My Intacs Experience

[GarethB]

Eddie,

You may end up going in for more than intacs if you other half isn't too keen on your suggestion

[linda36]

My money making son was over the moon with the replies. On a serious note I am sure we have a long road ahead. We find out in four weeks if the KC is in his other eye {I am told this may happen] I dont believe in keeping any info from him about the future. His consultant doesnt see any children with KC as advanced as his or any children for that matter! Even at eleven he has an amazing way of coping, he has great strength and a good sense of humour! I will keep you all posted.
Finally I am now told that the going rate for one night in hospital is thirty pounds! Bankrupt here I come !
Kind regards Linda

[alice44]

Well I wish I'd heard of this earlier. I will have to hold out for the eye fairy visiting me next time!!

It's now been a week since my intacs and I've returned to work today. My right eye is now quite blurry and the optician said this was normal at this stage, but strangly enough I have had moments over the last few days when it suddenly seems to come into focus and then goes back to blurry - I'm wondering if this is my cornea still settling?

As to my non-intacs eye, I'm really not sure whether I've made the right decision today to put the scleral lens in it. The reason being I have one really focussed scleral eye and one really blurry intacs eye and I'm starting to feel a little travel sick and headachy.

I remain as optomistic as I can, but was just wondering if anyone had any experience with time scale and vision after the op. I realise every case is different, but any feedback would be welcomed. I'm sure people must think I'm winking at them all the time as I keep comparing the vision of both eyes. In terms of comfort though - my new intacs eye feels really comfy and looks almost completely back to normal. Fingers crossed!

[GarethB]

Alice

Not had intacs but when I had lens problems and relient on one eye, it took a couple months to get used to lopsided vision where I no longer felt tired of headachey.

If you use a computer or do loads of reading, take lots of little breaks, even now I find this really helpful.

[Eddie S]

Hi alice,

Thanks for continuing to share your intacs story with us. I'm finding it really useful.

I'm kind in the same boat but on the other side of the river (!) in that I also have good vision in one eye (thanks to a contact lens) but poor vision in the right as i've been without a lens in that eye since around Feb/Mar when I started rejecting lenses. I wont get vision back in that eye until after my intacs op.

As Gareth says I find lots of little breaks help and the standard eye exercises of re-focusing - eg. at your computer screen, then across the room, then out of the window etc.

However, I find the easiest trick is just to cover the affected eye. Avoid eye patches as I found I preferred to see something out of focus than nothing at all - the eye patch gives you tunnel vision which isnt great.

It does get better and easier - at first my right eye hurt because I kept closing it (winking) but I've stopped that now, using the hand trick instead.

Good luck.

Ed

PS. The guy who you winked at in the post office at lunch is wondering if you're free for dinner tonight

[alice44]

Thanks for all the advice. I have managed to stop the winking so post office guy has lost interest

My school children asked what I'd had done and I said I'd had something special put in my eye to spot naughty children - they actually looked quite convinced!!

[Rich Moore]

Firstly, I share everyones sentiments towards this forum. Put simply, it's become an invaluable part of my life and helps in an unquantifiable way towards helping cope with KC.

I'm very interested to read about everyones experience with Intacs as during a visit to my Eye Hospital I overheard the Optom discussing to a colleague on whether I qualified for their Intac Trial. At the time she did not mention it to me, but on my last visit she raised the question. I said I was interested but would need to learn more about the subject.

My biggest concerns are the recovery period (?) and success rate (?). Over the last 5 years I've never had a pair of lenses that worked with my eyes. I'm thinking if they can't fit me with a pair of lenses, what makes them think they can operate on my eyes successfully?

Any advice to reassure me on this procedure is warmly welcomed!

[GarethB]

Rich;

Have a look at Intacs in the FAQ section, they are my notes made from a Birmingham Group meeting where the guest speaker spoke about Intacs.

Recovery periods I have heard have been from 3 - 18 months before vision was stable enough to be fitted with glasses, but success rate I am unable to comment on.

The aim of the surgery is to flatten the curvature of the cornea to make it more football shape rather than rugby ball shaped. AA truss so to speak for a wekend cornea. By doing so the aim is to produce a surface whereby the vision is easier to correct with either glasses or contact lenses.

A speaker at the 2007 COnfrence we had hit the nail on the head, 'what works for one person may not necesserily work for another.'

The good thing about intacs though is that if they fail to help, they can be removed and your eye goes back pretty much to how it is now. Therefore have you really lost anything?

Secondly if you are having problems getting a lens to fit, and surgery is only done on one eye at a time, what have you to loose by having intacs in one eye?

Hope this helps.

Gareth

[Karl R]

A speaker at the 2007 Confrence we had hit the nail on the head, 'what works for one person may not necessarily work for another.'

Why thank you very much Gareth, I believe that was me

Rich I would suggest you have a look at all the posts I have made on the subject of INTACS, suitability and prognosis after the procedure. There is also a diary of my experience here:

viewtopic.php?t=2769

In terms of results, everything is appearing to have gone much better than expected in terms of vision gained. I still wear glasses and always will, but for me it has made an enormous difference to my life although I still bear in mind that INTACS is not a miracle cure and can only delay what will become inevitable - a graft. Again I cannot stress enough that what works for one person may not necessarily work for another, but I hope through all the posts both myself and others have made, together with the information gained from your medical team, you will be able to reach an informed choice on the subject.

Hope this helps

Karl

[Anne Klepacz]

Rich - just to add that if you join our postal mailing list, I can send you our latest newsletter with another member's account of his Intacs experience, and you'll also get the Conference DVD (when we've produced it) and get to see Karl and other speakers on Intacs. Just PM me or e-mail me with your address if you're interested.
Anne