Well I dont know why you're wearing contacts...

[Eddie S]

Hi all,

Hope you are all well and seeing to you best

After a years break from having a specialist check my KC, I went for a check up at Leicester yesterday.

They took my case history = basically i've had KC since I was 18 or 19, now 34, lots of contact lenses between then and now, plus a couple of squint ops. The only lenes I've really been comfy in are softperms.

So I guess I was expecting to be fitted with the latest and greatest lenses, or to start again from scratch with standard RGPs.

Instead, the suggestion (or really, the only option given) was to give up on contact lenses completely and either try intacs or transplant.

That shocked me a little (actually made me feel a little sick) as I wasnt expecting this, especially as Brighton had always told me I was a long long way off transplant - my KC is 'mild'.

I was then asked to wear just one lens for the next 3 weeks (my left as my right eye has been a little watery recently) and go back and see them.

I've now read up some more on intacs and have read before about transplant (which scares me to be honest).

I guess what I am asking is is this the best advice. Intacs look great but only if I'm in the group that can accept them. Transplant worries me and I'd rather have 1000 days of bad contact lenses than a transplant.

Maybe this fear is misguided. I'm pinning my hopes on intacs at the moment.

Any of you have any views on this?

Thanks in advance.

[mike scott]

hi eddie

how have you managed for the last year ? sight wise. have you been coping?

only you can decide ultimately on the course of your treatment , nobody can force you to have a procedure that you dont feel ready for.

i understand that feeling of utter gobsmacked panic when you were told, i felt the same way, currently on the waiting list for a left eye graft , after many yrs of perseverance and suffering to be told the news i felt i had failed and KC was finally beating me .

question is do you feel you can cope longer as obviously surgery is a massive step and a last resort, but bear in mind the length of any waiting list, for me they quoted up to 2 yrs though will probably be shorter, so you have to try and think in advance a little as to how advanced your KC might be then. and you can still back off even at the last minute.

dont know if this helps or not but something maybe to think about

mike

[John Smith]

Hi Eddie,

In addition to the questions asked by Mike, I'd like to add that I was terrified about a graft, but I'd have much rather have a graft (even with all the problems I've experienced) than 100 days of uncorrectable vision, let alone 1000 days!

The graft is a wonderful operation, with high success rates and low rejections (especially with DALKs).

However, and this is is the HUGE "but". From what you're saying about being mild, I doubt that you need a graft yet. If your cornea is thick enough to support an intac and/or you can see to an acceptable level with a contact lens, then I'd suggest that now is not the time for a graft.

But if a graft is the way forward, don't panic. It really is much worse in the mind than in reality.

[GarethB]

I will echo what John says.

Plus with intacs it is reversable unlike a graft.

The other thing I would add is that Iwas told 3 years ago my KC inmy right eye was quite advanced and I would never be able to wear glasses. Well I easily make the driving standard, still getting used to the glasses because the periferal vision distortion makes me motion sick, but I do have a back up to the contacs which give the best vision.

Had a graft in each eye too and I would rather have the graft than a bad eye day, but now I have option of glasses for when I do have lens trouble.

My grafts are nearly 20 years old and although it is the scariest thing I have done, it is all in the mind and the best choice I have ever made regarding my vision.

Mike is equally correct in that only you know what is best for you and you can back out of surgery right upto the point your are about to have the anaesthetic, you can still back out.

[Karl R]

Hi Eddie,

Just to echo what others here have said, it is you who has to consent to any form of surgical intervention, none of the staff can force you into having surgery.

If your cornea is suitable for the INTACS surgery make sure that you are fully aware of all the pros and cons of the procedure.

INTACS is not a miracle cure nor will it guarantee that you will never have to wear lenses or glasses again, what it is is an aid to the management of KC where glasses/lenses no longer give a reasonable level of aided sight.


The pros are:

Restoration of useful aided sight.
The procedure is fully reversible.

The cons are:

No refractive correction gained.
Risk of infection.
The presence of halos/glare post op.

From recent personal experience, INTACS were a great step forward in the management of my KC having gone from 6/15 aided to 6/5 aided in my right eye which had the implant. I still have KC in both eyes but for now will not be having any surgery done to the left eye as can get good aided with glasses in that eye. It may be a coincidence regarding my left eye, and even my consultant is unsure of the actual reason, but after having the INTACS in the right eye the aided vision in my left eye went from 6/12.5 to 6/5

Like John has said, if your KC is still only mild then a graft is probably not going to be an option for you at this time

[Eddie S]

Thanks for your responses guys

Up until the beginning of this year I was blissfully happy with my softperm lenses. Always in the back of my mind was the dislike of them by optometrists (a last choice lens rather than a first choice) but for me they have been really comfy and my sight good enough - legal to drive.

However, the beginning of this year changed everything as my eyes have been progressively more aggrevated by the lenses - rather than just red they now tend to look 'angry'

Having had two squint operations, (including the 1st one where my squint was corrected manually using surgical string the morning after the operation, that thought seems to turn peoples stomachs!) I have no issue with eye ops.

Plus, before I wore lenses I, wore glasses from around 10/11 years old, so I have no issue with them either. Looking back at pictures I did look a bit like Harry Potter tho!

From those of you that have had intacs inserted, would you say that your vision has improved enough to take you away from lenses and back into glasses, or away from glasses and lenses completely?

And for those of you who have had the transplant, has the same happened - have you moved back into glasses and away from lenses?

Thanks in advance

[Karl R]

For the vast majority of those who have INTACS glasses or lenses will still need to be worn

[BlackA]

I think that the pressence of halos after the INTACS is rare now.

Hello Eddie, I would like to help anyway I can.

It is widely agreed that the graft is the last resort so you should try everything else first.

The problems about the graft are the following:

- Major operation
- Rejection problems
- Long recuperation time (12-15months)
- Graft life limited
- High residual astigmatism, usually RGPs are still needed. Check this link

modernmedicine.com...

The intracorneal rings will help to reguralize the cornea so vision, aberrations and lens fitting will be improved. However the effect is limited, you can expect an improvement of 2 vision lines roughly.

I would definitely go for the rings (INTACS or Ferrara). An additional reason is that graft techniques are being improved constantly, right now the future femtosecond cut looks specially promising, so the longer you can delay it the better.
Finally if you KC is progressing I would recommend you undergo the crosslinking procedure before the rings implant.

Regarding the mild KC I may suggest to post your topographies and Ks values if you'd like to hear our opinion about it.

best luck to you

[Andrew MacLean]

Like some of the others, I kept putting off the graft (I have now had 2), mostly bcause of fear. With the operations behind me now, I think I'd have accepted surgery earlier (but not much earlier).

KC can progress rather quickly. it is entirely possible that your cones have become so steep that it would not be possible to fit a lens.

Were I you, I think I'd explore the Intace option, but keep the transplant in reserve: if Intacs looked like it was not such a good idea then I have become an advocate of the surgery of last resort: transplant surgery really should not be feared.

Andrew

[BlackA]

Only want to add that I agree with Andrew.