Corneal graft - precision laser surgery

[Steven Williams]

The most often asked question here and most difficult and scary decision of my life was should I risk it or not - a graft i.e a corneal transplant.

My management of KC has been don't take risks unless you have to, keep wearing glasses until they dont work, then contact lenses after correcting dry eye condition and finally if that fails to bring me up to driving level standard vision, a graft
In the end I had no choice but hey I had a good run diagnosed with bilateral KC in 1984 first graft in November 2013.

One of my reasons for leaving it as late as possible was I believed that by doing so I believed there was a better chance of success due to advances in technology and methods. That has happened and thanks to the sharing of information and the worlwide web its advancing at a faster rate.

I did a huge amount of personal research trying to look at the best options and try to understand why there were successes and failures of corneal transplants.

This thread, which i read a couple of weeks after my surgery imo is a gem - and as Drink says

you Sir are very lucky

I totally agree, highlights this.

http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=13059&p=68577#p68577

In 2011 (still at age 20) I decided I cannot tolerate RGP and got a transplant in my left eye. I had the transplant in New York City. They used the latest possible technology - DALK + Intralase, so that the incisions were made by the laser and not by the surgeon`s hand

My surgery at on the NHS at Manchester Royal Eye Hospital, I was informed by Mr Brahma done manually by himself, a DALK with 16 stitches.

Key questions are:-

1. does precision surgery have less of a risk of rejection and infection than manual surgery?
2. does precision surgery achieve a better outcome in vision than manual surgery
3. bearing in mind this precision surgery was done in 2011, so where in the UK can you obtain precision surgery on the
the NHS and also privately?

Something those contemplating a graft may consider looking into.

[vintagerose1962]

Hi Steven,

My daughter is booked in for the end of march for a first ever graft. Am I nervous, like hell. Her cxl in the good eye is done first week of January.

its really the graft I worry about, been reading a lot and a lovely young lady here told me about centre for sight regarding precision laser surgery, they offer what is called, Femtosecond laser DALK. I don't know anything about it, either manually or this way so will be getting the info from the website. The reason for the graft, my daughter has corneal scarring and has never been able to tolerate hard lens even those big things that cover the whole eye.

A lot for me and my daughter to take in, two ops in a space of a few months, lots of appointments, but hey, one day at a time.

I have no idea of the cost of femtosecond laser treatment but it is available!!

Pam.

[Steven Williams]

Pam thanks for the information regarding laser surgery.

What age is your daughter and when was she diagnosed with KC?

One fact you should be are aware of with CXL and corneal transplants tis here are no guarantees and outcomes can be negative as the evidence on this board shows (eg. Space Cadet).

What doesnt help us is there are no stats on the percentage of successes and how success is defined.

Success to me means the vision after the treatment is an improvement on the standard of unaided vision you had in the eye before the operation in the case of a graft or n the case of CXL it is a success if it stops or stabilises/slows done the progression and as a bonus if it actually improves the vision.

What do the professionals define as success?

Most people who have a graft and CXL usually still need to have to continue wearing contact lenses and those who have grafts have to put steroid eye drops on a regular daily basis. Also there is no guarantee a transplant can last forever and rejection and other problems can arise which will necessitate a replacement graft.

Regarding corneal transplant there are two types PK or DALK. From my research there is less risk with a DALK of rejection/infection but there is more potential visual improvement with a PK.My surgeon was unable to advise me if he was doing a DALK or PK and that the decision would be made in theatre.

Came across this in my research:-

http://www.revophth.com/content/c/29946/

Not researched CXL as it came too late I was informed for me on the NHS, but one thing I thought was does CXL restrict or have any negative effects on future eye surgery and if a transplant is scheduled should CXL be done on the transplanted cornea with that procedure or shortly after it?

[kieran19685]

Steven

I don't think its suitable for Pam to hear you being so negative towards CXL and grafts. There are many people on this board with success stories therefore its not fair just to highlight the possible complications!

[Steven Williams]

Steven

I don't think its suitable for Pam to hear you being so negative towards CXL and grafts. There are many people on this board with success stories therefore its not fair just to highlight the possible complications!

I think Pam is quite capable of speaking for herself and her daughter. BTW regarding CXL perhaps you could explain why NICE have not yet given it the stamp of approval.

If any of the information I supply is factually incorrect I'd be most interested to receive the information here on the public forum.

Success is all about making the right choices and decisions based on full accurate disclosure of information and all options available, whether that be negative or positive.

I suspect that the majority of graftees, like myself, give their consent to the operation because there is no other choice and take the risk.

[space_cadet]

If I had known the risks of the transplant n what could and DID go wrong I probably wouldn't have had my graft as my quality of life for the first 18 months post graft was not quality but was mere existing day to day.

Sensitivity to light above all norms, havingto wear sunglasses every waking moment, sleep with flight masks, keep the curtains shut regardless of the weather and time of day, defer a year of studies due to being in eye casualty on a daily basis due to 11 months solid of chronic infection which took 3 bouts of specially made antibiotics to treat and shift, persistant and regular rejection episodes, not knowing if in the morning I would wake with yet another delibitating migrane, I was not alive, but purely going thru the functions of a grim existence, I wish to this day someone had had the balls to sit me down n tell me what could fair enough not in many cases but does go wrong, from personal experience it was only when I started to voice my experience on twitter and facebook that others came forward to say how poopity things had been for them and we found comfort in sharing our experience, giving it a voice and the validation which it needed to bring closure to the experience for us,

voicing good n bad is healthy, it is productive it prevents isolation n individuals feeling that they are alone n the only one to have such a experience.

YEs it is distessing for those who have a plain sail to read, but as I have said many times the uniting things iwth this is we all have or care for someone with Keratoconus but how we suffer, thrive and live our lives our experiences is what makes us all individual unique cases, n it is mindful to remember in times of panic and crisis that we dont ever fully know how it is for another unless we voice n have the freedom to do so without fear of being silenced and the paralysing guilt many have said they have felt when their transplant has gone relevatly calmly compared to others.

Keep voicing out, keep giving your experience a loud coherant voice, share the good as well as the bad.

educate yourself from others, n never lose hope that perhaps one day a cure will be found for this what can be for many of us a deliberating condition

[Anne Klepacz]

Epi-off CXL HAS now been approved by NICE. We informed our members of the likely changes in the last newsletter, which went out before the revised guidelines were published, and I posted a link to the new guidelines (issued at the end of Sept www.nice.org.uk/IPG466) in a post on this forum which can be found near the top of this page.
There are also plenty of stats on the success rates of corneal transplants for KC which can be found by googling 'what is the success rate of corneal transplants for KC' (success rates for transplants for other eye conditions are lower). These all quote figures of over 90% and for the centres which regularly do a lot of operations, the rates are 95% and above, and improving all the time. As far as I can tell, success is defined as a clear cornea post graft and in terms of survival rates with historically around 50% of grafts surviving 20 years or more (and that is also likely to be much higher now with the huge increase in DALK grafts which have better survival rates). The majority of people will still need either glasses or contact lenses after a corneal transplant, which is why a corneal transplant is only usually suggested once all lens options have been exhausted or if someone is or becomes intolerant to contact lenses.
Yes, there are risks with all surgical options and there can never be a 100% guarantee of success. And while it's hard for those people in the 5% or so who don't get a good outcome, it's important to get things in perspective and remember that for the great majority of us who have had transplants, it has given us our lives back. I didn't have a straightforward graft journey all those years ago, and there were times then when I too thought that if I'd known about the possible complications, I might not have gone ahead. But looking back now, with good vision with either contact lenses or glasses, I will be eternally grateful to the families of the donors who gave me the chance of sight, and to the surgeons who made that chance a reality.
So I hope we can use this forum to support each other in both the bad times and the good times.
Anne

[Steven Williams]

http://www.keratoconus-group.org.uk/expert_contributions/kp/when_to_get_a_transplant.html

it is mindful to remember in times of panic and crisis that we dont ever fully know how it is for another unless we voice n have the freedom to do so without fear of being silenced and the paralysing guilt many have said they have felt when their transplant has gone relevatly calmly compared to others.

Keep voicing out, keep giving your experience a loud coherant voice, share the good as well as the bad.

educate yourself from others, n never lose hope that perhaps one day a cure will be found for this what can be for many of us a deliberating condition

Well said Lea

[vintagerose1962]

Good afternoon all!!

Hiya Steven, thanks for your reply, what I will say in response to whether your comments are negative is this.

I have never trusted hospitals or consultants regarding any kind of operation. Am I negative, no, I need to know the worse case scenarios, is that a bad thing, no, just informative and it makes me wiser, hopfefully learning here and reading of others experiences, positive or negative, does to some degree help me!!!

CXL, as Ann has rightfully pointed out has been approved. I sent a private email to Dan gore, regarding the transepi cxl trials that was posted here a while ago. I asked about the difference, between both , epi on and epi off as I needed , something, someone, to just give me some form of statistics especially as Moorfields only received funding for this last year. He kindly replied to me, and did quote that since Oct 12, Moorfields has preformed 350 eye op with very positive results and one possible negative outcome. if I wanted the epi on , it would be private, but Moorfields epi off is the only procedure that has been approved by NICE, and the only one done at the hospital as epi on has not got any approval as yet to date, that's not to say, it doesn't have great results!

As each of us is different in varying degrees, faith and hope, is all I have and cross my fingers and believe to a certain degree that all will be well with my daughter, who is 26 by the way. So with all that I have read, it will be the epi off procedure in January. The link that you sent me, is very very interesting. Thank you for that!

My only sadness , is due to my ignorance, is that I never knew about private treatments in the uk, perhaps back then, my daughter could have had the cxl on the eye that needs a graft now!!

Yes many on this forum have had great outcomes to cxl, this is what I need to hear too, to balance the negative, as we know only too well, the risks involved. The risk of doing nothing, might only delay the inevitable so for me, its a really a matter, of ' WHEN'.

it is also of a question of when to do or have a graft, regarding hydrops, is it a question of having a graft after episodes of hydrops, and does having a graft mean that having a hydrop is reduced, or even never happens again. So the questions are many, those of you who have kindly emailed me privately regarding your ops, for this I am grateful, you've all so far been very open with me, no matter how scared I've been, its all being valuable to say the least.

I have much to learn, and not sure at this time, if all the information I have regarding a graft on the nhs is the route I want my daughter to take, but that's in the near future, until then will enquire about other possible treatments as mentioned in my first reply about the laser precision graft.

As for cxl, 6 months of faffing around with ignored referral request for my daughter resulted in a small progression of KC in her good eye, but shes having it done in January because I presented myself like a virus that wouldn't go away! For consultants who prefer to push for contact lens treatment only, should reconsider their motives as to why they wouldn't recommend cxl before it gets worse especially when there is a time limit for cxl to be done. I believe it is 400microns. Too late for her bad eye, I have been told, but also have recently learned that cxl could be done on thinner corneas, so will be looking into that.

Once again thank you all for your replies. Steven it was a pleasure speaking with you!

Wishing you all a very merry Christmas!!

Pam.

[Loopy-Lou]

Support forums are for the positive AND negative experiences and everything in between, their purpose is not to just offer glittering success stories of people who have good experiences (or if they don't it doesn't matter because nothing ever gets them down and they can do anything even if they lost both eyes and all limbs).
We need to hear the full range of experience and the full range of coping/not coping, there's nothing more isolating then only hearing the ultra positive, there's always something to be learnt and offered from all experience.

We might not even have had nurse counsellors in eye hospitals if it were not for patient groups raising the issue of living with difficult experiences and/or struggling emotionally/practically.

Grafts are a big deal because there are life long implications, DALKS offer better survival rates but PK re-graft survival rates are not good at 53% there's no sugar coating that.
I have PK's, I had an RGP change after many years (for the health of the graft) and lost some vision in the process. There are some blood vessels around, if they reached the graft they can make it fail. RGP's scuff the cornea more than soft lens and lens intolerance can be harder to treat than graft rejection. I don't care if there are people out there with 50 yr old grafts, I don't know whether that will be me.