UK Keratoconus Self-Help and Support Association

Hi gang,

Ok after hearing this on Tuesday..

"Ahh yes, you are on the list but we can't tell you a date yet as we are currently waiting for parts.."

..I wasn't expecting much to happen for at least a month but yesterday a hospital letter dropped through the door. I now have a date for my right Intac operation of 2nd November, which makes it about 2 months from now and 4 months from when I got put forward for it.

Which is good news I guess, for me, and anyone else who is thinking about Intacs on the NHS. Not too long a wait (I think my double vision ops were 3 months wait but I may be wrong).

Questions to anyone who has had intacs, especially by mechanical rather than laser insert. Apologies if I have asked them before..

1. How long after the op will I be back to a functioning state? After my two double vision ops I have been groggy for at least a few days and had a weepy sore red eye for at least a week.

2. What is the procedure in the days/weeks after the op - how quickly should I look to see an improvement in my vision and/or before I am ready to have new specs/soft contact lenses.

Thanks in advance.

Ed

PS. They said they could MOT my car at the same time

Ed

I am really pleased for you! I've never had INTACS inserted, but I know that others have; I am sure that they will be able to answer both of your questions.

Meantime: all the best. They must hav managd to get the spare parts for their machinary.

Andrew

Good Luck Eddie

Eddie

Great news!!!!! Hopefully these will answer your questions based on my experience. Don't forget what happened to me may not be experienced by you.

1. How long after the op will I be back to a functioning state? After my two double vision ops I have been groggy for at least a few days and had a weepy sore red eye for at least a week.

Was groggy for about a day afterwards, unfortunate to get a nasty infection which lasted for a week - five nights of which I couldn't sleep due to the pain. It is unlikely to be as bad for you hopefully

2. What is the procedure in the days/weeks after the op - how quickly should I look to see an improvement in my vision and/or before I am ready to have new specs/soft contact lenses.

Improvement in vision noticed the day after the op when the eye patch was removed. Most improvement noticed 3 weeks after the op on first post op refraction. Vision starting to settle 6 months post op. How long before you can wear contacts I can't say as I still wear my specs.

You can find full details about my post op experience here

viewtopic.php?t=2769

All the best for your op and I'm sure it'll be a breeze. Please keep us updated after your op.

good luck with the operation and post what it's like on here!

i've decided that i would like intacs.

the consultant i see has never mentioned them to me before which i am cross about. after reading about them on the net i found out the other day by asking an optometrist that there is a kind of intacs waiting list, for consultation anyway. i'm gonna hastle them to definitely get put on this list. how long from consultation to operation would you say??? my local hospital (leicester royal) has to borrow the equipment apparently.

i'm considering a private consultation as well so i get a second opinion as i am v distrustful, esp in the current climate where most nhs trusts are trying to save money! (of course private have the opposite motive, to make you spend money!). anyway i'd like to see if both consultants reach the same conclusion!

i may try piggy backing soon as well... although apparently i will lose a line of vision.


tim

Tim

"Intacs" is looking like a promising method of manageing KC. There were some early setbacks in Europe, due in part to the indiscriminate way in which the technique was being applied. Most practitioners are now more circumspect about the patients to whom they offer this particular treatment, and the results look promising

Although no one has claimed that INTACS halt the progression of keratoconus there is some preliminary data which suggest that patients who have had INTACS and have had at least 8 years of follow up have demonstrated no significant progression of their disease.

(From The Keratoconus Centre

Andrew

timmytim7 wrote:i've decided that i would like intacs.

the consultant i see has never mentioned them to me before which i am cross about.

There are several factors to be taken into consideration when determining the suitability of a KC patient for the INTACS procedure.

Severity of KC
Corneal Thickness
Tolerance to contact lens wear

These are just some of the factors that are considered. INTACS is generally only indicated as a suitable procedure in patients who have "Mild" KC, and who are intolerant to contact lens wear. It is possible that your consultant has not mentioned this procedure because in their opinion you are not suited to the procedure, or it may be because your consultant is unaware that NICE have now issued guidance on the use of INTACS in treating KC. This guidance will make it easier for a consultant to obtain the required funding from the local NHS Trust.

In terms of the waiting time between consultation and the procedure being performed, I can only speak of my experience. It was thirteen months between the discussion of my suitability for the procedure and the procedure being carried out. Most of this waiting period was down to the fact that the NHS Trust were being reluctant to fund the procedure as no NICE guidance had been issued at that time, and I was to be one of the first to receive INTACS in the area.

This is a discussion that you really need to be having with your consultant if you wish to pursue the INTACS treatment route.

Eddie,
Great to gear, things are moving forward. It sounds like a promising procedure for you, with some good appraisal in the NICE guidance. Good luck with it, here's to better vision (I am metaphorically raising a glass here)

Hi all,

Thanks for all your best wishes. Between now, the operation and the after care I'll try and keep a diary going for the benefit of everyone (including me, so I can remember it!). I'll even try and take some pictures, if only to freak the guys out at work!

Karl, i'm crossing my fingers I don't get any infection. After the double vision operation your eyes are very gunky (as they operate behind the eye on the muscles, rather than the eye itself) and although I could cope with that, I dont think I could put up with the pain you had - I'd be driving myself to the hospital!

Donna, thanks as always - have you put your lenses on strings yet?!

Andrew, I'm walking out of the op if anyone says anything about WD40 or air filters!

Tim, feel free to PM me if you like. I am under the care of Leicester Royal and they suggested intacs to me rather than other way around. PM and I'll give you the details of the specialist I am under. Note what Karl says tho about having suitable eyes for the op. I went through a number of tests on my cornea thickness, topography etc before I was given the green light

Matthew, thanks for the toast. Here's also to good vision without sore eyes and without the niggling worry about wearing SoftPerm lenses. I just wish it could be this 'easy' for all of us.

Anyway, i'll keep all updated on the story/journey.

Ed

Nope not on etrings yet.............nearly ended up down the toilet earlier! Driving me mad at the mo

A diary is always a good idea