier and many surgeons state the aim of a graft/transplant is to provide a cornea surface where vision correction is made easier. Something C3R does not do as it appeasr to stop the condition, but if you have a cornea hard to fit a lens too, the problem still remains.

As I said there are many treatment options, here we share experiences and with what we learn we share with our consultants when working with them to find the best treatment option for us.

[Zeus]

Hello Gareth,

If Andrew hadnt removed my topic Crosslinking combined with Topography Guided PRK you would have read about two amazing things:

a)With the crosslinking you are freezing the disease and the symptoms and perhaps you will have a better curvature.

b)With the Topography guided PRK you are reshaping the cornea with a unique way using Wavelight Customized technology with special aspheric flying spot laser.So this answer your question about how you will give better correction to the cornea.This treatment uses crosslinking as a safety net and PLUS for a bonus comes the PRK laser to correct your vision and do things again sharp and clear.Just amazing.No words for that.

Anyhow,i described my experience and how i was benefit from this treatment.I think i am dedicating too many time and people often misunderstand me.Moreover,i would appreciate a guy just for spending a little time and write this innovative thing that i think no else has writen in here anything about it.All i read is transplants etc etc.So wrong in my opinion.

All the best,

[Andrew MacLean]

Actually, Zeus, i did not remove anything, I just moved one topic from the General Discussion Forum to the "Let off Steam" forum. where I thought it belonged. I notified you of this at the time. You can still find the topic at Crosslinking combined with Topography Guided PR

For my part, while I have now had two grafts, neither I nor anybody else on the forum has ever advocated the graft as anything but a last resort; after all other therapies had failed.

At the moment, we have no data on the long term effects of CXL. the therapy does show considerable promise and is already widely (but not universally) available in Europe. In time it may become widely available as an approved therapy in the United States and in the UK on the National Health Service.

Even when that time has come, there may still be cases where people will need to have recourse to transplant surgery; and we shall continue to offer support to people who have decided to take that step. We each of us are alone in knowing the anguish and suffering through which we go; the frequent pain and then in the case of some of us, the blindness before we agree to have a transplant. The last thing we need is someone with a different experience telling us that we have been 'misled' or that we have been foolish or gullible in making the decision to have transplant surgery.

Andrew

ps I think that the Greek for "gullible" is